coupleonbench

You’re feeling guilty, the person you’re caring for is feeling guilty – there’s plenty of guilt to go around, we’re never going to run out. We can’t escape it; we’re only human after all, but we can try to understand it so it doesn’t take over our lives.

The person who’s sick feels guilty because they feel like a burden. They do what they can for themselves, and try not to complain, but they can’t help it: this illness, and the treatments, are very strong and their body only has so much energy to fight with. And, it feels so much better to have you there, sharing this struggle with them.

Caregivers, you feel guilty for many different reasons:

  • You aren’t sick….and you’re glad you aren’t sick.
  • You didn’t somehow prevent them from getting sick.
  • You sometimes forget things, or don’t do them as well as you should.
  • You get tired and sometimes cranky.
  • Thoughts of resentment sometimes pop, unbidden, into your head.
  • You survived, and they didn’t.

Your body has a finite amount of energy, and when it runs out of energy, things start to get a little weird. Your head hurts, your body hurts, you’re depressed, you have less patience, you can’t think clearly, you’re overly emotional, you say and do things you wouldn’t ordinarily say or do. It has nothing to do with how much you love the person you’re caring for, it…..wait. I take that back. It has EVERYTHING to do with how much you love the person you’re caring for. Because if you didn’t love them so much, you wouldn’t be doing all the Herculean things you’re doing to try to make them feel better.

So the next time you’re feeling guilty because you aren’t a super hero with super powers, cut yourself a little slack. Because I’ll tell you something: the fact that you feel guilty means that YOU ARE A COMPASSIONATE PERSON.

Compassion |kəmˈpa sh ən|
noun
Sympathetic pity and concern for the sufferings or misfortunes of others. See note at mercy .
ORIGIN Middle English : via Old French from ecclesiastical Latin compassio(n-), from compati ‘suffer with.’

Sympathy. Pity. Concern. Mercy.  These are all feelings that only a compassionate person can feel. Have you ever met someone who thinks the world revolves around them? Someone who has no interest in, or concept of, the feelings of others? Can you imagine them feeling those feelings of compassion? Or guilt?? If you were sick, would you want this person caring for you? Absolutely not!

So while you’re beating yourself up, think about how lucky your loved one is (or was) to have a compassionate person like you, with your sympathetic, beautiful heart, for a caregiver. And while you’re forgiving yourself for being human, think about that caring heart of yours, and take good care of it – it’s a gem.

If you’d like to read more about caregiver guilt:
http://www.caregiver.com/articles/caregiver/caregiver_guilt.htm

Some websites about heart-healthy diets:
Mayo Clinic: 8 Steps To Prevent Heart Disease:
http://www.mayoclinic.com/health/heart-healthy-diet/NU00196 

Eating Well: Heart Healthy Diet Recipes and Menus:
http://www.eatingwell.com/recipes_menus/collections/heart_healthy_diet

Web MD: 25 Top Heart-Healthy Foods:
http://www.webmd.com/food-recipes/features/25-top-heart-healthy-foods 

 

 

60 Responses to Guilt & Your Heart

  1. Susan says:

    I am feeling guilty over so many things these days. Feeling guilty for all of the angry thoughts in my head. My patience with my partner is at the edge. I am feeling guilty because he seems to be getting more cognitively impaired, and I am losing patience with that. I am feeling guilty for feeling angry that we barely can communicate any more, and can not leave him alone for more than an hour, because he forgets stuff on the stove, and is burning when I get home. I ask him not to cook when I am out of the house and he does anyway. I have been down and out with shingles over the last few weeks which hasn’t helped. His son will be staying with him for four hours on Monday’s and Wednesdays. I feel guilty about that. I recognize that these feelings and others are natural for being in this position, but it doesn’t make it any better. I am starting up with counseling again, so maybe that will help. Thanks for letting me vent.

    • Jean F says:

      Susan, you’re smart to start up the counseling again, it helps to talk to an outside person about what you’re going through. I’m glad you recognize that these are natural feelings, but I think you’re still being too hard on yourself. I’m wondering if some of the loss of patience and the anger at your partner has some sorrow and fear mixed in. It’s so hard to watch someone we love and a relationship that was once so good slip away, and on a very deep level it frightens us to think something like this could happen to us one day too.

      I think when we’re at the end of our rope a bit of anger gives us that extra bit of energy to keep hanging on, whereas sorrow weighs us down and makes giving up seem easier. So some of the anger you’re beating yourself up over might actually be sorrow and fear, manifesting as anger so you can keep on keeping on, which even you can’t blame yourself for feeling.

      Susan, you aren’t a bad person, you’re a good person in a bad situation. And who in the world could do a better job at it than you? If there’s a line of people outside the door who are just itching to have a go, let them try.

      It’s wonderful that his son will be giving you some breaks – it could turn out to be some important father/son time and you don’t want to deprive them of that. Someday, when his father is gone, he’ll be so glad he spent this time with him. So don’t waste a moment feeling guilty about that.

      Vent away, we appreciate it – it makes our own guilt that much less.

      • Susan says:

        Jean,

        Yes, all that you have shared is true. I am frightened what the next chapter holds. As sick as he is now, I know what lies ahead will be worse. I am devastated by seeing the amount of pain he is in, and how the painkillers are not cutting it. Every day brings another loss. Today we were reminiscing about a fun time we had one Fat Tuesday, which I had never celebrated. He went out and got beads and funny glasses, and we went out and had huge banana split. I am somewhat of a large girl, and we laughed over the women who were looking at me aghast. He always has loved me, my shape and that was the beauty of our relationship. I asked him today what he wanted to do for Valentines Day, maybe a romantic dinner? He said, “What’s a romantic dinner?” It sounds silly, but it is just one more thing that the Hormone Therapy has chipped away at. Intimacy is a forgone conclusion, but what remains I genuine love.

        So yes, the anger is for what has been lost, but also is girding me for what lies ahead. I thank you for your wisdom and sharing your journey for I know it continues. Thanks also to the other ladies who continue to provide support as we tread these waters together.

        Susan

        • Char says:

          Susan I so get the anger, I have felt it over the years especially this past year. It usually hits me of course when things are really going downhill, which of course is bad timing. Dealing with the entire situation is hard enough, and then when I stop and think of all we have lost, I break down. This feeling doesn’t last for a long time, I fully understand how lucky we were to have had a good 15 years together before, our life changed forever. We have been married for almost 31 years. The last 15 years or so have been different to say the least, and the last 5=8 have been horrible, but as I said last year was very difficult. There is nothing we or our loved ones can do, but travel on, and remember love as it was, and be thankful it has survived to this day. Dealing with pain is the most difficult and my heart breaks for you both. Know you will be in my thoughts and heart, as each day passes. Susan, here for you……whenever

          • Susan says:

            Thanks so much Char. It does help to know I am not alone in my actions and my feelings. My guy is kind of out of it, but he recognizes how hard this is on me, and it is breaking his heart. That sounds entirely backwards as I write it, seeing how much pain he is in, etc. But it is nice when he recognizes my efforts. We both miss so much of what we had, but are thankful that we still have each other. Today we both promised to have more fun together as much as we can. Now that the shingles are winding down, I am beginning to recognize myself again. I thought I was turning into Bette Davis or something. LOL!

            • Jean F says:

              Susan, I’ve recounted before the time I told my husband “I miss you.”, and he said, “I miss me too”. It does break your heart!! I had shingles once too, the stress wreaks havoc with your immune system, leaving you vulnerable to everything. I’m glad you’re on the mend, they are awful!

            • Em says:

              Susan, with all that you’ve been facing and then having a shingles outbreak on top of it you have nothing to chastise yourself over, you’re heroic. And having recognized that fear was underlying your anger, you must also have found you were angry at the circumstances, not at your beloved partner.

              Your physician has also probably mentioned that another shingles outbreak could happen, and that the best way to keep it under control is to keep your stress down, which won’t be easy in your present circumstances. But if you can set a reminder on your cell phone for every few hours to take 60-90 seconds for yourself and take 5-10 slow deep breathes feeling your lungs expand when you inhale and listening to your breath as you exhale. Strange but something so simple can help manage your stress and keep the shingles away. If you can just remind yourself to do it. And giving voice to your frustration and worry here, that helps too.

    • Char says:

      Susan, I have many moments, possibly too many, when I completely lose it and say things I don’t mean. I never had much patience, and it is down to the empty mark. When it happens I retreat to the second floor of my home, listen to music and work on some of my hobbies. There is no getting away from this caregiving task, and as Jean said, I wouldn’t want anyone else to do it, but having time off is a must. take it and run girl! Not feeling well yourself isn’t helping the situation either. I hope each day brings you closer to better health, and lessens those nasty feelings of guilt. And yes I have them too.

    • Pam A. says:

      Susan I read your post with tears in my eyes because I can so easily relate to anger and frustration lately. And fear, that is one of the big ones too, especially with the feeling that you may come home to a fire on the stove. What I think I had to learn for myself and I now tell my patients (I am a nurse) is that there is no wrong feeling. Feelings just are. The tricky part is how we address them and deal with them. Jean was right about anger fueling your energy. Just one example of taking a negative and turning it into a more positive thing. Counseling is a great idea. I can say it did me a world of good at a time I needed it most. But please do not beat yourself up over how you feel. I pray counseling will guide you to a way to handle the feelings in a positive way for YOU and yours. God Bless. Pam

  2. Cindy E says:

    I have read this one before and may I add with a cynical eye! I am at the point where I am not taking care of me at all. Who is that helping??? I am only a part-time caregiver. I go to my friends house three days a week for anywhere from 5 to 12 hours! I work the other four days. That’s all the time I have. Where do I fit it in? The demands on me are huge. The nature of this illness that my best friend has just wears you down. She has a fatal form of dementia called Frontotemporal Dementia. FTD. I hate this disease. She is in later part of the middle stages. She is combative, verbally abusive, physically abusive, constantly agitated. She has outbursts and tantrums like a child. She doesn’t sleep through the night. I sometimes am needed to go there in the middle of the night. I don’t sleep because I am afraid she will wake up and wander off or do some damage to the house. She is 44 years old and has an 8 year old son. It’s the most heart rending thing I have ever had to deal with! Her husband is in a sad state of denial. He is confused and all over the place with things that need doing. She was my rock. She was my strength. She was the person I strove to be like. And she is physically still here. But that amazing, warm, kind, giving person is not. And I don’t know how to fit in taking care of me and combatting (sp?) the guilt. I feel lost. and bereft. The emptiness is the scariest part to me. I pray and I try to meditate. But all those symptoms described above make it very difficult. On top of that, my cat died yesterday. I was watching her physically waste away and my friend mentally and emotionally wasting! I am wondering how to create some semblance of balance. I know that I am useless when I am sleep deprived but the nature of my caregiving is the very thing depriving me of sleep. It’s a conundrum. Any words of advice or inspiration would be greatly appreciated.

    • Ann says:

      Hello, Cindy. What a selfless, good soul you are, but oh my gosh, who wouldn’t feel overwhelmed if they walked in your shoes for a week??!! First of all, how did you fall into the role of being your friend’s part-time caretaker? You, of course, realize that her symptoms will only worsen with time and her regression may occur over a period of several more years. Eventually, she will require round-the-clock care. If you could fill me in on any professional in-home care she is receiving, what kind of medical care she is receiving, that would be very helpful. Your friend’s husband and son obviously need assistance as well….could you get a hold of a social worker at the hospital/medical facility where your friend was diagnosed?? Someone other than you must step in and provide your friend’s loved ones with the help, counseling, etc. that they are requiring. Your friend’s husband can be of no help in his current mental state of mind, and he really seems to need some guidance.

      PLEASE, be gentle on yourself, Cindy. Do you realize how many people would not and/or could not take on the kind of responsibility you have for a friend?? I’m sure if your friend was lucid, she would tell you how much she has appreciated all you’ve done and how much she loves you for your dedication. I also think your friend would DEFINITELY want you to take appropriate measures to look out more for YOURSELF. You are obviously a very bright person, Cindy (Dummies don’t use words like “bereft” and “conundrum”!!), so for right now try to look at your life situation from a more intellectual and less emotional perspective. Does your friend have any other family members or acquaintances who can assist? Quite honestly, it sounds as if her illness has progressed to the point where she needs daily professional care that you should not be expected to provide!! A social worker would probably be the best person to sit down with your friend’s husband to discuss what kind of medical coverage they have and/or are eligible for-private health insurance, Medicare, Medicaid, etc. It sure seems from the symptoms you are describing, that your friend is not receiving adequate medical attention, and I would think (but don’t quote me) that she should qualify for round-the-clock medical care.

      I know nothing about you, Cindy, or your personal life, other than you are totally burning yourself out. You are taking on WAY too much, and you’re bright enough to realize this but feel that you can’t give up on your friend. You’re going to have to make some changes, though, so that you have the time for yourself that you deserve. My gosh, your cat died, you’re sleep deprived, you work 4 days a week. I honestly think you need to take some time to breathe, cry about the loss of your friend as you once knew her, watch a funny movie, etc. Is there a counselor, minister, other close friend whom you could talk to in order to work through YOUR feelings about “losing” your friend in such an agonizing manner??

      Please do fill me in on more…I will help in any way I can, and there are so many other wonderful people on this website who can assist you as well. You will probably have to get the ball rolling on your end by making some phone calls and having some conversations, but you need to have some caregiver weight lifted off of your shoulders :-) In the end, it will be better for you AND your friend if she is provided with more consistent care by the appropriate medical/nursing professionals :-) God Bless, and Don’t Lose Heart!!

      Much love, Cindy-
      Ann

      • Cindy E says:

        Ann, thank you for your kind words.

        As far as how I got into this role…I have been helping her with her son since he was born and it started out as me looking after both of them.After the diagnosis, she was still able to help get him breakfast but she was confused about the order of things and standing outside too early for the bus. Small things were falling away. Within a couple of months, she was no longer participating his care. She was barely participating in her own care. It was difficult to get her motivated to do anything but lay on the couch. Then the real OCD behaviors began and within four or five months she wasn’t even coming out to the bus stop anymore.

        I am not doing anything for her that she wouldn’t do for me! She would know better how to handle the obstacles and where to get help.

        It took a long time to get the diagnosis. So little is known about this disease, Ann. It’s almost as if the doctor (it took us two hospital stays, three neurologists and neuro-psychologist to get a diagnosis and we were lucky!) said she has this disease. You handle it and when it changes give me a call. Not quite that bad but that’s how it felt. So we-her husband, myself and my sister-just took things as they came up. Ok, now we have to get her meals for her. Now we have to remind her to drink. Now we need to help her in the shower and with going to the bathroom. We’ve sort of been flying blind this whole time. Diagnosis was Memorial Day weekend of ’09. One year and three months ago. It took us from February to then to get the diagnosis.

        As it stands now, there is no proffessional care in place at all. This is the biggest problem we have. Getting her husband to even make appointments for her. He just thinks we just handle it as it comes up. In June, They went to NIH for them to study her. She couldn’t perform many of the cognitive tests and she couldn’t keep still for the MRI’s, CT and PET scans. The CT (although marred by her movement) showed substantial progression of the disease from just a year prior. We knew it. We didn’t need any tests to tell us. But when they got home things had changed…again. She was no longer sleeping through the night and got more and more agitated. Over the summer, she started running on us so we are unable to take her anywhere. Then, after a big blow up on 4th of July (no pun intended) where I kicked her husband out of his own house with no shoes on and no keys to drive away, we got a little help. Her sister (she has three) came over just when it was all hitting the fan (she has taken Di’s place at her old job). She got the doctor to prescribe valium. It didn’t help much but it helped some. She also started coming around more and getting her other two sisters involved. Now they give her ambien for sleeping which helps somewhat. She still wakes in the middle of the night but there is always someone there to remind her it’s night and go back to bed. Now they are trying another alzheimer’s med for her agitation Namenda. The FTD forum says it shows marginal success. They tried aricept but it is rarely given because it works on plaque in the brain. FTD is not a plaque-related disease.

        I know the steps that need to be taken but I am not the one to take them. You are right about that. My sister and I are trying to reach him but if you push too hard he shuts down. He needs therapy and has actually said it and has taken no steps to get help. He is in such a state of denial. And it’s heartbreaking because she was his life. She saved him and now he doesn’t have her anymore. But he just can’t admit it. Calling a social worker, getting therapy, having non-family caregivers, removing her from the house…all make it real.

        I think my posting on this page or my cry for help,as it were, was about my frustration and the feeling that I am trapped in this cycle of…whatever this is and how I feel it taking a huge toll on me and SEE it taking a huge toll on her son, her husband and my sister(she is there on the weekends and works all week). Her own family can’t handle her for more than a few hours at a time. Her husband has thanked me on numerous occasions. Sent me text messages saying how much he appreciates what I’m doing. Just tonight, he told my sister that he wishes he didn’t have to rely on us so much but he doesn’t know what else to do. He feels just as trapped as we do.

        As far as doing things for ourselves (I am now including my sister in this) it’s so hard. By the time you leave there, you are physically and mentally drained. If I go there tomorrow at 6 am and leave sometime late after noon, by the time I get home I need a shower and a nap! Her husband was off two weeks ago and I went to my salon and begged them to pamper me (I am a hairdresser). It was one day out of what seems like thousands and I treated myself to reflexology afterwards and by Saturday morning I felt like a new person. But the time away made me dread going back there all the more. We vent to each other. It’s all we have. Not too many people can comprehend this until they’re in it.

        I know we need to start being more peristent with her husband. I have tried to get the ball rolling by making some calls but all these decisions ultimately fall on him. I have hit a number of dead ends when they find out I am not even related to her.

        I thank you again for your kind words and I will continue to struggle for those “stolen moments” of self-care!

    • Jean Fogelberg says:

      Dear Cindy, what you’re doing for your friend shows such love, loyalty, and respect. You are the best kind of friend a person can hope to have. You say you’re “only a part-time caregiver” (!!!!!), but the kind of unpredictably abusive illness your friend has means that whether you’re there for 2 hours or 12, they are going to be incredibly stressful hours. You have GOT to start taking a day for yourself – one whole day when you can wake up in the morning knowing that the day is yours. No work, no caregiving. This is not a nice little luxury for you at this point – this is a necessity or you are going to get sick. I know it won’t be easy for you, because you feel your friend and her husband depend on you, but as you yourself have come to realize, if you fall apart you’ll be no good to them at all. He’s going to have to get family; homecare; hospice; someone to come in on that day. Let him do it. This is not your job. He is her husband. If you have to, suggest he contact her doctor about recommending a homecare or hospice agency. This site is full of spouses who found a way to care for their husbands and wives all by themselves and would never have allowed a friend to endanger their health to help them.

      I’m worried about you – I can hear exhaustion and depression in what you wrote, and on top of everything else you’ve just experienced a loss and, as you’ve probably read on DLH, we all understand how devastating the loss of a pet is. It’s time for you to be a loyal, caring friend to yourself. If the tables were turned, what would you tell your friend to do? What would she tell you if she was her old self? Start on Monday. Tell them you can’t come in the following week, on _____day. That will give her husband time to arrange for someone else to come in. Unplug the phone. Sleep. Eat. Walk. Meditate. You’re going to feel guilty as hell, but it will get easier, and you will be taking a big step in the right direction for your own health. And, if you need a selfless reason to do it, as I wrote on the page above, you will be a better, safer caregiver to your dear friend. Easy to write, tough to do. But you can do this. ~ Jean

      • Ann says:

        Hi Cindy,

        I very much agree w/Jean’s recommendation about having your friend’s husband make arrangements for medical care when you let him know you won’t be coming to care for her as frequently. After all, he is her husband-for better for worse, in sickness and in health. If you become less involved, hubby will have to face the reality of his wife’s illness. I’m sure it WILL be difficult to not feel guilty, but just keep reminding yourself that this change will be healthier for both you & your friend.

        ~Ann

      • Cindy E says:

        Jean,

        When I read those words that you can “hear depression and exhaustion” it really struck me. It struck me like Dorothy’s house struck the Witch of the East! It all makes such perfect sense. But it’s hard to let go…especially for their son. When he was born she said to me “I can’t do this alone. You’ll help me make sure I don’t screw him up like we were, right?” And I promised. And just this second, as I wrote those last wordsI realize that what you say is true!

        A few weeks ago, a dear friend of mine was visiting from PA. It was the first time she had seen Dianna since before she was sick. I told her that I have this secret fantasy where I get appendicitis (without any horrific complications) so that I could be taken care of for a few days completely guilt free!!

        I will try to approach him again tomorrow about getting professional help. And then I will call my old therapist! If I don’t take care of me, I can’t take care of them. Thank you.
        Cindy

    • Jean Fogelberg says:

      Cindy, please pop over and read what Karen just wrote to Diane on the page: A NEW STORY – Diane C. You might want to print it to give to your friend’s husband. ~ Jean

    • char says:

      Cindy,
      First let me say how very sorry I am for your losses. The lose of your cat, is heartbreaking, and the loss of your friend, as you knew her, is just horrible. Your feelings of being lost, are felt by many of us, acting as caregivers. Everyday I try to make an hour or so to do nothing, surf the web, play music, dance in my kitchen, anything at all that takes the stress away for a while. I think you are pretty special to be able to do what you do, I hope you realize what a wonderful woman you are.
      Jean has some great ideas for the sleep deprived, check it out under “Sleep Aids”.
      I lost a very dear friend to breast cancer at the age of 44, she left behind 2 young sons. She suffered long and hard, it is so difficult to watch someone you love suffer. I think you need time to renew, refresh and review, your next step. Hope by the time you read this, you have gotten some rest.
      With much hope for a brighter tomorrow.
      ~Char

    • Joan says:

      Dear Cindy – I am so sorry to hear about your beloved cat and your beloved friend.

      My first experience with caregiving as an adult was taking care of my diabetic dog for four years. I gave her all of my time, energy and love – and it wore me out. Then I had another dog with health problems, and that did me again. Then I went through an abusive, toxic relationship that changed every part of my life. I just about died from severe depression, gained 100 lbs, have complicated high blood pressure, fibromyalgia and diabetes.

      I now have 4 cats and a great husband. He was primary caregiver for his late wife who had breast cancer for 15 years. As a result he is hypoglycemic and hypervigilant. We had caregiving responsibilities with our dads (parkinson’s and heart disease/diabetes), both of whom have recently passed. We are dealing with our elderly mothers (heart aneurysm and COPD). There are other major stresses going on that I can’t go into.

      I am providing some respite caregiving for “my second Mom” who has Alzheimer’s. We are providing consuming caregiving for a bachelor co-worker of ours (a displaced person from WWII) who has been diagnosed with ALS and prostate cancer. We are trying to get him into assisted living, with not much cooperation on his part. No other co-workers are stepping forward.

      I have gone down the road you are on. I am probably going down it again. I seem to put everyone else’s needs before my own. I am a caretaker at heart but I take it to the extreme. It is rewarding, and very unhealthy. That is why I am so thankful for Jean’s mission and everyone at DLH.

      Please heed the advice others are giving – just as I try to. You may benefit from counseling, along with medications to help with the sleep issue and maybe even depression. It is the only way I made it through, aside from listening to Dan every minute I could!

      You will make it through all this and be a stronger, even more loving person. Just please try to love yourself a little bit more and take some well earned time just for you. You are in my thoughts and prayers. Joan

    • Karen says:

      Dear Cindy, I am so sorry for the loss of your kitty, your friends condition and the pain & sadness you are going through right now. You are a wonderful caring, compassionate and amazing woman. The ladies are right though, this is too much on you. You need to take a step back and evaluate your situation. You cannot sustain a state of high stress for an extened period indefinitely because you will probably get physically ill yourself. We all understand you want to be there for your best friend and you can still do that, but you have to get them outside help as well. You have to find ways to relieve stress in your life which usually means “making time for you” whether it be long walks, shopping, reading a good book in a peaceful setting, going to lunch with your friends regularly, whatever, but you have to find time for YOU on a regular basis. I know it’s hard, but you have to do it. We’re here for you in the meantime and trust me, we know the feeling too and also realize that some things are easier said than done. Ann’s quote today was a good reminder to us that we have to make the best of each day, and also I love that saying too, “When life gives you lemons, make lemonade.” Maybe you will decide now will be a good time to take up a new hobby for yourself for example.

      Hope you feel better soon Cindy! Let us know! Take good care, Karen

    • Cindy E says:

      Nothing like looking back to gain a little perspective! Still struggling with this one! Re-read everyone’s wonderful comments looking for a glimmer. It’s hard not to stress about being overwhelmed! It’s hard to get motivated when you’re stuck. My fortune cookie tonight red “It takes guts to get out of the ruts”…I exhaled and crumpled it up and threw it away! And I’m an OPTIMIST!

      • Karen says:

        Cindy, how is she doing, her family and how are you doing? Is the family working with not just a mediocre but an excellent psychiatrist trained at working a lot with FTD patients? I find the best ones are those associated with the university hospitals as they are the ones with the most up-to-date and cutting edge medical field knowledge. There are medications that should be able to help control her agitation and make her more comfortable. Also, there are FTD caregiver support groups out there. Is there one locally in your area? I think this would be invaluable to you and her husband as well to attend. Additionally, there is also a national FTD Association. I spoke with someone from there once and they even have a respite program where they will donate money towards a respite stay somewhere for her (if that program still exists). If you guys are unfamiliar with this organization and want more info, I’ll get it for you, just let me know. There’s definitely help out there. Also, do you have another furry child in your life yet since you lost your beloved kitty? If so, tell us about him/her. We can’t replace them, but we always have room in our hearts for more love to give these wonderful creatures who give us so much more in return in their unconditional love, gratitude and admiration for we humans.

        I’ll be updating soon on moms status at the nursing home. They’re not calling me as often complaining, so I’m just keeping a low profile with them and keeping my Ombudsman up to date on everything so it gets documented. I think they realize they can’t kick her out unless they have something truly legitimate that they can prove, like for instance she physically injures someone or herself which she hasn’t done, nor has she ever done anywhere. They simply just don’t like her activity level. Apparently, this is no new phenomenon in the nursing home/assisted living world with regard to who gets in and who doesn’t. My Ombudsman used to work in one as an admissions director and always had to get past the admittance nurse to accept a patient. She found herself getting really fed up with her at one point, finally telling her, “look, not every patient can be a hip replacement.” But despite all this, the stats for getting into homes doesn’t sound anything even close to this scenario I’m going to tell you about in our neighbors country: my friend and her family are currently living a real nightmare in Montreal with the care of their father, a stroke victim with a still strong will to survive, who the doctors there have tried on numerous occasions to talk the family out of life-saving operations in attempts to convince them he’s going to probably die anyways. They have held their ground and he is recovering, beating the odds and ready to go into rehab. The facility near their house that is a very decent place they want to get him into is full and they said he can be on a waiting list for as long as a year to get him in there. Their alternative is to send him to another lower-grade facility with a much lower nurse-to-patient ratio while he waits for an opening, in other words for every 100 patients, only a hand full of nurses are on duty. It’s real interesting let me tell you. As a result, bribery & kick-backs are common place, moving patients up the list that need operations, etc. they’re finding out. So, I guess in my own personal opinion even though our system as in-pefect as it is since it has the private element and employees are sort of allowed to run the show before state agencies get involved, it still definitely sounds like the lesser of the two evils to me, as I was beginning to question what I thought would be best, but my mind is definitely made up at this point. There is accountability in place here when we need to utilize it, currently…
        Let me know how you’re doing Cindy, XO, Karen

        • Cindy E says:

          Hi, Karen. Dianna’s disease was far enough advanced that there wasn’t a whole heck of a lot the neuro-psychologists were willing to do with her. That’s why her husband got in touch with NIH. National Institute of Health was interested in her case because she is so young and it is such a rare disease with so little known about it.By the time everything was set for their visit, her behaviors had changed so much that they were unable to get her to be still for the tests they had to do and she was completely unable to follow any directions.

          We have been in touch with AFTD and they are a wonderful organization. In November of ’09 (six months after her “official” diagnosis) we went to a whole day forum in Manhattan. Her husband sat in on a lot of the business and estate planning type forums. I sat in on the support group and caregiving forums. At lunch they had this wonderful speaker named Teepa Snow and she was a complete inspiration. She really knows this disease inside and out from a caregiver’s perspective! I also sat in on one of her break-out sessions and what she offered was informative yet very disheartening. She predicted that within a year of diagnosis Dianna should be taken from the home because she had a young child at home (at the time he was only seven!) and it is not a great enviornment for children to be raised. Her husband didn’t want to hear that. Still doesn’t. And I don’t blame him for feeling that way. But his level of denial is really starting to hurt their son.

          He deals with his mother’s constantly erratic behavior-in and out of the bedroom, slamming doors, kicking their dog, cursing something fierce, and the crazy stuff like hearing sirens and she yells “Get that!” as if a phone were ringing. She rhymes and repeats the same sentences over and over. Complete and utter chaos. And yet he is compassionate and understanding and will say things like “She can’t help it. It’s the disease!”

          She is starting on some of the later stages of the disease. She is incontinent. She has to be guided during mealtimes or she will just spit her unchewed food out. She doesn’t take any kind of direction. We think that she just doesn’t understand what we are asking her to do. She will get up and down constantly. I try to feed her seperately and then give her a little something while we are eating. Otherwise we are chasing her down and trying to stop her from throwing things and spitting food at us.

          As far as support groups in our area…there are mostly AD support groups. The closest FTD support group is far away and it’s hard enough to get anyone to stay with her for any length of time. She was enrolled in a program called “Let’s Do Lunch” where she was taken to a rehab type place with day programs. It was geared towards the younger patient with early onset AD and patients categorized with “other” dementias. It was good for awhile but she started not taking directions from the people who worked there and then mid-summer last year she started bolting.They could not guarantee her safety any more and they had to drop her.

          Any time we take her out into the world, it is a struggle to get her to stay with us. She runs away. She does not look for traffic or anything. She does not recognize vehicles so she will try to get into someone else’s car if you can’t get to her in time. She has actually gotten into a stranger’s car when her son had game and her husband coudln’t get anyone to stay with her. She will stay in the car as long as the radio is on but she touches the buttons and turns it off or ruins the station and then she bolts. He found her someone’s car and the man was yelling at her and she had no idea he was yelling at her.

          We carry cards with us when we go out that sort of explain but people don’t get it. They look at her like she is crazy. I spent all my days off in their house last summer because she can get into a lot of trouble in the kitchen (or in any room) if she thinks something looks good to eat. Erasers from pencils, bubble bath, a packet of tissues. She usually spits it out but she dumps whold boxes of macaroni or bags of food that need preparation. She will dump out the sugar bowl on the counter and we don’t know why. We keep only beverages with covers on them because she will just walk up and dump out a whole glass of juice or a cup of coffee.

          I always thought that we should start a support group but there is so much involved that I know it will be something I will have to do “after”. There is no time now because all our time is filled with taking care of her.

          As far as adopting a new pet, I was just at a local pet store today. They had some beautiful animals up for adoption but they needed special attention or came from abuse and I just don’t think I have it in me. I will definitely adopt from a shelter but I am not ready yet. I would rather have a nice, healthy kitten that will be with me a long time like Baby was. A few years ago, I wouldn’t have even given it a thought. I have been doing this caregiving thing for most of my life.

          I am glad that you haven’t had much trouble from the facility where your mother is.

          I hope you are taking some time to take care of you.

          Peace and love. Cindy

          • Jean F says:

            Dear Cindy, I’m sorry to hear that Dianna’s condition has deteriorated so much, and that her husband is still in denial. What a huge load on you! What a sweet, brave little boy her son is – it’s so sad that these are the memories he will have of his mother. It’s probably best to get Dianna into a care facility so she can’t inadvertently injure him. Has her husband found a place that she’ll be able to go to? I’m just afraid he won’t face reality until he either has less help (you) or something really bad happens.

            This isn’t the time to start a group or adopt a kitten. You MUST keep your life outside of Dianna’s house free for rest – that means no responsibilities to hurry home to, no events to plan. Six months ago I heard depression and exhaustion in your comments, now I’m hearing resignation. That makes me sad. I don’t agree with that fortune cookie, it doesn’t take guts to get out of a rut, it takes guts to STAY in the rut for someone you love, even when it’s killing you. We know you have guts. What you need right now is a healthy dose of self-preservation, but you’re in so deep I don’t know if it will be possible for you muster that.

            What you CAN do, is to NOT take on anything new. Cats are wonderful, and pets are good for your mental health and blood pressure. But right now, just as Dianna’s home isn’t a good home for a child, your home isn’t a good home for a young animal. It would be a comfort to you when you were there, but then it would be alone the rest of the time. And in the midst of worrying about Dianna and her family, you don’t need to be worrying about getting home to feed kitty.

            Make getting a cat a treat you will allow yourself once Dianna is in a good and safe place. This will give you something to look forward to; something to balance out the sadness, guilt, and caregiver withdrawal you’re bound to feel when you’re finally forced to let your friend go.

            Dianna is so lucky to have a friend like you – someone willing to jump into her life rut to help. But at some point you have to realize that the rut has gotten so deep, if one of you doesn’t find a way to get out, you’re all going to starve down there. ~ Jean

            • Cindy E says:

              Jean, I am so grateful for your sage advice. I totally see what you mean about resignation. I HAVE resigned myself to this situation.

              So many people tell me that I should pull back and tell him I can’t help him anymore. “What would he do without you?” All I can say to that is that it is not about him. This disease is happening to Dianna, not her husband. He is deeply affected by it, as am I. But I do not stick around because he’s so great. I do it for her and I do it for their son. I could never abandon them. I do want to pull away but I am sucked in by the vortex because SHE needs me. I feel stuck. I AM stuck.

              If it were me, she would be right down there with me. Only she would probably have been able to dig a tunnel to get us out!!! That’s the kind of friend she was! She saw me through the many stages of my mother’s care. She was even my stand-in if I ever couldn’t be someplace for my parents.

              As far as the pet adoption goes, I decided before Christmas (my husband thought it might be a good gift for me) that I would not be adopting a pet until “after” things change…whether that means she is placed or we get in-house help, I don’t know. I hope that when this all comes to an end, I can be an advocate and raise awareness the way you have. I cannot tell you enough how much I admire and respect what you are doing for PC awareness and for caregivers EVERYwhere! You are an amazing inspiration and a vast font of hope to people like me.

              As far as this deep rut…don’t worry, I brought a cooler! In the meantime, I have DLH to give me hope, inspiration, comfort and friendship…and I have you to thank for that, Jean. So, thank you. I am humbled in your presence. Cindy

          • Karen says:

            Hi Cindy, Oh dear, when you describe Dianna’s behaviors I was reliving so many of my mother’s as well over the years, some of which sounded so similar too. That actually was one of the reasons I didn’t move my parents to my state sooner because I was so afraid at the time having a young son. Back then, my mom used to try and swipe peoples keys and if she got a hold of a set her goal was to go joyriding in someone’s car. How scary does that sound! Terrifying, right?! So, I was always so afraid if I had her at my house she might get a hold of my keys and take off and I would have visions of her backing over my son on his tricycle or something. So, they’re right when they said that it eventually would not be safe for a young child to be in the house with her. By the time I moved my mom here she had outgrown that desire to want to drive a car anymore and she stayed in her own apartment area we had safety-proofed downstairs in our daylight basement and my son was around 8 by then and not such a baby anymore. She had become much more subdued also, but she was now in her 70’s vs. her 60’s. You know, I only went to a few of the caregiver support groups myself because for me there was just limited time and I needed it to take care of my mom. I was looking more for information I might not be aware of more so than the support aspect. So that’s good you guys have been in contact with the right people, but at the end of the day, you’re back to square one, how is this going to help Dianna and the family because these patients require 24-hour care as they cannot be safely left alone? The biggest challenge for us was always how were we going to pay for it long-term? Once I realized she had to be placed, then I realized as I mentioned all ready (& still have the on-going problem with) which facilities were willing to take these patients as I quickly discovered they much rather prefer the very docile types if they can help it? It simply just makes the staff’s job much easier. Hopefully, in your area you guys won’t have the same issues I have encountered in my area and you will be able to place her in a great facility where she can settle in and be comfortable. Is Dianna on any anti-psychotic meds? There are 3 they like to use a lot: Seroquel, something that starts with an X and another. They also use anti-seizure meds as well to control agitation. I know you’ve mentioned some to me before Cindy, so forgive me if I’m being redundant. You mentioned the nuero-psychologists, but its the geriatric psychiatrists that are the ones that treat these types of disorders from what I’ve always understood. My mom is currently being seen by one in her nursing home that is such and he is associated with one of the local universities in this area. Perhaps Dianna is all ready on some of these types of meds. Another question in my mind is can her husband file for Medicaid on her? I don’t know what the resources are or even if it’s a problem or not. We have finally reached that plateau and are in the process now with my mom. If and when it comes to that, she will have to be placed in a nursing home before you can even apply. There are some Medicaid assisted living facilities that take them too which would be great if you could find the right one for her because she’s still so young, but the patient has to not make over a certain amount of money to qualify for those. It’s really nuts, but that’s the way it is! Even if you are 50 censt over, they will deny you which means you have to get a doctor to fill out an FL2 stating “skilled nursing” is required in a locked unit. ($$$) There are often waiting lists to get in these. Then you have to set out to find one. If you guys pick one out that you like, show up in person on a regular basis until you get her in. Call everyday and come by as well. I don’t know where you’re at in this process, but this is all what I’ve learned so far as I’m way ahead of you on this journey and what a road it has been. I can assure you and Dianna’s husband though, there is light at the end of the tunnel and you will have peace eventually, but if it’s only you and him only holding down the fort right now, you’re going to continue to be physically & mentally exhausted. You guys need to be healthy so that you can be there for Dianna to continue to manage her care and well-being. The memory care units are trained professionals with tons of wonderful, compassionate workers who will take excellent care of her and you guys will be able to see her as often as you like, including taking her out for drives, etc. Doctors will be seeing her on a regular basis. There will be all kinds of people involved in her care, not just you and husband only. She will be safe. I’m praying for all of you for the peace of mind you all need so desparately right now. Have to run to a basketball game now, but big hugs to Everyone, Karen

            • Cindy E says:

              Karen, thanks for all the great advice. Her husband talks about putting her somewhere but has taken none of the required steps to get the ball rolling. There are some decent facilities that I have looked into and they do take medicaid patients which she is eligible for but he has not signed her up yet…As far as meds go, she did take seroquel for awhile and it seemed to help with the agitation but it made her veeeerrrrrry aggressive so her neurologist has not took her off it. As far as geriatric psychs and neuro-psychs go, we were told by AFTD and also another specialist in Manhattan that neuro-psych would be the way to go. She met with one early on (in fact, I took her to that appointment!) and her husband only spoke with the doctor on the phone. He felt put off by her for some reason and that was the end of that! Not really sure what his reasons are for some of the things he does. Part of it is because she took care of EVerything in that house. Problem with the mortgage? Di was on it! Problem with health insurance? On it! Argue with a credit card company? Dianna was the go to gal! He is completely lost without her! We are at sort of an impasse when it comes to moving on to the next step because he is frozen where he stands. I keep praying and hoping and offering advice and making calls hoping for some kind of intervention. Divine or otherwise-I’ll take it. Thank you for your prayers and for your concern! Peace and Love, Cindy

              • Karen says:

                Hi Cindy, that’s really good news about the Medicaid; they have to process the application within 45 days from the date of application and accept or reject in that timeframe. Step one would be admitting her to a Medicaid facility and then step two would be for him to immediately go down to the local county Medicaid office and apply. He can make an appt in advance too and they will even help him fill out the paperwork there. No need to get expensive attorneys fees involved and all unless there are considerable assets to protect and the family is unsure how to go about doing it legally. They will issue a Medicaid case number that day which he will need to give to the facility she’s at.
                Reading about the dynamic of Dianna and her husband was total deja vu for me with regard to my mom and dad. My mom always wore the pants in the family, was the bread winner and made all their decisions. My dad was a good husband and father and helped out all the time with everything, and that was just how their relationship was. However, my mom led a more stressful life as a result of this as she was always worried about the finances. There were years when she was the only one working because my dad was so sick from Chrons disease. They were the types that never paid a bill late, but I always just assumed that was just how my mom and her personality was; she was considered a strong lady and my dad more of the type that kept things inside. One of my aunts and her take on all of this was that her type of personality and stress caused herself to get sick eventually. This is also the aunt by the way, that has dropped my mother from her life, so I didn’t have a healthy respect for her opinion as the years went by. In the end, who knows. I always thought biologically, the hypothroidism and the hysterectomy compounded with her not taking her recommended hormone replacements post-op may have had something to do with what happenned to her. Another theory could be her cholesterol which wasn’t high until later in life I believe, but both her parents have a history of that and her mother a history of blood clots, as does my mom; but again, she had these blood clots (happened two times in her leg) after her dementia showed up.
                Are you guys working with a social worker? If not, the county human services should be able to provide you one for free and maybe that person can get involved and help Dianna’s husband move forward in the right direction working as an advocate for the family for Dianna’s behalf. If I haven’t mentioned before, my mom’s name is Barbara. Dianna and Barbara no matter what will always be beautiful and amazing women to us. I’ll be going to visit my mom soon and I have a big, pink fuzzy robe to give her. She loves to get gifts and unwrap presents still, so I’ll have it all wrapped up when I give it to her. She’ll put it on as soon as she opens it. The other night I went to visit her and brought her a big, chocolate chip muffin and she really liked that too. She’s always smiling and laughing these days. She’s such a little sweetie.
                Much love, Karen

          • Toni Hicks says:

            Cindy,
            I have a friend who is 30 years old and is plagued with this terrible disease. He is actually a friend of my son’s–they went to school together. He had become a DOCTOR and was planning to pratice with his DAD. Then,he started displaying really strange behavior, not like him at all. He had been married a short time and his sweet wife didn’t know what the heck was wrong with him, so she left him. His DAD didn’t know(remember he’s a doctor), noone knew. Finally the dianosis. For about a year or so, the family was able to manage the situation. However, it just began to take a toll on them and they placed him in a very nice, secure facility. I know it was the hardest descision they had to make, but they really had no choice. From your posts about your friend,,,,,it’s past time. She needs to be someplace where she can be safe and where all of you can go VISIT and then go on with your life. We are sad for this young man who had so much to offer, but at the same time, we know that he is where he would want to be, if he were capable of knowing how difficult his disease is on all who are close to him. No, it isn’t fair, it has robbed him of his life as all of us have known him, but Cindy, it is what it is and it’s time for action. NONE of you can go on this way. Please have a heart to heart with her husband and help him find the appropriate facility for her. There are some wonderful places and the only good thing about this condition is that she really won’t know the difference.Those afflicted with FTD don’t know that anything is wrong with them(this is a blessing). Please consider my advice, because I’ve seen what this does to a person and it won’t get better. I wish you the best and I will pray for you and everyone involved. Please keep us posted—this is a good world we live in, but there are some really heartbreaking situations in it. We need to guide one another! Whatever you do, Don’t Lose Heart, we’re all in this together! Much Love, Toni

            • Cindy E says:

              Toni, Thank you for your story. I know what a difficult thing it is to watch somebody be physically in front of you and still disappear before your eyes. My heart goes out to you, your son and his friend’s family!

              I have had many heart to heart talks with Dianna’s husband. But he is the only one with the power to do anything about the situation and he thinks we are doing enough. He feels the need to stay in this situation because acknowledgement of any other scenario would be acknowledgement of the true impact of this horrific illness. I know it will only get worse. I am watching it with my own eyes.

              Sometimes I wish that there was a mechanism that we could switch off so we didn’t have to always be thinking of it. The blessing (if you can call anything regarding FTD a blessing) is that she is unaware. I keep trying to say to her husband “What would she do if this was me or you? What advice would she be giving?” He knows the answer but he just shakes his head. He thinks that she would do everything in her power to take care of that person which is what he thinks HE is doing. He doesn’t realize that she would have known when to say “Enough!”

              I know what it is doing to all of us but I also know that, until her husband makes a decision, we are all in limbo.

              I will continue to try to chip away at his resolve and I will continue to be there for my dear friend and her beautiful son. And I will continue to look to DLH for the support and friendship and loving advice that has helped me through this journey for the past year! Thanks again! Love and Peace, Cindy

        • Char says:

          Cindy E. and Karen,
          You both are really amazing women. For all you do, all the stress of care giving, all the time spent, all the pain and frustration, and sadness, you both have so much to give, and you do it beautifully here @ DLH.
          My valentine heart goes out to you both today, and all others caring for loved ones.

          ~Char

          • Cindy E says:

            Char, thanks for your sweet words. I feel like I bring everybody down whenever I talk about my situation. I am glad that I can come here and feel safe. xoxo Cindy

            • Char says:

              Dear Cindy,
              I am sorry you feel you are bringing people down, I think perhaps people are unsure of what to say to you about your situation. Maybe because what you are doing, is so wonderful, so unheard of in this day and age, that people are stunned, by your act of unselfish kindness. You will never bring us down at DLH,
              I look forward to reading your comments, and send out a big VDay hug to you, for just being you.

              ~Char

            • Joan says:

              Cindy – you do not bring us down. Your sharing is teaching us many important life lessons. You are safe here. Happy Valentine’s Day! Joan

          • Karen says:

            Thank you Char for all your love and encouragement you always give. Figuring out what to do next and the best way to go about doing it is always challenging for all of us and seeing our loved ones not whole is very sad and hard on us, but I feel that we caregivers also have been given an opportunity, a gift if you will, of being able to help someone we love that is in great need of our help. I loved that Jean reminded me what a great feeling it is to know when we’ve been able to help a loved one feel better. And it’s also the best feeling as well knowing that we can lean on one another here in Jean’s safe haven she has created here for us. Happy Valentines Day Char to an angel and another beautiful heart, you!
            XO, Karen

  3. Ann says:

    I think I’m getting a better feel for the guilt that you caretakers may feel. This morning (Sunday), we had a dedicated male Hispanic trio arrive to do some roof flashing (Don’t ask me to define roof flashing. Let’s just say there was no stripping of clothing on the roof!!). Anyway, the “foreman” of the three, Jose, was wearing a pirate like patch over his right eye, so I decided to chat a bit as he worked. Jose has been in the U.S. since 2001, when he moved here from El Salvador. His English is excellent.

    To make a long story semi-short, Jose started having bad headaches earlier this year. He learned he had a meningioma tumor behind his right eye. The university here is ranked very high in opthalmology and neurosurgery by U.S. News & World Report’s Hospital rankings. However, because Jose didn’t have health insurance earlier this year-and they considered his tumor to be a pre-existing condition-they wanted him to pay a HUGE some of $$ upfront before they would perform surgery. That made me very angry. Kirk, my husband, said that Jose chose to have the surgery in Illinois instead, and is making monthly payments to cover the cost. So sad.

    My husband is a radiologist, so he often reads MRI’s to locate tumors. He told me that meningiomas are normally benign, however Jose had told us that they couldn’t get all of the original tumor, because some of the tumor was wrapped around vital nerves. Jose’s meningioma sounds as though it’s actually an aggressive, metastatic tumor….he now has some new “spots” in other parts of his brain, and will need to continue radiation. He HAS, however, obtained health insurance, and apparently there is a chance that the surgery may be covered retroactively. A small chance, I’m guessing.

    However, this man’s outlook is so positive, and he just goes with the flow. He wears the patch, because right now he has diplopia (double vision) in his right eye. The doctors are unsure whether or not normal vision will ever be restored. However, Jose continutes to work very hard, supervising a crew of 17 other laborers. This fall, he will be taking a course (at the local community college) to further improve his English. This man has no self pity. I have no clue if he has any family members in the U.S. What an amazing outlook on life.

    Kirk and I talked about Jose’s situation after he left, and we both said the same thing….that any little problems we currently have, pale in comparison to this man’s. We were born and raised in the U.S., obviously under much better conditions than Jose’s. We have a roof over our heads, money to pay for clothing, food, and occasional vacations. Our daughters, Kirk, and I are basically healthy. I felt almost ashamed for the times I complain about stupid, little things. From now on, I will try to think of Jose when I start having negative thoughts about something in my life. Good food for thought.

    ~Ann

  4. Karen says:

    I just read this section and want to thank Jean and everyone else who responded. I don’t think we can ever hear those words enough times to remember to take care of ourselves and also to remember how lucky we are if we have healthy children. Lately, my health has been on my mind a lot because I know I am not eating enough of the healthy foods and I am not getting enough exercise either. I’m always too preoccupied during the day with taking care of my mom’s needs and I put myself last on the priority list. It’s my goal though to make some progress in that area this summer and the words of encouragement are inspiring & much appreciated. After I read the topic, I went and ate a fresh orange! I will also hug my child a little longer tomorrow when I see him after he wakes and will pray as always for his continued health and the health of all the children who need to get well. We too have been hit hard with cancer in our community as we have experienced in my son’s school with both classmates and parents with cancer passing away and we pray for them always. I’ve noticed being a caregiver to my mother and the accompanied stress that sometimes goes along with that job that I sometimes have limited patience with my son and it does bother me that it happens sometimes. He is such a happy, vibracious, beautiful child with my late dad’s sparkling blue Paul Newmanesque eyes. He tells me he loves me everyday. Tonight, he played me a piano concert of at least 10 songs that he taught himself by ear on his own and I just sit there in amazement and listen. He’s only 10. I asked him to begin with “Half Moon Bay” and “The River” and then he did some of “Sweet Magnolia” because he knows how much I like Dan’s music. Then, he continued on with Coldplay’s “Clocks” which he can play perfectly like Chris Martin’s version and then 5-6 Linkin Park songs, his favorite group, after that. He was even singing the words to them as he played! I remember reading one of Dan’s interviews where he said he took piano lessons from 6-10 years old and then after that played by ear. I have to keep that a secret from my son who would love to hear that and quit his piano lessons, LOL! Those Dan songs were some of the first ones that he started playing by ear on his own over a year ago and after that he just took off from there. I thank Dan for the music. He learned so much by listening to those melodies he connected with. I’ve just been feeling especially proud of him tonight and reading the sad stories of the sick children just serves as a constant reminder of how precious life is and how lucky we are to have our health and Jean is so right, we must do everything in our power to stay healthy not only for ourselves but for our families who love us and depend on us. They are like our lifelines as well to continue on and stay healthy. Rory’s dad can play piano by ear and also his grandmother that we take care of who is stricken with Alzheimer’s was able to play beautifully up into 8 years in to her condition and even though she cannot read the notes anymore, she still sits down at her piano and enjoys it and her eyes follow along with the notes as she turns the pages and she does her own version now. She’s lost her voice, her dignity and independence but she hasn’t lost her love of music or her smile thankfully.

    • Ann says:

      Karen: Hello! I’m not sure if I’ve previously read any posts from you, but I was very touched by this one :-) You sound like a very loving, sensitive caregiver, daughter, and mother. I have 2 daughters, so it’s interesting to hear from someone who has a son (by the way, love the name, Rory. Irish names (for boys) and French names (for girls) are some of my favorites). Glad to hear you’re starting to implement some things for yourself-so that you can stay healthy and refreshed. I can relate to sometimes losing patience with your child, so don’t be so hard on yourself….there’s no right or wrong way to parent. When I get short with either of my daughters (ages 16 and 7), I’ve learned to do the following: apologize. I think it’s great for children to learn that adults also make mistakes, which they regret. So when my daughters were younger, I’d simply say, “I’m really sorry (yada, yada, yada). Big people make mistakes, too. I took my stress/anger, etc. out on you, and I’m really sorry. I love you….will you forgive me?” Now it’s
      become something like, “Adults screw up, too….” I’m sure your son would totally understand if you explained that some of the stress that builds up caring for your mom gets taken out on him. He sounds like a pretty wise young man, who obviously loves his mom :-)

      I’ve been fortunate to not have a close relative with Alzheimer’s, but I’m sure it must be extremely difficult-physically and emotionally. Does it sadden you do see your mom lose some of her memory, skills, etc., and perhaps have some changes in mood? I just know that I’ve had some difficulty dealing with the changes in my dad after he had a stroke in 2007, but I think dealing with progressive decline-that gets worse over time-has to be even more difficult. I don’t mean to bring you down, because I’m sure you’re well aware of what you’re facing, and I just have to say, bless you, Karen, for loving your mother so much. I am so touched by the bond that Grandma and Rory share on the piano. Your son just sounds like such a sensitive guy, and I think it’s so cool and mature for a 10-year-old boy to play songs for his mom and to be willing to help in the care of his mother.

      Karen, you are obviously doing a great job, raising your son, because he sounds like he is thriving….and so talented. I’m sure Dan F. would be proud of Rory’s talent on the piano, but would probably encourage Rory to keep up w/the lessons! Give yourself a big pat on the back. When Rory gets to be older, I’m sure both of you will look back on this time and realize how much you gave to each other and lifted each others spirits!! I will say a special prayer for the 3 of you and close with the following quote, which I have always loved:

      One Hundred Years from now
      (excerpt from “Within My Power” by Forest Witcraft)

      One Hundred Years from now
      It will not matter
      what kind of car I drove,
      What kind of house I lived in,
      how much money was in my bank account
      nor what my clothes looked like.
      But the world may be a better place because
      I was important in the life of a child.

      Much love, Karen-
      Ann

      • Ann says:

        OOPS!! Meant to say that it seems so mature that your son is willing to help in the care of his GRANDMOTHER :-)

        ~Ann

      • Karen says:

        Hi Ann, thank you for your sweet words and I love the excerpt, such true words. I also love the advice you gave with how to talk to our kids when we end up losing patience with them, I think I will share this e-mail you sent with my son because you said it so well. I’m sorry to hear about your dad and his stroke, but am relieved for you that he survived it though and is still with you. My brother was not so lucky and at age 48 left behind a wife and 4 beautiful daughters that all adored him and a devastated sister, myself, as well. Regarding my mom, it’s a very strange disease this Alzheimer’s to witness there is no doubt, but it too is a gradual process, so you get used to the changes gradually as well – sort of. It’s indeed a tough process to go through though knowing your old mother is no longer there and a new version has replaced her. I simply miss my mom and all her nurturing ways, I don’t have that anymore, the tables have completely turned. She had 2 sons and she said she always wanted a daughter, so she had me, her third child. It was a good decision on her part and maybe one of the reasons I exist as in my purpose in life in addition to being the mother of my amazing little son and wife to a wonderful and loving husband and father. My mom always had a strong and dominant personality, but she was still always a loving and caring mother, wife, daughter & sister to her family. The new version is very sweet, not aggressive at all and just loves to eat and play her piano when she feels like it and get in her bed. She’s childlike. I’m grateful she doesn’t have any strange tendencies like hallucinations, sleeplessness or aggressive or angry behavior. I’m also grateful to still have her with me even with her dementia. She got to be a grandmother to my brother’s 4 girls and they had so much fun with her. She was always buying them things of course and then she would also make additional special special time with each one of them or take 2 at a time and take them everywhere with her: the beach, vacation, the movies, shopping, sleepovers at Grandma’s house, etc. She was an excellent grandmother. When my son was born she and my dad drove up to NC from FL to be here and were at the hospital when he was born. My mom got to rock him, change some of his diapers and gave him a bath and went to see him at some of his little toddler classes for a few years after he was born, but each year that passed she was going through more adverse changes and slipping away more and more. With each traumatic event, she would always get worse that being from the death of my brother and then my father. Fortunately, my son’s other set of grandparents are both alive and still very vibrant and they adore him. Grandparents play an enormous role in children’s lives. My own grandparents, my mother’s parents, are both still alive and in their 90’s and doing just fine living independently still and as far as I know still handling all their own affairs on their own as well. She also has 2 sisters who are healthy and no one in that family has any sign of dementia, so I don’t know what went wrong with my dear mom. My grandfather was well into his 80’s when his own mother passed away. Can you imagine being that old and you still have your mom alive, isn’t that just the most wonderful thing! We should all be so lucky.

        Last night my son played me a song called “Leave Out All the Rest” by his favorite group Linkin Park. Here’s a few lines from the chorus. He has all ready begun to teach me things now.

        [Chorus]
        When my time comes
        Forget the wrong that I’ve done
        Help me leave behind some
        Reasons to be missed

        Don’t resent me
        And when you’re feeling empty
        Keep me in your memory

        Leave out all the rest
        Leave out all the rest

        Enjoy your wonderful family and those 2 beautiful daughters of yours you are so blessed with Ann and I will pray your dad improves or holds steady. My mom had a stroke a few years ago from being put on Seroquel (an anti-psychotic) erroneously and too high of a dose and it affected one of her hands, but bless her heart she played her piano and made a full recovery regaining total control. So hopefully, your dad will be able to heal and get better over time too as many stroke victims do. Hugs, Karen

        • Ann says:

          Hi Karen!!

          Have been busy, but wanted to let you know how much I appreciated your response :-) I’m glad that you felt comfortable writing about your brother’s stroke/death at age 48. It sounds like your own father died after your brother (??) How tough….life is so unfair sometimes. I’m so sorry that you, your parents, grandparents, brother’s wife & 4 daughters all had to deal with the death of a young, very much loved man. Sometimes life just bites, doesn’t it? I’m so sorry, and wish that I could say something more profound. I guess, since I will turn 50 this year, that I’ve also experienced/been strongly impacted by the early deaths of family members and/or friends. Like you, I’ve just tried to grieve and then move on, being grateful for the positive things and the people I love who remain in my life.

          I’m so glad that you have a loving husband and son, Karen, and that you’ve experienced joy in caring for your mother :-) You really sound like a special person!! And your maternal grandparents…what troopers to be both be alive and self-sufficient in their 90’s… bless them :-) Nonetheless, they and you obviously miss your mom, as she used to be. I’m so sorry your mom’s condition (Alzheimer’s) has been a kick in the pants for all of you. Be assured that all of you are being thought of and prayed for.

          Thanks for asking about my dad and his stroke. Dad had never been hospitalized prior to his stroke at age 79. Pretty amazing. However, he had not been feeling well the summer prior to his stroke in Oct., 2007. He kept complaining of having some abdominal pain/”sour stomach”, but all of the tests kept coming back normal. My mom was convinced that he had pancreatic cancer, because he had a history of heavy smoking. Thank God that wasn’t the case, but it even took a few days after the stroke for the doctors to determine that Dad had an undetected cardiac condition-atrial fibrillation. So now he takes medication for this, and is also being treated for sleep apnea. Fortunately, we had a nicoderm patch put on him shortly after he was admitted to the hospital. The combination of the patch and probably the damage to the left side of the brain completely quenched the desire for cigarettes. Amen!!! Before Dad could even eat again, he craved coffee, but no longer cigarettes (usually the two went together). He hasn’t smoked now for almost 3 years, and I do think the stroke probably had some impact on decreasing the craving for nicotine.

          For an 82-year-old man, Dad is doing very well. The stroke is only noticeable in that sometimes he has aphasia-related problems (can’t quite find the right words, forgets someone’s name, etc.). However, as my 85-year-old aunt, a former nurse, has said, “That’s typical of ANYONE who’s in their 80’s.” So true!! My dad’s greatest medical issue has been his profound hearing loss. If you can’t hear well, so many aspects of your life are obviously affected. Dad first started having hearing problems during the time that he served in the Korean War-in a tank batallion. Back in the early 1950’s, there was obviously no hearing protection for soldiers in the tanks. My dad’s hearing has become progressively worse since he returned from Korea in his early 20’s, and the VA has finally acknowledged the impact my dad’s service for his country has had on his hearing. My mom-almost 80-is very hardy, so, all in all, we are blessed.

          Thanks again, Karen, for sharing so much w/me. I’m so glad that you remember your mom spending quality time with your nieces and your son, when he was younger. Hang on to those memories, and enjoy her as she is now-different, but sweet and vulnerable. Bless you!! Love, Ann

    • char says:

      Hi Karen, Wow, what a talented beautiful child your son is, and at such a young age. It is simply amazing the piano talents he has, and Dan’s songs, ah…. heaven on earth. Does his playing help your stress? I do hopeso, and I hope you make time for yourself, so that your patience will not get on the low side, as mine does at times. I think by taking that one hour a week, we as caregivers can feel refreshed and ready to meet another day. I hope this comment, finds your mom well, and you continue to give her a better quality of life. Give her a smile from me, stay well and of course DLH.
      ~Char

      • Karen says:

        Hi Char, so great hearing from you as always. Thank you for the lovely complements regarding my little piano player and yes, I just sit there with my jaw agape watching him play all these complicated melodies by ear he’s figured out on his own. The first time, I heard him playing a Dan song, I couldn’t believe my ears. It was the Twin Sons Theme and then he started playing other Dan songs and he even composed his own first song last year all ready and played it at the big spring recital that year, he was the only one out of 60 kids to do that. This year he played Coldplay’s “Clocks” and was the only one to go up there without the sheet music. Do I sound like a proud mama, or what, LOL! I knew something was up when he sat down at my piano at age 2 or 3 and figured out how to play “Twinkle, Twinkle, Little Star”on his own!!

        I’m really going to continue to try and make progress on myself. I went to the pool with my husband and son yesterday, we went out on our new wave runner on the lake this weekend and I ate a salad only for dinner last night. I also decided since I don’t make it to the gym hardly ever, I’m ordering the Zumba tapes I’ve seen now on tv that I’ve been hearing my friends talk about so much. You’re right, we just have to make the time for us somehow.

        How is your dear husband and mom doing? You have a very full plate and my heart goes out to you. I hope you’re also making the time for you & managing to find those great summer sales I know you probably love to go to. I just started thinking about fall (decorating) and how I would love to get everything done early this year which means I probably need to start now at the snails pace I do things by these days! Always tons on my to do list, but mom and her affairs always supercede all else. I always say I need to go back to work to relax! Hugs, Karen

        • char says:

          Karen, you are so nice to ask abou tmy mom and husband, both are stable now, thank God. Your son is a wonder. isn’t he! just brought tears to my eyes with the lyrics to that song, thought of your mom, and all of those in same situation. You are doing an amazing job. Try to take one day at a time, and as you do, and you begin taking better care of yourself, you will feel better about everything trust me, been there, done that!!!
          What a great mom, wife, daughter, caregiver you are, you are amazing, believe it, take care and you know the drill….. DLH.
          ~Char

  5. Susan says:

    Today was a wonderfully hot but beautiful day. Spent it with friends with our feet in the rolling waves, despite the 100 degree heat. Talking is so therapeutic and knowing that Ellie’s life and all of those mentioned so kindly here, were beautiful lives, no matter how short they were. They are awesome heroes and have left wonderful legacies and touched your lives. For this I am very grateful. And Ann, I have a whole playlist on my IPOD of nothing but Dan F. I am not sure there is a tune out there that he did that I do not have. His music is very comforting and soothing, even in my saddest moments. We all are bearing our crosses aren’t we, some heavier than others, but I feel my load is lightened with the support of all of you and my friends. I thank you again!! Blessings-Susan

  6. Susan says:

    thanks everyone for the kind words. Jean, you always make me pause and think, next to my friend Laura, you are my new voice of reason. But today is a new day, the sun is shining and yes, more lives will be saved and even new lives brought into the world, and the circle of life goes on. I remember watching Randy’s last lecture and just cried, thinking Lord, would I ever have that kind of courage. What an awesome legacy to his father. That is something that lives on. I gather the water and sand will be quite warm today. We have had record breaking heat here in Central Florida, in the 100s all week. So I will be enjoying that. Have a good weekend everyone and again, thanks for listening. As you can tell, I don’t do well with death sometimes, ever after taken a college course on “Death and Dying.” But I know there is nothing we can do to stop it. Hugs, Susan

    • Ann says:

      Hello Susan,

      I hope you are enjoying the water and the hot Florida weather, as I am writing. I just reread your bio, and I am amazed at the kindness of heart you must have….to be spending your entire adult life caring for others. You realize that many people out there wouldn’t be willing and/or able to take on all that you have. You are obviously a gem, and I’m glad that you are surrounded by some supportive people, who reinforce that. I pray you are able to find some time for yourself-even short breaks-to revive your body & spirit :-)
      Maybe listening to a little DGF music now and then??!! If you’ve not had a chance to enjoy the song, “Over Peoria”, the link is below. I just stumbled upon it several months ago when doing some searches for DF music on youtube. It’s such a soothing song and provides wonderful memories of Dan’s life. What an act of love by his friend, Robert (the singer). Enjoy, and God Bless, Susan!! ~Ann

      http://www.youtube.com/watch?v=pqnyqKAuntE

  7. Susan says:

    Wish I could be joining you all in Peoria, but I will be there with you in spirit. I don’t know what’s going on the world these days, my faith has been shaken to the core, but this site has brought me strength and comfort this past week more than anything. Sadly, an 8 year old little girl lost her battle with rhabdomyosarcoma this week. I did not know her or her family, but following their journal on Caring Bridge. A friend of mine’s 7 year old nephew is breathin his last breath, already brain dead. Two young lives, not yet starting to live and gone. Thru these two events, I have talked to more people who are caregivers and thru our conversation, I have recommended this site to them. I hope they visit and I hope it brings them the comfort, peace and hope that I get from it. Tomorrow at 1 pm, EDT, we will be releasing pink/white balloons into the air in memory of Ellie, or I should say, in honor of Ellie. Thanks so much for this site Jean and to all of you who visit with words of encouragement. While this has been a long, hard week, I too am taking a bit of time for myself and visiting the breezes of the beach tomorrow with my girlfriends, a time to reflect and just wind down for a couple of hours. Thanks for listening and Blessings and hugs to you all!! Susan

    • Jean Fogelberg says:

      Dear Susan, rest assured, the world is spinning as it always has. I can’t say it any better than Molly Fumia: “Some of my friends are uncomfortable with death. I don’t blame them, because we work hard to keep death hidden away. Despite the fact that dying is happening all of the time, we choose to believe it isn’t there. Yet only with familiarity comes understanding. I have been brought close to dying by someone I love, and we are getting acquainted, death and I. I will never be as afraid as I used to be. Giving death a place in my life is healthy for my living.”

      Children die…but much less often than they did 100 years ago. When you get too sad thinking of this lovely child who died, and when the world seems very dark, try to remember the thousands of children who are saved every day in this world of modern medicines, and know there is good in the world. Release your balloons, honor Ellie, walk in the water, hug your friends, feel the sun on your face and be grateful. It may sound selfish, but when I hear about a young person dying far too young, I’m reminded that my beautiful husband lived for 56 years – and suddenly it seems like a long time. ~ Jean

    • Ann says:

      Dear Susan, I am genuinely saddened that your heart is so heavy right now. As a former nursing student and pediatric nurse for a year, I can relate to how unfair it feels to see these special little people die. I love Jean’s quote of comfort (below), and I myself appreciated her beautiful reminder that childhood death occurs much less often than a century ago.

      Looking at your grief from a “flipped” perspective, my first response to your posting was to think of 8-year-old Dylan Pausch (“Last Lecture” speaker Randy Pausch’s oldest child). Perhaps you’ve heard/read that little Dylan, with Mom, Jai, by his side, has recently been meeting w/Washington lawmakers, urging them to increase funding for pancreatic cancer. Jai Pausch was quoted as saying that she feels this opportunity helps her son be able to say, “Wow, I can do something…maybe I can’t bring my dad back to life, but I can help other people.” I think Dylan is handling his grief courageously, as his father would have wanted. It certainly wasn’t fair that Randy Pausch was only 47 when he died. And even though I was so saddened when he passed, I also felt a sense of calm, well aware of all that he taught millions of us-including his beloved children-about LIVING!!!

      Bless you, Susan, for helping children to face their death or the death of a loved one by providing them with love, comfort, and the courage to reach the end in a state of peace :-) I hope you enjoy your much-deserved relaxing time this weekend…

      Love,
      ~Ann

    • char says:

      Dear Susan,
      Such heartbreak, losing a loved one, a child, how does one get past that? My dear friend who passed at 44, her Mom (88 yrs) lost two children, one at age 8, after he was killed by an auto.. and then of course years later, when my friend died. When asked how she did it, how do you go on? she replied with “how can I not, it’s not my choice, my faith teaches me that this is part of a plan, and I can not change it”. We mourn as part of the process, and we question, as we are only human. But we go on, as we must, there is a plan, we just can not be privileged to it, at this time. My thoughts and prayers, Susan (that was my friend’s name) are with you and the families of the children. Glad you are taking time for yourself, you must, hope the sand is warm beneath your toes, and the tides are with you.
      Stay well, and don’t forget sun protection!!! :)
      ~Char

    • Joyce says:

      Susan, What a difficult week for you… Maybe once you release the balloons you can release some of your sadness and send inspiring messages for your friend. Last summer a student of mine who I had in class for two years in elementary school died from inoperable brain cancer. She was a beautiful, creative, and athletic teenager who had wonderful parents and family. I was allowed to see her in ICU for a brief time and be in touch, and it was overwhelming to see her surrounded by treasures from her friends and photos. Any hospital wing with very sick children can bring you to your knees and makes you hug every child you know even harder.
      Many years ago when I was around 20 my father had a very rare form of cancer and had to have his chemo in a hospital for children in Boston. He wouldn’t take about it much, but I remember him telling me that he it was hard knowing children were going through what he was going through, and that he had led a full life and that they may not have that chance. He told me waiting with the other young patients for his treatment was the hardest part.
      I was the first of my group to lose a parent and I thought it was so unfair. My father died when I was 24 and as I got out in the world I came to realize how grateful I was to have him that long. As I broadened my horizons and talked about death with others I realized that care taking and death at some point will be an experience for so many. This thinking of course has taken many years…
      It brings me back to my student and ICU. My experiences with cancer with my mother and father allowed me to walk in her room and be the best self I could be. For me this means not crying and blabbing mindlessly. I wanted to be a better support for my student and her classmates. My heart really went out to 15 years olds trying to understand the impact of illness and death. They were scared and just devastated.
      Any of my own experiences didn’t mean that I cried any less or had any better understanding on “how could a tumor find its way to such an amazing girl?”
      Susan, Reading your posts and the ones that followed allowed me to articulate what I have been trying to process about losing such an amazing student who brought such light to my world.. I am sure there is more to come …
      Glad to hear you will be with friends and having sometime for yourself.
      Thank you to Jean for the quote. I will be ruminating on that one for awhile.
      Best to all, Joyce

      • Joyce says:

        Just re-read my post. Just had to clarify. I meant :
        I am sure there is more to come….. as in, my feelings and thinking..
        I hope that isn’t more confusing…
        I need a proof reader!
        Joyce

  8. char says:

    As of late, I have read so much about caregivers, our burn out and health etc.,and so many times, I go back and reread the extremely important and informative information, that Jean has provided here for us. And every time I do, I stop for a moment and say… “Char, this is you, you are/have experienced this. As far as making time for myself and my heart I always said I would TRY , but never thought I needed to or could do. And then one day it hit, like the proverbial ton of bricks, I have to make time for myself, as Jean stated; start slow, an hour a day, or week, but it must be done. And yes, it came about because I was tired, so tired that at times, I forgot, lost track of what I needed to do, etc. , all the things that Jean has listed.
    So I end with, I am taking time for myself,and my heart, as we both will be attending the DGF Memorial Celebration in Peoria, and I will be a better caregiver, and I thank you, Jean for your insight.
    ~Char

  9. Richard Lambert says:

    Grief: A short poem written for a close friend who took his life in October 2009: “Is it you”?
    Is it you…
    The black bird above that soars effortlessly through the sky?
    The sweet sound of the wind finding its way through the trees?
    A lone flower in a forgotten space that beckons for your gaze?
    A feather found lying on the ground ?
    The sun that warms the spirit and soothes the soul?
    The endless sea that seemingly sings as the tide ebbs and flows?
    The gentle smile of an aged stranger?
    The touch of a blade of silky grass?
    That one special bright star that first appears in the early eve and is last to leave the sky in the early morn?
    The sound of wind chimes as they welcome a gentle breeze?
    These simple things, seemingly “signs”, symbols, and more, which happen ever so often…are they you?
    Truly my heart tells me “yes” it is indeed “you” and “your ways” of reassuring that you’ve never left me and that I’ll never be alone…and that the connection is still there and always will be…
    Best friends in life, best friends now, best friends for all the “tomorrows” yet to come & best friends when we meet on the other side…
    Yes…IT IS YOU…you are still with me!

  10. char/cm says:

    As of late, I find myself with no patience, (excuse the pun). I fly off in a rage, and now I am realizing what the problem is. Thanks again Jean, we have to take care of ourselves, or will become unable to care for our loved ones. :) Asking for help is not the toughest part, so it should be something I think I can do… today!!!!

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