Don't Lose Heart | Caregivers Caring For Caregivers

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CAREGIVING, ONE DAY AT A TIME

The term “caregiver” here refers to unpaid family, partners, friends, or neighbors who provide care or assistance, full or part time. Don’t Lose Heart is for all caregivers:

  • Present caregivers who are currently caring for an ailing loved one.
  • Past caregivers who are trying to recover from their ordeal and/or loss.
  • Future caregivers, who are seeing the signs and realizing that soon they will have to do some serious decision-making.

If this is your first time caring for a loved one, it can be daunting and scary. But you can do this. All that’s needed to be a good caregiver is the desire to help and give comfort. The rest you’ll learn, one day at a time.

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THE TOOLS YOU NEED

In the left sidebar under “Information” you’ll find articles and links about:

  • Getting in-home help so you can have a much-needed break.
  • How to find a full-time care facility and knowing when it’s time.
  • What Hospice is really about, and how they can help, even years before “the end”.
  • Getting financial aid or starting your own crowdfunding page to raise money for expenses.
  • Pain relievers and sleep aids – what’s in them and which one will work best.
  • Wills, living wills, and trusts – the differences, and the importance of having one.
  • How to use the internet to find treatments and clinical trials.
  • Dealing with your emotions, and staying healthy…

…and much, much more. We’ve scoured the internet to bring you the most pertinent information from well-respected websites and organizations.

Further down in the left sidebar you’ll find “Our Stories”, where we share our own personal stories so you can learn from us, and so you will realize that even though you feel cut off from the rest of the world, you are not alone. There are many of us out here who are going through the same intense, frightening, draining, isolating, sorrow-filled days and sleepless nights.

We’re here to relay information, to support you and encourage you with our own experiences, and to share lessons we learned along the way. Or just to provide you with a place where you can vent your fears and emotions among others who have felt the same things and won’t judge you. Or, you can stay in the background. Most of our readers don’t comment, they just read the posts and comments, and that’s fine too.

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THE EMOTIONAL AND PHYSICAL TOLLS OF CAREGIVING

Caregiving is both scary and rewarding. Scary, because you never know from day to day what will be required of you. Caring for another person is a big responsibility. You want to do everything right; your worst fear is that you’ll make a mistake and add to their pain. Rewarding, because there’s nothing like the feeling you get when you’ve been able to ease a loved one’s pain. Having them smile at you and say “I feel so much better!” is, well, there’s just nothing like it. It fills your heart with joy.

The stress of caregiving can take a terrible emotional and physical toll on the caregiver. Depression, heart disease, hypertension, and Type II Diabetes are just a few of the conditions common among primary caregivers. We want to make sure you’re aware of the hazards, the precautions, and the options open to you so you can stay as healthy as possible while you and your loved one navigate this new road together.

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THE NATURAL CYCLE OF LIFE

There was a time when families lived together; if not in the same house, then on the same property or in the same town or village. Familial caregiving was a given – if a family member got sick or injured they usually died at home, surrounded by family and friends, and their body stayed in the house until their funeral – the whole family was involved in their care and children grew up witnessing the entire cycle of life from birth to death.

These days family members often scatter to wherever jobs, school, weather, cost of living, or whims take them. That, combined with modern medicine, longer life spans, and retirement living options, have made caring for our loved ones, and their inevitable death, something we rarely think about until someone becomes very ill or can no longer do everything for themselves.

In our modern culture, disease and death are usually dealt with in hospitals and are discussed in hushed tones and whispers so that, rather than being accepted as a natural part of life, they become a frightening mystery that children must be shielded from. Consequently, when the time comes and we’re confronted with the death or prolonged and painful illness of a loved one, we are frightened, traumatized, and unsure of what to do.

It can be quite a shock to suddenly find that someone you always thought of as invincible is now dying or depending on you for their very survival. And if you don’t live in the same town, city, or even the same state, someone is going to have to make some big changes.

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WE’RE HERE FOR YOU

Sometimes just knowing that others are facing the same challenges, doubts, fears, frightening experiences and “selfish” thoughts and resentments can lighten the load a bit. We aren’t doctors, social workers, or health professionals – we’re some of the 52 million caregivers who are providing care every day to someone aged 20 and over who is ill, disabled, or dying.

Use the comment boxes at the bottom of each page to let us know what you’re going through. Or go to the Contact Us page and send us your story and we’ll post it on a separate page. Before long you’ll have an answering comment from compassionate people who want only to encourage and comfort you, and when appropriate, to offer the wisdom of their own experience. By writing your story you’ll also be letting some other person who is in a similar situation know that they aren’t alone.

We hope you’ll feel comfortable and safe here and that you’ll realize you aren’t alone in what you’re experiencing. And we hope you’ll come away feeling lighter and more sure of yourself in your role as a caregiver.

Be well, and don’t lose heart.

“There are four kinds of people in the world: those who have been caregivers; those who currently are caregivers; those who will be caregivers; and those who will need caregivers.”
~ Former First Lady, Rosalynn Carter

“Don’t Lose Heart” by Dan Fogelberg  Click arrow to play

 

Guidelines: Everyone is welcome and encouraged to write here. All we ask is that comments be relevant to caregiving or the current thread topic, to keep the exchanges focused and helpful. Because of the high volume of spam comments we receive, all comments must be approved, so they will not show up immediately, but usually within a few hours. We implemented these guidelines to keep you, dear readers, safe and comfortable. Thank you for your understanding.

 

1,181 Responses to WELCOME

  1. Beverly says:

    I have finally hit the wall. I am my caregivers caregiver. My Mom has severe sciatic nerve pain that keeps her from walking…she can hobble to the bathroom and the kitchen but she just about cries every time she moves. I am in my 3rd year of chemo and I am sick a lot, weak, so exhausted… I try to put the crock pot to use so she has a hot meal everyday. We don’t see her doctor until August 13th. That is the earliest. I had to do a one man carry to get her down her steps to the car for two ER visits. Poor Arlo comes on the weekends and takes care of us both. Then he said “she needs to be in a nursing home”. He’s lucky I’m still with him. We have no one to help us. She is still incredibly sharp, cries when Arlo takes me to chemo cause she can’t do it, I have provided her with a shower chair, cane, and a walker…which she refuses to use because of her vanity. She has become very demanding and I understand why. She was very active before June…drove to the store, ran her errands, did her own bills, etc. then she woke up one morning and had the severe pain and couldn’t bear weight on her right leg. I want to help her, but due to my situation I can’t do some of the things she needs me to do. Being a former nurse makes it very hard. We nurses don’t handle caring for our own. It is the fear of what is happening to this beautiful, active woman that breaks my heart. Today has been really hard. I’m not feeling the best and I am trying to sleep so I can get some strength back. And the funny part of this is…she keeps her thermometer set at 88 and I keep mine at 72. So it is too hot for me to stay with her and it is to cold for her to stay with me. We can’t reach a happy medium. She still has a fantastic sense of humor. I just feel like the worst daughter in the world. I cry, I pray, and everyday I feel my heart breaking just a little more. I never thought I would say these words, but I don’t know what to do. After her appointment, I hope I will understand more. Thanks for reading my rants.

    • Char says:

      Sweet Bev,
      I am saddened to read of all the pain and suffering that you and your dear mom have been enduring. You both have been so strong, so brave, so upbeat ( yes I remember the M&M story) for so many years now.

      Thinking that your mom may feel that by not giving in and using the walker/wheelchair, she doesn’t have to admit to herself, let alone you, that things are that bad. She may feel also that she is letting you down, she was always there for you, as you have stated.

      On the flip side, you are stressing out by her refusal to use the products that will help you help her. Bottom line its a very difficult situation for two women who need help and have none.

      Is there anyway you can qualify for some in home assistance? Do your doctors know of this situation, the added stress and strain on your body is not what you need at this time.

      I so wish there was a way for me to help you out. We are here for you. I admire your courage, and pray you will find answers during mom’s next doctor’s visit.

      Please don’t even think your comment qualifies as a rant, you are much too sweet to rant, I on the other hand, wellll that’s another story.

      • Tony D says:

        Hi Bev,

        First, there is no rant here. You have a ton of things built up and they are eventually going to find a way out. Your issues did, and I hope there’s just a little relief gained from venting your spleen. The real trick is to see if there is anything you haven’t tried yet to see if you can prevent another buildup…

        It’s tough enough dealing with a loved one who is in need of caregiving, it’s taken to another level when the caregiver isn’t 100%. I truly can’t imagine the staggering burden that you face every day, and yet, through will, determination, love, you have managed it. That in and of itself is pretty amazing to me…

        Has every avenue of trying to solve your Mom’s sciatic pain been explored? I almost feel like a putz for asking because you are a former nurse, but if there is anything you haven’t tried, perhaps you could. That would be a huge win if something popped that you haven’t tried – different treatment, pain meds. I’ve had a bout of it myself, I know the agony…

        You are far from the worst daughter in the world – you want to make everything right and make your Mom feel comfortable. That alone puts you on a pedestal… You need to care care of yourself too – your tank needs to be full, and like the distance between gas stations in the west, you can’t let yourself run out. No one can maintain a record setting pace forever – the operative word here is pace. Keep evaluating every day, steal a few moments for yourself and do it without guilt. Don’t let your internal gas gauge read “E.” There are things which eventually prove more than any one person can handle and if it becomes too much for you to handle alone, I truly hope you will avail yourself of those resources. It doesn’t mean you’re some kind of flop, it shows that you truly have your Mom’s best interest at heart. At some point in time, the old life here on planet earth can get pretty tough to deal with. When you hit one of those rough spots, know that others have been there, and that many others who haven’t still come with a sympathetic ear. Those people are the ones who come to DLH…

        Peace……..Tony

    • Joan says:

      Bev, I love you. I understand a lot of your angst and pain right now. Contact your state department of social services adult and aging services. There is a Caregiver Respit Program that they will pay someone so many hours to come help with whatever you and your Mom need. It will cost you nothing. Wish I could help with the temp issue. That is huge. Too hot is worse than too cold. Lay some layers on her. Is there a local chiropractor that makes house calls? Please get someone to help you with her appts. Tell her the best way she can help you right now is to use the walker, etc. for a liitle while until she gets better. be firm. And continue to love Arleo my battery is going to go any minute so no corrections sorry

  2. Edward N says:

    I am a male at the age of 80 and I have COPD & a weakened heart. Last year I was under the knife for 8 hours for open heart surgery because I had a bleeding heart which was replaced with several veins from my right leg. I wasn’t supposed to survive but I did.

    After almost a month in rehab I reunited with my girlfriend and after she took care of me we departed our relationship. I have been a widower for the past 15 years and find it very difficult to take care of my debts which are outrageous. Having not paid my maintenance for almost a year and other accumulated bills is an enormous mountain to climb. Arrangements have been made to repay my condo maintenance and has set me back very much.

    I have had several COPD attacks and have been using my nebulizer about 3-4 times a day. Being alone is awful and many a friend related that if it wasn’t for their wives they wouldn’t be around. Last night I was up until I fell slightly asleep. I really don’t know how much of this I can take…financially and physically…used to say “If you have your health you have everything”…I need both…

    Ed

    • Tony D says:

      Hi Ed,

      Sorry to read about your situation – these should be the years when we kick back and enjoy whatever life lies in front of us…

      I guess the best path forward is to tackle anything that you can control. Finances might not be at the top of the heap, nor your medical condition. Be nice if there were some positive changes in either, but that might not be possible…

      It does sound like you would really love some companionship, and that is something you can take a swing at. There are meet-ups in most cities where like minded people can get together and share experiences, maybe more. Are you a member of any clubs? VFW, Elks, etc? If so, I know they have activities where you might meet someone to fill up the loneliness void. An internet search using your area and entering “senior activities” to see what turns up is a good start…

      I wish I had more suggestions to help on the other issues – perhaps someone else will chime in and help. I do hope that your path becomes easier – do try and work on what you can control, and hopefully some other things will fall into place. It sounds like you could use a break, I am hoping you get it, and soon…

      Peace…..Tony

    • Char says:

      Hello Ed,
      Sorry to read of your current situation. You sound like a very strong gentleman, and that is a good thing.
      Our friend, Tony D has some great ideas on how you can get out there and meet some great people.
      I am wondering, can you qualify for a few hours daily of at home care, with your meds, cooking, cleaning etc ?
      If you do it would be of great help to you, and also free you of the stress those chores may be causing you.
      We are here for you at DLH, 24/7. I hope today brings you less stress and more sunshine into your world.

  3. Susan says:

    Some of you know, I have been absent but keeping you all in my prayers. I now need some advise. My mother lives with us, is 85. Some beginnings of the memory issues, actually increasing. She is still independent to the point where she can walk to Walgreens on the corner, etc. She has pain, back and leg pain, but refuses to see a doctor. My husband, son and myself both work, me working two jobs. She worked full time until she was 80 years old, when she lost her job, she lost her car. And she was fine with that. I devoted weekends to her, taking her around wherever she needed to go, etc. About 3 weeks ago, something has triggered her mental status. She is extremely agitated, depressed, despondent. She is not eating, she is not sleeping. My sister and I have both tried to figure this out and see what is going on. She is very stubborn, does not talk much other than to say she is depressed because she needs to be “doing something.” Mind you, she has difficulty walking much distance, standing aggravates her back. She is not the person she was at 80. Her mental faculties are such that no one is going to hire her to do a job. I have tried the volunteer route, but she has turned one of those down. We have another opportunity Saturday at PetSmart helping with the adoptions, but I do not know how that is going to turn out. I have researched adult day care and it is extremely out of reach financially. And not sure she would even go. I believe Sundowners is coming on strong. I did give her an Advil PM the other nite but she said she did not sleep. I am frantic, I do not know what to do any more. I am getting frustrated because I want her to live happily ever after and I do not see that happening. Any suggestions at all would be appreciated.

    • Tony D says:

      Susan, it’s pretty apparent that your Mom is “old school” – no one is going to tell her what she can or can’t do. Working full time until she was 80 is something most don’t want to do, yet she did…. In her mind, she needs to be doing something because deep down she has the sense of contributing, something she has done all of her life. Now there is no job, no real sense of purpose, just the frustration that comes with increasing body pains and mental issues that only complicate the whole situation. As the Brits would say, here’s where the wicket gets sticky…

      Physical pain will put a crimp in even the stoutest of good intentions, so that has to be considered. Taking out of the equation tasks which will cause pain narrows things down – I’m wondering, does your Mom like to sew, knit, crochet? Any hobbies that she has always loved doing? I bring up the craft bit because perhaps it’s possible to talk to her about completing some sort of project at home, like a quilt…. Tell her it will be sold at a church bazaar, or the like…. Just trying to think outside the proverbial box here….

      Does she like to garden? Perhaps starting some seeds from scratch in pots or tending just a small little plot of ground? When my Mom was somewhat on the ropes, she took great pride in providing the flowers for the alter at church. It seems like the Humane Society is in need of volunteers for a couple of hours every once in a while – any possibilities there?

      Just a few first pass suggestions – if I can come up with something else, I’ll pass it along. Hopefully others will dig into their collective caregiving experiences and pull something out that might be a good fit for your Mom… Anything that you can come up with that will keep her occupied and contributing will be a win in her mind, and ultimately for you and your family too….

      Hang in there, it is so tough to see the role reversals where you are now the “parent”… If there is some success to be had, you sound like the type to be able to pull it off!

      Peace….. Tony

    • Char says:

      Susan,
      There are numerous meds to help with Sundowners, my mom was put on a few different ones.
      It will not go away, by itself, and no amount of caregiving will help with it.
      Not wanting to see a doctor, on her part of course making the situation so much more difficult.
      Is there anyway you can get her to a geriatric specialist? Or a psychologist?

      • Susan says:

        I have found several geriatric physicians but have to call them & make sure they are accepting medicare only. This has all happened rather quickly and with no explanation so am really at a loss. But will muddle thru it. Love you my friend and hope things are improving for you.

        • Char says:

          I am here Susan if you need me, 24/7.

          In the meantime, please go easy on yourself. Having faith and armed with the knowledge you need once a doctor is on board, I just know things will improve.

          I know how awfully hard it can be to witness our parent acting so extremely different and difficult.

  4. Jane says:

    Here we are progressing rather steadily along the path..
    Mu husband had a year of feeling well after major renal surgery but the meds that had just begun at that time was busy taking hold throughout his body without a hint until last summer…3 prognosos dates later he is still here and we are trying to make our time meaningful which is easier said than done. Confined to wheelchair and home 99% of the time it is so difficult for him but also for me..busy but so tedious with the up/down of each day…anyone out there has a ‘lost” heart some days?? Jane

    • Tony D says:

      Hi Jane,

      Speaking from personal experience, it’s pretty easy to lose heart some days. Caregiving is rewarding on so many levels, but it’s also a huge challenge – you’re on one of those roads in the west that just looks like it goes on and on, not a bend or the end in sight… It helps to look off to the sides from time to time, see the other things that are out there, appreciate them when and where you can, the beauty of the rest of life. Your soul needs fuel and recharging from time to time just as your body does – the continuous drain on you is what will eventually lead you to the point where you are losing heart. It’s not uncommon and over time, is fairly predictable – don’t let it lead to a deterioration of your own health and happiness, sometimes easier said than done as you noted. It is so important to tend to yourself too – can you plan some little escapes from time to time? They need not be lengthy vacations (although a substantial break is mighty welcome from time to time if you can manage it…) – perhaps just an afternoon out doing what you like to do and haven’t made the time for recently. Find a Barnes and Noble, sit down with one of those coffees that I can’t even begin to order with a straight face, and do some reading or just peruse a magazine. Some shopping for something other than groceries… a treat yourself to a pedicure day… Listen to your favorite music and let the rhythm recharge you or let the lyrics soothe a beaten down inner you… If there are other family members or friends that can spell you for a while, it will do wonders for your outlook. It will help you find that heart again…

      Yep, there are those lost heart days out there, laying in wait to trip you up. You can always wander over to this website and there are those who will help you. You’re not the only one going through it, and those who have been down that road before will help you along it.

      Peace…. Tony

    • Char says:

      Jane,
      I hear you LOUD and clear, and know exactly where you are coming from.
      I have misplaced my “heart” many days….trust me. Usually at these times, I try to tell myself, there are always those worse off.
      Some days that frame of mind works, on the days it fails, so do I.
      And it’s ok, I have recently allowed myself to let those dark thoughts, mixed in with fear, frustration, and loneliness have their way with me
      BUT, just for a short time.
      We are caregivers… through the good and bad times. We will get by each second of every day, in the knowledge that we are not alone.
      Dear Jane, I do hope you will have some good days ahead, and write to tell us about them.
      But if not, just know we understand, have been there, and will be here for you.

      • Jane says:

        Thanks Char;

        I find it amazing that we let things in at a pace that we don’t realize is even happening; just to make it manageable.
        Yes I have good parts of days and so does my husband. I feel like we are calmly suddenly marching along the path of end of life for him and don’t really seem to be addressing it out loud…just happening and staying centred as it unfolds..
        What about the people around us?? Some get it; some don’t and are soooooo disappointing to me in the process..Is it fair to delete the”friends” who don’t bother to acknowledge what our lives are doing these days??..I find that stuff stressful in my disappointment and feel like I don’t need it on top of everything else I am attempting to manage.

        Thoughts on that??

        • Char says:

          Unfortunately Jane, there are people that don’t understand what you are going through, or don’t have any idea what to say to you and/ or your husband.

          It is difficult for you to accept the total lack of compassion, and I get it, as I have experienced similar situations.

          My only thoughts are to do what makes you less stressed out. If deleting them, will help, then do it. No one on earth can feel your pain, hurt, anger and frustration. At times like this, in the perfect world, it would be great to have the sympathy and compassion of our friends and family.

          Lastly, in my opinion, they will all understand and get it, when their time comes, and they walk in your shoes. In the meantime, we will be here and hold tight to you, we know what it’s like, we care.

          Char

          • Jane says:

            good advice….funny /strange how people come out of the past to “swing by” and see the sick person. What is that about? It makes the sick person (my husband) feel bad ..he says he feels suddenly like he is on display knowing that he looks nothing like he did and also without the stamina to reminisce endlessly. I guess I need to be the gatekeeper but meantime being ill makes for an awfully boring life for both of us, Its a tough balance but i sure am sick of making even more meals for visitors!! Now we even have his ex-wife of 35 years wanting a “viewing” as he calls it..I just got up today and wondered what on earth people are thinking….any thoughts?

            • Tony D says:

              Hi Jane,

              It’s definitely not funny “ha ha” how those blasts from the past suddenly have some sort of an epiphany and want to touch base again. I get where your husband is coming from, my Dad was pretty much the same. He tolerated the visits, but was a lot happier when they were over.

              There isn’t anything about being ill that has a redeeming aspect to it, unless perhaps, one is really looking for a chance to catch up on some back-logged reading. You are the gatekeeper for sure, but not chef. Forget the meals, and if neither one of you is up for company, simply say your husband isn’t up to it today. Maybe boring, but problem solved…

              As to what others are thinking, perhaps they are trying to purge some guilt from their consciousness, perhaps they think they are doing the right thing in regards to however their moral compass is swung. I really can’t say for sure, but sorry that you have to put up with it…

              With all that you deal with every day, I’m hoping you can nip this one in the bud. There are battles you can choose to fight, some that you become a reluctant participant in. I have a feeling you will choose wisely – for those moments where you go “what was I thinking,” you can always come here and vent…

              • Jane says:

                Thanks for that Tony;
                My gatekeeping is now òn`…
                I see visiting is sometimes to make the visitor feel better and has not much to do with the patient..too bad for them I don`t really care about the other guy“ so much this month.`
                Life is intense if you let it be..I am trying; that`s all I can say..

                • Tony D says:

                  Jane, trying your best is all you can do…Control what you can, chuck the rest of it – it’s not your job to be everyone else’s good time. You have your hands full as it is – I’m hoping that those around you will get the message sooner rather than later. I’m pulling for you…

                • Char says:

                  Jane,
                  You don’t need the stress and all that comes with “entertaining” visitors. While it is completely understandable that friends and family, wish to show their care and respect, they should take into consideration the patient first.

                  I think you are doing an amazing job of caregiving. Your best is a true gift.

    • Lee says:

      Yes. I do off and on throughout almost every day.
      I find a good cry and honest communication with my maker a relief. A devotional I was given instructed me to always be thankful lest I be carried away in a torrent of rage or self pity. Maybe that is good advice for someone….but for me…the safest place to go with my rage and self pity is my maker…I find it of no purpose to white knuckle life with a fake smile and fake thankfulness for things that tear my heart. I had believed my Quadriplegic husband would be healed, yet at the same time was never verbal about this and really put out with people who push this,knowing my husband’s hurts and disappointments in this area. It is a long road in the same direction. I want to enjoy his laugh lines and quirky humor as long as we get to share this road. I lose heart when I let things be too much I think. Or when I look at things simply the way they are…thank you for the question. I think acknowledging rage,sorrow,self pity,disappointment…is like checking in a worn black bag with the doorkeeper of my heart. He knows what I carry,it is not a new,cheerful designer bag with nothing in it, everything that has made me able to comfort anyone else,given me character and endurance,depth and compassion is in that heavy bag. Here I found people with a similar black bag. I love this site. I love that life is real here. No pretending to avoid the awkwardness of sorrow and despair. Somehow it is very comforting. I am comforted to read of your comforting. Thank you

  5. Robbie Clark says:

    My mother has heart failure diabetes and dementia also cardiac serosis i am a 45 year old male been looking after my mother for over three years now I am finacially and mentally drained her dementia is so bad she cant even take her meds because she is compleatly confused now it has become more difficult because her diabetic doctor has taken her off of her diabetic pills because the meds are causeing her problems with her kidneys so they put her on insulin which i have no problem with but she is clueless on blood sugar monitering and adjusting dosages based on that so now i have to be with her 24/7 she is also on Oxygen 24/7 she has hospice but they don`t do nothing but order meds and drain her plurex catheter every otherday which i have been trained to do myself. i have no family to help all are dead uncles aunts and remaining that are alive don`t care have no communication or visit her its causing me health issues with lack of sleep and stress people are pretty selfish i am pretty much destitute lost every thing except my truck so frustrating but all i can do is be with her until she passes and take care of her needs cooking cleaning shopping laundry making sure she takes her meds I live in VA there is no help for care givers. any help with advice would be greatly appreciated

    • Jean F says:

      Robbie, three years is a long time with no help, of course you’re drained! I’m attaching a link here for you to explore – click on “Find Services” and see if there is anyone near you who can talk to you about services at home, what your mother’s insurance might cover, what free services are available to you, and maybe a support group. Your mother has so many issues, she obviously wouldn’t be alive if it weren’t for you – you are a good son, and she is so lucky to have you. But you need some time to yourself, even if it’s only one or two days a week, to relax, get away, sleep. Explore this website and talk to some people, even if they’re too far away, see if they know of any services you and your mom will qualify for in your area. Let us know how you’re doing, we want you to get the help you need so you can get your health back. Here’s that website:
      http://www.virginianavigator.org/vf/

      • Tony D says:

        Robbie, the care you have provided for your mother over the past three years is nothing short of amazing. I try to put myself in your shoes and wonder if I could pull off what you did – I’m hoping I could, but you have set the bar mighty high.

        The only problem with that is it’s a bar you have to clear every day now, and it is taking a toll on you. Jimmy Buffett said in Trying to Reason with Hurricane Season, “I can’t run at this pace very long.” Neither can you, no doubt about it. You really need a break and the opportunity to start rebuilding the life, financially and medically, you have lost over the past few years.

        I hope you can pull from the resources on the website that Jean sent you – there is some great information there. Explore that site from top to bottom and make use of everything that can help you regain your life. You are so deserving of it given all that you have personally sacrificed caring for your mother. I don’t know if it’s a player in your case or not, but your church may have volunteers that can come to your house and maybe spare you a few hours every once in a while. Leave no stone unturned in your quest to take care of your needs too. I’m hoping you can find a way, any way, to start putting some enjoyable activities back into your life.

        You have taken on, and succeeded in providing quality care for your mother for all these years. Please take the time now to take care of yourself in every way possible. We’re pulling for you and hope you let us know how it’s going…

        Peace….Tony

    • Char says:

      Robbie,
      Hello and welcome…
      You are overwhelmed, and rightly so. The fact that you are doing it all, and then some, has left you financially and mentally drained, as you stated.

      You must make time for yourself, even if it is just for 20 minutes per day… time alone, away from your reality is what you need now.

      Of course help caring for Mom is critical. Jean has provided you with the information you need to proceed from here. Believe me I know first hand how difficult it can be. Diabetes, as far as I am concerned, is the “D” word, as cancer is the “C” word. To say it is hard to manage is an understatement.

      Cardiac stenosis is no picnic either, what stage is your mom in? In addition, you have the dementia to deal with, my God man, you have a plate that is overloaded.

      I do hope you will find the resources here and the strength to continue on your caregiving journey. My thoughts are with you and your mom.

      ~Char

  6. Melinda Larkin says:

    My mom had her hip replacement yesterday and now we begin anothet part of our journey together. She really wanted this done because her quality of life was so diminished with her lack of mobility. Today she’s pretty sleepy and you start to realize that the road to recovery is long and unpredictable. I already know all this but it’s still hard not to have her be the way you know she wants to be as quickly as she wants to be. You also realize that life is ever changing and you don’t always have control.

    • Tony D says:

      Melinda, if there is a silver lining in there it’s that your Mom wanted to get it done. That shows a lot of spunk right there, and attitudes count for more that we can put a value on.

      No doubt it will take some time to get back up to speed, but her fire will serve her (and you) well! It sounds like she is rolling with the punches, hopefully she’s up and about soon, but takes it slow to start…

  7. Gina says:

    My best friend has stage 4 lung cancer. He is 63 with a 12 yr old daughter. She attends a private school. I have to drive over 20 miles one way to her grandparents home. They take & pick her up from school. Then I drive back to their house to pick her up in the afternoons. I’m driving over 80 miles a day.

    Her mother died of cancer in 2006. Financial support has been 100% from his in-laws. My best friend also has a son who lives an hr from here with a 17 yr old son.

    I work for myself. I have been taking care of him & his daughter for 4 months. I quit asking his son for help because at the last minute, he backs out with some lame excuse. I suffer from chronic pain from old injuries.

    His daughter went out of town to her other grandparents so I thought things would chill out here until xmas. The next day his son drops off his son (my best friends grandson) and I never get a break. I want to go back to work so I can rest.

    My question here is: When is enough enough? If I leave, I will be letting my friend and his daughter down. If I stay, I will be letting myself down. (Or continue on a downward path where I won’t be able to return to my business.)

    • Jean F says:

      Gina, if you’re asking the question, then it’s enough. But it doesn’t mean you have to abandon your friend. For now, can you can start scaling back? It’s so great that his in-laws are so supportive, it’s too bad his own family isn’t. You definitely have to start saying “NO” to his son, what did he expect you to do, babysit a 17 year old??!

      It can be difficult when you work for yourself, people don’t get it. And you can’t say, “I have to get back to work or I’ll lose my job.” But you can certainly let everyone know that you’ve let your business go for too long, and that you’re going to have to get back to work after the first of the year, while you still have a business to get back to. You can’t afford the gas for 80 miles a day if you have no money.

      Can your friend’s in-laws afford to hire some in-home care a couple days a week? Can you arrange for his son to come one day a week? I know he makes excuses, but you can’t cover for him. Set the day/time he will come, and if he calls you, don’t answer. Make him step up. If he has any conscience at all he’ll be glad he helped his father, one day when he looks back.

      Even if they don’t mean to, people will take advantage if you’re always there, always forgiving, always filling in. They just assume you’ll be there. Maybe it’s time to be there a little less.

      It doesn’t have to be a big deal, start small. Ask the son to help with something easy then praise him to the skies, make him feel like a big hero. Invite him and his son over for dinner and, in front of everyone, tell your friend what a great thing his son did to help. Talk about some of the difficulties you’re facing and ask for his advice – you can’t do this or that for a while, does he have any suggestions? If he offers to do something, be super appreciative. If he brings his son over again, put the kid to work.

      I feel sorry for his daughter, she lost her mom, now she’s about to lose her father as well. It’s sad, and you’ve been such a good friend to help, now everyone depends on you. You can’t leave, they need you. But you can’t do it full time anymore, you’ll lose your business and/or your health, then you won’t be able to help at all. It’s time to explore some options, either with your friend, his son, his in-laws, or everyone together.

  8. Melissa Lowvet says:

    I had my mom, now 85, move in with me when glaucoma had diminished her vision to the point where she couldn’t drive anymore. We’re all that’s left of my family. My dad died of sudden cardiac death in 1995, and my sister passed from cancer of the appendix in 1999, a month before her 44th birthday.

    I was working from home yesterday, and the landscaper we share with our four cul-de-sac neighbors came to do the last lawnmowing/leaf-blowing of the season. At my computer in the kitchen, I heard my mom go outside and start screaming “Stop that noise! Stop the noise!”

    Alarmed, I went outside, where she was still screaming for them to stop. I put my arm around her shoulder and gently said “Mom, it’s the lawnmower. It’s ok,” and I turned her and steered back into the house. She was agitated and confused – but eventually she calmed down and seemed to have collected herself.

    I’m so scared that this a foreshadowing of what’s to come, and that I won’t know how to handle it, without it taking an horrific toll on me. How do caregivers cope, and maintain a grip on their own lives?

    • Jean F says:

      Melissa, first of all, it would be a good idea to take your mother in to her doctor to look at the cause of her new behavior. At her age it’s probably an onset of dementia, which would be good to know, since dementia can be caused by infection; drug interactions; metabolic disorders of the thyroid, liver, pancreas or kidneys; nutritional deficiencies, especially the lack of vitamin B-12; head injury; brain tumors; depression; or other progressive degenerative diseases of the brain.

      The most common forms of dementia in the elderly are Alzheimer’s disease and vascular dementia, a hardening of the arteries in the brain that causes blockage in blood flow, and while there is currently no cure, there are drugs that can lessen symptoms for a time. But it’s important to diagnose it early.

      With a diagnosis you will know what you’re up against and have some idea of what to expect. Unlike a diagnosis of advanced cancer or a sudden catastrophic disease, dementia is a slowly progessing condition, which means you’ll be able to learn to deal with it at a reasonable pace, and adapt your life to meet her/your needs.

      It may seem frightening right now, but you already have her there with you, and have some experience caring for her, which is really good; you won’t have to jump in the deep end with both feet – you can wade in slowly and figure it out as you go. Which is all you can do: take it one day; one symptom; one event; one lesson at a time.

      You were a good daughter to take your mom in, and beyond being a kind and caring thing to do, that decision may have saved her a lot of emotional and physical trauma that could have hastened or made her condition worse. Big pat on the back from us for stepping up and becoming her primary caregiver and advocate. I’m sure you’ve had days when you regretted it, and there are many to come, but you are doing your best, and that’s all anyone can expect of you.

      Take it slowly, don’t beat yourself up if you get cranky or frustrated, it’s completely natural. You’re going to make some mistakes, we all have, but you’ll learn from them. Let us know how it’s going, we’re here to help and encourage you if we can.

    • Char says:

      Hi Melissa,
      I recently experienced a similar situation with my Mother. First, as Jean suggested take your Mom to the doctor, it might be something as simple as a UTI.

      Also, I think you did a great job in calming her down, without losing your cool, you said and did all the right things. It’s difficult to become the parent to our parents, once you discover what is going on, it might become easier for you. Waiting, worrying and guessing is the worse thing, I was guilty of it at times!

      Please let us know how things are going when you get a chance. I wish you a stress free day.

  9. Heather says:

    My sister was just diagnosed with stage 4 non small squamous cell lung cancer. It is inoperable. They began treatment a few days ago. Without treatment, her life expectancy is 8 weeks. Not what we wanted to hear. I am her patient advocate and will deal with her business affairs if needed. Not sure where to begin. So much is wait and see. Will the mass respond and shrink. If so, what next. Will she be able to live at her own place? Will she need to stay with me? My spouse has already given me a lot of grief over the whole thing. Very threatened. His mom called to admonish me about not spending time at the hospital and staying in college. “She’s in the hospital, let them care for her.” I am still in college (local classes) until it is deemed necessary that I leave and no one will keep me from being there to hold her hand and be there for my sister. There’s been a lot of blaming her for having this disease. I have vocalized my feelings, but honestly, it falls on deaf ears. How can people be so selfish as to make someone’s cancer about themselves? How can they be so dismissive? Silence would be better. Not sure how to navigate the waters ahead. Hoping and praying for strength, wisdom, and healthy support.

    • Jean F says:

      Heather, the path you’re on is so clear, and so just. Follow your heart. There’s no telling how much longer you’ll have your sister for. If she survives for years she will always remember what you did for her. If she dies in three months, your heart will be at peace knowing you were there for her when she needed you most. The motto, “What would Jesus do?” comes to mind, as does my personal favorite, the Golden Rule.

      Take your books to the hospital with you, keep up as best you can. Some of your teachers will understand, others will not. The worst that could happen is that you’d have to take a class over down the road. No, I take that back – the worst that could happen is that you’d put school first and your sister would spend her last days alone in the hospital and you’d have to live with the guilt, and anger at your husband and mother-in-law. That would be truly sad, and irreversible.

      I can’t emphasize enough how important it is to advocate for her. Hospitals are crazy-busy places, lots of patients in and out, and even the best doctors and nurses can make mistakes or overlook symptoms. You are there to be her squeaky wheel. Squeak gently, be persistent, and then be appreciative and grateful for the help you get. Plus, even the best and friendliest staff can’t compare to family. A friendly nurse can make you feel well cared for, but a caring family member will make you feel loved.

      The why doesn’t matter now, and blame is pointless, you’re right about that. People who have never smoked anything in their lives get lung cancer – it’s a toss of the dice. I’m sure you admonished your sister many times, and right now she would give anything to go back in time and take your advice. Regret is a terrible thing to have lurking around while you’re trying to stay positive and look ahead, and it benefits no one.

      Try not to overthink what’s down the road, take care of what you can today and do your research so you have an idea of possible outcomes and options. But mostly, make this time with your sister count – create special moments that will become comforting memories in the future.

      If your mother-in-law or husband get in your face about spending time with your sister, tell them that you appreciate their advice and if, (God forbid), they end up in the hospital you will follow it.

    • Pam antosiak says:

      Hi Heather. I am truly sorry about your sister’s lung cancer. I am so GLAD that you want to stay with your sister as much as possible. It is an invaluable help to a person. As a nurse, I can tell you, family involvement like yours is a gift to the patient and those who provide their care. You will never regret the moments you spend with her now. It might be an inconvenience to miss school, but classes can be repeated in the future if necessary. Your husband and his mom likely have your best interests at heart, but they can’t guide this decision, only you can. I pray for their understanding, for you to have great moments with your sister and your success with your education. One day at a time for now…God bless you and your family. Pam

  10. Angela D. says:

    I’ve read some of these posts and a lot of it sounds so familiar. I’ve taken care of my mom for 14 years and 5 months. Last Tuesday we had to finally admit defeat and put her in a nursing home. She has dementia. This story is so long and I’m not in a frame of mind to put it all down just yet. Suffice it to say, I am so lost I have absolutely no idea what to do. I can’t say if I have PTSD, but I certainly have some of the symptoms. I haven’t drowned myself in a bottle, but only because I don’t drink. If I did, I’m sure I would be drunk 90% of the time. The only paycheck I’ve had for the past 8 or 9 yrs is from being my mom’s provider. I don’t have that now, but I don’t think I could work right now anyway.

    • Char says:

      Hi Angela,
      I am sorry you feel defeated by having to admit your mom into a nursing facility.
      For 14.5 years you provided a safe haven for her at home, that doesn’t sound like defeat to me, and I congratulate you.
      I have just recently, about 9 months ago, starting caring for my 94 yr old mom with numerous health concerns. I can understand you feel lost, as the day to day hands on caring is being done for you. The day to day caring of my mom is what is wearing me down. Our problems seem to be the opposite of each others and yet I can feel your pain.
      Do you visit your mom often? With the money problems it would be difficult to do much, but how about just taking some time off for yourself. Fourteen plus years is a long time to give your all to the caring of a loved one. Give yourself time to relax and get comfortable with the new situation, visit mom when you can, call the home and keep tabs if you aren’t able to physically be there. Take baby steps, it takes time..you need to find yourself again.
      I wish you all the best.
      Char

    • Jean F says:

      Angela, this is going to be a huge adjustment for you after fourteen and a half years of being your mother’s caregiver. You are going to have so many different emotions popping up, and the options for your future are going to seem both daunting and very far away. Give yourself a little time, and be gentle with yourself. You did a wonderful thing for your mother, you did your best for her, and now you have made an incredibly difficult decision that, while very painful, will ultimately be the best thing for both of you.

      You know those games at carnivals, the one with the gophers that pop up out of the holes, and you have to hit them with the mallet? Think of your emotions that way, but don’t hit them, just acknowledge them and gently push their little heads back down. DOUBT! GRIEF! FEAR! SORROW! As they pop up, imagine petting them gently on the head, and as you push them slowly back into their hole, remind yourself that these emotions are perfectly normal responses to what you’ve been through.

      There is no set timetable, everyone is different, but once you get through this initial surreal phase you will begin to heal. It will take time, don’t be hard on yourself if you think you should be further along than you are, and if anyone tells you that you should just “get over it”, forgive them their ignorance. One day you will feel a small stirring of an old forgotten goal or dream, then one day you’ll find yourself laughing unselfconsciously. One day you will find yourself crying for your mother and you’ll realize that your tears are a gentle releasing of sorrow, instead of the gut wrenching sobs filled with self-doubt, guilt, anger, grief, and that nagging voice telling you that you should have held out longer; that you were weak and a bad daughter to “admit defeat” and abandon her to the care of strangers. We have all heard these voices. Some of us held out longer than we should have – guilt made us carry on until someone fell, got dropped, developed infections, etc., before admitting that our loved one needed more than we were physically able to give.

      You fought the good fight for over fourteen years! We are amazed at your fortitude and selflessness. Now you enter a new phase in your caregiver journey – you will visit and make sure she is getting the care she needs. Eventually she will get you confused with the other nice people who help her. If they aren’t up to snuff you’ll find a new home for her – you see, you aren’t off the hook even now, so stop feeling like you dropped the ball. That ball is still in play and you are still in the game, the game is just in another court now.

      It’s time to get to know Angela again; your family; the friends who are still your friends. You will have good days and bad days. On the bad days, when you feel like no one in the history of the world has ever felt so wretched, we’ll be here to assure you that others have gone before you and come out the other side wiser, stronger, and more compassionate than when we went in.

    • Pam antosiak says:

      Angela, you have done a difficult job with grace. Admitting we must pass care on to someone more capable is hard and never ever a seamless transition. Can I ask that for the moment you take some time to see how you’re doing? You say you aren’t sure if you have PTSD, and I wasn’t sure either, in fact I was pretty sure it was impossible, but I did. You have cared for your mom and made sure her care is safe and appropriate now. Please take some of the time you have to assess your health before you think about going back to work. God bless you and your family. My prayers go with you.

    • Susan says:

      Angela, your situation sounds very similar to mine. My mother moved in with us when she was healthy and worked full time. She has her own apartment attached to our house. She worked full time until she was 80 years old. She is now 85 and since she has not been working, unfortunately the mental issues have started coming in. Not remembering, drifting off into space, etc. She has lived with us now for nearly 20 years. But in the past 5 years, I have become the mother and she the child and at times, that is very hard to take. Some days I just want to yell and say I want my mom back. Those are the times when I turn to my friends the most and perhaps just an hour lunch out suffices. And praying, praying helps immensely. I know what the outcome will be and I am fortunate to be able to keep her home. Please visit this site often and let us know how you are doing. Remember, you are doing your very best. Stress for the caregiver is just as strong as for the patient. You are not alone. This site has been a blessing to us all, Jean F and Char are two of the most amazing ladies I have known. Wishing you better, brighter days ahead.
      Susan

      • Tony D says:

        Hi Susan,

        It’s awfully tough to watch those who raised us, nurtured us, trained us, drift off into a fog. Hunting for them there is infuriating, but the times you do connect, is well worth the effort. Sadly, a great many of us will face the same path – sounds like you’re handling it with grace, and with the help of friends, the journey is a lot easier….

        May your days remaining with your Mom be fruitful, pleasant and that you can savor every moment with her. You are truly standing tall and what a blessing your Mom has in you…

        Peace…… Tony

        • Susan says:

          Thanks for your kind words Tony. For the past week we have been dealing with sundowners. It is very difficult and trying to say the least. Just keep praying.
          Blessings.

          • Char says:

            Sweet Susan.

            Sorry that you both are dealing now with Sundowners. My mom was diagnosed with it last summer, after 15 or more stays in and out of the hospital and rehab facilities. There are a few protocols that can be of help in dealing with it. It is frightening to both of you I am sure. It seemed to come out of the air, when it hit my mom one night. At the time, I had no idea what we were dealing with, but the doctors and medical professionals helped me understand more about it. It does take time to find the right protocol and for it to start working.

            If you just need to vent you know this is the place, if I can be of further assistance, please feel free to call upon me.

            Hang in there sister, you are one strong woman.

          • Tony D says:

            Hi Susan,

            So sorry to hear your Mom is now experiencing Sundowners. It’s pretty hard to treat something when the medical profession can’t say for sure what the definitive cause of it is.

            I’m sure you’ve searched the Internet for more information on Sundowners, I found one article that may offer some relief for you both…

            How to Handle Sundowners Syndrome

            This is a situation that likely requires some trial and error to see what combinations work the most effectively – I’ll add my prayers as well that you and your medical professionals will come up with the mix that will work…

            Peace…..Tony

  11. Jennifer S Rossi Rossi says:

    I lost my husband of 25 yrs. on 9/17/2012. He was 100% disabled from the Army, but I just couldn’t bring myself to make him seek help from VA Medical, so I bought him private ins. at rate of $1,500/month. He had no life insurance since he was uninsurable due to the jeep rolling on him in the Army. Needless to say, the bills were staggering. After he died I lost my house to foreclosure & car to repossession. It’s a disgrace how veterans are treated, or mistreated, by the VA. It’s too late for my husband; however perhaps the VA will shape up after the expose into their malfeasance.

    • Jean F says:

      Jennifer, you had so much to deal with! It’s bad enough when you’re caring for a loved one who’s disabled, but on top of that to have to deal with governmental bureaucracy, that’s an incredible amount of stress. And anger, which you really don’t need when you are already exhausted. You did it, though, you cared for him and found him insurance and saw him through to the end. You did your best, and now you are picking up the pieces. It’s just terrible that you lost your home and your car, and I know your pain is still so fresh, but it sounds like you are the kind of person who will come out of this even stronger. Just know that you can come here any time you’re having a bad (worse) day, we’ll listen and help if we can.

    • Char says:

      Dear Jennifer, I am sorry for your loss, and for the countless other losses you have had since your husband passed. My husband is also a veteran and we have had some degree of help from the VA. As Jean said, you did your best for him, which I know was difficult. Financial stress along with the stress of daily caregiving can really takes its toll. I hope now you are able to care for yourself and get back on your feet. I pray the system will change for our vets, so they can finally receive the proper care.

  12. Terese says:

    Thank you, Jean. I do crumble, in private. I know the hell that’s coming, so I cherish every moment with Tim. It’s my goal to see that he does not suffer. He’s been through enough. It’s a delicate dance we caregivers perform day after day. Hiding the heartache, tending to needs, and assuring comfort. Right now, we have good days. So we celebrate and cherish……as long as possible.

  13. Terese says:

    Good morning. Just stopping by to say hello. Things are calm here on the homefront. Tim had his radiation consultation and decided against it. No more surgery either. This pleases me as I am all for palliative care when there is no cure. The cancer is in both lungs now, but Tim feels fine, eating healthy, compliant with insulin, and is strong as a bull. We have some serious coasting time now, and can all take a deep breath. Whew. Happy summer, pretty ladies. Hold on tight to your loved ones.

    • Jean F says:

      Terese, my heart aches for you, but you are handling everything so beautifully. I know there are times when you crumble, but I also know that you are Tim’s pillar of strength. I admire you so much.

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