WELCOME, CAREGIVERS
“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
THE CYCLE OF LIFE
There was a time when families lived together; if not in the same house, then in the same town or village. 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.Familial caregiving was a given: grandma and grandpa helped to care for the children and run the household, and lived in the family home until they breathed their last breath – the whole family was involved in their care and children grew up witnessing the entire cycle of life.
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. It can be quite a shock to suddenly find that someone you always thought of as invincible is now depending on you for their very survival.
THE INEVITABILITY OF CAREGIVING
When we’re young we think we’ll never get sick or old. But it happens – sometimes suddenly, and sometimes so slowly we don’t even notice, until we realize that more and more of our conversations are about aches, pains, injuries, eyesight, indigestion, and illness. All around us the people in our lives are aging noticeably, getting sick, and even dying. Our parents are getting frail or have passed on, and we all know at least one person in our life who’s been diagnosed with some kind of cancer or other serious disease. Male or female; spouse; partner; sibling; son or daughter, if you aren’t a caregiver now, chances are you’ll be one before long. And that’s why we’re here at Don’t Lose Heart: to support you and encourage you with our own experiences, and to share lessons we learned along the way.
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. Unfortunately, “Caregiving 101″ isn’t taught in schools, even though it’s a natural and long-practiced part of life. If your loved one’s condition becomes too much for you to handle on your own, we’ll be here to support you while you’re finding a care facility and during the difficult adjustments that may follow.
This blog is for caregivers:
- Past caregivers who are trying to recover from their ordeal and/or loss
- Present caregivers who are currently caring for an ailing loved one
- Future caregivers, who are seeing the signs and realizing that soon they will have to do some serious decision-making.
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 an incredibly joyful experience.
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 many conditions common among primary caregivers. These conditions can be life threatening if left unchecked. We want to make sure you’re aware of the hazards, the precautions, and the options open to you. We hope you’ll take the time to read some of the information and caregiver stories here.
WE’RE HERE FOR YOU
Sometimes just knowing that others have experienced the same nightmares, doubts, fears, and “selfish” thoughts and resentments can lighten the load a bit. Use the comment boxes at the bottom of each page to let us know what you’re going through. 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. We hope you’ll feel at home and learn from our mistakes, 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.
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.
Barbara,
Cargiving is not an easy job, but certainly has its rewards. Without professionals like your husband, working the front lines of the ICU and yourself, we all would be lost. Thank you both for your life long dedication and for giving back. I am sorry to hear of your illness, and hope today is brighter for you. I love your last line, “don’t ever be in despair”, need to remember that, when times get tough.
~Char
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Thank You for such a loving site. I’m married to a Cardiac Critial Care Nurse at the ICU of KAISER SUNNYSIDE HOSPITAL here in Oregon. He is dedicated wonderful nurse but he is also a loving caregiver to me. Having heavy metal poisoning with a body full of arsenic, cadmium and trichlorethylene has been a daily battle for a quality of life. All our love and appreciation will always be for all caregivers. Till my last breath I will always have warmth in my heart for them. We can each give back in some way. Tonight is my Dan Fogelberg love songs night. For more than 30yrs. now his music has always renewed my enjoyment in being in love. There is nothing like the feeling of being in LOVE AT ANY AGE.
DON’T EVER BE IN DESPAIR
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I just want to thank Char and others from don’t lose heart for reaching out to me and Scott at our blog (http://goingtogoa.wp.com). Part of the journey is surrender and I have only just managed to let go of caregiver anxiety, partly due to the sharing community I have found on this site here. With gratitude, Katy
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I have been the main caregiver for my mother who is now 92 yrs. SHe is very hard of hearing and took care of her own Mother for the last 24 years of her Mothers life. I helped during those 23 years to care for her also. I am 1 of 7 other siblings but most of the care falls to me now. I do have some help with her meds of which she takes alot. ALso some help in getting her to doctors office visits. But the day to day week to week month to month 24 hrs a day without much of a life of my own is wearing thin. SOmetimes the world seems to be so distant for me to enjoy anything outside of here. All the shopping and errands fall to me. Most of her day to day company is me. Its hard to go leave her for fear of her forgetfulness in turning off stove and heaters or dryers. I fear that I will be burned out at some point. I do live here with her and have for last several years. I always said I didnt want to live my life as my Mother did taking care of her Mother but here I am doing exactly the same thing. I have much resentment to some of my other family members as they are living their own lives as they see fit. I dont think any of them realize the responsibility I feel or if they even care. All this leaves me feeling so guilty and depressed. I am sure there’s someone out there in the same shoes.
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Pam, your fear of becoming burned out is a very real possibility unless you take action now. Sit down and discuss your need for some time away from home with her and then find a home care organization in your area (Home Instead is good). Talk to them about having someone come one day a week so you can get out and relax. I know this will be hard, but if you take baby steps with one day a week, eventually you and your mother will become comfortable with it and you can expand. If your mother’s insurance doesn’t cover it, write to your siblings and ask everyone to pitch in (split 7 ways it won’t be much) each month to help. Don’t make it a question, tell them, “This is what it will cost, so Mom and I need each of you to chip in $.” Let them know that your health is declining and that eventually you’d like to work your way up to 3 days a week off. Give them the option of either chipping in or actually sitting with your mother one day a week. Remind them that if you end up in the hospital, they will have to fill the void. Be gentle but firm, and be clear that you want and deserve a life too.
Don’t be surprised if some of them resist or refuse – all those past sibling jealousies and rivalries are revived and magnified when a parent’s care and love is at stake (not to mention wills!). Of course this will make you angry, but try your best to take the high road, show them you’re above arguing (and that you don’t have the energy to expend) and just try to get half of them on board. Hopefully the guilt of being the freeloader in the bunch, and the fact that you were so understanding and gracious about it, will eventually sway them to contribute.
Help with trips to the doctor and meds is good, but it’s not enough. You need to know that one day a week you’ll be able to get away from the responsibility, stress, and sadness. You’re right, they have no idea what it takes to care for your mother, and they won’t unless you tell them, giving them examples of what a typical day of caring for your mother entails, or unless they do it themselves. The constant supervision, the sorrow of watching her decline, the enormous responsibility of being the one to make life or death decisions each time a crisis arises, or the multitude of little piddly decisions that must be made for her all day long, the tension of always listening for falls or spills, is incredibly wearing. I don’t know how together she is, but if she has dementia it might be best to say you have someone coming over to give you a hand with some things and let her get comfortable with the person, and once you have the right “fit” for your mother, request that person be your permanent caregiver. Then you can tell her “I’m going to run some errands, Mom, but *** is coming over while I’m gone.”
Pam, one day a week, that’s all you need to accomplish right now. Focus only on that. Once you realize how beneficial the time away is for you, the rest will follow in due course and you’ll find you have more energy and are less resentful on the days you’re at home; your health will improve; you’ll be nicer to be around.
This isn’t your only option. You could carry on as you are and live out the rest of your days a sick, resentful, friendless old maid. :-0 We don’t want that for you! We want you to find that balance between freedom and martyrdom. Continuing to care for your mother full time will kill your spirit (maybe even end your life). Walking away like your siblings isn’t an option, you’d die of guilt. So you must be smart now and manage things in such a way that when your mother breathes her last breath you will have a life to carry on with, the health to live it, and the knowledge that you were there for her as she was for her mother. That’s a pretty wonderful legacy to inherit, and you, of all your siblings, are fulfilling it.
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Thanks so much for your response and email. Today my mind is not in a very good place my younger sister was here she does my Moms meds for the week and visits probably most regular of my other syblings but she isnt open to listen to anything as I was reminded today. She has too much on her plate. My oldest sister was also here visiting of whom my Mother doesnt seem to like much. My oldest sister takes her for most doctor appts. My Mother doesnt have demenstia but she is forgetting day to day things. ALso we call it losing some of her senses. You know like losing her Mothering skills. She isnt the Mother in actuality at present. Mother was pretty good during most of visit but as visit lengthened she became obstinate and finally quite rude. As in calling my sister an old woman which hurts peoples feelings. My oldest sister rubs it off but I know it hurts. I asked my Mother why she did this? Because I am a mean person. Breaks my heart to hear things like this. My Mother and I have a somewhat messed up relationship as it is but she can be so hurtful with her words of lack of words. SOmetimes I wonder how I am to get through this. WIth syblings that dont want to hear anything about whats going on because of their own lives. I am so messed up myself I do see a therapist and have for a few years. THis does help but it seems to end there. I do thank you for sending me the email which I will reread probably many times Have a great Sunday! Pam
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Hi Pam,
Please let us know how you are progressing.
I have read and reread your story, so much like my own, I care for my 93 yr old mom and husband with various health issues. Jean hit it all on the head, you must get time away on a weekly basis. Your siblings have to step up to the plate too. My time away usually comes each day, I work full time. I have one sibling, a brother, who lives 100′s of miles away in South Carolina. So I do what I can, take time for myself as much as possible. It is very difficult and yes at times I feel guilty doing it, but in order for me to continue, it is a must.
I am hoping that you receive help from your siblings, and if possible, sign on with a homecare agency that will assist in the daily care of your mom.
I too have resentment, depression and anxiety that goes along for the caregiving ride. I listen to music, have hobbies, work and play on the computer during “mytime”. At times, it helps tremendously and at other times, it just makes me more resentful, depressed and anxious, just depends on the situation that day. Getting out, in the real world with people helps, it frees me for an hour and allows me to go back home feeling like, “this I can do “, it’s all one day at a time. My thoughts will be with you Pam, as you maneuver your way toward a healthier lifestyle. BTW size 8 medium width shoes.
~Char
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Hi Char Thanks for the email. I really appreciate your words. You sound alot like me in the hobbies and computer time. I think the computer keeps me a little sane. I try to get out once a week and when I leave to where I am going its freedom and I listen to music and think and enjoy silence sometimes, but then I have to come home to where my life is. I am sad and wish I could go the other way too like everyone else. When my syblings come to visit which isnt often for most of them they visit for an hour then on their merry way. Back to the lives and families and grandbabies and children of which I have none. I am back to Mom and the isolation and worries and duties. I do thank you for taking time to read my mixed up story I am afraid my head is a little mixed up today but wanted to say thanks. Have a nice day! Pam
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Hi Pam,
Have you had a chance to check out some of the pages on DLH. The “Stress and Depression” page is very informative. It helped me tremendously, just in knowing the symptoms I experienced, at times, come along with depression, stress, lack of sleep.
Thinking of you and mom today.
~Char
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Hello Pam. We are very similar in some ways beginning with my name being Pam. My mom is 91 and I soend a great deal of time making sure she is comfortable, warm, well fed and properly medicated. I am, however, an only child and believe me i KNOW what you speak of regarding burnout. Char and Jean encouraged me to do small things for myself to start with. Something as simple as a mani-pedi or an afternoon feeding ducks at a park were a couple of my first baby steps. Pam PLEASE do something for YOU. Taking care of you is in no way selfish, for where would your mom be without you? I wound up (in the post babystep phase) taking a LOVELY vacation with my husband and let me recommend it!! Arranging a week of care is easier than you think and cell phones keep you in touch. Jean is right about Home Instead and there are various other similar organizations. I really encourage you to check it out! Pam, I know i get to feeling just exhausted and I am a registered nurse so I have a pretty good idea of what care is to folks without a medical background, There are so many questions, I know. I am putting you on my prayer list for good things to come to you. Help me along and take some time for YOU! Good luck. other Pam has you in her thoughts here.
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Pam, feeling depressed and guilty are signs of burnout. Please heed what Jean F wrote. Even if you can enlist one sibling to step up and give you time to be alone and to care for your own needs it will help you feel you have a partner on this journey, and someone who understands and can share the experience. I am not a primary caregiver as you are, I’m the one sibling who steps in when needed to give relief to my brother (who I’ll call D, to respect his privacy).
He and I shared care giving duties in the last weeks/months of our father’s life. With the help of hospice we were able to honor our father’s wishes to die in his own bed after a 13 month struggle with stage four liver cancer. Mother had retired from nursing just a few months prior to his diagnosis, but when it came to the end of his life she only wanted to be his wife not his nurse, so D and I handled the meds and end of life care. What we didn’t know then, but know now, is that Mom’s memory and abilities had been gradually diminishing due to Alzheimer’s disease for several years. But it was only after she was alone that her condition was diagnosed.
Our mother has lived with D and his wife for the past three an a half years since shortly after she was given a diagnosis of probable Alzheimer’s disease. We have two other siblings, but as with our father’s failing health they do not help out with mother’s care. But although prior to his death Dad had charged D with “taking care” of Mom as the “man of the family” I refused to believe he meant that D should shoulder this burden alone. So I budget my vacation and personal time from my job so that I can be available when D and his wife need a break. It’s not a noble thing that I do, but if you can get any message across to your siblings please share this with them.
I just returned from staying with my mother in their home. Going on a vacation to somewhere exciting or new may provide fun memories, but none that could possibly mean more to me than the one-on-one time with my mother. My brother and I now share a very strong bond and know we will be able to face losing our mother (very slowly, by degrees) with the knowledge that we savored the time we had left with her. We will not have to face the time when she no longer knows who we are with any regret that we allowed our chance to enjoy our relationship with her to slip away. I have found that care giving and vacation are not opposites, one a chore the other time to be footloose. I know that this won’t last forever, that eventually she will need professional care that neither my brother or myself (even as a team) can provide. Still, there will be no regrets.
Pam, please don’t feel guilty for being exhausted or lacking endless patience, but also don’t let resentment for what can’t be changed about the past stop you from asking for help in the future. For your sake I hope you ask your siblings to share this experience with you. And for their sake I hope they realize that eventually there will be nothing more your mother will need from them, nor nothing more they will ever receive from her and do not squander this time. Because there will be an end of any chance to show her their love and receive it in return. And regret is preventable by just showing up and doing what you can.
And may you be supported by a sibling’s helping hand. But if it doesn’t come your way, take Jean’s advice and seek community support and divide the cost between your siblings.
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Mom is dying. She will succumb to Lung Cancer in less than six months. I am trying to be strong but there are days when I just bawl like a baby with the anger of it all. We have decided that my sister Lorrie and I will be main caregivers besides the Hospice nurse. I am taking leave from my work so that I can be with her for her every need, but there are days when I just can’t cope and just curl into a ball and cry my eyes out.
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EvELYN,
Your words were so hard to read, you are losing your mom and I am hurting for you. It’s OK to break down and cry. Anger is part of it, and I completely understand. You are a good person, great daughter and now caregiver. DLH will take this journey with you, and will be here when you need to cry, scream and/or vent. You can only be strong for so long. In order to keep up your physical and emotional state, please try to eat well, get plenty of sleep (if at all possible) and stay hydrated.
I know you must feel this is part of a bad dream and wish to wake up from it. I’ve dealt with those feelings too, my mom is in the final stage of congestive heart failure, each day
is so precious.
I think I’ve posted this on DLH before, today it can apply to you and your sister, Lorrie as caregivers, and of course your sweet mom.
~Char
“I’ve endured this discomfort before
and survived it,
and so I can survive it today.
I’ve felt those feelings before and sat with them,
and so I can sit with them today.
I’ve felt like giving in before and held onto hope,
and so I can continue to hold on today.
I made it through yesterday and so,
I can also make it through today.
I can do it.
I will do it.
I am doing it.
I am strong and I am capable. I will not give up.”
Author Unknown
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Evelyn my heart is breaking for you. I too am a caregiver daughter and when dad was passing i think i cried myself into dehydration. Like Char said, cry, it is all kinds of normal to be angry and sad with the situation. Mom is now 91 and I so relate to your feelings of fear and anger and bewilderment. We want them forever and knowing that we can’t is one of the hardest realities we deal with. I am here for you, we all are. You are not by yourself in this. I wish you special moments with your mom for as long as she can be with you, so hang in there. I am glad you have a sister so you two can support one another along with caring for your dear mom.
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Thank you Char, and I am very grateful for my sisters in this. We have been working it out as a pretty good team. I know many people here face a lot more than I do.
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I also want to make you all very aware of something — a warning to make your doctors listen and follow up properly. My father would not have had to have his bladder removed due to cancer if the physicians he went to when he first started to have some complications with urination had investigated at all. He went to more than one doctor at least 3 times complaining of difficulty urinating. This was about 6 years ago. His doctors all told him it was normal, that it was just prostate issues. They checked his prostate and said it was fine, that he was just getting older and this was to be expected.
Turns out that by the time the cause of his problems was finally discovered, it was bladder cancer that had progressed to the point where Dad had to have his bladder removed and have a urostomy (the urethra was re-routed to allow urine to flow from his kidneys to the outside of his body via a hole near his waist where a fresh bag is attached with adhesive to catch the urine).
Unfortunately, in my dad’s case, the urostomy surgery was performed by a student (the VA Hospital is a teaching hospital) who placed the urostomy wrong on my dad’s torso and made too small a channel in the tube going to the stoma itself. Because of the incorrect placement of the opening, the bags my dad uses to collect the urine come loose or fall off quite often causing my dad to often have to cut short any outings or activities in order to go home and replace the bag, which takes an hour each time to do. Because of the narrow opening of the tube that the urine passes through to get to the stoma, multiple infections have occurred and may have done damage to my dad’s healthy kidneys.
Currently, Dad is in the hospital for the third time in two months due to severe kidney infection that has never really cleared up. This time they kept him in the hospital so they could really address this recurring infection issue (and this time actual doctors did the procedures rather than students). The Urologist put tubes in Dad’s back (similar to chest tubes) to allow the infection to drain out of the kidneys.
I do see this latest stay as a blessing in disguise because they did keep Dad in the hospital for long enough to really address the root problem. I am very grateful that they expect the tubes in his back to be a temporary measure because having a stoma on the front and tubes in the back permanently would be darn near impossible to safely maintain consistently. AND NOW, THE HEAD OF UROLOGY HAS COMMITTED TO COMPLETELY RE-DOING THE UROSTOMY once Dad is strong enough to undergo another surgery. The Head of Urology will ensure that a new tube is run from Dad’s kidneys to the stoma and will ensure the opening of the tube is large enough to allow the flow and will not plug up, and he will make a new stoma in the proper place on Dad’s torso so that the bags should fit and adhere more effectively and not come loose or fall off.
Really, this is huge and I could not be more grateful.
But the warning here is, please, if you or a loved one are experiencing issues and your doctor is just making assumptions and not really investigating the problem, get on the doctor’s case or find a new doctor. My dad went to more than one who unfortunately did not do proper follow-up, so you really need to be bold about your needs and your concerns about having the doctor take a closer look.
Best to all of you.
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Laurel,
So happy things will finally be taken care of properly,for your dad, sorry it had to happen the way it did.
I have had numerous “talks” with my husband’s and mom’s doctors, simply stating the facts, neither my mom or husband think of telling them. One intern even said, “well you know best, you’re the doctor!” So of course I said, I am the caregiver, and yes I do know best, when it comes to the meds/protocol you are suggesting. Needless to say, he wasn’t allowed back in the hospital room again. Just one of the many horror stories a caregiver could tell.
All the best, please let us know how dad is progressing
~Char
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Thank you for the example of your courage, Char, and for not tolerating shabby arrogant behavior from that intern.
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Char i had taken mom and visited dad in the hospital years ago and he had a significant mental status change AND a temp of 102.2. The nurse said yes he has a low grade fever, needs to aleep so go home. She even said if we didn’t she would call security. And so i pulled my frantic mom aside and said i would handle it but we had to go downstairs…where i got the director of the hospital’s HOME phone number from the phone book and at 10pm I let him know he had 30 minutes to send in the cavalry because in no universe i know of is 102.2 LOW grade fever and I was terrified at the thought of an 80 something year old man developing sepsis.
I am laughing and crying at my memory of the next morning. I walked into dad’s room into what looked like a physician’s convention and they told me he had been attended ALL night. Dad just looked at me and said OK what did you DO? LOL. I made my mad nurse face at ‘em dad. He lived 8 years after that happened, and we could have lost him that night. ASSUME NOTHING ASK EVERYTHING! Good doctors and nurses will be happy to explain stuff. And if they use language you don’t grasp speak UP and ask for layman’s terms. Sometimes we forget and lapse into medicalese.
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Hello Laurel,
Wonderful news for your dad! I’ll be praying he is strong enough for the re-do surgery soon. You bring a very valuable message to everyone…. Advocate for yourself and / or your loved one. My breast cancer went misdiagnosed for approximately 4-5 years and when I’m asked to speak to groups about my cancer journey, that’s the point to my message. Second and third opinions are great, don’t be concerned about offending your PCP, advocate for yourself because no one else will.
I hope all goes well for your dad and his health gets on the right track soon.
Carla
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Thanks for that testimony to always ask questions, push for answers and never settle! As a nurse, I applaud you for your tenacity on behalf of your dad. Rock on Laurel he is so fortunate to have a daughter who wants the best for him! And, of course, best wishes and prayers for your dad’s success. Pam A.
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Hi all. I read this article over the weekend and thought others might like it too. I practice mindfulness and liked a lot of what the interviewee had to say. The book that’s mentioned in the article is getting some great reviews at Amazon so I went ahead and ordered it.
http://newoldage.blogs.nytimes.com/2013/01/11/taking-a-zen-approach-to-caregiving/?ref=health
Laura
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There is a book called “Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers” by Stan Goldberg, PhD. Similar in approach to the article you cited from the NY Times, I’ve have found it helpful in understanding what is happening with my mother and her decline from Alzheimer’s disease. It also reminds me to be mindful of the present moment so I can respond with patience when time I assist with her care.
Inside there are practical examples and lists of resources that caregivers can look into for assistance. Goldberg was primary caregiver for his wife’s recovery from a stroke, and also volunteers for hospice, so there is a wealth of knowledge he shares. It’s not a long book and it’s well organized so that even if a caregiver doesn’t have much time to read, someone can jump to the section that pertains to what’s been happening lately or what they fear might happen next as a loved one’s condition progresses. Hope that someone finds this useful to their situation.
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Thank you Em the book sounds very interesting, especially the part that reminds the caregiver to be mindful of the moment, something I forget from time to time!
~Char
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Dear Marie,
My deepest sympathy is with you at this time and in the days and weeks ahead. You did well, caring for your dad as you did. Funny how when we’re caregiving, a smile can come easily to our face or we must force one through pain or tears. In any case, I can tell by your previous posts that you cared with love…..and that’s all that matters. May you be blessed and at peace.
Carla
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Marie, I’m so sorry to hear about your daddy…you did everything you could possibly do to make the end of his life and his passing as peaceful and dignified as possible. There’s no better gift you can give than that. (((Hugs))) to you… – Molly
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