What is the one thing that bothers you the most about caregiving?

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What is the one thing that bothers you the most about caregiving?

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I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......

Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?

Burnout Family Caregiver

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My wife and i have been together 65 years. She spends hours at 3-4-5 in the morning crying endlessly and asking me to HELP HER. I have nothing left in my tank by that time each day. Sleep comes in random one or two hour blocks. We don't have the thousands it costs for memory care unless I choose to go homeless so that the love of my life can survive. Sadly, I actually pray that God gets merciful.

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Reply to CaregivingBill

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Call the Social Services Department of your nearest Senior Center.
Or, the Area Agency on Aging, often housed at the Senior Center.

They can explain that the spouse cannot be made penniless or destitute from the medical and care needs of their spouse.

They can send a Social Worker to your home to make an assessment on her care needs, and can find placement or send caregivers to your home if you qualify.

Talk to her doctor, tell him.
There are medications to help her be less awake, agitated, and calm overnight.

Do not give up or make any huge decisions until you can get help for yourself. It is understandable that you would be burnt out, needing sleep.

OR, call APS today, they will come out and do an assessment, hook you up to help. (Adult Protective Services).

Thank God that you have been together 65 years! There will be help for you too!

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during care most nurses will look at there phone when UNIMPORTENT notifications come in and you look at phone

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Reply to yajeko

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My mom is having terrible anxiety attacks, longer and longer each time. She's 82. Some episodes she sounds like she needs to be hospitalized. She sees a psychiatric NP who used to be able to talk her through it either on the phone or by emailing, now mom doesn't listen much to her, and seems to dread their conversations...she takes any suggestion as a threat or judgment or criticism. She takes remeron (prescribed by her pcp) and refuses to try any different medication. She also pretty much refuses to try any techniques to reduce the feeling (intense fear) and only wants quick solutions to make it stop (but doesn't want to try anything new).

My dear friend who sits with her a couple times a month to give me a break made a list for her of things you can do to reduce anxiety and mom wouldn't take it. Then she asks me "oh can you have her send me that list" it's yo yo back and forth.

As horrible as I feel for her I am incredibly frustrated that I have to be the one to get the panicked calls. Idk how much more my dad can take. He tries but has the same anxious nervous energy, everything is a problem or is going to be a problem which doesn't help.

She has a routine that we keep to. She is well cared for. She can dress, shower and toilet on her own. She goes to activities at the senior center with me. There is a lot that is very good in her life despite using a walker, being on oxygen and using a feeding tube due to swallowing difficulties resulting from a spinal fusion surgery in 2022... she's had a lot of medical trauma. She still can eat some things by mouth. She visits with her great granddaughter every other week. My brothers communicate with and visit her regularly. Her grandson communicates regularly. She's not in a hospital, rehab or nursing home. She's not in any pain.

It's incredibly frustrating to me when she spends hours lamenting how horrible she feels despite all of the above positive things about her situation. I know she can't help it. I know it's her brain and still I want to scream because whatever hours of free time I have are inevitably interrupted by a teary panicked phone call.

I suggested seeing the geriatric doctor she had a few visits with to get his opinion. She said she'll think about it. Idk if this is some kind of dementia setting in. She still reads, her memory is good, she's smart. But the littlest (to me, I understand that) thing that goes wrong sets her off. She doesn't like a book she's reading, she might cry. Etc etc.

Anyway that's what I hate most about caregiving right now....

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Reply to casole

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Perhaps what you need to do is to say that you have actually ‘reached the point of burnout’, not just that you are ‘on the point’ of it. But be clear that your M is also a big part of this, because “she wouldn’t and doesn’t do anything physical to improve her flexibility, her strength, her balance etc”.

You can’t provide the care and the motivation for M on your own. Nor can you motivate your siblings to do what you would like. Face it! Decide what is best for you in this reality! Not what you think would be best if everyone else involved will do what you think would be best, but what can actually be done in the face of what others involved are willing to do.

It may be that a clear decision on your part to stop what you are doing, will motivate the others to change. But probably not! So decide what is best out of the actual options.

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Reply to MargaretMcKen

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I love my mother, but she wouldn’t and doesn’t do anything physical to improve her flexibility, her strength, her balance etc. And I’m not asking her to do anything extreme. Basic activity that will help her pull herself up, fall prevention, and improve her leg pain that she has, from a pinched nerve. None of these movements are difficult, but if done a few times a day, it would benefit her greatly.
What I hate the most is the resentment I now have for my three siblings that live very local, that never communicate with my mom, not as much as a greeting card. They have all chosen to let me handle everything myself. If we all contribute together, the load would be lighter for us all.
I understand they want time to enjoy their retirement, I would like to do the same. I am at the point of burnout.

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Reply to Sonnysprings61

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The thing that bothers me most is the anger. I know most of it is steroid rage, but nothing I think, say, do, smell or taste is right, and a reason for irritability and personal attacks. This is torture.

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Reply to Tiredoldlady

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My mom has been with us for about 18 months. She fell and broke her hip, causing a spinal injury that has left her unable to walk. We moved her into our home, she's 88. It has not been easy, but I think I had most things under control. About a year ago, my husband had pericarditis, which has turned into recurrent pericarditis. They can't figure out how to treat him. He has not been able to do anything - he tires easily. So, while I don't have to care for him the same way I care for Mom, I also feel so lonely. I work full time and come home and care for the house. I hate walking our 80 pound dog, but he can't anymore, so that is my job now. I always thought our 50's would be spent traveling, our girls are grown with good jobs/lives - we worked very hard and sacrificed for them to graduate college debt free. We never traveled or did anything for ourselves. I am so ANGRY - I don't understand why things are this way. I have always taken solace in prayer, but I don't know that God is listening to me anymore.. I am just so tired and scared and lonely. My husband has to lay flat on his back in bed, so we never snuggle anymore. I miss being held and loved - I just feel so angry and hurt and raw. And the guilt - don't get me started on the guilt!

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Reply to Woolie98

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You have every right to feel angry. You were cheated out of a well-deserved more carefree retirement.

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Feeling trapped, knowing that this could go on for years and years yet. And then will there be any time left for me? Will I get to fulfill any of my dreams? All my relatives, friends and work colleagues go on holidays and I just have to listen to their adventures and look at their photos and smile whilst I’m riddled with envy and resentment. I can’t even do a whole day trip as I’m visiting my mother several times a day. And then I just feel the overwhelming guilt.

And the guilt. Always the guilt. Even just a few hours away tomorrow with my immediate family taking my daughter back to her home has my mother getting depressed and then piling on the guilt because we aren’t taking her. Even though she regularly comes with us to visit my daughter on other occasions.

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Reply to LizzyBennet

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Seeing everyone else live their lives and enjoying themselves, while I am 'trapped' knowing that this will not change until one of us goes first.

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Reply to StandSteadfast

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My wife and I are dealing with taking care of my mom and hers. My brother and I take turns staying with mom, but I am stuck here 3 weeks to his 1. He/his wife push we have responsibility BS. I return home to my home to find my MIL who lives with us. All her other sons and daughters also pushing the no time BS.
We know what is going on and I now really hate them and their BS excuses.
They all live within 2hrs at most.
I worked +40 years to build a good retirement and now it is spent babysitting two old ladies. Knowing that we are wasting every good day of health doing this. We are both trapped and knowing this only ends when someone passes.
Cannot plan to do/go anywhere without begging one of these morons to take care of their own mom for a couple of days. My fantasy now is for the wife and I to take our passports and just escape this prison.

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Reply to FBAS0921

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You need to take control of your situation. Your family and your wife’s are not going to do more than they are now.

its time for you to not to stay at your mother’s for three weeks and for you to tell in laws that you are no longer able to have your mother live there.

If these folks have money put them in facilities. Otherwise apply for Medicaid and get them in a SNF.

All I know is I started my slog in 2020 with my parents. It just ended last month finally. All this sacrifice for my two largely unappreciative parents.

You are right about all those healthy days going down the drain. I was so jealous of my friends whose parents did not linger in lousy health like mine did.

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The fact that no other family members are will to put in any REAL help. Split up time where she could stay with her, and/or have her stay with them.
Sharing the BURDEN!
As such I am now trapped babysitting an elderly person, knowing that each passing day, is another healthy day I will never get back.
Resenting each and every person who is unwilling to make any sacrifice for their own mother. Also learning who these people really are and resenting them for this.
Knowing that this will never end until she or I pass.
40 yrs of working to build a retirement and this is it?

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Reply to FBAS0921

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Exactly. My husband and I were diligent and frugal, saving for our retirement dreams and maybe saving some for our kids too.
But he now has FTD and I am his full time caregiver. Better save every penny I have for his care. What a hell of a way to live one's last decade or two.
I've always been very active and healthy but sit here, right now, with a Holter monitor on and a severe left eye infection. I'm exhausted. It comes with the caregiver territory.
Our daughters live in another state and have not once taken the time to fly out here to see their dad or offer any help to me to provide albeit, a short break. It's been 4 years since we moved here.
Their suggestion? I pack everything up and move back...which we can't because we left the west coast and we can no longer afford a home there again.

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The rapid pace of decline.

I took on a 4 hour a week volunteer gig sitting for a friend with alzheimers in mid 2025. Her husband works a factory job for 4 hours every morning.

After the first day I realized she could get out. We had a wonderful 6 months of visiting our art museum 3 times, visiting our historic museum and the 2000 year old native american canoe, visiting the art guild and talking to artists, visiting our local African American museum and talking to the local elder (we are white), and visiting our city hall art museum and our city hall Christmas decorations. We also went to our local market to pick up acre peas and ham hocks.

Her husband requested that we stay home during 2026 so I respected his wishes but we spent a lot of time in her garden and she gave me some plants.

She just broke her ankle and foot and it was a really bad break. She is in the hospital now. I don't think she will ever be coming home. She does not understand that she cannot walk on the cast.

I understand the husband's decision as there were a number of elopements in the car and having to call the Sheriff's department. She would also wake in the middle of the night with anger which was tough for the husband to deal with. The mental health professional that lives in his neighborhood told him to back down from a situation when she is angry so the husband started sleeping in his shed work/shop if she woke angry in the middle of the night.

I'm just sad about the pace of the decline.

On the plus side I got more out of volunteering than they. I was really beaten down from dealing with my sister over my mother's death and estate. My volunteer gig got me back to living.

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Reply to brandee

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Brandee,
Your friend and her husband were truly blessed to have your friendship and care. Thank you for an inspiring account!

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I was dumped into a caregiving situation once my father abandoned the home. First, it was my mother who fought a brief battle with pancreatic cancer leaving behind a severely disabled adult child. What got to me was the ongoing stubbornness of my younger sibling bypassing the toilet and using the floor to void and defecate. I would be awakened out of my sleep in the middle of the night and having to clean up bowel movements and change sheets. I would have to be up at five am to pack lunch and get my daughter ready for school. Later after a full time job as a Nursing Staffing Coordinator, a commute back home to fix dinner and back out for evening classes.
This craziness went on for three years. Finally, I had my sister placed. None of my other siblings had no idea how she ended up in a brand new group home and dad never shared this information with any of them because he was busy painting me as a villain.

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Reply to Scampie1

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Probably that I was thrust into this role that I never signed up for, for someone who is unable to appreciate it, and I feel like I'm sacrificing what was supposed to be the best years of my life. :(

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Reply to LilacGirl

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@LilacGirl

So many of us have been in the same situation as you. I want to tell you something I have told countless family caregivers over the years.

Caregiving only works if it's done on the caregiver's terms. Not the care recipient's.

You're clearly not the one setting the terms here and you need to be. For many caregivers the person they care for is just too unreasonable, stubborn, nasty, and needs a level of care that can't be provided at home. This is when they need to be put into facility care.

Your life is important. You also matter. Many people get guilted into caregiving positions because there's a lot of judgment from others when someone is a family caregiver. Often when a person doesn't allow their entire life to be consumed by a family member's care needs there will be judgment from others. Often there will be from the LO they're a caregiver to. Ignore it. You are allowed to set boundaries and put limits on how much caregiving you will do and for how long. No one has to completely give up their lives, jobs, homes, marriages, friends for caregiving to prove they love their family. This isn't love. It's care slavery.

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The bowel movements. I read quite a few of these, and I think people are being polite, or they are not 24/7 caregivers, because the stench and cleanup are so gross. I wake up dreading it every day.

Also, not having left the house in three years. Psychologists say this type of isolation causes permanent damage. Even in jail, people can't be locked in solitary for three years. I often dream of the luxury of being in prison. I would only be responsible for myself. I would have friends. I would get out in the sun for an hour a day. Someone would do my laundry and cook my meals.

I'm very jealous of everyone who complains about being angry with their family for not helping more. They have family. They have people who help some, even if it's not enough. I have nowhere to put my anger. I've learned to be numb.

But I love my mom, and that keeps me going. I am giving her the best life she can have. She was in rehab for three weeks a while back, and she hated it. I spoil her, and I love spoiling her.

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Reply to LoneRanger247

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@LoneRanger

You're not lying about the BM's. I cleaned them up for 25 years. Many times I've had to vomit because it's so gross. Wearing disposable face masks with a few drops of lavender oil or citrus on them will help a bit.

I hope you have some outside help coming in because you need breaks too. Caregiver burnout is real.

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Love when this thread pops so I can complain lol. Sooooo tired of the monitoring of the temperature.... is it too hot, is it too cold. Is the heat working, is the AC working. Should we turn the AC on? Mom actually said "I hope we made the right decision " when we turned the AC on... like it's life or death. Summer's here, but also it's almost over etc etc etc etc ad nauseum.

Knowing every detail of their lives at every moment, particularly bowel habits, who's gone, who's going, who can't go, who's going too much.

Also the bills....the mail coming is a nightmare. Are the bills paid. Do we have enough. And the medicine, are we going to run out, are the prescriptions ready, will the doctor remember to send it, is it ready, etc etc. It's constant anxiety and ruminating. I'm so envious of people who actually get to separate from their parents and recover from all the nervous dysregulation..

It's comical until it's not. Stay strong out there soldiers!

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Reply to casole

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Your post reminds me of both my father and husband. My father’s favorite topic of conversation was wondering what type of cancer he was going to have. My mom died of cancer. My father never had cancer. Then his favorite subject turned to his bowel movements. I suddenly missed the cancer talks. My husband is 18 years older and not suffering from anything other than getting older. However he acts like your mother where simple decisions hold weight as if they were life or death. A new recipe doesn’t come out as good as expected and he acts like it is the end of the world. Simple decisions he wants to leave to me because he just can’t be wrong.

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It is the constant rationalization why something to do is forgotten or for any other reason. I love him dearly--he is my beloved after a first sight egagement 63 years ago and a happy life together with a rich family live besides. He has dementia/ahlzeimers.
I am his mind, he is my body as I am the physically frail one.
He will not leave to go into a facility (I would move with him)...he is 88 and I am 84.
We do have an aide twice a week but soon we will need more help. Our long term care insurance not helping much as he is in good physical health and I don't
have dementia.

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Reply to bkgranny

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Can you tell husband that you need assisted living and cannot take care of him any more. Essentially, this is likely what will happen. Set the time frame of making the move and move forward with the plans. Sometimes a life situation occurs that does not leave us the options we hoped for. You can both be in a better situation out of your home, with quality time together. If your health fails due this burden your spouse will be alone. Good luck. Life is truly tough sometimes.

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I am sick of everything to do with food. I'm sick of coming up with things to make him. I am sick of coming here for my stay (take turns staying with him with my siblings) and not knowing what food we are out of. I bought one of those dry erase boards and stuck it on the fridge and said if you use up something or if something is running low write it on here. I'm sick of the freezer always being full of bull**** that no one will ever use and not having the room to put any foods I bring over. Same with the fridge. I suggested we label what is in there with what it is and the date that it was made. Nope. So it is a guessing game. I'm sick of finishing with one meal and doing the dishes and then it seems like it is time for the next meal in two seconds. And an appetite seems to be the only thing that my dementia father hasn't lost. Ok, that is my gripe for today.

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Reply to hastalacorona

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Sounds extremely frustrating. Can the threat that you will not participate anymore bring them to their senses ? You are a great organizer and could make the situation so smooth. Can you use meal deliveries to help your situation ? I feel your pain and don't think you should put up with this 3 ring circus.

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I love my mother and always will. But at this time, I don’t like her. She loves everyone but me. I try so hard to make her happy. It’s never enough. Reasoning with her is not possible. One word can set her off. I try to remove myself to another room. She talks to me anyway she wants to. No regrets ever. She does not like to be alone but that is going to happen once I find a place and move. I just don’t care. I feel beaten down.

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Reply to SissyL

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It seems you have come to the point that you realize change is necessary. And it is your right to take care of yourself. There are many options for care/assistance at home. Get her set up with helo, let her know when this will occur and move on. You love family but cannot always love the situation. You are brave as you have plans set.
I am old, 80, so I have a view from my side. It seems many elders are so angry from how life has become and cannot control. Then family members suffer. As my wise mother-in-law said, life is what happens when you have other plans. And one needs to adapt; that seems to be impossible for many. And the younger generation suffers. I am happy to live in an assisted living so that my children can experience a good life while they can. And enjoy all the photos they send with all the smiling faces. In a perfect world, my husband would still be alive and we would not have had to move from our home at 72. We chose to adapt. Our gift to our children was their freedom to be happy and know we were okay.
Good luck and have a good rest of your life.

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The lack of give a shi! By everyone else involved. They don't care if I'm never able to go to school functions with my grandchildren, if my back is broke or my head is pounding or if I have money to buy my loved ones present since I'm without income taking care of Mom. They don't care that every morning I wake crying due to the impossible amount of chores I have to do before the end of the day. They pile in once a month to make themselves look and feel better. I've grown to detest them

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Reply to Bout2drown

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This! I feel every word you stated.Well said. 😞

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Truth.. my biggest boogaboo that I experience while caring for my vascular dementia diagnosed spouse is, I miss sharing our formerly prearranged travel experiences, our former ability to work for pay for beer money so to speak, our former Intimate moments, etc ... We have both had to find ways to grieve our former lifestyle and come to accept that our life together today is different and I have had to focus on new found ways to find our joy, usually one sided, wherever and however we can. For instance, on this beautiful Sunday morning, I'd much rather be taking a ride down to the ocean. However, seeking to limit activity for my spouse, which keeps him calm and content, we are sitting on our porch. As we sit here I meditate and dream of the ocean smell the water feel the wind in my hair, and the sun on my face, the sand on my feet, seagulls in the sky, and there we are sitting in the sand watching the ocean in and out and feeling calm thanking God for the blessing it was beautiful Sunday morning. So what I'm trying to say is.. make the most with your loved one when you can. Laugh about the confusions they have. Make jokes. Be tender. And most importantly reach out for the joy when your loved one speaks or doesn't, look into their eyes deep into their souls and see the higher power that's inside of all of us it is reaching for joy as best as possible each day, no they are safe, in your love, and caring, what life is left and do with it the day brings. It's the best advice I can give us a call for maintaining our mental health through the most trying times of our lives watching our loved ones go through these hard times.

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Reply to ChosenRoad

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I try those things too because I am very grateful to still have him as he is my beloved. I have not been to church in 2 1/2 years because I can't trust him to not drive, use a chain saw or get up on a ladder while I am gone.
He is a "showtimer" for sure when we are at a medical office.
I am used to being shadowed as at least I know where he is and he truly is a helper in the kitchen and still neat and tidy.
Our best times are Sunday nights when the family (those still in town) come for Sunday dinner and he is engaged in conversation on the deck and at the dining room table.
Luckily he enoys water walking at our Y and the library events for seniors and walking our 1/2 mile neighborhood oval every day.
I am grateful we have what we have for now.

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I am a caregiver for my 68 yr old husband with vascular dementia. I am bored and stressed from the constant watching for his well being and having not much stimulating to do. I have been posting on social media some good encouraging Bible texts, and sayings of encouragement which helps me up to a point.

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Reply to donnabeams

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For me, is the burnout of day in day out care for 6 years which has consumed my life. Although I have help with caregivers, I am managing them as well and it is a lot when dealing with my own health issues.

And trying to be really in the zone of being present, calm, loving and patient with my mom who has Lewy Body Dementia when I am with her.

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Reply to LovingHeart26

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Over 2 yrs ago I moved in with my 80 yr old sister to take care of her. Cleaned up her finances by giving her mine . Now when I say she needs assisted living I’m told by other sister and nephew that I’m exaggerating her symptoms so I can do that. I’m 75 and am am down on hands & knees cleaning her up and dressing her. I’m so angry and hurt. Also exhausted.

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Reply to JoyceShau

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Dear Joyce, you are a true angel and I wish I could wave a wand and bring in support for YOU that you so dearly need. God bless you and sending you a big hug. 🌸

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My biggest problem is not being able to understand my wife when she talks. The first two or three words I get, but after that it is all jabber. I ask her over and over but its still the same. Second thing is her always trying to get out of the house, I am sick of locking and unlocking theses door.

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Reply to johnworks

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What bothers me the most has to do with my brother and how Mom claims she treats us 'fairly' and 'equally' (and is quite proud of it). How is it fair to give both children 'the same' everything when one child does it all (me) and the other child does nothing (brother)? She gives us both the same Xmas gift every year, the same praise to friends and family. I'll do 100% of ____ (fill in the blank) and mom will say "my kids take such good care of me". Her 'kidS' / plural?? I moved my entire life on my dime and my time to live near her to help care for her. My brother has shown NONE of this consideration (in time, money or care) our entire lives, yet mom 'rewards' him and we're lumped into the same category. If it were up to him he'd just stick her in a home (on her dime) and forget about her. I am the one helping her on the daily so she can stay where she wants to be (her home). Yet, mom treats both her kids 'the same'. She constantly makes excuses for him about why he's not around. "He has a career" (Um, so do I, with a bigger more demanding job than his). "He has a family" (Um, so do I). I could go on with the examples. Can't she see where her bread is buttered and act accordingly?? When she passes, brother will be the first in line wanting 'his half' of whatever little is left, and mom has it set up so it's all 50/50 because she believes it's the 'fair' thing to do and she 'treats her kids equally'. I'll never understand this. For those who will say to me 'you'll never change her or him', believe me, I already know that. It doesn't mean I don't deserve to have feelings about it. I sympathize with everyone else in a similar situation...

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Reply to DaughterDoesAll

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So sorry that your mother is clueless and ungrateful.

You should examine your motives as to why you are making such an extraordinary sacrifice and make some changes if you are unhappy with the situation as it stands.

It is not fair that the expectation for caregiving falls to the daughters. The sons usually get a free pass. The days of women not working outside the home is over, and it sounds like your mother as with many in her generation don't see that.

If your mother is not paying you a stipend for your hard work, you should ask her to do so. You should get some financial compensation for your many sacrifices.

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My husband and I are the main caregivers for my 94 year old dad. My dad was emotionally and mentally abusive to me and my sister as we were growing up and in our teenage and early adult years. My sister and brother do nothing to help care for him. My mom died in September of 2020. He moved in with us and I really regret that decision. I’m 72, and have health issues which I think might be stress related. We have not had any major down time or respite from him. I’m resentful, exhausted, anxious and depressed. I pray every single day that he will pass and be with my mom in heaven. He is failing gradually. Sleeps almost all day. His balance is bad. He has no appetite. I’m getting to the point where I mentally and physically can’t and don’t want to care for him any longer. This may sound selfish, so to others out there, please don’t judge. All our situations are different. I just wanted to vent about mine.

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Reply to Jaggie

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I don't judge you and if I were you I'd feel the exact same way! I feel bad for you, having said yes to something so long ago and now you're still strapped with the responsibility of it all. Your feelings are NOT selfish. If anything you've been way too generous for way too long, while your siblings get a free pass. It's time for you to have the free pass too, even though you've already paid an enormous price. Time to have someone else care for Dad. Sacrificing your own health and happiness is NOT worth it. Easier said than done, I know, but it's really time...

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The one that, at least so far, gets to me the most is the shadowing. I cannot get up to throw something in the garbage without my wife getting up, even as I start to stand up, and follow me to the garbage can. Brush my teeth, even when I had a cold to follow me to blow my nose. Seems minor compared to many others and I am sure it will get worse, but that is the one that gets me the most.

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Reply to JeffSenglaub

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Or they ask “where are you going?” Or “what are you doing?” Shadowing is tough to deal with. I feel smothered.

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The open-ended timeline. She came to us on hospice with 6 months. We are in the 3rd year of bedbound care in our home. Her care team is more than 10 people deep, including us, the hospice team and hired caregivers. Whew, mercy.

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Reply to CaringinVA

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Yes! Same here. Going on six years and it is hard to move forward with your own life when you are holding space and energy for another. It is quite difficult having so many people in your home no matter how wonderful and important they all are, and how grateful you are they are there to help. God bless you 🙏🏻💗

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It's the overwhelming, crushing wave of responsibilities that never end while caring for my husband who has experienced two cancers, colitis, radiation, two broken ribs, a fractured shoulder and fractured hip. We were married only two years when all of these medical issues and emergencies began. Our seventh anniversary is next month. Right now he's in a wheelchair and uses a hemi walker, and needs assistance with toileting, bathing, dressing and Rx administration. He has mild cognitive decline at 78 but is smart enough to treat everyone around him like a friend and treats me like an employee. My husband has abdicated all responsibility to me and watches western movies all day, waits for his meals to magically arrive on the table, calls loudly when he wants something and he can't get in or out of the bed without me. He weighs 200 lbs. and I weigh 124 lbs. so the strain on me physically is showing in my back, hands and elbow as I try to shift, lift and assist his body as he has Parkinson's disease also. I love my husband very much but I miss the man I married who was so sweet, kind, gentle, fun and full of life. I now have health aides five days a week for three hours each day because I recognized that I was worth time to myself. I need this help for my sanity and soul. I also keep my friends close, exercise by walking my dog four times a day and have a Christian counselor. Without a deep and personal relationship with the Lord I don't know where I would be today. My prayer today is for strength, peace and joy for all care partners. :)

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Reply to KristaW

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Reread what you wrote, and think again. The man you married was “sweet, kind, gentle, fun and full of life”. The same man now “treats me like an employee”, “has abdicated all responsibility to me”, “watches western movies all day, waits for his meals to magically arrive on the table, and calls loudly when he wants something”. Not only that, he is nearly twice your weight and dealing with him is dangerous for your health and safety. This behavior change is not justified as the result of “mild cognitive decline”.

Would you have married him if he acted like this originally? How old are you? He is 78, and this could go on for at least 15 years. Don’t let your Christian values lead to ruining the remainder of your life. They put obligations on him too.

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What is the one thing that bothers you the most about caregiving?

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