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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Helpful Answer (6)

Reply to Harrylcnm

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I get exactly what you are saying! But thats not what bothers me the most. Mine is that everything I say about them making their situation better on me, and themselves goes in one ear and out the other and they sometimes don’t even listen to me. I live 45 minutes away, and have my own home and husband, and it seems they would expect me to be the one to come back and live in their smelly (cats),hoarded house with no air conditioning, while I am the one doing it all there. It would be more helpful if they give up their home and move closer to me or live with us. They won’t budge, but yet I feel the heavy guilt of it all because I choose not to live with them and be at their beck and call 24/7. Why on earth do I have to have this awful, heavy guilt that’s making me physically ill!? 🤦🏻‍♀️😖

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Reply to TinaMarie27

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If they move in with you, you will become their 24/7 careslave. Don’t do it.

(20)

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I can relate! Just got diagnosed with breast cancer and the hospital calls while we’re running errands and she assumes it’s for her.

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Reply to KellyB77

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@KellyB77

I'm sorry about your diagnosis. It's time for you to put yourself first. Paid homecare people can run her errands and pretty much do everything else too. If she doesn't like it, too damn bad there's always a nursing home with a bed for her.

(5)

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How much effort, skill, and luck it will take to successfully build my life back after 10 years of primary caregiving ended. Other friends and relatives have gone on with their normal lives during that time.

It makes me realize that I gave too much and drove myself into the weeds. I have to keep trying, though: it’s my life.

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Reply to Danielle123

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Why do you 'have to keep trying'? You are allowed to learn from experience, particularly 10 years of it.

(2)

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I know first-hand the challenges and sacrifices that come with being a caregiver. I cared for my grandmother while also being a single parent to my young daughter, working, and attending nursing school full-time. It was physically, emotionally, and financially demanding.

I learned how important it is for caregivers to take time for themselves—every single day. Do something you love, even if it’s just for a few minutes. Also, find an activity you and your loved one enjoy together. For my grandmother and me, that was cooking; it brought her joy and kept us connected. For myself, daily walks cleared my mind and helped me recharge.

When my grandmother passed, I found comfort in knowing I had supported her fully, with love and dedication, until the very end. It’s not an easy journey, but it’s one filled with moments you will cherish forever.

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Reply to KCaresHomeCare

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@KCares

Why are you commenting here under a homecare company's name and featuring the logo as your profile pic? Solicitation is not allowed here.

(10)

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Not a great answer, but I am just SICK and TIRED of the WHOLE THING.

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Reply to Lylii1

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That’s a great answer! The club we all never wanted to join!

(7)

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Feeling guilty for wanting my life back when i know others are giving up more but knowingmom can'tsurvive without my help. Feeling helpless and overwhelmed and frustrated, not knowing who can help me find a way to finance care for my mom who needs and finally wants a move to assisted living.

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Reply to KayDee7

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lack of appreciation. Not all deal with this, but with later mother I would have almost felt good to help her out with things, sort of a purpose in life

But when she was unappreciative and just told me how much more her friends and relatives kids do for them than I do, I thought WTF

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Reply to Karsten

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Oh I get THIS. Mine was thankful for the recent short outing.
Win/win. She got out & I felt good.

But then there is the *mission creep* attempts.. about how OTHERS go out for lunch or dinner, or stay out for weekends. That's a lose/lose. She compares to others & feels hard done by. I feel unappreciated & why did I bother at all!!

(12)

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When your husband of 50 years thinks you're someone else, like an old gf, and you have to pretend it doesn't hurt your soul.

When everything is hard, but your mostly absent family thinks you're not doing enough and expect you to read and do everything they find that might help.

When the hard days start outnumbering the good, and you know it's not going to get better.

When you respond too harshly because you really need a break from it and know the guilt you feel now will be nothing compared to when he is gone.

When you imagine a future without the man you have loved since you were 16 yrs old.

When you feel guilty for wondering "What about me?" because your kids never ask, "How are you doing, mom?".

When you feel guilty (and judged) because you had no clue he was not brushing his teeth and only using Listerine to rinse them.

When things change every single day and you realize you have to monitor the simplest things.

When the man who always fixed everything is no longer able to and you learn more about riding lawn mowers than you ever wanted to know.

When you feel the weight of doing every little thing by yourself because it will be faster and less frustrating.

When he always used to drive, and now it's just you, and you feel an ocular migraine coming on.

When you feel stalked when you've left the room for 10 minutes and feel bad because you know he feels so lost.

Thank you for listening.

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Reply to breakdownahead

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I definitely can relate! Sounds like my life! Some days are better than others - I hold on to that on the bad days.

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Agree

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Reply to Caredfor4

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A fear that I am alone in dealing with certain issues and physical or psychological or neurological issues that are beyond my ability to handle. I try to work as a team with medical professionals and yet in the in-home care scenario I am on my own to make the best possible decisions with no one else to consult or to tackle the problems. The worry, the overwhelming responsibilities and the feeling that I am alone sometimes really bothers me.

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Reply to Anniemc

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Annie, please remember that we are all going to die. You do your best to deal with all the things that come up, but that is what family members have been trying to do for ther elders for many many years – hundreds of years in fact. Don’t feel that it is an ‘overwhelming responsibility’ to know everything and to do everything possible. Just do the best you can!

(6)

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This is an April question, in case you didn't know.

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Reply to Drivingdaisy

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Daisy, it's an April 2014 thread.

(1)

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My husband and I are both disabled, but I’m the one who takes care of him. He has dementia and he constantly makes annoying noises, though sometimes he can understand a lot and is often articulate. We do have a daytime caretaker, but my husband is the one who demands all of the attention. When he goes to the emergency room, he has learned to make a lot of annoying noise and bangs on the walls to get the medical staff’s attention and (sometimes) get priority treatment. The staff has gotten after him at times for disturbing other patients who are also in a lot of pain and needing help. Most of his spine except his cervical spine and 2 thoracic vertebrae is fused and has been gradually done over the years due to a birth defect. He did well with it until he was about 72, though the dementia started a bit earlier. I badly need a second surgery on my cervical spine and surgery on my lumbar spine. I have bad sciatica and polyneuropathy and myelopathy of my cervical spine again. My cervical spine is more serious. I have had to put this off for the past five years in order to take care of all of the financial issues, house repairs and paperwork that he didn’t keep up to date. I had a class 3 ankle sprain last summer which involved tearing three tendons and had to still keep going, then I started working with a spine clinic toward resolving my spine issues. I have had one issue after another that kept me from pursuing the care I so badly needed…major plumbing issues, was hit by an illegal immigrant’s car with major damage and no insurance on her part. She was deemed at fault and .lied about her insurance. At that point, I took a break in following up on my spine and had all of my routine testing done so I wouldn’t have to do it while recovering from surgery. I had complications of my endoscopy/colonoscopy which took a lot of additional testing and doctor’s visits. I then had cataract surgery and discovered that the gray/purple cloud that had been over my over my eye for sixth months was an ischemic stroke and I lost a lot of the vision in my right eye and am having trouble with the left. Because of this, I am having a lot of doctor’s appointments, lab tests, scans and MRIs which exacerbate the pain in my spine. I’m thinking that perhaps the stroke was caused by all of the stress brought on by taking care of my husband and putting his needs before mine. Meanwhile, he is watching TV, eating lots of junk food and laughing up a storm at comedy shows. He doesn’t seem to understand how very hard it is for me to attend to his needs when I am hurting so. I am 75 now and so overwhelmed. I am trying to keep my inner feelings calm and but it’s so hard. How much is too much? How do I take care of myself with all on the other things that are demanding my attention?

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Reply to Lovemycrew

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"He doesn’t seem to understand how.."
"How much is too much?"
"How do I take care of myself.."

Lovemycrew, you list some big & stressful issues. If you feel comfortable to post your own question, please feel welcome to.

It may be time to consider going ahead yourself & arranging the care you both need. Start with putting your own oxygen first ❤️

(4)

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That even the "experts" and "experienced" are judgey. Especially in this forum. But also the same as you. This selfish woman that now has dementia x3, is so incredibly selfish, even more so than she was before. My mother recently spent 4 weeks complaining that her little fridge is empty, refusing to ask my siblings to help her with her little snacks, 9 - 18 messages a day, "oh your brother is so busy. Oh your sister is so busy. And she doesn't have a car(lies my sister told her)" but I'm raising two 16 year olds, a house I'm trying to repair and update, 2 jobs, but THEY are too busy. So I finally bread down and sneak away from work to take her some snacks and she didn't even know who I was. Literally had no clue. My name didn't even ring a bell. But she knows EXACTLY who to message when she wants attention. I too, could cut my arm off right in front of her, and all she would be concerned with is her fridge snacks and her aches and pains and how much she hates it at the AL.

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Reply to mommabeans

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Oh Dear. Would be mean to suggest bread & water? That's what my relatives from generarions past suggested to fussy eaters..

I get you are choosing the least worst scenario.. (as many of us do, including me). To solve Mom's latest problem de jour vs ignore, get hassled & feel guilt, yes?

(1)

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What bothers me is my 96y/o father’s lingering and Medicaid stress . I am giving up my apartment at the end of July in New York because I cannot afford maintaining homes on two coasts. I had hoped my father would have died during this year, but that is not happening.

I feel very sad that I cannot continue going back and forth every other month but I cannot afford it and I am going to be 70 years old in October and want to prioritize my life. I am tired of living out of a suitcase and want to live a life where I live in California. It is not possible because I’m always off to NYC.

But I still have to say I still feel sad that I do not have the financial and emotional wherewithal to see this through until my father dies. If I knew it was happening this year I would have renewed the lease but seems this situation can go on indefinitely.

I will be relying on the kindness of my friends when make my shorter visits to see dad. I hope im able to make this work.

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Reply to Hothouseflower

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You did so much .
Dad is being cared for .
There is only so much you can do.

(11)

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My mom will be 96 in less than a week. Her emotional outbursts are becoming more frequent. I do everything for her that she needs or wants…but when others disappoint her by not visiting, etc…she lashes out at me…it is getting old and I am afraid it is going to start affecting my health. She lives less than 5 minutes from me.

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Reply to Raine58

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Can you help her to 'lash out' at the people who disappoint her? That is a lot more appropriate than for it to be directed at you. It might help a couple of things: first to put on notice the people who are 'failing' and second to the fact that you aren't the one who is 'failing'.

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Casole , So sorry your situation is so stressful. I hope you are able to extricate yourself from your circus.

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Reply to Hothouseflower

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Casole, I read your last post and it does concern me. Your much loved mother is 79, and you say that she “could be a lot worse”. She will indeed be ‘much worse’ if she lives to 90. “She doesn't like to be left alone” so you or F are tied down very tightly. F “has always been difficult - selfish in many respects, very, very, into making sure his needs are met”, and “English is his second language”. When and where he was growing up, chances are that female relations did all the caring, and that is what he will expect as long as each of them lives. It is probably what M expects as well. You too?

You love your mother dearly. You are currently “in a calm period now”, and “hopefully that episode (F yelling) is behind us”. However you say “I will walk if it's not”.

How can you ‘walk’ in this situation? Your future looks grim unless all three of you face your expectations and change them. Think about it now, not just in 5 years’ time. You have my sympathy in a very difficult situation - unfortunately not uncommon!

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Reply to MargaretMcKen

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She will be 81 in August. I know you are well intentioned but trust me I am well aware of the potential future problems and then some and am exploring all my options while things are calm, including a short list of potential facilities etc. This is a thread about for what bothers you most about caregiving and at that moment that's what bothered me most I also said I wasn't looking for solutions.

So again, it's been a bad day all around and yah my mother is working on her anxiety issues and I'm working on ways to introduce more caregivers. What bothers me most about caregiving right now is people giving unsolicited advice and warnings. I read the horror stories on here. I know I can't be a slave. I worry about what the future holds every damn day. I see people on here daily with situations way worse and the advice is "walk" leave your mom or dad sitting in their poop and call APS... So yah telling dad "see you I'm leaving" if he does that again is totally doable. He had started an anti depressant that I think he reacted badly to, his NP took him off it and is trying something different for him.

Anyway again I know your comments are well intentioned and I'm kinda on my last nerve so don't take it personally. My husband gave me "advice" today, my mother in law asked me about who cuts my mother's toenails and does she do crosswords and what does she read it's like everyone please just mind your damn business and if I want advice I'll specifically ask for it. I'm doing my best to extricate myself from this circus and it's not easy to accomplish.

(9)

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The loss of " me time" with friends, hobbies, hiking. Only way to escape to to pay caregiver. That expense adds to stress.

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Reply to Jayne44

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Casole,
Maybe stop for a while and Dad can find someone else for respite.
Any abuse should not be tolerated by caregivers!

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Reply to Evamar

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Casole, I read your posts again, with more attention to his “complaints never end”. It seems as though F resents having to provide ANY care. He may think it’s ‘women’s work’ and you should be doing the lot.

It may be time for a real talk about his expectations, your own, and also your mother’s - does she really need constant care and attention? Is there is a better way to handle this time? AL is expensive, and M clearly isn’t at the NH stage. However you can visit them in AL to whatever extent you want yourself. Your ‘life’ is also expensive – slaves cost a fortune!

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Reply to MargaretMcKen

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Today it's a parent who is a caregiver to my mom who does not appreciate one iota the respite I provide him DAILY for 3 plus hours and also arranged another person (a close friend of mine) to give him an additional 4 to 5 hours a week so he can go to the gym or for a walk, anything to do with his car, any other errands he needs to run. I coordinate and go to all their appointments with them so he doesn't have to strain his back putting her walker in the car etc. I do the laundry while I'm there, I have cleaners come in once every three weeks. I field the repeated questions about his phone and every other little problem that crops up.

Yet he still yelled at me today. He called to apologize and I said "I appreciate that but in the future you are not allowed to speak to me that way". I had been planning to say exactly this tomorrow but he did call.

The thing is my mom is could be a lot worse! She showers, dresses and toilets herself. She doesn't have any cognitive problems. She has anxiety which is much more controlled now but she doesn't like to be left alone . She's on supplemental oxygen as needed and sleeping she can handle that on her own. She uses a rollator walker and gets around the apartment on her own. He cooks. He shops (she doesn't drive) He dispenses meds and formula thru her feeding tube. She can have some food so he cooks soft foods for her.

I get it's frustrating to be the 24 hour person. However he has respite!! Daily! And yet the complaints never end.

If it weren't for my mother I'd stop completely. Anyway no solutions needed it's just my vent. The fury I felt today was wild when I got home after holding myself back to not upset my others was wild....!

So glad for this thread sometimes it pops up at the perfect time.

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Reply to casole

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Casole, chances are that your father doesn’t see this as you providing respite to him. He sees you as sharing the responsibility of caring for your mother.

On the site we often find comments that children don’t have a responsibility for caring for a parent. We don’t often discuss the responsibility for parents to care for each other. It’s more like ‘if s/he can’t do it, a facility is the answer’. Perhaps this could start a discussion with him - or other posters..

(4)

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My mom developed a fast deteriorating dementia in her last year. Suddenly, I was accused of stealing her money, and then her car. She clearly hated me. It was hard not to take it personally, but I learned to step back, breath and remember that she was the vulnerable one. Even though sometimes I thought she was an old battleaxe! Thoughts like that go with the caregiving territory, and you're not a bad person. Being close to someone who is losing contact with the world is maybe the hardest thing there is. I hope you have friends and family - and this forum - to talk with, share stories - and accept their help. (that's hard sometimes, too).

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Reply to KimberlyKaye

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Thank you. My experience exactly. Mum is 93 and accused me of stealing her car. She refused to make any preparations for old age, so here we are! Through inheritances, fortunately she now has finances which will provide for years of care, but she wants me to do it for free! It's been an eye opener. At 58 I am already making my own preparations! I'm grateful for what this experience has shown me. I shall not be moving in with her, and she will not be moving in with me. 80 hours in her company is my limit.

(5)

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For me it’s the anger, resentment and jealousy. It’s ruining my life. I am not suicidal but find no joy in living. So if the end is near for me then all the better. Nothing I do changes my situation. I’ve been to therapists, social workers, doctors, friends, support groups. All the tactics, strategies, and “solutions” are all good temporarily but none have helped permanently. Because sooner or later I am human and I have only so much strength to endure and hold the boundaries or reframe my thoughts or take a little break. Then. Then is when I am reminded that this nightmare will never end until I die or my mom dies. And it doesn’t matter anymore which is first. I am jealous, as others have said, of other peoples lives. I watch as they laugh and plan vacations or decorate for a party. Sometimes they go to classes or enjoy a special event so effortlessly. That is gone for me. And the worst part is I remember when I had that life. I used to be like them. It’s cruel to recall it—my old life. I am just existing now. Existing to provide the next service to a person who doesn’t even care about me.

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Reply to Momsgoto

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Reading your post made me hold back tears. I’m so sorry this is how you are feeling, it’s truly awful and unfair to be where you are. Maybe try to get outside, a bit of sunshine everyday can do wonderse for our body and mind and it’s accessible and free. Or a quick walk around the block, gets those endorphins going. Again, free and accessible. Big hugs to you:))

(4)

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Seeing my parent’s cognitive abilities decline. It’s so heartbreaking for me to witness. Also, my mom’s hygiene is horrible, to say the least, and she doesn’t care how bad she looks or smells. There is nothing I can do to get her to be cleaner and I don’t know how my dad can stand sleeping with her! When you try to gently tell her about it, she looks at you as if she’s about to kill you. I wasn’t cut out for this type of life. I have no patience and my anger levels are through the roof. They refuse to live closer to us and refuse to live with us. The selfishness is unbelievable. I’ve had it with it all. Very sad, depressed and sometimes suicidal over it all. 😔

They are experiencing a few more ailments as well and it’s hard to keep up with making and taking them to doctors appointment. I am the only child that will help as my brother passed away and my sister is a jerk in another state, 7 hours away and doesn’t talk to any of us due to her being mad over how I decided to arrange my brothers’ funeral. Life is sickening and I want out of it already. 💔

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Reply to TinaMarie27

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I’m sorry you are going through this. It’s not fair to you. I would only arrange necessary doctor appointments only. Not just every 3 months to check in or whatever. These can be tele appointments too. And, get the doctor on board to help with mom’s hygiene issues. Insist he/she order some help and inform mom, don’t ask. Doctors orders. Most out patient rehab places have showers and bathroom. Mom can think she’s going there to have pt lifting weights and doing exercises. What she’s really there for is OT with instructions on taking a shower and washing hair and brushing teeth. Describe in detail and take photos since you’re stuck taking them. Ask doctor for help with ordering home health aide to get her back on track with hygiene or Occupational Therapy who also assesses activities of daily living and hygiene is one. Look to hire a really experienced caregiver once a week that will get mother in the shower and changed clothes and nails trimmed and hair washed and cut. Hair cut can go to Supercuts or caregiver does. Step back, even if that means just going every other day or skip a day. No big explanation needed. Something came up that you had to take care of. Don’t explain. Just do. Do whatever you want, watch tv all day or drive around or go have a meal out by yourself, or whatever. No explanation needed. You are a separate adult and don’t owe your parents anything. Work towards doing what you want to do for them but know your limits. It’s not selfish. It’s the only healthy way this works.

(6)

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My husband is 11 years younger than me. This year I am 89 years old. The hardest thing for me is that he has no memory of our 51 years together. It hurts when he says: "where did we meet? Where did we get married?" We have traveled a lot but he remembers none of it.

We have caregivers who help with the housework because I am physically unable to do it. I am going to become bedridden soon.. When he says: "Why don't you get off your ass and do something", whatever it may be at the time, that hurts.

I am still mentally alert and take care of a all thee finances, repairs to the car and the house etc. He is physically able to be active but he can not figure out how to do the simplest things. If it is absolutely necessary to do something I give him blow by blow instructions. If I really need help he will help me. He cannot remember two things.

I know he has dementia which is following the path of his mother who lived to be ninety five. So I'm thinking the only way I'm going to have some relief is when I go. I am his POA for everything. We only have each other here, his family are all in Ontario, Canada and my son lives half the way around the country from us. We own our house here and feel safe.

So far I have a memory like an elephant and take joy in all the places I have been and all the things I have experienced but I am getting tired.

Thank you for giving a safe space to say things we can't say anywhere else.

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Reply to HazelM

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Hi Hazel. I feel so bad for your situation. Alzheimers is a soul-sucking disease, both for the person who has it and for the spouse.
Can your husband be placed in memory care? As the disease progresses, his confusion and delirium may make it impossible for you to keep him at home. Have either of you made an alternative plan? Who is alternate POA for hubby upon your death? Who is your POA?
Please have a heart to heart with family on both sides. Get plans in place.

(1)

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I was told.. Put up with, Never hit back, Be the more mature one. If you can't say something nice, don't say anything. The message seemed to be: showing anger was 'wrong'.

As I've grown I realised how useful anger can be..

It can lead to saying STOP.
Saying No More.
Having a voice. Using it.

Being assertive is a learned skill.
I am still learning.

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Reply to Beatty

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I like this. Thank you.

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What bothers me the most about my situation as a sole caregiver is that it feels like a nightmare that I can't wake up from. I think that best sums it up! I didn't know life could be this dark until this chapter and this experience. I feel like I've lost nearly 5 years of my life now inside the haze of a bad dream. I have trouble believing that this will ever end and that I will be able to wake up and move on. I worry that this will shorten my own life and that I will become very ill shortly after (or perhaps even before) my elderly father passes away. Too many horrible things to list, and I'm sure that most caregivers on this forum will have experienced them. The little "extra" in my situation is that I'm the caregiver for my abuser. My elderly father (although now weak and frail with congestive heart failure and vascular dementia) was a very abusive person (physically and mentally). If there's anyone else out there in this situation (I'm sure there are lots), please let me know. I don't know anyone personally who has been a caregiver for a formerly abusive parent. It is definitely an extra layer on top of everything else. For me, it truly is a nightmare come true. My father was always the last person on earth I wanted to be near.

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Reply to lesanna

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Lesanna,

Many including myself cared for an abusive parent , it’s not healthy . It is a nightmare . I do believe it has shortened my life . Get out of this if possible.
If possible , your Dad should be placed in memory care using his money . No one should have to take care of their abuser .

If he has a home , sell it to pay for memory care . Or some states Medicaid will pay . If he qualifies for SNF and he has no money or runs out , Medicaid will pay.

Please call your local area Agency of Aging for a needs assessment and help in placing him . Tell them you can no longer care for him .

If he ends up in the hospital for some reason , tell the social worker that there is no one to care for him any longer . Tell them he’s unsafe alone and that you work ( even if you don’t ) . Tell them he is an “ unsafe discharge “ and needs to be placed. Use those words “ unsafe discharge “.

(8)

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I am just starting out (10 months) caring for my 92yo mom with dementia in my home. She acts the same way, like I am supposed to do everything for her, and do it according to her expectations. She tells me she’s sad when I am gone and I usually feel guilty. Recently she told me that her daughters SHOULD take care of her and acts like it’s a big deal when one of my brothers calls.
I’m starting to hate it and think that it will cause me to go deeper into depression.

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Reply to Doolittle1

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Doolittle 1, this will only intensify (her entitlement and your depression). If she’s already 92 with dementia, she needs to seriously look at an ALF.

Could you do some research on appropriate facilities in your area? It’s your home. Not hers. If it isn’t working for you and you already hate it, it would be best to tell her that her needs would be better served at an ALF.

It’s really hard to have any kind of private life with her under the same roof. You have every right to go out and attend to your own life. Her attempt to make you feel guilty when you are gone is manipulative and another reason why she needs to move.

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In my story I was doing something for “the good of the family”…..
I feel abandoned by a mother who has not seen my “grandmother” (her mom) in years and feels that talking on the phone is fine..(she lives in another state)
I feel neglected by my grandmother because she thinks I live for her… bookkeeper, errand runner, house maintenance, and yet work a full time job to maintain my part of the bills..
I am miserable and I want out!!
I dnt like when I speak to the ONE person who needs to step up and at this point take responsibility (sharing is out of the question now) they get emotional on me.. and become Manipulative!!!! as to redirect me from the topic…

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Reply to needmytime203

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It's ok to feel resentment & anger. I believe it is anger that opens our eyes to SEE things a little clearer.

You may not like that your Mother stepping back.

You may not like that others in the wider family stepped back.. or never stepped in.

What if I described it differently?

That those folk CHOSE to avoid stepping into harm's way? Chose to reject taking on others' responsibility. Chose self-care.

Do not wait for others in the family to save you from this situation. That's just pushing Grandma's own responsibility around again.

Push back to Grandma directly. Stand up to her. Say no whenever you need to. Firmly but politely.

One answer can be "No, I cannot help with that. I will be at work"... or I have study/exercise class/plans..

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

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