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My dad is in memory care with dementia. The place is well-staffed and well-organized and they really try hard to find ways to keep my father engaged and happy. He hates it. He calls it an institution. I used to spend more time with him and see him four or more times a week. Now that he just complains to me, I spend less and less time with him, just seeing him once on the weekend. I have no energy for him after a long day of work, even calling him has become impossible. This year has been one crisis after another for him. Up until May he was fine and lived completely independently. He was still balancing his checkbook and doing the math in his head. Now he doesn't even remember where he was born. Many things happened to him, I won't go into it. I have tried to do all the right things but he kept getting worse, and his unhappiness is the worst part. I no longer have any sense of self and am have become deeply depressed. He is just going to keep getting worse, and at some point run out of money and have to be in a place that isn't so nice. I feel like I am being sucked down with him and by my feelings of failure. I have two siblings who don't help. At this point it feels like, it's me or him. If I don't stop seeing him and try to have my own life, I'm going to end up in a psych ward. I am not exaggerating. The thing that makes it harder is that once in a blue moon, he'll act more like his old self and joke around and crack me up. The man can be very funny. And when that happens, I know how deeply I will be broken hearted when he is gone, and how I wish I could be with him.

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@llamalover47 Whatever works! I hope your little llama makes you very happy.

I just want to say to everyone, if there is any way you can have a little vacation, even just for a few days, DO IT! I feel like a new person after just four days of being completely un reachable. I'm in much better shape to deal with the situation. I can't recommend it enough.
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I was going nuts...caregiving is hard especially when you have to move away from your life, especially your cats. So, crazy as it sounds, at 67 years of age at the time, I bought myself a stuffed Llama, since obviously I love the animal. I know, right? LOL
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cousinburnie: That is SO good that you got a mini vacay! Yay for you!
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I would agree that you should get some professional help and get yourself some breathing room.
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I can't quit. My only half sibling is mentally ill and can't be relied on, whole nother ball of wax. I'm also partly responsible for mom's closest sister who has no children. Mom and aunt each had cancer this year (78 and 80 yo) but what I'm struggling with most is their boredom and constant requests for emotional support. SO much endless conversation about illness and death and negativity. Would give anything if someone else were around even to go visit them and get their minds off themselves. We have a big family, but there are other sick aunts and cousins with severely disabled children and partners with cancer.

I think it's professional help time for me. Husband cares and comes around and helps with chores for mom especially, but ultimately he runs out of things to say - there are few good options. Trying to take it a day at a time. (SO) thankful for you all. 💗
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Told my sibs this is the last year( 7 yrs in) then I'm DONE. I don't even care where dad goes at this point, he's used me for my ability to make a living. I am not doing this anymore. I can't ,he can live with one of them.
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Update: I saw my father this morning. It seems that the needs meds have started working as he was slightly more engaged. I told him I was going on a little vacation and he wished me a nice time. It was the first real exchange we'd had in weeks. So I am very, very thankful for that. Happy thanksgiving!
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Thanks again, everyone. Because of your input, I decided to take a short vacation over the holiday weekend, my first in two years. My dad is not on a lot of meds. He had a fall a couple of weeks ago and fractured his neck. Luckily he wasn't paralyzed but if he falls again he will be or worse. Because of this, I've put him on hospice. They have him on a couple of psych meds but apparently they haven't kicked in yet. Other than that he's just on a strong pain med. They took him off everything else.

He likes to be active and outside so being confined to a wheelchair and not being able to go out when he pleases really upsets him. Well, I'd feel the same. But I can't fix it, or make him happy. I have to, as you said @marykathleen, put the oxygen mask on first. When he sees me all he talks about is my moving him somewhere else. There's part of me that wishes I could take him home with me but I know it can't be.
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I had to move 400 miles away from my home and family and in with my late mother, where she demanded to live alone in her own home. I wanted to "run away from home" after I had been there for 6 months! Only thing was it wasn't my home. My mother then died while I was there (she was in bad shape when I had to arrive there, but never admitted it).
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Cousinburnie, remember the airline instructions. When the oxygen masks come down, put yours on first, then help other people. I am happy you are going to get some professional help. You must take care of yourself first, only then can you help someone else.
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Cousinburnie, if someone had told me that my life would go where it now is, I'd never have believed it. I took care of mom in my home for 3 years. I was at a very low point last year at this time with mom still at home with me. Since we placed her in a nursing home in January of this year, it's truly like a weight has been lifted. I actually feel fortunate at this point since I was able to officially retire at 62. There's not much more going on in my life socially than before, even with mom out of the house, but I'm fine with that. Two months ago, I seriously started walking outdoors daily like I used to do, rain or shine. I've lost 15 pounds, and my mood has lifted tremendously. I plan to continue this until I can't walk anymore, lol. I live close to the nursing home and actually do visit her daily at dinnertime and feed her. It's a duty I don't seem to have a hard time doing, though that could change. Her dementia is such that she probably doesn't know who I am most days, and I'm actually glad about that for both our sakes; makes it easier to have the visit and see that she's comfortable. She's adjusted as well as can be expected; nobody truly wants to be there, I'm sure, but God knows it's livelier, brighter, probably cleaner than things were here with just me to try to entertain her. The folks there really do their best to try to work with her, and she can be a real handful some days. Dumb as it may sound to you, I hope you can do something as simple as take a walk once in awhile. God bless you.
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Hey Cousin,

I'm glad you posted because your feelings are real. It IS him or you. A psych ward is NOT an exaggeration. Caregivers can end up being more ill than the people they care for. I think because sometimes the decline happens slowly or because it's mental illness...definitely because it's our loved one and our instinct is to help that we think we can do it. But if it was any other disease, we'd call in the medical professionals and experts.

My MIL has a retirement income and we are waiting for VA benefits to come through. Through a series of connections we were able to move her into a memory care facility that was willing to work with us and her current income. She had been with us for about 7 months and we were looking at another 6 months before we could move her. It was a godsend!

In the beginning we wanted her to live with us but we couldn't foresee the reality of what that meant. Just simply not being able to rest in your own home, EVER! No peace, no quiet, no life. We learned all we could about the disease. We helped her gain weight but we aren't skilled caregivers. I only worked part time but I was exhausted. It affected our marriage. I feel that I aged 10 years in 7 months. The disease contradicts everything we know about life, relationships and communication. It is truly devastating and baffling.

I began to not want to see her, hear her, hear her door open, hear her feet shuffling, smell her. I had nothing! Did this mean I didn't care for her? Of course not.

She's been in the memory care facility for about 3 weeks and adjusting well. I'm still exhausted but recovering. I'm not sure I'll ever be the same.

My advice to myself and to you is to do ONLY what you can and no more. No guilt.
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“Self-care is never a selfish act—it is simply good stewardship of the only gift I have, the gift I was put on earth to offer to others.” - Parker Palmer
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Has your Dad been evaluated for depression? That might help his mood.
Yes there is a decline...there will continue to be a decline.
It is very tough to continue to see this man that is on the outside your Dad but is no longer the Dad that you knew.
You need to do what is right for you.
If all you can handle is a 1 time a week visit then that is what you do.
Can you begin to apply for medicaid now? Many places will "find" a medicaid bed if a person has been "private pay" for a few years. so maybe he will not have to move. Talk to an Elder Care Attorney and see what might be available.
Is your Dad a Vet? If so the VA might have some help available. It could be anything from determining if any of his medical conditions are a result of a "service related injury" to Aid and Attendance.
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Dear cousinburnie,

It is clear you are doing everything you can for your dad, but it is so hard. I know its hard for your dad after being independent so long being in nursing home. My grandmother lived at home till 90 before she moved into a nursing. She was not happy about it but after a year she seemed to adjust. My main concern about these facilities is how much medications are given to the seniors. I feel like so many seniors are over medicated and this affects their personalities and quality of care. Because your dad is so negative, I wonder if its worth talking to the nurse or doctor about his meds and see if changes could be made there.

Even though I have siblings I too have always been my parents main caregivers. I had a lot of anger and resentment about this and I don't blame you for wanting to give up. The last few months before my dad passed, I was so angry, I wanted to give up. I do regret feeling this way but I was so burned out. I hope you can find a better balance and remember you matter too. Thinking of you.
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Definitely spend time in your studio; just the change of surroundings, the art supplies and utensils can create a different, more soothing and creative environment.

Do you paint in oils?
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You are all so kind and helpful, I wish I had reached out months ago before I became so depleted. But I guess I will start from here.

Believe me, I know a lot of people have it way worse than me and I don't know how they do it. I really don't.

@GardenArtist, I have little room I call my studio too. I'm an artist. I've only done one small painting this year, as opposed to the ten or so I used to do. I think you've got a good idea, I should just sit in my studio even if I can't be creative, even if it's just for five minutes.

I have a lot of feelings of futility in the face of my father's situation. What's the point of a life if in the end you can't remember it, all your friends are dead or also have dementia, and most of your children ignore you? It's hard to feel creative in the shadow of these thoughts.

From the exchanges here, I realize that I really need to get some professional help. One can't live with only negative thoughts and hopelessness.

Thanks again, all you kind people.
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Staying in crisis mode for long periods of time can really take your joy. I'd try to take a break and get rested, recharge your batteries, maybe, take a mini vacation, if that is possible. Sometimes, that can help us get our perspective back into focus. I'd also not neglect your health. When your body is overexerted and under too much stress, it can have negative consequences. I'd get a checkup and try to focus on your health, both physical and mental. Depression is nothing to ignore. I'd get a professional opinion. Try to be gentle with yourself and consider what would really work for you regarding your dad. You can set that up any way you want.

I recall that when I was rushing to the AL to visit my LO everyday and sometimes TWICE a day, when there were issues or she called, I stopped to realize that as soon as I walked out the door, she had no idea if I had been there that day, the day before or the week before. I was running myself ragged, for some idea in my mind. I had to revisit what she really needed and how I could manage that within my abilities. I questioned what was reasonable.

It's great that you are reaching out for support from others. So many family members don't have much from their own families. I would not forget to have pride in what you do for your dad and be at peace with it. Rarely are people who have dementia as happy as we would like. And complaints are common, regardless of their situation.
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"I swear I don't even know who I am anymore, I just have a vague memory of the someone I used to be. " I think a lot of us feel that way, and I think it's part of the progression of caring. I've thought often that I am so far now from the person I expected to be, so far from living the retirement life that I expected to have, and that prompts me to think more creatively about integrating at least some aspects of that person and life back into the current situation.

When I go upstairs to my "studio", with all the fabric, yarn, patterns, clothes I've made since I began sewing at 13, I see the foundation for my "old self", and it does help balance the existing situation, which isn't going to be forever unless I die first.

But sometimes just "escaping" to my studio as I call it, helps me remember that at one time I had none of that, created it, and it's still there for me when I can get back to it.

I used to love the JAG programs; I thought they were just so uniquely and realistically representative of military people who deal with the same problems we do but even more b/c of their professions. In one episode, one of the officers comments that he's "so far from what he used to be he hardly recognizes himself." That's not the specific quote, but the jist of it.

It was a good reminder, and insight, into the fact that we caregivers aren't the only ones whose lives take unexpected turns. It helps me keep perspective and remember that mid-course corrections are frequently possible.

Burnie, try spending a little more time on yourself, gradually, even if it's just 5 minutes, then 10 minutes. Retreat and relax. If you have a whole day, as I sometimes take, it's literally a miracle regenerator and you can return to the caregiving with more emotional and mental strength.

This probably sounds simplistic, or those who have more challenges to face than I could easily think, "well, she's doesn't take care of two parents with dementia", or something like that. And that's true, nor do I know if I could handle it if faced with it.

But from my situation, I'm trying to start little and work out respite and restoration, and for me, it's a lifesaver, and I hope that my experience will help others facing caregiving burnout.
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Thank you, everyone, for your helpful and kind words. Thanks for the welcomes too.

I'm doing this on my own. Beside the non-helpful siblings, I don't have a spouse. My ex left three years ago. I have a lot of grief about that but he cares about my father and helps out occasionally, more than my siblings for sure. But otherwise I'm living alone, I work full time and that's all there is. It's been a long haul of things in my life getting worse for a while now, but really the last six months have been really one thing after another mostly around my father. Every time I tell people the next awful thing that has happened that can't believe it, they say, wow, you really don't get a break.

You're right, SueC1957, I miss who my father used to be, who I catch a glimpse of once in a while. The truth is, he was not a great father for most of my life, but I moved on from that and somehow we became friends about ten years ago. I miss that person who was my friend, who was interested in my life (when I had one).

You're right, GardenArtist, there are no good choices.

And talkey, you have a point, that I may be triggering the complaints. All I hear from people at the facility is how well he is doing and they can't all be lying.

Thank you, everyone, for not judging me and giving me permission to get myself back. I swear I don't even know who I am anymore, I just have a vague memory of the someone I used to be.

I wish you all relief from the pain and moments of grace.
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It doesn't help when you have siblings who don't help. I hear ya there. I had one sister who tried to help by driving me places but the others........sweet didly. I wouldn't have minded so much if they weren't such a bunch of hypocrites. Oh so sad about Mom but you wouldn't know it from their actions.

You could give up and just throw in the towel or you can just take it a moment at a time. I find if you imagine a whole lifetime of something it seems unbearable but if you live your life in increments it's so much easier. You can handle anything for another 5 minutes, right? Noone knows how the future will go. My Mom's death was unexpected. I thought she would have lived much longer. I'd give anything to have to worry about her again.

So, live day to day, not as if this is going to continue forever.
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Cousinburnie, it's too much, too fast, and all alone -- even if you have a supportive partner or spouse, it's not the same dynamic as support of a sibling. And I don't know if it's harder to be in this alone when you have siblings as opposed to those who don't. But watching -- daily or weekly or monthly -- the decline of your parent, alone, when you do have siblings, is very sobering and unjust. In my case, my siblings were there for lots of help when they were young adults, both from my parents and from me. Now I'm walking thru this alone. My husband doesn't get it. He will help occasionally if I'm very direct, but I alone know my dad and see the fear and loss that he faces. You must take care of yourself, as others have said; else, you'll be no use to anyone. Dad's facility has felt that my visits (daily) were a trigger for his complaints. (I'm the fixer, so let's find something to fix... And he's fine when I'm not there.) I have changed some of my responses, and it's helping. I still go every day bc I know our time is short. But if I needed to back off to take care of myself, at this point, I would. You're not a failure -- he's being taken care of. And now you can take care of you.
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One of the tactics I've found when I feel down, overwhelmed, really challenged and ready to "throw in the towel" is to remind myself how much worse it could be....

I could be in Puerto Rico living w/o power for an indefinite period of time, in literally primitive conditions. Worse, I could be a Sandy survivor, still living in primitive conditions years after the hurricane.

I could be one of the people who become lost in the wilderness and literally freeze to death b/c of exposure and lack of proper clothing or gear.

Then I realize that I only have to deal with human conditions, not catastrophic weather conditions that no one can control.

And sometimes I read Chicken Soup books, for people facing challenges. So many of those people face dire situations far more serious than I do.

I think one of the hardest parts of caregiving though is the lack of good choices, or sometimes just the plain old lack of choices, period.
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I quit. Right now, I quit.

Because I can.

Tomorrow is another day.

Welcome cuz.
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Welcome Burnie,
You kinda' can't quit but you can limit the amount of exposure you have.

My mother and I never got along very well but it's been real hard watching her go through the stages of Alzheimer's. She doesn't even know who I am anymore. She has chronic headaches and she tells me about them at least every 30 seconds. There is no cure. I'm ready to loose my mind. We visit until I can't take it anymore. That's the visit, "I have a splitting headache." Dear God, even though she's in stage 6-7, isn't there anything else we can talk about? I feel at times like I'm loosing my mind too. (I'm past menopause, so that can't be it!)

I'm considering going back to the city I used to live in Mexico for a few days just to "hide". I have other family problems also and I can't remember when I've been this depressed. I can't take anti-depressants because they mess with my heart. It's hard to be a faithful Christian when you feel like your life is crumbling around you. I just wish I could make all this go away. I completely sympathize with you. Sometimes you just want to cry.

I thought this time in my life would be easier (I'm 60). I thought all my problems would be solved and I'd just "coast" until I retire. The next 5 years seems like an eternity. I don't want to watch my mother turn into a vegetable and have to go through the other family difficulties too. Where do we go to give up?

We get together here and draw strength from each other. No one else understands.
Do what you need to do for self preservation. Don't feel guilty. You miss the dad you HAD, not the person he is now. You're in mourning, as I am. But you have to take care of yourself to keep your sanity. Hang in there. Keep posting. Do something good for yourself. You won't loose your mind, it just feels like it. :)
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Yes, many of us quit. I cared for mom with Alzheimer's and her hubby general age related decline for four years 24/7 without much assistance. He was a wonderful man and stayed sharp. Mom however.... I even moved 450 miles away to be able to return to my profession. I quit, not because of mom or hubby, but because of dysfunctional twisted sisters that lived 5 and 10 miles away. I just got very tired of their treatment of me. They did not believe how sick mom was. The distance was good for me as it was impossible to visit as often as twisteds thought I should. We need to care for ourselves first. Then do only what we can for others. No guilt.

Welcome Burnie.
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