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II have been taking care of my 96 year old mom for the past 5 years. She has lived with me for most of that time ... ALL of the past 2 years. I am single, own a home and have a full time job in addition to caring for my mom. She is very sweet, cooperative and appreciative and i love her dearly. I know it could be worse, she could be cantankerous and demanding, or have severe dementia. So for that i am thankful. She does have some major short term memory loss and a little dementia. I do EVERYTHING for her. She can still (barely) ambulate through the house on a walker but often times she poops out and ends up sitting on it and i push her to the bathroom or wherever she is going.. We use a wheel chair outside of the house. She goes to a wonderful adult day care facility during the weekdays while i am at work. So, all in all, we have a great arrangement. But as time goes on i am wondering how much longer i can continue this without losing my mind. I am a nursemaid to a 96 year old while the rest of my family and friends have wonderful fulfilling lives and my life is passing me by. My brother and sis-in-law do help slightly, but are not able to do what i do. If i were not in the picture my brother would have put mom in a nursing home. I am committed to caring for her to the end. I am so stressed out. My mornings are devoted to getting mom ready... washed, dressed, well fed, pills taken (and i have to keep at her to eat and take pills or she has a tendency to sit and stare, or fall asleep lately). I am too drained to worry about myself, so I end up throwing on the first thing i can find, put my glasses on instead of my contacts, no makeup, and off to work I go as soon as her daycare bus comes and gets her. In the evenings it is usually after 8pm when i'm through cleaning up the dishes and then i have barely an hour before i have to start getting her ready for bed. Some people liken caretaking to parenting and i guess in some ways you could say it is, but in many ways, that only a caregiver could understand, it is NOT. It is stressful and sad to watch your parent turn into your child .. age and decline more each day and wonder when it's going to happen ... when and where and how they are going to die. I am extremely conscientious about following doctors orders and trying to do everything i can to keep her healthy. She has some serious heart issues and is really slowing down. My days off are not really days off because i am caring for her. Two months ago my brother treated me and a friend to an outdoor concert (Chicago) at a local jazz festival and another friend came over and sat with mom at the house. When the band came out i began to cry. I was shocked at my reaction and couldn't decide if i was crying because hearing Chicago live brought back such great memories of my youth, or if it was because it was the first time in forever that i was out enjoying life without having my mom strapped to me. . i I think it was both. and i realized how much i miss having a life. The weekends or days off are the worst because mom just sits and gets so bored. I can’t spend all of my time entertaining her. Although I have a hard time getting much done with mom around, there are some things that I have to keep up with. If she sits too long she gets antsy and says she is so bored and just “sits sits sits”. That is when I just lose it. I can’t be her entertainment. I feel for her. It is not her fault. But she has lost the ability to amuse herself. She is a talented musician but has no interest in playing the piano anymore. She has macular degeneration so can’t read. TV, movies, etc have never interested her. She can’t do a thing to entertain herself. So, when she gets bored I feel like I have to do something to help her. Sometimes I take her for along walk around the neighorhood in her wheelchair, sometimes a drive in the car, sometimes a game of dominoes. But, it is so hard being EVERYTHIGN to another person. I feel smothered and trapped and like I just want to run and scream. My house is small and I have no where to escape and if I go into another room for long, she wants to come too. I try not to complain to friends, family or co-workers because no one wants to hear it and no one understands. So, I am grateful for this forum where I can let off steam and know that there are those who understand exactly what I am feeling. Much of the time I just want this to end, but I struggle so with those feelings because and end means that mom would be gone. Thanks for reading and understanding!

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Caregiver's Bill of Rights:
aplaceformom/blog/caregiver-bill-of-rights/
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A quick story I just read about caregiver's and stress...
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What really scared me was on this mornings news there was a segment where it was found that there was a collation between stress and Alzheimer's with middle-age people. I am already noticing memory issues with myself... and I use to pride myself on being sharp. It really rattles me when I go back and read some of my own postings and see the grammar errors that I didn't see just before it clicked on the "post comment" button. YIKES !!
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lizzie, lucy, freqflyer... I understand, I understand what you're all going through... I'm going through the same trying to balance my mother's life and my life... it's very tough and yes, difficult to watch your parent age and falter. You're all doing the best you can do, and I have to remind myself of that... over and over... and over. I almost got really sick last month as my stress was really mounting... It really scared me (after numerous dr visits for myself)... It could have been a lot worse, so I have to 'ground' myself and work on the stress level... As my Primary Dr says "it's accumulative". So, hang in there with me... try to take care of yourself... reinvent the wheel if need be... create new ideas/new beginnings... don't give up...
Lizzie... I grew up in Chgo... so, I understand the nostalgia you mentioned about a yr ago when you went to the Chgo concert... I hope you're doing well.
Love to you all!... It's almost TGIF!
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We also need to remember that if we work outside of the home, have a career, we were trained for THAT career. I can't imagine resigning from work to start a new career where I have zero training. And to work that new job 168 hours a week.

That's why I am hinting to my aging parents [in their 90's and still living on their own] that they should consider hiring qualified people to do that type of work [of course, my parent's wallet is spring loaded to shut very quickly before one dollar get out] because I am NOT trained... I don't know CPR... I don't know how to listen to all the different sounds a Cardiologist hears though a stethoscope.... if my parents fell I couldn't pick them up.... if they want something to eat they would get tired of corn flakes with a side of toast... and if I see one more doctor's waiting room I will scream.... plus I am aging quickly myself.
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Lucy098 I can understand the anger and the fatigue and the frustration. I and do understand that you love your mother, hence the guilt about your feelings. And you paint a realistic picture of depression. Been there, felt that. May I suggest that the first thing you do is get professional help with the depression. That really can be treated, probably with a combination of meds and talk therapy. It won't solve your caregiving problems, but it will give you back your own personality to enable you to deal with them. Please. You deserve that kind of help.

Next, please consider this: No one can provide 24/7/365 care for an impaired adult and retain their sanity. Can't be done. In care centers there are three shifts of trained staff to care for the patients. If help is needed it is just down the hall. The staff goes home at the end of the shift and eats dinner out with spouses, plays ball with kids, has some quiet time alone. Meanwhile the next shift comes in, fresh and rested. Why on earth to we think we should be able to do this all alone, day after day, with no weekends off, no holidays, no privacy, no me time?

It is awesome that your brothers and sister help out some. Thank them. Praise them. Encourage them. It is awesome but it is not enough. If they can help more, encourage that. But if they cannot you still need help. You still need to have breaks, have private time with your spouse, have "me" time. How can you arrange that?

It depends a lot on your mother's financial circumstances. Contact your state's area on aging: https://www.agingcare.com/local/Missouri-Department-of-Health-and-Senior-Services-Jefferson-City-Area-Agency-on-Aging-MO. Find out what is available, and where you should call next. Perhaps an adult day care program will be suitable for your mother. Maybe she'll qualify for some hours from a personal care attendant. Things like meals on wheels for her lunch, or housekeeping help may relieve some of the burden on you.

Sometimes we feel that "it is too early to need help already! What kind of a wimp am I?" Believe me, getting help right from the start is one way to help avoid total burnout.

I encourage you to get treatment for your depression. You deserve it. And then to also get additional help in taking care of your mother. She deserves it -- and so do you and your husband.
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I am just into three months and experiencing depression, guilt, anger and I love my mom but I feel like I'm losing myself. I have four brothers and a sister who give me a couple of hours a week. I am with her all day everyday. My husband is so understanding but it is getting to him too. We have no alone time. All the things we used to do together is gone. I don't want to get out of bed in the morning and find myself sleeping at all different times of the day. I don't want to shower or put on makeup. I see all the comments of what to do but I'm not getting any support. I want to run away and never come back!
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Thanks BrightBod ... i'm going to assume that you're the real deal although after that bizarre comment from the other poster and the anonymity that this board allows, you just never know.
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lol, dusty has more quirks than a 76 ford granada. we need that , it adds diversity and controversy to the forum . dusty thinks her and i are going to spend eternity together. not happening dusty . im going to live on the dark side of the moon and cultivate phsylocybin mushrooms . you can visit if youd like but god *amn bring beer . these mushrooms are ragged to say the least..
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lizzieann, I kind of feel like shakingdustoff is an internet troll, just looking to start a random fight. Anyone who read your post can easily see the love, compassion and sincerity you have in your role as a caregiver. ~ BB
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To shakingdustoff - your comment was totally off-base and inappropriate in a forum where people come for compassion, help and support. I have to wonder if you are even a full-time caretaker. If you walked in my shoes for a month and still had that attitude I would say you are super-human. I love my mom dearly. We have and always have had a wonderful relationship. Unless it becomes medically impossible for me to care for her in my home, she will never go to a nursing home. I give my all to caring for her on my own, in addition to working a fulltime job and maintaining a house. It is emotionally and physically exhausting. My mom is 2 months shy of 97, has dementia and is totally dependent on me for everything. Most days/weeks/ months I do ok, but every once in awhile the stress gets to me and I don't think I can hang on ... and to me ... that is what this forum is for ... to be able to let off steam, reach out for compassion and understanding when it just gets too hard ... without being judged.
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Reading your post Lizzieann is like describing what happens in my home, my mom and my grandmother, and I’m in there in between, because when my mom get exhausted she leaves it to me. And she’s the one who decided to take care of my grandmother 6 years ago, now she’s all worn out because of it.
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I get my mom to "help" me as much as I can. Sort socks, go through the grocery ads for me, Look for a button I know was in this shoe box of junk. Gives her something to do and is actually help. I can relate to the feelings of being overwhelmed and I haven't even been doing it that long. I do get friends to sit with her so I can get a breather for an hour or so. The first time I left someone sitting with her, my mom quite seriously told me I had signed a contract promising to stay with her 24/7 when I picked her up from the hospital. She said if I left I would get in trouble. Nice try, old lady. (I can say that because it takes one to know one). I know I'll be a lot more patient and positive if I get out here and there, plus it gives me things to share with her that aren't related to care or meds or appts. At first she didn't like me to go anywhere, but she would like it less if I let myself get frustrated and burned out, so I go anyway. Now I think she kind of likes having someone besides me to talk to once in awhile, and my friends love her. The other day I took her out to lunch with some of her friends, the first time we've gone anywhere that wasn't a doctor's appointment. She's fragile and getting her ready and into the car is a bit of an ordeal for us still. I start getting us ready at 8 to be somewhere by noon. I looked over at her as we drove, dressed pretty and happy to be going to see her friends who she misses and I burst out bawling. My mom was so concerned. I could barely tell her through the knot in my throat, "it's happy tears Mom", for a minute I was afraid we would never take a ride in the sunshine together just for fun again.I don't care how crazy it makes me, and it does sometimes, this is what I want as much as anything else for right now. Reading these, I will look into day care, she could use a little social life too. I will find a long term care facility if I can't keep up. I know harming myself caring for her is the last thing my mom would want. I wouldn't want to get to the point compassion turned to self pity or the gratitude that she is still with me turned into real resentment. I would never forgive that in myself, and I wouldn't want it coloring what ever time we have left to spend together. God bless and keep all the caring and cared for.
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:)
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Bridge night, your house, every Thursday - bring your own booze? x
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That's a good thought Jinx. Sometimes i think it would be more work for me to come up with those little "chores." And she gets off task very easily - has a hard time focusing ... unless we are playing cards. she is a shark. And she loves word games and trivia, but can't see to read anymore so that is not something she can do alone. she really doesn't like doing things alone. she wants to be interacting which is so hard for me because i need space. i just don' t know if there are any answers.
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Would mom be able to do little "chores" like folding towels or putting decks of cards in order? Or is she smart enough to recognize busy work when she sees it?
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Countrymouse - you are so insightful. And i appreciate your kind words about my mom. She is something special ... always has been and the aging process has not changed that. The daycare that she goes to is a place that i had done some volunteering at through my job, before my mom came to FLorida. So i was very familiar and comfortable with them. It is called Neighborly Care and is a part of the local Area Agency on Aging office which is run by the the Florida Dept of Elder Affairs. Probably too much info ... it is run by a nurse and she is fabulous. Very professional yet compassionate and approachable. It is good knowing that a nurse is on hand at all times. THey also have a wonderful activities person who plans fun and interesting things for them to do throughout the day. They even eat breakfast and lunch there (although i give mom a good breakfast before she leaves the house). After breakfast they do the pledge of allegiance and talk a little about current events. then they do chair exercises to a fun music cd. they play games, that are mentally and physically challenging. they do crafts, they have guest musicians come in, etc. they even have a big old cat name Forest who lives there. The facility is beautiful. and the best thing is that the bus comes right to the house and picks her up and drops her off. If you want contact info they might be able to refer you to a similar place in your area. I like it for the reasons that you said... she is stimulated and challenged all day long and with other people her age. They also have recliners so if she gets tired and needs a nap, she can do that too. But that is not the norm. They try to keep them all going at their own pace throughout the day. Sorry if too much info ... i'm just so thrilled with the care there. Best of luck to you and your mom too!
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I'm interested in hearing how happy you are with the day time services your mother uses: it's something else we're looking into, not as services so much as something for my mother to do that will keep her busy and introduce her to new faces. It's been bothering me, lately, that if my mother is unhappy at home she has no one to confide in, no real time with other people besides me. And, dare I say it, no company of her own age. If it's good for us to know we're talking to people who understand what it's like to be us, then surely it must be equally so for elders. No?

Your mother sounds wonderful. It's hard for us, but then what must it be like having been that active, engaged, vibrant individual and being aware of your own decline? It seems she's even working hard at that, to make it easier on you. I wish her all the contentment and satisfaction of a life well lived. x
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Thanks Jeannegibbs. I had/have a wonderful mother who just makes me want to do my best for her. It sounds as though you gave wonderful care to your husband also. Honestly, the daycare does a better job than i do, of keeping mom challenged and busy throughout the day. I can't say enough about them, right down to the sweet bus-driver who picks her up and brings her home. I will continue to look into home help and i so appreciate your taking the time to offer suggestions and wisdom from your own experience.
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lizzieann, you may be right that nobody can take as good care of your mom as you do. But still you send her to day care while you work. Perfectly understandable. It might not be as good as staying home with you all day ... but that can't happen because you need to work. Bringing some help into your home is the same kind of thing. Maybe you could get Mom ready for the day better than the aid can, but it still may be best to settle for "second best" so that you can have a calmer start to your own day. This in turn may make you a more relaxed caregiver in the evening.

And -- dare I say this? -- sometimes others CAN do just as good a job as we can, or even better in limited areas. As I said, our PCA did a much better job getting my husband to exercise than I could. And sometimes our loved ones are on better behavior with a "stranger" than with us. Certainly their medical expertise enabled the hospice nurses who came into our home at the end to make Coy more comfortable physically than I could. I was there for him emotionally, of course, but was so glad to have someone else there for other aspects of his care.

You sound like a wonderful daughter and a wonderful caregiver. I hope I will have someone as thoughtful of me when it is my turn to be on the receiving end of care.
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Thank you country mouse. i do try to stay in the moment and enjoy my mom knowing that she soon will be gone. but these days of declining health and dementia are not the ones that i want to remember. when i look at her i see the person she was, full of life and passion and purpose, always smiling and making such a difference in the lives of everyone she touched. that is the mom that i already miss and will miss when she dies. i have to admit, shamefully, that i have gotten frustrated with this situation to the point that i have yelled at her ... not often and have never said anything hateful, but just telling her how hard and frustrating it is and how i can't be her everything all the time. Fortunately, she is just the sweetest thing and tries to help me figure out how to make it better. I just love her for that and for so much more. I always apologize and ask her to forgive me and of course, by that time, she has no recollection of anything, which is truly a blessing. like you, i do take my mom places. we go to church on sundays, i take her to concerts that i think she might enjoy. we go to dinner with friends from time to time. we get together with family occasionally. unfortunately, living with me means that she is 1500 miles away from her home and friends. but, we even drive up to illinois to visit those friends and family. most recently we spent a week in a cabin in the mountains of north georgia with my best friend and her mom who met us there. it's a chore taking her places, but it is worth it and i aim to do it as long as i can. some people are uncomfortable with "old" people but, like you, i have finally decided that is their problem, not ours. i guess i doubt that my co-workers care because no one ever asks how i'm doing. my mornings can be crazy, sometimes sad, sometimes i have to make a decision about whether i think my mom is up for daycare that day. i have to make decisons about the fluid building up in her lungs, should she take a water pill that day or not. and sometimes she is so tired and i feel so bad that because i have to go to work, she has to get up at the crack of dawn. i hope i'm getting it right. thanks for sharing your experience and wisdom!
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It is hard. Sometimes you would like just to be able to put her down for a minute, instead of carrying her with you day and night wherever you go and whatever you do…

A few months ago I was reading - without much attention, I must admit, not taking it too seriously - one of those "How To" advice booklets well-meaning organisations are forever handing out to us, so there I was, read read, blah blah, yeah yeah whatever… And then suddenly my eye fell on the questionnaire part which said: "When did you last have a day in which to do whatever you pleased?"

Gasp! I just stood there holding the stupid bit of paper and sobbed my heart out. I couldn't bloody remember. When? No idea.

I felt furious that they'd asked such a successfully emotive question. One that made me think "poor me!" instead of "let's just get on with it, shall we?" I felt as if I'd been tricked into feeling sorry for myself.

But it is, of course, a very good question. And if you are answering it with I can't remember; or thinking of the time you went to a concert and were overwhelmed by the feeling of enjoying yourself - then it's a question you need to make sure you have a sensible answer to. Respite care is the blindingly obvious one, and we're on the waiting list; but I'm a little afraid it'll turn out to be like stopping banging your head against the wall for a week - and then having to face starting again… I hope not. I'll let you know.

Now then. You have co-workers, friends and family who, it seems to me, actually have shown - if not that they understand - that they would like to understand. Give them more chances: they sound like the kind of people who might surprise you and would really like to help. You say "no one wants to hear it" - are you sure? I mean, I agree nobody wants all the gory details, necessarily, or wants to talk about nothing else (remember how tedious new first time mothers are, for comparison?); but your friends do want to know what's going on in your life, and that includes the lumpy bits as well as the smooth. Your old friends may like your mother and would visit her more if a) they were invited and b) weren't afraid of being in the way, which would be great for your mother as well. Some of them may even match you to a T, and also have care giving responsibilities they think no one wants to hear about…

I'm beginning to take my mother to more things with me. Our local book club starts up next week, and she's coming too. Partly because otherwise I can't go; partly because although she won't be able to join in fully she does like the idea in principle; but mainly because I've got past the point of caring whether an activity is "suitable" for very old people and started thinking - well, they can like it or lump it, she's coming. Love me, love my mum.

I know it doesn't get you free. But it does lengthen the leash a bit.

I know what you mean about providing the entertainment. My mother usually picks around about midnight to fancy a chat about the news headlines. And the fact is that by the time you've finished the meds and turned back the bed and done the night time routine after a day of meals and washing and the gay whirl of appointments with the doctor, the dentist, the optician and the hearing aid technician… your social skills are not going to sparkle. A social worker outlining our local caregiver services said brightly: "and it'll give you more quality time with your mum!" Experienced lady, I think she understood the tumbleweed moment that followed that remark. More quality time, eh? Hmm….

So. In your home, call in reinforcements to keep her company, or to keep you and her company. I'm going to start inviting my pub friends to dinner before they go there on Friday night, because at this rate the decade will be over by the time I see them again. If you're doing the entertaining, let it be by taking her out somewhere. And then, just like for the rest of us, sometimes it's going to be a couch potato's dull night in and that's that. It is sad, when your mother loses things that she's always enjoyed (music is particularly poignant, I think) - can't hear the radio, can't see the subtitles on tv, in my mother's case has begun to get upset about sad or violent scenes (she used her alarm to call me in, most unusual for her, and it was to ask me to stop the West Side Story dvd I'd left her watching. "But it's West Side Story! I thought you loved that film?" "I know! I do. But they're being horrible, I don't like it.")… I don't know that you can do anything to fill the gaps previous pleasures occupied. Squeeze her hand and tacitly sympathise? Nothing you can do is going to make her 24 again and brimming with joie de vivre, which I suppose in the end is what they're mourning.

Speaking only for myself, I've begun to feel that the end will come all too soon; and this part I do equate with the looking after small children. Because while it's going on you're climbing the walls and losing your mind and desperate for the time to pass - but once it has, you see that there was, after all, so little time. And it went too fast for you to catch it all. Don't spoil the memories that will be all you have to keep with thoughts of how desperately you wanted to get away. I'm slightly afraid that this boils down to a savour the moment cliché; but what I mean is I'm making this time as good as I can - now, anyway - after a lot of dodgy moments - because I've realised it really will be all I've got left of my mother.

Our caregiving project will be over soon enough. Last chance to get it right..?!

(I agree about the forum. It is AMAZING.)
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Thank you so much Debralee, pstiegman and jeannegibbs for your thoughtful, helpful answers. just having you respond means so much, but you all gave me good advice too. thank you for appreciating what i am doing for my mom and for understanding how hard it is. you have no idea how just having that from you is helpful. I will look into the home care. I think one of my problems is that i dont' think anyone can do it as well as i do. i need to let go of that control and trust others to help. i did recently talk to the local agency on aging and we are on a waiting list for financial assistance for whatever we might need. thank you again so much. i may very well be back letting more steam off and i so appreciate being able to do so.
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When my husband's dementia and general health declined to the point where the wonderful day care program was no longer suitable, I had a personal care attendant come into our home. (I worked full time, from home.) She got him up, bathed 2 or 3 times a week, shaved, teeth in, hearing aids in, and dressed before they came into my office to greet me. Fabulous! Then she made him breakfast. She took him for walks in his wheelchair or walked with him with his scooter. She did his PT exercises with him. (He like it with her. He hated it with me.) She would watch a video with him, or work on jigsaw puzzles.

I cannot say enough good things about getting help in your home. If an aid were getting mom ready for the day care bus while you were getting ready for work, you could probably even live up to your own standards of dress! If the day started out calmer, you might not be so stressed each night. At least a couple of caregivers in my support group chose to have help specifically in getting their loved ones ready for the day. I can see why that is a good choice!

You need more nights out, and some weekend respite. You are in this for the long haul -- this is not a quick sprint. Pace yourself!

If Mom becomes unable to attend the day care program, having had exposure to a paid professional taking care of her may help her transition into whatever comes next. And starting out with the help while you are still in the house, taking care of your own preparation, is a very nice way to break into that pattern.

Bless you for all that you do. I sincerely hope you can keep Mom at home, and bring in hospice at the end. But no matter what our intentions, that isn't always possible, so try to be prepared for the possibility you may need other plans, through no fault of your own.

Best wishes to you and to your mother.
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I feel your pain. We are sixty-something, but caring for a ninety plus exceeds our capacity. Too many caregivers die first, just from being worn out. One of you will end up in a nursing home soon. It might be you unless you find placement for her. God bless you for all you have done.
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If your intention is to take care of her to the very end, how about weekend respite once a month or so. There may come a time when your mother's health will decline to a point where daycare would no longer be an option. Can you then still work and take care of her? You are a kind and devoted daughter, but there comes a time where difficult decisions need to be made that will benefit both you and your mother. Bless you for being who you are.
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