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After 4 years of caregiving for my 82-year-old mother with Alzheimer's, I am just done. I am an only child, and we were always very close--almost like sisters more than mother and daughter--but now I just so regret bringing her into my home. I have no life at all. Her care is not difficult but it is unrelenting, and the daily grind is getting to me because I am not by nature a nurturing person.

First it was a family friend who had been an aide coming in 20 hours a week. Then her needs got to where I could not leave her alone, so put her in adult daycare, where she is thriving. But still the mornings, the evenings, and the weekends are all on me. I had resisted respite care but started doing it about a year ago, say 4-8 hours on a Sunday every month or every other month. The turning point came last month, when my job asked me to go out of town for 5 days. I knew this was my chance, and I took it--hired the agency we already used to bring an aide in 24x7. I felt like I had been let out of prison, and I hated coming back to the daily grind. Thanksgiving weekend was torment. Now I have to face Christmas and New Year's, too--six solid days of caregiving, listening to her sigh and moan over nothing, toileting her, dressing her, having her ask can she visit her mother, who died before I was even born. It's not her fault she has Alzheimer's but it's not my fault either. And she went so far downhill those 5 days I was away that I don't think live-in care or a nursing home is an option--daycare really delivers the maximum quality of life for her. It's just that I'm too the point that everything she does irritates me, and I know I'm short-tempered with her and scream at her on the slightest provocation. I just want off the merry-go-round. But can't afford unlimited respite. What do I do? I want my life back!

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bridges, you have my full sympathy. It's not the big things, it is the little ones. My mother has vascular dementia and is very slow and confused. She has trouble hearing and understanding what I say. Much of my day is spent waiting for her to do something and hearing "Wha?" to everything I say. I imagine even Mother Teresa would get upset with saying everything three times all day every day.

I was going to go out this afternoon, but my mother decided to put up the Nativity scene. I cancelled my plans, because I knew there was a greater chance she would fall. That was disappointing.

One thing I don't like is what I'm becoming -- an irritable old woman. I try not to be. The problem is that patience has never been a strong point with me, so moving at the pace of a snail and saying things repeatedly is very hard for me. At first it was very good at teaching me patience, but now it seems more like it's teaching me how to hold up under torture... Well, it's really not that bad, but you probably know what I mean.

I try to take some respite time every day. As time wears on, it is not so refreshing anymore. What I think would work best for me is if I weren't so alone all the time in doing this.

Funny thing is that my mother was putting away family pictures when she was putting up the Nativity scene on the bookcase shelf. There were pictures of the sons and grandkids and even the spouses of the grandkids. There was none of me. And I thought wasn't it strange that the only person not in the pictures was the only one there for her. It would be so much better if we had strong family interactions and people about. I don't think I'd even need respite if there were people to share the load and revitalize each other.
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This is difficult but you probably know the answer. To avoid going down with the ship she needs to be in a skilled nursing care facility. Yea I know, oh the guilt, I could never do that, she would be so hurt, but if mom was still able to reason properly she would not expect you to sacrifice your life for her care. This could go on for many years.
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As an only child I can relate. I hear the undertones in your comments. You want to do the right thing but your losing your mind! Anyone would. I have too. I sympathize with you because caregiving is the hardest job in the world. Then there's the guilt for getting angry and resentful towards a parent. Worst part...no real answers. Everyday, I think how easy my life would be if I just placed my mother in a long term care facility but I know it would literally kill her. She's been with me 12 years. I think you should save your funds and get away for an extended period of time. Totally disconnect. That's what I do. I leave for a week (partly work related but mostly respite) and get my life back...wooooohooooo!! Joy joy joy! Then I dread dread dread coming back. For me, now approaching 60, I try to stay healthy and strong so I can reclaim my life someday and enjoy it. In the meantime, I'll continue to care for my mother but if the day comes when she has a major setback that requires hospitalization and rehab, I will reconsider whether she comes home or to a long term care facility. I think there's a limit to what any sane human being can tolerate. This forum is such a great place to connect. We're not mean witches, maniacs or bitches we're just plain tired. Get away when you can for as long as you can because no one is promised tomorrow.
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I identify with the comments about returning after respite. I went away for 3 days in September. It was a hassle to get caregivers etc. to take over for me but anyway..................coming home was really weird. On the 2 hr car trip back................I felt relieved from guilt at being away. I also felt anger at having to come back. But here's the weird thing......... upon arriving home, I felt comfortable because I could settle right back into my role as "recluse." This really bothers me. I've become a recluse and never dreamed that would happen to me.
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My mom declined last year. SHe was hospitalized 3 times in 6 weeks. The last time she went to subacute rehab and we realized -after three months of taking care of her 24/7 that my siblings and I could not do it. She stayed at the facility where she went to subacute. She was not happy but fortunately my brothers and I were on the same page about her care. My only sister was not and is still resentful that we would not let her take mom to her house and hire aides. Mom's doctor felt she needed more care than that would provide. THe facility were she is treats her like a princess. Last month we thought she might have pneumonia. Within 4 hours they had a chest xray done (at the facility) gave her antibiotics and breathing treatments. fortunately she did not have pneumonia. They have found so many little things that they corrected with her meds, her diet, her activity level, etc.
We never could have kept up with all that if she were at home. I do know the guilt that you feel when you are involved in a decision like this. But in our case, it turned out to be the best decision. (Not that I don't feel guilty at times) I truly believe that if mom were not at this facility she would no longer be with us. Having the nursing care and ancillary care that she is receiving 24/7 has made a difference. She is safe and well taken care of.
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I can really sympathize with everyone commenting. My mother was living with me for 3 years because she was not longer able to live on her own. Shortly after moving in with me she was no longer able to drive and she was diagnosed with Parkinson's. For over 2 years it was one doctor's appointment after another and constantly shopping for her and still she was never satisfied. She could not afford assisted living. I tried to get her to use the money she did have to relieve me and hire someone to take her out a few days a week and walk with her. Unfortunately she did not get along with anyone and always wanted me to do everything. Finally, I went with her to an eldercare attorney and they told us she could qualify for Medicaid "community care" (which is home care or assisted living) even though her income was a little too high. In NY state you can send your excess income to a "pooled trust" and they can pay bills on your behalf with that money. By doing this you can qualify for Medicaid. The next step was to find a place, this was a difficult step since they were all depressing. We finally found a place that was acceptable to her. She did not want to go, but I explained to her repeatedly that I would not be able to care for her when her condition worsened. My house was not even set up with a bedroom and full bath on the lower level where she would not have to go up and down stairs. This facility has many levels of care so as her condition worsens she can get the care she needs there without moving again. Yes, was very difficult and still is. She has had 2 hospital stays and is now in their rehab unit. However, I know there is no way I would be able to take care of her at my house with her current condition. The place is not perfect and I continue with my caregiving visiting her frequently which is even taking more of my time. I try to build a friendly relationship with her nurses since she is tough to deal with. Finally, by doing this I saved my own sanity, because even though I am still very much involved I can go home at night and know she is taken care of and I get a break.
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OMG your story sounds like mine!

Whenever I hear someone say "thank god it's friday" I cringe!
Noooo that means it's the weekend!!
What to do with Mom all weekend..

I was so happy to see that the Day Care was open until noon on Christmas Eve and it's a full day on New Years Eve.. But that extra day home means more stress for both of us..

If only she was a kid and would play with her Christmas presents all weekend! Lol

On Saturday's I try to take her out in the morning maybe the mall.. I bought a wheel chair for her so she doesn't have to walk.. We'll go to lunch or I've been known to bring it with me and eat there.. It helps me to get out of the house so I'm not looking at what needs to get done!

Whatever you need to do to kill time...
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I did not realize the damage that could be done from caregiver burnout. I have taken care of my terminally ill mother and now my father for over 10 years. So little respite and the toll has been devastating. I have had suicidal thoughts and have withdrawn from everything. I wish I would have found this website long ago, even if just to tack about it. What does not exist are these kind of services for the caretaker. Please, no matter what, take time off. The comment about becoming a recluse for Marialake really hit home. I am only now breaking out and it is difficult. Don't become comfortable with being a recluse.
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Oh, my, yes it is all the little things that add up over time. I am an only child, too, and moved my mother in with me 2-1/2 years ago in order to stop the frequent trips to her house on a daily basis: insulin injection at night was a must, but lost cordelss phone or billfold, TV remote not working, medicine mix-ups along with a kitchen breaker that seemed to pop every other day, bills to supervise being paid so checks didn't bounce... How foolish I was in thinking having her in my house would be easier. It is and it isn't. We were closer in our relationship then than now, and the guilt that brings can be awful. So many layers of resentment, guilt, exhaustion. I was diagnosed with Rheumatoid Arthritis 25 years ago, was able to raise my kids, work as a Realtor and kept the disease at bay. In the two years my mother was here I fell apart. My only real respite has been a knee replacement (3 nights in the hospital & 5 in a rehab facility) followed by a hip replacement (2 nights away). Looking forward to next year and another knee replacement. Lol! Otherwise I reside in the living room, she watches TV in the family room and we interact at meals. I have researched adult day care in our area, and they are not close or hours don't work or too costly - and she won't go. I've asked if she would like a friend or companion to take her out, as it has been too hard for me to manage two walkers ( into the car, put one back in, park, get out, reverse proceedure) on outings these past 6 months - except for doctor visits! - and she absolutely refused. After all the surgeries I will be mobile and will be able to go places with her, so there is light at the end of that tunnel. But then my 'vacations' are over! I, too, have become reclusive, but I think it is because of my health issues as much as the caregiving, as Mother is fairly well able to function without much supervision yet. I plan on going back to volunteering again, which got me out for a few hours a week on my own before my health failed. But then I feel guilty about needing to escape and angry that I have to leave my house to have 'me time'. It is very difficult and I give all of you who have been doing this longer and dealing with tougher issues so much respect. In answer to the question: better to have one long or many shorter respite perods - I think it would be harder to even think about going back to the situation after being gone a long time. More and short would be my choice.
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I love adult daycare! I hate that they aren't open longer or on a Saturday here and there. My mil loves it and thrives as well. I had a nurse help me for respite care so I could start attending my kids activities or just have family time. But... My mil has gotten worse and I can no longer give her a shower etc... Too hard. So, we have help come in only from 630-830...toughest time with her. It's time for me to run my kids, or even to just fold laundry. It lessons the stress! I do this about 3 nights a week. I notice a difference in me. Hope this helps. Caregiving is hard, only the ones that go through it or have gone through it understand, others think it's a piece of cake.
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