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Every so often, my mother will let me know that she wants to go home which is the case today. She says she's not doing anything but eating three meals and staying in bed which is true, but she's chosen not to work with PT. Her sister from out of town called her today and told her that she could go home if she would start walking. I think my mom is also worried about her husband who is looking weak lately and has been falling at home. The last time he and his helper had mom at home she was able to use a walker and feed herself, but was forgetful about medicine. After 8 days, they had all but let her starve, dehydrate and loose all the moving ability she had gained after her stroke in February. I got her into an assisted liviing place, but in April she fell and broke her hip after which she gave up and went to the nursing home. It would be nice if she was healthy enough to go home, but she's not and no one at home is healthy enough for her to go home.

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I'm sad for you, but you have lots of company. People cope with this all the time.

You are making sure she gets the care she needs, and she is making the choice not to do her PT. It sounds as though her husband may be joining her rather than her joining him!
There is a track record on her health to back you up. Of course she says she wants to go home. She is worried about her husband and also she is bored. She likely refuses to take part in any activities offered, to - am I right? That is common.

Hang tough. It's get old to have to explain yourself. Try and keep it short and sweet and move on to different topics.

Take care,
Carol
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How about making your mom's doctor "the heavy," by asking your mother, "Have you asked your doctor about this?" That takes the pressure off you, and you can tell her how much you love her, and are taking care of her other needs... That sets boundaries and puts the "responsibility" for her medical care where it properly belongs, taking the pressure off you. Hope that helps!
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Thanks for the idea about letting my mother's doctor play the heavy.

Along with not doing PT, she does not participate in the activities for one thing she will not let them get her out of the bed and put her in a chair every day for a few minutes.
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That's too bad, as she is only hurting herself for not cooperating, which I'm sure you are aware. Sad. Does she lack competency, and not understand?
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She tells me that she understands but then does not do anything. Her neurologist told me several months ago when we saw him that he could not perceive her muscles even trying to help her stand up out of the wheel chair.

The nursing home doctor told me back in January that she knew when my mother first got there at the end of April that she had given up. Her mother did the same thing after she broke her hip.
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Awwwwww. My heart goes out to her, you, and your family. Does she get to visit with her husband?
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Yes, his helper takes him there almost every day which has not been possible for the last couple of weeks due to a vius which made the rest home go under quarenteen. That may have added to her boredom. I think she feels bad to see her husband weaker and to hear of his falling at home which is not a good sign. My step-siblings really need to pay attention to what is going on with him, but they have their heads elsewhere.
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Can you keep them "connected" by way of the internet, through video chat, telephone, or pictures? This may help both of them.
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They have talked with each other by phone. He is now visiting again since the quarenteen was lifted the end of last week. He has never gone on line and she has not been online in over a year. I asked her if she misses it and she said not at all. She could not do anything with it anyhow.
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Crowe,
My thoughts are with you. Its hard when a person can't and won't help themselves and you are there to watch AND to field the blame and offer explanation to everyone else.
Hugs.
nina
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Sir Crowe,

I can understand how those from our parent's generation may not be adept or interested in using the internet, computers, and all the new technology. I believe that's where we come in. I have read several of AlzCaregiver's blog posts, complete with pictures, of her mother enjoying her daughter's efforts. She is such an inspiration to me, and I have been so encouraged by all she's done. I especially like the one she did about the ballet, and her mom clearly like it as well, as you can see in the pictures. She shares links with it on this site in some of her posts.

I would like to try some of those things with my dad. In fact, she mailed me a wonderful CD of music to help my dad with his Alzheimer's. I have a laptop that I can take along with me on visits to his nursing home.

My dad used to be extremely computer literate. In fact, he helped me out quite a bit while I attended college. He was doing newsletters for various organizations, writing poetry, and operated his business from it. What an amazing world is the internet and computing! I love it, but am just learning, still. I hope to do much more with it in the future. The first time I took my new laptop to dad, I took him picture on it from my built-in webcam. It was amazing! However, he didn't agree, and closed the lid. I don't know if his reaction was "just him," (as in upsetting to him), or due to his advancing disease. Unfortunately, closing the lid was the only way he could communicate that to me. Since then, I haven't pushed it.

My mom had surgery, and I blogged the entire process, every step of the way. People could send her encouraging messages throughout the day. She didn't like it at all, even though it was loved ones who wanted to know how she was doing, and had her best interests at heart. I especially loved showing her a video of sorrow done in sand art. It was meant to encourage her, but she thought it was weird. She was undergoing a lumpectomy for breast Cancer that day. Seems she was not interested in the positives of the internet, and still cannot do anything with it. Mom is still typing away...
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I think I'd start telling her that she's being selfish. If she's so worried about her husband, then why is she not working on getting back home to help him? Maybe if she starts thinking about him, she'll get herself motivated for a change. She needs something to look forward to, and taking care of the man she married decades ago should do the trick right? Tell her to stop with the pity party, and start strengthening her muscles so she can be with him again. Sometimes I think people have to get a little mad to get motivated.
Good luck.
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naheaton ,

So far "mad" has not worked. The helper who now tends to my step father tried to make her mad to motivate her saying 'well are you just going to lie there and give up just like your mother did?"

My mother lived so much of the year for many years by herself at the beach until she starting having seziures and had to come back home that I'm not sure how connected they ever have been until now in their old age. There's not really much she can actually do since he is in a wheel chair, but companionship in an otherwise empty house would count for something although the depakote keeps her so knocked out.

The PT people have commented to me that my mother is rather pampered and likes to almost be begged to putting forth some effort. She is not a very good patient in that regaurd.

I think at this point, I would like the doctor to play the heavy while I encourage her to get out of that bed so that she's not so bored and can attend things that the nursing home activity director puts on every day.
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It is sad when they give up my husband did stop pt about a week before he died before that he was gung -ho for many years -he had been in rehab about 16 times in the last few years of his life. In our state people can only get pt. when they are improving when they reach their own level it is stoped and medicare or medicaide stops paying for it so of course home care or the nursing home stops providing it to them-so when someone gives up there is not much you can do about. As for her asking to go home the ideas presented were great-you might just have to walk away when she starts asking about going home and try not to let it bother you too much -you know she is getting the best care she can get being there,
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Many older people become depressed and improve if their doctor puts them on an antidepressant. After my mom became immobile that happened to her and medication helped. You might want to consult her doctor to see if it would maybe help your mom too
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I am surprised a nursing home would let a pt-I mean resident stay in bed all the time a friend of mine who is in a nursing home has to get up every day even if it is late morning until after lunch with lifts it is so much easier to get them up and back to bed now a days than in the past.
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Thanks, but she's already on an anti-depressent which has helped a lot with her hunger. I don't know if a higher dose would help more or would work given the other meds like a very high dose of Depakote
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Crowemagnum, Secret Sister suggested you could have the doctor be "the heavy" and you could say to your mother: "Have you asked your doctor about this?" In reading that, then the thought occurred to me....If relatives keep pestering you about why your mother can't come home from the nursing home, you could say to them that your mother's doctor recommends that she stay there (assuming that's true). I'm sorry you're not getting the support you need from these particular relatives. I have run into this too from time to time, and at those times I feel like I am standing alone. And it does take strength and resolve to "hang tough", as Carol said above.
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My mother has gotten back to eating somewhat normal food and is more alert than she had been. However, she thinks she's only been in the nursing home for 2 months which I did not correct (she's been there a whole year as of April). She thinks it is great that she has not had a seziure since going there which is true.

Today, during my visit, she did not say one word about going home. She stated her concern for my step-dad and his helper's observatino that he is failing quickly which I've noticed some too, but I don't see him that much. Mom told me that the nursing home social worker and her talked about my step-dad moving to the nursing home and getting a room with her.

Well, the plan at the moment is the helper is going to take my step-dad to the doctor to see what he thinks about him going to the nursing home where my mother is. I don't know if his veteran's benefits will help in this case or not, but this is a matter which is realy out of my hands and belongs to my step-brother who lives very near and his siblings to deal with.

Given how little money my step-dad has plus his small income per month, the only way he could afford a nursing home where my mother is would involve selling the house and possibly the one at the beach for none of his children have a lot of money to come up with basically $2,500 more a month which is what my step-dad would need on top of his income to live where my mother is. I hope it does not come down to that point because it could become very messy. I'm sure it would upset my mother ot hear that her house is being sold, but would be glad to have her husband with her. As her POA, I would be involved in the possible future sale of one or both houses because her name is on the deed for each. However, I am in the position financially to purchase one or both houses which I would then have them fixed up and turned over to a rental agency to handle. This would provide my step-dad with some needed money and my mother would in a sense not really loose her house. Please understand that this is all speculation of my over active mind tonight and I'm not really certain any of this will take place or take place real soon.
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My mother has contacted me again about leaving the nursing home to go home. In our conversation by telephone over the weekend, she told me that the nursing home staff told her to have me to talk with the social worker. I promised mom that I would talk with the social worker on Monday. In her increasingly demented mind, my mother now thinks she's only been in the nursing home 4 weeks and it is time to go home. I think part of this is concern for my step-dad whom she says always falls asleep when he comes to visit.

I called the social worker at the nursing home and explained my mom's request plus her level of care and my step-dad's level of need. Then, I talked with my mother by phone today and explained what the social worker had said that in light of her own health needs, her husbands and that her long term health care coverage will probably not cover 24 hour care at home, she is in the best place to be for right now. Mom wants me to come up there and visit with the social worker about this. I asked her if she would like to have both the social worker and myself meet with her in her room sometime after the social worker goes on a short break from tomorrow through next Monday? She agreed to that and so did the social worker. We will plan that meeting next Monday.

She still wants to go home and thinks that my step-dad and his untrained, uncertified helper can take care of her although she is only there 4 hours a day. I reminded her that the last time that was attempted that she was self mobile which she is not now and that her health failed terribly with them which preceded her borken hip and where she is now. Then she told me about her husband and his female helper were planning to take her on a trip to the beach on Thursday. I just gently and firmly replied "I know that you miss the beach and would love to see it, but I don't see it as a realistic possibility. She thought a bit and said maybe I was right. The one thing she did not want though was to be reminded of her birthday at the end of the month. Later, I called the nursing home staff and reminded them of a note that I put on file months ago about no one checking her out but me and or emergency medical people.

I think one of my mom's biggest fears was about money. I reminded her that the long term health policy she bought in 1996 was basically paying for everything and that as she set it up, they are not longer charging her monthly premiums and that she's already received in benefits more than she ever paid in as premiums. That took a load off of her mind. She tends to forget this but is greatly comforted when reminded of it.
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To be honest, at a nursing home I would get depressed also. There is no socialization, no sense of independence, no normality. The only recommendation I know would work, which you say you have tried, would be an assisted living facility. This would be the only thing that would get her routine and sense of independence back. Yes she may have fell at the last one, but she probably was not at the level of care she needed. Assisted Living can re-asses residents such as your mother and accommodate. Which nursing home as your mother at now? I have some recommendations if interested.
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Mom was at one of the best assisted living places in NC located in Tarboro. I'm not always sure the elderly fall and break their hips for sometimes I think the hip breaks and then they fall. Anyhow which came first does not really matter.

Since then in April of 2009, she has been just like her mother after her hip surgery and refused to work with PT to regain the ability to walk. Her neurologist tested her muscle reactions a while back and found her lower back muscles not working to help her to stand up from her wheel chair.

She hates being moved from the bed to the chair each day but agrees intellectually that she needs too. Her state of dependency would never let her into an assisted living place now. Her neurologist tried to get her to go to one years ago but she refused. BTW, she is at Guardian Care in Rocky Mount, NC.

For several year prior, my mother has been having seizures and after some time started to forget to take her medicine even with the support of the people hired to take care of her and my step-dad as well as myself calling by phone twice a day at the same time for about a whole year. In March of 2009, she had a stroke and following it went to rehab. She regained her ability to walk with a walker and my step-dad and his helper wanted to care for her at home, but they almost let her die and thus she lost everything gained in 20 days. They still think they can take care of my mom (almost 79) at home even in her increased dependent state with that helper, who is neither a nurse nor a certified home helper as well as only there 4 hours a day with my step-dad only able to function in a wheel chair at 86. My mom just like with the previous non professional hired helping person has decided this person is family and yes they are a nurse. The previous 'helper' helped himself to forging over $12,000 worth of checks and my step-dad is so incompetent that he gave the man some money to help defend himself against them taking him to court which my step-brother worked on.
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Sometimes people do give up once they are placed in a nursing home. I've seen it happen many times. I understand it though it may sound strange to some folks. I don't think I would be happy living out my days in a nursing home, either. If it happens, that's the way life goes, but I really do understand when an older adult becomes disenchanted and disengaged from the nuring home environment. What the nursing home doctor said about her own mother and your Mom makes sense to me as well. Not every one in a nursing home is holding on for dear life.
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Heretohelp, I just read your comments. I'm on the same page with you. Living in a nursing home is not normal. It never will be, no matter how nice or progressive the care may be and how ethical and caring some staff may be. It is institutional care with only an illusion of independence.
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Sometimes I think this is one fault of modern medicine because without it my mother's life would have ended years ago with one of those seizures or the stroke and as the administrator of her estate, I would still be getting those unpaid tax years resolved.

As unnatural as it is, the nursing home is the only place she can be given her husband's poor health along with my being out of town plus both my wife and I are on disability with our hands also full of one teenager in college and another one about ready to go to college plus a house that does not have any room for any more people which we bought five years ago.

When my grandmother gave up after her broken him, her son and my mom hired around the clock help so that she lived her last years in her home. She did not have long term health care insurance like my mother does, but she had enough money and my uncle knew enough trustworthy people in that small town that this was all possible for her. Unfortunately, this is not possible for my mother.
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I agree with you, Crowe. Nursing homes are necessary and most helpful when they are needed, including in situations such as you have described with your Mom. I'm just saying that I also understand the feelings that may drive some elders downhill once they are in nursing homes.
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oh yes, and I try to communicate that to my mother that I empathize with her limitations but for her safety that's the best alternative available. I have encouraged her to view the staff getting her out of bed every day and having her sit in a wheel chair as something to go through in order to be able to attend events at the nursing home and to meet other people there.

All this has me so wired up tonight plus other things that even my muscle relaxer and pain meds for some injured upper back muscle injuries have not knocked me out. Praise God that I can see my therapist tomorrow.
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You do what you can and leave the rest to GOD.
You are a good son, father and husband.
Praying for your peace.
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Thanks for the encouragement. I've leaving for my appointment with my therapist in 15 minutes. That will be an oasis.
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I agree with godhelpus. You have outdone yourself in your Mom's care and making the best of your life's challenges, Crowe. Hope your therapy session is everything you need at this moment in your life. Best, IC
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