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Post-stroke Quality of Life
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UnsureDIL posted:
I'm new to these boards and I could use some advice, but I think a little background info is necessary: My mother-in-law had a stroke in the fall of 2001. At the time, she was a RN for almost 30 years, working full-time in home-care planning. Two of her three sons, including my husband, were students living home at the time. She knew something was wrong, but did her best to hide it. The boys noticed that she was repeating herself and confusing dates/ days of the week and then she failed her CPR re-certification. She did not have a single visual, physical side effect (droopiness, lack of use of one side, etc). It took several months for anyone to realize something had happened. The stroke severely damaged her short-term memory and cognitive abilities in ways that have only seriously manifested in the last several years. The doctors describe her current condition as closely mirroring the first stage of dementia. It seems like her condition is degenerative, as in she'll only get worse. She has not been able to work since her diagnosis. Her daily living responsibilities (driving, shopping, banking, cleaning, doctor's visits, etc) have fallen more and more on our shoulders over the past four years, to the point that we are now looking for a home with an apartment so that she can live with us but still have a measure of privacy. It will make everyone's life easier.

Aside from the myriad issues involved with caregiving, from privacy to family cooperation to insurance companies, which we are handling with varying degrees of success, we are worried about her quality of life. Her limited social interactions immediately following the stroke, baby-sitting for nephews, lunch with friends, trips to AC, are now too much for her to handle. While she can still wash, dress, and feed herself, some days we feel like we have adopted a precocious three-year-old, unable to do things for herself but opinionated enough to refuse our ideas. She is only 57 years old and refuses to even entertain suggestions of adult day-care or senior programs, citing those as being for "old people," not her. She can't volunteer or work, as being asked to remember and execute even the most menial unfamiliar task is virtually impossible for her. Being in too large a crowd is overwhelming, as she is faced with more stimulation than she can process. Being at home all the time is lonely and boring, as she can only really handle watching tv. We need to watch her when out in public to make sure she doesn't walk away and then forget how to get back to us. The move will come in the next year. There is no doubt about it. It will be a hard enough adjustment for her without some personal outlet. Oh, and we're newlyweds. We don't have a family yet, but we would like one. We need help.... What can we do to help her?? Any suggestions are greatly appreciated!

Thanks for "listening;" I know that was long!!
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Caprice_WebMD_Staff responded:
Hello and welcome to WebMD!

It's been particularly quiet here lately due to the holidays so don't give up looking for answers. Hopefully more will be looking in again after the weekend.

Hang in there. *hugs*
 
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suezee52 responded:
Wow, I'm really proud of you and your husband for taking care of your MIL like you have been! Most people wouldn't bother.

It's tough being 57 and needing care like your MIL needs. Have you thought about having her friends come in and visit with her? Or even hiring a companion for her during the day? Since she's not willing to try out adult day cares or senior centers, it seems that she might be better off entertaining in her own environment. Frankly, if I were limited in my activities, I think I'd like an adult day care. When I took care of Mom, we had her go to one. She didn't want to for a long time, but we finally talked her into it. And she loved it! They played bingo, had sing alongs and all sorts of stuff that Mom could do. Since Mom had Alzheimer's, she was pretty limited. But she was lonely too. You could always check into the day cares and find out if there are any with younger adults. You might even call the Aging & Disability Agency in your area and ask them about getting some kind of assistance for your MIL. It couldn't hurt and you might find a program that fits her needs. I'd also check with her doctor, Maybe he knows of something that would work for her.

Good luck and take care.

Suezee
 
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Louise_WebMD_Staff responded:
How are things going with her? Did you find a way to to sort things out yet?
 
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UnsureDIL responded:
We've actually had major developments in her condition and her diagnosis over the past few months. After the completion of some major testing with a more specialized neurologist, my MIL has been diagnosed with vascular dementia. It seems that her severe rheumatoid arthritis both caused and masked her underlying condition. While we're happy to finally have an idea what's going on with her and an explanation for her deteriorating condition, it hasn't made our day-to-day much easier. At least we can "plan" a little better now that we know she will continue to get worse... She, of course, absolutely refuses to accept what the doctor has told us (She kind of flipped on him in the office!) and has chosen to selectively forget that information. We're not even trying to correct her, as it just makes her upset. We have found a house, with an apartment, and are planning to close in June. We're still having a lot of trouble trying to find things to keep her amused. Adult day-care is becoming more and more attractive, especially with her recent diagnosis, but she is still resistant. So, I guess the short answer is no, we have not sorted out anything! LOL
 
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Louise_WebMD_Staff responded:
Yikes on the vascular dementia but yay! a diagnosis.

Keeping my mother amused is hard too...especially when pain issues make it harder.
 
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Rick10602 responded:
Unsure hello, I to am new to these boards and feel a little uneasy discussing things sometimes because I feel people will not understand. Your story is my story in a way. My wife had a stroke a little over two years ago. She is 53 and was a nurse for thirty plus years. As your mother-in-law had a progressive stroke my wife had a sudden synaptic stroke causing her to have all of the same conditions plus the fact that she had suffered from Fibromyalgia for twenty years. So on top of the dementia and the diagnosed early onset Alzheimer's with the memory loss, she is also in pain that gives her bouts of depression. She has all of the same problems you have described no friends, refusal to participate in crafts or get togethers at the community center and being at times precocious opinionated twelve year old.

I do not know you so I will only say that as newlyweds (congratulations) you're going to have all the stresses that come in every new marriage and this is an added stress that is going to put things in a very difficult position at times. This is something that you really need to talk with a trusted person, clergy or doctor before embarking on this responsibility.

Here are a couple of things I have found that you are going to have to get used to. Insurance companies do not see this as a problem but as a cost so do expect sympathy from that bunch. Do apply for Medicare as soon as possible and keep detailed medical records in a binder and on your computer at home. Your going to find her professional friends have or will disappeared like the fall leafs, some family members will not want to deal with it and others will give you unsolicited non-helpful opinions that you need to ignore. You are going to have to have a lot of patience. Make her do the things you know she can do and keep her active. Doing things that she has done in the past keeps her mind active, laundry and light house cleaning, etc. But only to the extent that they start to fatigue but do not let her go to bed. Try as best you can to keep her on as close to a regular sleep schedule as you can. She is going to be bored and unless you want to stop your life to be the entertainment there are things she will have to do on her own. I went and bought my wife a Nintendo DS and the cross word puzzles games, it helps her by making her use her brain. Unless your mother-n-law has had a fast Alzheimer's progression being a grocery store or single department store should be OK, but as you said about crowds a mall seems to be over bearing. I presume you have not have had to deal with the driving subject yet, if you haven't that is the next thing coming. Telling a young 53 or 57 year old that they can longer drive will tax your nerves. I found a little trick early on with this, change the car key on her key ring. Your car dealer or local key shop can make a key that looks like the real thing and even opens the door but without the encoded chip the car can not start and they figure something is wrong with the car. Head on arguments about this is like teaching a pig to sing, you'll frustrate yourself and annoy the pig, if you get my meaning. It is going to be rough. Also talk with her doctor about her taking an Alzheimer's medication because it will slow the dementia progression down. Do take care and do talk with a professional or trusted person so that you and your husband know what your going to be dealing with, it is a lot of responsibility. I know I have been doing it alone for near three years now. Bless you both.
 
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GAP1954 responded:
Rick has given some excellent advice - add to this a strong suggestion to find and become involved with a caregiver support group. Being with other people who really do understand the caregiving life can make a huge difference in your mental outlook and physical being. Rick's advice on not doing too much is very important. It may take longer to get dressed, or was a dish or whatever and you will be tempted just to "go ahead and get it done" but don't. Create as much independence as possible by forcing the issue. If you contact me, I will point you toward a support group or resource in your area. Let me know where you live (zip code is fine) @thecaregiverfoundation@yahoo.com.
 
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bensboo1973 responded:
Welcome to the board. I don't know alot about her condition but i do know about dementia an it sounds very similar. Does she have friends who live close by who she can visit with who will understand her condition? I'm sure after the holidays more people will be on to help with the issues u are having. Stay strong an good luck.
 
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cloud_berry responded:
My Dad has had a series of strokes since 1999, he is past 70 now. Each stroke seems to take a little more from him and strangely the last one seemed to improve his speech in exchange for zapping more of his memory (so they aren't always entirely bad). I can tell you for a fact that they can improve - not by any means a huge amount but he did improve (despite bleak expectations) over the years- just hitting setbacks with each new stroke. In the beginning my father lost interest in just about everything, all he would do was read the paper and watch tv, alot of his friends conveniently disappeared and he lost interest in keeping in touch with the rest. Crowds do frustrate him (and me, most people are great but some people just can't understand). He fluctuates, from being incontinent and having us scared of relapse or pending stroke, to being practically pre-stroke (ok, not quite) but close to 'normal.' I understand about the bills and insurance, still can't understand when people are already under so much stress, why can't they make a better system?

  • *But for your question - what I try to do is I sign him up for things and I don't take no for an answer. He protests the entire way but usually is happy for several days after. A one night program painting a plaque at the library (no 'old' people, but yes he was the only man there), a baking class (told him I didn't want to go alone, had him help mix things and the class was very welcoming, helped it was more a social class than anything), I take him to cooking demonstrations, the air show, a super bowl party, he sat, didn't speak to anyone but he was listening to conversations and was entirely into it-the library is wonderful with cheap programs and our schools let people over 60 take community education programs for free (ie cooking class, just paid the $15 for materials) ... just little things that don't require a commitment and get him out. He doesn't like hanging with "old" people either, he feels bad because he remembers how he was-it is in part a dignity/discouragement thing after stroke, but once he is out, he is happy. It takes some effort and sometimes some planning but it works-never had a catastrophe yet. Even a simple car ride and a trip to the grocery store on a slow evening, it might be painfully slow at times, but it helps him think, it's just good, reminds him there is a world out there besides the house. You might want to watch her for signs of depression if she doesn't want to hang out (common after stroke)-my family is entirely anti-anti depressants but they convinced him to take them and they helped... and remember to take good care of yourselves too. I truly wish you guys the best.
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    orangetwist responded:
    you guys have plan of moving her in a long term care facility? You may take her in an assisted living to help her interact with other seniors and engage in programs that would help her enjoy a normal life despite of her illness. You may also send her in adult village or community. Since you are newlyweds, it would be great if you both spend time with each other, with less distraction from your mother-in-law.


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