MIL with Parkinson's

harriethomeownerOctober 16, 2006

Hi -- I've never posted here, but DH is going through a hard time with his mother's illness. She has been diagnosed with Parkinson's for about 10 years, and over the past few years she has been declining bit by bit. Her husband died 7 years ago, a devastating event for her. She went from independent to assisted living, and she is now in a nursing home because she has some dementia and is pretty frail, and in the spring, she had a stroke (or a series of strokes) that caused some aphasia (inability to find the right words). She has had hearing problems for many years, and I think that also hampers her ability to understand what's going on.

We just don't know what to expect at this point. She has all these problems, but basically her vital signs are good. Her biggest continuing health problem seems to be consistently low blood pressure. She basically just kind of sits there all day. She can't read, can't follow what's on TV, can't do any kind of crafts or play cards. She most enjoys just having company. At times she is very sad (understandably), but the doctors say she is not depressed.

DH goes to see her as often as he can, but he doesn't know what to say. At this point, he has used up all his sick leave and vacation leave for the year taking care of her, dealing with the various health crises, and handling her finances. She's a nice lady and does appreciate it, but he's getting so depressed about it. He has a brother (who has a wife and 2 teen-twenties kids) who is not very involved -- he calls the nursing home, an extremely well-run and caring place (IME) -- "the loony bin" and stops by to see her about once a month.

Anyway, any advice on what we could do to make her more comfortable? I know daily visits would be the best thing, but it's quite difficult logistically. I've been thinking of trying to get more involved somehow -- perhaps going to see her myself on a more regular basis -- but what sort of things could we do that would cheer her up? Any advice, and also any words of wisdom for DH, would be appreciated.

BTW, I can't believe what some of you are going through taking care of family members at home.

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I think that you and your DH are doing a fantastic job! And you need to give yourselves credit for all that you already do. A very important thing to keep in mind is to Take Care Of Yourselves. Your own health, family, work and home cannot be neglected for very long without suffering. So try to keep that in mind.

Your MIL is in a great place. AT least you BIL visits once a month---that's better than a lot of people ever do.

Don't let your DH use up all his spare time. Your MIL is well cared for, and there is a limit to what you can do. If I were you, and have the time, yes, I'd definately go visit on my own, separately from going with your DH.

Here's an idea that might help. Put MIL on a schedule. And try to visit when there are other things happening where she lives, even if it's just bingo or a church service, or some other event. When I say to put it on a schedule, I'm not talking about a rigid thing, but say, your DH is trying to visit 5 times a week. He can be just as effective on a schedule of 3 times a week. Same for you. Maybe you can visit on Tuesday and Friday mornings, or whatever. Check the activity schedule of her home, and incorporate those activities into your visit. Makes it easier to get over the "what do I say?" hard part.

Can she get out with you? Try taking her for a drive or to church or just to the grocery store, even if you need to wrangle a wheel chair (if you can do it, it's a handful and don't push yourself.)

See if there is a good social worker at the nirsing home. Maybe there will be a support group for family members, or ask of your local agency on aging, or a church, or even a PArkinson's support agency to see if there is a group you can join. It's important that you and DH be able to talk about your frustrations among others who will understand.

Parkinson's is a horrid disease. My DH's aunt and uncle have both had Parkinson's (did you know that there are distinct 'clusters of this disease? They are in the Fresno CA area). Aunt Peggy passed away in April, but Uncle Bud is still carrying on. It's hard on us and their kids, but they've settled into a routine, and bring Bud back to the ranch for a weekend every two weeks, and we get over to visit as often as we can.

But keep in mind that you are already doing an outstanding job, and give yourselves a pat on the back for doing a hard job and doing it well.


    Bookmark   October 16, 2006 at 6:00PM
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Helene gave you very good advise.
Take a scrapbook with old pictures one time, next time take a scrapbook with new family pictures (gives you a topic to discuss)
Do her nails
Help her do a simple craft if she can --Rubber stamping is one I used with my mil-We made some simple cards.
Keep up the good work-your doing more than lots of people do.

    Bookmark   October 16, 2006 at 6:48PM
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Thanks so much. These are great suggestions.

    Bookmark   October 16, 2006 at 10:20PM
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How about a radio or TV or cassete player and some of her favorite music? You do a lot already,how about making a schedule, say a visit from you or DH every other day?

    Bookmark   October 19, 2006 at 9:05AM
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jannie, she's really not interested in any of that, and at this point, I don't think she could figure out how to work an electronic device. She doesn't even have a phone in her room because she would not know how to handle it. She doesn't enjoy TV anymore; she can't follow what's going on. She really has trouble dealing with physical objects.

There are activities at the nursing home, but she doesn't want to go to them. She spends most of her time sitting outside the door to her room, where she has a good view of the entry to the building and the main desk.

It does sound like she's depressed, but she was never terribly active. Her favorite activities since I've known her (about 10 years) have been shopping and playing bridge.

We do need to make a schedule. It's hard for me to get out there, because I take public transportation to work and the place is far from where I go in the normal course of a day. It's a lot easier for DH because it's about 15 minutes by car from his office.

We'll have to sit down and discuss this and decide how to handle it.

Thanks again for the comments.

    Bookmark   October 19, 2006 at 4:57PM
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If your hubby has trouble finding thing to do with his mother, the music (tape recorder) can be a way of spending time with her. He can play her music and just sit with her. You never know when one little spark will find it way in.

    Bookmark   October 19, 2006 at 6:24PM
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Does the home offer any ideas--she apparently does not to join in, and I understand this, but there are always people who will just come and sit and visit and talk about things like what they have seen like trips, flowers, spring, winter etc. Even teens from different groups do this here. They will bring pictures of local events and show them, play a special instrument, or they will wheel people to a inclosed patio to look at the flowers etc.

    Bookmark   October 19, 2006 at 9:05PM
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Harriet, even if she doesn't want to go to the activities at the nursing home, take her out for a 'walk' and go anyway. 5 minutes in the activity room won't hurt her, and she might even like it. You don't have to commit to staying there. Lots of people, when asked "would you like to go to the activity" (whatever) will say no almost reflexively. Just go, and see what happens. It doesn't hurt, and you get out of the room, and out into the rest of the facility. A change of scenery does wonders.

You and your DH are doing a great job! Now, how about taking one another out for dinner, just the two of you? You deserve it!

    Bookmark   October 20, 2006 at 4:27AM
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