What to do and when??

DeirdreDecember 30, 2005

Hello to all here and wishing you the best of holidays. I am new to this forum and have been looking for a place for some practical advice. From what I have read here, I see much compassion and knowledgeable experience.

In this case, I am not the caregiver, but the daughter. I'll try to keep this simple. My mother has dementia and has been getting worse the last few months. She hasn't progressed to the point that she would be comfortable in a home, but life has become difficult for my dad. Mom still knows everyone, but is unable to occupy herself. She no longer reads, sews, cooks or anything. She needs to be "entertained" all the time. As long as she has people around her she manages quite well. My dad has had non-hodgkins lymphoma for the last 11 years. During this time he has undergone every treatment possible, including a stem-cell transplant last Nov/Dec which failed. It was at that time that we knew Mom could not ever be left alone and had caregivers in to help while my dad was in the hospital for a month. They live 60 miles away and I am unable to do the drop in for a few hours as regularly as would be helpful. At the moment my dad is in the hospital undergoing more chemo and there is a caregiver at their house. Ok, that paints the picture at the moment.

What I need is advice on how to advise my dad. He thinks he can continue to care for her (this is his purpose for continuing treatment - to be with her). I applaud his noble efforts, but it is too much for him. I have pushed for him to have regular help come in, and I believe he realizes that he must. He just doesn't have the strength to take care of both of them. I think that having a caregiver in the home is probably the most economically reasonable solution for now - otherwise it will be living costs for both in a facility because he wants to stay with her.

From your experiences, where do you draw the line and say it's time to move on to a facility? If we could find something for her to do at all that would give him a bit of a break during the day it would be great. The only things I see written won't work - she can't wind a ball of yarn all day... So far, the only solution I see is to have another in to entertain her for a while, but when they have had some help (from a caregiving company), they ended up letting them go because they didn't know what to do with her. It seems the caregivers are there to do things like bathing and dressing (and she doesn't need that much help with those things), but of course cleaning and working aren't part of their job. (They do have a cleaning lady.) I suggested they polish silver one day or something like that, but it doesn't seem to fit in with the job.

Sorry to go on so long. It's difficult being the daughter who can't solve their problems. I just wish I could come up with a few suggestions that would make their life easier.

Thank you for listening.

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Have you thought about adult daycare? There are programs specifically geared to those with dementia. Professionals direct the programs and know how to occupy and encourage the minds of the seniors. I would suggest calling your local Council on Aging/Senior Center for information, also. Those wonderful folks have a handle on so many community services and are a wealth of knowledge.

Bless you for being so concerned and watching out for your folks. It's hard when the roles shift. Someone told me a long time ago that no matter what, I would always be the child and my mother would always be the parent. Sometimes the parent resists what the child is telling them! (like we used to when we knew it all as teenagers -- LOL)

    Bookmark   December 30, 2005 at 10:49PM
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We have started looking at some day care options, but have found none that are appropriate yet. They live on a lake a bit out of the way, and the nearest facilities are probably 1/2 hour away. There they have senior day care, but the activities won't work for her - she couldn't play bingo or do the arts projects. I guess I probably know the answer to part of my question, in that there are not likely to be many meaningful activities for her. That is why having someone in their home seems preferable, but she still needs something to do. It also doesn't save my dad a lot if he's driving her 1/2 hour each way for a 2 hour stay..

    Bookmark   December 30, 2005 at 11:22PM
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You say that "she needs something to do." Is this because she is restless? If so, it's unlikely that she will be able to concentrate on anything enough to do it. If she is aware of being bored, then perhaps a lot of video tapes would be helpful. Quite a few dementia patients love to watch the old cartoon shows like Tom and Jerry. The colors and movement attract attention and there is no plot or dialogue that they need to follow.

    Bookmark   December 31, 2005 at 9:02AM
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Most daycare facilities have a van that will pick up clients at their homes and drive them back at the end of the day, thus saving your father from the trip. At any rate, I would strongly encourage you to connect with your Council on Aging as they may know of other options that you are not aware of.

    Bookmark   December 31, 2005 at 9:41AM
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Will she watch TV? Along with cartoons, she might could be interested in the old Musicals like "Oklahoma" You may find that she will like to see the same ones over and over. There's something about music and movement that catches the dementia patient's interest. She may even like Sesame Street. Give it a try. The object is to find something to hold her attention so that your father can relax for a while. He is your main concern right now. What's best for him is the best for her.

    Bookmark   December 31, 2005 at 10:06AM
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As PB asked, the important question here is if your mom is in need of activities, or is it you think she needs to be kept busy? I went through this just a little over a year ago. I was caring for my mom in my home and had an aide here during the day while I worked. In the beginning, I felt mom needed to be kept busy, to have something to do besides watch TV all day. I slowly learned that mom didn't want to do anything but watch TV; she was content; I needed to learn to accept it. Besides the cartoons, there are DVDs out of The Golden Girls, I Love Lucy, Burns and Allen, Martin and Lewis and I'm sure many more. The ones I mentioned I have bought and my mom loves them. I have a feeling she's not really following the conversations, but when the audience laughs, she laughs. The bottom line...she's entertained, and happy, and that makes me happy. My best wishes to you,

    Bookmark   December 31, 2005 at 10:11AM
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Your dad is going to be a prisoner in his own home, soon. You can see that, even if he can't.

Driving a half an hour to a good adult day care program is not too much, that's how far away most of them are here in the Baltimore area, and there a many, many programs here. Many of them have vans that pick people up and drop them off at home at the end of the day.

You mother probably won't cooperate with an in-home caregiver, she'll be very suspicious and not at all trusting of this person, especially when your dad is at home with her. Your mother won't be interested in doing anything, even watching TV, as you've noted, so don't expect a caregiver to "entertain" her. A good adult day care program for dementia will be able to do a much better job of caring for your mother, and keep her engaged, even for short period of time, and if she just sits, that's OK too, they'll keep an eye on her, and encourage her to participate in activities, as they change throughout the day. As you've seen, having other people around her keeps her interested.

Here's what happened in my family. In 1991, after about 9 years of slowly progressing dementia, it was apparent that a change was necessary. My father couldn't leave mom and couldn't take her anywhere. My sister and I lived close by, but, as most of us do, we have full time jobs. Dad was taken to the ER several times, with mom left home alone, we made a decision. We both couldn't continue to race from work to meet dad at the ER, and take care of mom at home.

My sister and I sat down with Dad and his minister and told Dad that it was time to move, and we would not tolerate any argument from him. The tables had turned, and my sister and I came to understand that we now had to make the decision.

We found a very good Continuing Care Retirement Community (CCRC) near me in Baltimore, with an assisted living and nursing care center as part of the community. In 1992, after much grumbling and lamenting the sale of their home of 40+ years (and a threat that we would duct tape him to a hand truck) they moved. He commented that selling the house was much easier than he thought. My sister and I and our families worked very, very hard to make that move, and all the subsequent moves, "easy" for him.

They lived in their own apartment, independently, my mother lived with him for 3 years, dad lived in the apartment for 10 years, before moving up the levels of care to assisted living and then the nursing home. He was able to get an aide in to stay with her if he needed to go out, and when she was in the nursing home, he could walk over and visit any time he wanted.

He loved living in the retirement community, made wonderful friends, was much more active than he had been when he lived in his own home with mom the last few years. He said he was glad we had insisted they move, and every six months, or so, he would invite friends from the church or old neighborhood up for dinner and a tour of the community. Several moved in!

We told him that we would discuss/decide, with him, when it was time for mom to go to day care, and ultimately, to the nursing home, and, as he aged and declined, we made the same decisions for him. We told him that if any of his old friends questioned him, he could blame my sister and me, telling them that we insisted. It worked. My dad's last 11 years were good, as were my mother's last 4 years. We miss them terribly now, but we know we made the right decisions, and neither of us have any regrets about them.

Good luck.

    Bookmark   December 31, 2005 at 10:14AM
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To clarify my mom's needs, she is well enough to participate socially with people. She looks for things to do, but since she is unable to do much on her own she looks to others for guidance. She can go out to dinner and still hold a reasonable conversation, though she stumbles trying to think of words and such. This is what is most difficult for my dad, because she wants to go walk through the stores, go out to eat or see a movie and he doesn't always have the energy for this. I've told him he's doing more than he should already, which he realizes, and then she gets difficult and pouty when she's bored. She does know dad is ill and tired, but can't reconcile the differences. I was hoping with someone in the house he might be able to get some needed rest while she was with someone else. I do see her getting suspicious when she misplaces things by claiming that it's been "stolen".
This is relatively new and I see it only getting worse. She gets along well with the caregivers she's been having while dad is in the hospital - this amazes me. But they take her to the hospital to visit dad, and stop to wander some stores. Maybe just having a caregiver that takes her out roaming is a temporary answer.

    Bookmark   December 31, 2005 at 11:14AM
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I hope you have concrete plans for your mother's care/placement if something serious happens to your dad. It's best to be well prepared for that eventuality.

Good luck.

    Bookmark   December 31, 2005 at 11:34AM
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Hi there, you have been given some great information here. If you look at the "I feel so uncomforatable" thread you will see the phone #s of agencies that can be of help. And BTW, yes light house keeping, laundry etc. IS part of what a custodial caregiver does, so if you have and aid that is unwilling to do so , find another agency. Your aid should be willing to not only do these chores but make an effort to encourage your Mother to "help". Contact a few other agencies and explain what your concerns are, if she does not need "skilled care" then you are duplicating services, there is no reason to be paying a cleaning lady AND someone to come in and just "sit" with your Mother. In Michigan it is called "chore services" There are aids out there that will do as little as possible, or only what they are directed to do. There are also some WONDERFUL aids out there that will put in as much effort as they can, you need to find one of those.
Good Luck!

    Bookmark   December 31, 2005 at 11:40AM
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Lisa - thanks, I actually read through that whole post last might before I put up my question. And I already printed out your list of agencies to call, hoping to find another few to consider.

What she needs more than anything is a companion for a time. I have been urging my dad to look into long time care - there are no arrangements made yet. I started that when he had the transplant last year and I know he plans to do it, but just hasn't yet for whatever reasons. He wants to find a place down there if she needs to go in while he's alive so that he can see her, but I've explained that once he's gone I'm moving her up here. It would be terrible to try to visit her 60 - 70 miles away on a regular basis. She thinks her friends can come visit, but we all know that it won't happen when she's not really there anymore. I have started to collect names of places nearby and I need to visit them and check on waiting lists. If my dad dies unexpectedly (which could happen anytime) they want her to be able to stay in the house for a few months so that she doesn't have too many changes at once. If that's the case I would insist that we move her closer to me because I'm the only one who would be responsible for her care.

    Bookmark   December 31, 2005 at 12:10PM
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you are correct - she needs a 'companion' not a caregiver. Are there any retired but still active seniors that would welcome the opportunity to have some extra income in exchange for coming in and keeping her 'company'? This might not be a long term solution but perhaps it will work for now. Carolyn

    Bookmark   December 31, 2005 at 4:23PM
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i'm new here,i hope it's ok to chime in. my girlfriend had a similar problem with her parents after her dad had a stroke. he needed a caregiver and they had nurses aids,,eventually one who lived in. when her dad passed,,it became apparent that her mom needed a companion,,not necessarily a caregiver. my friend was able to find a poor college student who is studying nursing and works part time in a nursing home. the student lives there with mom for free,plays cards with her,takes her grocery shopping and keeps the place picked up. both are very happy with the arrangement. i hope you can find a solution that brings you peace of mind. this is hard,isn't it? susan.

    Bookmark   December 31, 2005 at 10:35PM
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Thanks to all who have offered suggestions and comments. This last year has been quite stressful for me as well as them - I hate to sound self-centered, but it does affect me. Especially, when I'm over an hour away and can't help as much as I would like. Realistically, I know that I can't be the one to take care of them, and they do not want me to give up my life and family to do so. Sometimes I wonder about our society, when I see other cultures where the elderly are treasured and cared for by their families. In our world that just wouldn't seem to work. My parents have always said that they would never be dependant on me, and truthfully, I am grateful for that. I have multiple sclerosis which is not debilitating for me, but I don't have the energy that most people do, and my family prefers that I do what is best for me.
I like the idea of finding someone other than a caregiving company, but I can't imagine that they would go for that. Last year when I researched these companies bonding and insurance were very important to them. Another relative has a caregiver 7 hours a day, but she is just an individual. It works fine for them, but my mother has always disliked the idea that she could take advantage of her or steal from her. I wish I could find just the right person as some have mentioned here, like a student. Actually several of her caregivers have been students and she's gotten along well with them. Mom would just never trust someone without "credentials". I hope to call the agencies that Lisa mentioned in the other thread to get some more ideas of how to find the right people.
Thanks so much for your time, I seem to feel just a little better putting this in words. Dad and I only get to talk when he's in the hospital or on the rare occasion that he's alone because my mother suspects we're talking about her...

    Bookmark   January 1, 2006 at 10:26PM
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Deidre, my fathers dementia sounds similar to your mothers, although DaddyÂs has progressed a good bit in the past year. He can no longer live without a full-time caregiver. What youÂre describing with your mom sounds like boredom. One thing that we found with Daddy was that he lost the ability to read long before he told us, and that following the plot of most movies and TV shows was too much for him. Human interaction is much more in the moment, and far less frustrating. Watching the news because much less interesting as he lost his frames of reference. Why are they talking about this Bush guy again? Iraq? Is that in North Carolina? Because itÂs embarrassing, they often wonÂt say anything.

My mother died of colon cancer three years ago. Before her final decline, she had become the brains of the operation. She paid the bills and decided what they were going to do. They went everywhere together. Because DaddyÂs slide into dementia was pretty gradual for a while, I donÂt think either of them realized or acknowledged what was happening. Your parents are adapting admirably to their changing circumstances, but it sounds like itÂs getting to the point that itÂs no longer healthy for them to continue without help. Sometimes trying to hold on to their old life becomes so stressful that itÂs bad for their health. Generally, the time to make the move is just before itÂs absolutely necessary. ItÂs not the kind of thing you want to do in an emergency because it takes time to look at all of the options and decided whatÂs best for your parents.

    Bookmark   January 3, 2006 at 10:52AM
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