10 replies to this topic

[jhamm]

Several years ago..........we're not sure when.........my dad had a stroke. He is 79. He will be 80 in October. My mother is 76. The stroke has affected my dad's left side. He drags his left foot, sort of shuffles along, and his left hand is virtually useless. He has begun to have more and more accidents......In the beginning we were hopeful that he may be a candidate for the shunt operation. We have had to wait a very long time to get in to see the neurologist, and he ordered that a CAT scan be done to check the amount of spinal fluid on his brain. They have seen him a couple of times, but it takes forever to get into see him. My dad has also been waking up at night, turning on all the lights, and at times has walked out the front door. This has been very upsetting for my mother. She has said that she will take care of him as long as she is able. He has tried using a walker, but because his left hand is clenched and swollen, he can only use his right hand. This throws off his balance. He has begun falling more and more and my mother can't help him get up.

Mom found a local support group and has now been able to get some home health people, OT, PT, as well as a nurse that come and work with him a couple of times each week. At first, I was hopeful and I thought we would have seen some progress. I'm afraid to say this to my mom, but I'm beginning to think that this is all too little, too late. She has now put him in Depends at night so she won't be up all night cleaning up after his accidents.

Please help! Any and all suggestions would be welcome. I am very concerned, but I don't know what advice I can offer to her. I do know that she won't be able to care for him much longer. It is really taking a toll on her. I am now concerned for her health.

Thanks!

[jriva]

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Hello,

I can't be a lot of help but one thing I can suggest is that you talk to the physical therapist about whether of not your dad could learn how to use a pyramid cane. It's like sort of like a walker only it's used with one hand and not to be confused with a four legged cane.

I'm sorry to say it, but some of the things you're describing sound dementia related---the getting up in the middle of the night, turning on all the lights and walking outside. The problems with thr urination accidents could be stroke or dementia related. Hard to say. I guess all you can do is press for a thorough evaluation and see how he does with home health care.

I wish you all the luck in the world. It's really hard to watch a parent go down hill like this.

Jean

[jhamm]

Thanks for your suggestion about the pyramid cane. I've never heard of that. Can you give me any more information on it?

My mother has said that he does have some form of dementia. I know that the neurologist has given him two kinds of medication to try to help his condition....at least try to slow it down. I don't know what kind. It is really worrisome to me that he is falling so much. I think it may not be much longer before he will have to be in a wheelchair.

My mother is holding up......but it's breaking her heart to see him like this. She cries constantly in private. She will not let him see.... She says it is so sad. .... I can't imagine how I would be coping if something like this happened to my husband. It would be like my world crumbling around me.

I try to be supportive............but I don't know what I can do to help.

[fking]

Jhamm,
I welcome you to the site, there is plenty of information to help you along posted in the various Forums. Some reading and sorting out what you got questions on will give you a head start for sure in thinking of what way you may want to go.

The cane/walker Jean mentioned is called a Hemi-walker or cane. It folds up and looks like a step stool without the steps. It's used with one hand only. The 4 legged one is a quad cane, I use it now, it helps me hold the doors open and it stands alone. The regular single point cane always fall when I try to lean it against me or a wall when I'm using my right hand for something else.

The hemi-walker is what I used for my first 5 months, 3 in the hospital and rehab. Came home in a wheel chair not walking well. Two years later, I'm driving again at 65 years of age.

Hope this helps some and thanks for being a member.

[jriva]

I try to be supportive............but I don't know what I can do to help.

Jhamm,

I share-cared my dad for five years when he had dementia and there a lots of ways you can be supportive of your mom. One of the best things you can do is give your mom regular weekly breaks that she can depend on by taking care of your dad for a few hours while she does something away from the house. You could use that time to put up pills, help with house work or laundry...all those things that take up time. They get harder and harder to keep up with when you have to constantly keep an eye on someone who is unpredictable. You can also bring a prepared meal or two along to cut down on her cooking. Supporting someone with this physical stuff is also supporting them emotionally, believe me.

Jean

[Katiedid]

Jean is right on with her suggestions, as usual. Practical help is a great source of emotional suppport as well, especially if it is provided regularly and predictably. A meal on the same night each week, or time off for your mother every week so that she can plan to have that time free--those things will give her a break to look forward to.

Are you in a position to offer your dad the possibility of a home health aid for a few hours each day? Is an assisted living facility out of the question?

It sounds to me as if your mother might be depressed. Has she seen a doctor lately?

All the best,

T

[jhamm]

Thanks for your suggestions. Because of his toileting issues, my mother did not want me to be there with my dad. Instead, my brother goes to stay with dad when my mother goes to her support group meetings. I had thought about sending a meal, but she is still cooking for him. She is resistant to accepting too much help right now. For example, I offered for us to bring a meal for them on Mother's day, which she declined. There are OT and PT people that come twice a week now, as well as an aide that comes to help shower and shave him. There is also nurse that comes once a week. As far as the housework goes, I have also offered to do that. She has declined. She is still in control of her household, so when she says no, I usually don't press it.

[hostsue]

I'm probably a lot like your Mum, independent, stubborn, over-worked, crying in the shower. So my family don't ask me, they tell me. Our son provided us with a lovely meal yesterday. He said:"I am cooking pork because I know Dad likes that, if you want anything different for yourself can you let us know. Lunch will be ready at 1pm"

Sometimes when I am stressed I get even more difficult. I want to be able to do it all myself but I know I can't. Your Mum probably needs you to sit down with her for a while. In the course of the conversation bring in ways you might help. Show her you have thought about it. She may not know exactly what she needs in the way of help so ask her to think about it and get back to you. I know I can sometimes shut people out with my independence while crying inside for the help I need.

It is not easy to lose control of parts of your life that you thought would always be yours, like being the woman who cooked for everyone else on the special holidays. Allowing you to help may be part of that for your Mum. See if you can word it in such a way that she can give you a "yes" or "no" answer like:"Is it difficult for you to think of me as helping you?" and "Can you think of an way my helping you could make life easier for you? What do you think I should be able to do?"

Sometimes it is hard to break down the barriers so just keep on gently and see what happens.

Sue.

[arogers]

Good Morning Jhamm,

I am relatively "young". I will be 57 in June, and I am my husband's (he's the same age) caregiver. When I was 51 my dad was diagnosed with a terminal illness. Since my mom was 81 and not real well, I took a leave from my position - eventually resigning it - in order to care for them. Mom allowed me to move in for a month, and then she wanted to take over - and did so for the next 5 months of my dad's life. I helped them with trips to the doctor, doing some cooking and running errands. The house could have fallen down around them, and her pride wouldn't have allowed for my cleaning. (During a couple of hospitalizations I did sneak out and do some cleaning for her, though.)

My husband suffers from vascular dementia as a result of his strokes. Night time is worse. It has been suggested in reading I've done to keep a light on, since for some reason the confusion increases when one wakes up in the dark. This may be a reason your dad turns on the lights. This winter the dementia was more severe than it is now. The one thing I could have used more than anything else was someone to come into the house and stay the night so I could sleep through. Bill was in a nursing home the month of February and I could sleep - and boy did I! Even one or two nights a week of someone else being "on watch" would have been wonderful.

Your mom probably is not going to ask for help, and she will decline your offers. You will need to take action and insist you want to help and now it's your turn to do so. Our parents are always our parents, and they don't like to think they need our help - ever! I can understand her sensitivity regarding your dad's personal needs, however, he is probably going to continue to need more assistance. You will probably need to talk to your mom and gently let her know that he will always be Dad to you, but now he needs all of your help in caring for his needs.

I can tell you, we women have a difficult time asking for help. It's much easier for us when someone comes forward with a plan. Your mom is making so many decisions now that for her making one more decision about when she wants you to help is probably just not possible.

Best wishes to you all,

[jhamm]

Thanks so much for your suggestions. They are greatly appreciated.

When I try to talk to mom about things, she always changes the subject, and wants me to visit with my dad. I know she needs to talk things out, but when she always wants me to focus on him, it is really difficult to get her to talk about anything else. For example, I suggested to her that my brother and I bring food over for Mother's Day, so she could relax and not have to worry about cooking. She told me no, that she wanted us to stay home with our own families on Mother's Day. My brother and daughter even tried to persuade her to allow us to provide a meal on Mother's Day. She told both of them no. So, later on that day, I brought her gift and visited with them both for a while.

She says that family is the best medicine for Dad. I have tried to talk to him, about different things. I will be in the middle of telling him something and he will ask me something completely off the wall. I always try to be patient, and no matter how many times he tells or asks me something, I always respond to him. It is difficult to carry on a conversation with him. After we talk for a few minutes, mom will begin telling me things about Dad and give me sort of a "progress report." This is all fine and good, but she still doesn't talk about herself and how she is coping.

Should I become more assertive? This is all new territory for all of us. I have had the role of daughter for so long, it is difficult to think of taking the reins of control away from her.

[fking]

Jhamm,

Look around the board, I think in the Classic Posting Forum, you will see some topics dealing with situations such as yours. That will give you a head start on the best way to approach the problem.

You may want to PM Jriva, the board administrator, for help in finding the topic you could read to gather ideas that has been discussed. Hope this helps, then you will kinda know what you should do in your case.