Alzheimer's Community

I'm really sorry your mom's condition has deteriorated to this point.

I don't know anything about what incontinence pants might fit best, I'm afraid. Maybe you could google something like "incontinence pants reviews" and see if that helps.

I did find something that might be good to use on your mom's bed. It's a waterproof pad that goes on top of the bottom sheet, but it's washable and reusable, rather than disposable, so it might feel more like a real sheet. The web site is mainly for children, but it looks like there are products there for adults, too, including incontinence briefs.

I don't know much about hospital beds, either, but I know you can rent them from medical supply stores. If your doctor says a hospital bed is medically necessary, Medicare or insurance may pay for it. The people at the store can probably give you some helpful guidance about what features are best for your mom.

It really sounds like you're at the point where you need to get someone to come in and help you, especially if you are having to lift her. You shouldn't be trying to lift her yourself. Your mother's doctor or your local Alzheimer's Association should be able to point you in the right direction. It could be that you can manage for now with just a home health aide for a couple of hours in the morning and again at night. Again, I think that insurance may pay for it if your doctor recommends it, but I'm not sure.

I hope you'll stay in touch and let us know how your mom is doing, and I hope you can get the help you need. Don't try to take on too much yourself.

Take care.

Carol

Dear 7 Grands,

I would like to share with you how I've made the bed wetting problem easier.

First I bought a special waterproof mattress pad for my mattress. Then I bought a waterproof pad that is wide enough to fit across my Queen bed. I bought 2 of them, so I always have a clean one ready. They are as comfortable as the sheet. Being so wide, they don't curl up when he moves.
Then I bought Depends for my husband.
I stay up late and when I get ready to go to bed, I wake him so he can go to the bathroom. That usually does the trick.

I used to change the bed most every morning. He always felt so bad when he wet the bed and made more work for me. I thought to myself, 'that's okay, no big deal'. But then I found that when I looked at his side of the bed and it was dry, I was really relieved, but when it was wet, it really depressed me. After a while, I had to work up the courage to talk to him about Depends. "A piece of cake!" He thought it was a good idea to try.

You could probably find this washable bed pads at the medical supply house or Walgreens. You can check on-line for medical needs. Also, ask about the lifts! I think they can help you. I can relate to you a little bit. Sometimes when I wake my husband in the night to go to the bathroom, he is confused and has trouble getting out of bed. I have to help him up at times. I have the support of a bed rail, but I know I'm really limited. I hope this helps.

God Bless You and Your Mother,

Kathy

Thank you, Carol and Kathy. Mom has an appointment on Monday, so I'll talk to the doctor at that time about what helps are available for me at this stage. The disposable pad under the fitted sheet minimizes how much laundry I'm doing. I'm considering waking her up before I go to bed, too. I really appreciate your help - thanks!

Hi 7grands

I hope you discuss gertting a hospital bed with the doctor. Medicare covers the cost for one that is semi-electric; a full electric means that you would not have to crank up the bed to be overall higher or lower. To get that one, there is a small additional fee.

Definitely get some help for yourself - it will make all the difference.

Perhaps you should also discuss the possibiltiy of hospice to help you out since you feel your Mom is entering level 7.

As for the incontinence, make sure she has nothing to drink after 6 or 7pm, and no caffeinated beverages after 2 pm.

Taking her to the bathroom before bedtime is a good idea, as well as sny time you might wake up during the night.

Keep hanging in - you are doing a great job,
Judy

Hi 7grands. How did your mom's appointment go on Monday?

Carol

Mom's appointment was ... well, somewhat amazing. She slept for 13 hours the night before. For her morning appointment she rallied. She walked like I haven't seen her walk in a couple of months. The doctor thought she was doing quite well. I explained that this was a very unusual day. She has ordered a light-weight wheelchair for mom to use when we go out together. I didn't see your post in time about the hospital bed and getting hospice. I thought hospice can only help if she has about 6 months to live. I don't think mom is on death's doorstep. Mom has definitely all of the symptoms of stage 6, but is just beginning to enter 7, I think (but this is all new to me). The doctor is adjusting her meds again to see if they could be affecting her walking and balance. So far, so good. No change of behavior (which has been a problem in the past), but it isn't affecting her mobility either. I'll keep you posted. Thanks again for your concern and encouragement.

Isn't it amazing that some days are just better than others? So glad your Mom had a good day, and that you were with her.

Still consider getting some help - it will make a big difference for you.

k\Keep us posted,
Judy

Hi 7grands.

You must have been so thrilled to see your mom doing that much better. Your post is from five days ago, and I really hope she's still doing well.

How is she doing with her wheelchair?

I hope you'll continue to let us know how both of you are doing.

Carol

Thank you, Carol. Mom did well that day until later in the afternoon. Since then, she is back to being rather frail. The only thing I can think is that she slept so much better that night than she normally does. Because of her incontinence, she is up two or three times each night wet and barely able to get her legs in motion. We have not actually used the wheelchair this week, but plan to when we go out shopping, etc. Mom's lab work showed that she is borderline dehydrated. Most of her drinking is done before 4 p.m., but still she has accidents each night. I tried waking her up at 11 p.m. last night to go to the bathroom, but she was already wet and again by 1 a.m. and again at 5 a.m. The interrupted sleep is hard on her body. I do believe it makes her much weaker. I would welcome any suggestions. She doesn't have caffeinated drinks much - just 2 cups of coffee - one in the morning and one mid-afternoon. In between she drinks water, juice, milk or milkshake but not much of any of them. She doesn't have chocolate either. Well, I'll wait for more suggestions and just keep keeping on:) Thanks!

Hi 7grands. It's really hard when you see a dramatic improvement and then it turns out to be so brief. You get your hopes up, and then they just get dashed.

When your mom had her lab work, was she checked for a urinary tract infection?

I know it doesn't seem like it would make that much difference, but maybe you could try giving her decaf instead of regular coffee, and see if that helps. I don't know if you read the post where Shelley talked about what a huge effect even a little caffeine was having on Ron.

I'm trying to think of a good way to get her to drink more of what she is drinking, but I'm drawing a blank. Maybe someone else will have a good idea.

Does she like fruit? That's a good way to add some hydration -- bananas probably don't do much, but things like berries, peaches, melons, pineapple, grapes, oranges, etc. should be good.

What about soup?

I hope someone else will have some more ideas. I know that it's really frustrating for both of you to have to get up several times during the night.

Carol

Thank you, Carol. We've been doing soups and fruits, but I will try the decaf coffee to see if it makes a difference. I talked to her doctor this last week. To my surprise, she told me that mom is now eligible for hospice care. I really felt surprised to hear that. I know she is losing strength quickly in the past 3-6 months, but I didn't think we were at that point. Mom is not bed-bound, but up every day. She eats well, but doesn't want to drink much. She takes very little medication and is in no pain. Those of you who are familiar with hospice, can you tell me how we would benefit from having them come at this point? I guess I didn't expect to have them come until mom was bedridden. Is it ok not to have them come, or am I being foolish or naive?

Hi 7grands.

I'm sorry to hear that your mom's doctor thinks it's time for hospice care.

My uncle had Alzheimer's, and it sounds like he was a lot like your mother when his doctor and case manager recommended hospice -- he was up and dressed every day, went out for lunch every day, ate well, but didn't always drink enough. To us, it seemed like he was gradually weakening, but it didn't seem alarming at all. I remember the case manager telling us that his body was slowly preparing to give up. It was hard for us to believe, but it turned out that she was right. He never was bedridden until he was admitted to the hospital the day before he died. My aunt didn't bring in hospice until a few weeks before that, and they were such a great help to her. They were only there for an hour or two a day, but they checked him out every day, got him medical attention when he developed pneumonia, oversaw his medications, helped with bathing, and did anything else that needed to be done. My uncle insisted that he didn't want anyone but my aunt taking care of him, but he grew to really look forward to visits from the hospice nurses.

It's completely up to you whether to have the hospice nurses come, but I can tell you from experiences with my friends and relatives that they are a real godsend. They will coordinate all of her care, medications, any needed medical equipment, etc., and their goal is to make the patient as happy and comfortable as possible, and to ease the burden on the family. One woman who used to post here said that hospice even arranged to get her five-acre lot mowed when her husband became to ill to do it. Hospice can be a great support in every way -- practically, physically and emotionally.

There is one regular poster here whose experience with hospice care wasn't a good one, but that's the only negative I've ever heard.

It might be worth trying. You can stop it at any time if you don't feel it's helping, or you aren't happy with it.

I really am sorry that the doctor's recommendation took you by surprise. You must be reeling from that.

Thank you for the update. I hope you'll continue to keep us posted.

You're in my thoughts.

Carol

Just wanted to add this -- I said that the hospice nurses were only there for an hour or two a day. If my aunt needed to go to appointments, run errands, or just get a break, they always sent someone to stay with my uncle for as long as necessary. That relieved a great deal of my aunt's stress.

Carol