Oh this horrible roller coaster called Alzheimer's.

Spoke to the ALF this morning. My mother is now officially incontinent. She was not before being transferred to the dementia wing of the hospital. In that wing, all patients are put in diapers. For the past four weeks or so (I can't remember now), she was in diapers, even though she was NOT incontinent. Now she is. Could the diapers have made her that way? Can it be reversed? The ALF has her in pull ups so if it does reverse, the pull ups are like underwear so she hopefully won't realize they are actually diapers.

Plus she is giving the ALF a very hard time today.

I am not staying away for a few days to a week like I originally planned. I am going there tomorrow. Good thing I'm off from work this week. Damn I wish I lived closer to the place.

I had my fifteen minutes of happiness. They are gone now.

It may be that while in hospital she forgot how to go because she didn't have to, but that seems unlikely to me, given how "going" is so ingrained from childhood. It's more likely that she may have lost her ability. Maybe not. If the staff encourages her she might start again. My mom did that. She just seemed to lose the ability very quickly, like she forgot, which she probably did.

Thanks Lammie. It still shocks me each time my mother loses another ability. I seem to be in such denial over this whole thing. I just can't seem to comprehend that just one year ago she was still living alone and taking care of herself (of course with me making daily visits to help out). One year ago she was happy, still going out, could still make sense most of the time, etc... Now she's in diapers!

Marj, I KNOW how you struggle with the changes. But I have to agree with Lammie. I don't think the toileting was taken away from her brain by anything that was done. It's the disease. And, as is true with the roller coaster, maybe that ability will come back to her and maybe it won't. Follow your instincts with visitng - true instincts - not the heart's desire. Those two things are often at war with one another. Mom does better with frequent visits from us. One of her fellow residents stays more settled when her family only comes on weekends. I've seen it with my own eyes. If they come during the week, it is very upsetting to their mom.

There is just no freaking easy way through this. We are here with you and for you.

Instinct, heart, ARGHHHH! I wish I had a crystal ball so I could see if my visit will upset her, confuse her, make her miserable, make her happy, etc... My gut says to go visit her tomorrow, but that could just be the nausea speaking. I know she will beg me to take her home (not that she knows where that is anymore) or take out her frustration on me. I am prepared for that. I actually hope for that. If she acts that way then I know there is still some of her left in there. Maybe I should wait a few days. I seriously have no idea what to do.

My mother can feel when she has to go to the bathroom but since her stroke she cannot get there without help from two staff. She has many accidents. Sometimes she expresses how upset it makes her to need this help. Other times it barely registers. She wears diapers.

She often confuses the nursing home where she lives as her home, her hotel, or who knows what. She often says things like "the food here at this hotel is pretty good" or "the TV is too high on the wall at this hotel". She almost always thinks there are family members in the next rooms. Sometimes she demands to be pushed in her wheelchair into the other rooms so she can see who is there. This is becoming a serious issue.

I share your frustration, I want her to be her old feisty self but she just isn't. Sometimes there are moments of clarity. Last night she called me by her sister's name but then corrected herself and said my name. We say "I love you" now regularly, something we never did before she got sick. So, hold on to the moments you can and try to let other things roll off your back.

I don't think you'll ever regret having visited too much. But you have to take care of yourself too... I feel like I am in the proverbial rock/hard place all the time. I often feel like I can't do the right thing and can't even figure out what that could be...

Try to give yourself a break. It's probably the best thing any of us can do right now.

All may not be lost yet. Only time will tell.

My mom's dementia became extremely evident and was diagnosed after she fell and broke her shoulder.

Very quickly, she was a mess in every possible way. Among other issues, she experienced bowel incontinence and did not realize that she was extensively soiling herself and her clothes.

However, once we moved her to dementia-care ALF so that she was in a structured, non-chaotic environment, got her meds straight, and her body had a chance to recover from the traumatic of the fracture, she became continent again.

She's been OK (incontinence-wise) for more than a year since then - the only problem was when she was taking antibiotics, had diarrhea, just couldn't get to the bathroom fast enough.

I do think that putting hospitalized dementia patients who are not incontinent in diapers and treating them as if they ARE incontinent (i.e., not making it a point to help get them to the bathroom, etc.) is indeed a good way to MAKE them incontinent.

Think about it. They're in an unfamiliar place. They don't know where the bathroom is (even if it's attached to their room). No one proactively takes them to the bathroom. Of course they become incontinent overnight. How could they not?

Sure, someone showed them the bathroom when they arrive, and perhaps mentions it again off and on - but our ADLOs don't learn new stuff quickly. And I have yet to a see a bathroom in a hospital with the words "BATHROOM" in huge letters and a big picture of a toilet on it - even though that would be very helpful for some dementia patients.

My mom still has to stop and think about where the bathroom in her group home is, and she's lived there six months! And it's a typical home setting - much less confusing and chaotic than a hospital! I'm sure she would be instantly incontinent in a hospital, simply out of confusion.

Frankly I think it would be pretty amazing if your mom weren't incontinent after this hospital stay.

Good dementia-care ALFs keep residents on a toileting schedule, meaning that if residents have trouble self-toileting, they approach them every couple of hours, take them by the hand, and walk them to the bathroom.

I think you have to approach this as a retraining process with your mom. Make sure they put her on a toileting schedule so she can start learning where the bathroom is, etc. and she may well start "remembering" to go to the bathroom.

Mother spend 2 and half weeks in a facility and returned home not walking and wearing depends. She "will not" walk and I feel it was facilities fault as she is such a fall risk that they have a person with her at all times making sure she did not try to get out of chair. Try not to be too upset by this but wish there had been another way to keep her safe. She will use the depends as she won't help us to get her up to bedside. Will not have BM in depends and has been a constant fight to get that process going. She has to be placed on bedside and will use but it is painful due to osteoporosis and compression fracture. She has been home 3 weeks now and is better in some respects but has not ever tried to walk or anything. Talks a lot about she is going to bathroom but say yes then when we go to help it become no very loudly. Have tried placing in geriatric chair and she does not like being ther either. I can't stand to see her in the bed all the time. She does not like TV. I think she just thinks of things all the time. Sometimes very lucid and then she will be in "the outerlimits" I cry with her and for her but will continue to make her as comfortable as she can be. Well I vented I suppose but in answer Mother had not gone back to being continent or walking since release.

I am so sorry to hear this marj..I think grassflower makes alot of sense on this one..try not to see this as "final" it may reverse...i know its hard that as soon as we overcome one hurdle.UH-OH here comes another one and we are never quite ready for it...hang in there friend...i always say go with your gut and if your gut is telling you to go tomorrow to see her then go..having said that as an outsider looking in I would give her a little more adjusting time...you say she will want you to take her home...of course she will SO don't put her or yourself thru that so soon...she needs to adjust to the new faces, new voices..I know it is hard to stay away and give control to the ALF but remember they are well trained and do this all the time.

Keep us posted..we are with ya!
kim

My sister is there right now. She is going to let me know if she thinks I should go tomorrow or not. I'm studying for a major final I have on Friday and going to visit tomorrow takes a good six hours out of my day. I know it sounds selfish. If I know it will do her good, I will most certainly go. I can't concentrate on anything right now, this disease just sucks. My sister should be finished with her visit in about half an hour. I'm on pins and needles.

Marj, you have to take care of yourself as well. Your mom is still in the adjustment stage.

If it were me, I would stay home and study, then try to see her over the weekend.

Be gentle with yourself.

I was just told by my sister NOT to go tomorrow. My mother is freaking out there and seeing my sister seemed to make it worse. I will go on Saturday hopefully, in the morning. I know for a fact that my mother sundowns and early in the morning is definitely a better time for her. My aunt and uncle are coming into town next week, this is my mother's brother and sister in law. I know they would like to go see her, but I have to prep them. They live in Oregon, we are across the country. They haven't seen her since she deteriorated so much.

On a positive note, she did go to the bathroom on her own.

I will spend tomorrow studying. I will try to calm down. Even my own doctor told me I need to relax, go to therapy to try to deal with the stress. If I only had the time.

I will rent a car for Saturday morning and hopefully not get lost. Driving takes so much less time, only a little over an hour each way, provided I don't hit traffic and/or get lost.

Marjk, with everything I've read in your posts, you're hardly a selfish person. Now, if it were me, and I visited my mother knowing that I had a major final and could be using that time to study so I could get a 99.9 because it's important(I'm serious), I'd let it interfere with the quality time of my visit. I'd be distracted, my foot would be tapping, etc., and my mom, God bless her, would pick up on it and react in some way, maybe not a good one. My mother's radar is still pretty good. Then, instead of putting the blame where it belongs (my mother picking up on my distraction), I would be looking for other causes.

Good luck on your final, and whatever your decision is, run with it.

Since mom's hospital stay in July, her incontinence definitely got worse and remained so. Now, that she's been back at the NH for a while, the attention they're able to give her has helped enormously in that regard. Although she still has accidents, she's much better than she was. Hope the same for your mother.

Is it possible that after being in the hospital with diapers on for that long she has developed a yet undetectable UTI? That would cause some incontinence for sure. Ask to have her checked for that. If she was soiled frequently and not cleaned properly, it is possible.

She was checked regularly in the hospital for UTI's. She was checked as recently as Monday. She's going in the bathroom, I think she needed a little time. She might be a little incontinent throughout the night, time will tell.

Oh boy do I need to study for this final. It's neuroanatomy. I'm not doing well in this class. I don't think I ever did this poorly in a class before. This is doctoral level, it's embarrassing.

I must say though that due to this class I have a greater understanding of what happens to the brain in dementia patients.

My husband is between stage 4 & 5. He is incontinent, but its very hard to accept the fact that he is. This is the reason.
During the day I remind him every 1 1/2 to 2 hrs to go to the bathroom. He goes on his own without supervision. But get this, during the night he goes on his own. This is around twice a night.
How soon do they start in being incontenent?
He has had problems with UTI but is doing quite well now.
He takes his shower on his own with little supervision, he waters the grass/plants, etc. He also sweeps patio. He knows all his grandchildren and children by name. He also dresses himself. There's quite a bit of things that he does on his own. We take him everywhere with us.
He does not wonder at home yet, but when I take him shopping or to his doctors appointments and I have to go to the restroom, even though I tell him stay right here, do not move, I let him know I will be right out, that does't work any more, he is gone, but in same area. Once he was just looking out the window.
He is very forgetful.
They have done many test including Colonoscopy, MRI, IBM, etc. Everything fine.
So can someone convince me that his incontinent is part of it is Alzheimers.

Marj,,,when you go to visit your Mom,,,take her to the bathroom,,and refer to her pull up Depends,,as he underwear.

Also,,,speak to the staff about them encouraging and taking your Mom to the bathroom before and or after meals,,and definately at bedtime.

It could be that thru all the confusion of being placed into a new facility or unit,,that she is confused,,and yes,unfortunately regressing a bit more. But tender gentle reminders may help.

Take some deep breath's,,,you'll get thru this too,,like you have all along. Keeping you in my thoughts and prayers. Peace

I'm sorry I haven't updated. It appears that her incontinence issues appear to be getting better, at least during the day. She will go to the bathroom on her own (yay) without having to be reminded. She is also not afraid of the bathroom, the way she was while in the hospital. She is still having issues in the middle of the night. That I can accept. She still wears pull ups, which she thinks is underwear.

My mother will absolutely not bathe on her own, but that was an issue before we had to place her. She fights tooth and nail about showers. I hate to actually admit this, but the home is doing a much better job at keeping her clean and bathed than I was doing.

my mother-in-law will go into the bathroom for about a half hour without even going on the toilet...she just looks out the window...if i send her in there to try to go, i must make sure she pulls pants down, check her pull-up, and tell her to flush when she is done...she just cannot remember what she goes in there for......i really hate this disease!!!