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Medical Forum / Diseases and Disorders / Alzheimer's / October 2006Can't find solution - urinary leakage
My mother is 95, late middle-stage Alz. For 6 years, she has had some urinary leakage - not a lot but enough to cause a definite odor. She doesn't wear underwear, doesn't ever put her clothes in the dirty laundry and doesn't always take a shower. I have to sneak into her assisted living place when she is at meals to take out the smelly slacks and skirts and wash them by hand with a scrub brush to get the urine out. She goes absolutely ballistic when I beg her to wear pads, swears at me and kicks me out. Even her best friend has given her pads as a hint. I foresee the time when the staff will physically have to force her to wear pads and I would hate it to come to that, but I don't see any solution to this problem. Has anyone else had to deal with this? Many thanks!! Christina it would be easier if she was in the habit of wearing underwear.... we just substituted pull up style depends for underwear and it was a relatively easy transition .... all I can suggest is to keep trying ....the only ~good~ thing about Az is that nothing lasts forever.... as she gets less able to articulate her desires, or to resist effectively, you'll likely have more success. How long will she be able to remain in assisted living? It sounds like perhaps she is already needing more help than they're set up to give > My mother is 95, late middle-stage Alz. For 6 years, she has had some > urinary leakage - not a lot but enough to cause a definite odor. She [quoted text clipped - 9 lines] > this? Many thanks!! > Christina >> My mother is 95, late middle-stage Alz. For 6 years, she has had some >> urinary leakage - not a lot but enough to cause a definite odor. She [quoted text clipped - 9 lines] >> this? Many thanks!! >> Christina It was the same thing with my mother in law. It finally came to a point where we had to insist she take a bath (with a huge argument) and also got her to wear depends. It was just a necessity at that point.  SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') They know I'm a nurse and am there every day, so most of the staff doesn't much for her. I do almost everything for her except give her her meds. I am thinking also that as her mind goes, she may be easier to get to wear something. She has always been very strong-willed and stubborn - my father spoiled her terribly. Her little villa has a general odor of urine now from the carpeting, upholstered chairs, etc., and it is frustrating to have a problem which can so easily be fixed and isn't. She says if she can't smell anything, she isn't going to do anything about it. > They know I'm a nurse and am there every day, so most of the staff > doesn't much for her. I do almost everything for her except give her [quoted text clipped - 5 lines] > and isn't. She says if she can't smell anything, she isn't going to do > anything about it. My mother in laws dog peed all over a small throw rug in her bathroom. It absolutely reeked to high heaven. I told her it needed to be tossed into the washing machine. She looked at me as if I were talking to the wall. This was of course, before we knew she had alzheimers. The next time we visited it was worse yet. She had never washed it and didn't smell a thing wrong, though the entire house smelled horrible. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') I know what it smells like, Evelyn! Her whole place has an odor. I can air it out but it never really goes away. I know there isn't a solution to this - maybe I just needed to "vent". The books on Alz. all say if there is leakage to have them wear....etc., but what if they not only refuse but throw you out if you bring it up?? Christina > I know what it smells like, Evelyn! Her whole place has an odor. I > can air it out but it never really goes away. I know there isn't a > solution to this - maybe I just needed to "vent". The books on Alz. > all say if there is leakage to have them wear....etc., but what if they > not only refuse but throw you out if you bring it up?? > Christina My mother in law owned her own home, and was to all practical purposes, independent. The urinary thing was no big deal to her view, for some odd reason.... and the odd reason was that she was developing alzheimers disease. It sounds to me, like you are in the worst position anyone can be in where alzheimers is concerned.... and that is with a loved one who is partially independent, and not showing enough deficiencies to require real intervention. All you can really do is wait for it to get bad enough to require some kind of intervention. Do you have proper legal paperwork in place? Health care proxy? POA? all of that? Among those there may be something which allows you to take action if there is anything dangerous or unhealthful in her life. Is living with pee everywhere unhealthy? I would say so, but I am not sure if anyone else would be ready to take away her independence because of it. In my opinion you need to talk to anyone you can about it. Her doctor, being the best place to start. She may listen more to him than to you. I hope it doesn't come to some sort of a showdown, but sometimes you might be better off just living with the situation for a while and take a wait and see attitude, until something allows you to take further action. That is what we had to do. Once we were in control of the situation, we took good care of her, and she was kept clean, happy, and well fed. But as long as she has legal control of her own circumstances, she can probably get away with living any way she wants. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Thanks for your concern, Evelyn! Yes, I have POA and have been managing her affairs for 6 years, along with her trust officers. I have talked to her dr., to the staff at the assisted living and the nurses there, but I think you are right that I just have to wait it out till she is worse and more manageable. Living with urine around won't hurt her but it is unpleasant to visit with her and always be smelling it. They shampoo her carpets frequently but it can't totally get rid of it. What I have seen taking care of Alz. patients that usually they become more of what they were in terms of personality, and my mother is certainly doing that. I won't win so I ought to just give in, but it annoys me that the problem is so simple to fix and she won't. Christina > ... I foresee the time when the staff will physically have to > force her to wear pads and I would hate it to come to that ... Having the staff force her to do it might not be as bad a solution as it sounds. It's something you might want to discuss with the director of the facility. He or she might have faced this problem many times and have the right staff person with the right experience and skills to do this with more success and less friction than you have met in your efforts. We think of ourselves as better able to deal with our own parents than strangers can be, but it's not really always true. I have found the better staff people at Alzheimer's residences have done things dozens or hundreds of times that I'm trying to do for the first time. Also, they are able to approach the problem more objectively, and with less personal guilt and baggage than I have. And they can be present every day to keep things moving in the right direction. Oftentimes the staff are perfectly willing to play the "bad" guy if that's what it takes to solve a serious problem in the interest of the patient - or, as in this case, in the interest of everyone involved. Alan > ... > We think of ourselves as better able to deal with our own > parents than strangers can be, but it's not really always > true. I have found the better staff people at Alzheimer's > residences have done things dozens or hundreds of times > that I'm trying to do for the first time. ... Of course this applies more to me than to you since, as a nurse, you have vastly more experience with this sort of thing than I do. Still, even if you are very good at doing this kind of thing with strangers, it can be much harder when it's your own parent. I'd at least discuss it with the staff. Alan >> ... >> We think of ourselves as better able to deal with our own [quoted text clipped - 12 lines] > > Alan Again I agree. It has nothing whatsoever to do with her professional capabilities as a nurse. She is dealing with a parent, who has always seen herself as the older or superior one in the relationship. Her mother may be much more inclined to listen to an objective stranger than to take 'orders' from her daughter, as she might see it. I am sure this is something they have seen before and dealt with before. After all, just here on this newsgroup, we have in our collective experience, seen it many times. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') You're very right, Alan. It is sometimes better for someone else to be the "bad guy". I've done that a few times - once when the decision to move her to assisted living was made and once when she hadn't bathed for a week. In the latter case, I asked one of the aides to do something about it. She did and nearly had a mirror cracked over her head! The place doesn't allow tipping but I felt she deserved a reward for that!!! I haven't asked them to do anything about this yet because they aren't so aware of it. I have to keep washing her clothes at home so they don't smell, so they just don't know what a problem it is. And I could just stop washing them but that wouldn't be very daughterly, even if it brought the problem to the attention of the staff. I do think I'll have to wait until her mind deteriorates some and hope she will be more amenable then - of course she might be even less so!! What a terrible disease it is, isn't it? Christina > You're very right, Alan. It is sometimes better for someone else to be > the "bad guy". I've done that a few times - once when the decision to [quoted text clipped - 15 lines] > > Christina Christina, I don't think it isn't daughterly to stop washing her clothing at home. If she needs to bathe, even clean clothing won't hide that fact. She herself would probably be a lot more comfortable if she were clean. My mother in law was a lot happier once we got her used to the idea of regular bathing again. We managed to catch her in the morning before she got dressed or in the evening before bedtime when she was undressing anyway. She was more accepting then. Also I made it a nice experience for her, helping her all through the process. If you look back through old postings to this group about bathing you may find a lot of good tips that I and others have posted in the past. It is a known fact that people with alzheimers manage to get very confused about actions that require some planning and sequential actions. It appears very complicated to them, hence they just don't want to do it. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > I haven't asked them to do anything about this yet because they aren't > so aware of it. I have to keep washing her clothes at home so they > don't smell, so they just don't know what a problem it is. And I could > just stop washing them but that wouldn't be very daughterly, even if it > brought the problem to the attention of the staff. My advice is for YOU to stop doing the work that the assisted living place is PAID TO DO, and start insisting that THEY do their job! You need to understand that you are in charge now, not her, and that you shouldn't be doing their job for them. Just let the smell build up and then insist that they take care of it! And please, don't feel guilty about NOT doing your mother's laundry at home. There is no need for you to do that. >> ... I foresee the time when the staff will physically have to >> force her to wear pads and I would hate it to come to that ... [quoted text clipped - 22 lines] > > Alan Yes, exactly. I thought that nobody could possibly take care of my mother in law the way that we did, and that language concerns and dealing with strangers would be difficult for her. It turned out that my fears were completely unfounded, and they managed with her very well, and she was happy and comfortable there. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > My mother is 95, late middle-stage Alz. For 6 years, she has had some > urinary leakage - not a lot but enough to cause a definite odor. She [quoted text clipped - 9 lines] > this? Many thanks!! > Christina Consult with facility staff about your mother's problem and get everyone on board and coordinated. Then take a short break from helping with your mom's clothes or from visiting. Then during your absence have staff mention the smell ongoing problem directly to her and have them insist your mother wear Depends. The first few weeks might be difficult, but if she receives reinforcement that the urine smell problem is improving, then she might be more amenable to wearing the Depends. I can't believe that they are not already acutely aware of the problem. good luck. AW >> My mother is 95, late middle-stage Alz. For 6 years, she has had some >> urinary leakage - not a lot but enough to cause a definite odor. She [quoted text clipped - 18 lines] > she might be more amenable to wearing the Depends. I can't believe that > they are not already acutely aware of the problem. good luck. AW Good advice. It is possible that because they know that Christina is a nurse, and that she does her mothers laundry etc. that they back down and just let it be as it is. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Christina, you've had good advice from August and Evelyn. Take yourself off for a while and let the folks there deal with it. You need a rest anyway. Gwen >>> My mother is 95, late middle-stage Alz. For 6 years, she has had some >>> urinary leakage - not a lot but enough to cause a definite odor. She [quoted text clipped - 22 lines] > nurse, and that she does her mothers laundry etc. that they back down and > just let it be as it is. Thanks, everybody! I talked to one of the nurses today and will be talking to the head of the assisted living later today. What it may end up as, is a move for her to a more supervised area. They say they aren't staffed for battling with her every day about wearing pads in the area she is in (that part of assisted is mainly for people without dementia). I told her today she might have to be moved if she wouldn't wear pads, and I got the usual swearing, yelling, etc. No promise to wear them. I hope if she is moved she doesn't have to give up her cat - I think that would be a terrible blow. I appreciate everyone's input. It is a discouraging problem. We had a support group here once but no more. Christina > Thanks, everybody! I talked to one of the nurses today and will be > talking to the head of the assisted living later today. What it may [quoted text clipped - 12 lines] > > Christina I suspect the problem you'll have is the Alzheimers 'catch 22'...even if she agrees to the move, she'll forget she agree to it,and if she agrees to start wearing pads in order to stay where she is, she'll forget. Good luck. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com Absolutely! It would take an aide checking every morning, at least, to see that she was wearing a pad. When I see her tomorrow, she will have no memory of what I said today. It is all so frustrating!! She had always been difficult and the Alz. is only making it worse. Christina I understand where you're coming from and it may be time for more care for your mother. The assisted living where my mother is, does not deal with urinary incontinence. To save money I also do her laundry. It's a challenge to try to figure out what's dirty and what isn't since she hangs everything up. Usually the smell gives it away or the clothes are wrong side out. Mom will change clothes if she has an accident and I wash a lot of underwear in a week. She will put very soiled clothing in the hamper at least so far. Luckily Mom is very docile these days and will take a shower if I run the water and guide her to the shower. I go over a couple of mornings a week to take care of showers and laundry but it's close by and is an excellent facility. She actually has made a new lady friend there with her next door neighbor. They go to bingo and other activies together. They can't remember each other's names but they know each other well enough otherwise. I took a couple of days vacation out of state and when I went over this morning Mom seemed a little worse than usual. Her 87th birthday is next month and we're now starting the 14th year of dementia. This disease has taken so much for so long and there seems to be a long way yet to go.......June > Thanks, everybody! I talked to one of the nurses today and will be > talking to the head of the assisted living later today. What it may [quoted text clipped - 12 lines] > > Christina > Thanks, everybody! I talked to one of the nurses today and will be > talking to the head of the assisted living later today. What it may [quoted text clipped - 12 lines] > > Christina I thought that might be what was going on. When Mom was in Assisted Living I learned that there is only so much they can do. The next step was the Alzheimers locked unit which was much more expensive. The price in Assisted Living varied with the amount of assistance and some things could not be dealt with. I too, was doing a lot of care for Mom just to keep her in Assisted Living, which was nicer and cheaper too. The management was actually letting me slide on some of the care measurements so I wouldn't have to pay so much. It sounds like it's gotten too much for you to do so it may be time for the inevitable change to higher care. Joan >> Thanks, everybody! I talked to one of the nurses today and will be >> talking to the head of the assisted living later today. What it may [quoted text clipped - 24 lines] > > Joan It is a pretty tough call, I would imagine, to make that decision. If I were in that position I would want some help making it from some professionals. Is it dangerous or harmful to live dirty and surrounded by urine soaked furniture and rugs? I would probably say it is, but not knowing how long it would be like that, is the hardest part. If she was in otherwise excellent health, and doing well in other ways, maybe it could be tolerated a little longer. But living like that over any period of time, seems just totally gross to me, and I wonder about health concerns. It occurred to me that some of the products designed to help with pet odors, like "Natures Miracle" for instance, might be helpful too. They are enzymes that totally neutralize urine smell. But if the situation is ongoing, you will probably need to make some kind of a decision at some point. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Thanks, June and Joan, It sounds as if you know what it's like. I think I just need to keep doing what I'm doing until it is time to move Mom. If it weren't for her beloved cat, I would think she would do better in the assisted area with more supervision, but sometimes something like a pet is what keeps people going. I go through periods when I am so disgusted that she won't cooperate. Mom has never cooperated! She had back surgery once and did exactly what the dr. told her not to do and had to have the surgery repeated shortly after. Unfortunately, her parents and my father spoiled her terribly and she has always had her own way. It makes it hard now when she is being told to do things she doesn't want to do. Even though she can't help the way she is now, I find myself getting irritated because I know this is her basic personality from way back. Evelyn, it won't hurt her health to live in a urine-y environment, but it is disgusting to others who walk into it. I use something I got that helps with the urine odor, Urin-B-Gone, I think it is called. I use it in the cat's box too. But eventually the whole place just gets an atmosphere of its own! Christina > Thanks, June and Joan, > [quoted text clipped - 20 lines] > > Christina Well if it really can't harm her health, then that would have been my main concern..... aesthetically I can imagine it is pretty unpleasant. My mother in law's house still smelled bad after two years and all the rugs had been taken out, and the place had been cleaned. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > My mother is 95, late middle-stage Alz. For 6 years, she has had some > urinary leakage - not a lot but enough to cause a definite odor. She > doesn't wear underwear, doesn't ever put her clothes in the dirty > laundry and doesn't always take a shower. Hi. I'm a nurse and I work with people with alzheimers and various forms of dementia. Although your mum isn't 'leaking' enough urine to cause an odour at the moment she could have problems related to this leter on. As urine is acidic this could cause reddening and discomfort to surrounding areas of her skin and could cause infection if the skin begins to breakdown. It sounds like your mum may be depressed which is'nt uncommon in people with alz. I would advise you get a doctor to see your mother if she is on medication maybe it needs to be reviewed. Also the doctor may be able to advise you to a continence specialist or continence nurse (as we have here in England) regarding your mothers urinary leakage. There are a variety of options open to you but I would suggest a visit from the doctor as a first point of call. I hope this has been of help to you. Take care. Ellie. Hi, Ellie, I'm also a nurse with experience with Alz. patients. My mother is on anti-depressants and is always in a good mood except for when she is asked to wear pads. Then she goes berserk! She is very Victorian and I think she believes one should never talk about things like that. I've talked to her dr. about the situation. The leakage is just enough to give an odor but not enough to cause redness. She is ambulatory so she isn't lying in urine. This has been going on for 6 years!! Christina Hi - Maybe your doctor could refer your mother to a continence specialist. > Hi, Ellie, > [quoted text clipped - 8 lines] > > Christina |
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