I do not post often, but always read through the posts and find them all both helpful and comforting.
My MIL has Alzheimers. She was diagnosed almost 2 years ago and has been taking 5 mcg Aricept since diagnosis.
My MIL is still in denial and will not admit to any issues, eg, she no longer goes into the kitchen even to make a cup of tea (her husband is still living and makes drinks and breakfast and we take them a dinner daily). She says the only reason she doesn't make dinner/a drink is that the kitchen is too small.....always a reason for her not being able to manage simple tasks. We do not see the point in reminding her of her condition, so we just let her continue.
We have a couple of new issues arising, and whereas I would say she is currently about Stage 5, i am wondering if we are seeing her enter Stage 6. She does not know her address or her phone number for example (typical stage 5 i think?) and she no longer ever goes out alone. It is getting increasingly difficult to persuade her to leave her sheltered accommodation at all to be honest and she really struggles if you change her routine in any small way. She does not cope well with a planned outing for example...getting very worked up in the run up to the event.
We have had issues with getting her to wash/bathe for a while now but I am now concerned about incontinence. She realises there is an issue and has told me on occasion that she doesnt want to go out "in case I have an accident" (as in wetting herself). This has happened on a couple of occasions when she has been at home and hasn't got to the loo in time (even though it is a very small apartment). She has had a couple of water infections lately too (brought on I believe due to poor personal hygiene and also not drinking enough). The incontinence episodes have occurred when she has not had an infection. I was also called out to her at the weekend when she had had an "accident" and lost control of her bowels. She is aware that it is a problem, whih makes me think that maybe it isnt the Alzheimers? Or is that just wishful thinking?
We have thought for a while that she is going downhill now, and her memory test scores had slipped by 3 points last time we were at Memory Clinic. She just appears so much more confused, so much more often. She very often has a "confused" look in her eyes when we visit.
My FIL has many health issues, including stroke related dementia himself, but he always tries to cover for her. Having said that, just recently he is admitting to having problems with her too.
Any ideas for dealing with the incontinence issue?
The following user gives a hug of support to Tracey110:
Welcome back Tracey. Everything you wrote sounded so familiar to me. Mom always had an excuse for not cooking or anything else she found difficult, even to the point of picking a fight with Dad and then telling him she was angry with him and therefore not cooking for him. She did beautiful sewing and made incredible porcelain dolls. When she was no longer able to do the intricate work, the excuses were amazingly creative. Yet to this day, even thought she and Dad are in AL, she swears nothing is wrong with her. It is all because Dad has vascular dementia. That is the reason for everything. I understand that this is typical of ALZ.
Dad is very happy where ever he is as long as he has his chair, his favorite picture, and his wife. As long as Mom or one of us girls are with him life is perfect. Mom does have major problems with adjusting to new surroundings and new situations. She complains that she can't go anywhere.... you guessed it.... because of Dad. In reality she could go if she wanted to. Every time she has been taken out of the facility lately it has disolved into a tearful or raging episode. Dad is very different but I understand that this is typical
I have the bathing issue with Dad. He resist showering until he is made to do so. Mom on the other hand showers to excess. She has also had problems with UTI.. urinary tract infection... which I believe it due to the fact she forgets to drink. A UIT will definitely make them act strangely. When Mom is off kilter we always have a urinalysis done.
As for the incontenance, they do make light weight adult protective underware for the incontenant that are not "adult diapers". They are less bulky and easy to pull down when she does go herself. If your Mom is aware of the problem perhaps a gentle introduction of these underware would be accepted. Perhaps just bring them in and leave them. When she ask what they are for explain them. See what she does with them. She may be using this situation as an excuse not to be exposed to a "new" situation since it is confusing to her. It may be a passing phase caused by something else but it might not be a bad idea to get her acustom to using adult protective underware.
Dad has a few incidents but I believe they were caused by stomach upset (from medication mainly) and foods that are diuretics. He is on medication that binds his stool and that has helped.
Good luck with this situation and I do hope it's just a result of something she ate, illness, or a passing phase. Hopefully some of the other kind ladies here that have delt with the problem more than I have will be of more help.
My mother had two different kinds of incontinence. She could hold her urine forever, but the time came when she didn't know where to go when she had to. That's when she had accidents. She refused to wear adult pampers, and not until she went to the NH was that solved.
Then she had bad reactions to both Aricept and Namenda (tried at different times) causing such sudden diarrhea that she could not make it to the bathroom. That wasn't really incontinence except from the point of view that after it had happened she went on with whatever she had been doing, like eating Thanksgiving dinner at her grandson's house....
That was solved as soon as she was taken off those drugs.
But there were still bizarre happenings I never could explain, like small pieces of excrement winding up in other places than the toilet, or soiled underwear stashed away in her dresser.
Basically it was a huge improvment when she was watched by nurses and aides all day and changed as soon as there was any sign of need. Strangely, she accepted adult diapers the day she got to the NH. No protest at all.
If I am not mistaken gastrointestional side effects from aricept are usually at the beginning and get better with time. But each case is different so it might be worth checking with your doctor to get his opinion.
We have known for several years that mother had dementia in the form of Alzheimers. Until April when she fell and broke a hip the vascular dementia was not found. She virtually went from the mother that I knew to having no sense of self in 3 hours at the hospital. The same mother that was living at home, cooking, and planting flowers with visits from my brother and I and home health never returned home. She has been from hospital to nursing home, to assisted living for 4 weeks, to a geri-psyche unit, and back to the nursing home. Every day has been a different world! She denied having a problem and was unwilling to take Namenda until about a year ago when it was given to her after a light stroke, and I don't think she ever realized exactly what it was. She had a hip replacement which was decided by a huge team of doctors the best thing to do to preserve her quality of life. She never felt pain and could walk on the broken hip as good as you or I. It took the nursing home staff and me about 8 hours a day to try to keep her from getting up and walking. In three months they had her capable enough on a walker to go to assisted living. The vascular dementia hit again a few days after getting to assisted living. This time it took with it a good part of her ability to walk. Each medication they tried to take the edge off her bad periods of confusion made them worse. She got tired, but never slept and turned the walker backwards and upside down trying to walk on it. She went to geri-psyche for five days where she took another hit from dementia. She was unable to walk but so determined to stand that the nurses kept her chair pulled to the door of their office for her safety. She only realized that she couldn't walk after she was on her feet. She has been back at the nursing home for a week. Bowel problems happened before urinary. She has become so impacted several times that they have had to manually take care of it. She is now wearing adult diapers. She has fell five times in the last four days! The staff is great...it's the same place she was at for 3 months. However, the doctors are trying to keep her moving so she doesn't lose the ability to walk (still in therapy) and at the same time being allowed in a chair where she can get up is very much a danger to her safety. She is mumbling, becoming childlike (playing with baby dolls), angry and trying to hit and kick staff at times, eating only a few bites a meal, and already so dehydrated once that they had to put an IV in as my brother talked to her long enough to distract her to be still. It stayed overnight before she pulled it out, but anything was better than nothing. She is fast coming dehydrated again and is bruised all over. I hope a much slower progression for you, but I wanted you to know that the bowels definitely can be affected and things can certainly speed up when you're not expecting it.
The history the writer describes is very suspicious of care issues. When you first discussed the demetia returning, I thought you may want to suspect a UTI, the symptoms are quite explainable. The second problem the writer addresses is the impaction which is a Sentinel Event in survey language, this does not occur...never, never, The third item that goes hand in hand is the dehydration, a second Sentinel Event and lastly the bruising. These are all descriptions of negligent care and you need to report them to Tenn. regulatory authority immediately.
If your mother is able to hold her bladder then she not incontinent, the NH just needed to put her on a bowel and bladder program. This is a scheduling of toileting that the staff sets up around her activities of daily living as to following meals, getting up in the morning or retiring to bed.
Vascular dementia is different from Alzheimer! I have a parent with each. Dad's vascular dementia decline comes in steps as Ocharlotte describes. It is not a steady progression as in ALZ. It is tied to vascular events in the brain. Dad remained the same for years until a heart episode and he became markedly worse almost overnight. It was several years before the next episode and another drop in his level of congnition. Mom on the other hand, who has ALZ, has had a stead down hill decline. Yes, they have both had UTI's and showed marked decline during the infection but returned to their "normal" when treated with antibiotice. Also it is common for dementia patient to appear "worse" when they are moved to a new place. Mom and Dad were "functional" at home because of their familiarity with their surroundings. Dad could even find himself a bowl of cereal. Once moved he lost that ability because it was a new learning process to do the same thing he had done by long term memory before. So what appears "worse" to us is not. It just shows their inability to handle new situation when was present when they moved, just not as visible because they didn't have that much new to do.
This with vascular dementia, circulation problem, are probably on blood thinners. My Dad is..... and he bruises in his sleep. He can bump his arm on a door way walking to the bathroom and come out with a bruise. A tooth extraction turned a quarter of his face black, blue, and purple. He grabbed my arm to pull himself up and I in like turn grabbed his arm to lock the grip. Almost immediately there was a bruise around his wrist. It was not abuse. It is just the result of massive doses of blood thinners he needs because of his vascular problems and the natural thinning of skin in the elderly.
Dehydration is a major problem with some dementia patients. We are battling that with both of my parents. It is not that they are not offered liquid or have it available. It is that they don't drink it. They forget they have not had liquid. I get all kinds of excuses including, I am not thirsty, I just had something (though I know they didn't), and I don't want that. I kept something to drink within arms reach of my parents all weekend and reminded them repeatedly to drink and they still took in very little. Yes, it can contribute to impaction, UTI's, and bruising but short of IV hydration there is just so much you can do.
The lack of pain from the hip fracture and not remembering that she can't walk are also similar to events that I have seen with Dad and vascular dementia. Both with his tooth extraction and big toe nail removal he never once complained of pain. He had no idea why his face was black and blue. No memory of the tooth extraction at all, even with a gause pack in his mouth, which he repeatedly removed. After his toe nail was removed he put his hard shoes back on and walked out of the podiatrist office. I ended up buying him a pair of sandles and hidding his shoes to keep them off his feet until the toe healed. Mom, with her Alz tends to feel more pain but can not locate or identify the pain. It will aggitate her until the source is determined but she is not helpful in determining the problem.
Dad has had episodes of bowel incontinence but never bladder incontinence. It is tied to the looseness of his stools. He needs time to process the need. His brain can not keep up with urgency. Mom does have a life long problem with constipation but she no longer recognizes the symptoms. Immobility, lack of hydration, and slowing of the digestive process has made this worse. So far impaction has not been a problem but I do see that day coming. Bladder and bowl programs just give them an opportuntity, it doesn't solve all the problems involved.
Both mom and Dad have sundowning and episodes of paranoia, anxiety, and angst. Mom also has sever depression. Dad is a happy soul. Some of that has to do with personality and some has to do with the areas of the brain effected. There is also the factor that they have been plunged into a scary unknown world that makes no sense to them because of their dementia. Medication has been very helpful with Dad and less so with Mom. We are constantly adjusting Mom's medication. Don't give up and keep looking for a solution.... there is one there somewhere.
Yes, I worked in LTC for over eight years and I also have two parents in a care facility. Not every problem is a result of poor care. The first step is to recognize the problem and then work with the facility to correct the problem. Bruises do happen when abuse is not involved, impactions do occur even when you are doing everything possible, quick deteriorations in cognitive level do occur in vascular dementia patients and when a dementia patient is put in a new situation, and even with our best efforts the patients congnition is working against you.
You are right OCharlotte. Things can change quickly, especially with vascular dementia, and you never know when or why these changes will occur. So far we have been very lucky with Dad. He is in his ninth year of diagnosed dementia and he still walks to meals, dresses himself, and is usually continent. I know the next vascular event will probably take some of that from him. He is sleeping more and only gets out of his chair when necessary. I can see his vascular problems slowly deteriorating.
This is such a complicated disease. Dealing with a patient that can't tell you how they feel and that does not cooperate in their care makes it even more difficult. You just have to keep searching for what to do next. I am sorry you are having to deal with this situation but it sounds like you are doing all that is possible to help your Mom. Keep up the good work...... I will keep you both in my thoughts and prayers....
Oh, Deb...you have no idea how much you just helped me!
We got home from the oral surgeon at 9 this morning. Dad's tooth was extracted, with both roots showing abscess. I sure don't know how that could have happened - I take him to the dentist for cleaning and etc every six months! Anyway, he was not sedated, just a local anesthetic, and the procedure took literally 10 minutes. Into the car, and home we go.
I gave him his antibiotics, put him in his pjs, and put him to bed. All this time, he has not said a word - hard to do with a gauze pack in his mouth - but he seemed disoriented.
I had a seat on the sofa, checking on him every 10 minutes or so, and after an hour, heard him rustling around. Gauze pack out of his mouth, sitting up on the bed. I took him to the toilet, repacked his mouth, and tucked him back in. 10 minutes later, I hear him again. Gauze pack out of his mouth, and restless. I repacked his mouth after giving him a drink of water, and tucked him back in. Repeat every 10 minutes for 2 hours.
We are now out of gauze. I finally brought him out of the bedroom to the kitchen, gave him some mashed potatoes, pudding and applesauce, a glass of iced tea and a glass of water, and settled him in his recliner.
He doesn't know, I don't think, that he got a tooth pulled. He sure does not get this whole "gauze in the mouth" thing. I can't even make him do it any longer. I spent 15 minutes trying to get the last pad of gauze into his mouth. Sounds like your dad, huh?
This is more difficult than I thought it would be. He is having such a hard time trying to just understand what the h*ll is going on....I feel so bad for him.
Any suggestions? Should I just treat this like it didn't happen, too? And how long should I keep him on "soft" food? He wants a sandwich!
Skrimp, did they put in a stitch to close the hole. I didn't think to mention it but they did that for Dad and it truly helped. A couple of hours was as long as we could keep the gause pack and ice on Dad. As long as there is minimal bleeding then no worries. Bread is soft enough. Just don't put anything crunchy in it. I am sure tomorrow he can eat a little more substantial but wouldn't do with doritos or anything that might have sharp edges for a few days. It also depends on where the tooth is. Very back teeth are not used as much for chewing. Teeth closer to the front are a little more troublesome. As for why it happened... It just did!! Nothing you can do to prevent it or to know it would happen. Perhaps it was cracked as he tasted one of his rocks
Dad didn't know when he got back home why he had been out. The gause and ice packs annoyed him and he had no idea why we were doing that. After a couple of hours it was much easier just to leave him be than to keep annoying with all the instructions, and considering the fact that there was very little bleeding because of the stitch we let him be.
Hopefully tomorrow he will be back on his routine and this will be a blip in the past. Hope you have had your glass of wine by now. Smile. It's over
Thank you all so much for replying to my post. DGabriel, I thank you for the personal story so much like my own. I hate to know that someone else is going through this, especially with two parents at the same time, but your words helped me a lot to have someone to relate to. You also sound as if you have a lot of experience. Mother bruised very easily before going into the NH. However, with the drop of cognition and falls, it naturally became worse. She was on plavis and aspirin. They have now taken her off the plavix and are using just aspirin. While at the geri-psyche facility, they were afraid that with the huge amount of bruising, she could wind up bleeding internally. The bruising is somewhat better, but her skin is so thin that it is still very apparent. The first huge fall in her cognition happened at the ER with her planning to be checked and return home. I was with her the entire time. I don't think this one was a change in environment but rather a TIA and broken hip. However, I know that a change is very confusing and takes several days, at least, to gain stability back.
I was proud that you understood the impactment of bowels as a possibility and also the dehydration. The post from AskaSurveyor was very interesting, too, and I appreciate his opinion. However, I have sat with Mom for hours trying to get her to drink everything imaginable to wind up only getting a couple sips of anything down her. I was most successful with tea...great, it's dehydrating in itself. The NH took that off her menus and are bringing her juice. Techs have even bought her sodas during the day when I wasn't there to try and get her to drink.
I have always been scared of NH's because of the horror stories that we all hear. However, the entire staff has been so helpful. The last two days that I have come into her room, there has been a nurse and two techs with her. They have had her in three different chairs trying to prevent falls and are now keeping her sitting in the hall to watch her better. They are now looking toward getting Medicare to help buy a chair they do not have that she could move around in but will not tip over. I have been overwhelmed at the care she has received in this home. I never thought I could be pleased. However, you can see her love for many of the techs and nurses, and mother will tell you how sweet they are. I know that she wears them out, but they never seem to let it bother them.
I can still say that I have never seen a progression like this. She is now mumbling and playing with baby dolls. Extremely agitated one day...a little calmer the next. Crying spells...often because she thinks someone is sick and needs her to come...most often the person has passed away long ago. She is losing the ability to feed herself. The techs, therapy, and I are trying very hard to keep her doing this herself. However, many times she acts as if she doesn't know what a fork is for. I saw her take her fingers and play in vegetable soup the other night as if she didn't know it were food. Will we see a plateau??? Is this going to be bang, bang, bang, gone?
I can't thank you enough for taking the time to tell me your story. I have found that this mixed dementia of vascular and AD together is understood by very few. You are the first to give me as much personal history and similarities into this condition which sounds so familiar. There is one support group in my area, and it consists of AD patients only. All but me are much older spouses, and not daughters. My parents were in their 30's when I was born so I think I may be among the first to enter the "sandwich generation," as I try to deal with a sick mother, children, and grandchildren where I have already faced an A & D problem and two year custody battle over my granddaughter. My son now has legal custody of a 4 yr. old daughter, and they are living with us. At the same time, five years ago when I felt the responsibility letting up, I quit work and went back to college. I graduated in May as a Social Worker. I have not been able to look for a job, as my social work has kept me busy within my own family! Funny how things happen. Once again, thank you.
Last edited by ocharlotte; 09-18-2008 at 12:11 PM.
Reason: Well, I have a lot of work to understanding this board. I thought this was going to your email!
Thank you ocharlotte. I do understand your frustration because I have been there myself. If I can be of any help it makes it all a little more worthwhile.
When you talked about the bruising I immediately knew what it was. The thinning of the elderly skin plus the blood thinners creates black and blue loved ones.... especially with the cognitive level is decreased and they are falling or bumping into things.
The broken hip could have been accompanied by some other vascular event that caused your Mom's cognitive level to slip. A TIA can cause a fall that breaks the hip or the hip fracture may lead to some other vascular event. I was unaware until I worked in LTC for years that many broken hips occur and cause a fall rather than the fall causing the broken hip. Sometimes it's hard to know if the chicken or the egg came first.
Carbonated drinks are also dehydrating. I push gatoraid when I am there. Mom likes the fruit punch and Dad thinks the lemon lime is Mt Dew. Dad will drink water if I put ice in it and hand it to him but Mom just sets it down. They both get cranberry juice at meals. Dad drinks his and Mom leaves her's sitting. Mom has had two UTIs and a couple bouts with constipation which I think were all brought on by her refusal to drink even when we try our best. I truly do understand doing all you can and it just not happening!
I agree that there are some amazing facilities. They are not the "horror stories" of the past. I have seen the caring compasion of the staff towards Mom and Dad. When a care manager walks out of the room and says... "sometimes I just get too attached but I can't help it".... you know you are in the right place! I also know how much I cared for my patients when I was working in LTC.
You mom is calling/looking for somebody that needs her is because, with no current memory, she is stuck in the past. Stuck at a time when a friend or family member was sick and needed her. Some want to pick their kids up from school when the child is now 50 and standing right beside them. Dad always needs to go help his mom.. milk the cows. (she died in '72 and there have not been any cows since back in the 50's) Dad's time frame is validated (in his mind he is in his 20's) because he talks about how physically fit he is, just before he falls asleep. Yet his time frame is split because he does recognize his daughters and then ask us about his brothers and sisters. He has his generations mixed. When I talked to Mom earlier in the week she explained to me that she was having a problem with her hair. When I ask her what kind of problem, she told me that it was all white. Her hair has been all white since it came back in after her chemo in the mid 80's and she has never colored it. It was as if she didn't recognize herself in the mirror. This gets more profound as the disease progresses. Sometimes you can find the reason in the past for her actions but sometimes it's a mystery. We had a lady in our facility that was an escape artist and always searching for her pink cadillac. None of her family members had any knowledge of such a vehicle in her life. I always wondered if it was one of her past boyfriends
Is the aggitation at a specific time of day or all day? Sundowning, which is extreme confusion with aggitation and paranoia which occurs usually at a specific time of the day (usually around sundown) is a common occurance with dementia patients. Dad is much better in the morning and early afternoon. About sundown... after supper..... he become much more confused. This is accompanied by various degrees of anxiety and paranoia depending on the day. Mom's aggitation is random. She has good days and bad days which is also common. Some are more placid (Dad usually is) and some are more anxious (like Mom). Each has their own pattern and temperment. Bless the happy pills that Mom and Dad are both on!!!
You might want to ask if you Mom could have finger foods. Sometimes they do lose the ability to use utensils but can still pick up food and get it to their mouth. Soft cooked baby veggies, boiled potatoes, bits of hamburger, even sandwiches cut into pieces works well. My grandmother didn't use a fork the last few years of her life but she could pick up a barbeque sandwich and eat it or chew all the meat off a barbeque rib. (Yes, she LOVED anything barbequed). Pick out her favorite and figure out a way to make it finger food. We also made finger food out of chicken and dumplings. Towels can be washed after you finish cleaning up.
As for knowing how long anything will last.... we don't know until it's the next step. Dad has had his dementia for nine years. He is doing incredibly well for the length of time he has had it. Mom on the other hand is progressing much more rapidly. She hid her symptoms for a couple of years and has been diagnosed for two years. She is, in many ways, worse that Dad is now. We just have to enjoy the moments we can, get through the not so good times, and be prepared for whatever happens next.
I am truly sorry that your Mom has had such a rapid decline. I do hope she levels off and you have some good days with her.
My Dad was 30 when I was born but he's now 88 and Mom is 79. At least they waited later in life to be afflicted with this horrible disease. Mom did care for Dad until she was unable to do it because of her own inabilities. So I am where you are.... with two parents. I have a daughter that is 29 but back in college herself so no grand kids. I graduated from college many moons ago before they had social work degrees. I had a degree in Sociology but spent my years in LTC doing everything including the social work. It was a private home and I was hired before it was open and stayed until it was a success. At that time my daughter needed me more than they did ;-)