Urological problems with Dementia

[mrsjerome]

I am just frustrated beyond belief. My husband went to a nursing home in Feb. after spending a couple of weeks in the psych unit at the VA hospital in Jan. He just turned 74 a week ago. He had botox injections in his bladder the end of May. This was done cause the meds they tried to alleviate the urgings did not work. He has a weak bladder with overactive urgings. He also has some kind of dementia but doesn ‘t appear to be like alzheimers. These problems manifested almost 3 years ago. He had a Turp procedure done 2 yrs. Ago This did not correct the problem. The bladder is the culprit of these problems. So in the beginning part of last year he was put on self catherization In Dec. the urgings where so bad and he was catherizing so often without relief. He really went wacko here. They then put a foley in and that really drove him over the edge That is how he ended up in the psych unit. Fast forward to May seemed to be doing ok after the botox and could self catherize again. However the nursing home contrary to the urologist recommendation went from the 6 hr. max to a 8 hr. regiment cause they said his output not enough. Doing okay until a week or two ago the botox seems to be wearing out & urgings are returning. Now is looking for the self cath more than ever . Placed him on Ativan & lexipro to calm him down. His ability to understand is diminishing. They want to put him back on a foley but the urologist from the VA says he can hurt himself by pulling that out and it would be much safer to self cath him if needed than go back to the foley. There is a difference in thinking here between these two facilities. The gal from the VA called me today to get the number of the facility to talk to the one in charge. As of this afternoon when I was there she still did not call to get this straightened out. Think my husband may have a urinary infection again as that may be the reason for his erratic behavior & he has had 2 this summer but really didn’t display the behavioral problems he has lately . This is getting to be more like how he was behaving before they put the foley in Dec. but so far the home is not testing again for it. This strange behavior that I observed this past weekend could also be the results of these 2 meds they put him on. He tells me the meds are working cause he is feeling good and can now come home but yet he is restless and agitated . The home says it manifests itself more at night They call it sun downing . I am just at my wits end from all these years of caring for him. Oh yes his cognitive troubles started close to 8 years ago after brain surgery after which he suffered a stroke and seizure. Problems with him have been festering ever since. I could write a book about all of this but now mainly am looking for any kind of guidance I can find. I think this is mainly an alzheimers forum but there are other forms of dementia besides alzheimers. So I don’t know if anyone has ever heard or seen of a problem like this..

[tic chick]

welcome mrsjerome! *bunch

yes, there are other forms of dementia besides alzheimers. one of them being what your hubby possibly has and that is stroke dementia.

just a thought, has he had his prostate checked? he should have a psa test and a manual prostate exam to see if his prostate is enlarged. this causes the prostate to squeeze the urethra, which runs right through it and the urgings to go are still there, but nothing comes out because the urethra is too narrowed for urine to come out.

i hear your frustrations. perhaps getting hubby involved in some kind of therapeutical activities would calm him down, like painting, etc. talk to the va hospital about outpatient resources.

you don't have to shoulder this burden alone!

take care of yourself,
jeannie

[mrsjerome]

Jeannie
I mentioned that he had a TURP procedure done 2 yrs. Ago. This procedure scrapes the prostrate. He has had testing showing it is a bladder problem not prostrate. The problem now is the fixation on this problem. He was fine for a while after the botox but then the director of nursing rescinded the urologists recommendation of self catherization from the 6 max to an 8 hr. max. Now the the botox is wearing out (It is only a temporary fix) He is getting more agitated about having to wait the 8 hrs. & is pestering the staff for it to be done sooner. The head nurse wants the dr. to put him on a foley. This is the dilemma
He had big problems with tolerating an indwelling catheter .This is one of the reason why he had the botox to begin with. It improves quality of life and it is safer to self catherize or even have the nurse do it than with him getting agitated and pulling an indwelling unit out. This is the problem with trying to get the head nurse in charge of the facility to recognize. She has just opposite thinking . I have just a hunch that this is just for their own convenience . . So I am at my wits end of what to do about this.
You are right about the dementia the VA has it more categorized as vascular because of the strokes after the brain surgery But this urological problem is something that he does not have to capacity to deal with . Whatever his body is feeling he acts like he is in pure torture. Right now they have him on 2 meds I mentioned and he is also on Seroquel too. This is suppose to calm him down From what I see these past few days it may have calmed him down but he seems more confused and lacking then just 2 weeks ago.
Mrs J

[tic chick]

mrsj,

sorry my brain wasn't quite working this AM. of course, i know what a turp is.

perhaps the nurse can be persuaded that an in-dwelling catheter causes more bladder infections? it seems the medical profession is unawares of exactly how dementia affects a patient. when my mother in law was in the hospital, they put an iv in her arm. i said they should put mild restraints on her because she doesn't know that she can't get up and walk with an iv in her arm. well, she did just that and had the iv ripped out of her arm. the next day she was in mild restraints.

yeah, unfortunately, the ativan and lexapro will probably make his dementia more evident.

there are a couple of other ladies who post here helping people deal with problems associated with dementia. they should come along in a day or so and will see your post. i'm kind of a newbie to dementia care, also. my mom has probably had it about 2 years, but is still living independently, but i don't know for how much longer.

it's a terrible disease, mrsj, and you certainly have my admiration for taking care of your hubby all these years, but it seems you are showing the effects of that and maybe need to get some help, so you can recuperate mentally and physically, also. *bunch

jeannie

[Tootsie]

Reading through your descriptions of your husband's problems with urination gives me the impression that you are caught between 2 different administrations who disagree on the best way to handle your husband's condition.

Is there such a thing as an ombudsman in either facility? I think that you have a very legitimate complaint against the nursing home. I do agree that putting in a Foley catheter that he might pull out can permanently damage tissue and any remaining control he might have. No doubt the nursing supervisor is looking to have catherization done only once each nursing shift. If her reasoning is that he does not produce enough urine to do it every 6 hours, then you should immediately question WHO is monitoring his fluid intake?

Dehydration can occur very easily in nursing home unless there is accurate fluid intake recording done by the staff. You might bring this issue up with the doctors at the VA. Is poor fluid intake complicating his already puzzling symptoms and aggravating his dementia?

I think you also need to push for at least a routine urinalysis to make sure that he does not have an infection. Catheters are notorious for causing them, no matter how conscientious the person doing them. I heard one doctor say onetime, that catheters are like freeways, for pathogenic organisms.

What are your options for moving him to a different nursing home? Who supervises and licenses nursing homes in your state? Or, is this a federally administered nursing home affiliated with the VA system? Find the answers to these questions and start making inquiries...politely and without threats or emotion.

Yes, this forum is named, "Alzheimers's", but we are always willing to put in our 2 cents for anyone dealing with any kind of dementia. The principles are always the same and the frustrations, likewise. I had my mother in my home for a year before it was necessary to put her in a residential care home. There, she fell and broke her hip, and eventually died in the nursing home from the complications that affected her already weakened heart. Cheerio.

[mrsjerome]

Hi Tootsie
His fluid intake is definitely a problem. The Drs. have suggested he drink a litre a day. He just takes small sips and says he is not thirsty. If this would be me I would be drinking water by the pitchers. He is very stubborn in regards to this and among other things. I think he fears that when he drinks more then can’t go and is forced to wait the 8 hrs. he finds that unbearable so refrains from drinking more in order to alleviate the need. The nursing home does not monitor his intake just the output. They have water out for him but he leaves it sit there and although some encourage him to drink others state that they can’t make him. I am going to ask them though if they can keep a record of how much he is actually drinking. I don’t know if they will agree to it cause that might just make more work for them and they really don’t have a lot of help. That is a good idea about asking about doing that. He has had 2 urine infections this summer. I asked about doing another culture and was told they can’t always keep giving him anti-biotics This nursing home is not affiliated with the VA but is independent. The Drs .from the VA tell me that they can recommend treatment for him but it is the nursing home’s call as long as he is a resident there of what they follow. Right now there are two different viewpoints on this catheter situation. It is not easy trying to find residential care. A lot of nursing homes have closed shop in these past years. So finding him another one could take a while. Too long I am afraid to rectify this situation. The other recourse of course would be to bring him back home. After all the problems that occurred this past winter I am very reluctant to try that. He manifests a lot of his problems at night and I just don’t trust him to understand. I have been told this is called sun downing a term that I am not all that familiar with.
I guess in the meantime will just have to wait it out . Right now my hands are tied. I am going to try & reach the nursing homes medical dr. in charge and talk to him
It’s a shame though that after having gone through this botox procedure they could not give it more time and follow the Urologist from the VA recommendations. We’ll see what happens.
Mrs. J

[Tootsie]

I find it incredible that nursing home personnel expect him to remember to drink water! There are times when I don't drink enough when I am busy and preoccupied! There are definitely nursing care skills that will work and get people to drink more. I would seriously look into making some kind of formal complaint about the quality of care.

I do agree that you should not bring him home again. As his major caregiver, even when he is in a nursing home, you need time to yourself for rest, and planning your next action to ensure the quality of the care he receives. Speaking with the medical director of the nursing home is a good beginning. I wish you success. Let us know how that turns out. Cheerio.

[mrsjerome]

Hi Getting back to you on the problems with my husband. The botox injections he received in May have worn off. He is able to go on his own but still has difficulty doing so as he did before. He is not self cathing anymore but he even though he has trouble is trying to alleviate that by drinking more water. Sometimes it works and at other times he just suffers through until his bladder will fill enough to allow him to relieve himself. He had another UTI since I last posted. The nursing home sent him to the ER hoping that they would do a psych evaluation & keep him there but when the UTI was discovered he was sent back to the nursing home. I had a quarterly evaluation with the nursing home last week that lasted all of 10 minutes. They tell me he is doing better now with new anti psych meds prescribed for him. I am worried that these meds will last only so and so long then what will they do.? My mail lady has a mother in this same nursing home & she is very close to removing her. She told me that they have an activity room but they have all the wheel chair bound patients in there and half can’t do whatever they are trying to get them to do. She told me that her mom who is active like my husband & some others do not get the activity that they should. She also complained of how dis- organized some of the staff are . She suggested that I should try and find a different place for my husband too. So in the next coming weeks I am going to be checking out and trying to find a new place for him. If I fail at doing this I am going to bring him home. I maybe getting myself in for some real tough times but so be it. At least I will have more control over some of his treatment. This last psychiatrist that he had seen I tried to express my concern over the new meds he is being placed even when a UTI was present even tried to show him the study of these newer anti-psychotics but was abruptly told that I could always find another Dr. and if I don’t like the treatment can always look elsewhere. He has been on all of these anti-psychotics this year at one time or another.Abilify, Zyprexa, Seroquel and now is on Risperdol along with Lexapro Zonegran & Depakote. This psychiatrist tells me he has brain damage along with a mental disorder. I tell you any mental disorder was caused by the urological problems that just made him go over the wall. I know the brain damage caused by the brain surgery led to a lot of cognitive issues but he was coping with this until the urological problems surfaced. I thought for a while this would be alleviated by the botox injections but the nursing homes refusal to follow the self cathing procedures by the urologist just made him regress again. So as I see it have no choice if another home can’t be found for him will have to take him home. I know it will be a struggle especially at night but just cannot let conditions remain the way they are. I will try and update to what if any progress I make concerning this. Oh another thing I am concerned about is the prevalence of alzheimers in his family . His mother had it and now his older sister does too.

[Tootsie]

I apologize for not getting this reply to you sooner but I have been away for a few days and today, I keep getting interrupted.

Please consider carefully before you decide to bring your husband back into your home. There, you are the only caregiver and are at high risk for developing health problems of your own due to the 24 hour stress of taking care of him, lack of rest, the worry and concern. Will it be safe to leave him while you go to the grocery store, the dentist, the bank, etc?

Reading over your recent post, it seems that there is legitimate reasons for his problems in that there is organic brain damage, some question of dementia of some kind, plus the urinary difficulties. I think it is unlikely that he will return to his previous level of functioning no matter where he is. Sometimes the structure of an institution helps someone with dementia cope with the rhythms of daily life.

Are there volunteers to help in the activity room? Are you able to take simple board games, cards, even Lego's to keep him busy and active while you are there?

You might see if there is some kind of non profit nursing home in the area that has a different philosophy of care more appropriate to your husband's needs. Cheerio.

[mrsjerome]

Hi Again
I have tried looking for another nursing home for my husband but so far have been unsuccessful. He hates the home he is in and wants to come home. I fear though his behaviors have become more than unmanageable. It is so strange that his memory can seem so intact but the rest of his brain so unreasonable. He is rude and insulting for no reason. He tells me that someday I will be sorry for leaving him there. That he is going to die and it will be all my fault. I try and tell him that I couldn’t cope with his behaviors and I just want him to be safe, but he goes right back to the same thing over again. I don’t know if it is the meds or just more of part of his mind deteriorating. He just seems to lack empathy for anyone else but himself.
I think this nursing home would like for him to leave too. I got a call from them today and apparently he is calling people devils and telling them they are going to hell. Then from what I understood a family came into there today to check the place out for someone in their family. He went and interfered and told them that this place is no good only has one bathroom the nurses are no good which of course they are not happy about when one of their residents is bad mouthing the place in front of perspective clients.. So again the Dr. is called and perhaps a trip to a different hospital for evaluation may be in store for him at the end of this week.
In the meantime same meds only an increase in dosage. My son & I tried talking to him afterwards and at first seems coherent then goes on and on how terrible life is for him and he wishes he would die. He wants to come home doesn’t want to go to any other nursing home tells me I am sticking up for the nurses and that I should be listening to him instead. Then round and round he goes.
Well that is the latest . I don’t know why they bother with the meds as don’t seem to have any effect on his reasoning ability
After talking to him today don’t think he will get better. The part that puzzles me is that his memory still seems intact. His mother had alzheimers and now his older sister does too. But the first thing apparent with them was their memory loss.
There is not a lot of activity that he likes to join in with Today when we went there they were playing Bingo and he was just lying in his room watching some religious channel.
He used to like to do word search puzzles but now does not . I think he might have a hard time focusing on it and probably gets frustrated . His eyes are ok as I had him at the eye Dr. a couple months ago and his vision was fine..

[Tootsie]

This is such a miserably frustrating and painful time for you, it is hard for me to offer any kind of hope or encouragement. Believe me, none of us agree with your husband that you are selfish, uncaring and should take him home.

There is a form of dementia called prefrontal lobe dementia that involves an area of the brain that deals with social behavior. When it is damaged, patients lose all of their social skills, frequently act out aggressively and make sexual comments and gestures inappropriately toward anyone.

I think that you need to view your husband's comments and behavior as a sign of the organic brain damage that you know has occurred. During his rants to possible new clients visiting the nursing home, if you have the opportunity, you might mention to someone visiting, in a quiet and private way, that your husband has a brain disorder and is not responsible for his comments and behaviors. You can simply make a gracious apology and let the situation go.

Remember, you are not responsible for his behavior and cannot control it.
The nursing home, may find it necessary to have him admitted to a facility where a complete evaluation can be done. That may mean a trip and eventual admission to a locked facility where personnel are trained to handle that type of behavior.

My BIL had to be put into the locked wing of a nursing home due to aggressive outbursts toward nursing home personnel. Partly, his behavior was due to poor training and lack of sensitivity to his need for privacy in the bathroom. They insisted on staying in the room with him and he would lash out physically. In a different facility with the locked wing, there was a male nursing attendant that understood and developed a relationship that was very satisfactory.

The only suggestion I can think of is to change the subject when he starts on one of his rants against you. Take some of his favorite candy, and ask if he'd like some now or later. Ask if he remembers when.....a trip, a movie, something that was enjoyable. Take him pictures of happier times and talk about them. Will the nursing home let you share a meal with him sometime during the week? Can he play simple card games with you? Old Maid? Gin rummy? Checkers? Hang in there. Cheerio.

[joy]

Just in case we are ever "lost" again. There is a lot of great material here and I'd hate to lose it again.

[Jo6]

I think we should, how about everybody else? I can't bare to see this forum go by the wayside. I care, Julia

[joy]

i hate for the loss of any of it and {{{members}}} also. I am not especially good at giving info but i like to TRY and help. it seems i can get myself in a state just doing that but at least i do know what others are going through and how awfully hard it is.

And I know well let me rephrase that Jo, you are invaluable also. You are so good at helping and I recall all the many times you gave the right thing at the right time to people just when they were hanging on. That means at lot.


{{{{HUGS}}}}my eyes are jumping tonight so I won't be doing anything until that stops a bit tho. I wou;ldn't hurt for I would say several of us to try and copy material and keep it just to be sure it isn't lost. On a disk even labled in MY case and also other ways as I tend to lose things these days!

[Jo6]

it seems our mind tends to run along the same path;) I was thinking about the disc idea. I'll pick Kens brain and give me an idea how to start. Course we don't Have to mind him:D
You picked a very good one to start on. If we would get question, answers and follow up if there is one.

Joy you also have been a valuable member of AD.You have been a great help for me and I thank you for this. I can't express how helpful you, Tootsie, and several others are helpful together. Mrs.J , so many, Do you remember Betty? What happened to her? She was a good one too. the capturing of the material will be a good project. I think Tootsie would approve:) So, lets see who wants to help? I've got some idea, but will keep for email if that is alright. take care Joy, Jo

BTW, have you all heard from Lavan? I like her a lot and I miss her. Let me know if you do here, please