Help, any ideas or tips ? Husband has frontempural dementia as well as PSP. Hoist has to be used, he has a catheter fitted. The problem we have is that he keeps asking to be taken to toilet for bowel movement, it's a complete obsession and I'm talking about every 40 mins or so. This involves hoisting onto commode, taking to bathroom, move hoist to bedroom for clean up, move hoist back to lounge to hoist into chair. No mean feat as those with hoists will know.He is not constipated , just has to go to toilet all time, most visits are non productive., but even if bowels are opened within 15 mins he's asking to go again. I've tried just after meals and set times and even refusing when I know he has already had bowels open. Is this PSP or FLD at work. Any one with thoughts on dealing with it. There have been couple of accidents when I've not taken him.
Second problem...once carers have put him to bed he constantly calls , most times it's for something ridiculous , sometimes it's nothing... he just wanted to call me he says. Why ???? I felt like it is the reply. I'm up and down like a yo yo, all dat to toilet , all evening cause he's calling and then about 5 am he shouting to get up. Hospice, doctor and neurologist just scribble it down and say mmmmmmm.Im feeling at wits end . Has anyone else dealt with similar issues. ?? Regards to you all. ..GW x
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Omg you must be totally exhausted I would not be able to cope and probably would do some shouting. My partner takes Loperamide this may help with the constant feeling of needing to poo and stops runny poo. xxx
Oh my god George is the same, always wanting to go to the loo, up to 10 times a day doesn't do anything, it is so frustrating, tiring. Not sure there is an answer to it, george has been like this for over a year our longer, as soon as the careers go , he wants to go to the toilet. At night was bad, but he now has Clonazepam 500mg and zopiclone 7.5 mg , work most nights, we still have some bad nights, but if he gets agitated in the afternoon I give him a Clonazepam, calms him down. Kevin said Liz has the clonazepam , they are good . Big hugs. Yvonne xxxxx
Has same amount of Zopiclone , I'll look into the cclonazepam. Our problems start as soon as carers have left about 10 am Carries on till 7 pm, between 6 and 7 pm tonight he asked 6 times , I took him 3 , did nothing. Finally I refused and said carers could take him at 7 10 pm. They arrive, ask him if he needs loo......he says NO .!!
Try not to take it personally. Is it possible he doesn't feel comfortable having the carers take him and prefers you to be there? Of course, that cannot be the issue every time! Hang in there, sounds super frustrating...
That is so difficult for you GW and I don't know what the answer is, Ben often has false alarms when he says he needs the loo, I no longer wheel him through to the toilet but let him perform on the commode as it's a lot less trouble for both of us and means he has less accidents. He takes Laxido laxative every day and usually goes to the loo roughly every third day but that's not totally reliable. Last week I couldn't let him go to the hospice as he had 3 false alarms on the Monday and goes to the hospice Tuesday, I knew he would need to go on the Tuesday and didn't want to risk him soiling himself. Good job he didn't go as the call of nature happened and was a mad panic to get him onto the commode, just about made it on time. The loss of dignity is the thing that gets to Ben and he would be mortified to have an accident at the hospice.
I find this part of caring very challanging as so unpredictable when he goes and I get really on edge when I am expecting it to happen at any time. I don't know how you cope with him saying he needs to go twice a day. Seeing the bowel and bladder nurse soon.
Yes , it's how I feel too, he's not constipated , it's an obsession of the mind, like he has to be able to touch the clock and so on. Been this morning at 10 am , good and proper and has been asking to go again every 20 mins. As I know he's been I can confidently say no. Xx
If you are in the UK contact your GP and District Nurse team. Ask for Marie Curie Nurses to do night sits. (should not have to pay).
Contact your social worker and/or GP to ask for an assessment for a continuing health care budget. Ask for day care services for your husband and respite to give you a break.
My husband was initially diagnosed with FTD but this is normally a mis-diagnosis because the PSP presents more clearly as time moves on.
FTD is commonly diagnosed when the patient presents with the behavioral variant of PSP first (instead of the Parkinson shaking symptoms), so it is likely they have just kept the FTD label that he no longer has, it will likely just be PSP that he has. Although neither diagnosis is wanted and both are equally cruel, you need to sit under neurology, not the Dementia team. Why? because you will get a lot more support and are far more likely to get CHC.
Hi, we have had one of the problems you are describing - the constant bowel movements and visiting the toilet frequently. With my father it was immediately he ate - and he ate constantly, the day was like a non stop buffet but we never gained weight despite hardly moving from his chair. However, eventually we realised that we had missed something. The Community Matron suggested he may have IBS. (Irritable bowel syndrome). The GP prescribed Mebeverine before meals and this has helped. He is no longer constantly needing to go and has put on a stone in weight.
Hi GW, personally I put it down to bloody Psp!! Exhausting times, I know, I remember them well!! Just before my Dad became bed bound someone suggested pads (not from this site, a so called professional) I took great offence at the time! However, sadly I think it may be time for them......I haven't read the other replies yet, am about too!! Can you get any respite? Because exhaustion is a killer darling x
Hi gw. What a terrible time you are having. Toilet problems seem to be an issue with everyone, to a greater or lesser degree. You need help at night and neurologists, not dementia people. Good luck and god bless. Marie
Hi GW, yes I had exactly the same with Steve. He was constipated continuously. I felt I had to fight the District Nurses all the time, to allow him to be able to go. Still feel very bitter about how he was treated. I know there was nothing anybody could do about PSP, but in this day and age, I think he should have been allowed the dignity and comfort of being able to have a bowel motion regularly. Their answer was drink more and take this powder in half a pint of water!
I would like to see the PSPA give out more information on this issue, so I could have taken that advise to the doctor.
With Dad once it become extremely hard and unsafe to get him on to a toilet he started wearing adult diapers 24/7 with a leak proof pad under him at all times, also a catheter. He normally knows when he has to go so then I get him in bed and treat it just like they do in a hospital type setting. It's not the most dignified method but safest for him and I.
He was resistant at first but after explaining to him that it's not worth a possible ER trip if he falls he finally stopped complaining.
Yes, it will come to that soon. Biggest problem is his obsessional behaviour I wanting to be taken to loo.. Even 15mins after he has just been. He does not give up. I get very little time to myself as he has to be fed and everything else done for him. I hate this psp with a vengeance. X
We have very similar problems reading the prev posts seems a common denominator in PSP.
My husband takes Clonazepam at night. he takes about 2- 3 hours to settle and then it works for 3 hours so I plan my night time sleep very carefully!! I have to confess there are times he is pressing his bell and I simply do not have the energy to 'jump' out of bed and run to him☹️ But if I do not go immediately I always regret it!
Def explore night time sedation and maybe a night sitter. I have just had a weekend away and his nephew stayed apparently he called only 3 times overnight - unheard of when I am there!!
Do look after yourself
Sending love and hugs if only I could send sleep for you instead
Yes, others don't seem to get it as bad as the carers, it's the old saying ...familiarity ........He has sedation at night but it doesn't kick in until about midnight and he's awake early. I had to remove bell as he kept ringing it to "test " it. Xxxx GW
GW, we're dealing with the same situation here except his obsession is going back and forth to the bedroom all day long. I'll just get him settled in his lift chair and he'll insist he HAS to go back to bed, and then we repeat from the bedroom. Some days he'll be in and out of bed 9 or 10 times. Not counting trips to the bathroom during the day and night. I've tried refusing and encouraging him to relax where he is, and then he gets very angry and tries to get up on his own. His neuro and our psychiatrist (we see the same doc) believe it's caused by the PSP and worsened by FLD. not sure anyone knows for sure. Just yesterday we discussed sedation - probably morphine - to deal with it. Will probably start that in the next few days.
It is exhausting physically and emotionally, and incredibly frustrating.
I so agree, your problem would be very similar then, an obsession with bed , whilst we have obsession with loo. I am screaming. I say no for up to 2 hours then I give in. In that 2 hours he does not give up....he calls and asks nonstop. If I go out the rom he wriggles and shuffles until he is almost sliding out of chair. The catheter has been in place for a year solely cause of constant trips via hoist for a pee.....I couldn't cope and convene wouldn't stay on. Problem is still there except it's not a pee needed. He is not constipated...problem is in the mind. I'd be interested if you ever get a workable solution. At present I feel as if I'm a full time hoister!!!!!! Only time I get a reasonable day is if he a bowel action in morning, then I just refuse to take him again , he still asks all day. I think it sounds reasonable to sum up cause is psp aggravated by FLD. All the best , keep us informed GW
Thank you for all the replies, it's painfully obvious lots of you have similar problems, lots of helpful information too.Im not alone !! Is there anything worse than psp ? God bless you all. X GW
It sounds like what I go through only you have it harder. I don't use a lift but maybe need one. It took me about a hour to get Chip off the floor last night. I don't think I can do that again my back is really in pain . Would it be better to just let him totally use a diaper in bed???? OR A BEDSIDE COMODE? I PUT HIS NEXT TO HIS LIFT CHAIR WHEN HE NEEDS IT AND PIVIOT FROM CHAIR TO COMDE. IT S.IS EASIER FOR ME TOO CLEAN HIM THEIR. HE HOLDS ON TOO THE SIDE OF COMED CHAIR I CAN WIPE. PUT PLASTIC BAG IN THE CHAIR SO THE CLEAN UP IS BETTER PICK THE BAG UP AND PUT IN TRASH OUT SIDE. DON'T KNOW IF THIS HELPS. YES CHIP HAS TIMES HE IS OBESE ABOUT GOING.I DON'T KNOW WHY THE CATHER OR COULD HE JUST WEAR A PULL UP OR DIAPER??? THIS IS ALL SO HARD TO DEAL WITH. GOD BLESS US ALL NOTHING EASY ABOUT THIS LOVE YOU JENNY🤕😰
Aw, thanks for that Jenny He has to be hoisted for everything , diaper wouldn't work just yet but we will be reaching that stage soon. No it's not easy , shocking illness isn't it .God bless x
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