how can I get my husband to keep his inco.pants on.!!! He takes them off inthe night
then wees TWICE last night He's lying in a dripping bed with the dry pad by his side dementia symptoms seem to be getting worse as he said he wasnt responsible
for any of it,How can I cope with at 4am without shouting!!!

I'd shout if I were you, but perhaps out of oh's ear shot?
Sorry I can't help you, as I've no experience at all:but I'm sure you'll have some helpful responses soon. All the best. EM

When I worked in a care home (again!) we had to put on a washable padded under cover (a Kylie it was called) for the person to lie on and no incontinence pad. In fact, we were supposed to put these pads on the bed in preference to wearing incontinence pads, I think because it was considered better for the skin. They had some funny ideas of doing things in that Home.

Better still would be to put the protective disposable white underpads used in hospitals for your husband to lie on. I expect they would be availabe through the chemist.

Hello Kay

I sympathise totally with what you are feeling. I had the same problem with my husband taking his pads off and then weeing in the most inappropriate places. I'm afraid I don't have an answer but Polly's suggestion sounds very practical.

It is so hard when you are not getting sleep. Do you get a break? And do you get any support? Dealing with dementia on top of the physical difficulties caused by Parkinson's is so hard. My heart goes out to you because I have been there. My husband is now in a home but when I look back I don't know how I kept going for as long as I did.

Much love

thanks for your useful suggestions Worral and other replies,its comforting to hear from those who understand.I will enquire about a Kylie sheet,trouble is the Duvet
gets wet as well,soI'mwashing that every day as well.I do get carers4x's aday which is a big help A few weeks ago I was given a 48hr respite break[big deal]but better than nothing.I went to the seaside on my own,stayedin alovely hotel overnight and
really enjoyed the peaceregards to you all Kay

Hello Kay,

Have you had an incontinence nurse visit as they have many different methods that may help, you can also get a quilt which is waterproof they use them in nursing homes so you might see them on line somewhere. We used the kylie and Dry-night bed sheets that are really for children but worked really well. Your husband may need to have a catheter although he may pull that out. I do understand as I was washing four times a day as my husband got through so many changes of cloths a day just because he wanted to or got too hot. You might get some information from the Dementia Care Trust,
best wishes

thanks Vivian for your suggetions,he's just been shouting at carers,who are asking him to spit out mouthful of toothpaste and he wont!!!to Worrals--what made you decide to put your husband in care? and how long had he had PK whenever Alans been away so that I can have a break,he comes back more confused,Oh,what to do for the best,I wish I knew.regards to you all Kay

Hi Kay

My husband's route into permanent care was not a straightforward case of me deciding "OK it is time for him to go into care". He was diagnosed with PD six years ago, although (like a lot of people) looking back he had had it for some time. The dementia started with mild cognitive impairment about three years ago. Over the last year or so he has been getting worse. I only realised after he went into the home when I looked back over the last few years, how bad the last year or so had been. Then after last Christmas he deteriorated rapidly. He was delusional and psychotic, had two UTI's which made him much worse but which were treated. Unfortunately after each episode he never got back to what he was before. Eventually in the spring he became violent and more delusional, wasn't sleeping, prowling around the house all night ready to fight with the people he thought were about to attack him. I was completely worn out and came to the end of my tether. The GP arranged for him to go into a home for temporary respite to give me a break. Whilst in the home his behaviour was assessed by the staff and by our CPN. He was then transferred to a dementia assessment unit. While there he was up and down and at one point stopped eating and drinking, had pneumonia and was put on end of life care pathway. He pulled himself back from that and gained some strength and a balance was found between his PD meds and anti-psychotic medication. I had several meetings with the consultant psychiatrist, ward staff and CPN and agreed with them that I could no longer look after him at home and that he should go into care. He is now in a very good nursing home with high quality staff. He has been there for just over a month (having been in the dementia unit for three and a half months). Since going to the home he has improved in that he is very rarely agitated or frightened, he is eating and drinking well and, from being immobile, is now getting up and walking (albeit for short distances and always with staff ready to support him). The home is some distance away so I visit two or three times a week but when I do go we have some lovely times together and I stay for a good while.
His mind is not in the here and now and he talks a lot of nonsense but I can still see flashes of the man I married and of his innate good, kind personality. I miss him dreadfully but I know that the man I miss has gone for good and I could not care for the man he has become without destroying myself in the process. Before the crisis in March I was not ready to give up, but once I was forced to and I realised what caring for him had been doing to me I knew I could not do it any more. As things stand I know he is being well looked after and when I see him we have 'quality time' together. I will not pretend it is easy. I feel guilty sometimes and wonder whether I could have done things differently or done more but I try not to dwell on that and am trying to enjoy my own life now whilst always looking out for my husband and ensuring that all his needs are being met.
Sorry to have gone on so long but felt I had to try and give you the background to our story. I think I could fill a book if I were to detail all our trials and tribulations. If you want to PM me I would be happy to listen and/or give advice if I can. Only you know how much you can do and how long you can carry on.
With my very best wishes and love.
Worrals xxx
P.S. What professionals does your husband see? Do you have a CPN? Ours was and is a tower of strength.

Hi Kay
Having invited you to PM me I just realised that my account was set not to receive PMs. Have now set it to receive should you wish to message me.

Hope you are not too stressed.


Dear Worrals,

Your story of how your husband went into care is very typical and that is pretty much how my husband got there,he has had pd for 30 years and his birthday is this week, the grand age of 69.I had just rung up our consultant to see if she could visit him in a respite home when she said the time has come you can no longer keep him home even with 24 hour care as she knew I was really about to have a complete breakdown. It is hard and all you say is so true, it has taken me two years to come to terms with the changes and realise I too am entitled to some sort of life which I am about to do. I have arranged to go to some show's and been to the cinema for the first time in nearly thirty years, they are not the same very stark and unwelcoming but the film wasn't bad.
I just wish I could say that the home where he is was good care but it isn't and there is nowhere else that can cope with his complicated condition so I am trying to improve things from the inside if you se what I mean.
Everyone is so different and it a difficult time for people to decide when the time has come that you can no longer manage, like you I just don't know how I did it for so long, I know I paid out lot having acupuncture for my back pain just to manage day to day with him, I too can only visit him twice a week as he is so far away. thinking of you
best wishes

Hi Vivian

I've read lots of your posts and really admire you for your fortitude and the way you have dealt with all that life has thrown at you. Compared to you my and my husbands troubles have been of short duration and I am thankful for all the things we were able to do together before Parkinson's came into our lives.

I'm sorry to hear there are problems with your husband's home. You don't stop being a carer when the person you are caring for goes into a home. You just have to do different things for them.

It is good though that you are able to get out and do things for yourself.

Thinking of you and wishing you all the best

worrals xx

thanks to Polly,I have ordered 2 Kylie pads,also to worralsand Vivians accountsof how they have dealt with this horrible disease.I really appreciate you sharing your feelings.Its somehow comforting to realise I'm not alone.Alan used to be a taxi driver,and today while sitting in his armchair,said --The engine wont start.I wont be able to work today!!!I've just been to an ART demonstration leaving Alan with
Crossroads carer and he was very agitated.I was only out 2 hours but he thought
I'd left him.How sad!! nite,nite girls,better get some sleep while he is.

I hope you didn't have too bad a night Kay.

I too find it very supportive to hear others stories and to know that, because of their experiences, they will know something of what I am going through.


Hello Kay . I noticed that you are using Crossroads . . I think there will come a time when I might need to use them . What sort of support do they give . If needed , are they qualified or willing/able to do any personal things for the person they are sitting with . I believe they give you a few hours. Do you normally get to use the same person / people

Yes it is great that we can support others and be supported ourselves by people Parkinsons is such a difficult complex condition who understand and cope with

Hi Johnie,I have foundCrossroads very good.They mainly do a sitting service so that I can go out,or go to sleepif I'm very tiredI did have 2 free hours then its 11.50
anhour.but Now its gone onto a direct payments scheme--I get a certain amount from social sevices and can use itto pay for carersthey are alltrainedand I had an
assessment first to see what my husbands needs werei.e giving medication.I have a different agency of carers to look after him 4x's aday washing.dressing and putting on commode and tobed at night.they are all very of carers in both cases,but we have got to know them.I also have one lady who stays from 10pm until
6am twice a week so am assured of good nights sleep which is invaluableregards Kay

Hello Kay,

I am glad to hear things are getting sorted and you have some support, once you get into the system you will be able to increase the time of help more easily. You do have to get used to your home not being just that but the ladies that come into help are usually very good. We eventually had 24hour care before my husband had to go into a nursing home and it was extremely difficult to find one that could cope with his complicated drug regime and his complex condition, that is why it is an hour away from me.
I have just been away for the weekend with our son to show him where I grew up and the South Hams area, the first time I have been away for years. It was lovely to see all the old places I have fond memories of and meet up with my old school friend it has given me a taste for going again. We did visit my husband on the way down and on the way back so I didn't feel so bad about it then.
They have a new care co-ordinater so I hope things will improve, he certainly seems to have a much better idea of looking after people so I hope so.
I wish you luck and best wishes

Hi vivian and worrals
I'm 53 with pd since last nov dx that is I've had it years without wife and i have three kids with disabilities and foster two.ive got pains everywhere and try to keep going.i have two hours sleep at night bed at 4 am and up at 6. The wife says she's got to much on to be my carer and when I get bad I'm going in a home.i can't blame her but it's left me with more depression looking round he nice home and kids thinking how long before I lose it all.but I agree with you that you have to go out on trips to have some off your life back instead of sitting in front of the telly.if you've got pd you've got to be brave and the carer has to be braver longer.

dear kay it might be usefull to know that they do a sheath cathater. you will have to ask the continance nurse for advice but it might be an idea

Hello potter 64130,

I feel it must be very difficult for both you and your wife, how you manage I do not know!,your lack of sleep is not good for your pd at all, I know that we only had around four hours sleep a night for most of my husbands time at home but your body and medication needs more than that.
In a way you need to take a step back and look at the situation from the outside and then have a plan of action, perhaps then you will be able to stay at home for longer. It is so easy when everyone is tired to just exist from day to day, but sometimes it is good to take a fresh look at things and see what is available to ease the situation.
You don't say if you and your wife get a break from looking after your children, do they go to a day centre or have any other longer break, perhaps the social worker can help.
I do hope that you will be able to get something sorted as it is very sad that you are thinking your time at home is limited and you are bound to be depressed, your wife must also feel exhausted so here's hoping!
best wishes