At my wits end

[sqeaker]

i care for my husbans who has Alzheimers, the last year he has got worse, he has had a urine infection for 5 weeks and had 3 lots of antibiotics, the one he is on now hopefully will work. But he goes to the toilet and does not make it to the seat or try to he stands in the doorway and wee.s

I clean up the bathroom i have a jug he uses now but i cant go out at all as i do not know where he will go, i said to him yesterday im just in the garden shout me if you need to go, as i hold the jug for him, i came in 2 mins later to see him weeing on the table. He gets cross at me at night when he wakes and calls me names as im trying to help him go it the pot, to save me cleaning the bathroom, he holds on to his troucers and pushes me away, so then he just goes in the pjs.

I know he loves me as he tells me, but i got so upset the other night and cried for ages he never seemed to notice and didnt cuddle me he just went to sleep. so different from the hubby i knew, he was so getle and would never swear at me and always cuddle me if i was upset. I know its not him but i cant help but get upset.

if i hurt he never notices or i feel poorly, im so tired as i wake up during the night when he does so as to make sure he doesnt wee everywhere, but i cant catch up as i have to be awake to help him or if i dont im cleaning up.

This is such an awful disease, we also found out as well as being checked every 4 months on his bladder cancer the doctor thinks there is some cancer in his prostate too. he is my soul mate waht can i do im scared.

 

[karaokePete]

Hello @sqeaker, that sounds very rough on you. Your husband may get agitated when you try to help because he is confused, scared and embarrassed. If this mainly happens at night he may not recognise you in his confusion and panic so he struggles against a stranger trying to interfere with him. This may sound silly, but it is a good idea to introduce yourself and say that you are helping and what you are going to do while making sure to try to approach from a position where you can be seen. A few nights ago my own wife woke me to ask me who I was and had she needed help with the toilet in that confusion she may not have reacted well to me laying my hands on her.

Hopefully things will settle when the infection is fully controlled, however, have you sought help from Social Services or even an incontinence nurse at your local surgery. I think you should seek help. There is a limit to what we can do on our own, no matter how much we love the person.

Do keep posting about how you get on.

 

[margherita]

You can't go on coping with your OH for a long time without help.
You sound so lonely and tired

 

[Norfolk Cherry]

Hello @squeaker. I would urge you to take the advice given by others above. I phoned social services as I was worried I wasn't able to care for my mum's needs properly when she was more capable than your husband is now. They have helped me so much, we have carers to help us. She has respite care. I don't feel alone. You need to use the phrase "at risk" Explain his diagnosis and say you are concerned he is at risk as he pushes you away when you try to help. You would like an assessment by a social worker. Your husband's illness will make him say he doesn't need this help, but from now on you must do what he needs, and what you need, not what he wants. All the best and take care.

 

[Bunpoots]

Hello squeaker. I have recently started looking into getting help from social services to look after my dad. It was the onset of incontinence that forced me to take this decision. Dad is so confused now and he has no idea that he is weeing everywhere. He has got to the stage now where he doesn't always recognise the need to go so I've decided to bring in carers to make sure he wears his pull-ups which will hopefully reduce the wash load drastically.

I don't live with my dad so I do get a break from him from time to time, and I get to sleep - which I wouldn't if I was living with him. Without this I couldn't cope so please consider getting help. You need a break.

Dad gets his pull-ups from the incontinence service so we don't have to pay for them now (it was costing a fortune!) and they do work very well when he remembers to put them on. At first he was very resistant but now he mostly accepts them so I think at some level he realises he's more comfortable because of them. And I have less washing.

I had my carer's assessment a couple of weeks ago and was awarded £150 to spend on whatever treat I wanted "in recognition of the work you do as a carer" according to the lady on the other end of the phone. It only took a few minutes over the phone and I was also awarded £650 for "respite" which I phone up for when I need it and they will arrange for my dad. I feel better knowing that is there to fall back on.

I know I'm not losing my soulmate in the same way as you are but I am losing my dad bit by bit and I find it painful to think about how he used to be, so right now I don't - I just deal with the present situation as best I can. I'll remember the good times after this is all over.

I'm sure you'll find your own way through this. We're all here for you.

Hate dementia!!

 

[Shedrech]

hi @sqeaker
might you try swapping all your husband's underwear for pullups (not a cheap option I appreciate) so that he has no choice but to wear them, and use them at night too, so at least when he is caught short they may help a times, and he gets used to them - though not so helpful the times he pulls them down

 

[kindred]

This is so hard, all my sympathy. It is true, it is the horrors of incontinence plus the lack of sleep that combines to end our period of caring for our loved ones. We are tried beyond the limit. I was forced to put my OH in residential care because we had an awful fall, accident and emergency and the hospital said, this ends here and wrote a best interests statement against me looking after him. It took three of them to manage him and I was managing completely alone. I'm posting to say I know it takes courage and above all energy to make even the slightest change to our situations, I know that. In my case, OH is happy in his nursing home and I am with him three or four hours each day. It is a more humane and sustainable situation. All my thoughts to you. Thank you for posting.

 

[sqeaker]

Hello squeaker. I have recently started looking into getting help from social services to look after my dad. It was the onset of incontinence that forced me to take this decision. Dad is so confused now and he has no idea that he is weeing everywhere. He has got to the stage now where he doesn't always recognise the need to go so I've decided to bring in carers to make sure he wears his pull-ups which will hopefully reduce the wash load drastically.

I don't live with my dad so I do get a break from him from time to time, and I get to sleep - which I wouldn't if I was living with him. Without this I couldn't cope so please consider getting help. You need a break.

Dad gets his pull-ups from the incontinence service so we don't have to pay for them now (it was costing a fortune!) and they do work very well when he remembers to put them on. At first he was very resistant but now he mostly accepts them so I think at some level he realises he's more comfortable because of them. And I have less washing.

I had my carer's assessment a couple of weeks ago and was awarded £150 to spend on whatever treat I wanted "in recognition of the work you do as a carer" according to the lady on the other end of the phone. It only took a few minutes over the phone and I was also awarded £650 for "respite" which I phone up for when I need it and they will arrange for my dad. I feel better knowing that is there to fall back on.

I know I'm not losing my soulmate in the same way as you are but I am losing my dad bit by bit and I find it painful to think about how he used to be, so right now I don't - I just deal with the present situation as best I can. I'll remember the good times after this is all over.

I'm sure you'll find your own way through this. We're all here for you.

Hate dementia!!

Thank ypou so much for your help and advice i did noot realise you could get money to help with respite, your right i get pull up pants slthough he wears them thsy dont get wet much it in case he has an accident as he did once. they are not cheap. I wonder if our Socoal Services would award that to me i hope.
Its awful i know its not your soul mate but he is your dad and thats awful. i hope you keep going and remember your dad at his best, lovely to hear from you .