First steps

[wizzler]

Feeling helpless
Df has diabetes and has kidney failure. He goes to dialysis 3 times a week

He is 90, very frail and looked after by Dm .

We started to notice periodic bouts of confusion at xmas and it's worsening fast.

We applied for the age attendance allowance last week

Today he was so confused that Dm called the doctor and they saw him straight away. He couldn't complete any of the simple tasks ( name an object , draw a clock face) and has been referred to the memory clinic, blood tests and a brain scan

I'm so sad. This is so cruel. I'm worried that his physical challenges will prove to be overwhelming as his confusion worsens.

I have power of attorney I think ( need to drag out the forms and check)

Sadly so many on this board are in similar situations.. If you have any advice or tips I'd be really grateful.

If it’s suddenly got worse, have they checked him for infections ?

I was thinking UTI/renal infection. Sorry to hear this OP hand hold

Thanks for the responses and the hand hold. I think they do a fair number of checks at dialysis each week so would have picked up an infection there.

He has been physically frail for many years, and the nhs have been amazingly supportive . My dm has promised him she will look after him at home for as long as possible but this may be the final straw.

Sad for both of them.

They look to me for guidance and I feel totally out of my depth on this one. I guess we just wait for the results of the memory clinic

Thought I might use this thread to log things, and hope it's useful for the next person in my shoes
Dr arranged for blood tests while df was at dialysis. Phoned to say they have all results. Almost certain it is dementia. We've let the dialysis clinic know, and we wait to hear what happens next

Not much progress. Haven't heard from memory clinic yet
I've been through some of the utility bills with my mum and we have added me to them as a kind of account manager. Bank accounts ( at least the main ones) are in joint names with my mum.
Poor dad is exhausted and sleeps in his chair most of the time. Has regular episodes of confusion when he gets really frustrated but we seem to be managing so far

Is there anything else I should be doing?

I am sorry you are all going through this it is hard.

We are newish to the situation too so not sure I can help a lot.

Mum has had to go into a home, she was widowed so had been living at home alone. I had hoped I would be able to look after her but it is a 24/7 two person job as she can now no longer walk or stand.

On a positive note she is happy in her own world but it is heartbreaking to see. We have accepted live is different now and things can change in moments, we go with the flow with Mum and step into her world which does help her. She thought she was teaching a class of children last time I visited her and it was her lunchbreak.

Practically we have power of attorney health and finance. She does get attendance allowance at full rate but otherwise is self funding - until the money runs out...

Is there anything else I should be doing?

Sounds like you're doing some really good, practical things already.

Some things that might help are putting your DM in touch with a local Carer's Hub where she can get some support.

I'd also see about getting her a Carer's Assessmentt* as she may get some help with looking after your DF. I'd try to be there when she has the Assessment though.

Another thing that might help is getting the pharmacy to deliver his medication in a Dosette Box. Your DMs too.

Filling in the Herbert Protocol in case he ever wonders will be helpful as well. It's just a form that you fill in with details of where they like to go, where's the nearest bus stop and where the buses go. The kind of things it's hard to think of if he's missing but will speed up a search. Just Google the name of their local Police Force and Herbert Protocol.

Registering them as priority customer with their Utility Suppliers should help in case there's ever a break in service. They'll help to try and connect them as quickly as possible. Do they also get a reduction on their Council Tax?

I'll probably think of some things later but one last suggestion for now is popping over to the Elderly Care Section. It's busier than this section and there's also a long running support thread

Knew I'd think of something else.

The This is me form should be helpful for any carers or in case he ever has to go into hospital

Thanks so much @PritiPatelsMaker there are some really helpful ideas there.

I've applied with my mum for the Attendance Allowance on dads behalfWe've had a response to say if she is applying on his behalf she needs to send supporting evidence that he is not capable of doing it himself. Does anyone in MN land know if this is just a confirmation from us or does it need a letter from gp ? He goes to dialysis clinic 3 times a week... would a letter from them be acceptable?

He is doing ok and I was glad to get him through the hot weather ok. Mum just has a burner phone .. I'm sad to see how she is prevented from applying for things because she doesn't have internet access

She tried for example to renew blue badge using phone or face to face. It was such a palava. She doesn't like asking me if she can do things independently. So many people must be experiencing this discrimination

I've just found this thread and am hoping someone might be able to help. My mum started dialysis 2 months ago but has gone down hill in terms of being very frail, being confused and seeing things that aren't there. An mri scan showed vascular damage in her brain and the doctors think dialysis may be worsening this. They are now trying to work out if she has vascular dementia. Does anyone have any experience of dialysis worsening this?

@Kevintheelf80 you need to start your own thread to get responses to your specific question. I’m sorry to hear how tough things are for you.

I believe there is a strong link between vascular diseases and chronic kidney disease though.