Caring for a partner with dementia

[BlueHotel]

I have been following threads in this topic but most are about caring for elderly parents. I am caring for my partner who is 83, I am 77.

He has not yet got a diagnosis because the Memory Clinic nurses and consultant think he is depressed and suffering from high anxiety - which is true. He has had two weeks of 25mg sertraline and is on his third week of 50mg. They are going to increase the dose to 100 mg after the fourth week.

I think he is a bit less depressed although it's hard to tell. But his anxiety has actually got worse over the last couple f weeks (the team are aware of this). All his symptoms are classic dementia symptoms. He gets lost in the house and gets anxious about finding the toilet. It is a very small house with only three rooms downstairs, living/dining room, kitchen and downstairs loo. I have put a big notice on the door of the loo but he still has problems finding it, he can't remember where it is.

He also sometimes doesn't know what room he's in.

He often can't remember if he is upstairs or downstairs so is looking for the upstairs bathroom when he is downstairs.

He struggles to make himself understood, he can't find the right words. I usually know what he means though.

I am being urged by the mental health team and by the adult social care team to get out and do things for myself but I am worried about leaving him on his own (maximum 2 hours), mainly because of the toilet issue.

Can anyone relate to this?

I’m so sorry to hear this. I can’t relate directly but many here will have seen their parents go through this, and my job involves talking to couples where there is a dementia diagnosis.

Clinicians can be unwilling to make a diagnosis, which is really unhelpful, as getting the diagnosis hooks you in to the support network. Can you go back to the clinic and push? Tell them about the sign on the door for the loo, that’s not depression and anxiety. Push for a scan as part of the diagnosis, it can help map out his pathway.

You will have something like a Dementia Navigators service locally, accessed through the memory clinic or sometimes through the local council. Worth hunting them down even before a diagnosis.

Get the paperwork in place. Do you have POA for your husband? Have you both written wills? Make sure you know his passwords for everything and what accounts he has. Register with your GP as his carer. Do you have children? Are they aware, and do you live close to them?

I am so sorry this is happening, it is very tough. Do everything you can to protect yourself, take all the help you can get, and remember what he would want for you before the disease rather than what the disease might make him say or do now.

I don't have any specific advice regarding caring for a partner but my dad has just been diagnosed with dementia. This was done following at scan of his brain which was fairly conclusive. Your partner sounds worse than my Dad so I think you need to be pushing for him to have a scan. It is so hard and such a shock. At least with a diagnosis you can start to make plans about how to proceed.

Thank you for your replies.
I do have POA. We both have wills. We have separate finances, we're not married. I have always managed his finances as he's never been able to use the internet.
I think I do have to push for another scan. The one he had in January was in A&E in response to a fall, they weren't look for signs of dementia, only signs of another TIA.
I am registered as a carer with GP and all the services are holding hands, he has an adult social care worker as well as the mental health team.
We have one daughter each, he is estranged from his but his ex-wife will have told her. She lives abroad. My daughter is aware but doesn't live close by.
I will look up Dementia Navigators, never heard of it.

I am just about to leave him alone, I am going to a carers' get together, just for a couple of hours. He supports this, he wants me to go out, he just gets anxious about the loo but I think he will find it ok. He relies too much on me to show him when I'm around.

I will report back. I very much value this support.

I recently ran a research project looking at what people found most valuable after diagnosis and overwhelmingly they said local dementia carers support groups - Alzheimers Cafes, the sort of thing you are going to, carers groups attached to day centres etc. I'm so pleased you've found one; if this one isn't right for you keep searching until you find your tribe.

Your local council will be funding a charity or service designed to look after local carers - ours is called Action for Carers - and they can point you in the direction of support. Ask for a carer's assessment (from your GP or ask about it at the carer's meet-up) - you may be able to access someone to come and sit with your husband while you go out. Also ask about Attendance Allowance and a Blue Badge. Allow plenty of time for the systems to grind into action, so ask before you are in need!

I'm pleased to say that I've done a lot of what you suggest. We've had a joint assessment from the SW team and I can phone the SW up any time. We've had some handrails and others aids put in from the Occupational Therapy SW. I've got the higher rate attendance allowance. I'm doing the application for a Blue Badge.

He was ok while I was out, found the loo ok. But he was full of worries. He is having his last remaining tooth out this afternoon and he has always been terrified of dentists. He keeps checking that I am going to take him - which of course I am.

So my main concern is pushing for a brain scan and a diagnosis, i will follow this up.

Thanks again for the input, I appreciate it.

They aren't going to do another scan, there's a long waiting list. I phoned the MH nurse and had to push her to tell me what the consultant said at their meeting. He thinks it's vascular dementia and they still want to stick with the antidepressants.
The adult care social worker has reassured me that I can have a carer coming in and/or respite care. They want to keep people in their home as long as possible. But this is my house and I will probably have to insist on a care home at some point. I am not going to deal with incontinence. I know many people do make sacrifices to care for their OHs but I know that I can't do it, I haven't got the patience, the stamina or, to be honest, the love.
I care about him of course, but we got together originally (20 years ago) to share an exciting and adventurous lifestyle, there was no "falling in love". I was divorced, he was separated from his wife, he's still actually married to her.