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Dementia and Alzheimer's

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My partner has dementia

11 replies

BlueHotel · 18/12/2021 13:09

I don't expect any answers, but a bit of handholding or shared experience would be nice. Sorry it's long but there are paragraphs!

I have suddenly become a carer. Well I suppose it's been coming on for a while but now it's confirmed. He hasn't had a diagnosis yet, but the GP has done a full assessment (physically he's ok) and has referred him to the memory clinic and advised him to self refer to an NHS counselling service for his severe anxiety. I've done that for him and he has an appointment for a triage consultation on 30th December.

I'm quite worried about that because he tends to downplay his condition to everyone except me. He did it with his first phone consultation with the GP, luckily she asked to speak to me. To me he says he's useless, worthless, a burden to everyone, can't he be put away somewhere. He can't be reassured about anything - he is convinced "they" are going to suggest brain surgery, which he will refuse.

He has lost his whole world. He is 83 and up until a year ago was still working physically in the house and garden and on our boat. The mental symptoms started alongside his failing strength, so for instance he kept losing tools, getting disorientated and confused, forgetting what he'd just done or was planning to do.

I have always thought he was on the autistic spectrum (sorry if this is not the correct terminology). He is an engineer, very black and white thinking, no sense of humour, difficulty with empathy, face blindness, needs strict routines. It runs in his family. He has managed this very well and had a successful working life (relationships not so much). Now it seems he can't access those coping strategies so he gets very agitated if anything disrupts his routines. For example, he has to get up at exactly the same time every day and although he doesn't need me to get up at the same time, he insists on knowing when I will get up. So I have agreed to him bringing me a coffee at 8 every day, then it is ok for me to lie in if I want to. But he has to do the coffee routine. We have had men working on the outside of the property - that agitates him. If the bin men are a bit late he keeps going outside to check.

We have been together for about 22 years and he gave me a wonderful life, travelling round Europe in our own boats, and eventually buying a house in France but continuing to go fishing and cruising. All that is over now and it is my turn to step up to the plate.

But he hates being so dependent on me and beats himself up about how much "work" I am doing. We have just sold up in France and moved back to UK to live in a house I own and had rented out. The last couple of years have been very difficult, covid, Brexit ... and I have had to do masses of complicated administration in both countries. But although this is time consuming, frustrating at times and tedious it is something I'm good at and have always done. Even before he was ill he "couldn't" send a text or use the internet. I am aware that a lot of this I have allowed because he was always so fully involved in the more physical work - it seemed a fair enough division of labour.

He used to cook sometimes, especially for guests, now he finds it too difficult and confusing. He is so anxious he's reluctant to do the simplest DIY job like hanging pictures, and then of course he feels bad about it.

I am slowly trying to get some support. What he really needs is someone who will just listen to him talking about the past and to meet other people. He's very isolated. I think I've found a resource but of course everything takes time especially at this time of year.

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SpanielsAreMyLife · 18/12/2021 13:14

As someone who worked in care for many years, and had many dementia patients.... my honest advice is to focus equally on what YOU are going to need. Which will be regular respite. I saw so many carers on their knees with physical exhaustion and mental fatigue.

This is going to be a hard journey for both of you - and you need to be really pro-active to get the help and support you both are going to need. And honestly, when it gets to the point where he's not safe at home, find a good care home.

I'm so sorry that you're both going through this Flowers

Beamur · 18/12/2021 13:17

I've cared for a loved one with dementia and it's hard. But, there's a lot of assistive technology that can help. My suggestion would be to introduce things like that before you need them. Dementia makes it so much more difficult to adapt to changes. Get help in with gardening, cleaning etc if you can afford it so you're not run ragged doing everything.
Make sure wills and power of attorney are in order. If it's not too upsetting, talk to him about his preferences for the future.
You can live and be well with memory impairment for some time. Pretending it's not happening doesn't help with that.
Remember to look after yourself too. Talk about respite care and having help with aspects of personal care when needed. You will be able to care better and longer if you don't try and do it all.

BlueHotel · 18/12/2021 13:39

Thank you for responding so quickly. I know what you're both saying is true. I have got to start looking after myself. Just a difficult transition. We have a little garden here and once the weather improves I think he might enjoy pottering. He's used to being outside most of the time. The most difficult thing is trying to keep a bit of positivity.

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Beamur · 18/12/2021 13:43

Yes, it feels like such a bleak diagnosis. But it varies from person to person as to how it affects them. It was my Mum who I cared for and she was a perpetual ray of sunshine. She lived in the moment and mostly that moment was good, but even when it wasn't she couldn't hold the concept of how long something had been that way. The downside of this was risk and pain management! But she was never difficult and was very stoical. There's still joy in many everyday things.

Backstreetsbackalrightdadada · 18/12/2021 13:45

If you have any funds to do so, definitely get carer in - but a swish one and say they’re helping you (if he’s being too proud). Call them a housekeeper (or else a physio) or anything but you need care too. Being a carer is a tough and extreme job - in terms of hours, stress and specialism. It’s why people are paid (not enough) to do it. When family try and it’s just you doing it alone it’s just too awful. I also know you need to spend this time with him as quality time, not working (and just keeping your head above water). Really REALLY sending you love and support from across the internet.

And:

  1. Lots of dementia care (if you have the money) is amazing and quite techie, if he likes that.
  2. If he continues to reject the idea of carers,
speak to a support group about what you can do. Hospices are actually an amazing source of knowledge on carers in your community (basically like the Wikipedia of care!) - doesn’t seem an obvious place to ask but do try.
Backstreetsbackalrightdadada · 18/12/2021 13:48

just a difficult transition - it really is!!! You almost need to draw up a plan away from him, tell him why these boundaries work, and have people there to support you when he goes beyond the agreed boundaries.

I wonder if he’d be won over by the idea of someone in the house doing all the work (really him and house) while he gets to spend time with you.

BlueHotel · 25/12/2021 10:02

An update if anyone is still listening. He has had a flurry of medical appointments which have produced a new level of stress, unrelated to the dementia. Christmas itself has been/is upsetting him greatly, in fact he's still in bed now. So really the same old same old.

After the holidays I am going to have a renewed attempt to get some support and follow up on some of the things I've heard about. I'm struggling a bit with the Attendance Allowance form, which I've been advised to do, I'll get back onto that.

Now I would like to ask for book recommendations. I've looked on Amazon but can't decide. Something to help me manage his anxiety and depression really.

Good wishes to everyone for the new year.

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Purplewithred · 25/12/2021 10:10

I've just completed a research project on support in the early years after diagnosis and the two strong messages from the people I spoke to are a) find yourself a support group - Alzheimers Cafe, local Day Centre, Carer's group, whatever - they are brilliant for both advice/information and empathy. You may need to 'shop around' to find what works for you (ie might be an evening zoom group/might be somewhere your DH can go with you etc)
b) when he has the diagnosis you should be introduced to a Dementia Navigator (or other similar job title) who is the person whose job is to recommend services etc. Even if you don't want to talk to them yet grab their name/number/contact details and call them every couple of months to check in.

Attendance Allowance form - Citizens Advice will help you complete that. Think about a Blue Badge too, he may not qualify yet but it's worth a try.

Also ask for a Carer's Assessment, get yourself registered with his GP as his carer, join your local Carer's Association (check council website).

Flowers
BlueHotel · 25/12/2021 11:09

Thank you Purplewithred I will follow your advice. Mumsnet itself is proving an excellent resource!

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Bonbon21 · 25/12/2021 11:15

Age uk are a great help with any forms you have to compkete for allowances. They know the phraseology that works!!
Take care of you. x

BlueHotel · 25/12/2021 12:31

I have Age UK on my radar and will pursue for help with the allowances. I've been housebound for a few weeks with a nasty (non covid) cold but I'm feeling a lot better now and ready for action.

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