Hello. I am new to Talking point

[MerryB]

Hello, my husband was diagnosed with Alzheimer's dementia early this year. I gave u work last year as my family and I realised my husband was not coping well at home alone. Although this brought big financial implications we are happy and cope relatively well on a very reduced income.
I worked for years as a healthcare professional and had a lot of contact with people living with dementia, however the past year and a half has opened me up to emotions I did not anticipate. The love for my husband has changed to a much more tender love and very protective.
I experience feelings of frustration, anger, hopelessness, love, love and more love
I am frightened of forgetting I am his wife and not his mother but my role sometimes feels like that. I am afraid of over protecting him and dis-enabling him from maintaining skills he still has, though he does not seem to have many daily skills left.
My main frustration is that he does not realise he has a memory condition and refuses to accept that he has been diagnosed with Alzheimer's. His memory retention is approx 30 seconds to 1-2 minutes. If you did not know him though he could fool you. He has started 'remembering' seeing the same people whenever we go out doing the same things, wearing the same things etc. He tells wonderful stories to people which now I let go as it is his reality not mine The only time I may try to change his recall of a situation is when it involves my or our history. I think it is important to preserve the reality of our history as long as possible.
How do I realise early stage dementia has changed to middle stage?
How often should I seek advice from my GP?
Do we just carry on till something happens that I don't understand or can't cope with?
You would think I should know this but this is so different and not the way we anticipated spending our retirement years.

 

[Grannie G]

Welcome to Dementia Talking Point @MerryB

However experienced and compassionate you were as a healthcare professional your care was objective. Now with your husband it is much more personal.

Even so, you will know what to do when the time is right.

GP`s are not the most helpful for people with dementia because really there is little they can do unless medication is required. Now with covid in the mix, they are even less available.

It won't make much difference knowing what stage your husband is at either because really all he needs is love, patience and understanding.

It sounds to me as if you are doing everything right.

The following link has helped a lot of people as a very good guide, even if they are not able to follow it to the letter.

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

I hope it helps.

 

[MartinWL]

What you describe is very typical of the stories you will read here.

I would say as well as carrying on do plan ahead. It must be too late for powers of attorney if his memory is as bad as you tell us. So apply for deputyship now. Think about how it is going to get worse and how you are going to arrange help so that you do not get exhausted. I am no marriage counsellor at all but relationships do change with dementia and develop into a carer relationship - sadly the virile youth you married is no more. It is hard I know but to do your best for him you need to think about all the practical stuff. Browsing here will give you a lot of knowledge.

 

[Bunpoots]

Someone only needs to understand what Power do Attorney is for to be able to apply for it. They don’t have to remember so I’d say, if you haven’t already done it @MerryB then get it done as soon as possible.

Deputyship is much more expensive and onerous..

 

[MartinWL]

Someone only needs to understand what Power do Attorney is for to be able to apply for it. They don’t have to remember so I’d say, if you haven’t already done it @MerryB then get it done as soon as possible.

Deputyship is much more expensive and onerous..

Yes and no. They have to remember the understanding of what it is long enough to weigh up the pros and cons of things like joint and several attorneys, substitute attorneys etc. In my case it was simple as I am the only attorney and there were no other candidates but often it isn't that simple.

 

[Shedrech]

hello @MerryB
a warm welcome to DTP

it's tough for you that unfortunately your husband is unlikely to grasp the diagnosis ... he very much lives in the day and his brain has been affected so that he will not understand that there is anything wrong with him

that doesn't mean that he no longer has the capacity to make decisions ... with regards to arranging LPAs, it is down to the certificate provider to chat with him and sign if they are content at the time the LPAs are done (we can give opinions here, but none of us know your husband) ... the certificate provider can be a friend who has known your husband for some years
have a look here

Make, register or end a lasting power of attorney

How to make a lasting power of attorney (LPA): starting an application online, choosing an attorney, certifying a copy, changing an LPA.

www.gov.uk

take each day as it comes .... the GP is there for any illness, as for anyone, and should your husband become anxious, depressed or aggressive there are meds that may help, and for you as well, otherwise I'm afraid there will probably be little monitoring by them ... maybe send them an update every few months so you keep them up to date of any changes and concerns, and how you are coping

do look into having an assessment of your husband's care needs by your Local Authority Adult Services, and a carer's assessment for you ... this will at least flag him up and you may be able to get some day care and respite

Admiral Nurses are there to support carers, so give them a call to chat
www.dementiauk.org

 

[Merriel]

Hello, my husband was diagnosed with Alzheimer's dementia early this year. I gave u work last year as my family and I realised my husband was not coping well at home alone. Although this brought big financial implications we are happy and cope relatively well on a very reduced income.
I worked for years as a healthcare professional and had a lot of contact with people living with dementia, however the past year and a half has opened me up to emotions I did not anticipate. The love for my husband has changed to a much more tender love and very protective.
I experience feelings of frustration, anger, hopelessness, love, love and more love
I am frightened of forgetting I am his wife and not his mother but my role sometimes feels like that. I am afraid of over protecting him and dis-enabling him from maintaining skills he still has, though he does not seem to have many daily skills left.
My main frustration is that he does not realise he has a memory condition and refuses to accept that he has been diagnosed with Alzheimer's. His memory retention is approx 30 seconds to 1-2 minutes. If you did not know him though he could fool you. He has started 'remembering' seeing the same people whenever we go out doing the same things, wearing the same things etc. He tells wonderful stories to people which now I let go as it is his reality not mine The only time I may try to change his recall of a situation is when it involves my or our history. I think it is important to preserve the reality of our history as long as possible.
How do I realise early stage dementia has changed to middle stage?
How often should I seek advice from my GP?
Do we just carry on till something happens that I don't understand or can't cope with?
You would think I should know this but this is so different and not the way we anticipated spending our retirement years.

I read your post and thought it could have been me writing it. My beloved husband is in the 7th year of having been diagnosed with Alzheimers. Even now he could fool people for a short time that he has nothing wrong with him. He makes up stories which are pure imagination but strangers would believe him. He refuses to accept help in any way and refuses to see a Doctor or Dentist or indeed anyone. He loses his temper easily and he would be devastated if he realised how much he hurts me. Sometimes it's difficult beyond belief but then I see a glimpse of how things used to be. I try to find something positive in every day we have together and we do still laugh and I'm grateful for these precious moments. My heart goes out to you.

 

[Cat27]

Welcome to TP @Merriel
Please keep posting as you’ll get lots of support here.

 

[Merriel]

My husband and I are now in our 8th year of Alzheimers and I guess we are doing as well as we can. We do now have a problem in that he is a bit unstable on his feet and I'm concerned that he may fall down the stairs as he wanders during the night. He has already had one nasty fall which required hospital treatment. I really think that a bungalow would enable me to keep him at home for as long as possible but he absolutely refuses to even look at them. I can understand his reluctance to move as we both love where we are, even though the house is now far too big for just the two of us and I am starting to find it difficult to manage on my own.
I don't know if we have passed the point when moving would be in his best interest and I would be grateful for any advice.

 

[Bunpoots]

Hi @Merriel welcome from me too

Regarding moving to a bungalow - I found it much easier to cope with my dad in his bungalow than I did when helping dad look after mum in their house.
Sadly sooner or later your husband is likely to stop recognising your home so I think you should do what you feel is best. Stairs did become a major problem with my mum and I'm sure, had dad lived in a house with stairs, he would have had to move into a carehome sooner than he did.

 

[Merriel]

Thanks for that. It's so difficult isn't it. I just want him to be happy and hate the idea of forcing him to do something he doesn't want.

 

[Shedrech]

hi @Merriel
I do understand you wanting your husband to be happy ... though, when dementia is present maybe the concept of Happy has to change somewhat ... and rather than 'forcing' him think that you are 'enabling' him as the default to any choice/change becomes 'no' even when it's more sensible to make the change/choice

you and your needs also count equally ... a move may be challenging for you in the short term ... maybe think long term, what makes life easier for you means that you are more relaxed, maybe have more time, and are not worrying so much over eg maintenance, cleaning, gardening ... also, you won't be having to think of a move in the much longer term on your own

what makes it easier for you as you, and you caring for your husband

 

[Merriel]

Thank you so much for your insight. I'm very grateful and it's a good feeling to know there are people who understand.