What stage is this?

[Kcbbrw]

Hi. My husband was diagnosed with alzheimers 2 years ago. He sort of accepts he has alzheimers but constantly says it's just forgetfulness & is adamant he isn't going to any clubs or cafes to interact with others. He was 63 when diagnosed & I'm in my 50's. I feel I'm out on a limb a little due to this
Up until now we've sort of muddled through & got on with things but lately I feel so drained with the constant negative comments, answers & questions from my husband. It's that sort of daily feeling if I say white, he'll say black.
Yesterday I asked what he'd like for dinner & he genuinely thought he'd already had dinner. Can anybody advise me on what stage this could be?
Thank you for any advice.

 

[maggie6445]

@Kcbbrw , could you find a dementia cafe or activity and arrange with the group to just drop in for coffee? Don't tell your husband where you are going, make it seem like it's unarranged

You would find the support of benefit and your husband would see that theses groups are not just old people sitting blankly and drooling.

We have a lot of fun at the coffee club, games morning and singing groups and none would have been anything we would have done pre dementia!

These groups are a lifeline for me,gives me a chance to chat to others, while OH chats to either volunteers or other men. Can't recommend highly enough. Everyone understands the limitations of my OH and accepts him.

You'll make new friends, we even socialise outside of these groups. Going to the local park on Sunday for a free 6070/80 music in the park event.

Please, give these groups a try.

 

[Alisongs]

Hi. My husband was diagnosed with alzheimers 2 years ago. He sort of accepts he has alzheimers but constantly says it's just forgetfulness & is adamant he isn't going to any clubs or cafes to interact with others. He was 63 when diagnosed & I'm in my 50's. I feel I'm out on a limb a little due to this
Up until now we've sort of muddled through & got on with things but lately I feel so drained with the constant negative comments, answers & questions from my husband. It's that sort of daily feeling if I say white, he'll say black.
Yesterday I asked what he'd like for dinner & he genuinely thought he'd already had dinner. Can anybody advise me on what stage this could be?
Thank you for any advice.

Difficult to know what stage someone is at without full observation! You're (unfortunately) the best expert, specialist, advocate and carer!
I'm 65, husband 67. Together for over 25 years. He has lifelong Type 1 diabetes, and Parkinsons that was undiagnosed for over 20 years as all the medical bods confused it with diabetic complications. Diagnosis as we went into Lockdown and not followed up until all restrictions eased..... We were never warned about Parkinsons dementia. We married 2 years ago so he could satisfy himself I'd be financially and legally secure if he died. He'd been awful in Lockdown, I put it down to stress, being unwell, and his usual risk aversion ramping up. 9 months ago, dementia diagnosis. I'd pushed for memory clinic referral. Noone warns you what dementia might bring either! Public perception is that Parkinsons = just shakes and freezing and Dementia = gradual loss of all memory. Why do medical bods not give more signposts and possible outcomes? If you had information freely given, you could have not just Plan A but A to Z alternatives! Husband is now moderately severe. 9 months after diagnosis. The decline is too fast for us to take it all in and deal with it! I had to decline responsibility for his medical care to get him into hospital. Turns out, not legally obliged to care, but social services are. Turns out if he can't calculate and carry out jabs and appropriate meals to keep himself alive, district nurse and or NHS continuing care shold be called in. Diabetic nurses knew I was doing it all. They did nothing. Diabetes consultant wrote a letter about concerns 9 months ago. It wasn't sent to GP until February..... Nor was I rung about it until husband already in hospital as I couldn't get him to jab or eat appropriately or accept my help any more. Defiance appears to be part of the dementia picture. The authorities don't seem to want to tell you anything once you're written off as incurable. Two years married, 9 months from diagnosis to moderately severe dementia, he has so far refused LPOAs and Wills. I'm getting a solicitor in as soon as he's home. No choice. Get it done. If he won't, or lacks capacity, I will go the Court of Protection guardianship route. All supposed medical, financial and social routes for his care are predicated on victims in their 80s, in their final home, with pensions and a set shared household routine and budget and savings and lots of children to help. Any other scenario and the spouse suffers in favour of paying for the residential care. You can stay in your house but if you downsize to somewhere suitable, half the profit gets taken. Mutual savings are halved. Victims state pension is swallowed up. I'm not old enough for state pension, my private pension started this month. He's only been retired a year.....Sorry I'm venting..... The authorities are useless if you don't fit their mould and won't put up and shut up. And you get lots of misinformation, disinformation, mistakes and laws broken on top of it. Husband won't go near any dementia friendly activities and is conscious he's a lot younger than most, shakes, drools and can't speak or think or move independently when stressed. He has a degree in politics and helped build the Lotus James Bond stunt cars, and helped develop the pre production De Lorean (Back to the Future) car. He remembers what he was capable of, and resents the undignified, simple activities he's offered. I am going to try to get him to an over 50s weekly social in a cafe, and just going out on the local bus, getting of at a cafe or pub if he feels up to it. ( We live in a tourist holiday area with lovely scenery and things to do). Emphasising his dementia? No thanks

 

[Izzy]

Hi. My husband was diagnosed with alzheimers 2 years ago. He sort of accepts he has alzheimers but constantly says it's just forgetfulness & is adamant he isn't going to any clubs or cafes to interact with others. He was 63 when diagnosed & I'm in my 50's. I feel I'm out on a limb a little due to this
Up until now we've sort of muddled through & got on with things but lately I feel so drained with the constant negative comments, answers & questions from my husband. It's that sort of daily feeling if I say white, he'll say black.
Yesterday I asked what he'd like for dinner & he genuinely thought he'd already had dinner. Can anybody advise me on what stage this could be?
Thank you for any advice.

I’m sorry your husband isn’t accepting his situation. It must be really hard for you and no wonder you are feeling drained.

It’s really difficult to say what stage a person is at. I used to find my husband seemed to fit in more that one description of stages of dementia. You can find a variety of different descriptions on the internet but this one may be of interest to you -

The progression, signs and stages of dementia

Dementia is progressive. This means signs and symptoms may be relatively mild at first but they get worse with time. Dementia affects everyone differently, however it can be helpful to think of dementia progressing in 'three stages'.

www.alzheimers.org.uk

 

[Sunshine11!]

I wanted to know which stage Mum was at constantly, but the more I was with her, I felt like Izzie, that she fitted in more than one. The progression information was really useful though.

 

[SherwoodSue]

Isn’t it strange? I am convinced in the logic that (other than the procedural stuff LPA ,AA and wills etc) taking each day as it comes is the way to go. So hard though not to peer into the future. I keep reading five years average life expectancy with vascular dementia and here we are four years in. Mum no longer mum, but still washes her face and gets dressed each morning.
What does the future hold? How soon will things change ? If we knew which stage we were in could we brace ourselves for the next ?

I see why you are asking

 

[MichelleDW]

Hi. My husband was diagnosed with alzheimers 2 years ago. He sort of accepts he has alzheimers but constantly says it's just forgetfulness & is adamant he isn't going to any clubs or cafes to interact with others. He was 63 when diagnosed & I'm in my 50's. I feel I'm out on a limb a little due to this
Up until now we've sort of muddled through & got on with things but lately I feel so drained with the constant negative comments, answers & questions from my husband. It's that sort of daily feeling if I say white, he'll say black.
Yesterday I asked what he'd like for dinner & he genuinely thought he'd already had dinner. Can anybody advise me on what stage this could be?
Thank you for any advice.

Try to find a coffee club or something locally. We managed to find a local charity run place near us and its been my lifeline. Mum hated the main place as, in her words, it was sitting in chairs round a big room but the one we go to is in a smaller place and I feel its a bit like sitting in someone's kitchen having a chat. She stays there for 4 hours and has lunch and they do activities or just listen to music and chat and she loves it. They call it a memory club but I know they do a gentleman's day as well. There must be more places like this. We're near Maldon in Essex.

 

[maisiecat]

I also find it impossible to stage my husband's dementias although I can tell more which one is dominant. Parkinsons dementia he still feels he can rule the world and has grandiose schemes but can't find words. Vascular dementia has taken the last 10 years of memory. One causes him to be very aggressive at night.
It seems to me its more day to day, much like his Parkinsons, a row of good days will often be followed by some really bad days.
I don't look to the future anymore I find the present is bleak enough. He thinks he will live another 20 years and thats why he doesn't want to stay in the Nursing home. I tend to deal with the week we are in and not think further on.

 

[Rainfalls]

I found it difficult to pinpoint my mums stage over the years, as she never really fits exactly into any of stages, so more a rough guide. She had dementia 7 years, slow progression, last GP appointment I asked and he said he prefers to use Clinical Frailty Scale and scored her a 6 which he said was Moderately Severe which I agree with, approximately stage 6 out of 7 stage model. He said its a Marathon not a Sprint. Only certainty really is she will get worse

 

[Kcbbrw]

Try to find a coffee club or something locally. We managed to find a local charity run place near us and its been my lifeline. Mum hated the main place as, in her words, it was sitting in chairs round a big room but the one we go to is in a smaller place and I feel its a bit like sitting in someone's kitchen having a chat. She stays there for 4 hours and has lunch and they do activities or just listen to music and chat and she loves it. They call it a memory club but I know they do a gentleman's day as well. There must be more places like this. We're near Maldon in Essex.

Thank you.
I will certainly try to look into finding something.

 

[Kcbbrw]

I’m sorry your husband isn’t accepting his situation. It must be really hard for you and no wonder you are feeling drained.

It’s really difficult to say what stage a person is at. I used to find my husband seemed to fit in more that one description of stages of dementia. You can find a variety of different descriptions on the internet but this one may be of interest to you -

The progression, signs and stages of dementia

Dementia is progressive. This means signs and symptoms may be relatively mild at first but they get worse with time. Dementia affects everyone differently, however it can be helpful to think of dementia progressing in 'three stages'.

www.alzheimers.org.uk

Thank you so much.

 

[Kcbbrw]

Thank you so much.