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Advise Alzheimer’s

Alibongo2

New member
Apr 30, 2021
1
0
My partner is early onset Alzheimer’s. I need feedback from others going through this as I feel I’m losing a piece of him each day. Not sure friends understand as they don’t see what I do. He just doesn’t understand that I still have to work as well as look after him and run our household as well sorting things when we have our grandchildren. I’m not sure where to get helpful
 

Grannie G

Volunteer Moderator
Apr 3, 2006
73,107
0
Kent
Hello @Alibongo2

Not many friends understand. In fact few people understand unless they have experienced caring for someone with dementia for themselves.

Your partner is unlikely to appreciate your difficulties. It is one of the most frustrating symptoms of dementia.

Now the covid restrictions are easing, you might be able to find local support.


There is also a Dementia Connect helpline.


Try to get as much help as you can. I hope you will get continued support from other members who will share their experiences of managing a busy life and adjusting to what is a new way of life.
 

DennyD

Registered User
Dec 6, 2016
202
0
Porthcawl, South Wales
My husband found it difficult to understand me having to go out to work. Financially I needed to. He would call me (when he was still able) several times a day. Asking where I was, what I was doing, when I'd be home. Upon returning from work, I'd see him looking out of the window, waiting. It was heartbreaking. First I reduced my hours, then was able to negotiate a day's work from home - this was pre Covid. Eventually I resigned from my job, I felt his needs came first, financially a blow but we muddled through. He was more at ease with me being there, more relaxed and still able to do certain things. We enjoyed our time together. But throughout this family and friends did not understand the complexities involved and sadly were not able to offer the support my husband needed. Just before Christmas he was admitted to emergency respite, now still there, we are looking for a suitable care home for him. It's been a very hard emotional struggle - there is no other way to say it. Now I'm finding it difficult to accept he will not be back and struggle with letting go. I think we just find our own ways, day by day. I inform myself as much as I can and make decisions with fingers crossed. For me finding out about Alzheimer's disease, the support services available (or not available) gave me certain strength to carry on. Certainly checking in with Talking Point and getting to know about others' experiences has helped.
 

Nissan1

New member
May 4, 2021
2
0
My partner is early onset Alzheimer’s. I need feedback from others going through this as I feel I’m losing a piece of him each day. Not sure friends understand as they don’t see what I do. He just doesn’t understand that I still have to work as well as look after him and run our household as well sorting things when we have our grandchildren. I’m not sure where to get helpful
 

Nissan1

New member
May 4, 2021
2
0
I’m in the same position. The children say it’s just dad, friends say I’m imagining how he is. They don’t get the phone call whilst at work, from Andrew saying I don’t know where I am, I need to go home. He was 3 streets away from home. They don’t see that he can no longer make a curry when he use to make it on a weekly bases.
 

DazeyDoris

New member
Jul 9, 2020
6
0
I’m in the same position. The children say it’s just dad, friends say I’m imagining how he is. They don’t get the phone call whilst at work, from Andrew saying I don’t know where I am, I need to go home. He was 3 streets away from home. They don’t see that he can no longer make a curry when he use to make it on a weekly bases.
My friends and family were just the same at first but since my husband has been diagnosed with Alzheimer's they at least know it's not my imagination. Both our adult children spent extended periods with us separately during the two lockdowns and having lived with him both now fully accept what he's like and are very supportive. Last year my business ground to a halt because of Covid so I am now retired and have more time for all the caring duties.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,119
0
Yorkshire
hello @Nissan1 a warm welcome to DTP
it's tough when family and friends haven't yet come to see what the one closest sees
keep posting as folk here understand only too well and will support you
 

Agzy

Registered User
Nov 16, 2016
1,960
0
Moreton, Wirral. UK.
Hi @DazeyDoris and welcome to Talking point, a treasure trove of advice, guidance and also, as many of us often do, a place to just vent on issues and happening that are difficult to do so with family and friends. My partner, who has ALZ and I went through this with her children two of whom have come round to acceptance that it is not just a case of, “mam is just old and forgetful.” But a long process.
 

Izzy

Volunteer Moderator
Aug 31, 2003
64,377
0
69
Dundee
Welcome to the forum @Nissan1. As Shedrech says it's really tough when family don't see what you can see.

I'm glad you've found the forum. I know you will get lots of help and support here. Please keep posting.
 

Dianej

Registered User
Mar 27, 2021
10
0
I'm retired now but I experienced the sort of pressure you are under as I worked until a year ago. I loved my job and did not want to give it up but it was becoming impossible for me to keep all the balls in the air. My other half, who had taken early retirement, was happy at first at home doing DIY projects and a new hobby of wildlife photography. But he began to phone me constantly at work to check about simple things and would be waiting at the window, sometimes at the front gate for me to get home. At that stage I had no idea that he was showing early signs of Alzheimers and felt guilty for leaving him bored at home so much.
Eventually it became impossible to leave him on his own, but although there is a large concerned family, I got hardly any help and still do not. He does not recognise his diagnosis or that there is anything wrong with him at all. When family visit, he puts on a huge show with lots of banter, jokes and affectionate behaviour. When they've gone, he's exhausted and crashes into bed for several hours and the tiredness makes him more confused when he wakes up. They say things like "Dad was on good form today" and "We thought that Dad still has a lot of banter". They absolutely have no idea what our life is really like.
His consultant referred me to Admiral Nurses because of the difficulties caused by his lack of self-recognition and I have been given a dedicated nurse, but I think things are going to have to get a lot worse before I can really call on her for help. My partner is unable to acknowledge his problems so would not accept a visit from her at present. But it is a comfort to me to know that I do have someone who I can call on for advice or help if I should ever need it which I know will happen one day in the future.
If you don't have something like this in place already, perhaps it might be possible for your consultant or GP to arrange a similar referral for you.
Last, but by no means least, I am finding that this forum is a tremendous help and support with lovely thoughtful people.. Whatever your problem or question on here, you are never alone.