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The hurt I feel as a carer

Snowdrift1963

New member
Feb 26, 2021
1
0
I have just joined this group and already I know it is going to be good for me. Everything you write is so familiar. My husband is 83. I am 73. He has always been fit and well until about 18 months ago. Memory loss, which we all have when we get older, is expected but I knew immediately that what was happening to him was over and above the norm. Getting a diagnosis has been a nightmare and covid hasn't helped. It is so good to know that I am not alone with the feelings I have about being a carer and the hurt I feel. I don't know where to turn and the family won't accept his condition. They haven't of course seen him for over a year and he is quite normal if they phone or video call. Although he disappears after 10 mins chat as he says he can't hear properly and gets no pleasure in the calls. Sorry to have taken over with my own worries. Good luck.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,712
0
Bristol
Welcome to the community, @Snowdrift1963. Sorry you have the sudden changes to your husband to deal with on top of covid restrictions. everyone here is fighting similar battles anyway. Sadly your husband's ability to make your family think everything is fine is a common part of denial and what is usually referred to as host mode or hostess mode. My partner used to be very good at it.
Keep reading around other posts, you will find a wealth of information and support here.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,814
0
Hi @Snowdrift1963 and welcome to Dementia Talking point. This is a very friendly and supportive place, and you'll get loads of help and advice here.
It is very annoying when people who only have brief contact with someone with dementia think they are fine, and that the principle carer must be exaggerating. People with dementia can go into what we call round here host/hostess mode and fool people in authority and family that doesn't see them often that they are fine. They can't keep it up for long, and the main carer ends up having to pick up the pieces when the person with dementia (PWD) is worn out by the effort.
Have you had an official diagnosis? It may be worth email or calling your husband's GP and explaining your concerns, and seeing if he'll call him in for a check up. I know things are tricky because of the covid situation but a telephone appointment might be a good possible even if a face to face meeting isn't. When I was concerned about my mother I piggybacked an appointment she'd already made and discretely gave the GP a list of my concerns about my mother. It took a couple of appointments before he saw that our concerns were justified as mum was very good at hostess mode, and at the time her memory wasn't too bad, and the mini memory test that GPs tend to use looks at memory rather than other problems such as losing the ability to think logically.
Do keep posting with any concerns but in the meantime you might find using the search bar at the top a good place to find threads on topics that are of interest to you.
 

blackmortimer

Registered User
Jan 2, 2021
93
0
I have just joined this group and already I know it is going to be good for me. Everything you write is so familiar. My husband is 83. I am 73. He has always been fit and well until about 18 months ago. Memory loss, which we all have when we get older, is expected but I knew immediately that what was happening to him was over and above the norm. Getting a diagnosis has been a nightmare and covid hasn't helped. It is so good to know that I am not alone with the feelings I have about being a carer and the hurt I feel. I don't know where to turn and the family won't accept his condition. They haven't of course seen him for over a year and he is quite normal if they phone or video call. Although he disappears after 10 mins chat as he says he can't hear properly and gets no pleasure in the calls. Sorry to have taken over with my own worries. Good luck.
Hello @Snowdrift1963 and welcome. Like you I'm fairly new and can only say that the help and understanding I've
'received is overwhelming. Having conversations with people who know what it's like because they've been there is so therapeutic. I battled with being a sole carer for my wife for over 5 years before throwing in the towel and calling an ambulance one Sunday morning because I felt physically threatened. I was lucky in that our adult children were always supportive but they both live so far away that they could only visit every so often. However, it is valuable to have the family onside and I hope that you can persuade yours to accept the situation. Key I think is getting a diagnosis. I regret the time it took for me to do that. I suppose I was subconsciously trying to pretend it wasn't as bad as I feared and that my wife would wake up one morning miraculously better. It didn't happen of course although due to the fact that, particularly in the earlier stages, the disease fluctuates sometimes quite wildly, false hope is only too often kindled only to be extinguished in short order. So find a reason to get the GP to visit your husband, prime them that you're concerned about dementia and hopefully they will (a) prescribe some helpful medication and (b) refer to the local memory clinic for a specialist visit. It does take time - I suspect more so at a time of Covid - so in the meantime look after yourself - I didn't and regret it - get away from the problem by doing anything outside the house even for a short period and if you can get some help to give yourself free time, do so. Again I didn't and I'm nor sure that I did myself or my wife any favours.

You're at the beginning of a potentially long journey and have taken exactly the right course in joining this forum. i recommend you take full advantage and share your burdens. Someone, possibly everyone, will have been there before and will have sympathy and advice. Good luck.