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Rant about husband having Alzheimer's

Reds

Registered User
Sep 5, 2011
565
Hertfordshire
My husband has Alzheimer's, luckily his progression has been gradual. He is about 68 now and been diagnosed for 10 years. He doesn't make much conversation or join in with conversations. At least he is calmer than he was but on a lot of medication but at least I can still cope with him being at home. Seems to understand what is being said but short term memory quite bad now. He is sometimes urine incontinent but definitely at night time. Sometimes he starts laughing about things that are not funny and does this in his throat which makes him cough. Its annoying that he has mild COPD and very sensitive skin. He has red blotches on his face and neck at the moment a reaction from antibiotics (annoying) also suffers from Psoriasis.

Every day I feel sad about him being ill and still find it hard all this time to stop hoping he could be ok. He walks very slowly and eats slowly too. I am dreading him deteriorating more, I guess his stage is the moderate one. I do wish I could have a rest and a change ie a pleasant holiday but now there is the virus worry that's out of the question at the moment at least this year.

In the past my daughter has stayed and looked after my husband for 4 nights but its a lot for her to cope with as has two children, a job and husband, I would also rather my home wasn't taken over. It would be good if my husband could go into a care home for a week instead but never has and I would feel so sad about that. I would also worry if it would cause him to change at all and if appropriate good care. It would also feel like I'm rejecting him. It seems that it would be easier to just stay at home and manage but I am 8 years younger and feel that already I haven't had enough breaks and things get a bit same(y)! I don't feel bitter just wish things could be better/different, don't we all!

I'm frustrated about the virus like everyone. At least he had day centres to go to and seemed to enjoy going to them so was ok for me to go out for a day now and again. Know there is no point in me wishing but the virus has really put the dampers on our lives. It would be great if he was still attending his day centres as one of them was the highlight of his week. We had a good system in place. I wish I could have more understanding from the outside world too ie from family and friends about what its like to be more limited in life and its not me that's ill!

Life's so complicated because I know if I lost him I would feel devastated and more lonely even though I would gain my freedom! My emotions can be so up and down. Think my main problem is coping with the sadness of it all, feel the way forward is to have full acceptance and just be down to earth about it but that's hard and perhaps impossible, may be selfish! My life isn't at all balanced with having a husband with Alzheimer's!

Reds
 

Agzy

Registered User
Nov 16, 2016
1,525
Moreton, Wirral. UK.
It is amazing how we all go on and try our best but all feel like failures in at least some respects and just feel so guilty about how ‘selfish’ we feel, life sucks sometimes for sure.
 

Bikerbeth

Registered User
Feb 11, 2019
1,561
Bedford
Some other people on here have mentioned that Day Care is open again in their areas. Could you check if anything is starting up again or are you not comfortable with the idea? I was just hoping it would give you a bit of break which it sounds like you need (understandably)
 

Reds

Registered User
Sep 5, 2011
565
Hertfordshire
Thank you Bikerbeth. One centre said they were thinking about just doing lunches as they could then do social distancing but my husband only went to that one in the morning for a couple of hours plus I would have to stay with him at that one. The other wasn't able to say if they had an idea when they would open. I will text one other today but don't think they will open yet. Its frustrating but also I am worried about my husband picking up the virus if he did go but as we don't know how long this matter with the virus will go on for I suppose we just have to take the risk of him going. Would cheer him up. Know there would be safety measures in place but think that would concern him. He doesn't remember about the virus but occasionally a reminder of something might. I can't imagine the places he went to will open up this year! It feels like we are at a standstill. I do nice things but probably don't get a long enough break ie very rarely longer than 24 hours! Last time was 4 nights beginning of August last year. Thanks again for your concern.

Reds x
 

MrsChristmas

Registered User
Jun 1, 2015
178
Thank you Bikerbeth. One centre said they were thinking about just doing lunches as they could then do social distancing but my husband only went to that one in the morning for a couple of hours plus I would have to stay with him at that one. The other wasn't able to say if they had an idea when they would open. I will text one other today but don't think they will open yet. Its frustrating but also I am worried about my husband picking up the virus if he did go but as we don't know how long this matter with the virus will go on for I suppose we just have to take the risk of him going. Would cheer him up. Know there would be safety measures in place but think that would concern him. He doesn't remember about the virus but occasionally a reminder of something might. I can't imagine the places he went to will open up this year! It feels like we are at a standstill. I do nice things but probably don't get a long enough break ie very rarely longer than 24 hours! Last time was 4 nights beginning of August last year. Thanks again for your concern.

Reds x
Hi Reds

i was so sorry to read your posts it sounds like you’ve reached the end of your tether and you’ve so much to deal with on your own. Your situation sounds very hard and frustrating.

would it help you if you could clarify what would things easier for you to cope? Just take some to think about the options available to you?

Say, would respite care for a week give you the time to play golf, be with friends have a holiday? I know that you would be doing this on your own and not with your husband but it would give you ‘me time’. Or is it that you want your husband to have more enjoyment out of life but you are just too exhausted to do now?

Msybe a chat with your GP for counselling?

In SOME ways your dilemma was similar to mine but I didn’t live with my mum but nearby but i did become her (sort of) carer and there was only me. I looked after her throughout the lockdown and I sort of understand that terrible sense of isolation. I’m now moving away which I know you can’t do.

Social Care, Age Uk, Alzheimer’s Soc, my GP, Mind were all really helpful for me but Mum refused EVERYTHING and just wanted me.

There is help out there for your and your husband but it sounds to me that you must put yourself first sometimes.
 

Reds

Registered User
Sep 5, 2011
565
Hertfordshire
Thank you Mrs Christmas. Your online name has made me smile! I believe we would have to pay for respite care, a bit would be ok but I think that its difficult to book a particular week so that would make booking a holiday difficult anyway. It would be so good if the day centres could open however I am nervous about my husband getting the virus. I like the idea that if I went on holiday I could leave my house empty without having it taken over with people looking after my husband. It would be great too if I could have a holiday with my husband but we have to take so many incontinence items such as bed pads and pants, medication etc. Also difficult for me to leave him if I needed to go to the loo or pay for something! I guess I am seeing a lot of obstacles! I don't even mind where the holiday is and actually its not the thought of a holiday but a rest from the everyday repetitive things I have to do, a change! However, it feels hard as I don't know how long the caring will last!

Reds x
 

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