can't get used to Alzheimers

can't get used to Alzheimers
Mon Oct 15, 2018 22:59 PM
Hi everyone, my name is Barbara and I care for my husband who has Alzheimers. I have struggled to accept this and still struggle. I hate the fact that he has this horrible disease and cannot get used to it. I put my husband first in everything I do but he scarcely knows I am his wife. We have a campervan and try to get away to his favourite site as much as he can, he can still drive but not so well now, and the site we go to calms him down as he occasionally gets violent and I can't stand that. I would welcome any help or information and hope to make new friends through this forum, also if I can help anyone with anything I will gladly do so.
Re: can't get used to Alzheimers
Wed Oct 17, 2018 11:24 AM
Hello Barbara, it sounds like you are, at times, understandably finding your caring role challenging and you have a right to be safe. Would you like one of our support workers to give you a call to see what support we may be able to offer you to help you look after your husband? You can also contact one of our team to talk about your caring role on 0300 303 1555, or you can email us at hello@carersfirst.org.uk if you prefer.

Take care.

Barbara originally posted: Hi everyone, my name is Barbara and I care for my husband who has Alzheimers. I have struggled to accept this and still struggle. I hate the fact that he has this horrible disease and cannot get used to it. I put my husband first in everything I do but he scarcely knows I am his wife. We have a campervan and try to get away to his favourite site as much as he can, he can still drive but not so well now, and the site we go to calms him down as he occasionally gets violent and I can't stand that. I would welcome any help or information and hope to make new friends through this forum, also if I can help anyone with anything I will gladly do so.

Last edited by CarersFIRST; Wed Oct 17, 2018 11:25 AM.
Re: can't get used to Alzheimers
Thu Oct 18, 2018 08:30 AM
Thank you for your offer but I don't think there is much you can do right now as I am continuing to care for him. I do have your number already in my phone in case I need your help. I think I just need to educate myself a little more in how I deal with some of the things he does. I have to realise that he is not actually my husband in the marital sense and change my thinking entirely, which I hate
Re: can't get used to Alzheimers
Thu Oct 18, 2018 09:55 AM
You know where we are if you need to talk. Hopefully people on the forum can also offer some practical help and share their experiences.

The Alzheimer's society has some really good resources about how to cope living with someone with dementia..you can find them here: https://www.alzheimers.org.uk/get-support/help-dementia-care/understanding-and-supporting-person-dementia-coping-dementia. Copy and paste this link into google.

They also have a national helpline..0300 222 1122

Are you in contact with your local Alzheimer's society? They are likley to run memory cafes or singing for the brain which you and your husband can attend together.

I am going to start a thread about Alzheimer's and Dementia for people to post which may also offer help and support.
Re: can't get used to Alzheimers
Mon Nov 19, 2018 13:04 PM
Dear Barbara, I fully understand your situation, but do think you need to discuss it with a professional. My Father had Alzheimers and was my Mother's carer. She went on with support from my brother and myself for as long as she could, but it was wearing her down too, and she was the one who was physically disabled, diabetic with a heart condition. As your husband does not really know who you are, and is becoming agressive I think you should talk to your G.P. (and your husband's if different) at the very least. I know how distressing it is for you both, but you both need to be able to feel safe in your environment. It was when my father started being agressive, because he was frightened and was traumatised by not knowing who myself and my brother were, and although he knew that Mum was his best friend, in his mind they were not married, and he didn't even believe it was his home so got worried every evening about where he was going to sleep, that we had to put his needs first and place him in a care home with 24 hour nursing. It is traumatic as you feel you have failed in your caring, but you haven't. Looking back it was the best course of action, as we could not give him the reassurance, care and attention he now needed, but could see him smiling and chatting happily with the nurses. You need to let someone else help you, even if it just to talk it through what you are going through, and having your husband reassessed so his needs are totally catered for. Best wishes to you both.
Re: can't get used to Alzheimers
Fri Jan 18, 2019 08:04 AM
Thank you for your replies. I am still caring for my husband, but because I have calmed down with him, he has also calmed down and isn't so aggressive, just a little angry sometimes, I can usually see if he is starting to get really annoyed and leave the room til he stops. As for the Alzheimers society I haven't found them to be of much use, when I contacted them 3 years ago they offered me a "buddy" for my husband, but that wasn't what he wanted or needed and when I told them that, they signed me off their books until 2 years later when I complained about their treatment towards me and I received a letter of apology but I don't have much faith in them since then, They sent me a newsletter and told me I could receive this newsletter every month for a £5 subscription fee!!! I think I am saving the nhs enough money by being a carer for my husband and should receive the newsletter for free. Anything you want to buy from them also costs twice as much as anywhere else and I thought they were supposed to be on our side!!
Re: can't get used to Alzheimers
Wed Jan 23, 2019 17:15 PM
One of the most useful books I have read (twice actually) is 'Contented Dementia' by Oliver James. It has examples and strategies all of which I have put into practice and can't believe the difference they've made. At the very beginning of all this life was horrible. We had stopped laughing together and I really don't think we liked each other very much. 13 months on from diagnosis we're back on track and life is good although very different to what we'd planned for. I think you're so right when you say that since you've calmed down so has your husband. I find the more relaxed I am about everything the more relaxed my husband is. Also when he is being difficult I look to see what my body language says. Even when I think I'm calm I know this isn't always the case.