I have been married for nearly 38 years, but now my wifes behaviour is sometimes frightening me.
I thought I was capable and strong enough to deal with anything, but I am not.
Unfortunately, I have an ASD diagnosis, which for me, means I have an all or nothing type personality and that simply equates to yes/no, black/white, etc.
And what that means is total devotion, care, loyalty, everything. But now, my “rock” is not there and at times, I am truly petrified.
Forget friends and even family help, I feel alone.
I could get really deep and depressive here, but that doesn`t help.
I have another Carers assessment coming up soon, but if anyone can make any positive suggestions, ideas, advice, etc, it would be gratefully received, although I don`t think anyone will be able to really help, sorry.
Hello palerider
Welcome to the forum.
I realise you need straight answers . Unfortunately with dementia there aren’t any. My lovely husband suffered with it.
I suggest you contact the Alzheimer’s society and explain your situation. Including your ASD .
I won’t advice any more at the moment but I do understand you being petrified.
Hi Palerider,
Unfortunately your wife can no longer be your rock and I realise how tough that will be.
She will have lucid periods - in those moments perhaps she could explain how best to support you. She could dictate this too you to write down or give this information to a relative or friend.
You might find supporting her easier if you had a
when X happens do this …
guide. This may help you feel more in control.
Of course there may be situations not on the strategy list that occur - so a strategy will need to exist for these situations too. This could be ringing someone for help/advice.
Self care is going to be even more important - what helps you at times of stress? Make sure you use your coping strategies daily.
Hello Palerider, thanks for sharing your feelings on the forum, I do hope that the support from your fellow carers is comforting.
Some people, and particularly those with ASD, find it helps to feel really prepared for meetings like the Carers Assessment that you have coming up. Our Self Advocacy Tools have lots of practical tips that might be of use to you: https://www.carersuk.org/search/self-advocacy-eng
I was widowed suddenly when I was 54. We never argued, always shared and discussed things, so when my husband died, I really missed someone to discuss things with.
I had a counsellor arranged for me, by a local carers worker, but wasn’t told it was for a maximum number of sessions, so just as I started opening up fully, I was told I’d had my share of sessions, and he was leaving anyhow!!
My GP recommended private counselling at £30 a session, a lot of money to me, but I was desperate.
After a few initial sessions, I could then choose how often I saw Helen, my new counsellor.
She supported me all the way through mum’s last illness, and my brother’s death too.
When someone is ill, the focus of the medical staff is always on the ill person, and the carer tends to be told what they must do, with no consideration whatsoever about the carers own circumstances.
Counselling would focus entirely on you and your well being. It will not tell you what to do, but talk things through with you, helping you find what is best for you. It should be kind and gentle, going at a pace you are comfortable with.
It changed my life, I’d always been expected to support everyone else, with no thought about me.
Now I know I need to look after me too.
Today, I’m “on strike”!.
I haven’t been well recently, son with learning difficulties is now back at his flat, eldest son at work.
It’s taken me until 12.30 to have a shower and wash my hair, and will soon be sat in front of the wood burner watching Drew Pritchard.
Hi, Palerider. People above managed to find a lot of good, calming and encouraging words for you that I consider it difficult to even say a word. I hope you won’t blame for it. Demetia is awful and I wish no one face it. All I want to say you is to stay strong. I believe you’ll be able to withstadnd all challenges for the sake of all good.
The key to all caring, especially with something like dementia, is to remember that the more help you accept, the longer you will be able to care for your loved one.
Don’t try and be Superman or Superwoman, start yelling for HELP!