Welcome to Carers Connect, you can make your first post here and also find useful resources. It would really help if you could introduce yourself and say a little about your caring role
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Hi, I’ve just found this site. I’m 73 and my wife of 53 years has Alzheimer’s Disease. At the moment her condition isn’t too advanced but I can see her drifting away more and more, and having watched my mother succumb to Dementia and turn into someone I didn’t know, I realise that the end is inevitable.
We’ve always done everything together and she’s been my best friend since we met, but she’s less willing to do the things that we’ve always enjoyed. I’ve experienced all the emotions - disbelief, anger, frustration, guilt, self-pity, sadness and depression, and I don’t know how I’m going to cope as things progress. Most of my friends have passed away now and although we have kids and grandkids, they all have their own lives and problems and I don’t feel able to expect them to fully understand.
I realise that my problems pale into insignificance compared to the issues that some of the people on her have, but finding this forum has made me realise that I’m not alone in trying to deal with the lonliness and heartache, and somehow that helps.
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Hi, I’m new to this community. I am a joint carer for my adult son along with my husband. We have recently had a stressful time getting the dwp to recognise both of us as carers- mainly I think because only I get carers allowance. We had been claiming income support but were migrated over to universal credit.My husband was expected to look for work as a condition of our universal credit claim and was told he could not be considered a carer as I already get carers allowance. We argued that he was still a carer despite not being able to claim carers allowance but this was dismissed. So we scoured the internet looking for help and we found a regulation that matches our situation perfectly. Once we requested the dwp to consider our situation with this regulation in mind they agreed that my husband did not have to look for work as they accepted that he provided substantial care for our son (35 hours +). The reason I am posting this is that the advice lines we contacted were unaware of this regulation and had been saying , albeit in a more sympathetic way than the jobcentre, that my husband would need to look for work and the jobcentre staff seemed unaware of anything relating to carers.If we had not challenged this it would have resulted in an enormous upheaval for all three of us but particularly for our son who does not adapt well to change.
The regulation in question is 89b of the universal credit regulations . I hope this is helpful to others in a similar situation as I feel very strongly that caring for a severely disabled person is hard enough and anything that makes our daily life more manageable is worth sharing. I’m not suggesting that our way is the only one way to manage the care of a severely disabled person but it is about finding ways to allow people to decide for themself what is the best approach.
Hi
I am a carer for my husband who has descended into depression and makes no effort to engage with any help. He first tried to commit suicide, which was really just a cry for help as I was in the home and he told me he had done it, a year ago.
The cause was a physical illness which he just could not accept he had recovered from. He is on the autistic spectrum. I sadly felt he enjoyed the attention he was getting. His second attempt was an overdose a week later. Seven weeks in hospital due to numerous infections later, when I had visited him daily, he had all my attention and his needs dominated my life, I became his fulltime carer.
How lonely is this, I couldn’t cope and there is NO support. I joined this but being unable to engage meant I gave up. I can understand, we are vulnerable enough and I suppose there are people who would not respect this and take advantage. But I just felt lost and alone.
Always been a coper, cared for Mum with cancer, Dad with dementia but only in early 60’s and now this.
If he tried to get better, engage with the scant support we are offered then I may feel different but he has me hostage. His third attempt on his life was two days before a long awaited weekend away with my friends. Luckily the cuts to his wrist were not too bad and he was sent home. Because he promised he wouldn’t do it again. I stood strong and went away with friends. But I ad to come back, and he calls the crisis team if I go out.
I booked another trip away and two days before that he took an overdose, this time aspirating vomit caused pneumonia. Had the DNR discussion with the doctor but he recovered. So no trip away, it worked. If I leave home he calls and cries that he is missing me.
We have had a very independent married life, I worked away, he never cared. Now I am tied to him. I want to get away from him, but if I go out or try to stay away he doesn’t eat and just lays in bed.
I am sorry, I just needed to get all this out as I feel so invisible. As if all my needs are forgotten because I married for better or worse. But I just seem to have had an awful lot of the worse.
I have read so many others who are in a similar position so I know my thoughts are understood