Hi my name is Sheila and I’m 57, my husband was diagnosed with Altzeimers when he was 59 he is now 66 and I have been his prime carer for this time although it too us three years to get a diagnosis. We have a son who is unable to cope with the situation so doesn’t ally come by. I have found myself getting nearer and nearer to breaking point and decided to join this forum to see if there is any support. I did join the local support group a few years ago. And I would have been about 54 at the time but the careers in this group were in their 70’s and 80’s so I didn’t feel that I could relate to any of them. I still work but I’m finding this increasingly difficult because of the care that my husband needs. I took him away to friends for Christmas as I thought the peace and quiet would be good but each day he got more confused and after a couple of situations I had to come home early. I feel like I’m sitting on a time bomb because I never know what’s going to happen next. I’ve read some of the comments on here and I feel that this illness and others is so huge that I’m not sure I can deal with all this as well as feeling the need for support myself.
Hello Shiela. Glad you found us
My lovely husband is in a nursing home because of strokes and vascular dementia.Before diagnosis I too thought I was going to either break down , ( or run away!!) It’s a dreadful, heartbreaking situation to be in, definitely.
Do you have Admiral Nurses in your area? They offer one to one support which sounds like it would be beneficial to you. I joined a group, but, couldn’t cope with it, as I took the woes of the other relatives home with me. An alternative is to contact the Alzheimer’s association, and maybe they will offer support and suggestions. You need some respite. Others will be along with practical advice and questions, in regard to how to get some time for yourself. It is very important that you do, for your own sake, and your husband’s.
Wanted to welcome you really. You will find the forum very supportive, you can rant as much as you want, as no one judges. Sorry to hear your son can not cope with his father’s demise. Sadly, it’s not uncommon.
Dear Sheila. Hello and welcom to the forum. I am very sorry to hear about your husband’s illness and I have enormous sympathy for you. I am a similar age to you (mid 50’s) and I have a son too.
Please go easy on your son. He is still young and hasn’t got the life time experiences that you have. I’m guessing that your son is in his late 20’s. When your son visits he probably feels lots of different emotions.It must be incredibly difficult for him. He probably doesn’t know what to do or what to say to his dad. Plus your son has also seen a massive change in you - his mum. Make sure you spend quality time with your son too.
Of course you need support. Try to get some time to yourself each week on a regular basis, when you can do something you enjoy doing.
Has your husband had an assessment and is there a care package in place? It sounds like he should be having carers looking after him.
The more help you accept, the longer you will be able to care for your husband, so start by asking Social Services to do a Needs Assessment for him and a Carers Assessment for you.
After the assessments you should be given a written copies - make sure you get them and agree with them.
Do you have Power of Attorney for your husband?
I care for my son with severe learning difficulties, he’s now nearly 40 years old, so a long term carer. I also found that our local group was dominated by elderly carers with whom I had nothing in common.
What did you husband used to do before he became ill? Does he belong to any groups?
It is VITAL that you look after yourself too, and that you belong to some group, club, gym or similar to see new faces and have a decent conversation. Social Services should arrange for you to have some regular “me” time.
Hi Sheila vary quick reply but please see the Alzheimer’s society’s forum Talking Point- huge source of info and support for all types of dementia.
Hello and welcome to all the new members. I myself only joined this forum a few days ago. I have tried many other forums/support groups but have to say this one is by far the best. People are so kind and supportive and even if they don’t have first hand experience of your particular problem, there is always someone to offer a kind word, which in my case has proved invaluable and makes me feel less alone. The only advice I can offer is please don’t suffer alone. Accept help wherever you can. It’s so easy to lose yourself when caring for someone, but remember you can’t help anyone if you don’t look after yourself too.
I was eventually referred for counselling by my GP and it was a life saver.
Please come back and tell us how you are doing xxx