My partner was diagnosed with mild dementia about 12 months ago and it is slowly getting worse. I hasten to say that it is not as bad as some people I know. Nevertheless, it has been a shock and I sometimes feel as though I am not coping. This journey we are on seems overwhelming.
New Carer
- Thread starter Mike1946
- Start date
Welcome to the forums Mike. Sorry you are having to adjust to caring for a partner, but you've come to the right place for advice and support.
If you need help then assuming you are in the Uk you can ask for a carers assessment and a care needs assessment to see what help you can get with personal care, day centres, sitting / befriending service or anything else you may need like a benefits check.
If you need help then assuming you are in the Uk you can ask for a carers assessment and a care needs assessment to see what help you can get with personal care, day centres, sitting / befriending service or anything else you may need like a benefits check.
Coming on Talking Point has been a life saver for me.....it has seen me through some very dark moments in the last two and a half years. I have found friendship, advice, tips and thoughts.
You can come on here and express exactly how you are feeling about this awful disease and the impact on your life and you are never judged, but will be treated with care and respect...... please stay with us.
Importantly as @nae sporran says - get all the 'paperwork' in place, even if you don't think you need it now. Things like Power of Attorney, Benefits checks, ( getting some benefits opens doors to others, like Council Tax rebate)whether your partner should still be driving, see what support social services offer, and local support groups ( we use one for transport).
It might seem a great deal to take on board all at once, but little by little you will get through it, and gradually everything will become more organised for each stage as you and your partner pass through it.
Keep coming on here, and learn from our advice, and sometimes, our mistakes....
Good Luck!
Welcome. You might this 'new carer's' guide helpful as it contains loads of useful info: https://www.alzheimers.org.uk/get-s...03.1130033284.1559162604-945042157.1514915509
I find the local Alzheimer’s Carer Support Group really helpful. You get to meet other local people travelling the same road and share the problems, solutions, frustrations and usually a laugh as well.
https://www.alzheimers.org.uk/find-support-near-you
https://www.alzheimers.org.uk/find-support-near-you
Hi Mike and welcome to the forum.
The early part of "the journey" can be very hard and traumatic, for both you and your partner. During the 5+ years for me and my wife (PWD), there have been many times where I thought I would crack up. However, as I have got through each crisis, I've managed to develop various coping strategies, so far, at least.
Like many others in this situation though, I have found it difficult to move from being a loving husband, to being her carer. Of course I still love her deeply, but I have lost my best friend and soul mate.
The support and advice we receive on TP is invaluable so I wish you strength in coping with the changes as they happen.
Regards
Phil
@Mike1946 I would like to echo what has been said and also say that my story is similar to yours, mild late onset diagnosed a year and a quarter ago and a decline to a very limited life now. The strategies that I have learned from other people have been invaluable. Like Phil, moving from spouse to carer is the hardest part of what I increasingly see as my job, not one I ever expected to do and which has altered the course of our retirement lives. I have just reached a point where I can manage and carry on with a sort of acceptance but with the help of Talking Point I made it without the crack up I feared about six months ago. So there is hope, it’s just not the life expected and by adapting I survived.
So many thanks to all who have replied. I have been involved in sorting out all the 'legal' stuff and have been well supported through this process. It is just all a traumatic shock and whilst I have been functioning on one level it has recently hit me hard and I am now having to come to terms with what is ahead of us both. Many thanks again.
I have just finished a book called Dementia from the inside by Dr Jennifer Bute. I found this very helpful in coming to terms with being a carer. The online videos are particularly good and I am finding them a help and logical.
I hate the way dementia is progressing in my wife although slowly but it has become a reality and I need to be accepting and not be in denial. How does one cope - I really feel tired!
I hate the way dementia is progressing in my wife although slowly but it has become a reality and I need to be accepting and not be in denial. How does one cope - I really feel tired!
I also survive - just. The hardest thing for me is going on a 'normal activity, and then returning home to the bizarre life I lead as a carer - I find that very hard to accept, and spend most of my time almost in tears - just hanging on......
I too feel tired and I think it’s more emotional and psychological than physical. I have had to make another adjustment over the past week or two as he has worsened physically and mentally. He hardly goes out at all now and has become an ‘invalid’, not an actual one but behaves as if he is. I can leave him for a walk or for shopping as long as I am not out too long, so as he has got worse, my life has got a little easier because he is in his bed where he is safe. It’s a case of accepting that I am alone even though he is there. Yes I now accept that he is handicapped and continually have to make small changes in my behaviour because he can’t and I try to avoid angst.
Like you @maryjoan I find going into real world and back to wonderland very disorienting. I don’t cry much but certain things bring on that huge bursting emotional feeling and I sob. That seems to release the pressure.
@Grahamstown - that is exactly the right word - disorientating - exactly. I also feel rather envious ( not a nice thing) of people who have ordinary lives to live, and not this weird half life......... and it is weird.
