I am Ron and I have been caring for my wife for about 5years on an increasing basis. She is 80 and I am 83. She was formally diagnosed with Dementia in 2017 and her condition has steadily worsened until now she is unable to hold a conversation and is doubly incontinent. I have been paying for help from carers three times a day since earlier this year and could not manage without them.
I find it immensely distressing after 57 wonderful years of marriage but life has to continue as best as possible, and there is still an occasional good day when we can happily interact. Some other days bring utter despair.
I have a practical ability and have managed to adapt our home to give a good environment for her but I lack capability in dealing with body and mind problems. The unpredictable nature of the illness gives a dreadful rollercoaster of extremes every day which the carers mostly manage to deal with. I continue to search for a primary source of advice I can turn to, on how I can negotiate the immediate nightmare ahead.
Hello and welcome Ron. Is there a local dementia group you could both go to? I used to take my Mum to one and she really enjoyed it. It was for people with dementia and their carers. We used to chat, have coffee and cake, sit in the garden if it was nice, and there were puzzles and games for people who wanted to do them. It was once a week and it was a lovely friendly atmosphere.
I can recommend a book by Martin Slevin called “The Little Girl in the Radiator” which outlines his Mum’s journey with dementia it is moving, funny and honest.
I hope you don’t mind me saying but it may be that your wife will need more care than you and the carers can provide so it might be an idea to look at what is available in your area. my Mum spent the last 3 years of her life in a wonderful care home where she was treated like the Queen 24/7 and she was beautifully cared for and loved by them all. Until Covid I was able to visit as often as I liked which was usually every other day and I used to take my Mum out too. I could not have looked after her like they did.
You might also like to look at Alzheimers Site. they have a forum called Talking Point.
Take care Ron. Xx
Hi Ron, welcome to the forum.
Are you claiming Attendance Allowance and exemption from Council Tax?
So many people miss out on this, I ask everyone who mentions dementia.
Your wife sounds very ill, has anyone ever mentioned NHS Continuing Healthcare to you? FREE care provided to those with very high care needs.
Have Social Services done a Needs Assessment on your wife recently, and a Carers Assessment for you?
If you have under about £46,000 they will pay for some or all of the care which she needs.