I have been my husband's sole carer for almost four years, managing fairly well despite my own health problems. COPD, severe arthritis and Graves disease.We have been married for 60 years now , but followiing a mild stroke in mid december of last year his dementia has literally galloped away and he has had to be in hospital for most of the time since then. the hospital kept pushing me to take him home even though he needed 24 hour care and he came home on New Years eve with a care package. The carers came at random times and , although kind, he would not accept them so for 4 days and nights i had no sleep. Our two daughters came for the last two days because he was hallucinating and attacked me.Every care home advertised dementia care but after we had exhausted all the directory discovered on assessment that they only took mild dementia or the home was was not secure enough. It seems that they only accepted little " Miss Marple " confused types. Finally, because it was discovered that he needed Nursing care, a really wonderful place accepted him two weeks ago and they are helping him settle gradually. All that time and worry wasted and took a big tolll on us. Fees are very high so the next worry will be about affording top up fees.He has an assement next week to determine if he can have continuous healthcare but I hear it is very hard to get.Getting through to inform Pensions credit, Attendance Allowance etc. means hours in a queue so still have not got things sorted.I am sure that many of this Community has been through this. Polly X
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Polly4acre
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Thanks for getting in touch, and I'm sorry to hear that you are experiencing this. Dementia can have a debilitating effect on both the person diagnosed, and their family. It is important to voice these concerns to your friends and family also, if you have not already done so. Being able to share your current situation can be beneficial to take some of the stress off, even if a minimal amount. It may also be helpful to go to your local health care professionals, to see if they have any further advice that could help, aside from the routes you have already looked into.
As you mentioned you have your own health problems too, it is important for you to stay aware of this too, although I am sure it is easier said than done given the stressful circumstances. However, alongside caring for your husband it is beneficial for you to try and focus yourself on any other activity, for any amount of time, for example joining a community club.
I have also linked the support link through the pain concern website which may be of help to find support within your community. painconcern.org.uk/how-we-h...
Please do feel free to post whenever on this forum also with any concerns, which can hopefully be answered by us or our community members
Hi Polly4acre, really sorry to hear you and your husband are suffering like this. Can I ask if you visited nursing homes or residential homes because when we were looking for a home for my stepdad I found that nursing homes take more severe dementia patients whereas residential take milder cases. In the nursing homes the doors to outside are secured and you need to use a key code to get in and out. Have you contacted social services because they usually are the first port of call. I hope this helps.
Hi Polly4acre, I've just re read your post, properly this time lol, it's my fibro fog!! Good luck with the assessment CHC, it isn't easy to pass, a social worker let slip that you need to be terminal for them to pass you, it's disgraceful. My stepdad has a neurological condition, he has been tested but o ly passed for his NHS nursing to be paid. He had to sell his house to pay for his care but has deteriorated greatly and I think its time he was re assessed. Its a astounding how much needs to be sorted out when someone goes into care. I hope all goes well for you. Xx
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