My father may have Alzheimer’s but he hasn’t lost his sense of humour!
The other day, while helping my mum to change my dad, I said to him “Do you come here often?” “Only in the mating season” was his quick reply. It never ceases to amaze me the complexity of the mind; he doesn’t know me or where he is but ask him his birthday and he can recite it perfectly.
Another week has passed. The GP has been and my father has another chest infection. This explains the wakeful nights and increased confusion. He has only been out of hospital for two weeks and my mother and I feel quite low at times. I think it has something to do with the fact that we both know it’s not going to get any easier - if anything it will get worse; how long that will take, we do not know.
If you think of a patient who has an operation or a treatable illness you latch-on to the fact that it may be weeks or months for recovery, but hopefully they will get better. With my father we do not have that to look forward to. Alzheimer’s is a disease that will continue to progress and his health will decline. Further, my mum tells me that it is like she has lost her best friend - they went everywhere together and have never been apart. He is her life. She misses their conversations and not being able to go out and enjoy life together. Her life has completely changed; it is now dedicated to caring for him and she is adamant that my father will not go in a home. I support her, however, my concern is whether the resources in the community can allow her to fulfil this wish.
My job now is to ensure that mum gets the help and support that she needs so that my father doesn’t end up in hospital unnecessarily. I have self-referred my dad to the community nursing team and a community sister has been out to do an urgent assessment. Her priority is to try and get him mobile again and she has admitted him to the virtual ward. I have managed to get hold of the memory nurse and mum has finally been told how much my dad’s care is going to cost, although it doesn’t look like he will qualify to have his continuing health care costs met.
Being a carer is like being on an emotional rollercoaster; however, they do say “knowledge is power”, so I am turning this frustration into reading everything and anything to do with dementia - and there is a lot of information out there. Did you know there is a Dementia Care Strategy or end of life care pathway for Dementia? No, neither did I - but I am taking this information and using it to make sure my father gets the care he should. I am also tweeting so much that my thumbs hurt and am in contact with many carers and health care professionals in a real “virtual community” for dementia . However the best bit of this week has been finding the community sister - a friendly voice at the end of the phone whom we can call if we need help or advice. Although, my questions now are: why did I have to go out and find all this information and help on my own? Surely if you have been diagnosed with Alzheimer’s, the support and care should be in place to take you along that journey?