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Mixed dementia diagnosis, can I just wail a bit, please?(5 Posts)
Dad (86) had an MRI on his brain last week, and today we got the diagnosis of both vascular dementia and Alzheimers disease. It's early stages, but made a bit more poignant by the fact that we went to his brother's funeral yesterday - he'd been suffering from Alzheimers for years. Now Dad is still very 'normal' most of the time, but has significant memory issues which is what led us (well, me) to seek an explanation/diagnosis. Now we have it I feel like someone's dropped a truck on me - which is nuts, 'cos it's what I was expecting, really.
I'm an only child, so there's only me to do stuff - and I live in a different country from Dad, though have been in the UK looking after him for the past 2 and a half months. Due to go home to husband and dogs next Tuesday, and I feel so torn - don't want to leave Dad, but am desperate to see my little family. I'll be back here for Christmas, and now we have the diagnosis we have access to all the support services I can arrange for anything he needs in my absence - but, to be frank, I'm pretty scared about what the future holds.
I'm allowing myself today to have a bit of a wallow in the situation - tomorrow I'll just get up and get on with it. The memory clinic people can't predict how things will go, how fast this is likely to progress etc. (everyone is different), and I understand that - I suppose I'm just feeling my Dad's mortality a bit more now, and just wanting things to stay as they are.
I'm sure any of you with parents who have had a similar diagnosis feel the same, and I know I'll feel better after I get to see my husband, and have a hug. Dad seems unaffected by his diagnosis, says he's having a 'happy day' - which is good, and I'm staying cheerful around him - but really all I want to do is have a damn good cry! Hence this pot - somewhere to let it all out a bit Thanks for reading.
You have come to the right place to wail...
Honestly it need not be that bleak. My mother's psychiatrist explained quite gently that in the olden days her memory loss would simply been considered old age, and not given a label. Her decline has probably been going on for a while and so is likely to continue slowly.
There is a lot that can with medication and by optimising living arrangements. Aricept has been a bit of a wonder pill for my mum, though not for everyone. Moving to very sheltered accommodation, with a good cooked meal each day, company, activities and support has really helped as well. In part because she is no longer stressed by admin and maintenance, and in part she is now able to look after herself better. The same can happen by remaining in a community but having the right level of supportive care.
That said, though it is possible to reach a point where someone is safe happy and secure despite memory problems, it is not always easy to get there. There is a lot of learning about what is available and how the system works. Please come back and ask questions.
Come and wail/ let off steam or whatever with us. Even though you are expecting the diagnosis it is still a shock. Christmas will soon be here, and you may be surprised that your Dad may not be any worse. My Mum has ups and downs, but she also has a lot of other health problems.
Thanks - it's all sunk in a bit more now, but I'm not really sure how I'm feeling. Dad is still very much Dad at this point, albeit with memory lapses and the odd bout of strange behaviour (like trying to let non-existant people into the flat at 3 am!). We're talking about practical stuff like giving me the various forms of POA, and he seems to be in good humour most of the time. Our dementia support woman is coming on Monday, so hopefully there will be more practical stuff to arrange (I feel better when I can do something).
It's going to be horrible leaving here on Tuesday - I feel like I'm abandoning Dad - but then again, he is pretty much OK to look after himself at the moment (with a bit of support), and I need to spend time with my husband and nourish (and be nourished by) that relationship - which will give me strength to help Dad as things progress.
It's just been a bit of a miserable visit this time - I had to come over a few days earlier than planned because my aunt died, then I discovered Dad had been sitting here with an un-diagnosed broken wrist for 2 weeks - which I got sorted out, of course - then my uncle (husband of the aunt who died) started going downhill, then HE died, and then I got Dad's diagnosis the day after the funeral - and all the time missing home, husband and dogs (and cats, but not in the same way, sorry cats!). On the plus side, Dad's prostate cancer seems to be under control again, after I took charge of getting him to his various appointments (he kept cancelling them, mainly 'cos he was drinking too much).
The 'drinking too much' means that they won't prescribe Aricept or similar unless he decides to quit the booze. His first reaction was to say 'sure, I'll stop drinking' - but he and I both know that's not really going to happen - it's become a way of life for him to drink wine non-stop - and if that makes him happy, at age 86, I'm not going to try to persuade him otherwise (not that he'd remember if I did!). Just so long as he stays off the vodka, which is when he tends to fall over (hence the broken wrist and last year's broken hip and subsequent hip replacement).
I know all I'm doing is talking about how this affects me - but believe me I spend most of my time thinking about how things are affecting other people - Dad, husband, cousins who just lost both their parents in the space of 2 months, and so on. I would be spouting all this to my husband via Skype, but he's gone to the pub for the evening (lucky bugger), so I'm here instead. Thanks for reading, if you got this far - think I'm going (to the kitchen) for a glass of wine now! :D
What a rotten time you have had.
I know all I'm doing is talking about how this affects me not at all, but we have to think about ourselves. We can't tell our Mums and Dads how it affects us because a) they won't understand and b) if they did they would be so upset to think they are being a nuisance.
So here is a good place to let off steam without anyone thinking you don't care or are being selfish. The drink won't help your Dad, but at 86 what can you do? I can't stop my husband drinking, so I understand.
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