Hello this is my first post

[sapphire turner]

Hello everyone
My husband has been developing symptoms of dementia over the last 4 or 5 years, and we have finally had an initial GP assessment and are waiting for a CT scan before being referred to the local memory clinic. At least we can talk about it now (it was the elephant in the room for a couple of years) but the wider family are having problems coming to terms with it (“he seems fine to me”) and we are still living under a veil of shame and secrecy (making excuses to friends about why he is no longer driving). I feel like I am caught in some sort of weird parallel universe- is he still my husband or an impulsive 8 year old? Is it safe to leave him alone, and if so for how long?
I have been reading books about how I need to be mindful of his needs but no one seems to care about my needs. I know this is only the beginning of a one way journey that won’t get any better. When I read your posts I am cheered by your support for each other but alarmed by the relentless downhill direction we are probably going in. My mental health is not great at the best of times but I am committed to do my best for my best friend and I will do my best to never let him down. It seems a long and lonely way ahead though.

 

[jennifer1967]

i would stop looking to the future and just go day by day and breathe. everyone is different and have different journeys so you maybe worrying unnecessarily about something that may not happen. have you done power of attorney which is helpful for finance and health. this will help no end and was the first thing i did when my husband was diagnosed 2 yrs ago.
with other people, he might be in host mode which is hes keeping up appearances to other people but when theyve gone, hes exhausted by keeping it up. my husband can do this. then it looks like theres nothing wrong. i also have mental health problems, moderate /severe depression and anxiety so know where you are coming from. make time for yourself and do things that you like, a support network is good. i can leave my husband and hes fine so depends on how your husband is. i would sit down and just take a minute, nothing needs to be done now

 

[JaxG]

Hi @sapphire turner, I am sorry that you too find yourself in this impossible situation. Don't you just hate people saying 'It doesn't seem too bad' when you live with the PWD and know it's worse that any one else who doesn't spend every day with them can possibly know. I agree that it feels like the carers' needs are overlooked and no one can understand what it's like to care for someone with dementia. My husband was diagnosed 18 months ago after 4 or 5 years of problems, I am still trying to find a way to cope with the aggression and the 72 year old toddler that he as become. Life is very challenging but I have found TP a life saver. Look after yourself

 

[Izzy]

Welcome to the forum @sapphire turner.

I’m so sorry to read about your situation. I know how hard it all is. I’m glad you’ve found this forum. You are amongst people who understand.

 

[sapphire turner]

Thanks everyone it means such a lot to me to hear from you - I don’t feel so very alone! I am just reading a book called “the selfish pig’s guide to caring” by Hugh Marriott which has at least made me smile - it certainly tells it like it is!

 

[Duggies-girl]

One day at a time and remember that you are not Superwoman, you can't get everything right and there will be days when you want to throw in the towel and if that does happen it will not be your fault.

Make sure that you have some help and that you are not doing everything on your own.

Keep reading that book, it can help be very helpful.

 

[nae sporran]

Hullo and welcome from me too, @sapphire turner. It can be hard, especially when your own mental health is not great. I know that feeling too well. Someone once told me, probably on this forum, that even if you can't always do your best you can do what you can manage that day and go again tomorrow.
If you need help from outside carers or a bit of respite, even just a sitting service for a few hours, don't hesitate to ask your local social services for a care needs review and a carers review. It can make a huge difference.