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Just plain scared. It's a lot to handle

nita

Registered User
Dec 30, 2011
2,410
0
Essex
I'm sorry you've read upsetting posts @Happy Hampton . Can you try to avoid these altogether? I know there aren't many people on this forum with your diagnosis and it's so good you still have the insight to post about your experience.

I never disparaged my mother's behaviour when she was ill with Alzheimer's because we'd always had a very close relationship and I knew what was happening to her wasn't "her" and it was heart breaking. I think, because I'd already had long experience of another family member having a serious mental disorder and, failing at times to understand what was causing his behaviour, it made me recognise that hers, too was, totally out of character.

Although she was also plagued with arthritis and her mobility became limited, she remained herself up to the end, and her spirit shone through although I know this is not always the case. The only reason she became paranoid at one time was because she had a urinary tract infection and when it cleared up she was better.

She was lucid - telling my friend clearly that there was no sugar in her tea (a visitor's error) and you could still talk to her although she didn't necessarily remember everything and this was right up to the end.

This is just my mother's experience but I wanted to give you hope that things don't always go as badly as the worst case scenario. You are very brave to deal with this diagnosis and I am glad your family are supportive around you. Try not to get disheartened, I know it is hard. You just have to deal with things as they happen - don't anticipate the things to come as they may never happen.
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
Nita, thank you for your heartfelt post. And for the glimmer of hope. It’s great your mum was lucid till the end. What a beautiful gift for you. I’m afraid I was having a bad day. I say I’m positive and cool with my diagnosis but I have some bad days. About the only thing that I get upset about is when docs treat me like I’m crazy and don’t take my concerns seriously.
I wish you the best of luck. Please keep us inform. 🌺
 

Happy Hampton

Registered User
Feb 22, 2022
96
0
@Happy Hampton



I feel your pain. This IS a support group but the vast majority of posters are carers rather than a PWD. Therefore the vast majority of prose reflects carers often at the end of their tether and in despair at a situation they have little hope of improving.

For example, A reoccurring theme (my memory may be muddled here ) is that there are few resources for our community vs. the vast amount of research/facilities etc. for cancer patients. The bottom line is that treatment for cancer has documented, measurable (and often positive) outcomes . For the PWD there is usually little apart from a policy of containment and peer support.

The fact there is little peer support for the PWD is that not all have insight like you and I, plus the vast majority deny there is a problem and defer a diagnosis until there is obviously something very wrong.

So how do I cope? I have always been a very positive person and this helps. I don't worry about things I cannot change, I ask for help and am not ashamed of my diagnosis. I feel like a sort of ambassador for PWD as wherever I go people are aware, and I try to re educate and dismiss stereotypes.. I have joined dementia support groups. I swim in cold water outdoors twice weekly which makes me feel alive. The lifeguards are amazing and supportive to the extent I have a designated lane.

There are things happening in the world at the moment which are far more worrying than our diagnosis. I cannot do much about that either, so I continue to live in the moment.

There is something wonderful happening every day. Mine today was the heron visiting the pond and finding a particular Moby track that I had forgotten and the cherry blossom beginning to show.

My words, written with help and corrections done for me.
Thank you for the wonderful post. And thanks for reminding me of all I still have. I’m sorry, I was having a really bad day. I admit, at first it was hard for me to read the posts by carers. It reminds me of what my family will suffer in the future. I went through years tending my mil with AD. I know the toll it takes on loved ones. It seems like there’s something new every day.
Now I’m on the other side. I see the world through different eyes now…I’ve always marveled at God’s beauty, but now things are more beautiful. God bless. ❤️
 

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