Start of the journey

[Bramble68]

Hello everyone

I've been reading some of the different threads and posts on this forum, until I felt brave enough to post.

My mum was diagnosed with mixed dementia a few weeks ago, but symptoms have been there for well over a year, maybe longer. She had some emergency surgery last autumn, needing a 4 hour operation, and had a long period of confusion afterwards, which we and medical staff put down to anaesthetic. She mostly got over this, but wasn't the same, and it's a sort of relief to have the diagnosis, mixed with anger and grief at the same time. Her own mother had the same type of dementia, so we've seen first hand what this cruel disease can do. Small things are already changing, as is our relationship with her.

Mum is fairly chirpy and calm, knows what's going on and has accepted it, and is aware of her limitations. Siblings and I think we have the balance right at the moment, in terms of doing things for her and letting her remain independent. Most of the time I sound rational, and we are planning things for the short and long term (e.g. Power of Attorney, future care for if/when we can't cope, etc.), but inside I'm crying like a little girl all the time because I feel she's going already!

I'm sorry to bother you all on a nice Sunday evening, just needed to let out a tiny bit of my frustration and sadness!

Xo

 

[Spamar]

So sorry for you, I've been there. Good idea to look ahead and do everything you can in advance. Also get in touch with local Alzheimer's society group or similar ( we have several alternatives in my area and they all have different strengths). Go and sort things out now while you have time. Makes it easier when you really need them.

Both my father and FIL had dementia and I was so glad I didn't have to look after them (FIL had live in housekeeper and 400 miles is a bit far to travel). My sister in law also had it, but she lived abroad. I still never expected to be looking after my husband!

 

[JayGun]

I know how you feel Bramble68. There's a lot to contend with and things are constantly changing. It's a scary time. I'm glad that you have siblings to go through it with.

One thing we find with MIL is that she tells a lot of stories about the wider family, being evacuated in the war, and my husband's childhood that we've never heard before because they were long buried in her memory.

The Alzheimers seems to be unearthing them and it's interesting, it's nice for her to have something to talk about, and it seems to make her happy.

Once the dust settles and everyone calms down a bit, it's all about focusing on the positives.

We had Babycham with dinner the other night because MIL suddenly remembered when they launched it in 1953. You'll still have good times. It's not all over yet.

Is your mum on medication?

 

[Bramble68]

Thank you for your kind replies, Spamar and JayGun!

Mum's recently started taking memantine so we'll see how she is with it. She's on other, non-dementia meds that I've been taking to her on a daily basis since January (was getting muddled with them).

I can relate to hearing stories you've not heard before, we've had a bit of that, too!

She's agreed to having her POA registered now, understands how much easier things will be for all of us, and I think it's a sort of relief for her, even though she's not had any major issues yet. She remembers how hard things were for her with her own mum, and is sometimes apologetic to us, thinking to the future possibly, but we keep reassuring her and I am very thankful to have siblings who are sharing things equally.

Bramble x