What a difference a year makes....

[sparklestars]

I suddenly realised the other day that it was about a year to the day since I came on here desperately confused and seeking advice and support regarding my Mother in these two posts:

https://forum.alzheimers.org.uk/threads/mother-gone-away-for-the-night.98434/page-3#post-1370663
https://forum.alzheimers.org.uk/threads/end-of-my-tether.98359/page-2#post-1369169

I thought - in case anyone is as curious as I sometimes am about what happens - I would offer an update as some people were so kind in responding and gave up so much of their time.

Things moved fast after January, Mother eventually agreed to come to the GP and admitted the extent of her problems (about April ish I think), she was referred to the Memory Service and they gave her a cognitive test which showed there was definitely an issue and they arranged an MRI Head Scan. She saw the Psychiatrist for the results of the MRI in November and he immediately diagnosed mixed dementia (Alzheimers and vascular) at a moderate stage and told her she was not to drive again until the DVLA approved her to do so (they removed her license once contacted). She was put on 0.5mg risperidone which was upped to 1mg a month or two later - they have helped a lot with the delusions, though they haven't entirely stopped them. She is still very nasty about me behind my back to her friends and neighbours, which I thought she had stopped doing....but have just found out she still does it which I must admit I am hurt about as I have practically run myself into an early grave this year [sigh].

She was admitted to Hospital today after somehow having her first 'fall' in the night - though she did manage to call the ambulance herself after she had been on the floor 6 or 7 hours. Some days she seems fairly okay and others she is clearly very delusional....thinks the neighbour's demolishing her fence....that she is in someone else's home when she's in her own home that she's lived at 52 years and so on. She also hallucinates that she sees my Dad (died six years ago) yet conversely she knows it is not him as he's dead even when she 'sees' him! The speed of her decline takes my breath away - I just cannot believe how fast she deteriorates from one month to the next.....not being able to drive (though a great relief to me) really took her down too as her mobility is very limited due to arthritis, joint pain etc.

So there we are - not a 'happy ending' of course, but at least she did get a diagnosis fairly quickly, I now know what we are dealing with and at least I am not having to deal with the manic and fury fuelled person she was last year. We have both the LPA's sorted (just waiting for the property and finances one to be 'approved' by OPG) and an Advance Decision written and signed. It is still a nightmare and the unpredictability of it exhausts me....but in a much different and far less frightening way than last year at least.

I'll never forget how scared and lost I felt though - and how comforting it was at such a lonely and isolating time to have people on her that gave up their time to comfort and reassure me.

Thank you again. Xxx

 

[margherita]

Hi @sparklestars ,
It must have been a difficult year for you, but you have some things settled at last. The rest is, as you say, unpredictable.
An Italian saying (I am Italian) sounds like this : " Hope for the better, be ready for the worse".

 

[Kikki21]

@sparklestars eek - I just read your end of tether thread & you could have been posting about my mum!
We too have had accusations of stealing, she’s accused me, plenty of other people, we are all unreasonable, she is incredibly demanding & very, very difficult to deal with. She is very adamant about things & if you didn’t really know her or know about her dementia then she could convince you that things were true.
Sadly there has also been a huge decline in her health from over a year ago. Last Christmas, I decided that we would all go out for a meal, we were still able to do that with her.

She was also difficult that day but we were able to have a reasonable day with her. This Christmas, she has spent it in hospital & there is no way, we could take her anywhere with us. She has also got mixed dementia, Vascular & Alzheimers but more Vascular.

You definitely have my sympathy as an only child myself xx

 

[canary]

Thank you for your update @sparklestars
I know that it is sad to see the inevitable progression, but I am impressed at how much you have managed to put in place. Extra Brownie points for the Advanced Decision

An Italian saying (I am Italian) sounds like this : " Hope for the better, be ready for the worse".

We have the same saying - hope for the best; prepare for the worst.

 

[margherita]

We have the same saying - hope for the best; prepare for the worst.

Thank you, @canary,
I did not know the English equivalent.

 

[sparklestars]

Ahhh @canary - how nice to 'see' you again

Thanks - it has been a difficult year but luckily I work with a lot of people with dementia so am pretty familiar with what is out there....though it's so much different when it's your own family as opposed to a 'client' you work with

I hope you are keeping well and things are running smoothly for you....? Xx

 

[sparklestars]

Thanks for replying @margherita - every time I think I am prepared for the worst, it just gets worse than that lol. But thanks X

 

[sparklestars]

@Kikki21 Oh dear yes....I've just had a skim through some of your posts Yes they sound a similar type of person and I think we have probably had a similar type of relationship with our Mothers My Mom is also still in Hospital at the moment - it's so difficult trying to juggle everything isn't it I've just been round her house today, taking the opportunity whilst she's in Hospital to try and declutter it a bit and find some of the paperwork that I will eventually need....I couldn't find it but did manage to salvage a lot of other stuff that I wanted to take and keep safe. I also feel very stressed all the time and am having trouble sleeping - trying to juggle a job, Mom and being a single parent to a 10 year old is not easy sigh. But then....none of us here have it easy do we! Xxx

 

[canary]

Its been an interesting year for me, @sparklestars
Mum has passed away, OHs frontal lobe issues have increased and he has had a stroke.
You are right - none of it is easy.
xx

 

[sparklestars]

Oh my word @canary - I see the year has also brought a big difference to your life I imagine you've barely had time to breathe/process your Mum's death whilst dealing with OH's issues...I am so sorry to hear that.....I thought I had my plate full but now it feels half empty!! I do wonder how you managed supporting two people with dementia.....I'm crumbling with one and it's not even as if we had a good relationship to start with! I take my hat off to you.... Xxx

 

[canary]

Well I wasnt caring for both of them at home. Mum was in a lovely care home and fortunately (!) she passed away before OH had his stroke, so now I only have the one to deal with.
It always feels to me as though everyone else has it far worse than me, but then, I think that is a common thought on here. We are all struggling.

 

[Kikki21]

@sparklestars - it is very difficult & when you haven’t had the best relationship with the PWD then I think it makes some aspects even harder. Ditto to my mum still being in hospital, we hope to visit her earlier today as the evening visits have been getting me very down.
My fiancé & I are also thinking we have a cat with dementia symptoms. Kikki the cat is nearly 15 now & has had some issues which now I have read up on cat dementia sadly match up so we will have to take her to the vet for a check up.
She is a fabulous companion for sure.