Heartbreaking to lose my Mum like this

Lunamoon

Registered User
Sep 30, 2019
12
0
Hi,

I'm new to this group today. My Mum seems to be in the second stage of dementia but we are not managing to get her a diagnosis yet - the doctor says we have to wait for a crisis point as she won't admit anything is wrong. She's also blooming brilliant at fooling doctors and friends that she's fine.

We started to notice personality changes and a slight difference to my Mum about 10 years ago but nothing major, then in the last 6 months she's started declining. Luckily my Dad is still strong and at home with her so she's managing day to day for the most part as long as she's in her comfort zone. If he wasn't there it would be a different story as he manages the issues on a daily basis - leaving the gas on, the oven on, losing keys etc.

The weirdest part is the loss of mobility - she often forgets how to walk down steps. She's fine if she's distracted and talking etc. but as soon as she thinks about it she gets frozen on the top step.

She cannot follow a recipe any more so every meal is a disaster. She doesn't need to cook but insists on doing it and then complaining that she hates it every time. My Dad has got used to eating burnt food!

She does make stuff up too - apparently she used to have a career on the stage...!

Animals form a big part of her thoughts - they've had 2 spaniels for 11 years and she has suddenly decided she doesn't really like them and would like a cat instead - keeps asking my Dad how long the dogs have left! She often sends cards to my cats with presents in :) She seems to have lost a lot of empathy for people, obsessing about animals and their welfare instead.

I recently took them both on holiday to get some quality time away, Mum couldn't find her way back to the hotel room once in the whole week. She took all of the wrong clothes with her and was exhausted by 3pm every day. I think it'll be the last time we go away like that but it was nice and a good break for my Dad.

I have LPOA for both my parents and thank god, only live 10 mins away but it feels like I lose my Mum every time I see her, it's like a never ending grieving process where she gradually slips away and withdraws from me more each time. She used to ring me 10 times a day and ask the same question but now I hear nothing from her unless I cal her. It's like she lives in a bubble, slightly on the outside of every situation.

Its very sad, i don't have children and do worry what will happen if this happens to me when i get older!

I feel for everyone out there suffering through this, it's a horrible disease with very little support for frightened people to get the right diagnosis - it's a big step going to the doctors to be 'tested' then tested again at a clinic when you know you don't have the ability to pass. For my Mum, i think if and when she ever gets diagnosed, it will be the end for her - she will lose hope and deteriorate.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
Hi,

I'm new to this group today. My Mum seems to be in the second stage of dementia but we are not managing to get her a diagnosis yet - the doctor says we have to wait for a crisis point as she won't admit anything is wrong. She's also blooming brilliant at fooling doctors and friends that she's fine.

We started to notice personality changes and a slight difference to my Mum about 10 years ago but nothing major, then in the last 6 months she's started declining. Luckily my Dad is still strong and at home with her so she's managing day to day for the most part as long as she's in her comfort zone. If he wasn't there it would be a different story as he manages the issues on a daily basis - leaving the gas on, the oven on, losing keys etc.

The weirdest part is the loss of mobility - she often forgets how to walk down steps. She's fine if she's distracted and talking etc. but as soon as she thinks about it she gets frozen on the top step.

She cannot follow a recipe any more so every meal is a disaster. She doesn't need to cook but insists on doing it and then complaining that she hates it every time. My Dad has got used to eating burnt food!

She does make stuff up too - apparently she used to have a career on the stage...!

Animals form a big part of her thoughts - they've had 2 spaniels for 11 years and she has suddenly decided she doesn't really like them and would like a cat instead - keeps asking my Dad how long the dogs have left! She often sends cards to my cats with presents in :) She seems to have lost a lot of empathy for people, obsessing about animals and their welfare instead.

I recently took them both on holiday to get some quality time away, Mum couldn't find her way back to the hotel room once in the whole week. She took all of the wrong clothes with her and was exhausted by 3pm every day. I think it'll be the last time we go away like that but it was nice and a good break for my Dad.

I have LPOA for both my parents and thank god, only live 10 mins away but it feels like I lose my Mum every time I see her, it's like a never ending grieving process where she gradually slips away and withdraws from me more each time. She used to ring me 10 times a day and ask the same question but now I hear nothing from her unless I cal her. It's like she lives in a bubble, slightly on the outside of every situation.

Its very sad, i don't have children and do worry what will happen if this happens to me when i get older!

I feel for everyone out there suffering through this, it's a horrible disease with very little support for frightened people to get the right diagnosis - it's a big step going to the doctors to be 'tested' then tested again at a clinic when you know you don't have the ability to pass. For my Mum, i think if and when she ever gets diagnosed, it will be the end for her - she will lose hope and deteriorate.

Having had a similar experience with my Mum, actually now she definitely knows the symptoms can be managed & help is available. The worst bit is the limbo land not getting a diagnosis or help in my experience.
Hope things improve soon for you it’s a difficult time
X
 

Lunamoon

Registered User
Sep 30, 2019
12
0
Having had a similar experience with my Mum, actually now she definitely knows the symptoms can be managed & help is available. The worst bit is the limbo land not getting a diagnosis or help in my experience.
Hope things improve soon for you it’s a difficult time
X
How did you get her to realise/accept there was a problem? My Mum is a stubborn ******!
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
We reached crisis after crisis. But I did ring CMHT & explain the circumstances along with social services, the vicar, the GP, anyone who could help build a picture of mums fluctuating condition.
Not easy & I had to walk away & let several crisis happen before I’m in this position.
Horrible experiences & avoidable if only Mum hadn’t been so frightened & awkward.

You get to the point where it effects your own health & have to make a choice!

Sad but true
X
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello @Lunamoon
a warm welcome to DTP
your mum is fortunate that she has you looking out for her ... and it's brilliant that you are supporting your dad as he tries to keep the ship afloat

sad to say, your mum may not come to any understanding that anything is wrong ... if dementia is around, one of the symptoms can be the loss of ability to comprehend their own situation, not denial, lack of ability

waiting for a crisis may be what has to happen, but in that scenario I worry about your dad, who deserves help ... is there any way he could begin to have eg a cleaner to get them both used to having someone else in their home .. and for the cooking, can they get takeaway some days, and ready meals too ... all to take the pressure off

keep their GP fully up to date with anything you notice ... maybe your dad and you could keep a journal, to provide specific evidence for any concerns
you mention the mobility issue with stairs ... might your mum accept medical intervention if she thought it was for this, or some other physical worry ... let her know it's not unusual in folk of a certain age and there may be tablets to help ... sometime a bit of stretching the 'truth' is necessary
and she doesn't have to know a diagnosis ... you can fudge over that ... 'just a bit of forgetfulness, drinking more water and taking the vitamin pills will help'

it's tough coming to terms with changes in your parent ... keep posting, it does help
 

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