Caring from afar...Losing my Mum...Struggling to help my Dad

hepalmer

New member
Sep 30, 2020
6
0
Hi All, I finally found the courage to dig into the Alzheimer's org website and join the forum and post something... i'll type fast before I lose my nerve or start crying...

in 2018 my Mum get confirmation that she most likely had Alzheimer's - this followed a first trip to the memory clinic in 2016. Her deterioration since 2018 has been fairly fast. She still recognizes the main family members, but can't respond to any conversation, has trouble eating, and is now starting to become frustrated and aggressive. She was the heart of her family, ran everything, nursed her own mother-in-law through Alzheimers. And now she's a shell of an old lady and we can't get through to her. She was powerhouse, always the first to help others. A Guider, bellringer, Church person, Choir singer, teacher, heart of the community....I miss her so much.

My dad is severely sight impaired, quite stubborn, and is very resistant to getting help or accepting that mum needs a lot of help.
He was never the caring type, in the nicest possible way, so doesn't understand that Mum needs his help.

I am one of 3 Siblings, we all have families and don't live close to my parents. We've managed to do the following - get POA for Dad (we were too late for Mum). They now have meals on wheels, plus a carer going in 4 times a day, plus another carer twice a week. We've also found Driving Miss Daisy, to take them to appointments and out on trips

The positives? they are still safe in their own home, we now have care set up for them, my siblings and I are close and are working well together to sort things out

on the other hand... it all seems overwhelming and however much we do, it doesn't seem enough. We're worried about my Dad's mental health and how he's coping. We all live far away from them, but we are not sure whether they will want to move from the Bristol area, which is where they've always lived. We don't know when or how to change the care situation. We need to start talking to my Dad about financials and long term care, but he doesn't want to hear it.

and on top of this i haven't really come to terms with the fact that my Mum has gone... I miss her. I feel so guilty - i live abroad with my family, so we didn't see as much of them as I wished we had, before her diagnosis. She never got a chance to really know my kids. And my Dad is so struggling with everything, that he shows no interest or care in any of us or our kids. Which is understandable. but the child in me just wants my parents back....

Thank you for listening, and now i'm crying :) But it's good to get it all out....
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Oh bless you @hepalmer ((((((((((((((((((((((hugs))))))))))))))))) and welcome to DTP

Firstly, may I say well done for getting your dads POA organised and arranging carers for your parents. That is a very big step.
Im afraid that dementia is very much a situation of desperately playing catch up - you think youve got it sussed and then everything changes.........
You are grieving for the mum you had who is gone, even though she is still here. Its called anticipatory grief and, sadly, we all understand what that is like.
 

lemonbalm

Registered User
May 21, 2018
1,799
0
Hello @hepalmer . Your post had my eyes watering. I don't think we ever feel we have done enough. You have really done well to arrange the care that you have put in place. Often our parents' generation refuse any help at all. Your parents are fortunate to have such a loving family looking out for them.

I'm glad that you have found the forum. There are lots of us who have been through, or are going through, similar situations to give you advice and support.
 
Last edited:

hepalmer

New member
Sep 30, 2020
6
0
Oh bless you @hepalmer ((((((((((((((((((((((hugs))))))))))))))))) and welcome to DTP

Firstly, may I say well done for getting your dads POA organised and arranging carers for your parents. That is a very big step.
Im afraid that dementia is very much a situation of desperately playing catch up - you think youve got it sussed and then everything changes.........
You are grieving for the mum you had who is gone, even though she is still here. Its called anticipatory grief and, sadly, we all understand what that is like.
thank you @canary, appreciate the virtual hugs....
 

hepalmer

New member
Sep 30, 2020
6
0
Hello @hepalmer . Your post had my eyes watering. I don't think we ever feel we have done enough. You have really done well to arrange the care that you have put in place. Often our parent's generation refuse any help at all. Your parents are fortunate to have such a loving family looking out for them.

I'm glad that you have found the forum. There are lots of us who have been through, or are going through, similar situations to give you advice and support.
thank you @lemonbalm, it feels good to have found this forum....
 

hepalmer

New member
Sep 30, 2020
6
0
Welcome from me too @hepalmer

Sadly most of us understand how you're feeling. I don't think the child in us grows up - ever!
indeed @Bunpoots, my inner child is currently having a tantrum at the unfairness of it all. But as my mum always said "life isn't fair" and I hated that response, and now I do the same to my kids :) Circle of life and all that!
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,258
0
High Peak
indeed @Bunpoots, my inner child is currently having a tantrum at the unfairness of it all. But as my mum always said "life isn't fair" and I hated that response, and now I do the same to my kids :) Circle of life and all that!
All my life, whenever things went wrong or I complained about anything, my mother would always say, 'Well, nobody ever said life was fair!'

That phrase has haunted me. I found myself about to say it to one of my kids and managed to stop myself because I'd hated it being said to me. But... I still say it to myself because unfortunately it is true :(
 

anxious annie

Registered User
Jan 2, 2019
808
0
Hi @hepalmer , welcome to TP. I know how difficult it is caring from a distance.
You and your siblings have done so much to support your parents already.
Everything seems to be closed down with covid, but is it worth getting your mums name down for a Day Centre to give your dad a beak for 2/3 days a week . Some charities provide companionship, perhaps this could be sorted for a few hours a week so your dad could do something for himself, whilst your mum was safe at a day centre.
 

hepalmer

New member
Sep 30, 2020
6
0
Hi @hepalmer , welcome to TP. I know how difficult it is caring from a distance.
You and your siblings have done so much to support your parents already.
Everything seems to be closed down with covid, but is it worth getting your mums name down for a Day Centre to give your dad a beak for 2/3 days a week . Some charities provide companionship, perhaps this could be sorted for a few hours a week so your dad could do something for himself, whilst your mum was safe at a day centre.
thank you, a great idea!
 

hepalmer

New member
Sep 30, 2020
6
0
All my life, whenever things went wrong or I complained about anything, my mother would always say, 'Well, nobody ever said life was fair!'

That phrase has haunted me. I found myself about to say it to one of my kids and managed to stop myself because I'd hated it being said to me. But... I still say it to myself because unfortunately it is true :(
I head you, @Jaded'n'faded ! did you find a better phrase to use with your kids?
 

Melles Belles

Registered User
Jul 4, 2017
1,213
0
South east
I often told my kids (when they were younger) that life is full of doing things we don’t want to. I think they will have found that out by now.
Also used to tell them that I wasn‘t on this earth to be popular when they didn’t like me doing something.
 

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