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Please help 😭

Cheryl09091

New member
May 25, 2022
2
0
Hello to the readers of this forum. Help with navigating a 22 and 17 yr old of their dad in a really bad state of early onset would be helpful. He’s turning 60 next month and deteriorating rapidly from being sectioned for 9 months and getting placed into a home recently. Could go on and on but anyone relate ?? Desperate for help 😭
 

MartinWL

Registered User
Jun 12, 2020
2,029
0
65
London
I am afraid I have not any experience to offer here but as a general point, can you explain more about what the issues are and what help you need?
 

Sarasa

Volunteer Host
Apr 13, 2018
4,859
0
Nottinghamshire
Hi @Cheryl09091 and welcome to Dementia Talking Point. You’ve come to the right place for support and advice. We have quite a few members who have been in similar situations and I’m sure they will be along shortly with their experiences.
In the mean time do have a look around the site as you might find useful information on some of the other threads.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,083
0
Kent
I`m so sad for you @Cheryl09091 A new diagnosis is frightening especially at such a young age.

I`m not sure how the support services are now since covid but hope the following links will help.

 

update2020

Registered User
Jan 2, 2020
207
0
Hello to the readers of this forum. Help with navigating a 22 and 17 yr old of their dad in a really bad state of early onset would be helpful. He’s turning 60 next month and deteriorating rapidly from being sectioned for 9 months and getting placed into a home recently. Could go on and on but anyone relate ?? Desperate for help 😭
Dear @Cheryl09091 - yes we have been in pretty much exactly that situation with a tiny variation over ages and stages but much the same. My deepest sympathy.

Where to start? Both my children struggled with their Dad's illness and it significantly affected their later teens/twenties. We have all come through it but it has definitely left its mark. Details not supplied!

I think a few things helped:

encouraging them to get on with their own lives and not turning them into carers for their Dad (or for me - neither have lived close to me since they left school, but are both now in careers and happily married/partnered);

counsellors - we each independently found counselling and it was really useful for all of us and particularly so since it was private (from each other). I got it via work and later ch, another paid for it privately, and a third via their college. Lots of ways.

difference - each of my children reacted very differently and that was (and still is ) fine. we've had to learn to accept our differences (one talking a lot, the other not; one visiting a lot, the other not, etc etc) and I never expect one child to behave like the other, or criticise one because they are not more like the other.

continuing to have family holidays occasionally regardless of all the differences that arise.

Despite all the difficulties each of my children has been brilliant in their own way, adapting to the horrific experience that you too are going through and supporting me and each other.

I felt immensely guilty that I could not always support them when things were bad because their Dad was still at home and I could not travel to be with them. I wish I had been able to find more care but at that particular stage overnight care was the very hardest to find, and I still regret that.
 

Izzy

Volunteer Moderator
Aug 31, 2003
66,734
0
71
Dundee
Welcome to the forum @Cheryl09091.

I’m so sorry to read about your situation. Your husband is so young. It must be incredibly hard for your all.

I’m glad you’ve found this forum there’s lots of information and advice here. Now that you’ve introduced yourself you will get lots of understanding and support from members.
 

Cheryl09091

New member
May 25, 2022
2
0
many thanks for your reply
Dear @Cheryl09091 - yes we have been in pretty much exactly that situation with a tiny variation over ages and stages but much the same. My deepest sympathy.

Where to start? Both my children struggled with their Dad's illness and it significantly affected their later teens/twenties. We have all come through it but it has definitely left its mark. Details not supplied!

I think a few things helped:

encouraging them to get on with their own lives and not turning them into carers for their Dad (or for me - neither have lived close to me since they left school, but are both now in careers and happily married/partnered);

counsellors - we each independently found counselling and it was really useful for all of us and particularly so since it was private (from each other). I got it via work and later ch, another paid for it privately, and a third via their college. Lots of ways.

difference - each of my children reacted very differently and that was (and still is ) fine. we've had to learn to accept our differences (one talking a lot, the other not; one visiting a lot, the other not, etc etc) and I never expect one child to behave like the other, or criticise one because they are not more like the other.

continuing to have family holidays occasionally regardless of all the differences that arise.

Despite all the difficulties each of my children has been brilliant in their own way, adapting to the horrific experience that you too are going through and supporting me and each other.

I felt immensely guilty that I could not always support them when things were bad because their Dad was still at home and I could not travel to be with them. I wish I had been able to find more care but at that particular stage overnight care was the very hardest to find, and I still regret that.
many thanks for your kind words and reply the counselling route is definitely one I’m looking into for the oldest child but my youngest who is autistic completely refuses to acknowledge him or the situation. Myself and my husband had separated a couple of years before he showed signs of dementia (7 years separated… around 4 years since signs started) but we remained really good friends and stayed married due to business connections etc. since he was sectioned last august and subsequently placed in a home a month or so ago the deterioration has been rapid. He doesn’t acknowledge me when I go to see him always wants to shuffle off when I’m there can’t hold any form of interest whatsoever and I was his whole world even when we separated. The kids haven’t seen him since August before he was sectioned but now he’s in a permanent care home and the environment kinder I’m hoping at least the older child will come along to see him. They are both traumatised by it all xx
 

Jessbow

Registered User
Mar 1, 2013
4,227
0
Midlands
Dementia leves a scar on us as adult- must be horrific for youngsters.

Dont try and encourage them to do anything they dont want to - Do they have positive encouraging male support around them- uncles etc? that they can turn to?
 

canary

Registered User
Feb 25, 2014
18,501
0
South coast
He doesn’t acknowledge me when I go to see him always wants to shuffle off when I’m there can’t hold any form of interest whatsoever and I was his whole world even when we separated.
Im sorry to say that this is typical of late stage dementia.
Dont try and persuade the children to visit - its traumatising enough for adults. I dont see either the children, or their dad, getting anything out of the visit.
 

update2020

Registered User
Jan 2, 2020
207
0
many thanks for your reply

many thanks for your kind words and reply the counselling route is definitely one I’m looking into for the oldest child but my youngest who is autistic completely refuses to acknowledge him or the situation. Myself and my husband had separated a couple of years before he showed signs of dementia (7 years separated… around 4 years since signs started) but we remained really good friends and stayed married due to business connections etc. since he was sectioned last august and subsequently placed in a home a month or so ago the deterioration has been rapid. He doesn’t acknowledge me when I go to see him always wants to shuffle off when I’m there can’t hold any form of interest whatsoever and I was his whole world even when we separated. The kids haven’t seen him since August before he was sectioned but now he’s in a permanent care home and the environment kinder I’m hoping at least the older child will come along to see him. They are both traumatised by it all xx
I agree with @canary - not to worry too much about the children visiting. As I said mine each took a very different approach from visiting often to hardly at all. I did think it was a good idea if they at least visited occasionally, say once a year. I felt that it was better for them to keep in touch and know a bit about what was happening than to live with it only in their imagination. But I didn't put pressure on them to visit. But for a long time visiting was impossible because of Covid so that made our situation different from yours.
 

jugglingmum

Registered User
Jan 5, 2014
6,310
0
Chester
My children are currently 16 and 21 - and it is my mum who has dementia rather than a parent so I do appreciate a very different scenario.

My mum had a crisis when my son was 8 and stayed with us for 3 months that we all found difficult, but in particular she told my son off for his behaviours (he is dyslexic - maybe also dyspraxic - and at that age still couldn't use cutlery normally which caused a lot of tension - he has good fine motor control now). He can't remember the pre dementia grandma that he absolutely adored and found her visits to us and our visits to her increasingly difficult.

I realised he wasn't happy with visiting my mum and sat him down and had a chat and said it was ok not to visit and that he didn't have to.

He chose not to visit anymore and hasn't seen her for a couple of years.

Her presentation has recently changed with a move to a care home (she was in an assisted living flat) and my daughter wants me to speak to my son about it again. But I'm not sure because I don't want to force this on him.

My daughter has had several bouts of counselling from the age of 15 (not connected to my mum - a close friend died in his sleep when they were both 15) and has found it very helpful for some things and not so for others - I think the right counsellor made the difference so maybe enable them to understand that if the first person they see doesn't feel right they try someone else.
 

NickP

Registered User
Feb 23, 2021
30
0
I am so sorry to read about your situation. I'm not sure I have anything helpful to add as no direct experience of the situation you are in, but you have my utmost sympathy.
This really is the cruelest illness and affects absolutely everyone around the PWD.
 

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