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Dads early onset dementia

Melsbels

New member
Nov 28, 2020
5
0
Hi everyone, sorry this is a bit of a long one. my father (64) received his diagnosis three weeks ago. He is very much in denial and already pushing back on any support offered like his community nurse wanting to come and offer post diagnosis support and occupational health coming to chat . My sister and I care for him as he lives alone. I am a mum of three 6,4 and 8 months) my sister just married and works full time. Dads been showing signs of dementia for last 2/3 years and it’s been an uphill battle to get the diagnosis. He no longer drives, can’t cook anymore, doesn’t leave the house unless we are taking him to shop, he has zero socialisation opportunity exempt my sister and I. We try and encourage activities at home like listening to music, painting by numbers, jigsaws etc but he finds this too much and just gives up. Because he isn’t keeping his mind active I worry so much about how quickly he is going to deteriorate. Can anyone share my experiences where a parent has been diagnosed with early onset dementia? We’re you offered medication ? Did it help? How long did it take for you to notice declines. We already have power of attorney set up, but when did you actually have to start using that?
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,107
0
Nottinghamshire
Welcome to DTP @Melsbels

I'm sorry to hear about your father's diagnosis at such a young age. We do have other members who are in a similar situation to you and hopefully they'll be along soon.
It's not unusual for people with dementia to refuse help. Would your dad accept help if you told him it was to help you? I told my dad I had a friend who was looking for a job. Or perhaps he would accept seeing the nurse or OT if you told him they were training and needed to practice with someone who didn't really need the help 😉

Your dad is probably scared, I know mine was, and it's easier not to try than to try and fail. I found this very useful when it came to getting dad to do what needed to be done

.
 

jaymor

Volunteer Moderator
Jul 14, 2006
13,442
0
England
Hi @Melsbels and welcome to DTP.

My husband was diagnosed at 62 and like your father was showing signs a couple of years before which we thought was stress from work.

My husband was diagnosed with Alzheimer’s which there is medication for and I feel my husband was helped greatly by his prescription for Aricept. Vascular there is no medication as for Alzheimer’s but symptoms can be made easier by medication.

My husband had no hobbies, work and family were his life so once work stopped it was very difficult to get him motivated. We never had care within the home, he would not tolerate anyone in the house. My life saver was being able to take him out in the car everyday, life outside the house was much easier than inside the house.

Sadly I can’t be of much help with dealing with how to help dealing with your Dad being on his own as I was retired so able to be with my husband.

Bunpoots idea sounds worth trying. If you find someone who might be happy to go in and just start off as someone going for a chat and once your Dad gets used to them being there then maybe an offer to help your dad do something might work. He may take to being helped to do something himself better than someone coming in to do it for him. Slowly that would change as he progressed.

Keep posting, there is always someone who can help with answers.
 

Melsbels

New member
Nov 28, 2020
5
0
Thanks so much for your replies. Can I ask I. Your experiences was the speed of decline a steady slow decline, especially with medications on board? I will certainly try the suggestions you’ve provided so that hopefully he is more on board with people coming to the house.
 

jaymor

Volunteer Moderator
Jul 14, 2006
13,442
0
England
My husband was diagnosed in 2005 and passed away in 2016 so 11years post diagnosis. My friends husband died just three years post diagnosis. I also have a friend whose husband was invalided out of the army aged 45 with vascular dementia, he is now 68 and still managing extremely well. Dementia Is difficult to put times on, everyone follows a different path.

A UTI can cause a downturn as can a hospital stay. There is a recovery from both but sometimes not quite back to where they were before the problems.
 

Melsbels

New member
Nov 28, 2020
5
0
It’s such a cruel illness. That’s what frightens me that we have no idea how it’s going to affect him. Than you for sharing.
 

canary

Registered User
Feb 25, 2014
14,379
0
South coast
Its best not to look too far into the future for this very reason @Melsbels
Its does mean, though, that not everything that you read about will happen to your dad. For example - everyone fears the time that the person with dementia no longer recognises them, but mum knew me and most of the family right up to the end.

The best thing is to sort out the legal things - POA, will, Attendance Allowance, Council Tax exemption - and then make the most of the time with your dad. Deal with problems as and when they arrive.
 

Melsbels

New member
Nov 28, 2020
5
0
Its best not to look too far into the future for this very reason @Melsbels
Its does mean, though, that not everything that you read about will happen to your dad. For example - everyone fears the time that the person with dementia no longer recognises them, but mum knew me and most of the family right up to the end.

The best thing is to sort out the legal things - POA, will, Attendance Allowance, Council Tax exemption - and then make the most of the time with your dad. Deal with problems as and when they arrive.
Thank you for your reply. Yes I think your right I have to try focus more on present time. POa, will and council tax are all already taken care of. Is attendance allowance the same as carers allowance? If so that is next on our list to sort.
 

canary

Registered User
Feb 25, 2014
14,379
0
South coast
Is attendance allowance the same as carers allowance?
Its pretty much the same as PIP, sorry, I hadnt clocked that he was under 66yrs old. Carers Allowance is for the carer (presumably you) and in order to claim it the person you are caring for has to have PIP or Attendance Allowance
 

Abbey82

Registered User
Jun 12, 2018
95
0
Hi @Melsbels

My Dad was diagnosed at age 59, he's just turned 62 and is currently under a Section 3, awaiting a new Nursing Home. Unfortunately, 90% of drugs he tried have not worked, or had an opposite effect. The only one that has worked has been Quetiapine. When he was diagnosed, it was already fairly affected, but he was in denial too. We had an extension built for him and my mum to move in with us, but he only lasted 8 months before he had to be Sectioned because of his behaviour and constant pacing, he was eventually able to come home, but because the drugs didn't full work unfortunately he was sectioned again and then wasn't able to come home. He has had quite a rapid progression.

Its been a rough ride and I'm sorry I cant paint a better picture. Its a struggle BUT everyone is different, my Dad's is FTD and Alzheimers, and we have had to fight for everything, but we think we've found a more suitable Nursing home now, who can truly deal with the complexities of Dementia, this will be his 3rd in 12 months.

Try and always live in the now and take each day as it comes, good and bad, once again, everyone is different, some people take years to be fully effected and others it can be much sooner.
 

Melsbels

New member
Nov 28, 2020
5
0
Hi @Melsbels

My Dad was diagnosed at age 59, he's just turned 62 and is currently under a Section 3, awaiting a new Nursing Home. Unfortunately, 90% of drugs he tried have not worked, or had an opposite effect. The only one that has worked has been Quetiapine. When he was diagnosed, it was already fairly affected, but he was in denial too. We had an extension built for him and my mum to move in with us, but he only lasted 8 months before he had to be Sectioned because of his behaviour and constant pacing, he was eventually able to come home, but because the drugs didn't full work unfortunately he was sectioned again and then wasn't able to come home. He has had quite a rapid progression.

Its been a rough ride and I'm sorry I cant paint a better picture. Its a struggle BUT everyone is different, my Dad's is FTD and Alzheimers, and we have had to fight for everything, but we think we've found a more suitable Nursing home now, who can truly deal with the complexities of Dementia, this will be his 3rd in 12 months.

Try and always live in the now and take each day as it comes, good and bad, once again, everyone is different, some people take years to be fully effected and others it can be much sooner.
Hi Abby, thanks for sharing, I’m so sorry to hear about your dad’s experience, hopefully the new nursing home will be a help. We had occupational health come to his house today and someone is going to try and help him get out a bit more. Waiting on a spect scan aswell. This whole thing is a minefield.
 

silkiest

Registered User
Feb 9, 2017
204
0
Hi @Melsbels, are the POA 's already registered? If not its best to register them straight away. Gp surgeries and hospital want to see now before they will discuss another persons health issues with you. Also all
 

silkiest

Registered User
Feb 9, 2017
204
0
Hi @Melsbels , sorry pressed the button early. All utility companies and insurance companies now either want the pwd on the phone to confirm you are acting for them or want to have a copy of the POA on their records. If he cannot easily deal with bills already its probably time to start the process with his utility companies and bank. We went to the bank with both my mum and mum in law before they got too bad and arranged POA cards - it made it so much easier to place online orders for delivery, get out money when they needed it etc. Neither of them thought it was necessary as "of course they didn't have memory problems" but they were happy that I then did not have to make two trips to first get their card for me to use for shopping etc then to visit again. I would try making it your problem - I'm tired, stressed etc and need your help to save me time/ make things easier for me. Hopefully it will make the protective dad in him come out.
 

Nic bwfc

New member
Jan 8, 2021
5
0
It’s such a cruel illness. That’s what frightens me that we have no idea how it’s going to affect him. Than you for sharing.
It is so cruel 😢 my dad has been diagnosed recently with posterior cortical atrophy. Hes only 62 fit healthy never been ill Theres very small things i have noticed. But if you didn'tknow him you would not even notice. My grandad (not his dad)had vascular dementia. My heads all over the place as I know whats coming eventually. Life is so cruel. I can't cope with this its my dad (sorry).Can anyone help
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,107
0
Nottinghamshire
Welcome to Dementia Talking Point @Nic bwfc

I’m sorry you need to be here.. I knew what was coming when my dad was diagnosed too but, having seen 4 family members with dementia, it’s not always as bad for everyone.

Take everyday as it comes and keep posting.
 

Nic bwfc

New member
Jan 8, 2021
5
0
Welcome to Dementia Talking Point @Nic bwfc

I’m sorry you need to be here.. I knew what was coming when my dad was diagnosed too but, having seen 4 family members with dementia, it’s not always as bad for everyone.

Take everyday as it comes and keep posting.
Thankyou so much for your kind words x