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Dementia is hard on the prime carer too

sharpy

Registered User
Feb 10, 2015
14
My dad is the prime carer of mum who has lewy body dementia. He puts a brave face on it all and says he is coping fine but i know he is finding it hard. He loves my mum dearly and wouldnt do anything else but care for her but its alot of pressure on him. My dad does everything (my sisters and i help whenever we can) plus my grandma my mums mum is very ill so its alot on my dads shoulders. I think what my dad misses most is having an adult conversation as he can no longer have a proper one with my mum. He obviously talks to me and im glad to be there for him and want to be for my lovely parents. Just had to get that off my chest.
 

opaline

Registered User
Nov 13, 2014
182
We have a carers centre in our area and they organise lunches, outings, etc where we can meet other people in the same boat as ourselves. There may be something similar in your area? x
 

nae sporran

Volunteer Host
Oct 29, 2014
7,086
Bristol
My dad is the prime carer of mum who has lewy body dementia. He puts a brave face on it all and says he is coping fine but i know he is finding it hard. He loves my mum dearly and wouldnt do anything else but care for her but its alot of pressure on him. My dad does everything (my sisters and i help whenever we can) plus my grandma my mums mum is very ill so its alot on my dads shoulders. I think what my dad misses most is having an adult conversation as he can no longer have a proper one with my mum. He obviously talks to me and im glad to be there for him and want to be for my lovely parents. Just had to get that off my chest.
Your dad is lucky to have you, Sharpy. It is hard, lonely work looking after someone who only understands you some of the time, then forgets 10 minutes later. When your lovely lady's family take you for granted and your own are too selfish to notice, it gets too much. Like your dad, I wouldn't do anything else but care for her.

Well done you.
 

angecmc

Registered User
Dec 25, 2012
2,108
hertfordshire
Hi Sharpy, I was in the same position as you two years ago, dad was prime carer for my Mum, she also had Lewy bodies, it is said to be one of the harder dementias to deal with, although from reading on here, I think they are all bad. I supported my Dad until we were both on our knees as Mum was awake all day and night and became aggressive. It broke Dads heart that we had to put her into a care home, but two years on we are getting there. During the time she was at home, nobody ever thought about the carer, I found myself constantly saying to SS, "but what about my Dad? He is suffering too" it usually fell on deaf ears. GPs were the same, they were only interested in sorting Mum out so she could stay at home. There never seemed to be any money available to give Dad respite he desperately needed. I remember feeling useless holding him as he cried in desperation. I was glad and still am, to help my parents as I know they would have done the same for me. Xx

Ange
 

henfenywfach

Registered User
May 23, 2013
332
rct
My dad is the prime carer of mum who has lewy body dementia. He puts a brave face on it all and says he is coping fine but i know he is finding it hard. He loves my mum dearly and wouldnt do anything else but care for her but its alot of pressure on him. My dad does everything (my sisters and i help whenever we can) plus my grandma my mums mum is very ill so its alot on my dads shoulders. I think what my dad misses most is having an adult conversation as he can no longer have a proper one with my mum. He obviously talks to me and im glad to be there for him and want to be for my lovely parents. Just had to get that off my chest.
Hi!
I care for my dad. He has dementia with lewybodies. My dad is my mums carer has been for 30yrs..she has a spine problem and suffers depression.
Dlb for us changes from one minute to the next...what he liked at 9am or is feeling at 9 has changed by 10am..no warning.or signals..
The added dangers of just dropping when bp drops or lackbof perception and different mobility mean you cant take your eye off the ball for s minute!
Im in my 40s and been caring for him for approx 2 to 3 years...i cant imagine how your dad feels!

The best thing you can do other than look at the house through her eyes to see what needs to be changed for her..like patterns can be bees or ants..white things hard to see..or black mat a black hole..
Your dad needs a time out every week..so it becomes part of your mums routine..get a sitter in or a friend in...you all need time out especially your dad..library coffee old mates catch up or just sit in the park or a pint and a newspaper...contact the carers projects age uk and the society..there are activities he can join with like minded people..
Its important he doesnt try and do it all by himself!..he probably insists..loyalty and all that..but by having time out hes fresher and will be in better health for your mum...
Best wishes all

Sent from my GT-I9505 using Talking Point mobile app
 

Witzend

Registered User
Aug 29, 2007
4,289
SW London
Hi Sharpy, I was in the same position as you two years ago, dad was prime carer for my Mum, she also had Lewy bodies, it is said to be one of the harder dementias to deal with, although from reading on here, I think they are all bad. I supported my Dad until we were both on our knees as Mum was awake all day and night and became aggressive. It broke Dads heart that we had to put her into a care home, but two years on we are getting there. During the time she was at home, nobody ever thought about the carer, I found myself constantly saying to SS, "but what about my Dad? He is suffering too" it usually fell on deaf ears. GPs were the same, they were only interested in sorting Mum out so she could stay at home. There never seemed to be any money available to give Dad respite he desperately needed. I remember feeling useless holding him as he cried in desperation. I was glad and still am, to help my parents as I know they would have done the same for me. Xx

Ange
Just today I have seen something in one of the papers about 'helping to relieve the isolation and loneliness of dementia sufferers.' Nothing about carers, who are so often overlooked. Also, I think it is often assumed that they have all the time and patience in the world, and are only too happy to give up their entire lives, or at least the greater part of them, to caring.
 

Lilac Blossom

Registered User
Oct 6, 2014
564
Scotland
I have been caring for OH since 1999 when he was diagnosed CLL and more recently vascular dementia so it is 24/7. It is no easier for a woman doing the caring than for a man but anyone who has help from family is truly blessed. I do not have family support so can identify with what NaSporran has said. I just long for a wee bit of conversation.
 

Rosie2

Registered User
May 17, 2008
47
My dad is the prime carer of mum who has lewy body dementia. He puts a brave face on it all and says he is coping fine but i know he is finding it hard. He loves my mum dearly and wouldnt do anything else but care for her but its alot of pressure on him. My dad does everything (my sisters and i help whenever we can) plus my grandma my mums mum is very ill so its alot on my dads shoulders. I think what my dad misses most is having an adult conversation as he can no longer have a proper one with my mum. He obviously talks to me and im glad to be there for him and want to be for my lovely parents. Just had to get that off my chest.
After caring for my husband for ten years (he is in care home now) IMO the most important thing you can do for you dad, you are already doing. Letting him talk. I would love to have a daughter like you. The one thing I missed the most was someone to talk to.
 

Blossom64

Registered User
Jan 13, 2015
9
My dad has been main carer for my mum for a few year's now and ad time has gone on he has accepted he needs more outside help, I do what I can but live two hors away and work full time. He started with a carer in the morning but now as mum has problems in the evening including falling a number of times he is getting evening help too. We all miss talking to mum who doesn't speak any longer. I speak to dad twice or once a day to give him supoort. Good luck
 

Kate and jack

Registered User
Jan 19, 2014
159
Southend on sea in essex
No one will ever really understand the extent of looking after a loved one 24 /7 and the pressure and stress it has on your mental,emotional,social and physical health
People need to walk in our shoes for a good few months to see how it can tear you apart.
My dad is the main carer for my mum who is in the 7 th yr of vascular demenia.
I help dad every day of the week ,we are going to get carers in at weekends as it's taking its toll and we need a fresh mind on the care
We can't wait for this turmoil to end if we are honest ,we also don't feel quality for feeling this way either ,my mum used to see people on TV and said don't every let me get like that ,put a pillow over my head if I end up with the disease !!!!!
Mmmm I've never thought about doing this ,but have thought how I strongly agree with assisted sueiside
And I think my mum would have agreed to it too,without a doubt
She wouldn't have wanted this and I'm sure she feels such a burden even tho she hasn't got a clue what's going on anymore
Love to all of you lovely people out there who tend to their loved ones day in day out
We are all truly exceptional human beings ,God bless you all xxxxxx
 

Liz57

Registered User
Dec 22, 2013
184
Its not just carers of those with dementia that are ignored, its carers of anyone. I remember when my husband had his first heart attack. I was sat down by the doctors and told that my husband wouldn't be able to do this, or would need help with that. I remember nodding and saying "yes, I understand" but inside I was screaming "what about me? Who's going to help me with all this, a job and two young children?". Sadly my husband passed away a few years later and within 12 months my mum was diagnosed with Alzheimers and although wiser to the demands of caring, I've become sucked into it again because there really isn't any choice as there are no other family members nearby. It's a disgrace that despite all the promises and claims that carers are valued for the billions we save the government in providing largely unpaid care, in reality there's very little help and support. I've been waiting nearly 5 months for a promised carers assessment.

Sorry, I'll get off my soapbox now :(
 

sharpy

Registered User
Feb 10, 2015
14
Thankyou everyone for all your comments, its good to be able to hear what others in similiar situation then me understand what im talking about and know what to say. Even though my mum doesnt seem like my mum any more she is still my mum and i will continue to love her and support my dad in caring for her as long as they both need me. its unconditional love and both my parents are amazing
 

Kjn

Registered User
Jul 27, 2013
5,833
First time posting

My mum is full time carer for dad with vascular dementia , having coped brilliantly she has started to really struggle and has since been diagnosed with depression and subsequently on antidepressents.
Working full time I do what I can but feel I'm not helping 'her' enough. I think she has some resentment how life was and turned out, she is constantly trying to do everything at once, get on top of every little job.
I have 2 older brothers , 1 takes them out once a week if day off or pops round, the other well.....not much.
I'm on the other end of the phone, ring her daily but when she is down she won't bother me and will stew and get all upset.
She is conscious that occu health said he needs to do some things himself , so I get "he has just sat there all day, doesn't think to do something, sits watching tv, hasn't moved all day" .
I want her to cut herself some slack but struggling to get through to her.
I can go take dad out of the way, go visit etc no problem.
Sorry for ramble I just want to know how best to help her.:(