my wife was diagnosed with parkinsons 8 years ago and with lewy body dementia 4 years ago her condition seems to be getting progressively worse it is

charliefarley

New member
Mar 23, 2024
3
0
such a cruel disease caring for someone you have loved for over 50 years our life has changed in so many ways , I really struggle to get through most days, it is a very lonely life my great comfort is music and going out walking when i can arrange a sitter , I do fear for the future because you know your loved one will not get better, to all carers out there you are very special human beings we soldier on xx
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,489
0
Newcastle
Hi @charliefarley and welcome to Dementia Support Forum our friendly and helpful community of people with experience of many aspects of dementia. I am sorry to hear about your situation. Now that you have joined us I hope that you'll feel supported by being amongst people who truly understand and empathise.
 

PepaK

Registered User
Jan 28, 2024
11
0
I’m dealing with a similar situation. It is so hard. But you will find lots of caring support on this forum. Don’t be afraid to ask anything or simply vent. We all get it.
 

charliefarley

New member
Mar 23, 2024
3
0
I’m dealing with a similar situation. It is so hard. But you will find lots of caring support on this forum. Don’t be afraid to ask anything or simply vent. We all get it.
the last few days have been really challenging , my wife hardly speaks and I now find I need to wash , dress and take her to the toilet , when she was well we had such a full life lots of holidays weekends away and meals out , this the hardest think to except, some days I just want to walk out the door and carry on walking but I expect lots of carers feel that way.
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
5,765
0
Hello and welcome from me also @charliefarley. Caring for a loved one can be a challenging and lonely job. If you have not already done so it might be a good idea to contact your local adult social services to arrange a needs assessment for your wife and a carers assessment for yourself.
 

charliefarley

New member
Mar 23, 2024
3
0
some days i look at my life and think what is the point in carrying on I do not have a life it is an existence , then i think about my children and grandchildren , I have some fantastic memories but they do not seem to make up for the hell that dementia has caused I am also bitter towards friends who have a normal life , but l suppose these are all normal reactions for what carers go through, My wife has an appointment tomorrow with a dementia consultant we will see what happens have lost faith with the nhs
 

Chizz

Registered User
Jan 10, 2023
3,506
0
Kent
Hi @charliefarley
Welcome from me too to this forum.
I know how you feel. My OH and I have been together for coming up to 57 years and also had a full, fun, and enjoyable life. I have been full time caring for my OH for 7 years, starting with multiple myeloma bone cancer and straight into Alz's.
Yes it's v lonely without your partner to chat to, debate news, argue points of view, without sharing all the things we did and shared. The enormous emotional investment can be v tiring. You feel that only those in your position can truly empathise, but there are plenty, unfortunately, in that position.
You will need some separate time for respite, headspace, and if you aren't getting any respite care then you need to look into this. In my area, I get a sitter from Mind to be with my OH for 3 hrs per week so that I can go out - it's invaluable.
Do you have a supportive family that can help? I'm lucky enough to have my son no.2 coming one evening every week so that I can go and play bridge with my friends - also invaluable (even if the cards may be against you all evening, as, of course, can happen!).
You may feel like walking away sometimes. However, whenever that feeling comes over me I realise that this is now the time that my OH needs me most in her darkest hours, that are only going to get worse; and I know she'd do exactly the same for me if our positions were reversed.
One has to keep on keeping on. I can't see light at the end of the tunnel and I have no idea how the tunnel is, but that doesn't really matter. It is as it is. One has to accept the situation.
A virtual arm round your shoulder.
Best wishes.
 

canary

Registered User
Feb 25, 2014
25,048
0
South coast
some days i look at my life and think what is the point in carrying on I do not have a life it is an existence , then i think about my children and grandchildren , I have some fantastic memories but they do not seem to make up for the hell that dementia has caused I am also bitter towards friends who have a normal life , but l suppose these are all normal reactions for what carers go through, My wife has an appointment tomorrow with a dementia consultant we will see what happens have lost faith with the nhs
When you get to feel like this it means that you need more support.
As the disease progresses (and especially as you reach mid-stage dementia) it is almost impossible to deal with it 24/7, with no respite or support. You will have to start delegating tasks to others.

The dementia consultant is unlikely to be able to help in these things, apart from maybe pointing you in the right direction. The people you need to contact are Social Services for a needs assessment. Carers can help with washing and dressing and day care may be offered. Local organisations such as MIND, Age UK, and Crossroads/Tu Vida may be able to help with things like a befriending/sitting service. giving you some respite

These are things that people with dementia and/or their carers often resist, but it is something you both need, even if you dont want them. I tried to do everything myself and reached carer burnout. I found myself thinking the same thoughts as you. I now have carers coming in to get him washed and dressed and have a Home Help (from Age UK) to help with laundry and housework, and a gardener to keep the garden OK. They have been a godsend and are wonderful people. OH can now do very very little, but he is still at home and if I were not here he would have to move to a care home.
 

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