Later stages

Emmy

Registered User
Apr 11, 2008
7
Horsham, West Sussex
Hello everyone, I'm new although I've been caring for my husband for about five years now. He is in the later stages of early-onset dementia and I think he first had symptoms about ten years ago. Chris is still at home supported with a continuing care package. I should be glad that he has everything he needs and I am told by the CPN that he looks very healthy. I have fought very hard to get him a super care package and to keep him at home but now I am feeling very lonely indeed. I have sorted out everything to meet his needs but I feel very bad. Anyone got any advice?:(
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,113
Kent
. Anyone got any advice?:(
Hello Emmy. :)
I can only ask you to come and join us.

Talking Point [TP] is here to offer virtual support, and all of us who care 24/7 find it a lifeline.

Do you manage to get out at any time whilst the support for your husband is in place, or would you not enjoy going anywhere anyway?

Just post whenever you want, there is always someone here.

Love xx
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
I can only ask you to come and join us.
Hi Emmy

I can only second Sylvia's invitation.

There are several of us caring for spouses, and we all know about the loneliness and isolation that involves. We come here for virtual companionship, and support when things get tough.

My husband is now in care, but I'm still pretty isolated because I organise my days round going in at meal times to feed him.

TP is a lifeline.

Love,
 

christine_batch

Registered User
Jul 31, 2007
3,388
Buckinghamshire
Hello Emmy,
Welcome To Talking Point.
My husband is in last stage and in E.M.I. Unit.
In no time at all you will find there are lots of friends here.
We share and go down this path together.
Best wishes
Christine
 

gigi

Registered User
Nov 16, 2007
7,788
66
East Midlands
Hello...

Welcome to TP Emmy,

I took early retirement to care for my husband who has Alzheimers/Vascular Dementia.

You've been caring for a long time

[QUOTE I have fought very hard to get him a super care package and to keep him at home but now I am feeling very lonely indeed. I have sorted out everything to meet his needs but I feel very bad. Anyone got any advice? ][/QUOTE]

That says it all!!!

Stay with us..join in..you'll find so much support here..it may help to lessen your loneliness.
Don't feel bad..you have done and are still doing your best.

We're all here for each other..:)

Love gigi xx
 

lesmisralbles

Account Closed
Nov 23, 2007
5,543
Stay with us..join in..you'll find so much support here..it may help to lessen your loneliness.
Don't feel bad..you have done and are still doing your best.

We're all here for each other..

Second that Gigi
BarbX
 

lesmisralbles

Account Closed
Nov 23, 2007
5,543
Quote thing, sorry everyone, still cannot do it

Trying, yes I know I am
But the quote thing, cannot get it right.
BarbX
 

Emmy

Registered User
Apr 11, 2008
7
Horsham, West Sussex
Joining in

Thanks for replying - and for your messages of support. I felt a glimmer of hope when I read them. It's not easy being there for someone who is locked inside themselves as Chris is now and I think that joining talking point is both a measure of how low I have become and also a step forward. It is great to know that there are people out there who can understand where I'm coming from and I'm looking forward to joining in the talk! There is not much I can say about Chris except that he is able to stand but can't do anything else and at night when I'm alone with him it's like having a ghost standing next to you. I hug him sometimes, hold his hand and say hello, often he doesn't respond and sometimes he pushes me away. The weird thing is I still care about him and want him to be happy. I don;t do much for him now except give him his meds and put him to bed although at the moment there is a bit of an agency carer crisis and so I have been feeding him and changing at night. I do wonder more frequently how long this situation will carry on and if I can do another winter - the last one was horrible. I'm really doing a day at a time now and often find myself crying. Of course I've got no idea what it is like for Chris as he can't tell me but the professionals say he looks very good and the fact that he does seem to be thriving (in a way)makes me want to carry on with the homecare. Thanks again.
 

lesmisralbles

Account Closed
Nov 23, 2007
5,543
Enny, my Ron is a little like that

But what do you want ?
Can you cope, do you want to?
Do you need more help from social services.
Tell us your need's. Everyone is here to help, because - all of us are in some way affected.
Barb & Ron :)
 

Emmy

Registered User
Apr 11, 2008
7
Horsham, West Sussex
Joining in 2

Sylvia, I do get time to do things in the day time and I have a part time job but I have stopped enjoying the things that I do. For some years I had a camper van and last summer had some really good days out but I have to be home with Chris in the evening, over night and at weekends and I don't enjoy going away in the van or out like I used too. This is partly because my social circle has shrunk and also because lately I have begun to notice that Chris isn't there when I do go out and I really really miss him so going out gives me pain not pleasure. I've got two dogs and I walk them everyday but I feel like my brain is being wiped clean - i can't explain - but its like emptiness These feelings are all new to me and seem to have started when we brought Chris downtairs to sleep. I am using the conservatory as his bedroom and knocked down the porch to build a wetroom for him. Agency carers come in and get him up, shower. dress and feed him and he spends most of the day asleep in a chair. After tea he is awake and stands up (That's all he i able to do) until he gets sleepy and then I put him to bed. It's a very monotonous routine. The house is totally quiet except for the TV and we live in a very quiet neighbourhood. I hate myself for moaning and feeling dissatified.
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
The weird thing is I still care about him and want him to be happy
Emmy - I do so emphasise with your post. You will see the stage I am at if you see other posts (maybe the one 'new phase'). David is due home on Monday after rehab (following serious fall).

Like you I have reorganised beds downstairs, wetroom shower - how long can we sustain this?? :confused: At present I am giving up my interests just to be available for David - is that fair I wonder :confused::confused: Anyway I want to give it a fair trial and then over to the Gods .... time will tell.

Keep posting and best wishes Jan
 

christine_batch

Registered User
Jul 31, 2007
3,388
Buckinghamshire
Dear Emmy,
It is not moaning at all. As for friends, they fell by the wayside when Peter was diagnoised with AD.
If it had not been for my family and T.P. and our Alzheimer's Branch I would not have got through it.
How about doing a O.U. Course from home?
We are all in this together, some further down the path than others but a very important but there are so many Carers' on T.P. to give support, virtual friendship.
Best wishes
Christine
 

helen.tomlinson

Registered User
Mar 27, 2008
541
Hello Emmy

I am just catching up with your thread and although my husband is not at the same stage as yours, I really do understand the lonliness. I miss what we had. I am dreading missing even more of him if/when that happens.

Your house sounds like it has become a rest/care/nursing home to cater for your husband's needs. However, it is also your home and I wonder whether you can find ways of making it your home again by inviting a friend around for supper or just a coffee. I know what you mean about friends disappearing but sometimes asking friends for something specific helps them know what to do.

Love and best wishes

Helen
 

Emmy

Registered User
Apr 11, 2008
7
Horsham, West Sussex
Joining in again

My computor has been of line and I am not used to this system so It took me a while to get back. Thanks for all the posts and genuine concern. There has been such alot of change recently that it got on top of me. I have been away for three days and it was good to see some new faces. Also, I have been applying for jobs like crazy and today I was offered one. I think this will be the change I need. When I got back I found that Chris had fallen on the floor in the showerroom and has got cuts on his head and the doctor had been to see him because of a chest infection. My daughter thinks I need to look at things differently and told me a story. A girl was told to look around a room and remember everything that was red. Then she was told to mention something that she had seen that was blue and she couldn't do it. I think she is right because when the man phoned me today and offered me the job I stopped crying and started to think about starting something new and how it would upset my routines! I feel better knowing that there are other people who know what it is like to be in this situation so thanks for getting on line.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,113
Kent
. A girl was told to look around a room and remember everything that was red. Then she was told to mention something that she had seen that was blue and she couldn't do it. .
You have a very perceptive daughter Emmy. I shall try to remember that one.
We are all in danger of becoming blinkered and seeing only our lives and how they are affected by dementia.

Good luck in your new Job. I hope you see many colours.

Love xx
 

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
Best of luck with the job when you start Emmy, it will undoubtedly open up your horizons again and help boost your spirits.

With regard to your home being so quiet when the TV is not on, could you not have a radio playing low as 'background'?
Maybe something restful like R3 or Classic FM (or Planet Rock :cool:, heck, I don't know what your tastes in music might be!)
I know family 'habits' differ, but Mum has always used the radio just about all the time - it doesn't stop you doing other things like TV does - and I have inherited it.

Best wishes Emmy, please keep us posted how things go.