This strange life !

[Lady M]

perhaps a little late perhaps I just didn’t want to admit........but what a strange life I am now in......
OH is the PWD......so life revolves around him.....
So what am I.....
Yes we live in the same place.....yes we share a table to eat........yes we sit in the same room.........but I feel that is where it ends......
No sharing of anything else.........
Little communication.........then only about himself........are tablets due?......when will the dr visit?...nobody has been to see him!........
I know that empathy has long gone.......I know that his life is difficult........I know that he is the PWD !
I feel I am alone with someone,!
I suppose it’s that I’m grieving.........just like others do, for the life we planned and expected.....it’s sad
Replies not necessary...I just feel better putting this down......
Another day...and we cannot change anything.....except to continue this horrible journey.
Like so many on TP!
Thanks for reading!

 

[Grannie G]

Sometimes it`s less painful if you can put yourself on automatic pilot @Lady M. I used to manage this sometimes when the feelings of despair were not too raw.

 

[AliceA]

I hear you, writing your feelings down helps, it just gets them out the head and constantly buzzing out of reach.
You are grieving, we all are but perhaps when we face the loss, accept this is the new normal we heal a little.
Perhaps find new ways, perhaps to be our own best friend, hold tight. Xxxx

 

[maryjoan]

perhaps a little late perhaps I just didn’t want to admit........but what a strange life I am now in......
OH is the PWD......so life revolves around him.....
So what am I.....
Yes we live in the same place.....yes we share a table to eat........yes we sit in the same room.........but I feel that is where it ends......
No sharing of anything else.........
Little communication.........then only about himself........are tablets due?......when will the dr visit?...nobody has been to see him!........
I know that empathy has long gone.......I know that his life is difficult........I know that he is the PWD !
I feel I am alone with someone,!
I suppose it’s that I’m grieving.........just like others do, for the life we planned and expected.....it’s sad
Replies not necessary...I just feel better putting this down......
Another day...and we cannot change anything.....except to continue this horrible journey.
Like so many on TP!
Thanks for reading!

I know I could have written this - and so many others of us... I am truly with you on this.
You have listed all the grindingly, wearying, soul destroying things that is life with a PWD.
To the people 'on the outside' dementia is just forgetfulness, but for us on the inside it is so much more. I told someone this week that I felt my OH had been taken over by aliens - you will understand that - they didn't!

Everything is about the PWD, and nothing about you, or me.....

Have you had a Carer's Assessment ? What can be done is fairly minimal, but still worth doing.

I had a creative thought a couple of weeks ago - the standards around here are slipping - and I know why - I do absolutely everything - as you do - part of my caring role is to spend around three hours everyday playing scrabble - which I used to enjoy but now I am horribly bored with. That is obviously 21 hours at least per week, when there are other things needing doing.... so I have employed a cleaner, just for 1.5 hours a week, cost £20, really worth it.

Everything is about them, but sometimes a little wriggle around in our own minds can come up with something that makes our lives just a little more bearable..

 

[Guzelle]

I could’ve written it too Lady A. Our daughter has a 3 week old baby and he doesn’t want her to visit. He says the baby has nothing to do with him. He calls the baby boy a brat! He is ok while she is here.

He hates her husband when he can remember who he is. We could go on holiday with them but he won’t go. He would probably spoil it for everyone aswell.

I feel isolated a lot of the time. I look forward to seeing our daughter and grandson but I always have to listen to him being nasty about them before they arrive. We all go out for coffee and he enjoys it.

I have to have an operation soon and I am arranging respite he is not going to like that but I have no option. Nobody in the family will look after him it’s too much for anyone.

He does seem to be sleeping a lot more these last few weeks. 15 hours one day last week.

 

[MoodyC]

Thank you Lady A - you described it perfectly. The isolation is unbearable at times, isn't it?
Even going out feels difficult when we need to find a decent accessible loo. I am beginning just to go to places where I know there is one.

I too have a cleaner. Wouldn't have done it as I saw it as using money to do something that I was capable of but I had a hysterectomy three months ago and am now grateful to know that it's one thing less to think about. xx

 

[DennyD]

perhaps a little late perhaps I just didn’t want to admit........but what a strange life I am now in......
OH is the PWD......so life revolves around him.....
So what am I.....
Yes we live in the same place.....yes we share a table to eat........yes we sit in the same room.........but I feel that is where it ends......
No sharing of anything else.........
Little communication.........then only about himself........are tablets due?......when will the dr visit?...nobody has been to see him!........
I know that empathy has long gone.......I know that his life is difficult........I know that he is the PWD !
I feel I am alone with someone,!
I suppose it’s that I’m grieving.........just like others do, for the life we planned and expected.....it’s sad
Replies not necessary...I just feel better putting this down......
Another day...and we cannot change anything.....except to continue this horrible journey.
Like so many on TP!
Thanks for reading!

So very accurate. Add to this, for me at least, is the insufferable 'intrusion', of all the professionals, organisations, and at work my employer, having to expose our personal lives. Freedom of choice, free will feels robbed, the horrible feeling of being examined, justifying actions and decisions.

 

[Lawson58]

perhaps a little late perhaps I just didn’t want to admit........but what a strange life I am now in......
OH is the PWD......so life revolves around him.....
So what am I.....
Yes we live in the same place.....yes we share a table to eat........yes we sit in the same room.........but I feel that is where it ends......
No sharing of anything else.........
Little communication.........then only about himself........are tablets due?......when will the dr visit?...nobody has been to see him!........
I know that empathy has long gone.......I know that his life is difficult........I know that he is the PWD !
I feel I am alone with someone,!
I suppose it’s that I’m grieving.........just like others do, for the life we planned and expected.....it’s sad
Replies not necessary...I just feel better putting this down......
Another day...and we cannot change anything.....except to continue this horrible journey.
Like so many on TP!
Thanks for reading!

You sound as if you and I are on the same page. And sadly I think it is titled Resignation.

Resigned to continuing to caring for this other person. Resigned that we have had to give up what we had planned for our future. Resigned that that our time is running out with no expectations for ourselves.

Mostly sacrifice is not considered in terms of what carers go through but that's what it is. And the worst part is that we feel guilty because we we don't think we should feel like that.

No advice, just sympathy.

 

[marionq]

@Guzelle that is truly horrible. To cut you off from your grandchild is almost unforgivable but you will know if this all dementia or a bit of his earlier disposition. Very hard to take.

 

[kindred]

So very accurate. Add to this, for me at least, is the insufferable 'intrusion', of all the professionals, organisations, and at work my employer, having to expose our personal lives. Freedom of choice, free will feels robbed, the horrible feeling of being examined, justifying actions and decisions.

Oh yes, I feel I am in the wrong all the time. I so agree.
warmest, Kindred.

 

[Lady M]

Thanks for the responses z,
I know that so many others feel the same!!
Denny D....how right you are...here it is a daily intrusion....whilst appreciate these services are needed for OH .......it is as though the care staff...District Nurses....( both numerous times daily) ...catheter nurse...Gp...Diabetic team...O/Ts not only do I live no a strange life but feel my own home is taken over by others....then of course the equipment! And a bathroom so full of requirements ’ it resembles a mixture of a hospital ward and a pharmacy!!
Add to that the murmurous letters , phone calls , appointments.....and checking on....
All for this person who lives in the same place!!!!
It sure is a strange life!!!!

 

[DennyD]

And yet we carry on . . . for all the reasons talked about on TP before, all so personal, and truthful. But why do they, those who purport to give us support make me feel so guilty, incompetent, selfish?