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Dementia’s journey

Dutchman

Registered User
May 26, 2017
971
0
73
Devon
Just been to the home to see Bridget. She was asleep but they woke her and brought her to the door to see me. Very vague and disoriented today. She’s surrounded by staff all wanting to do stuff. Open the banana, give her the flowers and I know i wouldn’t have stood a chance on my own caring for her now, especially in these dreadful pandemic times.

But oh the sadness of it all. She looks at me with little comprehension and turns and walks away. I feel so sad for her, not because of her care but because us as a strong vibrant couple is no more and it’s lost to us both.

It’s extremely difficult to describe emotions in words sometimes but I try my best. I feel sorry for myself and for her. And I’m also drifting away very very gradually, day by day, from her and the ordinariness, quite simple life we had. She’s a woman I used to know. And feeling like this makes me feel somewhat awkward and a bit of a deserter.
I’m currently in a car park and miserable. Perhaps a silly film later will cheer me up😄 Peter
 

Pusskins

Registered User
Jun 6, 2020
177
0
New Zealand
Just been to the home to see Bridget. She was asleep but they woke her and brought her to the door to see me. Very vague and disoriented today. She’s surrounded by staff all wanting to do stuff. Open the banana, give her the flowers and I know i wouldn’t have stood a chance on my own caring for her now, especially in these dreadful pandemic times.

But oh the sadness of it all. She looks at me with little comprehension and turns and walks away. I feel so sad for her, not because of her care but because us as a strong vibrant couple is no more and it’s lost to us both.

It’s extremely difficult to describe emotions in words sometimes but I try my best. I feel sorry for myself and for her. And I’m also drifting away very very gradually, day by day, from her and the ordinariness, quite simple life we had. She’s a woman I used to know. And feeling like this makes me feel somewhat awkward and a bit of a deserter.
I’m currently in a car park and miserable. Perhaps a silly film later will cheer me up😄 Peter
@Dutchman People I know all say to me, it's the carer or spouse of the PWD who suffers the most. The PWD is not aware they are ill at all.
 

Dutchman

Registered User
May 26, 2017
971
0
73
Devon
When will this misery ever stop? I don’t know why but lm in floods of tears right now thinking of the times before Bridget went into the home. I didn’t really appreciate at all the anxiety she was going through. She made me drive to the hospital 4 times looking for her husband and I was so cross and shouted at her. The night before she left here to go to the home i barricaded my bedroom door to stop her coming in at 2 in the morning to plead with me to take her to her parents.

I heard her get up and slowly walk along the landing and then she gently tried my bedroom door handle. I watched it turn and did nothing. I just hoped she’d go back to her bed which she did. I abandoned her when I should have taken her in my arms and tried to comfort her. What sort of man am I? I think of these moments now and I’m ashamed at my behaviour

She so wanted release from all the anxiety and panic dementia brings and I couldn’t do it.

I kept going with her for nearly 4 years of some sort of dementia behaviour. I lived with it and tried my best to fit in around day to day dementia problems. At first it wasn’t too bad, we had some form of good life, we went out, did things, but more and more the dementia impacted in our lives.

Now she stoically gets on with her life in the home. You know what, she’s never cried once throughout all of this, never cried over her dementia condition, never cried when she couldn’t escape the house and never cried because she’s now in the care home.

Again thanks for listening. Peter
 

Old Flopsy

Registered User
Sep 12, 2019
42
0
Peter you did your best for four long years- it is just not possible to stay patient for 24 hours a day, every day, as I am finding out.

You need to sleep even if the PWD is intent on staying awake and wanting to go on a journey to find the parents who have long gone. Your action in denying her this discussion in the middle of the night was the kindest solution.. Please don't feel so guilty.

You did your best- and your best WAS good enough.
 

Dutchman

Registered User
May 26, 2017
971
0
73
Devon
I bet you are all sick and tired of me coming in here day after day unloading one emotion after another. But it’s all I’ve got when I’m only speaking to a counsellor once a week for an hour when she’s really needed whenever I feel like I do now.

I went out today to do some shopping and found when I returned I had stupidly left the front door open. My first thought was that someone had got in. Then my brain went straight into fantasy mode and I believed that Bridget was back, that all was ok and she was sitting on the settee and she’d say hello. It’s so cruel the way the mind plays such tricks.

Then I phoned the home just to be a little nearer to her. She’s ok they said, just having a cup of tea. It’s so miserable being like this , missing her so, forgetting so easily what it was like when the dementia behaviour was so bad.

She stopped recognising me as Peter her husband back in early 2019. Told me to stop touching “his clothes “, went looking in sheds, rooms and streets for “him”. To be rejected as her husband and as her love was terrible.
Now I see her 3/4 times a week but what if I stopped going? I doubt she would remember and I doubt if she would ask after me. But I still go because I can’t do otherwise even though it breaks my heart each time I see her.

Peter
 

nellbelles

Volunteer Host
Nov 6, 2008
9,023
0
leicester
@Dutchman it’s the price we pay for loving someone.. my husband was blind when I married him I was a carer for a long time before dementia reared it’s ugly head but it didn’t make it any better...
we make vows and if we love someone we keep these vows because we have no choice..
stay strong
 

Dutchman

Registered User
May 26, 2017
971
0
73
Devon
It’s not my usual day for visiting Bridget but I was passing the road so I decided to go round to see her.

Fate had it that today and what happened made me extremely upset and so it goes on. I go to the door and one of the male staff sees me and goes off to find her and then brings her to the door. He puts his arm around her shoulders in a caring supportive, almost chummy manner, but to me I get all sorts of mixed messages that I should be doing that and I don’t want him to do that, that’s my wife, she belongs to me.

I get home really upset and phone an Admiral nurse who explains that , in these days of visitor restrictions , staff within care homes need to comfort residents and if it’s not inappropriate touching not to worry. Also that’s her home now with the staff her family and people she’s used to. But the nurse understood as she said you miss your wife, you miss her touch, if all about grief.

But I’m left with the memory of his arm round her shoulders. I’m jealous and I hope he spreads his care to other residents not to just my Bridget. Is it possible that’s just the way he is and I’m reading far too much into it? And how could I ever square this with the home without causing upset over probably an innocent gesture

My minds a mess sometimes and an instance like this makes my imagination and emotions go into overdrive.

peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,675
0
Kent
My husband used to give his carers the same smile he gave me and I was grateful.

The carers provide the most personal care and it is in the best interests of the residents they have a close relationship, especially with people with dementia who, in many cases are difficult to reach in the first place.
 

Pusskins

Registered User
Jun 6, 2020
177
0
New Zealand
It’s not my usual day for visiting Bridget but I was passing the road so I decided to go round to see her.

Fate had it that today and what happened made me extremely upset and so it goes on. I go to the door and one of the male staff sees me and goes off to find her and then brings her to the door. He puts his arm around her shoulders in a caring supportive, almost chummy manner, but to me I get all sorts of mixed messages that I should be doing that and I don’t want him to do that, that’s my wife, she belongs to me.

I get home really upset and phone an Admiral nurse who explains that , in these days of visitor restrictions , staff within care homes need to comfort residents and if it’s not inappropriate touching not to worry. Also that’s her home now with the staff her family and people she’s used to. But the nurse understood as she said you miss your wife, you miss her touch, if all about grief.

But I’m left with the memory of his arm round her shoulders. I’m jealous and I hope he spreads his care to other residents not to just my Bridget. Is it possible that’s just the way he is and I’m reading far too much into it? And how could I ever square this with the home without causing upset over probably an innocent gesture

My minds a mess sometimes and an instance like this makes my imagination and emotions go into overdrive.

peter
@Dutchman It's probably normal to have these feelings, but on the other hand I would say it was simply an innocent gesture on the part of the nurse. I visited my husband today and felt a little anxious that he might be forming an attachment with a female dementia patient. Like you, my feelings have been ruffled, but I have to look at it from a rational perspective. MH has dementia, probably doesn't know what he's doing half the time, and he's separated from me so probably feels lonely in his own way and misses close female contact. At least he still recognises me and still tells me he loves me, but I'm powerless over anything that goes on in the rest home. I can't let it eat away at me though. Things are hard enough to deal with on an emotional level as it is without imagining things that may or may not be happening.
 

Dutchman

Registered User
May 26, 2017
971
0
73
Devon
Of course you’re all right and it’s silly of me to “ read too much “ into the situation. Problem is of course the separation, loss and isolation all heighten the emotions.
Bless you all, Peter
 

Dutchman

Registered User
May 26, 2017
971
0
73
Devon
I thought what might be a good idea is to transfer all the pictures of Bridget over the years from my PC stuck in a bedroom onto my iPad. So I’ve been going through, painfully, each year separating her picture into a separate file.
You can imagine the distress this is causing but somehow I can’t stop. I somehow owe it to her to be resilient and a little brave because I’m the keeper of the memories now and responsible even though she’ll never remember any. Each picture reminds me of my Bridget when she was bright , alert, full of life and energy enjoying our life and the children. She so loved the children.
So when it’s done I’ll have all the photos to hand on my iPad.

The photos in the albums on the shelves I can’t go near. That’s too painful.
Peter
 

Dutchman

Registered User
May 26, 2017
971
0
73
Devon
I’m off to the home this afternoon so I’ll probably be a miserable mess as usual when I walk back to the car.
My fellow posters, I’ll tell you this. Sometimes when I’m at my lowest I just wish it was all over. I’m dreading that phone call to say she’s very ill or has died. Got to happen sometime unless I die first from an unexpected accident or something ( I’m generally fit) . I’m just treading water really. Bridget doesn’t know me and if I didn’t go anymore I suspect she wouldn’t remember. It’s a one way relationship. I think like this everyday and then I lurch from one emotion to another. Covid has made matters worse of course because of the isolation we all face.

Peter
 

Dutchman

Registered User
May 26, 2017
971
0
73
Devon
It’s only a moment ago but i can’t seem to see much point in doing anything. I view the world as pointless really when i can’t share it with my Bridget. i suppose seeing all the photos of her healthy and vibrant hasn’t helped. There’s a big hole in my life that i’ll never fill and being this miserable day after day is very wearing.

And no matter what anyone says all this grief and misery has to be done on my own. There’s also an undercurrent i feel from family, staff at the home, those that know Bridget of a knowing silence that says “ we can’t or won’t say anything because she is dying and it’s terrible and we don’t want to say the obvious “. So i drift each day, coming onto the Forum ,writing my thoughts and emptying my emotions to make some sense of it all. I mean, i’ve never in my life been so unhappy and cried so much. I’ve never needed to as Bridget and me had a happy life with no need to feel sad about much.

Im encouraged to do stuff, to divert my feelings to somewhere else. But i’m directionless really just ticking off the hours till sleep. I know there are many, many of us going through these terrible times and if it wasn’t for this Forum, well, i don’t know what i would have done

A bad day all round. My daughter last night said Dad you need to give yourself a break from this. Easier said than done.
Peter
 

kindred

Registered User
Apr 8, 2018
2,574
0
It’s only a moment ago but i can’t seem to see much point in doing anything. I view the world as pointless really when i can’t share it with my Bridget. i suppose seeing all the photos of her healthy and vibrant hasn’t helped. There’s a big hole in my life that i’ll never fill and being this miserable day after day is very wearing.

And no matter what anyone says all this grief and misery has to be done on my own. There’s also an undercurrent i feel from family, staff at the home, those that know Bridget of a knowing silence that says “ we can’t or won’t say anything because she is dying and it’s terrible and we don’t want to say the obvious “. So i drift each day, coming onto the Forum ,writing my thoughts and emptying my emotions to make some sense of it all. I mean, i’ve never in my life been so unhappy and cried so much. I’ve never needed to as Bridget and me had a happy life with no need to feel sad about much.

Im encouraged to do stuff, to divert my feelings to somewhere else. But i’m directionless really just ticking off the hours till sleep. I know there are many, many of us going through these terrible times and if it wasn’t for this Forum, well, i don’t know what i would have done

A bad day all round. My daughter last night said Dad you need to give yourself a break from this. Easier said than done.
Peter
Peter, I understand, life for me is largely getting through the hours. This is a terrible time for you, so many emotions. It is so hard to find a point to things. all we can do is keep on keeping on. I am so glad you come on the forum, it helps us too.
With love Geraldine
 

Dutchman

Registered User
May 26, 2017
971
0
73
Devon
Hi Geraldine. Good to hear from you. I know most of you so well now that there’s no subject off the table. Went for a long walk so that’s an accomplishment. Saw Bridget today but she stares at me looking at her through window and I know she’s trying to figure out , not only who I am , but what she’s supposed to do next. So I leave. She is clean, dressed nicely, her hair is clean and she eats well. I should be happy that that’s as good as it can get. Living with me in these Covid times with me not coping on my own, well, we’d probably both be dead by now.
Love from Peter
 

Dutchman

Registered User
May 26, 2017
971
0
73
Devon
Geraldine, did I ever tell you my first wife is called Geraldine. We got divorced and I met Bridget and she rescued me, loved me and gave me my life back.
 

Dutchman

Registered User
May 26, 2017
971
0
73
Devon
i don’t about any of you but at the moment i’m feeling a distinct melancholy and lethargy in just being me. i woke up this morning almost ok, went for a walk and i’ve had a decent meal. So far so good. But i’ve a feeling that i’m wasting away with a life of very little purpose. If you factor in Covid as well and this forced isolation then its increasing everyone’s weariness. I’m encouraged to join a regular Zoom meeting tonight with our local church group but i just haven’t got the enthusiasm for it.

i’ve phoned the home and i’m told that Bridget is fine ( they mostly say that) and thank goodness she’s warm, fed and as content as she could be. So why am i not content also? Perhaps she’s fortunate in some respects that she knows nothing of any of this awfulness we’re going through. If we were together now normally at least we’d be geeing each other up, complaining together, bored together, normal together stuff.

So another day goes past with me moaning on the Forum. Sorry guys. I just say how i feel at the time as i find it helps to unload .

Peter
 

Bikerbeth

Registered User
Feb 11, 2019
1,801
0
Bedford
No need to say sorry at all.
I am this forum for my Mum but for other reasons I can relate to so many of your posts. I am sorry I have no words of wisdom as I muddle through my days too.