Dementia’s journey

[Dutchman]

@canary . It makes me so angry when I hear about people like your brother.
He couldn’t cope ? He was frightened?
How does he think you were feeling.

One day he might have to deal with something awful happening to someone even closer or even to himself.
It just makes me want to say to him “Grow up and grow a pair.??

Hi @CAL Y . it all makes the blood boil doesn’t it!
Sad to say that unless people go through this and experience what we experience then they’ve no idea. I would hate for any of my family to experience this. But, what saddens me is the shallowness of the family dynamic in the way they become so insular and closed up. The way children can dictate the timetable and parents give in to keep the peace.

So what if they come here and remain in the bedroom all weekend while dad visits nanny! So much is given up for the sake of children's feelings. So, as I said earlier, I’d rather they come because they want than they have to. But that’s a big expectation and it’s not worth my energy to spend time fretting over this.

 

[Violet Jane]

I'm afraid that very many people don't want to visit people with advanced dementia in care homes and that includes family members and previously close friends. I can't say that I blame them. Dementia in its later stages is horrifying to witness. If the PWD no longer recognises the family member or friend then it's easy to convince oneself that an unpleasant visit is not worthwhile. I visited my mother regularly but dreaded the visits. As her dementia progressed the impending visit hung over me like a dark cloud and I saw very little benefit to either of us; often she would be asleep for much of the time. If you visit very frequently then, as Peter has experienced, you will catch the odd glimpse of the person before dementia but if you visit less regularly it's likely that the visits will prove to be disappointing because the PWD is asleep / sleepy / not interested / in a bad mood. Once the visitor has had a couple of visits like that It's easy to understand why s/he doesn't want to visit again.

In my mother's case, I don't think that a single friend ever visited her in her care home in the four years she was there and distance was not a barrier as it was located in a village just outside the town where my mother had been living. My brother lived seven minutes drive away but, apart from one visit at the end of life, I don't think that he ever visited her without me.

 

[CAL Y]

Hi @CAL Y . it all makes the blood boil doesn’t it!
Sad to say that unless people go through this and experience what we experience then they’ve no idea. I would hate for any of my family to experience this. But, what saddens me is the shallowness of the family dynamic in the way they become so insular and closed up. The way children can dictate the timetable and parents give in to keep the peace.

So what if they come here and remain in the bedroom all weekend while dad visits nanny! So much is given up for the sake of children's feelings. So, as I said earlier, I’d rather they come because they want than they have to. But that’s a big expectation and it’s not worth my energy to spend time fretting over this.

Hi @Dutchman . I agree with you. I had the same with my husbands daughters trying to dictate the timetable, that was after ignoring us for 6 months.

Why should we try to spare their feeling when they don’t seem to care about ours.
We are talking about adults here. They should starting acting their age.
In my case it caused an irretrievable breakdown of my relationship with them which was very sad as we had always been good friends until that point.

I found it easier to cut out people who didn’t care. We have enough on our plates without worrying about them.
As you say. Tell them all to shove it.
Keep strong Peter.
Carole.x

 

[Dutchman]

Three little words that’s all it takes. During my visit yesterday she said”I miss you” and my eyes well up and I have to grip my teeth hard to stop dissolving into a crying mess in front of her. Don’t do this to me I think and she looks so sad and stares at me in a hurt but resigned way. Please don’t miss me, please don’t. I could bear to think of you upset.

I don’t want her to miss me and I want her to think me special. I want it both ways and that’s the rub. I can’t have her home to look after her and I don’t want her away from me. I miss her company but don’t want the bad old days of dementia behaviour. It’s this constant tooing and froing of emotions that’s so draining.
And I want people who know intimately what I mean because most of these I know haven’t been through this or if they have have handled it differently. We here , we are the closest to what I feel.

 

[CAL Y]

Three little words that’s all it takes. During my visit yesterday she said”I miss you” and my eyes well up and I have to grip my teeth hard to stop dissolving into a crying mess in front of her. Don’t do this to me I think and she looks so sad and stares at me in a hurt but resigned way. Please don’t miss me, please don’t. I could bear to think of you upset.

I don’t want her to miss me and I want her to think me special. I want it both ways and that’s the rub. I can’t have her home to look after her and I don’t want her away from me. I miss her company but don’t want the bad old days of dementia behaviour. It’s this constant tooing and froing of emotions that’s so draining.
And I want people who know intimately what I mean because most of these I know haven’t been through this or if they have have handled it differently. We here , we are the closest to what I feel.

Oh Peter. That has just brought tears to my eyes.xx

 

[Dutchman]

Something my counsellor said to me yesterday. She said that she viewed me as brave to be visiting regularly bearing in mind the obvious anxiety and potential unknowns that each visit brings. I don’t see myself as brave just lovingly loyal to Bridget. I’m no one special and I’m surprised that anything I do is thought of as special.

Today, for instance, I bring in goodies as usual, she smiles and is content ( as far as I can tell) and I try to get her to understand that I’ll always be there for her, that I’m going now but I’ll be in tomorrow and I’m not far away. That’s all I can do. Just doing what comes naturally for her.
It’s not like she was having an affair and we parted under a cloud. She remained ( and remains) my wife up to the day she left here and without the dementia we would have carried on caring for each other.

I guess what I’m saying is that whatever we can manage is enough and we need to acknowledge the strength of this.

 

[Dutchman]

I don’t know whether this resonates with anyone but I’d like to share. You know I do this so please be patient.

It’s really quiet in the house and I won’t be visiting today. My mind rests in trying to make sense of it all. Where there was another person, and this was taken for granted, there is an emptiness. Almost two and half years now and I’m used to it being just me and it still remains strange, like - was she really here walking and sitting and chatting and just taking up space? I suppose it’s to be expected this loneliness but when it’s so quiet it’s the complete opposite to 30 years of normal togetherness.

 

[kindred]

I don’t know whether this resonates with anyone but I’d like to share. You know I do this so please be patient.

It’s really quiet in the house and I won’t be visiting today. My mind rests in trying to make sense of it all. Where there was another person, and this was taken for granted, there is an emptiness. Almost two and half years now and I’m used to it being just me and it still remains strange, like - was she really here walking and sitting and chatting and just taking up space? I suppose it’s to be expected this loneliness but when it’s so quiet it’s the complete opposite to 30 years of normal togetherness.

Peter, of course it resonates with me. I don’t think our minds can really make sense of it, it’s too hard for us. All we can do is endure and hope.
With love and thanks for sharing. Thank you. Kindredxx

 

[Dutchman]

Thanks Kindred. Always in tune with what I feel.
I was out last night with family and my daughter insisted I think about
travelling ( New Zealand) before “it’s too late”. Still doesn’t understand how I feel about things and really doesn’t appreciate how my life circles around Bridget and my need be close and remain connected.
They lead a lovely little life with each other, good circle of friends, comfortably off, good health, going on exotic holidays ( walking in Butan for heaven sake!) and never had to confront grief on our scale. So how could they know or even come close to how I feel living without Bridget. And I hope for them grief is a long way off. Enjoy the good life while you can.
Not even the misery in Ukraine has dented their bubbliness

 

[Dutchman]

Again I’m in a dilemma

Often when I visit Bridget makes remarks like “drive “ or “town” and I wonder whether she would benefit from a trip out somewhere. But the down side of that is for me it would be another commitment, a responsibility when I’m quite used now to just going and being with her a meal times overlooking the garden. As the weather gets warmer we will just walk around the garden.

And would she get a great deal from a trip out anyway? Would I feel better? Would it be so different to the last 2 years that this out of the ordinary trip would further upset me? Am I being selfish again? And once done would Bridget want it again and again?

Even the act of putting her in the car, her sitting next to me once more and going out like we used to, it would remind me of better days and I expect it would upset me. So many mixed up emotions .

Anyway, another thing to upset me thinking about it.

 

[canary]

She may not be asking to go out for a drive in town, she may just be thinking about a time when she did. A reminiscence, not a request.

 

[Dutchman]

Had a long chat with an Admiral Nurse yesterday about my feelings regarding me considering taking Bridget out for a drive somewhere. What would it achieve she asked.

She said that you need to realise that Bridget’s world is small but safe. She is very used to everyone and her surroundings. What I’m feeling is a longing to replicate past times and, anyway, the potential for it to upset her and me is high. Also, practically, there are issues with safety and personal care.

I suppose these are reasonable considerations but I always want to do more, enrich her life more but is that out of guilt? I go as much as I can ( a little of me thinks not enough) but sometimes the enthusiasm is lacking and the guilt monster whispers into my ear.
All normal I’m told. Anyone want to agree?
Peter

 

[Grannie G]

My husband had been in residential care for only six months when the care home organised a garden party. He was outdoors for less than ten minutes when he asked to be taken back indoors, saying he didn`t feel safe outside.

Thank goodness it was a time when he was able to express some needs otherwise I wouldn't have understood.

This was a person who really enjoyed outdoor life pre dementia but so much had changed. I realised there was a big difference between seeing the world in his eyes and what I thought he might like.

 

[Andy54]

The idea that the PWDs world is small and safe resonates with me. My last two visit to Deb have ended when it has become obvious she wanted to get up out of her chair (she needs help to get up and can't express herself verbally), she has then taken my hand and led me out of her room along the corridor to the lounge, sat down with another couple of residents and waved goodbye to me. So it seems she is quite content in her little world and I am just an outsider who visits. In some ways I am encouraged that she seems so comfortable in her world but at the same time a little sad that I am apparently no longer a significant part of it.

 

[canary]

I always want to do more, enrich her life more

Now that her life is so small (although she herself will not feel it is small and you will not be able to expand it) I expect that you enrich her life by just simply being there.

 

[Melles Belles]

@Dutchman could you maybe take Bridget into the CH garden when the weather is a bit warmer. She may, or may not enjoy it.

 

[Dutchman]

To all my replies many thanks- you know it means a lot.

Yes, when it’s warmer ( she’s always been one for feeling the cold) I’ll take her out and we can feel the sunshine and breeze on our faces.

 

[Jaded'n'faded]

I'm not surprised you jumped at the words 'drive' and 'town', Peter! I know you would do anything you could for B if you thought it would make her happy, even if just for a few minutes. Your love just shines through.

But I think @canary is probably right and it was just a fleeting thought passing through her mind. She could easily have said 'fly' and 'moon' then you be wondering how you could get her there... but she might have been remembering the song!

It's unlikely she feels a need to 'do' things but it seems to me she does respond when you visit. Being there is worth more than doing anything.

 

[Dutchman]

It’s a funny feeling of what used to happen as commonplace as holding hands. To have her in the passenger seat once more like so many times before when we often went for a drive. I’ve spent the last two and half years with it empty and just me in the car and just like me on the sofa.

To take her away from the home for a little while around the countryside and it’s just 15 minutes away from our home.

No, I’m not going to bring her home ( a little of me remains tempted) but what a dream that would be. To have her back indoors to fill the house up once more. I’m sure it wouldn’t be at all like I’d imagine and it would destroy my remaining sanity. I’m not a strong realist person and want her so much when she’s not that far away. It’s so cruel and crazy.

 

[Dutchman]

I know. I know. It must seem to others that I constantly go over old ground, repeat what my feelings are and can’t quite accept that I’ve just, really, got to get on with it - whatever that means.

I guess this is one way of unloading. I don’t really need a response. I often try to imagine her day from the moment she’s woken up to when she goes to bed. I’m going to speak to the home and get them to walk me through a typical day so I can think about this when I get home. It gets me closer to her. It could be a bit upsetting as well as those tender times of waking up and going to bed were special and I’m not there.
Another day, another visit full of unknowns