• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Dementia’s journey

update2020

Registered User
Jan 2, 2020
40
0
@Pusskins and @blackmortimer, both posts so positive, so good to read.

We had been married 40 years, 40 good years followed by 11 years living with Alzheimer’s. My husband died just over 5 years ago and the decision was to add memories to the good years or continue the misery of the last 11. So five years down the line and I have added to the 40 years and those other 11 years are pushed well back. They will never be forgotten but they don’t take centre stage.
It's interesting that you raise this topic, @Pusskins , because it's a position I used to take quite a lot - thinking as the spanner in the human works, so to speak - and I still agree that thinking about the future is not only pointless, because it's unknown and in many ways unknowable, so I have stopped doing it particularly where Margaret is concerned. She's well looked after (better than I ever did) and seems content. So I've stopped looking beyond that. On the other hand, I have come to realise that thinking about the past, of the many happy moments I've enjoyed, Margaret's witty and animated conversation, her favourite quotations, as the song goes "they can't take that away from me". That's how I've learned to rise above the misery that dementia brings us all and it helps. I no longer waste time imagining a future that can't be known. After all, I might die tomorrow and then it's our children who will have to attend to Margaret's needs. So today I'll remember the happy times. I refuse to torment myself by believing they will ever return, but as long as they're in my memory it's the next best thing.
Nomadland - just seen it - I was one of three people in the cinema. Fantastic film on love and loss and living on. The great universals. Many of the ‘cast’ actually playing themselves. We are not alone.
 

Dutchman

Registered User
May 26, 2017
1,287
0
73
Devon, Totnes
Just come back from the home. Bridget seems to have lost the idea of eating and I’m having hard time just sitting in front her willing her to take another mouthful. When her mouth is full she doesn’t want to chew or swallow. It’s so upsetting to see her like this and no matter what the staff say to give me hope I have doubts all the time.

It’s such a different change from her walking around and feeding herself before her fall to her being like this - vacant, disinterested and very tired.

I have unanswered questions that no one seems to want to answer. No one witnessed the fall so why did she fall? Should there have been a member of staff present at all times in the lounge? Would it have made a difference? Why has she changed so dramatically?

My dilemma is that to investigate the home is to put me at odds with the hard but praiseworthy job they’re doing anyway. Are falls something that I have to accept? Many of the residents never walk and therefore never fall.
So that leaves me with problems of her eating. No eating no life. Do I have to accept that she’ll now just drift away?

God, this is the hardest thing I’ve ever had to do in my life. I visit and it’s hard. I don’t visit and it’s upsetting not seeing and helping her.

peter
 

jennifer1967

Registered User
Mar 15, 2020
5,278
0
Southampton
Just come back from the home. Bridget seems to have lost the idea of eating and I’m having hard time just sitting in front her willing her to take another mouthful. When her mouth is full she doesn’t want to chew or swallow. It’s so upsetting to see her like this and no matter what the staff say to give me hope I have doubts all the time.

It’s such a different change from her walking around and feeding herself before her fall to her being like this - vacant, disinterested and very tired.

I have unanswered questions that no one seems to want to answer. No one witnessed the fall so why did she fall? Should there have been a member of staff present at all times in the lounge? Would it have made a difference? Why has she changed so dramatically?

My dilemma is that to investigate the home is to put me at odds with the hard but praiseworthy job they’re doing anyway. Are falls something that I have to accept? Many of the residents never walk and therefore never fall.
So that leaves me with problems of her eating. No eating no life. Do I have to accept that she’ll now just drift away?

God, this is the hardest thing I’ve ever had to do in my life. I visit and it’s hard. I don’t visit and it’s upsetting not seeing and helping her.

peter
even if there was someone present in the lounge, they are not suppose to catch her and break her fall because they could do more harm than good by doing that.
 

canary

Registered User
Feb 25, 2014
15,346
0
South coast
I think that you are not getting answers, Peter, simply because there are none.

People with dementia are just more prone to falling - their mobility starts to decline and their spatial awareness becomes garbled as well as problems like possible TIAs. Its impossible to prevent falls - OH falls regularly and I can be stood right next to him and cant stop the fall.

Falls often progress dementia. Mum fell (no one saw her fall either) and she was found to have fractured her wrist. After that I saw a definite decline - Im sure the shock of the fall combined with the pain of the fracture progressed her dementia and after that she needed a wheelchair when she went out.

Its impossible to predict what will happen with dementia, Peter. Im sure you know that. When they get to the later stages there is always a feeling of - what if? and - how long? but there really is no way of knowing.

((((((((((((((((((((((((((hugs))))))))))))))))))))
 

notsogooddtr

Registered User
Jul 2, 2011
999
0
Just come back from the home. Bridget seems to have lost the idea of eating and I’m having hard time just sitting in front her willing her to take another mouthful. When her mouth is full she doesn’t want to chew or swallow. It’s so upsetting to see her like this and no matter what the staff say to give me hope I have doubts all the time.

It’s such a different change from her walking around and feeding herself before her fall to her being like this - vacant, disinterested and very tired.

I have unanswered questions that no one seems to want to answer. No one witnessed the fall so why did she fall? Should there have been a member of staff present at all times in the lounge? Would it have made a difference? Why has she changed so dramatically?

My dilemma is that to investigate the home is to put me at odds with the hard but praiseworthy job they’re doing anyway. Are falls something that I have to accept? Many of the residents never walk and therefore never fall.
So that leaves me with problems of her eating. No eating no life. Do I have to accept that she’ll now just drift away?

God, this is the hardest thing I’ve ever had to do in my life. I visit and it’s hard. I don’t visit and it’s upsetting not seeing and helping her.

peter
Dementia is progressive Peter, no one improves or recovers. People fall, they stop eating, they deteriorate. The things that are happening to Bridget have happened to countless others, my parents included. There are no answers.
 

imthedaughter

Registered User
Apr 3, 2019
636
0
I have unanswered questions that no one seems to want to answer. No one witnessed the fall so why did she fall? Should there have been a member of staff present at all times in the lounge? Would it have made a difference? Why has she changed so dramatically?

My dilemma is that to investigate the home is to put me at odds with the hard but praiseworthy job they’re doing anyway. Are falls something that I have to accept? Many of the residents never walk and therefore never fall.
So that leaves me with problems of her eating. No eating no life. Do I have to accept that she’ll now just drift away?
My dad came down for lunch one day with a black eye. He'd been watching TV since breakfast in his room with a tea break mid-morning, as is his routine. No one heard anything, no bang or anything and nothing appeared to be damaged in his room. When the carers asked him what has happened he first said he'd been in a car crash and then changed his story to him being attacked and mugged - none of which could have happened. The home were very apologetic but they are not negligent. The issue with dad is that every time he has a fall it usually means he's going to decline as much as his mobility is not amazing I believe his bad falls, when he falls on his face, for example, are caused by vascular activity in the brain. So they signify a dementia issue, and it's not surprising that a fall is followed by a decline. And as we know, they will never get better, and eventually they will no longer need food. Of course this can be a temporary situation, but the general trend is inevitably, down. And that's why they used to call dementia the long goodbye. I'm sorry we're all in this position, but we are in it together. I hope that we'll have answers one day, but we don't right now. Take care.
 

Dutchman

Registered User
May 26, 2017
1,287
0
73
Devon, Totnes
Thanks for the reply @imthedaughter and @notsogooddtr.

Of course I realise that every fall has the potential to make matters worse. It has changed her from someone who got around the home , together we’d have a little walk outside, she was responsive, to my love being more vacant, difficulty eating, altogether a sea change in behaviour.

I’m encouraged to accept this decline and encouraged to accept that this is how things are, but I can’t accept it and I hang on to every scrap of hope I can. I know that this is detrimental to my recovery from grief but I love her so much that I’d take her place in a heartbeat and, as hopeless as it is, I cannot let go of holding on to what’s left of my darling wife.

There, that’s the situation I’m in. And irrational as it probably is, I cannot help longing for her and to care for her, even though I appreciate there’s little more I can do than I’m already doing.

peter
 
Last edited:

Andy54

Registered User
Sep 24, 2020
56
0
The longing may seem irrational but I think the hope is an entirely natural response. Every time I visit Deb I have the vain hope that I might perhaps get a momentary glimpse of some part of her old self, I know it's not going to happen but I think that love keeps that hope going even in the face of the inevitable decline.
Best wishes Andy.
 

Dutchman

Registered User
May 26, 2017
1,287
0
73
Devon, Totnes
The longing may seem irrational but I think the hope is an entirely natural response. Every time I visit Deb I have the vain hope that I might perhaps get a momentary glimpse of some part of her old self, I know it's not going to happen but I think that love keeps that hope going even in the face of the inevitable decline.
Best wishes Andy.
Thanks @Andy54 .

It’s so damn hard isn’t it. I want to care for her in the only remaining way possible and that’s visiting to the limit of what time I can emotionally endure.

Just because she doesn’t know me or cannot understand my love for her, it is of little consequence. I need to visit to show I care for her otherwise I will regret the fact that in some way I let her down.
 

Dutchman

Registered User
May 26, 2017
1,287
0
73
Devon, Totnes
@Andy54 @blackmortimer - plus others .

We, together with other men, come on here willing to open up and share our feelings. Wouldn’t it be good to meet up one day. Mens groups specifically for cares in our situation are quite rare and I’m finding it impossible to find anything in my general area.
Any thoughts on a possibly meet up after Covid? I’m in Devon.
 

Dutchman

Registered User
May 26, 2017
1,287
0
73
Devon, Totnes
It’s Sunday morning and I never know what to do for the best. I visited on Friday and I’ll go again tomorrow.

It’s just that if I don’t go today I feel I’m letting her down. I know she won’t know if I’ve been or not but that’s not the point. I still feel like I’ve abandoned her in some way. I miss her so much but when I get there and sit in front of her she doesn’t know me and it’s very hard getting her to eat and it’s upsetting seeing her like this.
I’ve phoned the home just now and they said she’s ok, that she’s improving and for that I’m comforted. So I won’t go but I feel like a coward avoiding her and letting her down.

What I’d really like is for her to say” it’s ok, I’ll be alright, you take the day off and I’ll see you tomorrow. Peter I love you as you love me”. Stupid I know but she’s my life and I can’t move on.

peter
 

canary

Registered User
Feb 25, 2014
15,346
0
South coast
I know she cant say that now, Peter, but would she have said that when she was well?
If so (and Im sure she would) take that as having the day off with her blessing
 

Dutchman

Registered User
May 26, 2017
1,287
0
73
Devon, Totnes
Well, it’s Sunday afternoon and I’ve managed to accept that perhaps it didn’t matter too much that I didn’t visit. I still have the nagging doubts of “should I “ or “shouldn’t I “.

I’ve tried distractions all day but they soon ran out. And even when I managed to not think about Bridget, when I finally did I’m saddened by the fact that I’ve spent time with her not on my mind, a guilt that will now take over the evening.

Why do I feel that I’ve abandoned her? I never feel I’m doing enough, although I visit as much as my emotions and stress level allows. She could not be better cared for in the home. They have all the expertise to look after her.

But I cared for her 3 long dementia years and, although it was tough at times, I look back and know that I looked after a woman who was my whole life, with all the good and not so good times. To give that to others is at once devastating and for me like turning my back on someone saying “no, please no”.

l know all this is normal thinking in grief (perhaps not?) but all these thoughts consume me. I really envy those that can be more logical about it and be a bit more settled in their thinking.
Peter
 
Last edited:

Andy54

Registered User
Sep 24, 2020
56
0
Yes it's hard to ignore the guilt and sadness. I can usually push it into the background while I get on with my day but at some point every day it resurfaces. Logically someone has only been abandoned if they themselves feel the sense of abandonment and I don't think that that is true in our circumstances.
 

Dutchman

Registered User
May 26, 2017
1,287
0
73
Devon, Totnes
Hi Andy. Yes you’re right. But, I feel I’ve abandoned her and that’s the feeling I need to get straight.

I look a film, read if I can, bit of gardening, music. I stroke my cat , which is supposed to be calming, but as soon as I’m quiet and I glance at pictures of Bridget and me in better times the memories flood back. And now they’re my memories alone. Much better shared but dementia destroys even that joy.
 

Dutchman

Registered User
May 26, 2017
1,287
0
73
Devon, Totnes
Every day now I start the day with apprehension and fear. I’m visiting today and I think what am I going to see when I enter her room, will I be able to feed her, am i looking at my love who’s suffering and hasn’t got long to live? And then I wonder how I’m going to live with the grief of losing her forever and never sharing my life with the only women I’ve ever loved.

Believe me, I know I go on and on about this and it’s becoming repetitive but there’s no way I can change how I am. Being like this really doesn’t help, I know that, but I can’t change. I just wish sometimes I could just have a respite from it all, just an afternoon would do.
 

Dutchman

Registered User
May 26, 2017
1,287
0
73
Devon, Totnes
Tuesday morning. I’m not seeing Bridget today.

Yesterday I went and immediately I entered her room I saw that she was both awake and more animated than earlier last week. Just that lifted my heart and after getting settled she eagerly eat some fruit I’d brought with me. Same with her dinner that the staff brought up to us.

I’m told that she appears better and is becoming more able to move herself from sitting to standing. The doctor is coming on Thursday to double check on her to see if there is any other causes for concern.

I feel a bit hypocritical in some ways in that I enjoy the respite from all the gloom of the worrying and anxiety very quickly. The smallest amount of hope, as I’ve shown above, buoys me up and I’m feeling a bit peaceful again. The difference between feeling awful and feeling at ease is so small it like a switch being turned off and on: you’re feeling wretched and, hey presto, some hope comes along and the the switch is moved and for a glorious moment you feel better.
Peter