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Dementia’s journey

blackmortimer

Registered User
Jan 2, 2021
280
0
I’ve decided to not visit Bridget today. I’ll phone the home soon to tell them.

I just can’t face it today. The upset when I’m there, seeing her like she is, is just too much. Am I selfish and mean? Bridget doesn’t know me and won’t know I not coming today and the home is really looking after her well.

Im only human and I think I need rest from this worry and anxiety. My poor Bridget is always in my thoughts. The only time I nearly escape is in sleep and then dreams get in the way.

My cat had her first adventure into the garden yesterday and loved it. Came back for her food- she’s very easy to be with.

Peterx❤️
Bless you all
I think you're very wise, @Dutchman. You need to stand back, let the home do the heavy lifting and look after yourself. I found myself visiting too often when Margaret was in the mental health unit and all it did was to make me question myself all the time because one day she would seem to recognise me, possibly be friendly, then the next she would refuse to see me or create a scene and leave me in a far worse condition mentally than before. Then when she moved to the nursing home, visiting was far more restricted because of Covid and because of that and the relative distance I visited less and relied more on ringing the home regularly allowing the children to take up visiting slots and forced myself to stand back form the whole situation. Like you I had allowed my life's purpose to be solely looking after Margaret - i had been her sole carer for 5 or more years and frankly my health suffered. So, having stood back I gave myself more time to remember the past, the good times, the thousand and one little things that made the unique character that is Margaret and i think I'm better for it. Of course I don;t know if my way of coping is necessarily yours - we're all different - but I would gently suggest that you perhaps try standing back a little, try sand remember the good things, pay attention to the cat and her needs.
So, a long-winded way of saying no you're not selfish or mean by not going in today. The home knows where you are if they need you. Let them do their job and give yourself chance to breathe and try and heal.

God bless
 

Dutchman

Registered User
May 26, 2017
1,444
0
73
Devon, Totnes
Hi @blackmortimer and @canary.

I suppose I knew I’d feel this way. Because I’m not with her today then I’m feeling guilt and selfishness but I know I had to give it a miss today for my own sake.

More and more now thoughts of her deterioration and losing her crowd into my mind. I’ve really been fooling myself these past years into thinking that this time will never come. I put my head in the sand pretending all would be relatively ok for ever.

When she was here at home with me it was so bad I wanted her gone. Then she left to the home and I wanted her back. Then I’ve got used to her walking around, giving me waves and a walk together. Now I can no longer fool myself and I know her time is limited and I’m not sure if I can handle the stress of it all. That’s why I feel I want to end it all.
My daughter reckons I need diversion away from this continuous grief but I can’t become enthusiastic for anything, not when worrying about Bridget and what’s going to happen to me takes up all my time.

How does anyone get through this time of darkness and stress?. My family, church, friends are all silent - other things to do? Only my fellow Forum friends are here for me constantly. Thank you.

“I struggle and cry, therefore I am”

Peter
 
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Jaded'n'faded

Registered User
Jan 23, 2019
2,018
0
High Peak
There's a dilemma here. You don't want to do what you are doing but you don't want to do anything else either!

I feel for you Peter, but I also feel for your daughter. I think she's right when she says you need diversion (or a break) from this continuous grief. What you're doing each day isn't making you feel better in any way. If anything it's making you feel worse by the day. So why not try something else - could it be any worse? I'm thinking maybe a day at the seaside or some other recreational place with your family. You don't have to 'do' anything but just watching, reminding yourself that life goes on for others might help, even if everything is on hold for you right now.

If you really can't do it I completely understand but I really think you need some positive experiences in your life or you lose your sense of balance and perspective.

Sounds like your new kitty has got her feet firmly under the table :)
 

One Moment At A Time

Registered User
Jan 4, 2019
50
0
Puerto Rico
hi everyone

I’m so wrapped up in the present and have few detail records of what life was like on The forum when I started back in 2017
I need to see all my posts and replies since when I started.. this would be great help to me.
Has anyone a way of doing this?
Greetings, and thank you for your recent posting.

What has work for me; I try my best not to be where there is a “stress factor setting” — it doesn’t really helps my memory, keep my mind occupy having fellowship with family, friends, reading, find words books, tv, watching boxing (you tube), helping my wife doing errands in the house,

Daily having an attitude of thanks giving towards a “Higher Power” of my understanding.

Not missing my appointments with my health providers.

For me it has help ‘since I was a very ... problem drinker’ attending Alcoholic Anonymous and Alzheimer’s Disease support group meetings.

It has help me caring and taking care of a new “member of my family - chispi” (female chiguagua), it’s really therapeutic in my life.

Easy does it / Baby steps / One moment At A Time.

Be careful, safe and take care.

Wishing you a tranquil 24hrs.,
 

update2020

Registered User
Jan 2, 2020
54
0
I'm pacing my visits to once a week at the moment because they have been difficult and distressing recently. The most recent visit was better, but I know that won't necessarily be the new pattern and I think you have to go with your gut instinct. Nobody should pressure you to do other than what you feel comfortable with and we can all only live with so much. It's not a competition, nobody is judging you and you are the best judge of what works best for you. Try to get out and do something else with your extra day - is my only advice - even if it is 'just' going for a walk.
 

Dutchman

Registered User
May 26, 2017
1,444
0
73
Devon, Totnes
I really don’t know how to respond to all the good practical advice given here.

All I feel is completely at sea with all of this with a broken rudder. I just keep going round in circles with emotions. I suspect my family is getting irritated with the gloom I bring into their lives.

The main thing is the change in Bridget’s condition brought about by her fall. It has dramatically altered my ability to cope and I dread going in to see her wondering what I’ll find. I’m scared you see. I’m scared of seeing the deterioration in her body and mind. I’ll go in today at dinner time to help her feed. She used to feed herself so that’s changed. Will she ever walk again? That question hangs over me.
I feel like talking to her doctor to get her take on all of this. Perhaps I’ll arrange that soon.

All your advice on here makes sense, of course, but when I feel as miserable as I do now then then it cancels out any motivation I could have.

Bless you for standing by me. The needy Dutchman of Totnes
 

canary

Registered User
Feb 25, 2014
15,680
0
South coast
Hi Peter. When mum could no longer walk I used to push her in a wheelchair along the prom to look at the sea (she loved it when the sea was rough and the waves crashed), or in the park and watch the ducks being fed. I dont know whether Bridget will have lost mobility or not, but you can still do things even if she has.
 

Pusskins

Registered User
Jun 6, 2020
320
0
New Zealand
I’ve decided to not visit Bridget today. I’ll phone the home soon to tell them.

I just can’t face it today. The upset when I’m there, seeing her like she is, is just too much. Am I selfish and mean? Bridget doesn’t know me and won’t know I not coming today and the home is really looking after her well.

Im only human and I think I need rest from this worry and anxiety. My poor Bridget is always in my thoughts. The only time I nearly escape is in sleep and then dreams get in the way.

My cat had her first adventure into the garden yesterday and loved it. Came back for her food- she’s very easy to be with.

Peterx❤️
Bless you all
@Dutchman I decided ages ago that once MH no longer recognises me, I will visit less often. Your decision is perfectly normal. So glad you're enjoying your cat!
 

Dutchman

Registered User
May 26, 2017
1,444
0
73
Devon, Totnes
To be honest all this is making me a bit of a recluse. I went to visit today, feed her, talk mindless babble at her, say I love you loads of times, smile and sing and I managed to get a couple of smiles from her. Then I come home to lick my wounds.

I have a zoom church group tonight which I “should” join but I’ve no motivation for it. I didn’t join last week either. Knowing it’ll probably be good for me doesn’t do it for me at the moment.

Peter
 
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canary

Registered User
Feb 25, 2014
15,680
0
South coast
Im all zoomed out Peter. To start with it was great and its still better than nothing, but it takes such a lot of concentration, so if Im tired or stressed I cant follow it.
Hopefully in a few weeks we can all start to meet again in person, which will be such a relief and you will probably find easier.
 

Dutchman

Registered User
May 26, 2017
1,444
0
73
Devon, Totnes
Im all zoomed out Peter. To start with it was great and its still better than nothing, but it takes such a lot of concentration, so if Im tired or stressed I cant follow it.
Hopefully in a few weeks we can all start to meet again in person, which will be such a relief and you will probably find easier.
Hi @canary
I agree. Zooming can become a chore. It’s not relaxed but then again it’s all I have until lockdown goes away. I did zoom into my group last night and received their support so I’m glad I did.

So many people with different life changing problems and our experiences of caring are just one of the awful things that loving someone deeply throws us.

I never thought I’d be in love you see. Always thought it was something that happened to others and I didn’t understand the emotion of love. Now I do through my life with Bridget and it’s a mixture of joy to know love and bitterness that it’s brought grief into our lives.

Cynically I feel it doesn’t do you any favours falling in love but neither can we control it. So I’m paying the price now for loving Bridget but at least we had possibly 24/25 years of a normal dementia free life. For that we are blessed.

There no right way. Either you avoid relationships altogether or you find love and hope for the best.
Peter
 

DianeW

Registered User
Sep 10, 2013
850
0
Lytham St Annes
It’s very difficult.....to cope with loss, some harder than others, but I don’t think you can go through life avoiding things that will hurt you If lost.....be it relationships, friendships, pets etc.
 

Dutchman

Registered User
May 26, 2017
1,444
0
73
Devon, Totnes
Went to see Bridget this afternoon and after helping her feed I did some chores - wiping chairs and table’s and hoovering the dining room carpet. It felt good. So why is the feeling wearing off? Why do I still feel I’m not doing enough? I’m not my best friend am I? Always putting myself down and belittling my efforts.

The grief of loss and helplessness always gets in the way.
 

update2020

Registered User
Jan 2, 2020
54
0
Went to see Bridget this afternoon and after helping her feed I did some chores - wiping chairs and table’s and hoovering the dining room carpet. It felt good. So why is the feeling wearing off? Why do I still feel I’m not doing enough? I’m not my best friend am I? Always putting myself down and belittling my efforts.

The grief of loss and helplessness always gets in the way.
Another way of looking at is that none of us are doing enough because it is impossible to do enough. There is no cure and very little treatment for dementia and it will just go on getting worse regardless of what we 'do' about it. So 'doing enough' isn't an option. You do what you can and you certainly care enough.
 

Dutchman

Registered User
May 26, 2017
1,444
0
73
Devon, Totnes
I suppose my feelings are now “how long has she got?”. I wake up and straight away and I dread the future.

I know that what I write here I’ve posted many times before but that’s the nature of the beast, that all the time Bridget’s condition impacts on all I do and think.

How do we prepare ourselves for the inevitable? My stomachs all over the place with stress, I cry at everything and I feel weak and fearful. I do my best to divert my feelings into something else ( as advised by many kind people) but this only lasts a short while.

I spoke yesterday with a couple I know who each have various health issues. It reminds me that others have health concerns as well but the difference is that they have each other to rely on, to help and talk it through
( although she does use doctor Google too much) and just be there for each other.

When you have to do all this on your own it’s so hard and lonely. All I need sometimes when I return from a home visit is for someone to make me a cup of tea, sit me down and chat.

No wonder I resort to Admiral Nurses, our Forum, or when I’m really bad The Samaritans.

I also get the impression that now people are not saying what I think they’re thinking, that Bridget hasn’t got long. This includes friends and care home staff. I’d be the same I know. Its just another piece of the dance around the situation.

I’ve got a free day today so I’d better make the most of it
God bless you all. Peter❤️
 
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Pusskins

Registered User
Jun 6, 2020
320
0
New Zealand
Went to see Bridget this afternoon and after helping her feed I did some chores - wiping chairs and table’s and hoovering the dining room carpet. It felt good. So why is the feeling wearing off? Why do I still feel I’m not doing enough? I’m not my best friend am I? Always putting myself down and belittling my efforts.

The grief of loss and helplessness always gets in the way.
@Dutchman This will sound brutal, but your feelings of loss and helplessness are only getting in the way because you're allowing them to. I had a very dysfunctional childhood and was largely negative and depressed until I hit my 40s when I read the most revealing book ever. It was called: Stop Thinking, Start Living, by Richard Carlson. The message was simple. Our thoughts create our emotions. If you dwell on negative things, you are going to feel depressed. Reading that book turned my life around. Naturally we are all devastated when our loved ones go into care with dementia, but eventually we can take it on board, accept our loss and move forward. I think it's wonderful that you're helping out at Bridget's rest home. You're doing a service and it is only the start. You might end up undertaking more, who knows? You've got to start somewhere in making a new life for yourself.

You know enough of my story to know how crushed I have felt, not only because MH had to go into care with dementia, but also because I discovered his infidelity afterwards and cannot gain closure over it with him. However, as time has moved on, I dwell on it less and less and it doesn't get me down anymore.

If you can, please find that book I mentioned. If you follow the advice, your life will turn around for the better. Nothing is going to change your situation, or that of everybody else in this forum, but rising above it is key. If you keep beating yourself up, and dare I say it, feeling sorry for yourself, you are the only one who will suffer.

Now I feel so bad for writing this, I should perhaps delete it, but what the heck? It just might help. Nothing ventured, nothing gained as they say.

:):):)
 

blackmortimer

Registered User
Jan 2, 2021
280
0
@Dutchman This will sound brutal, but your feelings of loss and helplessness are only getting in the way because you're allowing them to. I had a very dysfunctional childhood and was largely negative and depressed until I hit my 40s when I read the most revealing book ever. It was called: Stop Thinking, Start Living, by Richard Carlson. The message was simple. Our thoughts create our emotions. If you dwell on negative things, you are going to feel depressed. Reading that book turned my life around. Naturally we are all devastated when our loved ones go into care with dementia, but eventually we can take it on board, accept our loss and move forward. I think it's wonderful that you're helping out at Bridget's rest home. You're doing a service and it is only the start. You might end up undertaking more, who knows? You've got to start somewhere in making a new life for yourself.

You know enough of my story to know how crushed I have felt, not only because MH had to go into care with dementia, but also because I discovered his infidelity afterwards and cannot gain closure over it with him. However, as time has moved on, I dwell on it less and less and it doesn't get me down anymore.

If you can, please find that book I mentioned. If you follow the advice, your life will turn around for the better. Nothing is going to change your situation, or that of everybody else in this forum, but rising above it is key. If you keep beating yourself up, and dare I say it, feeling sorry for yourself, you are the only one who will suffer.

Now I feel so bad for writing this, I should perhaps delete it, but what the heck? It just might help. Nothing ventured, nothing gained as they say.

:):):)
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.

God bless
 

jaymor

Volunteer Moderator
Jul 14, 2006
14,292
0
England
@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.