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And so it goes on...

Moggymad

Registered User
May 12, 2017
500
[QUOTE="......I can’t believe that he is not still here and has passed over from life to death. Where is he now? I told him that I am with him in spirit if not in body and the reverse is true......[/QUOTE]

Sending my sincere condolences @Grahamstown.
" If there ever comes a day when we can't be together, keep me in your heart and I'll stay there forever"
 

Banjomansmate

Registered User
Jan 13, 2019
1,868
Dorset
It has been a long journey for both of you and you now have to carry on alone but with the knowledge that your husband is no longer suffering and that you were able to care for him to the end. Hold on that ‘positive’ thought through the coming days, weeks and months, I think you will find that it helps, it certainly helped me after my husband died.

Thinking of you,
Carol.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,366
Kent
How wonderful you were able to keep your husband at home with you right until the end @Grahamstown. It`s what so many of us aspired to but were unable.

Please accept my sincere condolences.
 

Tea and. toast

Registered User
May 8, 2019
58
Thinking of you Grahamstown and your daughter at this sad time. My the memories of your wonderful husband give you some comfort to get you through the coming days. Big hug.
 

Grahamstown

Registered User
Jan 12, 2018
1,686
80
East of England
How wonderful you were able to keep your husband at home with you right until the end @Grahamstown. It`s what so many of us aspired to but were unable.

Please accept my sincere condolences.
Thank you and to be honest his precipitous decline made all the difference. He was a short time away from being transferred to the care home. If we had had to nurse him much longer I don’t think we could have done it because it needed two people. We were into the NHS system and the District Nurses were so good and night sitters were available but we never needed them. I am just like Selfish Pig’s chapter on Afterwards. I no longer have the structure of the day and feel bereft even though I had had enough and he was so ill, a no-win situation with which many of us are familiar. He is no longer upstairs watching his TV and pottering down to see what I am doing. But I miss the man who was not the man he ended up being and a day later I am thinking of him as he was and I was able to look at photographs albeit through tears. You have all been so kind and that’s a great consolation.
 

Grahamstown

Registered User
Jan 12, 2018
1,686
80
East of England
My son and I had a deep conversation about the past few days and he said that he was glad to see that I was practicing self rescue which I found intriguing and I bring it to your attention because that’s exactly what we need to do in order to survive.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,366
Kent
Self rescue! It`s a new one for me but I like it. We are the only ones who can rescue ourselves. No one can do it for us. :)
 

AliceA

Registered User
May 27, 2016
2,825
Self rescue, where did the the term originate I wonder.
So true though, we cannot really look to others, we really do have to grow up.
We are the only friend we have who shares every moment with us from our first to the last.
Perhaps when we put this into practice we can truly love others without expectation of return? Unconditionally? Openly, honestly.
The opposite of self-centredness, just fitting our own skin so we are not trying to borrow others people's.
The toughest lesson of all though.

You son must be proud of you, xxxx
 

Grahamstown

Registered User
Jan 12, 2018
1,686
80
East of England
Self rescue, where did the the term originate I wonder.
So true though, we cannot really look to others, we really do have to grow up.
We are the only friend we have who shares every moment with us from our first to the last.
Perhaps when we put this into practice we can truly love others without expectation of return? Unconditionally? Openly, honestly.
The opposite of self-centredness, just fitting our own skin so we are not trying to borrow others people's.
The toughest lesson of all though.

You son must be proud of you, xxxx
What a thoughtful reply and I have an answer to your question. Apparently when my son was on a white water rafting trip in the USA the team of eight on the inflatable were instructed to self rescue in the event that the boat overturned, that they couldn’t rely on the others to help them in that situation. In the event one boat entered a disastrous eddy and flipped over tossing the occupants into a whirlpool. The crew of the other boat did actually reach out and pull one person into their boat where he flopped onto the floor like a beached fish and he had only been under the water for about 10 seconds. He lay gasping on the floor even though he had not got much water in his lungs. I think you are so right Alice, it’s a wonderful metaphor for how I feel, a gasping fish, but I too have had a helping hand from you, my son, my daughter, the professionals and so many friends but ultimately I am going to have to self rescue when the raging torrent of this is over. I may be out of the whirlpool but it’s not the end of the process xxx
 

Starting on a journey

Registered User
Jul 9, 2019
282
Please allow yourself time to grieve. My husband had a sudden death and once the initial shock was over I was strong and stayed strong for everyone, especially mum who is PWD. Now 20 months later I am cracking under everything and I do feel that I didn’t allow myself long enough to grieve.
 

White Rose

Registered User
Nov 4, 2018
627
'Self rescue' is a good term to remember. Horrible, horrible disease, robs us of our loved ones even before their death and then we go through all the grief again when they do eventually pass away! All the years of caring, adjusting to every decline and then a massive adjustment when they pass on and leave a crater like hole in your life that you suddenly realise has to be filled. It's why I believe we should try to keep some aspects of our own lives while caring because if the caring is all there is then the shock of the death and the hole the PWD leaves is surely so much greater and so much more difficult to fill.
 

jenniferjean

Registered User
Apr 2, 2016
749
Basingstoke, Hampshire
It's why I believe we should try to keep some aspects of our own lives while caring because if the caring is all there is then the shock of the death and the hole the PWD leaves is surely so much greater and so much more difficult to fill.
Wise words @White Rose but sometimes we are unable to do this. Trying to care for a PWD can sometimes be all consuming. If only there was more help out there. If only carers were recognised more by society.
 

Vitesse

Registered User
Oct 26, 2016
198
'Self rescue' is a good term to remember. Horrible, horrible disease, robs us of our loved ones even before their death and then we go through all the grief again when they do eventually pass away! All the years of caring, adjusting to every decline and then a massive adjustment when they pass on and leave a crater like hole in your life that you suddenly realise has to be filled. It's why I believe we should try to keep some aspects of our own lives while caring because if the caring is all there is then the shock of the death and the hole the PWD leaves is surely so much greater and so much more difficult to fill.
I Know that you are right about keeping aspects of your own lives, but somehow I never quite managed it!! Since retirement we have tended to do most things together and i never imagined that a Dementia would befall us, and I also had no idea that I wouldn’t be able to handle it!! i have always been a capable controlling sort of person, and here I am, in pieces!!! I hope each day may see an end to his suffering, but I also know I will be bereft when it happens.
 

White Rose

Registered User
Nov 4, 2018
627
Wise words @White Rose but sometimes we are unable to do this. Trying to care for a PWD can sometimes be all consuming. If only there was more help out there. If only carers were recognised more by society.
Unfortunately unless you have the money to pay for help it is an impossible situation. There seem to be charities and organisations who can provide certain types of help but it's such postcode lottery. I found it useful requesting a Carer's Assessment and, although I didn't have the actual assessment in the end, the people I spoke to were very helpful in providing lots of information about organisations and activities in my area. I don't want to impose on Grahamstown's post any further but I'm working on an idea which I'll share with you if anything comes of it.
 

White Rose

Registered User
Nov 4, 2018
627
I Know that you are right about keeping aspects of your own lives, but somehow I never quite managed it!! Since retirement we have tended to do most things together and i never imagined that a Dementia would befall us, and I also had no idea that I wouldn’t be able to handle it!! i have always been a capable controlling sort of person, and here I am, in pieces!!! I hope each day may see an end to his suffering, but I also know I will be bereft when it happens.
Double edged sword isn't it @Vitesse. As to not being able to handle it, well you are handling it, we are capable of so much more than we think we are! But fun it's not!!
 

AliceA

Registered User
May 27, 2016
2,825
Whether we can retain our part of 'previous' life seems to depend on many factors.
Caring for a spouse when life has between so entwined is different from caring for parents even when no easier.
Especially if the last years have been retirement years.
When first retired I did some serious study involving essays and projects but that did not last, we enjoyed each other's company too much.
We shared interests and the enjoyment was in the sharing or telling someone how we found something.
Working years were different of course.
Physically I am stuck, no sitters or transport.
However I do agree we need to to avoid getting bogged down with the chores involved in caring.
I have found Ted Talks help to expand my mind, YouTube have many interesting topics. I am in group forums for my external interests.
I am exploring the effect of sound vibration on the body and some good results have been found with dementia if not absolute cure. I am trying these on my guinea pig(let). And myself for sleep, relaxation 40 hertz is a healing sound.
But ongoing pre grief and eventual grief of absolute physical loss, often mean the lack of motivation and desire. Sometimes we just need to wallow a bit, eventually finding new things that need one not two. It is no good harping back
One cannot step into the same river twice. Caring changes us. Changes our values and desires. Sometimes for the better.
 

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