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Dementia’s journey

blackmortimer

Registered User
Jan 2, 2021
294
0
We're here to help, @Dutchman just as you've helped us. I'm beginning, very slowly to come to terms with Margaret's death but the roller coaster effect is still there. Yesterday wasn't too bad, but this morning I found myself, almost by surprise, in floods of tears. I try to busy myself with pointless jobs but it's only a sticking plaster. I miss going to the nursing home each day and the friendships I made there. Without that each day is empty and meaningless. I know I shall have to come to terms with it all and people always say find a new interest or rekindle an old one. But I try to imagine that and recoil. Maybe one day, but not yet. Tomorrow will be difficult. My daughter's coming up and she's seeing the funeral directors to finalise arrangements. I've asked her to deal with it because I simply can't and she has very similar tastes to Margaret so she will organise something that Margaret would, hopefully approve of. All I basically know, or indeed want to know, is that it will be a woodland burial. I try to block it out, but I know it has to be faced. Please continue to pray, if you will, for the repose of Margaret's soul and for me for strength. God bless.
 

Old Flopsy

Registered User
Sep 12, 2019
294
0
@blackmortimer I will pray for you both today, A woodland burial sounds so peaceful, and bluebells will flower in Spring next year.

My OH left his body to medical science- I wasn't happy with that but it wasn't about me so we have tried to carry out his wishes, but no donations are being accepted at the moment at the universities or other concerns we were advised to contact. We tried.

Failing that he requested that we arrange a direct cremation - no service, no mourners, no flowers, but donations to Dementia UK.

He had thought it all through and we have tried to carry out his wishes.

It has been the cremation of OH today - an unattended funeral just as he requested.

I have asked everyone to raise a glass to him today- remembering the lovely selfless person that he was. A friend has been with me today and more friends will call round tonight. Many have sent texts saying they are paying tribute to him and I can feel their support around my shoulders and healing my broken heart.

My tears flow too @blackmortimer but time doesn't stop and one day we will feel better.

His ashes will be brought to me soon and he will be back home where he wanted to be.
 

jennifer1967

Registered User
Mar 15, 2020
7,816
0
Southampton
@blackmortimer I will pray for you both today, A woodland burial sounds so peaceful, and bluebells will flower in Spring next year.

My OH left his body to medical science- I wasn't happy with that but it wasn't about me so we have tried to carry out his wishes, but no donations are being accepted at the moment at the universities or other concerns we were advised to contact. We tried.

Failing that he requested that we arrange a direct cremation - no service, no mourners, no flowers, but donations to Dementia UK.

He had thought it all through and we have tried to carry out his wishes.

It has been the cremation of OH today - an unattended funeral just as he requested.

I have asked everyone to raise a glass to him today- remembering the lovely selfless person that he was. A friend has been with me today and more friends will call round tonight. Many have sent texts saying they are paying tribute to him and I can feel their support around my shoulders and healing my broken heart.

My tears flow too @blackmortimer but time doesn't stop and one day we will feel better.

His ashes will be brought to me soon and he will be back home where he wanted to be.
thats nice @Old Flopsy i have just prepaid for the cremation without the service and his ashes will comer back to me so i can scatter them in devon where he was born. he is no where near that yet but it was such a relief to pay for and be done with now i dont have to worry in the future as its taken care of. his response was i dont want people to sit and cry at my funeral. may your husband rest in peace.
 

jennifer1967

Registered User
Mar 15, 2020
7,816
0
Southampton
We're here to help, @Dutchman just as you've helped us. I'm beginning, very slowly to come to terms with Margaret's death but the roller coaster effect is still there. Yesterday wasn't too bad, but this morning I found myself, almost by surprise, in floods of tears. I try to busy myself with pointless jobs but it's only a sticking plaster. I miss going to the nursing home each day and the friendships I made there. Without that each day is empty and meaningless. I know I shall have to come to terms with it all and people always say find a new interest or rekindle an old one. But I try to imagine that and recoil. Maybe one day, but not yet. Tomorrow will be difficult. My daughter's coming up and she's seeing the funeral directors to finalise arrangements. I've asked her to deal with it because I simply can't and she has very similar tastes to Margaret so she will organise something that Margaret would, hopefully approve of. All I basically know, or indeed want to know, is that it will be a woodland burial. I try to block it out, but I know it has to be faced. Please continue to pray, if you will, for the repose of Margaret's soul and for me for strength. God bless.
may your margaret rest in peace. at one point in the future, maybe you would like to go back and talk to the other families? take it one step at a time
 

Dutchman

Registered User
May 26, 2017
1,622
0
74
Devon, Totnes
We're here to help, @Dutchman just as you've helped us. I'm beginning, very slowly to come to terms with Margaret's death but the roller coaster effect is still there. Yesterday wasn't too bad, but this morning I found myself, almost by surprise, in floods of tears. I try to busy myself with pointless jobs but it's only a sticking plaster. I miss going to the nursing home each day and the friendships I made there. Without that each day is empty and meaningless. I know I shall have to come to terms with it all and people always say find a new interest or rekindle an old one. But I try to imagine that and recoil. Maybe one day, but not yet. Tomorrow will be difficult. My daughter's coming up and she's seeing the funeral directors to finalise arrangements. I've asked her to deal with it because I simply can't and she has very similar tastes to Margaret so she will organise something that Margaret would, hopefully approve of. All I basically know, or indeed want to know, is that it will be a woodland burial. I try to block it out, but I know it has to be faced. Please continue to pray, if you will, for the repose of Margaret's soul and for me for strength. God bless.
You’ve brought up a concern I have. Once Bridget is gone and I don’t have to visit the home anymore then I believe I’ll miss it terribly. The visits form my week and no matter how much it upsets me sometimes to see her at least she’s there for me to care for in a limited way.

And why wouldn’t you be floods of tears? You’ve lost the love of your life. Dementia took my Bridget away some years ago but my love for her is unconditional as I believe yours was for Margaret. There will always be a huge place in our hearts and minds for the person who gave purpose to our lives.

I’ve prepaid for two woodland graves next to each other so that’s one less concern.

My prayers are for Margaret and you that you are both at peace and that you find continued strength to move through this heartbreaking time.
Peter
 

Dutchman

Registered User
May 26, 2017
1,622
0
74
Devon, Totnes
Of all places to talk to a fellow understanding person was at my garage and the manager today. He talked about the comfort of just being together with his wife and young children, they don’t feel they need to have many outside interests as they have each other and for him that is enough. It’s good to know that what Bridget and me had was quite normal. We never really wanted to branch out away from each other.

Trouble is of course that when that person is gone you have to rebuild your life and it’s so hard when the hole left is seemingly bottomless.
Peter
 

Violet Jane

Registered User
Aug 23, 2021
570
0
When your children are young you don’t have much time for anything other than work and family. However, children grow up and most fly the nest and make their own lives, perhaps some distance away or even abroad. It can cause tensions if parents want more companionship from their adult children than the latter are wanting to provide. As far as the parent couple is concerned, I wouldn’t say that it’s ’normal’ for the parties not to want to branch out much outside the couple unit. Some couples are very content spending all their time together and don’t seek stimulation and enjoyment from individual friendships and interests but other equally happy couples have friends both as a couple and individually and find meaning in hobbies and interests that they pursue separately. Neither is better than the other.
 

blackmortimer

Registered User
Jan 2, 2021
294
0
Good morning everyone. I woke up to a truly autumnal morning, dry but foggy, with the trees and hedges gently dripping and then the sun very slowly making its appearance and boding well for a pleasant sunny day. Really a very Margaret sort of morning. My children came up yesterday and sorted the funeral. I had told them to arrange things as they felt best because frankly I have not been capable of contemplating it. But of course they had to tell me the bare bones at least of what they'd arranged. Cue floods of tears. I was a bit taken aback to learn that there's apparently a backlog and that the earliest date was 1st November. Then I remembered that that is All Saints day, a big festival in my youthful high church days - processions with candles and so on - so I felt how serendipitous, and thinking about it afterwards I feel that a period of mourning before the funeral is what I need so that I can prepare myself and then, hopefully, be more able to get back to "normal" life, whatever that is, afterwards. And it's then not long until Christmas which we've agreed to make a celebration of Margaret, as Christmas was her big thing. It will also give me something to look forward to.

I was interested to read what you say about your garage man, @Dutchman and your apt response @Violet Jane. In the years before we retired to rural Suffolk we had a fairly wide circle of friends and all the usual social activities but (and maybe with hindsight it was the beginning of dementia) after we moved here she became more withdrawn and reclusive and didn't to do much except with me and/or the children. So I don't know how I shall go on. One day at a time, I think. My first task is to remove as many reminders of the dementia years as I can and that starts now! Thank you for listening. God bless
 

Violet Jane

Registered User
Aug 23, 2021
570
0
That is quite a long time to have to wait for Margaret’s funeral, Blackmortimer, but, on the upside, it does give you and the family more time to contact people and arrange things as you want them. If I may make a suggestion, it is to create a visual tribute (a sort of slideshow to music) to be shown at the funeral or afterwards at the wake. You can get a company to do this for you if you are not very techie. I did this for my mother and it was very moving to see photographs of her looking so vibrant and capable before she became ill. She had had dementia for so long that I had almost forgotten what she used to be like. I used John Rutter’s setting of ‘For the Beauty of the Earth’ and that was the perfect length for a slideshow of about 60 photographs, with some shown on the same slide.
 

Dutchman

Registered User
May 26, 2017
1,622
0
74
Devon, Totnes
Why don’t they understand? Am I expecting too much? Am I too unrealistic?

I’m at friends? and tried to explain that my life isn’t like theirs in that I can’t anticipate emotions in the topsie turvey world of dementia and my navigation through grief. So she gets upset and strops off in a huff saying that they are dealing with their own feelings of indecision about whether to visit me or not. Don’t dare disagree, that’s wrong too.

Trouble is that I’ve become more independent ( had to ) and I’m less willing to agree for an easy life. I don’t have time for strops so I’m biting my lip until I go home.
 

update2020

Registered User
Jan 2, 2020
85
0
Haven't been around for a while. So very, very sorry to learn of your bereavements @Old Flopsy and @blackmortimer. I do hope that you are both able to find some peace and love.

@Dutchman my OH and I didn't make many/any friends. His developing dementia through his 50s ruled out socialising. He's been in care for 2 years now after around 12 under my care. In the last year I have begun to make new friends, quite deliberately, and I only stick with the ones who can manage our situation. That mostly means not giving me advice about how I should feel (let alone 'move on'). I've also learnt to say that everything is 'fine' when anyone asks. The truth is too incomprehensible for most people to take in. If people have not experienced this, of course they do not understand. How could they? Best to spare them?
 

kindred

Registered User
Apr 8, 2018
2,795
0
Haven't been around for a while. So very, very sorry to learn of your bereavements @Old Flopsy and @blackmortimer. I do hope that you are both able to find some peace and love.

@Dutchman my OH and I didn't make many/any friends. His developing dementia through his 50s ruled out socialising. He's been in care for 2 years now after around 12 under my care. In the last year I have begun to make new friends, quite deliberately, and I only stick with the ones who can manage our situation. That mostly means not giving me advice about how I should feel (let alone 'move on'). I've also learnt to say that everything is 'fine' when anyone asks. The truth is too incomprehensible for most people to take in. If people have not experienced this, of course they do not understand. How could they? Best to spare them?
Thank you. I think what we experience is so very far out of general comprehension that it takes a really good friend to try to understand. Sorts them out, perhaps.
 

Dutchman

Registered User
May 26, 2017
1,622
0
74
Devon, Totnes
Haven't been around for a while. So very, very sorry to learn of your bereavements @Old Flopsy and @blackmortimer. I do hope that you are both able to find some peace and love.

@Dutchman my OH and I didn't make many/any friends. His developing dementia through his 50s ruled out socialising. He's been in care for 2 years now after around 12 under my care. In the last year I have begun to make new friends, quite deliberately, and I only stick with the ones who can manage our situation. That mostly means not giving me advice about how I should feel (let alone 'move on'). I've also learnt to say that everything is 'fine' when anyone asks. The truth is too incomprehensible for most people to take in. If people have not experienced this, of course they do not understand. How could they? Best to spare them?
Hi @update2020. Good to hear from you again. I know really what you mean about lost opportunities to make friends. When Bridget was at home it was all I could to get through the day rather than cultivate new relationships even if it was possible to go out on the odd occasion. Bridget was finding it difficult to socialise anyway so things were uncomfortable to say the least ( bit like I’m experiencing now at friends I’m trying to not upset by banter or saying the wrong thing!) I go home tomorrow…..can’t wait! Like you I’m cultivating friends who really understand.
Peter
 

update2020

Registered User
Jan 2, 2020
85
0
Thank you. I think what we experience is so very far out of general comprehension that it takes a really good friend to try to understand. Sorts them out, perhaps.
"so very far out of general comprehension" is just right. Increasingly I find it too painful to 'educate' and don't even try. Better to carpe diem.
 

blackmortimer

Registered User
Jan 2, 2021
294
0
How I sympathise with you, @Dutchman. I have thought over the last years how difficult it would have been if dementia had set in before retirement and relocation. The circle of friends we had then would not have been able, I fear, to have forborne from offering advice etc (several were from different arms of the medical profession) and although some of them had experience of relatives with dementia I suspect they were of different types and their experiences were different from mine. And there's the rub. Not all dementia is the same. Sure each case probably has much in common, but some of the really hard bits are the differences. I think looking back that we're each of us alone with the problem and we have to deal with it in our own way. The last thing we need is well meaning "advice" and "move on " or "join a club" or "get out more" are really bad pieces of advice if all you want to do, as I do at the moment, is crawl away like a wounded animal and sleep until some healing has come to me. So don't be cowed by people, Peter, accept that they're probably well intentioned but finding the thing difficult to get their heads round, and firmly make it clear that you need to deal with this thing your way, not theirs or the text book's or whatever. If they're offended then are they truly friends? anyway, Bridget is more important than anuy of them. God bless.
 

Dutchman

Registered User
May 26, 2017
1,622
0
74
Devon, Totnes
How I sympathise with you, @Dutchman. I have thought over the last years how difficult it would have been if dementia had set in before retirement and relocation. The circle of friends we had then would not have been able, I fear, to have forborne from offering advice etc (several were from different arms of the medical profession) and although some of them had experience of relatives with dementia I suspect they were of different types and their experiences were different from mine. And there's the rub. Not all dementia is the same. Sure each case probably has much in common, but some of the really hard bits are the differences. I think looking back that we're each of us alone with the problem and we have to deal with it in our own way. The last thing we need is well meaning "advice" and "move on " or "join a club" or "get out more" are really bad pieces of advice if all you want to do, as I do at the moment, is crawl away like a wounded animal and sleep until some healing has come to me. So don't be cowed by people, Peter, accept that they're probably well intentioned but finding the thing difficult to get their heads round, and firmly make it clear that you need to deal with this thing your way, not theirs or the text book's or whatever. If they're offended then are they truly friends? anyway, Bridget is more important than anuy of them. God bless.
How true @blackmortimer , who needs friends that sulk when you are trying to explain the unexplainable?. I don’t expect complete empathy but I do expect a degree of kind understanding

I don’t have time or the energy for this and I’ve now managed to get to bed away from the uncomfortable atmosphere and leaving their place and going home tomorrow morning to see Bridget and my real steadfast friends.

God bless you Blackmortimer for your continued support. Peter
 

Stacey sue

Registered User
Jan 24, 2020
115
0
Sorry to read these passing of loved ones, Few people know what it is like to live like this. I think you have to experience it to really understand. I am less tolerant and avoid people and family that tell me life goes on and positive thinking is the way. Condolences to you Blackmortimer and Old flopsey.
 

blackmortimer

Registered User
Jan 2, 2021
294
0
The trouble is, @Stacey sue, that it's not only family and friends who peddle the "life must go on" trope. I was thinking about this very recently in the light of this conversation and I recalled vividly a conversation with the consultant psychiatrist in charge of Margaret when she was in hospital. She asked about how I was coping and then went on to talk about all the things I should be doing now I was, as it were, relieved of caring duties. I remember thinking how little she seemed to know - and this was a professional dealing day in and day out with dementia patients and their families! But then, as you say, you have to experience it to understand it. Which is why this forum is such a valuable resource. God bless
 

Violet Jane

Registered User
Aug 23, 2021
570
0
This is an interesting and sad discussion. One of the hardest things about dementia is the loss of friends when you most need their support. As for people trotting out platitudes about ‘moving on’, ‘joining a club’ ‘getting out there again’ etc, whilst they can betray a selfishness on the speaker’s part they can equally well be a reflection of the fact that people tend to be solution focused in response to another person’s pain. Many people are not able to just sit with another person’s pain and let him/her express difficult feelings; instead, they feel that they need to offer a practical solution. I suppose that that’s why counsellors are beneficial; they listen without offering unsolicited advice and solutions.

Specifically on the ‘move on’ advice, whilst this might seem crass and insensitive - and the timing of such advice is crucial - nevertheless it is right to the extent that if a person never moves from the place that s/he is at s/he will never be able to make a meaningful life for him/herself after his/her loss. There is now an understanding that some people experience what is called Complex Grief, which is when people struggle to move through the ‘normal’ stages of grief (yes, I know that there are arguments about stages of grief and what is normal), and I wouldn’t be at all surprised if people who have cared for a loved one with dementia are more likely to experience this as dementia care followed by bereavement encompasses a unique combination of very difficult things: the gradual loss to the carer of the loved one over a period of years; the estrangement from family and friends; the loss of the carer’s identity as a person independent of the loved one and, sometimes, the loss of confidence around other people after years of living a very restricted and isolated life based around the needs of the loved one.