• 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

kindred

Registered User
Apr 8, 2018
2,842
0
Hello all. I’ll try to reach as many friends as I can @blackmortimer @kindred @Pusskins @Bun @lollyc @Picture @Grannie G @canary @CAL Y and those I’ve missed - sorry.

Whatever you’re going through today, by now I’ve some idea of your emotions and feelings and can only share in the grief and sadness you have.
I’ve realise now that no matter how much we reach out to others ( friends, counsellors, Samaritans, doctors, Forum friends even, family ) we are on our own once we close the house door and sit quietly on the sofa. But things would be a hundred times worse without all this help and I hope I have helped in a small way with whatever I’ve posted.

Yesterday I visited Bridget and sat with her over lunch and helped her feed. I always always get emotional when I tell her I love her and as I rested my head on her arm she lent forward and kissed me on my head. Like saying “there, it’s ok, I’m ok I love you too”. Of course I’m probably reading too much into this little show of affection but I grab at anything I can. My mind fools me into thinking I want more but, of course, it’s impossible and anyway I don’t want her to have lasting feelings and miss me when I’m not there. It’s an awful situation. You want and you don’t want.

It’s Sunday - a dreadful day for me as it has miserable memories of dementia behaviour. I’m off to church later and then a concert in the afternoon. I having an operation soon which means isolation ( covid) and I won’t be able to see Bridget for a week. Going to be tough 😩
Bless you all. Peter
Peter, thank you, much appreciated as is all the help, support and insight you give us, God bless you too.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,271
0
Kent
I’ve realise now that no matter how much we reach out to others ( friends, counsellors, Samaritans, doctors, Forum friends even, family ) we are on our own once we close the house door and sit quietly on the sofa.

Never a truer word @Dutchman. We are the only ones who can make life better for ourselves.

When we took my mother into residential care, I said I hoped she'd be happy, meaning I hoped the care home we had decided on would treat her well and give her some peace.
Her reply " I don't expect to be happy`' showed an unexpected insight into her situation.

Sometimes our expectations outweigh the reality of life.

Since my husband was diagnosed in 2005 , the concept of happiness was not on the cards. Since he died in 2014, there is a hole which will never be filled but I know the quality of the life ahead of me depends on me alone and how I try to help myself.

Of course other people are important but as you say, when we are home alone it is down to us how we view that time.

Make the most of Bridget while you have her, even if she is being looked after by others. The four years my husband was in residential care were the best four years of our lives together since dementia entered our lives.
 

Bun

Registered User
Oct 2, 2021
57
0
@blackmortimer @kindred @Pusskins @Bun @lollyc @Picture @Grannie G @canary @CAL Y and those I’ve missed - sorry.

Whatever you’re going through today, by now I’ve some idea of your emotions and feelings and can only share in the grief and sadness you have.
I’ve realise now that no matter how much we reach out to others ( friends, counsellors, Samaritans, doctors, Forum friends even, family ) we are on our own once we close the house door and sit quietly on the sofa. But things would be a hundred times worse without all this help and I hope I have helped in a small way with whatever I’ve posted.

Yesterday I visited Bridget and sat with her over lunch and helped her feed. I always always get emotional when I tell her I love her and as I rested my head on her arm she lent forward and kissed me on my head. Like saying “there, it’s ok, I’m ok I love you too”. Of course I’m probably reading too much into this little show of affection but I grab at anything I can. My mind fools me into thinking I want more but, of course, it’s impossible and anyway I don’t want her to have lasting feelings and miss me when I’m not there. It’s an awful situation. You want and you don’t want.

It’s Sunday - a dreadful day for me as it has miserable memories of dementia behaviour. I’m off to church later and then a concert in the afternoon. I’m having an operation (hernia) soon ( after Christmas) which means isolation ( covid) and I won’t be able to see Bridget for a week. Going to be tough 😩
Bless you all.

Hello all. I’ll try to reach as many friends as I can @blackmortimer @kindred @Pusskins @Bun @lollyc @Picture @Grannie G @canary @CAL Y and those I’ve missed - sorry.

Whatever you’re going through today, by now I’ve some idea of your emotions and feelings and can only share in the grief and sadness you have.
I’ve realise now that no matter how much we reach out to others ( friends, counsellors, Samaritans, doctors, Forum friends even, family ) we are on our own once we close the house door and sit quietly on the sofa. But things would be a hundred times worse without all this help and I hope I have helped in a small way with whatever I’ve posted.

Yesterday I visited Bridget and sat with her over lunch and helped her feed. I always always get emotional when I tell her I love her and as I rested my head on her arm she lent forward and kissed me on my head. Like saying “there, it’s ok, I’m ok I love you too”. Of course I’m probably reading too much into this little show of affection but I grab at anything I can. My mind fools me into thinking I want more but, of course, it’s impossible and anyway I don’t want her to have lasting feelings and miss me when I’m not there. It’s an awful situation. You want and you don’t want.

It’s Sunday - a dreadful day for me as it has miserable memories of dementia behaviour. I’m off to church later and then a concert in the afternoon. I having an operation soon which means isolation ( covid) and I won’t be able to see Bridget for a week. Going to be tough 😩
Bless you all. Peter
Peter, hope all goes well for your operation. Thank u for your kind message. Saw my dear husband 2day, he gets very upset when l leave him, but I hope when I have gone, he won't remember. I have started to have counselling, hopefully it will help. My husband has been in care 9months. I am not allowed in the main building.saw his room for the first time 2day, it is on ground floor( found that out ) so I asked to look through the window, it is a nice room. Feel happier now I have seen it, why it was never suggested before now I don't know, because not being able to see his room, has been very upsetting. Hope u got comfort going to church, and enjoyed your concert. Bless u look after yourself. Love to Bridget.
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
Our daughter is arranging a big family get together before Christmas ( 18th December) All the family I haven’t seen for at least two years ( Covid lock down) and everyone has replied with seasonal cheer and expectation to the happy event.
Me, I’m not so sure. I don’t want to put on a brave face, be the elephant in the room, pretend all’s ok when it isn’t, having to answer to “how’s Bridget” and pretend I’m brave and coping. But daughter has been kind to host this and I respect the effort.

In many respects I’d rather be on my own and I’ll see her many times over Christmas and that would suit me. I’m sick and tired already of the forced festive cheer, adverts desperately trying to get us buying, the repeated commercialism of Christmas. It all just reminds me of all our losses.
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
Now I’m sitting in Costa Coffee which seems so strange on my own with no Bridget facing me as we used to do. I’ve taken a trip on the bus to see if it takes me close to her home. Can be done but a bit of a walk.

So much I could do own my own but it’s so lonely. No one to chat to, to pass the time of day. We didn’t need much to fill our day, just being together. I’m told it gets easier but what’s “easier” anyway? Life passes by the shop window with couples holding hands and oblivious of losing one another and the grief it brings. Bridget my darling I love you so❤️
 

Bun

Registered User
Oct 2, 2021
57
0
Peter, hope all goes well for your operation. Thank u for your kind message. Saw my dear husband 2day, he gets very upset when l leave him, but I hope when I have gone, he won't remember. I have started to have counselling, hopefully it will help. My husband has been in care 9months. I am not allowed in the main building.saw his room for the first time 2day, it is on ground floor( found that out ) so I asked to look through the window, it is a nice room. Feel happier now I have seen it, why it was never suggested before now I don't know, because not being able to see his room, has been very upsetting. Hope u got comfort going to church, and enjoyed your concert. Bless u look after yourself. Love to Bridget.

Now I’m sitting in Costa Coffee which seems so strange on my own with no Bridget facing me as we used to do. I’ve taken a trip on the bus to see if it takes me close to her home. Can be done but a bit of a walk.

So much I could do own my own but it’s so lonely. No one to chat to, to pass the time of day. We didn’t need much to fill our day, just being together. I’m told it gets easier but what’s “easier” anyway? Life passes by the shop window with couples holding hands and oblivious of losing one another and the grief it brings. Bridget my darling I love you so❤️
Dutchman. Very sorry you are finding your situation very difficult. It is awfull for u. Big hug.
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
Thanks @Bun for your kind response. Not sure about your situation. Are you not allowed in? Or to see his room? At least I can visit Bridget, walk with her, go to her room with flowers and sort her clothes. Are Covid restrictions stopping your inside visits? I’m worried for you
 

Picture

Registered User
Nov 14, 2021
24
0
@Dutchman That sounds so hard. It’s hard to be alone when you’re so used to doing things as a couple. When you say you’re lonely, you don’t want loads of company. Just that one other person.
 

Scarlet Lady

Registered User
Apr 6, 2021
225
0
@Dutchman, as a regular reader of your posts, I hesitate to say something that will undoubtedly sound critical. Your daughter has kindly offered to host what sounds like a lovely family gathering for Christmas. You refuse to allow yourself the pleasure of that enjoyment (or any other, really) because you are too deep in self-pity to do so. That is your choice, of course. But perhaps you need to consider that there are people who love you other than Bridget, who you have sidelined simply because you feel they don’t ‘understand’. Of course they don’t, how could they? Yet they are the people who will be there for you when this all comes to an end, the people who will help you go forward if you will let them. Even if it’s just for the festive period, try to stop wallowing and open yourself up to others. Sorry to sound preachy and hope I haven’t offended.
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
Hello @Scarlet Lady

Your comments regarding “self pity” and “wallowing “are noted. Bit harsh I thought but I trust it’s from a position wanting to care. I lay my emotions bare so I should expect a variety of opinions from those who still love and remain feeling the sadness of loss.
 

Andy54

Registered User
Sep 24, 2020
165
0
@Dutchman. Hello Peter. Maybe you are just giving eloquent voice to you sadness rather than wallowing in self pity. I find that I don't particularly want to go to social occasions where I am likely to be the only "single" person. When it comes to socialising, now more than ever I want to do it on my own terms and not have others expectations heaped upon me. With that in mind I have decided to not to join any of the Christmas "festivities". Loneliness and solitude are two completely different things, there are times when I enjoy solitude but I still feel the loneliness of Deb not being here to share things with.
Regards Andy.
 

Andy54

Registered User
Sep 24, 2020
165
0
Just got back from today's visit - shortest one ever ! 15 minutes of trying to persuade D to stay in my company. She got restless after the first few minutes. I've thought on the last few visits that I seem to have been relegated from familiar friendly face to complete stranger who is just a nuisance invading her space and routine. Not that she really has a routine, I'm told that she is no longer engaging in any of the activities on offer, the best the carer's can hope for is that she will join them for a cup of tea and a biscuit, we'll at least that's something I suppose. Not sure where to go with this one if this is the latest phase of the dementia, how do you visit someone who seems not to want to be in your company.
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
Hi @Andy54 this is a tricky one. I could say keep at it, that your continued visit and presence will, in the end, have an effect on getting D to warm to familiarity of you. Who knows. I suppose in the end all you can do is try.
But the continued non recognition of you will have an effect and I’m here most days if you want to unload and help if I can.

Thanks for your recent reply. Means a lot
Peter
 

Scarlet Lady

Registered User
Apr 6, 2021
225
0
Peter, I want to apologise for my rather blunt post yesterday. This is very much your thread and I do see that you use it as a blog/diary to help yourself through this awful situation as much as anything else. It’s therefore not my place to criticise your motives in doing anything. Sometimes, I shoot from the hip and I certainly don’t want to hurt or offend you.
It’s just that you seem such a lovely, sensitive person who has got himself caught in a mindset that apparently cannot be adjusted. This is causing such dreadful misery and yet you’re reluctant to take any steps which might alleviate this. It’s perhaps not surprising that your loving family may not always know the best way to deal with someone who is so determined to mentally self-flagellate himself for the way things have turned out. (Again, sorry if that’s a hard choice of words.)
I can understand that you may not look forward to Christmas (not many of us do these days) , so you probably need to decide to do whatever you feel best able to cope with. It will be a hard day anyway, but it might be that having people around you other than just Bridget and the care home people could work out better than you think. Sorry, being preachy again, but all the best to you anyway!

C x
 

Bun

Registered User
Oct 2, 2021
57
0
Hi Peter, thank u for your concern. I think you have been very honest about your emotions, I can relate to what you are going through, I call it complicated greaving, our loved one still here but not, I don't think you are wallowing. When you have been with someone many years, it's natural you should miss them. The different emotions you go through, including guilt. My situation... I found out on Sunday, my husband's room is on the ground floor, on the side of the building were I park the car. So I asked to see his room through the window. And I did, after 9months, nice room, why didn't the home tell me his room was behind that window months ago. They are not allowing anyone in main building. You can visit by appointment only, in conservetry on outside of building. Hope you start to feel better in your situation soon, it's hard I know bless you. Try to take care of yourself, dear Bridget is being looked after. Bun
 

Bun

Registered User
Oct 2, 2021
57
0
I didn't realise I had already said about his room. No home not had covid. Been told following government guidelines.
 

Dutchman

Registered User
May 26, 2017
1,820
0
74
Devon, Totnes
Hello @Bun. Thank you for your post. I ask about the situation at the home because Bridget’s home has allowed inside visits for a little while now. What is different about yours?

Just interested for your sake
Peter
 

CAL Y

Registered User
Jul 17, 2021
354
0
Peter, I want to apologise for my rather blunt post yesterday. This is very much your thread and I do see that you use it as a blog/diary to help yourself through this awful situation as much as anything else. It’s therefore not my place to criticise your motives in doing anything. Sometimes, I shoot from the hip and I certainly don’t want to hurt or offend you.
It’s just that you seem such a lovely, sensitive person who has got himself caught in a mindset that apparently cannot be adjusted. This is causing such dreadful misery and yet you’re reluctant to take any steps which might alleviate this. It’s perhaps not surprising that your loving family may not always know the best way to deal with someone who is so determined to mentally self-flagellate himself for the way things have turned out. (Again, sorry if that’s a hard choice of words.)
I can understand that you may not look forward to Christmas (not many of us do these days) , so you probably need to decide to do whatever you feel best able to cope with. It will be a hard day anyway, but it might be that having people around you other than just Bridget and the care home people could work out better than you think. Sorry, being preachy again, but all the best to you anyway!

C x
Hello @ Scarlet Lady. I just want to say that , in spite of the sympathy I feel for Peter I really could have written the same post as you did. Mercifully, the dementia “journey” ended for my husband almost three weeks ago after a cancer diagnosis.
Today was his funeral and I think that I’m now in a better position than many people on this Forum.
As much as I am heartbroken today, my husband is now at peace and I feel that I have been released.
I believe that I can only feel this way because I have accepted the help, care and love of all our friends and family.
I do hope that Peter can do the same as I have. It’s never going to be easy for him but the alternative is much more painful.