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Dementia’s journey

Old Flopsy

Registered User
Sep 12, 2019
204
0
Oh @Dutchman I do hope the Admiral nurse was able to phone you today.

I had my 2nd jab yesterday and my arm is quite tender today- but in three weeks time we will be 'covered'.

I too keep going over and over the reasons for the current situation and wondering if I could have dealt with the problems another way. It's the guilt- going over and over it in my mind.

I will visit OH on Thursday so now I have 24 buns to make- something useful to do and a treat for the residents on Thursday.
 

kindred

Registered User
Apr 8, 2018
2,633
0
Peter, all sympathy. I think we more or less have to accept some things are the madness of dementia not a logical reaction to the way we were.
Keith said to me, Geraldine Taylor is dead and I went to her funeral.
But you would surely caution me against taking that to heart?
With love, kindredx
 

Dutchman

Registered User
May 26, 2017
1,090
0
73
Devon
Thank you @kindred and @Old Flopsy for your kind support and comfort.

The admiral nurse hasn’t phoned yet. They’re always extremely busy. I’ve just got back from a visit. Bridget was asleep in the sun lounge but I tapped on the windows and got her to wake up. She looked at me, smiled, but then you could see her trying to make sense of who I am. I look at her and then, babbling like an idiot, start saying “ I love you so much” “ it’s me Peter “, as though this means anything to her. Then I get choked up and don’t want her to see me crying.

I just didn’t know what to say to her! I want a connection but it can never be and it’s not fair on either of us to expect one. But I’m so desperate. So I come away upset as usual. Apparently next week they’re planning to open the home again to visits

Peter
 

blackmortimer

Registered User
Jan 2, 2021
99
0
Thank you @kindred and @Old Flopsy for your kind support and comfort.

The admiral nurse hasn’t phoned yet. They’re always extremely busy. I’ve just got back from a visit. Bridget was asleep in the sun lounge but I tapped on the windows and got her to wake up. She looked at me, smiled, but then you could see her trying to make sense of who I am. I look at her and then, babbling like an idiot, start saying “ I love you so much” “ it’s me Peter “, as though this means anything to her. Then I get choked up and don’t want her to see me crying.

I just didn’t know what to say to her! I want a connection but it can never be and it’s not fair on either of us to expect one. But I’m so desperate. So I come away upset as usual. Apparently next week they’re planning to open the home again to visits

Peter
What you say echoes what I and I suspect most or all of us here feel, @Dutchman . We're desperate for some token of how things used to be or a sign of some "improvement", that things aren't as we know deep down they are. Then you realise the truth that you don't want to acknowledge - daren't acknowledge - that it's not going to magically get better, there's no cure and no point trying to fool yourself. But you do because you have to in order to preserve your own sanity, perhaps. My son went to see Margaret on Sunday but tells me he's not sure she recognised him. She seemed to acknowledge the names of family members but wasn't responsive to them - including me - and ended up telling him she'd had enough of him and abruptly dismissed him. He was obviously upset and I had to talk to him seriously about the whole situation. I think it was therapeutic for both of us, at least I hope it was for him. He was more despondent about the situation than I'd seen him before and that was dispiriting for me but I think our chat was worthwhile. We have both agreed that Margaret doesn't need us, that her world is now that "distant land" where we can't enter and that it's no use pretending we can. Yesterday I had a bad day as a result. Today better, perhaps because I had to do some administrative things now that we've got a Court of Protection deputyship order to look after Margaret's affairs. All very straightforward but entails doing things and this does help keep the demons at a distance.

Sorry, I've gone on rather but what I think I'm trying to say is that I understand exactly what you and @Old Flopsy and the others are going through and I hope this may be some strength to you all.

God bless
 

Pusskins

Registered User
Jun 6, 2020
247
0
New Zealand
I’m getting a haircut today after around 6 months so I’m quite excited about have much shorter hair. I haven’t gone bald like many guys I know. The last time it was this long was when I was 20 years old. Pathetic isn’t it that this could brighten my day!

I’ve checked on Bridget and she having her tea and biscuits and generally ok. I’ll see her later. I wish I had a pet to talk to. We used to have two cats who I talked to all the time and they were very friendly and wanted cuddling all the time. Simple things I miss terribly. Now that lockdown is easing perhaps there’ll be more opportunities to get one ( or a dog) - who knows?

hope you all have a peaceful day, one without too much upset

Peter
I hope having a pet will help you, Peter. I have a dog and 2 cats and unfortunately they're not enough to quell the grief I feel. Am seriously considering bringing MH home.
 

None the Wiser

Registered User
Feb 3, 2020
207
0
I saw my husband again yesterday. He seems fine, and I’ve no need to worry about him. He even seemed to show some recognition of me. It’s so strange coming away though. After all that intense time of looking after him at home I just feel I’m left with nothing. I think it’s partly to do with the fact that when I visit him I am the one having to lead any talk, and it’s not really a conversation. The communication is very limited, totally one sided really, as he has no ability to be curious about my life at all. In addition, after awhile, like your son @blackmortimer, I was told by my husband that he’d had enough and it was time for him to go.
I also relate to the guilt about wishing you’d done things differently. I spent a lot of time desperate to have some time to myself, really not enjoying the role of Carer and constantly dreaming about how wonderful it would be once I got my ‘freedom‘ back! Well, now I have more freedom than I know what to do with, and I wish he was back at home. He seems more settled in the home than he was here, which makes me question whether I was a cause of his high anxiety.
Does anyone else feel that they’re not living in the real world at the moment?
 

Dutchman

Registered User
May 26, 2017
1,090
0
73
Devon
Thank you all for your support. Again I’m humbled by how much you care.

@Pusskins please consider very carefully all the implications of bringing him home. I do know very well how you feel as I considered the same thing and very nearly did it some months after Bridget went into the home.
It was only the intervention of the doctor that stopped me. He more or less told me straight that it would end up in disaster and I’d lose the care home room anyway, I would lose my health and then be no good to care for her.

I’m sorry if this is blunt but once you do this you’ve burnt bridges and rooms are like gold dust around here. Please consider that the home has staff night and day, specialist facilities, good connections with doctors and other organisations and loads of other quick things they can put in place that you would find difficult. I once waited on my own for 11 hours for a doctor to call while Bridget was acting up.

Believe me I know how much you’re hurting and how tempting it is to feel bringing our love one home would cure everything.

please get back to us and talk again. We care very much for you

Peter
 

Stacey sue

Registered User
Jan 24, 2020
102
0
Hi All, I can relate to you all on here,there isn’t a day goes by when I think about bringing MH home! The quilt and loneliness never leaves. But I don’t think I could look after him as well as the care home.The fact he is never going to get better or even stay the same as he is at the moment stops me. There is definitely comfort in knowing we feel the same.
 

Dutchman

Registered User
May 26, 2017
1,090
0
73
Devon
Hello @Pusskins. I writing to say that my last post to you was a bit insensitive and I apologise. I said I know how you feel given that I’ve felt similar emotions to you but, of course, I don’t know how you feel at all. I can guess, imagine and empathise but in the end we’re all doing this on our own with our unique kind of grief. So sorry if I presumed to know.

There's a danger of an expectation that we want other to “get over it” or at least “move on” because it’s human nature to want to others to suffer less. I’ve felt many times that friends and family want me to be “normal” again but, of course, that can never be.
All I know is that all I can ever offer is to listen and just be there.

I’ve just heard that I can go inside the home as from next Monday. I have to be in Bridget’s room away from others and need a test first and wear PPE all the time. Hooray some have said, at last, but I’m full of anxiety about it. I don’t know how to be with Bridget anymore and I’m afraid of letting her down by being upset. Any tips from anyone would be helpful

Peter
 
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Pusskins

Registered User
Jun 6, 2020
247
0
New Zealand
Hello @Pusskins. I writing to say that my last post to you was a bit insensitive and I apologise. I said I know how you feel given that I’ve felt similar emotions to you but, of course, I don’t know how you feel at all. I can guess, imagine and empathise but in the end we’re all doing this on our own with our unique kind of grief. So sorry if I presumed to know.

There's a danger of an expectation that we want other to “get over it” or at least “move on” because it’s human nature to want to others to suffer less. I’ve felt many times that friends and family want me to be “normal” again but, of course, that can never be.
All I know is that all I can ever offer is to listen and just be there.

I’ve just heard that I can go inside the home as from next Monday. I have to be in Bridget’s room away from others and need a test first and wear PPE all the time. Hooray some have said, at last, but I’m full of anxiety about it. I don’t know how to be with Bridget anymore and I’m afraid of letting her down by being upset. Any tips from anyone would be helpful

Peter
Hello @Dutchman

Don't worry, I didn't think your post was blunt at all. I'm not going to do anything rash. Initially I will bring him home for a weekend. I will probably feel at the end of that, that it's not going to work. My next step will be to go for Plan B, which is to move to the town where he is in care. At least then I could see him as much as I'd like and take him out for ice cream or a picnic etc. if I'm living there, I can probably take him to my new abode for a cuppa. I withdrew our property from the market as I'm finding the stress of it all just too much. In the meantime, I will work at a slower pace to clear things out, throw things out etc before attempting the property ladder again. Thank you for your concern.
 

Dutchman

Registered User
May 26, 2017
1,090
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73
Devon
I’m in strange mood today in that I’m lethargic and can’t get my mojo working at all. The plan was to take my old cycle and renovate it back to its glory days. Something to do. But I’ve realised I’ve no interest in something unless Bridget is there to share. It reminds me of loss and has just increased my feelings of loneliness.
It’s my counsellor meeting this morning but I’m not sure what to say because I’ve sort of run out of ideas of how to make things better, even by the smallest amount. I think I’ll let her determine how it goes. I sometimes feel I’m coasting in neutral, just getting through the day .

I need to get up I suppose, face the day.

speak to you all later . Peter
 

None the Wiser

Registered User
Feb 3, 2020
207
0
I’m with you Peter -feeling exactly the same. Had planned to do food shopping, but really can’t face it. However, sitting here isn’t going to work for me either.
Hope we can both find something that makes us smile today.
Sending strength!
 

Old Flopsy

Registered User
Sep 12, 2019
204
0
@Dutchman & @None the Wiser Yes me too- the days just drag, then it's night time and we draw the curtains to sit alone till it's time for bed- the loneliness is awful after decades of living with someone. Today I am visiting OH in the care home- I just hope he is in a good mood and not miserable and 'wanting to come home'.
 

Dutchman

Registered User
May 26, 2017
1,090
0
73
Devon
I’ve realised that my expectations about most things in this dementia jourare way too high. I’ve criticised myself if I don't visit the home, if I don’t feel like doing everything on my “to do” list for the day, if I just want to stay in bed a little longer, if I don’t want to follow health advice by today’s health gurus and if I just feel lonely and depressed, guilty, regretful and just need to cry at the drop of a hat.

For me it’s a comfort in some ways that I fail and realise that I’m suffering from an illness called grief and like any illness it takes it’s toll on my health. We need to take care of ourselves as we would do in illnesses.

Be kind to yourself today and know that we’re only human and we’ve done the very best at that moment. No one can tell us otherwise .

peter
 

Old Flopsy

Registered User
Sep 12, 2019
204
0
Hi @Dutchman - yes we do need to take care of ourselves.

My visit to see OH in the care home yesterday was a bit traumatic- he wanted to know when I was taking him home- which was very upsetting.

He was brought into the visitors room in a wheelchair and looked so thin and boney- a shadow of his previous self. It's so hard to witness these changes.

When It was time for me to leave the carer said 'are you saying goodbye to your lovely wife?'- he said 'she's not my wife' - I just let the comment go- no point in asking what he meant. I managed to hold it together- till I got back to the car.

Take care of yourself Peter.
 

blackmortimer

Registered User
Jan 2, 2021
99
0
I’ve realised that my expectations about most things in this dementia jourare way too high. I’ve criticised myself if I don't visit the home, if I don’t feel like doing everything on my “to do” list for the day, if I just want to stay in bed a little longer, if I don’t want to follow health advice by today’s health gurus and if I just feel lonely and depressed, guilty, regretful and just need to cry at the drop of a hat.

For me it’s a comfort in some ways that I fail and realise that I’m suffering from an illness called grief and like any illness it takes it’s toll on my health. We need to take care of ourselves as we would do in illnesses.

Be kind to yourself today and know that we’re only human and we’ve done the very best at that moment. No one can tell us otherwise .

peter
I think that's very good advice, Peter. Take care of ourselves. Easier said than done, though. After years of caring and putting someone else ahead of me, it's difficult to grasp that we've all been virtually "groomed" into believing that we're not good enough, not up to the task, if we'd only try harder we'd be better carers, better human beings even. Like you I criticise myself if I don't get round to doing the things I've mentally put on the list to be done. I find I have to literally talk to myself and tell myself that the caring's now someone else's job, that they're far better at it because they've got the skill, the training, the experience and of course the facilities. Sometimes it works, more often not.

So you're by no mean alone, Peter. You mentioned a while back getting pet. I would recommend you do. At least it gives you another creature to care about and look after and a creature who may repay your caring with what passes in the animal world for love. When the dog comes and barks at me for a walk or for feeding or to go out into the garden, it reminds me that I have responsibilities and this is therapeutic. As you say, grief is an illness and we all need therapy I think.

God bless,
 

Pusskins

Registered User
Jun 6, 2020
247
0
New Zealand
I’ve realised that my expectations about most things in this dementia jourare way too high. I’ve criticised myself if I don't visit the home, if I don’t feel like doing everything on my “to do” list for the day, if I just want to stay in bed a little longer, if I don’t want to follow health advice by today’s health gurus and if I just feel lonely and depressed, guilty, regretful and just need to cry at the drop of a hat.

For me it’s a comfort in some ways that I fail and realise that I’m suffering from an illness called grief and like any illness it takes it’s toll on my health. We need to take care of ourselves as we would do in illnesses.

Be kind to yourself today and know that we’re only human and we’ve done the very best at that moment. No one can tell us otherwise .

peter
@Dutchman The hardest thing for me is knowing there's no way back to what used to be. I think part of the reason I'm moving from here is because I no longer have any interest in it. MH and I have built it up these past 20 years, but he's no longer here with me and I just can't raise any interest. The grief is overwhelming and life has no meaning any more. I feel like I've lost my purpose in life.
 

blackmortimer

Registered User
Jan 2, 2021
99
0
@Dutchman The hardest thing for me is knowing there's no way back to what used to be. I think part of the reason I'm moving from here is because I no longer have any interest in it. MH and I have built it up these past 20 years, but he's no longer here with me and I just can't raise any interest. The grief is overwhelming and life has no meaning any more. I feel like I've lost my purpose in life.
I know what you mean @Pusskins . I often feel that way. I used to take a great pride in my garden even though I'm not green-fingered. Margaret used to plan it and I carried it out and it worked out well. Then when dementia set in and she could no longer plan sensibly I tried to keep as she had wanted it and, in the later stages when she was still at home, it became a refuge when it all became too much. It gave me an excuse to get some fresh air and a break from the drudgery of caring. Now that she's in the nursing home I don't have the same interest. I just go through the motions. Sometimes I delude myself into thinking perhaps there will be a miracle, perhaps she'll get better and if that should happen everything should be in order for her to come back to. But I know that won't happen and like you I've wondered about whether I should up sticks and move somewhere smaller and nearer to the home. But that task daunts me. I can't face the thought of being somewhere that doesn't reflect Margaret's tastes, her sometimes eccentric but often brilliant decorative ideas. So I'm stuck in a time warp clinging on, I suppose, to the memories of Margaret which people will no doubt say isn't altogether healthy, I suppose, but then again what do they know? To paraphrase my favourite Frank Sinatra saying - I'll believe anything that will get me through the day!

God bless
 

Pusskins

Registered User
Jun 6, 2020
247
0
New Zealand
I saw my husband again yesterday. He seems fine, and I’ve no need to worry about him. He even seemed to show some recognition of me. It’s so strange coming away though. After all that intense time of looking after him at home I just feel I’m left with nothing. I think it’s partly to do with the fact that when I visit him I am the one having to lead any talk, and it’s not really a conversation. The communication is very limited, totally one sided really, as he has no ability to be curious about my life at all. In addition, after awhile, like your son @blackmortimer, I was told by my husband that he’d had enough and it was time for him to go.
I also relate to the guilt about wishing you’d done things differently. I spent a lot of time desperate to have some time to myself, really not enjoying the role of Carer and constantly dreaming about how wonderful it would be once I got my ‘freedom‘ back! Well, now I have more freedom than I know what to do with, and I wish he was back at home. He seems more settled in the home than he was here, which makes me question whether I was a cause of his high anxiety.
Does anyone else feel that they’re not living in the real world at the moment?
@None the Wiser I feel totally adrift. Nothing is as I want it to be. If only I could go back far enough to have the conversation I needed to have with MH. But it's impossible now and my regrets and grief overwhelm me.
 

Pusskins

Registered User
Jun 6, 2020
247
0
New Zealand
I know what you mean @Pusskins . I often feel that way. I used to take a great pride in my garden even though I'm not green-fingered. Margaret used to plan it and I carried it out and it worked out well. Then when dementia set in and she could no longer plan sensibly I tried to keep as she had wanted it and, in the later stages when she was still at home, it became a refuge when it all became too much. It gave me an excuse to get some fresh air and a break from the drudgery of caring. Now that she's in the nursing home I don't have the same interest. I just go through the motions. Sometimes I delude myself into thinking perhaps there will be a miracle, perhaps she'll get better and if that should happen everything should be in order for her to come back to. But I know that won't happen and like you I've wondered about whether I should up sticks and move somewhere smaller and nearer to the home. But that task daunts me. I can't face the thought of being somewhere that doesn't reflect Margaret's tastes, her sometimes eccentric but often brilliant decorative ideas. So I'm stuck in a time warp clinging on, I suppose, to the memories of Margaret which people will no doubt say isn't altogether healthy, I suppose, but then again what do they know? To paraphrase my favourite Frank Sinatra saying - I'll believe anything that will get me through the day!

God bless
@blackmortimer Thank you for the Frank Sinatra saying. I need that and will refer to it constantly.