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Dementia’s journey

Dutchman

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May 26, 2017
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Hi @Old Flopsy. It’s a times like this that I miss her most. I may come across as weak and not able to cope but I’ve so much I can’t bear lately. As you say you know this “on your own feeling”. I’ve had it mentioned that i should ask more people to help me, friends, neighbours and family but there really is no substitute for you love one, is there?

If this goes on longer I’ve a feeling I’ll slip into depression. I phoned the Samaritans yesterday just to speak to someone but the very one person I want I can’t have. Thank God I wasn’t this ill when she was at home otherwise I’d have landed up in hospital and Bridget taken off into care.
Thanks for your reply. Means a lot
Peter
 

Dutchman

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May 26, 2017
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Hello @Dutchman. I haven't posted for a while because like you I'm in a state of recovery and I know exactly how you feel and was moved by your recent post because I know just how you feel. It's hard after so many years of marriage not just having someone to talk to, to moan at maybe but above all just to be there. I can't offer a magic bullet but I've learnt very quickly to try to be positive, to make small but achievable goals and ask for help if you need it. I was lucky in that here we have a dedicated stroke recovery team consisting of physios, dieticians and speech and language therapists who have been a wonderful help to me in getting back (literally!) on my feet and able to face the future. Remember that there are good friends here who do listen. You're not alone. God bless.
Thanks @blackmortimer. I’m really glad you’re getting support. You seem a much stronger person than me because I cry, literally cry at the unfairness of having to do this on my own. Pathetic. I use to cry for just Bridget now I cry at my own suffering and for her.
I wish I could be positive like you but I didn’t visit today ( I’m too unwell) and I miss her, I hurt, I’m worried about my condition that has turned a nasty corner and most things are a struggle. So these all drag me down.
Thanks again for replying
Peter
 

Jaded'n'faded

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Jan 23, 2019
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High Peak
I don't think you are weak at all, Peter! This is one of those times when you really miss that special part of marriage, when just having the other person there means so much.

I'm divorced (my choice!) and don't intend to re-marry. I'm mostly happy living on my own but there are certain things I miss about being a twosome. One is when I've been unwell - no one to say, Are you OK? Do you want a cuppa? Can I get you a blanket or something? And more than that, it's just the exchange of looks and smiles, knowing someone is sharing this with you, knowing they care - all these things really help you feel better. Yes, others can help but it's just not the same, so I really understand why you're struggling with this and the knowledge you'll never experience the twosome thing again.

We're always here for you. We can't bring Bridget home or make her better but we do care...

Wishing you a speedy recovery.
 

Dutchman

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May 26, 2017
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I don't think you are weak at all, Peter! This is one of those times when you really miss that special part of marriage, when just having the other person there means so much.

I'm divorced (my choice!) and don't intend to re-marry. I'm mostly happy living on my own but there are certain things I miss about being a twosome. One is when I've been unwell - no one to say, Are you OK? Do you want a cuppa? Can I get you a blanket or something? And more than that, it's just the exchange of looks and smiles, knowing someone is sharing this with you, knowing they care - all these things really help you feel better. Yes, others can help but it's just not the same, so I really understand why you're struggling with this and the knowledge you'll never experience the twosome thing again.

We're always here for you. We can't bring Bridget home or make her better but we do care...

Wishing you a speedy recovery.
Thank you @Jaded'n'faded. Wouldn’t it be nice if we could all somehow share but in real life, not virtually. It’s the physical part that’s missing. The world today is so disjointed and all “out there”. But at least we have this, our Forum.
Thank you all for your kind support
 

Dutchman

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May 26, 2017
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When I first started here on the Forum back in 2017 life was just being affected by Bridget’s dementia. It seems a lifetime since then. A loss of my wife even though she’s still with us but only in body. So 6 years that have turned my life upside down.

You’ve all been with me, some since the beginning and others I met along the way. We hang in there for better or worse. What’s important is that there is love and support which can only be given through words. But we’ve done what we can within this limitation.

It’s not just about the nuts and bolts of dementia problems but the very particular and intimate emotions and feelings that this evil disease creates for those of us that are left behind.
God bless. Peter
 

Violet Jane

Registered User
Aug 23, 2021
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Peter, whilst you are obviously feeling so unwell could you not reach out, on a temporary basis, to family and friends? Could you go and stay with your daughter for a few days until you pick up a bit? Alternatively, could you tell local friends that you are feeling unwell and low and ask for their help, even if it’s just a meal delivered to your home?
 

Dutchman

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May 26, 2017
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Devon, Totnes
Peter, whilst you are obviously feeling so unwell could you not reach out, on a temporary basis, to family and friends? Could you go and stay with your daughter for a few days until you pick up a bit? Alternatively, could you tell local friends that you are feeling unwell and low and ask for their help, even if it’s just a meal delivered to your home?
Yes I could do all that but I’m stubbornly independent probably for my own good. I do appreciate your thoughts and concerns.
 

Dutchman

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May 26, 2017
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The problem wasn’t so bad as I could just about handle the resultant pain from the hernia op and then I get an infection which has given me swelling, a severe rash and generally making me feel awful.

Mind you, compared to a rotten cold or flu I suppose it can be handled. My constant comfort is that Bridget seems happy ish and she’s Covid free and my darling wife has some form of contentment.
Thanks for all the good wishes. Peter
 

Dutchman

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May 26, 2017
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Devon, Totnes
For a number of you this won’t seem a big deal but today, when I was visiting Bridget and preparing to help her with her dinner, she deliberately reached up and gently stroked my bare arm up and down several times. And then wanted to be kissed.

An expression of affection. This is the first time, in I can’t remember when, that she wanted to show me she cares, deep down it’s there somewhere. How I cling on to the littlest thing that she has left. Tomorrow she’ll have forgotten but for today it’s enough.

Problem is of course that I left wanting more, like a dog getting the occasional pat from its owner and then nuzzling his hand for a repeat.
 

Old Flopsy

Registered User
Sep 12, 2019
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Hi @Dutchman So lovely to read your post. She must have sensed that you are suffering and needed a display of affection. Treasure the moment.
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
Hi @Dutchman So lovely to read your post. She must have sensed that you are suffering and needed a display of affection. Treasure the moment.
Over the past 6 years with 3 of those years with Bridget in the home, I’ve probably experienced most emotions. But the deepest feeling is one of love and empathy with what she’s was going through back in 2017-19. She more content now and at ease. That’s the only way I make sense of it all and develop some sort of resolution.
 

Dutchman

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May 26, 2017
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It’s Sunday. I’m due for Church this morning but I’m reluctant as it miserable outside and I’m comfortable in bed. But I may go as I haven’t seen them for ages.

I’m recovering slowly but the infection has put me back somewhat and I get little sleep because it itches like made ( 2nd load of antibiotics). There’s one thing I don’t worry about quite so much now and that’s Bridget’s care. I liken it to her being looked after by my family safe knowing that she’s loved and in the care of very capable staff.

I was wondering what the new costs will be from the home in April. I suspect the increase will be dramatic due to spiralling price of energy, food etc. Oh well, nothing I can do or the Council - got to be paid.
 

Dutchman

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May 26, 2017
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Devon, Totnes
I’ve been trying to think differently but I keep coming back to the feeling that my wife is someone I used to know. This may sound harsh but a few hours a week with someone who cannot talk to me, me trying to keep the atmosphere lively, well, it’s like trying to keep a relationship going with thousands of miles in between, for years.

Bridget doesn’t know all this, of course, but I only have to look at the photos I’ve taken since she’s been at the home up to recently and I cry for my Bridget, as I’ve done today. She looks at me and smiles and I pretend she’s only mine and she could be back home. When’s that longing ever going to end? It’s torture and it never ever goes away.
 
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Andy54

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Sep 24, 2020
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@Dutchman, I think that that is probably the hardest part - the huge gulf between the person before us now and the person they used to be just a few short years ago. I find it more and more difficult not to be despondent after getting home from visits but I still go to visits full of hope.
 

Dutchman

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May 26, 2017
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Devon, Totnes
@Dutchman, I think that that is probably the hardest part - the huge gulf between the person before us now and the person they used to be just a few short years ago. I find it more and more difficult not to be despondent after getting home from visits but I still go to visits full of hope.
Hi @Andy54. A bit like you I arrive home and think that went well, she was good today and it was an altogether pleasant enough visit. But I have to remind myself that it’s all because of the care and perseverance of the home staff that’s changed Bridget from a dementia nightmare to my wife who’s content and seemingly happy.

I’m off soon to see her and help her with her dinner. The rest of the afternoon will be long and probably a bit miserable. I hope you can get some peace today
 

Thethirdmrsc

Registered User
Apr 4, 2018
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I saw my husband on Sunday and he was not in a good place at all, and after an hour, I left in tears after he swore at me. I was back today, and what a difference, he held my hand, let me do his nails and things, and I sat and knitted and we listened to a cd. I find that now , his mood affects me, so if he is good, I am, and if he is down, then so am I. It’s a real weekly rollercoaster.
 

Dutchman

Registered User
May 26, 2017
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74
Devon, Totnes
I had a good day with Bridget today with her speaking, smiling, asking some questions, recognising me and her in photos. More knowing than ever - all this that hasn’t happened for a very long time.
But, although I should be please and satisfied, I find it fools my brain and I long for more and think she getting better and oh, how I wish this could all happen back home, I wish we could just pick up where we were before dementia.
So that’s my rollercoaster of emotions because I don’t know how long this is going to last
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
As I repeatedly alter the house when moving a bit of furniture or paint a wall, I’m changing this house from ours to mine. But my mind won’t accept that she’s not coming home and what would she say to my alterations.

On the one hand I’m making the house the way I want I it ( and who’s going to criticise me anyway?) but the then I feel the more I do reinforces that she won’t return, and to have her back is what I want most of all.

There’s this tremendous need in me to keep Bridget the way she was normally, before dementia. I know I’m fooling myself like an idiot but I can’t help it as I miss her very much.