Dementia’s journey

Jaded'n'faded

Registered User
Jan 23, 2019
595
High Peak
I’m now been prescribed Diazapam for my emotions. Also on doctors crisis watch over the weekend. This is partly due to my daughter laying down the law about what I should or shouldn’t do. And my wife not responding to me at all and me just wanting some understanding from her which I’m never going to get.

I’m thinking of getting another cat and I’ve seen one at the rescue centre. Who knows? Let’s see!
So glad you went to the rescue centre - I was sure a little kitty there would catch your eye... :)

He/she will be a distraction, a comfort and a confidante. You will know that you are needed and loved and you will have a sense of purpose - all things that seem to be missing from your life right now.
 

Dutchman

Registered User
May 26, 2017
500
Devon
Now Watching a movie at 14.15, then shopping, tea and shower then cinema.No visiting the home today.

ive been asked why I go to the home as Bridget is not able to respond with any loving emotions. I go because I’m holding onto the memory of her physical presence.

I’m a bit like a dog pining and sitting over his masters fallen body. Just to be with her is enough. I haven’t come to terms with the fact that she is lost to me. All the horrible dementia while she was at home seems insignificant compared to the emptiness of her loss
 

Grahamstown

Registered User
Jan 12, 2018
1,588
East of England
I haven’t come to terms with the fact that she is lost to me. All the horrible dementia while she was at home seems insignificant compared to the emptiness of her loss
That is the most difficult aspect of dementia to cope with and I am so sorry. My husband is not as profoundly lost to me as your wife is to you but it’s still horrible. You are doing your best, small steps a bit at a time, not to get used to it but to live just a little and then maybe a bit more.
 

northumbrian_k

Registered User
Mar 2, 2017
923
Newcastle
My sister reports that my wife does not seem to have missed me during my short break in Spain and was quite lady bountiful the other day. Being somewhere we used to go together has brought back all sorts of good memories. There was a rather untidily dressed and uncouth family in the restaurant one night. They put me in mind of Big Daddy (not that one) and the ‘no neck monsters’. My wife would have enjoyed criticising their boorish behaviour. She is far beyond that now and that realisation will always be tinged with sadness. Rather than dwelling upon what we have lost, though, I try to reflect on all the things that were so good about our life together. I am not saying that it is easy, but I hope @Dutchman and all who are in similar situations find the strength they need to get through.
 

Dutchman

Registered User
May 26, 2017
500
Devon
That is the most difficult aspect of dementia to cope with and I am so sorry. My husband is not as profoundly lost to me as your wife is to you but it’s still horrible. You are doing your best, small steps a bit at a time, not to get used to it but to live just a little and then maybe a bit more.
Thank you for your kind reply. I’ve said all this before probably on many postings but there still is with me a terrible sense that I abandoned her to the home to get rid of her dementia behaviour. Many have said that I did the right thing for her sake but my head and heart are full of guilt and regrets.

erhaps if i
That is the most difficult aspect of dementia to cope with and I am so sorry. My husband is not as profoundly lost to me as your wife is to you but it’s still horrible. You are doing your best, small steps a bit at a time, not to get used to it but to live just a little and then maybe a bit more.
Is it The Farewell?I saw it a couple of weeks ago,really enjoyed it
yes just came home. More satisfying if you have someone to talk to afterwards. Another day got through.
 
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DesperateofDevon

Registered User
Jul 7, 2019
2,471
Thank you for your kind reply. I’ve said all this before probably on many postings but there still is with me a terrible sense that I abandoned her to the home to get rid of her dementia behaviour. Many have said that I did the right thing for her sake but my head and heart are full of guilt and regrets.

erhaps if i


yes just came home. More satisfying if you have someone to talk to afterwards. Another day got through.
glad you enjoyed the film.
I’m inspired by you to actually do something for myself that involves socialising! I have a few films I want to see & I saw an amazing high tea reviewed in a series a couple of months ago! I have plans now action is required!

Watch this space!
X
 

Dutchman

Registered User
May 26, 2017
500
Devon
glad you enjoyed the film.
I’m inspired by you to actually do something for myself that involves socialising! I have a few films I want to see & I saw an amazing high tea reviewed in a series a couple of months ago! I have plans now action is required!

Watch this space!
X
I didn’t socialise much just sat in the back row with a bottle of beer.
I went to our free church today. They’re such a friendly bunch and got asked back for dinner. I’m not Christian which they accept, just someone in need of kind company.

I’ve been diagnosed as depressed with the grief and have Diazapam to take and seeing the doctor again tomorrow and the mental health team on Wednesday. I don’t want to take all these pills so I hope an expert on Wednesday can change my way of thinking.
I fully understand now what others on the forum are experiencing and how this is the most worse time of our lives. I would say to any couple in love cherish what you have every day and make each other feel loved every day.

My love goes out to you all on the forum

Saw my wife today..just got back. She looks into the distance most of the time and is restless all the time. She won’t accept any cuddle from me or closeness as she’s just too anxious. I suppose I go for me as I see cleaning her and changing her clothes as an act of love. It doesn’t matter is she can’t reciprocate my feelings.
 
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DesperateofDevon

Registered User
Jul 7, 2019
2,471
I didn’t socialise much just sat in the back row with a bottle of beer.
I went to our free church today. They’re such a friendly bunch and got asked back for dinner. I’m not Christian which they accept, just someone in need of kind company.

I’ve been diagnosed as depressed with the grief and have Diazapam to take and seeing the doctor again tomorrow and the mental health team on Wednesday. I don’t want to take all these pills so I hope an expert on Wednesday can change my way of thinking.
I fully understand now what others on the forum are experiencing and how this is the most worse time of our lives. I would say to any couple in love cherish what you have every day and make each other feel loved every day.

My love goes out to you all on the forum

Saw my wife today..just got back. She looks into the distance most of the time and is restless all the time. She won’t accept any cuddle from me or closeness as she’s just too anxious. I suppose I go for me as I see cleaning her and changing her clothes as an act of love. It doesn’t matter is she can’t reciprocate my feelings.
you have gone through so much recently, it’s a tough time. The medication should help & you are doing your best for your wife. take care
X
 

marshal

Registered User
Sep 6, 2017
59
Dear Dutchman, Your words and thoughts could be mine. My dearest man arrived at his care home on Friday. I feel so lost and broken. I have so much sadness and pain . I cannot put things into words at the moment. I don't think I will ever be able to recover from this.
 

White Rose

Registered User
Nov 4, 2018
341
Today I went to a meal given by a Memory Cafe organiser for a number of carers at her house. Lovely meal, lovely people but, my mind is elsewhere and I cannot relate to their conversations so I feel I’m letting them down a bit. Perhaps it’s a bit early for me for this level of socialisation.

Other carers at this meal have really made big efforts to care for their OH at home with equipment, multiple carers coming in, restructuring their houses. I’ve done nothing like that and I wonder if I could’ve done more to keep her here with me. Then I think, after I’ve done some personal care and changed her at the home, I couldn’t do this 24/7.

I really am trying and I know I can’t hide away for ever but I find social situations stressful as all I can think about is my wife and my future life.
Just to say you really mustn't feel guilty, you did your absolute best for your wife and she's lucky to have you. But also she's in a safe place now with professional care and you need to now think how to look after yourself. Don't know if it would be of interest but there are groups set up under the umbrella name of MeetUps all over the country (find them with a Google search), walking groups are especially popular, maybe there is some group in your area that might interest you.
 

White Rose

Registered User
Nov 4, 2018
341
Dear Dutchman, Your words and thoughts could be mine. My dearest man arrived at his care home on Friday. I feel so lost and broken. I have so much sadness and pain . I cannot put things into words at the moment. I don't think I will ever be able to recover from this.
So heartbreaking to read about the sadness the partners go through when their other half goes into care - it really is a grieving process but I just hope over time you can come to terms with it and find a joy in life again. Mine is some way from going into a care home, so I don't need to think about it yet but I still often cry for the man he was and the life we had.
 

Dutchman

Registered User
May 26, 2017
500
Devon
Dear Dutchman, Your words and thoughts could be mine. My dearest man arrived at his care home on Friday. I feel so lost and broken. I have so much sadness and pain . I cannot put things into words at the moment. I don't think I will ever be able to recover from this.
My heart goes out to you and you know my words aren’t empty because you and me are experiencing the same torment. My biggest surprise and shock was the difference between having her here with her dementia and once she’d gone the emptiness of house. I looked after her and I’d do it all again now I’ve experienced the heartache of her loss. I, like you, just don’t see a future without our loves. The emptiness is frightening. Write again to me if you want me as any support I can give.
 

Dutchman

Registered User
May 26, 2017
500
Devon
So heartbreaking to read about the sadness the partners go through when their other half goes into care - it really is a grieving process but I just hope over time you can come to terms with it and find a joy in life again. Mine is some way from going into a care home, so I don't need to think about it yet but I still often cry for the man he was and the life we had.
My only advice is keep him at home as long as possible. Use any resources you can find. Even using Carers all the time can possibly be less expensive than a care home.
 

Philbo

Registered User
Feb 28, 2017
752
Kent
Hi @Dutchman and @marshal

I share your pain:( - my wife has been in her nursing home for 4 weeks come Friday. If you've read my thread "Respite Woes", you will have seen that the progression from being able to care for her at home has been very rapid.

I am fortunate in that she has remained in her own happy world, so seems to have settled quickly. However, though I have been relieved of my 24/7 caring role, it is proving very hard to adjust to the sadness of leaving her there whenever I visit and the dread of walking into a empty house.

I join other forum members who recommend seeking out opportunities to get out and about socialising. This was singularly the most life-changing thing I did when my wife was diagnosed nearly 6 years ago. Adopting a local pub (we weren't pub people prior to this) not only kept her engaging with others but saved my sanity - big time!

Now I am on my own, so to speak, I look forward even more now to the weekends - sure it is a bit bitter-sweet, being there without her, but it is helping me to cope.

So whatever interests you (or could be of interest), do try to get involved. We are all here to give our virtual support too, so keep posting.

Kind regards
Phil
 

Grahamstown

Registered User
Jan 12, 2018
1,588
East of England
Adopting a local pub (we weren't pub people prior to this) not only kept her engaging with others but saved my sanity - big time!
This caught my eye because for quite a while our local pub was a haven for us and to entertain our family and friends, because they understood the situation and have been so supportive. The more I tell people about my husband the more support we get from the most unexpected people. Very few have rejected us apart from his sister who has given up all pretence at being a support, which doesn’t affect him any more because he has very little memory. I have been there once or twice without him and the staff unfailingly ask how he is and make me welcome. The family come to visit us and we still go and have a drink and buy take away pizzas but he stays at home with the grandchildren watching TV. It’s the best we can do for him but I know that I could go there without him any time. I have found that openness has been the key for me to have support.
 

kindred

Registered User
Apr 8, 2018
2,338
Dear Dutchman, Your words and thoughts could be mine. My dearest man arrived at his care home on Friday. I feel so lost and broken. I have so much sadness and pain . I cannot put things into words at the moment. I don't think I will ever be able to recover from this.
Marshal, thinking of you with love and all sympathy. Is the care home a loving one? I felt lost and broken too. You obviously love him so much, shines in your words.
Kindred.
 

Dutchman

Registered User
May 26, 2017
500
Devon
My wife’s deteriorating it seems since she’s been in the home. I had this explained to me a little while ago by another forum member but it still upsets me dreadfully. I crave affection from her, just a hug or peck on the cheek would be nice but, of course, she’s past all that now and I go and do what I do out of pure love for her. Her dementia has robbed both of us of any closeness.

Christmas is coming up and I honestly don’t know whether she’s going to make it. For her Christmas was the highlight of her year with all the grandchildren. Now she won’t even know what it means.

It’s no wonder I’m heading for depression and the doctor wants to see me every day now to check up on me. I see no future in anyway shape or form without her.
 

Dutchman

Registered User
May 26, 2017
500
Devon
Just to say you really mustn't feel guilty, you did your absolute best for your wife and she's lucky to have you. But also she's in a safe place now with professional care and you need to now think how to look after yourself. Don't know if it would be of interest but there are groups set up under the umbrella name of MeetUps all over the country (find them with a Google search), walking groups are especially popular, maybe there is some group in your area that might interest you.
Going on Monday next week so I’ll let you know how I get on at a meet-up call Andys cafe
 

Susan11

Registered User
Nov 18, 2018
1,964
Sounds good Dutchman. Worth giving your local meet-up group a go. Have you tried your local church. They might do lunches or afternoon teas in the week usually without any preaching if you're not a believer . I go to my local church twice a week but not to church services as I'm not a believer ... and no one mentions actually going to services ...in fact they don't mention
God at all.