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Dementia’s journey

Dutchman

Registered User
May 26, 2017
524
Devon
Thank you so much Geraldine.
The happiest new year we can make to all my dear friends on the forum
Went to the doctor today who is so kind and understanding. Fresh meds but more than that some reassurance that I’m doing ok and as Bridget won’t remember me coming yesterday (she really won’t ) I can not feel so guilty about not going. I’ve come to the conclusion that if I’m more accepting of the positive things I’ve done and am doing now perhaps I’ll feel more settled.

Anyway that’s the theory, just got to move it from head to heart. Bless you all.
 

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Pampas80

New member
Sep 29, 2017
6
Definitely! You are an inspiration for keeping on in the face of your grief. I read your thread and I am amazed by your resilience to keep going and hope you see your way through to calmer waters without constantly picking at the sore of your ‘lost’ wife. On reflection perhaps you need that at the moment, you suffering too in sympathy with her. But I hope you can find some tranquil moments in some way.
Thanks to all my understanding friends on the forum. Bless you.

Bit better now but I will be visiting this afternoon. Another dose of a sinking heart, sadness and helplessness. Sometimes I wonder if I’ve progressed at all with handling my grief. One step forward two back it seems.

I fully understand that urgent need to have some affection, any affection while we can. When my wife smiles it lifts my day.

Keep posting and perhaps we can get through this together.
Thanks to all my understanding friends on the forum. Bless you.

Bit better now but I will be visiting this afternoon. Another dose of a sinking heart, sadness and helplessness. Sometimes I wonder if I’ve progressed at all with handling my grief. One step forward two back it seems.

I fully understand that urgent need to have some affection, any affection while we can. When my wife smiles it lifts my day.

Keep posting and perhaps we can get through this together.
I’ve read
 

Dutchman

Registered User
May 26, 2017
524
Devon
The happiest new year we can make to all my dear friends on the forum
Went to the doctor today who is so kind and understanding. Fresh meds but more than that some reassurance that I’m doing ok and as Bridget won’t remember me coming yesterday (she really won’t ) I can not feel so guilty about not going. I’ve come to the conclusion that if I’m more accepting of the positive things I’ve done and am doing now perhaps I’ll feel more settled.

Anyway that’s the theory, just got to move it from head to heart. Bless you all.
I’ve said before that I care little about myself in this Dementia situation and worry all the time about Bridget and if she is suffering at the home. The carers always say that she’s ok when I phone. I want so much to look after her myself but practically I can’t.

I’m told all the time by doctors and the home staff that she probably doesn’t remember you visiting and she certainly doesn’t recognise me as her husband anymore. However, does anyone really know if , at this stage of her vascular dementia, she is capable of emotional suffering, does she realise that she’s not well.

As far as I can tell she’s not in pain but it would be a comfort to me to know that she’s not in distress. I feel so sorry for her and wish I could do more because I always think I’m not doing enough. The doctor has advised that it could take at least 12 months before I really turn a corner with this worry and not feel so sensitive. One day at a time is my maximum at the moment.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,651
Kent
Do you ever observe your wife when she is unaware you are there @Dutchman?

I used to visit at different times of the day and observe my husband before he knew I was there and after the visit when he thought I had gone.

There was never a time when he seemed to be distressed and it was a great comfort to me.
 

northumbrian_k

Registered User
Mar 2, 2017
966
Newcastle
I have developed good relationships with all the staff at my wife's care home and they tell me as soon as I arrive how she has been, what her current mood is and so on. I have seen her engaged in activities, looked at photographs of her joining in and noted how she interacts with staff and other residents. She is confused, has ups and downs of mood but not anything that could be called 'distress' over a shorter or more prolonged period. I trust the staff to keep me informed of anything that is worthy of note. Perhaps talking to the staff at your wife's home as well as following Grannie G's advice may give you the reassurance you need.
 

Wifenotcarer

Registered User
Mar 11, 2018
275
Central Scotland
Daughter picked up OH from the Care Home and brought him here for a couple of hours on Christmas Day morning. It was lovely to see him sitting in his usual place surround by the family. Eventually he started to nod off and was perfectly compliant when Daughter said it was time to leave and took him back to Care Home for Christmas Lunch there. I could not believe how easy it was.
Nonetheless, having managed to cope with Christmas and New Year, I am now plunged into gloom, hibernating in the house, full of dread for what 2020 will bring. I try to remind myself that I have always suffered from depression at this time of year and that this too will pass. As the days lengthen I will feel better and having tried it successfully once, will have another go at bringing OH 'home' for a short while. The key seemed to be that someone other than me brought OH for a VISIT and then took him back when she was leaving too.

Not sure that my story will be of any help to you Peter, just to say that things change, hopefully for the better, (eg, last Christmas was a nightmare for the whole family) and you have to go with the flow.
 

Dutchman

Registered User
May 26, 2017
524
Devon
following Grannie G's advice may give you the reassurance you need.
Daughter picked up OH from the Care Home and brought him here for a couple of hours on Christmas Day morning. It was lovely to see him sitting in his usual place surround by the family. Eventually he started to nod off and was perfectly compliant when Daughter said it was time to leave and took him back to Care Home for Christmas Lunch there. I could not believe how easy it was.
Nonetheless, having managed to cope with Christmas and New Year, I am now plunged into gloom, hibernating in the house, full of dread for what 2020 will bring. I try to remind myself that I have always suffered from depression at this time of year and that this too will pass. As the days lengthen I will feel better and having tried it successfully once, will have another go at bringing OH 'home' for a short while. The key seemed to be that someone other than me brought OH for a VISIT and then took him back when she was leaving too.

Not sure that my story will be of any help to you Peter, just to say that things change, hopefully for the better, (eg, last Christmas was a nightmare for the whole family) and you have to go with the flow.
Well done for the courage to make the decision to bring OH home and really glad it turned out ok. My problem is that I’m not at all sure how my wife would react to bringing her back home. It could go either way of course but it could turn out to be disastrous and what do I do then. Of course if I was surrounded by family that would help but would she then feel the need even stronger to remain at home and not go back to the care home? Who knows and I feel a coward for not feeling up to taking a chance.

This constant nightmare of these types of decisions, coupled with the fact that my wife mentions ‘home’ each time I visit, leaves me emotionally exhausted. I too dread 2020 and if there was an answer to finding some peace I’d take it but there doesn’t seem to be anything and lots of us are hanging onto our sanity by our fingertips.

I’m getting to the point where, I’m ashamed to say, going to the care home, even every other day, is becoming a chore, a job to be done. Sometimes she’s affectionate in small ways which leaves me wanting more or she’s just vacant. Trying to make sense of all this is an impossible task. Perhaps that’s something I need to accept.
 

Dutchman

Registered User
May 26, 2017
524
Devon
Has anyone got advice about something quite basic, to do with keeping my wife clean.
When I have the chance at he home I get her ready for bed, put on her pyjamas and put on clean pull up Tena pants. Today her pants were soiled and just before putting fresh ones on I wipe her bottom with a warm wet flannel to make sure she’s as clean as possible. She moans when I do this as she doesn’t like the wetness or probably the act of me doing this or both.

Any tips to make this a more acceptable for her because on balance being clean is most important.
 

Dutchman

Registered User
May 26, 2017
524
Devon
Daughter picked up OH from the Care Home and brought him here for a couple of hours on Christmas Day morning. It was lovely to see him sitting in his usual place surround by the family. Eventually he started to nod off and was perfectly compliant when Daughter said it was time to leave and took him back to Care Home for Christmas Lunch there. I could not believe how easy it was.
Nonetheless, having managed to cope with Christmas and New Year, I am now plunged into gloom, hibernating in the house, full of dread for what 2020 will bring. I try to remind myself that I have always suffered from depression at this time of year and that this too will pass. As the days lengthen I will feel better and having tried it successfully once, will have another go at bringing OH 'home' for a short while. The key seemed to be that someone other than me brought OH for a VISIT and then took him back when she was leaving too.

Not sure that my story will be of any help to you Peter, just to say that things change, hopefully for the better, (eg, last Christmas was a nightmare for the whole family) and you have to go with the flow.
Hi there again

I’m living a life which worries me tremendously. Getting up in the morning is the hardest thing and I’ve gone back to bed 10.20am after making myself a cup of tea. Is this weird behaviour, is it harmful? I know advice is to get out there, enjoy the day but I’ve no motivation to do anything apart from lie in this warm bed and read/ sleep.

My doctor reminded me that my grief in my wife having dementia and having to leave our house has made me ill with depression and do not underestimate the effect it has on me. Oh how I wish I had more get up and go.
 
Last edited by a moderator:

Louise7

Registered User
Mar 25, 2016
1,777
Has anyone got advice about something quite basic, to do with keeping my wife clean.
When I have the chance at he home I get her ready for bed, put on her pyjamas and put on clean pull up Tena pants. Today her pants were soiled and just before putting fresh ones on I wipe her bottom with a warm wet flannel to make sure she’s as clean as possible. She moans when I do this as she doesn’t like the wetness or probably the act of me doing this or both.

Any tips to make this a more acceptable for her because on balance being clean is most important.
In my Mum's home they use dry wipes then a barrier cream, rather than a flannel and water as it is better for her skin. Perhaps speak to the carers at your wife's home to see what they recommend?
 

Dutchman

Registered User
May 26, 2017
524
Devon
In my Mum's home they use dry wipes then a barrier cream, rather than a flannel and water as it is better for her skin. Perhaps speak to the carers at your wife's home to see what they recommend?
Thanks for the advice. Problem is that while I’m trying to do this task she’s constantly moving so sometimes a quick wipe is all I can manage. I’ll speak to the home as you suggest.
 

Baggybreeks

Registered User
Mar 22, 2017
78
Scotland
Hi there again

I’m living a life which worries me tremendously. Getting up in the morning is the hardest thing and I’ve gone back to bed 10.20am after making myself a cup of tea. Is this weird behaviour, is it harmful? I know advice is to get out there, enjoy the day but I’ve no motivation to do anything apart from lie in this warm bed and read/ sleep.

My doctor reminded me that my grief in my wife having dementia and having to leave our house has made me ill with depression and do not underestimate the effect it has on me. Oh how I wish I had more get up and go.
Yes , I am experiencing this empty feeling after my husband died a year ago.
He was in a Care home for 3 years after 3 years of gradual dementia decline. Full on caring. Relief but difficult to see him disappear.
I visited every afternoon as I still loved him and knew his time was coming.
However, I find it so hard to get motivated to do anything now.
I have had bereavement counselling, where someone sits and listens.
But no matter what I do, there is still this big empty hole, after 50 years of marriage.
I do think what is the point of going on.
So I struggle on.
Friends from before seem to have evaporated. They couldn’t cope with my husband ‘s dementia or his death. Very few offers of support now.
So getting out of bed is not easy and I just feel like shutting myself in, like you.
Hopefully this will be better in the spring?
 

Jaded'n'faded

Registered User
Jan 23, 2019
659
High Peak
Hi @Dutchman and @Baggybreeks - I hope each of you are having a 'somewhat' better day today. I note you have each had some counselling which I am sure will help, but no amount of counselling is going to make you smile again.

I know I've said this before (and Dutchman has given it a try but it didn't work out!) but maybe consider a pet? I lost my mum at the end of October and I'm getting a new kitten in a few weeks - the little sister of the two cats I have now. Nothing is better than kitten (or doggie!) therapy! There isn't anything else in the world that can put as many smiles in your day as a kitten.

You can't change your current situations or how you feel about it right now but maybe umpteen smiles a day would help? Here is Minky Mooncat - I can't wait to collect her and hope her pic gives you a smile today...
599826783.jpg
 

Lirene

Registered User
Sep 15, 2019
170
Beautiful, innocent and looking fir someone to love. I have to admit that caring for and speaking to your pet is super therapeutic. Having another ‘being’ who relies on you totally for all their affection and love is a wonderful thing. To be greeted on your return, however short your time away, this animal loves you and shows it in so many ways. Take a dog for a walk, someone always speaks, get to know fellow dog walkers and it’s amazing what secrets they share. I don’t know their names but we’ve hugged and cried at their news just lately. For me, well I prefer to fight my own demons but hope to think I help someone in their own hellish struggle with what this tough world throws at us. Love and prayers for you all xx
 

Baggybreeks

Registered User
Mar 22, 2017
78
Scotland
Thanks Jaded’n’faded, and Lorene, it’s a beautiful little cat, but unfortunately I am allergic to cats! And I have moved to a new flat 3 floors up , although a dog is allowed, it would be very difficult to manage walkies.
Today is another slow morning, strong winds and rain, so I will stay in.
I was putting away the few Christmas decorations yesterday and looking at the cards I had received. There are still old friends who don’t know that my husband died last January so I will have to write the painful news to let them know.
I still can’t believe he’s gone after the awful struggle with dementia robbing his mind and body. It is such an awful disease and unless you have had to the experience it is difficult for people to understand how it wrecks your life as well as the dementia sufferer.
I think the apathy and lack of energy now is a reflection of how hard it is to be a dementia carer.
But for the moment I go on without the love and company I had in our marriage. Trying to find my way to get through this grief.
Yes, a cat would have been good, though not the same as a person.
 

Dutchman

Registered User
May 26, 2017
524
Devon
Yes , I am experiencing this empty feeling after my husband died a year ago.
He was in a Care home for 3 years after 3 years of gradual dementia decline. Full on caring. Relief but difficult to see him disappear.
I visited every afternoon as I still loved him and knew his time was coming.
However, I find it so hard to get motivated to do anything now.
I have had bereavement counselling, where someone sits and listens.
But no matter what I do, there is still this big empty hole, after 50 years of marriage.
I do think what is the point of going on.
So I struggle on.
Friends from before seem to have evaporated. They couldn’t cope with my husband ‘s dementia or his death. Very few offers of support now.
So getting out of bed is not easy and I just feel like shutting myself in, like you.
Hopefully this will be better in the spring?
Although my Bridget is still alive she’s just a shell of what she was and evil dementia has robbed us both of what could have been

Again I’ve not gone to see her at the home so that’s two days running now and can’t help feeling I’m letting her down. They say she wouldn’t remember anyway but I feel lazy and neglectful but going for me is so emotional and I take the easy path and don’t go. I’ll go tomorrow, promise, and do my best to be cheerful.

Sometimes I feel hopeless and guilty because I’m going back to bed at any time of day because it’s easy when my day is empty, very sad because I’m doing stuff without her, and scared stiff at the prospect of life without her and on my own.

I try to imagine what my life will be like when she eventually goes. If it’s rough now It’ll be so much worse that I’ll really see no reason to go on. So like you there’s this big empty hole where her physical presence used to be.
Time heals they say but how’s that work when every day is a struggle.

You can take pills, do counselling, meet-up with kind friends, go to a movie, etc but when you’ve lost the one that meant everything to you there’s really nothing to calm your grief but just getting on with it and hope life will somehow get better.

Joined in grief, thinking of you, Peter
 

Dutchman

Registered User
May 26, 2017
524
Devon
Went the home today and found Bridget in her room with a carer eating cake. This is new. When I opened the door and she saw me she she smiled and said how wonderful. I changed her for bed but she’s showing signs of not wanting to be with other people, to remain in her room. She even said it was nice when sat on the bed together. We eventually went down to the lounge .

You may say that it’s great that she still show such emotions towards me but it messes with my mind when before she showed more reluctance towards me. I couldn’t bear the thought of her really wanting me there and then when I’m not there her being unhappy.

Complex doesn’t even come near.
 

kindred

Registered User
Apr 8, 2018
2,360
Went the home today and found Bridget in her room with a carer eating cake. This is new. When I opened the door and she saw me she she smiled and said how wonderful. I changed her for bed but she’s showing signs of not wanting to be with other people, to remain in her room. She even said it was nice when sat on the bed together. We eventually went down to the lounge .

You may say that it’s great that she still show such emotions towards me but it messes with my mind when before she showed more reluctance towards me. I couldn’t bear the thought of her really wanting me there and then when I’m not there her being unhappy.

Complex doesn’t even come near.
Peter, your mind is constantly searching for thoughts to torment yourself with. This is normal after shock and in grief but knowing that does not really help. It's all about finding ways to endure this, and I promise you it does lessen. All my fellow feeling. Geraldinex
 

Jaded'n'faded

Registered User
Jan 23, 2019
659
High Peak
Went the home today and found Bridget in her room with a carer eating cake. This is new. When I opened the door and she saw me she she smiled and said how wonderful. I changed her for bed but she’s showing signs of not wanting to be with other people, to remain in her room. She even said it was nice when sat on the bed together. We eventually went down to the lounge .

You may say that it’s great that she still show such emotions towards me but it messes with my mind when before she showed more reluctance towards me. I couldn’t bear the thought of her really wanting me there and then when I’m not there her being unhappy.

Complex doesn’t even come near.
Don't forget also that you are trying to apply logic and reason to her behaviour. There is no logic with dementia though there are certainly good days and bad days.

And yes, it does make you realise (not in a good way) how incredibly complex the brain is.
 

Dutchman

Registered User
May 26, 2017
524
Devon
I’ve got a cold so haven’t been in to see Bridget although I did just drop off some stuff at the door to the carers
And because of my cold and of germ spreading I feel a liberated that I have a genuine excuse not to go there.

she seems to be staying in her room more and I wonder if this represents a decline in her condition
I need a companion as I’m lonely and it’s getting nearer to the point where I’ll look around for a pet
 

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