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Dementia’s journey

Jan L

Registered User
Mar 26, 2020
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I’ll tell you one thing in confidence that I feel right now and makes me feel uncomfortable.

I visit Bridget regularly, I love her to bits, I’d care for her till my dying day if I could and give everything we have to have her back with me if God could arrange a miracle or two.

But having lived more or less on my own now for 3 years ( one year at home full on dementia behaviour) I’ve forgotten what our normal life was like. You take that life for granted as part and parcel of day to day living. Bridget is becoming someone I used to know, a life I used to have. And unless you end it all by taking your own life you have no choice but to somehow get on with it, adapt somehow, even attempting a decent dinner for one.

Peterxx
Hi @Dutchman, despite the advanced stage of my Husband's dementia I still have him at home but by keeping him at home I have no life outside of caring for him and running the house. I have someone now come to sit with a couple of hours twice a week while I go out. The freedom is lovely and probably does me good, but I find I am getting behind with things in the house and garden because in essence I really do not have the time to go out. I get very little sleep at night and usually have a nap in the afternoon when he goes to sleep after lunch, this doesn't happen on the days I do go out so when I return and have to get our evening meal I am tired out, I struggle through then when I sit down to have a drink after the meal (I have to sit with him to make sure he drinks otherwise he just leaves it) and I end up going to sleep.

My problem is I can't let go, I would be just like you describe with your Wife. A friend whose Husband went into a Care Home with his Dementia, after a few weeks a lady in the home took a fancy to him and they developed a relationship, she used to sit with him at visiting times holding his hand while my friend visited. I don't know how I would cope if that happened to me, so I struggle on at home.
 

Dutchman

Registered User
May 26, 2017
1,460
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Devon, Totnes
Hello USER=85402]@Jan L[/USER] . First, if you want, please see my posts which go back to 2017.

It’s been 2 years nearly since Bridget went into the home and it’s taken all that time for me rest with a bit with acceptance. I know now she’s in the best place and I’m content knowing I couldn’t manage her the way the staff do.
I’ve had all sorts of upsets along the way and still cry for her and for myself. Like you when she was at home I never slept properly, she was very demanding and aggressive towards the end ( refer to posts around late 2018 and then into 2019).

With regards to friendships - I believe it’s fairly rare that this happens. I thought about this when Bridget went in but mostly the other residential were ( and are) women. I did get upset knowing male staff wash and dress her ( my job) but I didn’t dwell on it as they’re doing a job as professionals.

From your post it seems you’re struggling a lot. Struggle on by all means but there comes a time when enough is enough and physically and mentally you can’t carry on as you are.
The final straw for me was double incontinence, not getting washed or changed for months and wanting to escape the house. I think you’ll know when your final straw is. But the move from house to home is dreadful and there’s no sugar coating that experience. Just make sure you know we’re all here for you
Peterx ❤️🙏
 

Dutchman

Registered User
May 26, 2017
1,460
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73
Devon, Totnes
Hello @Jan L . I also wanted to say make sure you have someone with you on the day your husband does finally move into a home. You need someone to look after you on that day - I didn’t and it would have made all the difference. You’ll be in shock and maybe unable to function properly. Believe me, the perceived relief from the dementia behaviour doesn’t happen on that day and all I wanted was for my Bridget to be back home again.
You need someone who can rationalise all that has happened.
❤️
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I bet you’re all desperate to know how I got on with the kayaking last night😀🛶. Well, i capsized twice, one instructed and one unintentionally. Also aching a lot this morning as unused muscles used. So for me a sit in kayak is not what I want. Too much bother. Going to try a sit on kayak next.

Going to see Bridget today and I’m missing her like mad. When I got home last night I realised that diversions like kayaking only make me feel worse when I’m back home alone. To share adventures is twice the fun and we could talk about it later. We used to do everything together, just ordinary plain camping, walking and talking, just sharing everything with love.
Now I’m forced to face a solitary life. Not much fun talking to yourself or the cat😿.
Peterx❤️
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Why can’t I shake the uneasy feel of guilt off when I do something for myself. It’s like Bridget is looking over my shoulder saying “I’m stuck in this home and you have
freedom”. So it takes the edge off of any enjoyment I might have.

I suppose it’s years of being together never wanting to be selfish or self centred. I’ve always felt I’m going behind her back.

I had to when she was here to arrange help, doctors appointments and finally to arrange for the home placement back in 2019.

This wretchedness never really goes away does it!
 

Andy54

Registered User
Sep 24, 2020
63
0
I think the problem is not actually doing things on your own, it's the not having anyone at home to talk to about it after the event. As well as shared activities, D and I always had our own separate interests as well which we would go off and do either alone or with others, but there was always the sharing the experience by talking about it afterwards. I really miss that.
 

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
I might have mentioned all this before - sorry.

It’s been two years since Bridget went into the home with dementia and now there is no recognition of me as anyone special let alone her husband- that stopped back in 2019. I go because I love her and my bond is still strong and we promised each other always to be there till the end. She’s probably in the middle to later stages of this condition. When I go I help to feed her and hope for some word or two that means something.

I’ve got used to living alone now. I don’t much like it but I have no choice. I feel that it’s all preparing me for that awful day when she dies. Will this long separation and forgetting me lessen the impact of her finally going? Am I somehow fortunate that her death won’t be a total shock? I’ve suffered so much over these past years that I’m afraid to say that I don’t want to go back to total grieving and that nightmare of emotions. Is that unfair to hope for that?

Peter
 

blackmortimer

Registered User
Jan 2, 2021
289
0
I might have mentioned all this before - sorry.

It’s been two years since Bridget went into the home with dementia and now there is no recognition of me as anyone special let alone her husband- that stopped back in 2019. I go because I love her and my bond is still strong and we promised each other always to be there till the end. She’s probably in the middle to later stages of this condition. When I go I help to feed her and hope for some word or two that means something.

I’ve got used to living alone now. I don’t much like it but I have no choice. I feel that it’s all preparing me for that awful day when she dies. Will this long separation and forgetting me lessen the impact of her finally going? Am I somehow fortunate that her death won’t be a total shock? I’ve suffered so much over these past years that I’m afraid to say that I don’t want to go back to total grieving and that nightmare of emotions. Is that unfair to hope for that?

Peter
I understand you, @Dutchman , but feel that you may be overoptimistic thinking that Bridget's death won't be a shock. In a previous existence I had quite a lot of contact with bereaved people and the overwhelming majority seemed to find death, no matter how inevitable and expected, a shock. However, at least those who had had to cope with a lengthy illness or a situation like ours were able to make practical arrangements in advance which often seemed to be something of a comfort.

I've been dwelling on this issue this last week because Margaret has had another chest infection which has necessitated antibiotics and she seems to have been sleeping a lot. It makes me wonder if her general health is deteriorating and that in turn makes me think of the possibility of her dying before me. I play out scenarios in my head but none are at all cheerful. The best I can do is to remember the good times, of which there were many and tell myself that those memories will still be there whatever happens.

God bless
 

kindred

Registered User
Apr 8, 2018
2,754
0
I might have mentioned all this before - sorry.

It’s been two years since Bridget went into the home with dementia and now there is no recognition of me as anyone special let alone her husband- that stopped back in 2019. I go because I love her and my bond is still strong and we promised each other always to be there till the end. She’s probably in the middle to later stages of this condition. When I go I help to feed her and hope for some word or two that means something.

I’ve got used to living alone now. I don’t much like it but I have no choice. I feel that it’s all preparing me for that awful day when she dies. Will this long separation and forgetting me lessen the impact of her finally going? Am I somehow fortunate that her death won’t be a total shock? I’ve suffered so much over these past years that I’m afraid to say that I don’t want to go back to total grieving and that nightmare of emotions. Is that unfair to hope for that?

Peter
Of course it’s not unfair Peter. May I tell you how it was for me? Keith was in the nursing home for two years and deteriorated badly after a fall and a virus. Not covid. Having nursing experience, I knew he was dying, yet my mind kept thinking he might get better even then. When he actually died, I was not shocked, just absolutely exhausted. I was numb for about six months, thought I must have done all my grieving in advance. However, when the memories of the horror of his last months of existence had faded, plus all the harrowing times I had as his sole carer at home, when this has faded, the grief really set in. Currently I am coping, smiling, working, being useful and inside I am wanting to die too.
But I continue to tell myself grief is normal. What else can I do?
with love, kindred
 

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
hello @blackmortimer and @kindred. Thanks for the kind and considerate replies. I’m sure you’re right that when Bridget finally goes it won’t be anything like I imagine. The fact that I can still go and see her, that I have a purpose in caring in some way for her, that she’s still in my life Is a comfort of sorts. I’m still married to her after all.

@blackmortimer , how is Margaret? All the time I get no phone calls from the home I know that Bridget is still ok. When I phone they always say “ yes she’s ok”. I do include you both in my prayers and ask for healing and comfort.
 

Dutchman

Registered User
May 26, 2017
1,460
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73
Devon, Totnes
I don’t know about you but I’m sort of in a vacuum first thing in the morning with neither the will to get up or get on. I suppose it the absence of something to look forward to like we used to when Bridget was ok years ago. We’d plan the day, go to a town, the sea side, see family, or just do nothing much and happy in our company which we both took so much for granted.

I actually went into Exeter yesterday and bought some shoes and visited the Cathedral and generally just looked around. But this is something we’d do together and I miss that - the company.

Thoughts of my future always bother me. Because we were so close and easy with one another I just can’t see how anyone else could fill the space she’s left behind. Not that I want anyone now but i do wonder how I could live with someone else and, of course, them with me. Although I’m getting used to being on my own I wonder could I love another like I’ve loved Bridget?

Its strange when I look back now to the bad dementia days here in our home. I wanted to be on my own, to be free of all the upset and I’d plan in my mind a future away from it all. What a fool I was! I never in a million years anticipated the unhappiness her leaving for a care home would bring me.

So yes @kindred, all this is normal but knowing that is little comfort this morning

God bless. Peterxx
 

Stacey sue

Registered User
Jan 24, 2020
109
0
Hi, I feel very much the same, can’t imagine anyone loving me like he did.I am struggling with the deterioration in my lovely husband, can’t speak,hardly walk,needs help with food?? Although he still knows me (I think) because I am an essential carer and spend so much time with him? Why can’t I get it into my head that he is hardly there. I don’t like this new life, dementia has robbed us of our retirement . I feel guilty when I am not with him helping with all his care , but it is all consuming, feeling a bit down today.
best wishes all.
 

blackmortimer

Registered User
Jan 2, 2021
289
0
hello @blackmortimer and @kindred. Thanks for the kind and considerate replies. I’m sure you’re right that when Bridget finally goes it won’t be anything like I imagine. The fact that I can still go and see her, that I have a purpose in caring in some way for her, that she’s still in my life Is a comfort of sorts. I’m still married to her after all.

@blackmortimer , how is Margaret? All the time I get no phone calls from the home I know that Bridget is still ok. When I phone they always say “ yes she’s ok”. I do include you both in my prayers and ask for healing and comfort.
Thanks for your concern.@dutchman. Margaret seems to be better as far as the chest infection goes but I think maybe deteriorating as far as the general dementia goes. She seems to be sleeping a lot and needing more help with feeding than previously. I fear that she is getting worse but I tell myself that that is only to be expected. Like you I hope not to get any calls from the home because then I know that everything is OK! I sometimes have to steel myself when I ring them because I really don't want to hear any bad news!

Again, thanks for your concern. God bless
 

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
Hi @blackmortimer and @Stacey sue .

I didn’t visit today. I cried off at the last minute. I felt like a coward and that I’d let her down but I’ve been reminded in the past that I’d be no good to her if I go resentfully. She’s so well looked after at the home.

I actually feel a bit under the weather today with a nasty headache that won’t go away. Who looks after me? No cup of tea brought or soothing words. You have to make the best of it on your own.
 

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
Hi, I feel very much the same, can’t imagine anyone loving me like he did.I am struggling with the deterioration in my lovely husband, can’t speak,hardly walk,needs help with food?? Although he still knows me (I think) because I am an essential carer and spend so much time with him? Why can’t I get it into my head that he is hardly there. I don’t like this new life, dementia has robbed us of our retirement . I feel guilty when I am not with him helping with all his care , but it is all consuming, feeling a bit down today.
best wishes all.
Hi @Stacey sue
All you describe today is me also.

I find Sundays particularly difficult. When Bridget was here back in 2018/19 she used to misunderstand the time and get angry at me and throw the Radio Times across the room. Then she’d stomp upstairs at 15.00 and go to bed. I was more or less on my own then as she wasn’t any company. I longed for an easier life.

Now I wonder how to fill my time up. It’s the physical presence of someone I miss. And add that to the worry of knowing she’s got a terminal illness, feeling like you - guilty when I don’t go, then no wonder we’re feeling miserable a lot.

The word loneliness seems to have very negative associations and I certainly never thought I would join the ranks of the lonely. Always thought it was something that happened to others. Just goes to show the fragility of life.
 

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
So I’ve woken to another day. Today I’ll go see Bridget and spend some time there.

It seems to me that as life goes on all around me with people leading their busy lives, then all our misery of loss, loneliness, guilt and grief is something we just need to get on with.

I was reminded yesterday by a counsellor at the Samaritans that I should never underestimate what’s happpening and what has happened to you. You are seeing you wife deteriorating every day and you’re unable to communicate with her and she doesn’t know you anymore. That combination of emotions justifies you being consumed by sadness and grief. No one nor anything can judge you or your feelings. In fact she felt I was doing well. Not that I feel I’m doing well or getting a bit over it.
 

blackmortimer

Registered User
Jan 2, 2021
289
0
Good morning, @Dutchman. I've been thinking about the idea of "getting over it". It seems to be a phrase that's used all too readily and maybe glibly in today's world. Tragedy, unhappiness, grief are things to be gotten over, brushed under the carpet or at least kept out of polite society. I'm not sure it was always so nor that it should be. Granted life must go on but there's a danger that we minimise grief by not talking about it in polite company, putting a brave face on and trying to pretend that everything's back to normal.

I think we should accept grief as a proper human reaction, that we should incorporate it into our lives, give it full rein and acknowledge that things won't go back to whatever was normal before. We must incorporate our grief into ourselves, not try to run away from it, accept that it will always be there but, God willing, will become more and more manageable as time goes by. Also accept that it may never go away and if so, that's fine.

God bless
 

Dutchman

Registered User
May 26, 2017
1,460
0
73
Devon, Totnes
I’d like to recommend a book. It’s the “Languages of Loss” by Sasha Bates. I tend to shy away from peoples life stories of loss but this is an English writer, endorsed by Hugh Bonneville, and has come the closest to what I’m through and her feelings and emotions at the loss of her husband.

Although Bridget’s not dead we all know that dementia, for all attempts and purposes, kills off the person where it’s impossible for me to have a meaningful relationship. I go regularly to see her and we spend time together with me helping her feed, get back her walking abilities and generally fuss over her. But she’ll never remember all of this and the compensation for me is that I feel better for going.

I hope that today won’t be too awful for each of us. I sometimes try to imagine each of us going through the day as best we can carrying the heartache and the sadness and I know I’m not alone. Every emotion I have, every twist of the guts when I see her writing, her picture, the things we bought together, the commonplace memories of a taken for granted finding her in a charity shop, having a favourite tv programme watched together and then talked about, shall I run the hoover round, do the sheets need changing and all those thousands of small decisions that don’t really matter but matter so much now.

I live in a really lovely home. But it’s becoming more me now and the essence of Bridget is diminishing. So I seldom touch her stuff. There’s no one else here that moves anything.

Peterx
 

big l

Registered User
Aug 15, 2015
90
0
Oh Dutchman it really isn't getting any better is it, rather the opposite? I am very similar to you in that I live in the land of 'what should have been'. I cherish memorabilia etc. remember happier days, and wander around in the land of 'if only....' So? My husband is safely at home with me so it is much, much easier for me I know (!) - but the point of my writing this is that I too have counselling. After years (since the very beginning) of supporting me and listening, listening, listening to the same anguish week after week after week, she, (presumably) plucked up the courage to tell me to look at how it really is. So if it helps , I'll share it. She told me to consider whether I was actively seeking 'sorrow,' was I indulging in being sad and actively seeking out reasons to feel sad? Was I punishing myself for something I had no control over and - basically, could I be indulging in grief in order to avoid facing up to the reality that neither I, nor anybody else, can cure this dreadful disease. Was I actively denying myself any pleasure? (self delegated penance) She pointed out that I deserved better for myself from myself. Bridget is as happy as it's possible to be and she's SAFE. Now you have to look out for you. May I very respectfully suggest you read back over your posts since Bridget went in to the care home and see if you can see a thread of self persecution in them? Then you can tell yourself clearly and firmly that you're not allowed to ignore your need for the relief from guilt and grief.
 

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