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Dementia’s journey

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
My life has had to adjust to being alone. I don’t have a choice. I go to see Bridget every other day and try to build into my week things to do that get me through without to much heartache.

I guess the reason we’re not really responding to each other on our Forum as much is that there is little to say. I’ve been posting on here since 2017 and been through all the emotions save one, the last one, when Bridget dies. That’s going to be the test of my resilience. Will this lasting loneliness prepare me - who knows. Every day throws up a feeling of guilt and loss and every time I visit I feel the pain of separation.

All I know is that everyone I’ve talked to here probably feels equally that our grief is just about managed, that we lurch from one emotion to another. C S Lewis described his grief after losing his wife as something he carried around, visible to others so they avoided him and he felt he and fellow sufferers might be locked away, like in a colony, away from infecting others.

I sometimes feel that infection and the avoidance and awkward when in company. People just don’t know what to do or say or what they do say is totally inappropriate. Would I be any different? Not sure.
 

lollyc

Registered User
Sep 9, 2020
774
0
I sometimes feel that infection and the avoidance and awkward when in company. People just don’t know what to do or say or what they do say is totally inappropriate. Would I be any different? Not sure.

I suspect @Dutchman that they are damned if they do, and damned if they don't. They don't ask, for fear of causing you more upset. If they do ask, you probably tell them they don't understand. We all do it, and yes, you would probably do the same if the positions were reversed.

I really do think that most people are only trying to be kind and considerate - even though it may not seem like it. When they suggest joining a club, or whatever, it is because they can see how lonely and miserable you are, not to make light of your feelings.

I'm afraid I'm going to upset you now: You say you have no choice but to be lonely. Actually you have the choice: to go out and meet people, take part in something, take up a new hobby etc., etc. and enjoy the company of others. None of this would be to the detriment of your relationship with Bridget. Unfortunately, just like many of us here, however much you know this is true, taking that action is very hard.

Dementia is taking our PWD. We can't stop it, we have no control over it, and it is hell. But dementia is greedy, and will take our lives too, if we let it.
We can chose to be dragged down by it, or we can stick two fingers up to it, and move forward, when we are allowed.

Please don't try to pre-empt how you will feel when Bridget is no longer here. We all speculate, but until that time comes we won't know. All it does is heap more misery upon us. Many have posted on here abut how their lives have moved in a positive, and completely unexpected direction.

Being alone, and being lonely are two very different things. Your future may, or may not, be alone, but it doesn't necessarily mean it will be lonely.
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
My life has had to adjust to being alone. I don’t have a choice. I go to see Bridget every other day and try to build into my week things to do that get me through without to much heartache.

I guess the reason we’re not really responding to each other on our Forum as much is that there is little to say. I’ve been posting on here since 2017 and been through all the emotions save one, the last one, when Bridget dies. That’s going to be the test of my resilience. Will this lasting loneliness prepare me - who knows. Every day throws up a feeling of guilt and loss and every time I visit I feel the pain of separation.

All I know is that everyone I’ve talked to here probably feels equally that our grief is just about managed, that we lurch from one emotion to another. C S Lewis described his grief after losing his wife as something he carried around, visible to others so they avoided him and he felt he and fellow sufferers might be locked away, like in a colony, away from infecting others.

I sometimes feel that infection and the avoidance and awkward when in company. People just don’t know what to do or say or what they do say is totally inappropriate. Would I be any different? Not sure
I suspect @Dutchman that they are damned if they do, and damned if they don't. They don't ask, for fear of causing you more upset. If they do ask, you probably tell them they don't understand. We all do it, and yes, you would probably do the same if the positions were reversed.

I really do think that most people are only trying to be kind and considerate - even though it may not seem like it. When they suggest joining a club, or whatever, it is because they can see how lonely and miserable you are, not to make light of your feelings.

I'm afraid I'm going to upset you now: You say you have no choice but to be lonely. Actually you have the choice: to go out and meet people, take part in something, take up a new hobby etc., etc. and enjoy the company of others. None of this would be to the detriment of your relationship with Bridget. Unfortunately, just like many of us here, however much you know this is true, taking that action is very hard.

Dementia is taking our PWD. We can't stop it, we have no control over it, and it is hell. But dementia is greedy, and will take our lives too, if we let it.
We can chose to be dragged down by it, or we can stick two fingers up to it, and move forward, when we are allowed.

Please don't try to pre-empt how you will feel when Bridget is no longer here. We all speculate, but until that time comes we won't know. All it does is heap more misery upon us. Many have posted on here abut how their lives have moved in a positive, and completely unexpected direction.

Being alone, and being lonely are two very different things. Your future may, or may not, be alone, but it doesn't necessarily mean it will be lonely.
thank you @lollyc for, as always, those reasoned words. A lot of my comfort comes from a comparison of what life was like in the early days when she went into the home and now. I don’t cry every day. I don’t feel miserable all the time. I don’t have a need to talk to Admiral Nurses or the Samaritans every week, although I talk to my counsellor every 3 weeks.

Now I can manage days with interest. I get choked up when I see her picture, her writing, her voice on my recordings, of course I do, but it’s not all day. So that’s 2 years now. Who knows what another year will bring?

Once again thanks for the pep talk. I need telling sometimes how it is.
Peterx
 

big l

Registered User
Aug 15, 2015
96
0
My life has had to adjust to being alone. I don’t have a choice. I go to see Bridget every other day and try to build into my week things to do that get me through without to much heartache.

I guess the reason we’re not really responding to each other on our Forum as much is that there is little to say. I’ve been posting on here since 2017 and been through all the emotions save one, the last one, when Bridget dies. That’s going to be the test of my resilience. Will this lasting loneliness prepare me - who knows. Every day throws up a feeling of guilt and loss and every time I visit I feel the pain of separation.

All I know is that everyone I’ve talked to here probably feels equally that our grief is just about managed, that we lurch from one emotion to another. C S Lewis described his grief after losing his wife as something he carried around, visible to others so they avoided him and he felt he and fellow sufferers might be locked away, like in a colony, away from infecting others.

I sometimes feel that infection and the avoidance and awkward when in company. People just don’t know what to do or say or what they do say is totally inappropriate. Would I be any different? Not sure

thank you @lollyc for, as always, those reasoned words. A lot of my comfort comes from a comparison of what life was like in the early days when she went into the home and now. I don’t cry every day. I don’t feel miserable all the time. I don’t have a need to talk to Admiral Nurses or the Samaritans every week, although I talk to my counsellor every 3 weeks.

Now I can manage days with interest. I get choked up when I see her picture, her writing, her voice on my recordings, of course I do, but it’s not all day. So that’s 2 years now. Who knows what another year will bring?

Once again thanks for the pep talk. I need telling sometimes how it is.
Peterx
Dear Dutchman, another comment, another, new, concerned person taken aback by your posts in which you present as a lost soul searching for redemption. Dutchman, your world has been up-ended by dementia, but your beloved Bridget is as safe and contented as someone with dementia can be. The counsellor and the cat haven't been in your posts for a while, have you stopped seeing them as a means of comfort and support? When you were commiserating with others that had lost their dementia tortured partners, you could offer them sympathy and support, as I have tried to say to you before in all manner of different ways, can you not award yourself some relief from investing and enveloping yourself in increasingly intense, overwhelming, unbearable grief, and give it a real go at allowing yourself some simple pleasure?
 

big l

Registered User
Aug 15, 2015
96
0
Hello @big l . Your post deserves more time than I can give it right now. Will post again soon
Peter
I've followed you for a long time Peter, if I could give you one gift it would be peace for your mind, acceptance is a step that none of us can ever take. I know that.
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
Hello @big l . Your post deserves more time than I can give it right now. Will post again soon
Peter
Hi there @big l . You’re right of course that I do deserve simple pleasures and I know that Bridget is well looked after, much better than I could ever do on my own, even with the help of visiting carers. She’s seems happy and I’ve been told by staff that they would know if she was anxious or worried. So I have to believe that .

I suppose it’s the ever present misery of loss that affects me so much. I do have the cat as company and I speak with my counsellor once a month and I have a few hobbies and interests. That’s something. But realistically I miss her desperately and everything I do is tainted by our separation.

I find it difficult to describe how I feel sometimes but it’s like an inability to settle. When I’m with her there’s the tiniest moments between knowing she’s in the right place and desperately wanting her back home with me.

Peace of mind. Ah, wouldn’t that be nice. Thank you for supporting me. Means a lot.
 

Andy54

Registered User
Sep 24, 2020
157
0
@Dutchman, I know what you mean when you say it's like an inability to settle, in some ways I feel like I'm living in some sort of temporary arrangement like everything is on hold awaiting Deb's return, I know it's not going to happen but it still doesn't quite feel real. The enforced solitude I can get used to but I can't let go of the longing for times past and the fact that those shared moments will never happen again. I found myself thinking about the passage of time today, Deb has been in care for six months and realistically it has been more than two years since the last little bits of the old pre-dementia Deb started to disappear yet in some ways it feels like just a few weeks since we had our old life together. It seems like time as well as emotions get distorted by this situation.
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
Hi @Andy54

It’s so easy to imagine the old pre dementia life taken up again isn’t it. To be able go back and be a normal couple again and not to be lonely surrounded by all the memories.

I look at Bridget when we’re together sharing her meal and looking at her living in the home and it’s sometimes impossible to remember what it was like just living together, doing stuff on a daily basis. We never had what you’d call an exciting life ( who does anyway) but we enjoyed just being together and that was enough.

Two years on my own now and it’s still unusual. Does it ever get pass the point of excepting, I doubt it? I believe I was made for being part of a couple. Altogether 31 years of marriage so I’m hard wired.
God bless. Peter
 

update2020

Registered User
Jan 2, 2020
163
0
I now look at your posts on here @Dutchman and read them in a different way. I am two different people. There is the public me who gets on with things, tries to make new friends, start new hobbies, adopts a puppy, works (part-time) and generally tries to survive and keep sane. Then there is the private bit of me that reads and sympathises with your posts and makes my own posts occationally. A life in figures: age 64, 40 years married, 16 years of living with my husband's young onset dementia (including the last two of him living in hospital -which was horrific -and now in care). That leaves a darkness at the heart of me. Every so often I need to let some darkness out in order to carry on. That is when I post on here. It is therapeutic. I suspect that you are similar but not (of course) the same. So I am more than happy for you to go on posting about the dark side if I know that you are kayaking, talking to your cat and your counsellor too. One other thing I do - I try to make my living environment my own and not the family's or ours as a couple (though we had little couple time, childcare and husbandcare overlapped) - downsizing and reducing the memorabilia to a small space where I do not encounter them all the time.
 

Andy54

Registered User
Sep 24, 2020
157
0
@update2020, Interesting what you said about letting the darkness out, that inner darkness is something that I think all of us here probably have and if we didn't find an outlet for it we would be in danger of it enveloping us. I suppose sometimes we let it out without even realising that is what we are doing. I don't think I'm quite brave enough to consider adjusting my home environment although thought has crossed my mind - maybe something for the future perhaps.
 

update2020

Registered User
Jan 2, 2020
163
0
@update2020, Interesting what you said about letting the darkness out, that inner darkness is something that I think all of us here probably have and if we didn't find an outlet for it we would be in danger of it enveloping us. I suppose sometimes we let it out without even realising that is what we are doing. I don't think I'm quite brave enough to consider adjusting my home environment although thought has crossed my mind - maybe something for the future perhaps.
Thank you, @Andy54 . I was kick-started into changing my home when my husband's dementia grew so advanced that I had to simplify his environment to keep him safe. He would eat all kinds of things. The day I found him eating a bright blue candle was a turning point. And so I got rid, temporarily or permanently, of lots of stuff). We even moved to a smaller house with no carpets etc. Since he. has moved into care I have got rid of all the apparatus I used to care for him and have gradually started putting back in things that I have chosen to make the place feel more furnished again - but my choice this time. There is no way I could, or would want to, reconstruct the family home we had years ago. The hardest thing, though, was getting rid of the clothes that he can no longer use. I gave them to charity and just told myself that I would enjoy buying new if he ever did need them again. I hope somebody else is now benefitting from some of them (like the office clothes I mistakenly bought early on -before we knew it was alzheimers - in the hope he might one day go back to work - they were never worn) .
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
Hi @Andy54 @update2020 @big l . Damn it’s so hard to get motivated this morning. It’s difficult when there’s no one saying come on let’s do this or that, why don’t we do this? So I lie in bed.

I’ve got rid of some of her clothes because, like you @update2020, decided that she’s not going to wear them ( she’s lost weight and no longer a 16) and will buy a whole new wardrobe if needs be.

My daughter made the journey down and we visited yesterday and it went well and I was reassured by the staff that once we had gone they would look after her. I always find leaving difficult.

What I’m still finding infuriating and preys on my mind is the attitude of her brother and son. Neither want to visit her and if we continue like this won’t be near her till the funeral and she’s buried. Now’s the time to come while she’s still responding to people. I’m told not to waste energy thinking of this but I can’t help it. I just don’t understand.
Peter
 

canary

Registered User
Feb 25, 2014
18,123
0
South coast
Some people are just like that, Peter. My brother never went near my mum in her last three years. He visited once, when she first moved into her care home and didnt see her again - even when I contacted him and told him that she was at End of Life. He came to the funeral, and that was that. He said he found it too upsetting to see her in her care home, but it was his loss.
 

Violet Jane

Registered User
Aug 23, 2021
772
0
Reading your posts, Peter, the expression 'it's the hope that kills you' comes to mind. In your case, you are hoping for a glimpse of the old Bridget, some recognition of you as her husband, some memory of your life together, some affection towards you but these hopes are frequently dashed and you are left disappointed. You feel some dread before your visits because you fear that you are going to leave disappointed but you know that if you don't visit there is no hope of those things.

As for your brother-in-law and nephew, I'm afraid that it's far from uncommon for friends and relatives not to want to visit a person once his/her dementia is fairly advanced so they are not unusual. From what you've said, I think that it's unlikely that Bridget would show any recognition of them anyway. Most people are horrified by dementia and would prefer not to be confronted with it so they don't visit. They are even less likely to visit once the person is living in a residential home as, of course, there are lots of people with dementia there. My brother lived 7 minutes drive away from my mother's care home but, as far as I can tell, never visited unless I went with him. My sister lived abroad and, as far as I can remember, did not see my mother in the last 4 years of her life. That might not have been unreasonable but she could have sent the odd postcard to the home which I could have talked to my mother about.

Don't waste your energy on resenting your brother-in-law and nephew for not visiting. It won't achieve anything. If they don't want to visit they won't.
 

Clarinda3

Registered User
Apr 29, 2021
33
0
My life has had to adjust to being alone. I don’t have a choice. I go to see Bridget every other day and try to build into my week things to do that get me through without to much heartache.

I guess the reason we’re not really responding to each other on our Forum as much is that there is little to say. I’ve been posting on here since 2017 and been through all the emotions save one, the last one, when Bridget dies. That’s going to be the test of my resilience. Will this lasting loneliness prepare me - who knows. Every day throws up a feeling of guilt and loss and every time I visit I feel the pain of separation.

All I know is that everyone I’ve talked to here probably feels equally that our grief is just about managed, that we lurch from one emotion to another. C S Lewis described his grief after losing his wife as something he carried around, visible to others so they avoided him and he felt he and fellow sufferers might be locked away, like in a colony, away from infecting others.

I sometimes feel that infection and the avoidance and awkward when in company. People just don’t know what to do or say or what they do say is totally inappropriate. Would I be any different? Not sure.
 

Clarinda3

Registered User
Apr 29, 2021
33
0
@Dutchman your comment about C S Lewis resonates with me. Thank you for sharing. The thought that I am seen as a leper by some people has been swirling around in my head lately. I understand that in the beginning my pain and emotions were so raw that it may have been difficult for people to be around me. It is so disheartening that some people we were close to, people I considered family, have not asked me how my OH is or how I am. His name is not mentioned and I feel like screaming ‘he is still a person, he is still here, please ask about him’. I understand that they are unable to go there but it still hurts. And I can’t help changing how I feel about them now. I know that I need to let it go but that’s not easy. I am very grateful for the wonderful kind souls that have taken me under their wings. Friends who have been through painful times are not afraid to go there. I am getting better at reaching out myself too, to family and friends. I am gaining more courage and thinking of ways I can encourage people to mention the unmentionable going forward. I have stayed away from occasions because I couldn’t bear the elephant in the room and thought it would be easier for everyone if I just stayed away. But I’m not willing to do that forever.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,070
0
High Peak
I get why some relatives can't/won't visit - let's be honest, visiting someone with dementia is not easy. I always found it really difficult to visit my mum.... but I still did it.

I think the worst part is that these same relatives do nothing else either. If you just can't cope with visiting, it doesn't stop you phoning, sending cards, letters, small gifts, etc. It doesn't stop you supporting the carer and being there for them. But that's what seems to happen. Then you're stuck with the resentment towards them.

It's not worth it. Their behaviour tells you exactly how things are and they don't change. They would rather hide from you too than admit their own failings.
 

Violet Jane

Registered User
Aug 23, 2021
772
0
I found it extremely difficult to visit my mother in her care home. I had to psych myself up for each visit and, I’ll be honest, if I could find an excuse I didn’t go. For some time I felt a sense of shock when I walked into the home and saw my mother there. It was like a knife to the heart. But, I did still go regularly, for the 4 years she was there.

I think that my brother visited my mother once on his own when she was EoL. His wife (who hadn’t been married to my brother for very long) told me that she had urged him to go. To be fair to my brother, he did a lot on the practical side; he managed my mother’s financial affairs and dealt with everything to do with letting the house, which I’m grateful to him for. I just wish that I’d known that he wouldn’t be visiting (and neither would my mother’s friends) and that I’d chosen a home nearer to me. My brother would probably have vetoed this though on the grounds of cost (I live in London and my mother was living in north Hertfordshire).

As Jaded said, it’s very little effort to send a few cards and gifts and make a few phone calls. Why don’t these people do that? The reasons probably vary. Some are utterly lazy and selfish. Some think that it’s not worthwhile because the PWD won’t know or remember. Some would prefer to forget that the PWD is still alive. Some don’t want to be reminded that they should be visiting the PWD but aren’t.

I feel that the invisibility of care home residents and their carers - as opposed to patients in hospital and the healthcare staff - is a factor (one of several) in the poor pay and conditions for the staff.
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
I was thinking recently about how I live my life now I’m on my own, relatively free to do what I want.

I really don’t do that much. I visit Bridget regularly and on my free days try to fill them with something. I sometimes think that being on my own is a challenge to do anything at all without the motivation of someone else around. There that little bit of unease thinking I should be doing something rather than nothing.

But when I compare my time and activities to when Bridget and me were here, with Bridget displaying random dementia behaviour, we didn’t do much then either. Almost nothing apart from M and S for breakfast and then TV for the rest of the day. And that went on for at least two years. We just did it and I hardly ever thought my life was being wasted. It was because we did it together, even under the strain of dementia. Sure it was difficult but it was difficult together.

I suppose what I’m saying is there some reassurance to be had with the comparison of those bad old days and now. But there is a difference between doing little together and doing little on your own.
Peter
 

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