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Dementia’s journey

Chaplin

Registered User
May 24, 2015
50
Bristol
Hi Peter, I so empathise with your difficult separation. My parents have been together 67 years, married for 63 at the end of the month. Although in a care home the past six months, dad visited her every morning and me my sister and brother used to share afternoon visits. It was important to us for her not to feel abandoned and she constantly asks when she is going home! This enforced separation is so hard. I know it’s a matter of time before they close the doors on all visitors but due to dad being 85 he has to be in isolation but we think tomorrow will be out last opportunity to see mum too. The care home is allowing 2 visits per resident per week as long as you are fit and well of course.
The home is taking bookings for a Skype call for residents to stay in touch with family. Do you think that would help Bridget maintain the visual comfort of still seeing your face? Might be worth asking.

let’s hope this awful disease has done its worst and will be a distant memory in the near future! Take care, Tracy
 

Dutchman

Registered User
May 26, 2017
595
Devon
Hi everyone. Thought I’d share with you how I feel and I’m sure it’s not far from how others are feeling as well.

Had a Skype with the home yesterday but Bridget was unable to understand what was going on although she did wave at me as I waved back. Lasted about 5 minutes. Shes still well as are all the others in the home.

i find the whole experience incomprehensible sometimes because little by little we’re drifting apart. Bridget even started to distance herself from me when she and I were together (I wasn’t her husband anymore) but being in the home we rescued some sort of connection.

Now, with a forced absence, any connection is bound to be hard to keep. I’m even getting used to being on my own and this I’m finding frightening because I don’t want to get used to it.

But I miss her physical connection like losing a part of me. She is firmly in someone else’s world now . It’s hard to put into words but its like she’s of the world but not my world, and I’m trying to cling on to any remains of when we were together and it’s slipping out of my hands.

How is anyone else getting through this? Are you equally torn over this?

please keep in touch

peter
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,899
England
I’m not going through it as such @Dutchman because my husband passed away 4 years ago, in fact 4 years tomorrow. He lived with Alzheimers for 11 years, 7 at home with me and 4 in a nursing home. For the last two years he was at home he lost me as his wife. I became someone who was with him whilst he waited for me to come home. Sadly I never did but he seemed content and trusting of me so that was fine with me. There are things we can’t alter. I knew who he was and that was not going to change. So we had 6 years of me being a nice lady who looked after him but he was still my lovely husband, I held tight onto that.

It must be very difficult caring whilst all this goes on and difficult not to visit. I visited daily so I know I would have been feeling it very much., hold on tight, my thoughts are with you and all other Carers with all this extra to deal with.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,751
69
Dundee
Like Jaymor I’m not going through this just now @Dutchman but for what it’s worth I do sympathise with you and all of our members who are. My husband died 4 years ago come July. He had dementia for 15 years. I was able to keep him at home for all of that time with the support of carers. Towards the end I believe he recognised me as someone who loved him and looked after him but not as his wife. I never stopped loving him for one minute - I still do and I miss him very much.,

As I say I can’t totally understand what you’re going through but I’m thinking of you and I wish you strength. I’m glad you have the forum to come to and share your thoughts.
 

Stacey sue

Registered User
Jan 24, 2020
16
I can relate to everyone of your posts @Dutchman, I tell my self I can have my husband home and look after him,I think that is exactly what he would want?? This lockdown just upsets me soo much,just want to cry all the time, but it’s not about me! I too live in an empty house full of memory’s.Will he know me in a couple of months? I doubt that, such a cruel evil disease,especially for the partners. Dave won’t be aware of the virus or how upset I am at not being able to visit. He is in his own little world. Stay safe all.
 

Dutchman

Registered User
May 26, 2017
595
Devon
I’m self isolating (72) and like loads of people don’t know what to do but forced to do very little. It’s very tempting to just stay in bed.

I tried Skype yesterday but Bridget doesn’t know me and it’s even more difficult just looking at a computer screen.

I've been thinking about the whole business. When she suddenly refused to acknowledge me as her husband of 30 years that’s when something broke inside of me. Somehow I carried on but everything deteriorated so quickly after that.

I had no affection, closeness, companionship, help around the house, no sharing of just ordinary stuff that couples do. I had no real depth of understanding of how to manage the dementia and often shouted, threatened, and generally at times was nasty to her. She could help any of it because dementia had her in a tight grip.

Now I’m ashamed to say that although I miss her and love her unconditionally, she’s not my Bridget anymore and this forced separation is getting me used to her not being around.

We are on our own in the end and no one can replace our loved ones when all it would take sometimes is an arm round my shoulder, a shared cry.
Bridget’s in a different world now and I wouldn’t even know if she struck up a relationship with one of the men there. After all I’m only her friend now and after 12 weeks I’ll be nothing at all.

Bless you all for listening. Peter
 

kindred

Registered User
Apr 8, 2018
2,409
I’m self isolating (72) and like loads of people don’t know what to do but forced to do very little. It’s very tempting to just stay in bed.

I tried Skype yesterday but Bridget doesn’t know me and it’s even more difficult just looking at a computer screen.

I've been thinking about the whole business. When she suddenly refused to acknowledge me as her husband of 30 years that’s when something broke inside of me. Somehow I carried on but everything deteriorated so quickly after that.

I had no affection, closeness, companionship, help around the house, no sharing of just ordinary stuff that couples do. I had no real depth of understanding of how to manage the dementia and often shouted, threatened, and generally at times was nasty to her. She could help any of it because dementia had her in a tight grip.

Now I’m ashamed to say that although I miss her and love her unconditionally, she’s not my Bridget anymore and this forced separation is getting me used to her not being around.

We are on our own in the end and no one can replace our loved ones when all it would take sometimes is an arm round my shoulder, a shared cry.
Bridget’s in a different world now and I wouldn’t even know if she struck up a relationship with one of the men there. After all I’m only her friend now and after 12 weeks I’ll be nothing at all.

Bless you all for listening. Peter
Peter, I always read your posts and am with you in spirit and wish I had something useful to say apart from that. I don't like looking at a computer screen face either.
I do know that the married relationship is one of the most difficult conceptually for anyone with dementia to retain in understanding. We have to endure so many emotional shocks and this is one. My husband told me that I was dead and he had been to my funeral!!
When people asked (and boy, did they ask as if it were some kind of obsession) Does he know you, I would reply, no, but I know HIM. That was my mantra. I think there is something in that. I kind of retained enough knowing for both of us.
This doesn't mean it wasn't torment every inch of the way, Peter, as yours is. Thinking of you, I know how bad this is, and you know I know.
with love, Kindred.
 

Dutchman

Registered User
May 26, 2017
595
Devon
Thanks Kindred.

i try to keep busy but as I do I always seem to come across something of Bridget’s, that little memory comes back of where we were, how she used her make up. Those things you use to get hard skin off your feet, special hair conditioner, oh and loads of other stuff that filled the bathroom and her space in the bedroom.

none of this is needed now as she lives a very uncomplicated life. I phoned the home this morning and was told that she’s ok. Apparently she walked around the home with the flowers I brought and wouldn’t let them go. I picture this in my mind and this got me crying again as it just shows there’s something, some emotion there and I can’t do anything about it

I asked the carer if there was any chance that Bridget might show affection towards one of the men and she said it’s highly unlikely. She’s my Bridget and , as you point out, I know her.

Kindred, you’ve always been there for me and for that I can’t thank you enough.

peter
 

rhubarbtree

Registered User
Jan 7, 2015
494
North West
Hi Dutchman,

Feel I need to comment on your post but have no solution. My OH went into a Nursing home only a few weeks ago and I did not have time to adjust before lock down. It seems our tragedy is just tiny compared to the greater tragedy unfolding but it still hurts. We needed time to slowly withdraw ourselves and start this strange new life (I joined a few clubs and classes which have now closed). Our relationship with our partners will never return but we need to be around to advocate for them.

Kindred - It is strange that everyone asks that question. As if it is a line in the sand. I like your answer and may have to start using it. At the moment my OH looks delighted to see me (bringing prepared fruit and treats) and calls me Darling (but truthfully that was always his way of greeting a woman whose name he had forgotten). As you said "I know him".
 

Dutchman

Registered User
May 26, 2017
595
Devon
Peter, I always read your posts and am with you in spirit and wish I had something useful to say apart from that. I don't like looking at a computer screen face either.
I do know that the married relationship is one of the most difficult conceptually for anyone with dementia to retain in understanding. We have to endure so many emotional shocks and this is one. My husband told me that I was dead and he had been to my funeral!!
When people asked (and boy, did they ask as if it were some kind of obsession) Does he know you, I would reply, no, but I know HIM. That was my mantra. I think there is something in that. I kind of retained enough knowing for both of us.
This doesn't mean it wasn't torment every inch of the way, Peter, as yours is. Thinking of you, I know how bad this is, and you know I know.
with love, Kindred.
I tried Skype again today. Bridget got in front of the screen but had no idea what was going on, got really agitated and refused to sit there. I’m going to the home tomorrow with some items ( cake and flowers) but I have to sure Bridget can’t see me from the home.

Judging by today’s reaction Im convinced she won’t know me at the end of the lockdown. So I ask myself the questions ......for who’s benefit am I going for? Have I been visiting in the hope of keeping some part of our relationship going? How do I keep any loving emotions alive when there’s going to be no real relationship for 3 months? Am I fooling myself? Is this it now, Im really on my own?

I'm miserable most of the time and today just didn’t see the point in getting out of bed. Finally surfaced at 13.00, showered but still can’t see the point of living like this. Oh Kindred, I know life's not guaranteed to be fair but I could have been cut a bit of slack, don’t you think!

bless you Peter xx
 

Dutchman

Registered User
May 26, 2017
595
Devon
Talk to us. And keep safe. I found the police very kind, I know it goes against the grain to call them but believe me they are used to it.
When I had to, one of them said to me, you arent alone and I asked him what he meant and he said they had dozens of calls every week, sometimes every night from people in my small area alone. Folk trying to cope with their loved ones who have dementia.
Keep talking to us. Warmest, kindredx
Hello Kindred. I follow your posts. You’re so very kind.

i find getting my emotions down helps me so please bear with me. I don’t know why but just when I thought I’d made some progress then I’m overwhelmed but grief. This lock down is not helping

it seems that I’m having the same old thoughts again which I had months ago. I’m lonely for her and keep blaming myself for being like I was while we were struggling with Bridgets dementia.

When I look back i believe I’ve always been self centred even selfish sometimes. All my early forum posts are me moaning about Bridget’s dementia behaviour and , I’m afraid to say, only thought how it affected me. I could of been more thoughtful , more kind and understanding. But I wasn’t and I still believe I pushed her into a corner she wanted to escape from.

Now she has escaped into a different world. Oh yes, I know everyone I’ve spoken to says I did the right thing, the only thing I could do in the circumstances when I placed in the home. But, I feel wretched that all this was done behind her back and now I’m living with the consequences.

There that’s it really. We’re on our own with our thoughts and right or wrongly logic plays no part in making us feel better. This is the worse my life has been because I’ve lost (she doesn’t know me as Peter her husband) the only person I’ve ever really loved.

Peter
 

kindred

Registered User
Apr 8, 2018
2,409
Hello Kindred. I follow your posts. You’re so very kind.

i find getting my emotions down helps me so please bear with me. I don’t know why but just when I thought I’d made some progress then I’m overwhelmed but grief. This lock down is not helping

it seems that I’m having the same old thoughts again which I had months ago. I’m lonely for her and keep blaming myself for being like I was while we were struggling with Bridgets dementia.

When I look back i believe I’ve always been self centred even selfish sometimes. All my early forum posts are me moaning about Bridget’s dementia behaviour and , I’m afraid to say, only thought how it affected me. I could of been more thoughtful , more kind and understanding. But I wasn’t and I still believe I pushed her into a corner she wanted to escape from.

Now she has escaped into a different world. Oh yes, I know everyone I’ve spoken to says I did the right thing, the only thing I could do in the circumstances when I placed in the home. But, I feel wretched that all this was done behind her back and now I’m living with the consequences.

There that’s it really. We’re on our own with our thoughts and right or wrongly logic plays no part in making us feel better. This is the worse my life has been because I’ve lost (she doesn’t know me as Peter her husband) the only person I’ve ever really loved.

Peter
Peter. thank you, it is so very good to hear from you. We aren't able to be logical at the moment really, this virus has put us all into a state of dazed shock. Please don't blame yourself for things which are really the human condition, like grief which comes and goes in waves.
My mum had multiple sclerosis for forty years and everyone thought my dad should be so relieved when she finally died … but he was lost and alone and had lost his meaning and purpose. Folk can't understand Peter, not unless they've been there.
I think we all look back and think we could have been more understanding. Know I could!!
And now of course we've got the lockdown to make things even worse.
All my sympathy. I think I'm falling into a kind of magic thinking that if I work myself into the ground being a very good person, somehow Keith will come back. God, it really hurt to type that, but as you share so openly, thought I would. And this is something we all have to be grateful for, your willingness to share which helps and gives meaning to us all.
Never hesitate to keep in touch. with love, Kindred.
 

Dutchman

Registered User
May 26, 2017
595
Devon
Kindred, thanks for getting back to me so quickly.

as I write this I’m a sobbing mess. I’ve just arrived back from visiting the care home. How I drove home I don’t know.

I took some flowers, chocolate, a picture of me and a greeting card. Someone came to the door and took them.

As I was walking away a carer knocked on the office window and there, with the carer, was my darling Bridget. ‘Look Bridget it’s Peter’

.Immediately she saw me through the window she smiled and put her hands up to me and then put her fingers to her lips and made several kisses for me. She remembers me and has fond feelings still for me. I made kisses back. And this is what really got me is that she said ‘are you coming in’. The carer distracted her by saying we should put the flowers in water.

I really feel I’m back where I started almost 7 months ago, I really felt I was making emotional progress and now I’m left with this image of Bridget wanting me, giving kisses to me, still perhaps even loving me. I want so much to look after her and I can’t.

like you I have these fantasies that she’ll walk up the path, that we’d sit together making plans, that we’d just hold each other again.

sorry can’t go on. Peter
 

Philbo

Registered User
Feb 28, 2017
801
Kent
Oh Peter - I feel so sad for you. Your post made me cry too.

I am further along than you, as my dear wife (of 48 years) passed away in January. I had carefully built a support network over the 6 year "journey", centred on our lovely local town pub. One aim was to give me something for when the inevitable happened.

Well it was certainly providing the comfort and support, both at the time of her passing and in the weeks since. Our wonderful friends have been great but of course, but although many are still keeping in contact via messaging etc, the physical interactions are gone - and for how long, God only knows.

So in a way, like you, I felt that I was progressing emotionally but now it all seems in tatters. The one thing I hang on to, is that over these years, I have surprised myself by getting through the various traumas we encountered. I also know that she would not have wanted me to fall apart - easier said than done?

Perhaps at least for the moment, you can hang on to (and focus) on the obvious pleasure Bridget got from seeing you, as heart rendering as not being able to physically be with her, must be?

My thoughts (and I am sure everyone on the forum) are with you, so please keep safe.

Regards
Phil
 

Dutchman

Registered User
May 26, 2017
595
Devon
Thanks Phil. I would be lost without you guys on the forum. Unless you’ve been there people can’t really appreciate what we’re going through.

I spoke with an Admiral Nurse when I got home( again thank God for an Admiral Nurse) and we tried to make sense of my upset. Normal , why wouldn’t you be upset, you’re human and fragile and going through stuff most people can only imagine.
I’m Skyping again later and hope she and me get something good from it.
You’ve done well to get a social life built to support you. I have my church which is a great comfort even if the services and meet ups are all on line.
Bless you . Peter
 

kindred

Registered User
Apr 8, 2018
2,409
Thanks Phil. I would be lost without you guys on the forum. Unless you’ve been there people can’t really appreciate what we’re going through.

I spoke with an Admiral Nurse when I got home( again thank God for an Admiral Nurse) and we tried to make sense of my upset. Normal , why wouldn’t you be upset, you’re human and fragile and going through stuff most people can only imagine.
I’m Skyping again later and hope she and me get something good from it.
You’ve done well to get a social life built to support you. I have my church which is a great comfort even if the services and meet ups are all on line.
Bless you . Peter
Bless you too Peter. It’s so good that you told us about the admiral nurse and being human and fragile. Thank you for that. We’re now living in times which are not really human, isolating, social distancing, treating others as though they were dangerous. So that’s an additional strain. What’s hard to is to be consistent in our emotions, we tend to sway between feeling more in control and then helpless and that’s all normal too.
Thank you, Peter. With love Kindred
 

Dutchman

Registered User
May 26, 2017
595
Devon
Bless you too Peter. It’s so good that you told us about the admiral nurse and being human and fragile. Thank you for that. We’re now living in times which are not really human, isolating, social distancing, treating others as though they were dangerous. So that’s an additional strain. What’s hard to is to be consistent in our emotions, we tend to sway between feeling more in control and then helpless and that’s all normal too.
Thank you, Peter. With love Kindred
Hi Kindred

Skype is a waste of time for Bridget as she comes into the office of the home and says ‘no I don’t want to’ quite forcefully and walks away.

im going tomorrow to deliver some pull ups and I could ask that Bridge be brought to the window to see me. BUT last time she blew me kisses and asked that I come in. That was so upsetting and took me a while to get over it.
I too sway between emotions like going to the home out of loyalty or missing her like mad and staying in doors away from it all but then I feel like a bit of a coward for not making the effort.
I feel I’m going to be posting on the forum for some yet because even after these 8 months of being apart I still don’t want to fully accept that she’s not coming home. Is this normal?
And, of course, this dilemma I find myself in doesn’t help my state of mind. And also the longer it goes on I find I forget how bad it was here last year and how I wanted nothing more than to get rid of the dementia behaviour. Pity I didn’t record some of it!

I think of the normal good times we had more and more now. That was my Bridget. Not this shadow of a once vibrant intelligent woman.

take care

Peter xx
 

northumbrian_k

Registered User
Mar 2, 2017
1,002
Newcastle
Hi @Dutchman, I do appreciate your situation and the mixed emotions as my wife is in lock down too. I worry that you don't seem to be able to find anything positive to help you. A while back you were upset at the thought that your wife would forget you. Now that she has seen you and remembered you in a fond way this has upset you too. Try to recognise and be glad of the little crumbs of positivity that come your way. I have not seen my wife but I know that me not being able to visit will not change the care that she receives. I have sent her two letters full of trivia about things that we shared before dementia. Although the care staff will read them to her she will soon forget. But writing them has done me good and brought her closer. What I am trying to say is that, instead of thinking about how things are now and what has been lost, I try to draw comfort from all of the things that were good in our life together. As ever I write this with good intentions and do hope that it will help you.
 

kindred

Registered User
Apr 8, 2018
2,409
Hi Kindred

Skype is a waste of time for Bridget as she comes into the office of the home and says ‘no I don’t want to’ quite forcefully and walks away.

im going tomorrow to deliver some pull ups and I could ask that Bridge be brought to the window to see me. BUT last time she blew me kisses and asked that I come in. That was so upsetting and took me a while to get over it.
I too sway between emotions like going to the home out of loyalty or missing her like mad and staying in doors away from it all but then I feel like a bit of a coward for not making the effort.
I feel I’m going to be posting on the forum for some yet because even after these 8 months of being apart I still don’t want to fully accept that she’s not coming home. Is this normal?
And, of course, this dilemma I find myself in doesn’t help my state of mind. And also the longer it goes on I find I forget how bad it was here last year and how I wanted nothing more than to get rid of the dementia behaviour. Pity I didn’t record some of it!

I think of the normal good times we had more and more now. That was my Bridget. Not this shadow of a once vibrant intelligent woman.

take care

Peter xx
This isn't a test, Peter, though by God it feels like one doesn't it. See how you feel when you get to the Home about asking for Bridget to be brought to the window. Of course it's a risk, but then if it doesn't work today, it might tomorrow … of course it's normal to not accept fully she's not coming home. Like I said, my magic thinking is that if I am a VERY GOOD HARDWORKING PERSON, somehow I will win Keith back! Magic thinking is normal. TS Eliot (who was a bit of a miserable git sometimes) said mankind cannot accept too much reality.
Too right, I think, when this is the reality!! Just see what you can do and if you can't, hold on to that lovely time when she blew kisses.
with love, Geraldine