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Dementia’s journey

Bun

Registered User
Oct 2, 2021
49
0
Hello Peter, you tell me! I don't know, he went in last march.i am allowed to take him out. We live on the coast, he can walk. Funny situation, I don't have to have covid test, but I do if I visit in conservetry. I can take him out every day. But when I take him back have leave him on the doorstep. Very upsetting for him and me. The carer who comes to the door has to distract him by saying, have a cup of tea and cake, he asks why I can't go in tell him I'm not allowed, I will be back soon. He has vascular dementia, very very short term memory, diagnosed in 2010, been very slow untill now. But thankfully he still knows me, I am so grateful for that. Sorry I'm late I put phone on charge. Don't have computer or Tablet. This sight is new to me, still finding my way around. Good to chat to you.
 

Andy54

Registered User
Sep 24, 2020
87
0
There are so many inconsistencies in the visiting arrangements across care homes. The problem seems to be that the government guidelines are open to interpretation by individual care home managers and they are left to make their own risk assessments and are free to implement whatever system they deem appropriate. My wife's care home allows indoor visits (pre-booked and subject to rapid flow tests first) but only residents who are not capable of leaving their rooms get room visits., "normal" visits are either in the large main lounge area or a couple of other rooms near to reception so most visitors do not venture beyond the "public" areas of the home.
 

Scarlet Lady

Registered User
Apr 6, 2021
104
0
Hi, @CAL Y . Thanks for your kind comments, especially on such a sad day. I appreciate it and I’m sure it gives us all pause for thought as to how we might feel at the end of this long arduous journey. There are no right or wrong answers along the way, we simply do the best we can, but I think we need to believe we will have a life worth living at the end of it, otherwise dementia has destroyed us as well. And we have to remember that, however much we loved our partners, we still existed as fully functioning people before we met them and we can continue to do so if we let ourselves. God bless you and your family and may you find light and love in the days to come.
 

Dutchman

Registered User
May 26, 2017
1,530
0
74
Devon, Totnes
Hello @ Scarlet Lady. I just want to say that , in spite of the sympathy I feel for Peter I really could have written the same post as you did. Mercifully, the dementia “journey” ended for my husband almost three weeks ago after a cancer diagnosis.
Today was his funeral and I think that I’m now in a better position than many people on this Forum.
As much as I am heartbroken today, my husband is now at peace and I feel that I have been released.
I believe that I can only feel this way because I have accepted the help, care and love of all our friends and family.
I do hope that Peter can do the same as I have. It’s never going to be easy for him but the alternative is much more painful.
Hello @CAL Y . Im so glad you can now feel more at peace and experience release. And thank you for all your kind comments
Peter
 

Dutchman

Registered User
May 26, 2017
1,530
0
74
Devon, Totnes
Everything is conspiring to make me feel miserable this morning. It’s cold and the boiler isn’t working properly ( never mind the increase in energy costs!), I’ve got sciatica in my leg and I’m hobbling round like a old man and I haven’t got Bridget to encourage and comfort me.

Apart from that I’m mindful of the fact that this is probably “self pity”. But, in many ways, I think I’m allowed this bearing in mind what I’ve been through and still going through.

What also passed through my mind this morning is the feeling that I’m not doing much in my life apart from visiting Bridget every other day. What’ll do when that ends? But when she was here at home during those end years we didn’t do much at all. Hardly any friends, watched tv, shopping, maybe a trip out, and that was full of anxiety.

And do others do much more anyway? How do you all fill your day?
Off to Morrison soon if I can hobble that far.
 

notsogooddtr

Registered User
Jul 2, 2011
1,061
0
Everything is conspiring to make me feel miserable this morning. It’s cold and the boiler isn’t working properly ( never mind the increase in energy costs!), I’ve got sciatica in my leg and I’m hobbling round like a old man and I haven’t got Bridget to encourage and comfort me.

Apart from that I’m mindful of the fact that this is probably “self pity”. But, in many ways, I think I’m allowed this bearing in mind what I’ve been through and still going through.

What also passed through my mind this morning is the feeling that I’m not doing much in my life apart from visiting Bridget every other day. What’ll do when that ends? But when she was here at home during those end years we didn’t do much at all. Hardly any friends, watched tv, shopping, maybe a trip out, and that was full of anxiety.

And do others do much more anyway? How do you all fill your day?
Off to Morrison soon if I can hobble that far.
You are 'allowed' self pity Peter but it's making you so miserable. You are also allowed to try to build a better life for yourself.
 

Andy54

Registered User
Sep 24, 2020
87
0
I don't do that much most days, it's not that I can't think of suitable activities it's more a lack of motivation, somehow it's easier to deal with solitude at home than to involve myself in any activity on my own outside of my own environment. I was thinking about the whole "self pity" thing last night and yes I'm guilty of that on occasion and I came to the conclusion that it was largely a result of now feeling unloved now that D doesn't recognise me anymore.
 

Dutchman

Registered User
May 26, 2017
1,530
0
74
Devon, Totnes
Hi @Andy54 and @notsogooddtr

Just got back from visiting Bridget. She’s obviously incapable of having sympathy for my bad leg but that’s ok, as long as she’s happy it’s one less thing to worry about.

Got a tree needs pruning this afternoon which should keep me busy for a couple of hours.

No one wants to loose love in normal times and the loss of love is dreadful but understandable if it’s through dementia. At least Bridget forgot me and can’t love me as she used to because of her illness. We loved till the end.
As I go along I find little understandings along the way.
 

Bun

Registered User
Oct 2, 2021
49
0
Hi Duthman, sorry u have a low mood, having a painful leg won't help. I have started a walking group on a Thursday morning, only 4 of us so far. We meet up at 10.00, had a walk along the beach, cold morning but enjoyed it. Walked for hour and a half. Thinking of joining sports centre. I go to church Sunday, church coffee morning weds. Have councilng weds aftn. Visit jack, I'm lucky enough to be able to take him out, he is 91 years but mobile. May I suggest u find something one day a wk, while u still have Bridget. How's that for a suggestion? Go to the Library find out what's going on in your town. We have to try to make a life for ourselves Peter. Otherwise we become consumed with our loved one, this situation won't last forever. Bless you take care, hope u got on ok trimming the tree,😄🙋
 

Dutchman

Registered User
May 26, 2017
1,530
0
74
Devon, Totnes
Thanks @Bun.

I have good friends through my church as well as others I’ve got before I joined. I’m probably better off than some. I think of all the positive things I have…relatively healthy, nice home, Bridget well cared for, friends and family and it could be worse, of course.
I enjoy walking so that’s why this recent leg problem has annoyed me so.
Yes you’re right of course that I shouldn’t revolve around Bridget exclusively and I do try not to. But it’s hard of course when I’m hard wired after 30 odd years of togetherness.
Bless you and bless Jack
 

Bun

Registered User
Oct 2, 2021
49
0
Yes it is hard, we have been married 36 yes, I never thought jack would get dementia,no more then u did with Bridget. I have to shake myself sometimes, I can't believe he has it. He was always so fit, and still is for his age. Believe he is in the middle and later part of this dreadful disease. Bless you and Bridget. 🌈
 

CAL Y

Registered User
Jul 17, 2021
118
0
Hi @Andy54 and @notsogooddtr

Just got back from visiting Bridget. She’s obviously incapable of having sympathy for my bad leg but that’s ok, as long as she’s happy it’s one less thing to worry about.

Got a tree needs pruning this afternoon which should keep me busy for a couple of hours.

No one wants to loose love in normal times and the loss of love is dreadful but understandable if it’s through dementia. At least Bridget forgot me and can’t love me as she used to because of her illness. We loved till the end.
As I go along I find little understandings along the way.
Hello Peter. How I agree with your comment about losing love.
This is the second time I’ve been widowed and I have been lucky enough to have had two husbands who I know adored me.
When this is taken away, self esteem plummets and whilst I know I have the love of my family and brilliant supportive friends somehow it’s just not the same is it.
As I’ve previously mentioned, my husbands funeral was on Tuesday.
Today I went to our local pub at lunchtime and had a couple of hours of all the same old banter and nonsense that we had always enjoyed as a couple.
Thats what you can do with such great friends. No awkwardness.

That doesn’t mean that I’m immune to the heartache and this last three weeks I have had plenty of “howling at the moon” moments where I thought what’s the point of life.
But, after getting that out of my system ( for the moment) I’m able to go back to feeling more optimistic .
I keep the misery in my own home. There is only so much sympathy out there. Other people soon tire of someone whose unhappiness brings them down.
 

Dutchman

Registered User
May 26, 2017
1,530
0
74
Devon, Totnes
Hello Peter. How I agree with your comment about losing love.
This is the second time I’ve been widowed and I have been lucky enough to have had two husbands who I know adored me.
When this is taken away, self esteem plummets and whilst I know I have the love of my family and brilliant supportive friends somehow it’s just not the same is it.
As I’ve previously mentioned, my husbands funeral was on Tuesday.
Today I went to our local pub at lunchtime and had a couple of hours of all the same old banter and nonsense that we had always enjoyed as a couple.
Thats what you can do with such great friends. No awkwardness.

That doesn’t mean that I’m immune to the heartache and this last three weeks I have had plenty of “howling at the moon” moments where I thought what’s the point of life.
But, after getting that out of my system ( for the moment) I’m able to go back to feeling more optimistic .
I keep the misery in my own home. There is only so much sympathy out there. Other people soon tire of someone whose unhappiness brings them down.
I too usually keep my sadness to
myself ( apart from on here) and agree with you that others don’t generally want my unhappiness to infect their lives.

On the 18th December there’s going to be a pre Christmas meet up. It’s going to be awkward being with family who will be ,one by one as they arrive, wanting to know how Bridget is. Got to get through the day as best I can for my daughters sake who’s put together this family party.
Perhaps I’ll let them come to me if they want as I sit nursing a mince pie.
 

Bun

Registered User
Oct 2, 2021
49
0
Yes it is hard, we have been married 36 yes, I never thought jack would get dementia,no more then u did with Bridget. I have to shake myself sometimes, I can't believe he has it. He was always so fit, and still is for his age. Believe he is in the middle and later part of this dreadful disease. Bless you and Bridget.
 

Dutchman

Registered User
May 26, 2017
1,530
0
74
Devon, Totnes
On the advice of many I don’t visit Bridget everyday ( every other day) and consider my day off as essential for coping with the whole situation. I know it’s only a day but it seems such a long time till the next visit.

Another husband who visits his wife at the home comes most days and he sits with her for many hours. Puts me to shame when I just stay for meal time, walk around a bit and then go home - 90 minutes tops. I ask myself am I really that committed? Is it all a sham, a pretence, in other words am I fooling myself into thinking I’m the grieving loyal husband.

I only know that when I’m there I feel such a strong bond, miss her terribly, love her so, want so much, that 90 minutes is all I can manage and would staying longer really achieve anything? . Another dilemma to wrestle with.
Do others have these concerns? I’d love to have just one day when I’m free of all this
Peter
 

Bun

Registered User
Oct 2, 2021
49
0
Peter, please don't compare yourself to others. His wife could be at a different stage in dementia. Stop beating yourself up. This dreadful disease is so complex anyway. You mentioned Bridget didn't give you sympathy about your leg, that's not Bridget, it's the dementia. Our loved one's r in a state of confusion at times and so r we. You r doing everything u can for her. U r a kind loving husband, stop doubting yourself. Bless you 🐱 Jenny.
 

Andy54

Registered User
Sep 24, 2020
87
0
Yes visiting has become something of a dilemma for me. I usually visit every 3 days or so but recently D doesn't seem happy to sit with me, the last few visits have ended up being cut short after 20 or 30 minutes because she has got restless & agitated. I long to see her but she no longer seems to get anything from my visits, I basically end up as her "minder" for the duration of the visit which starts to become a little stressful at times. I look forward to seeing her, feel apprehensive on the way then come home feeling deflated but I still need to go. I know that there is no way of winning in this situation but I can't give up.
 

Bun

Registered User
Oct 2, 2021
49
0
My husband was cool towards me on a few occasions, when I visited him. Now he is pleased to see me, gets upset when I come away, I find that distressing, but I am still going. D may just of had an off day, nothing to do with u, it's the dementia.