Dementia’s journey

[DianeW]

I’m so glad you had a nice visit, to use your own words, you do seem to want your cake and eat it……you know that’s not possible though, right?????

You can’t win….. there is no right or wrong way to be, all you can do is what’s right for you now, because you know Bridget is cared for so well, and is as settled as is possible with dementia.

Peter you have to find things to fill your days, not easy I know and that’s not so you forget Bridget…..no no no, but it’s a must so you are not sat dwelling on what you have lost……something you can’t change no matter how you torture and punish yourself.

You need to believe all the wonderful advice that your friends here have been giving you for years now, really believe, and accept that you did the absolute best you could and continue to do….. we all make mistakes Peter and think we should or shouldn’t have done xyz, but in your heart of heart know you did your best and you need to take comfort from that, and stop this punishing yourself…

Going to shut up now as I’ve had a lot to say for someone who said in the beginning I don’t post as have nothing positive to say……

Take care x

 

[Dutchman]

I’m so glad you had a nice visit, to use your own words, you do seem to want your cake and eat it……you know that’s not possible though, right?????

You can’t win….. there is no right or wrong way to be, all you can do is what’s right for you now, because you know Bridget is cared for so well, and is as settled as is possible with dementia.

Peter you have to find things to fill your days, not easy I know and that’s not so you forget Bridget…..no no no, but it’s a must so you are not sat dwelling on what you have lost……something you can’t change no matter how you torture and punish yourself.

You need to believe all the wonderful advice that your friends here have been giving you for years now, really believe, and accept that you did the absolute best you could and continue to do….. we all make mistakes Peter and think we should or shouldn’t have done xyz, but in your heart of heart know you did your best and you need to take comfort from that, and stop this punishing yourself…

Going to shut up now as I’ve had a lot to say for someone who said in the beginning I don’t post as have nothing positive to say……

Take care x

Thank you for your reply. There is nothing more I can do now apart from visiting. And I know I need to look after myself so I’m ok for Bridget.

People say she would want the best for me if she could say. But she can’t and I sometimes wonder what she would want for me as in the end, pre care home, she couldn’t stand me and just wanted to escape. When you love one another normally so much is taken for granted and perhaps too much is taken for granted.
Thanks again
Peter

 

[DianeW]

I think Peter that you have to base your knowledge and understanding of Bridget, not from when she was ill pre care home….. during that time, she will not have been thinking clearly or really been able to appreciate the care and support you gave her…….. that’s not a reflection on her or her feelings for you Peter, that’s just how the illness affected her…..

Please try to separate the Bridget you love, and who loved you right back for all those years, to the Bridget coping with the many stages of dementis who behaved and acted as she did because of her illness… not because that’s how she felt.

Of course your lovely Bridget would want the best for you……. Just the same as you do for her x x

 

[Dutchman]

I think Peter that you have to base your knowledge and understanding of Bridget, not from when she was ill pre care home….. during that time, she will not have been thinking clearly or really been able to appreciate the care and support you gave her…….. that’s not a reflection on her or her feelings for you Peter, that’s just how the illness affected her…..

Please try to separate the Bridget you love, and who loved you right back for all those years, to the Bridget coping with the many stages of dementis who behaved and acted as she did because of her illness… not because that’s how she felt.

Of course your lovely Bridget would want the best for you……. Just the same as you do for her x x

Thank you Diane for those comforting words. It takes someone else to see past the jumble of thoughts and emotions that I have. I went to see her yesterday and she really does seem content and when I ask she says she’s happy. So I need to believe her . The staff say the same and said they’d pick up if she was anxious.
I’m having two days off and today going for a long walk and tomorrow doing a Dartmoor walk with a group. It’s been awhile as I hurt my leg badly last year. I also have a canoe for our River Dart but that will have to wait till next week when the wind is not so brisk.
I’m also taking Maths GCSE course after missing out at school.
I’ve plenty to do it seems but the house is empty and silent and that’s the most emotional thing that wears me down and I can’t accept after 32 years of togetherness.

Peterxx

 

[DianeW]

You have to accept it Peter, it’s the reality of now x

Juse another thought, I think you need to stop asking Bridget questions like if she is happy etc, because she can’t give you an honest answer that you appear to gain reassurance from……her being settled and content demonstrates she is happy, don’t expect her to confirm it….she really cant…..if she said she wasn’t for example I don’t think that would be real.

I think you need to constantly be aware that communication is from Bridget with dementia, not the Bridget of old that of course would confirm her true feelings and love for you.

Maths….goodness I wouldn’t have a clue, enjoy your activities x

 

[jennifer1967]

good luck with the maths, i scraped it the 2nd time of trying when i went to college.

 

[Dutchman]

good luck with the maths, i scraped it the 2nd time of trying when i went to college.

Just doing functional at the moment to get me into it. Teachers years ago were rubbish and I didn’t bother so I’ve always felt I’d like to get GCSE as a challenge

 

[jennifer1967]

Just doing functional at the moment to get me into it. Teachers years ago were rubbish and I didn’t bother so I’ve always felt I’d like to get GCSE as a challenge

my husband told me stories of that time. he was born and bought up in devon in a rural farm. used to walk 3 miles there and back. getting the cane and having the blackboard duster thrown at you. ears being twisted. he never learnt much

 

[Dutchman]

my husband told me stories of that time. he was born and bought up in devon in a rural farm. used to walk 3 miles there and back. getting the cane and having the blackboard duster thrown at you. ears being twisted. he never learnt much

They just didn’t have the capabilities or techniques they have today. It really didn’t matter that much in the 60’s as jobs were plentiful and few qualifications were needed.

 

[Dutchman]

Hi everyone.,it’s Sunday and it’s quiet here and apart from visiting Bridget later don’t know what’ll do today.

A feeling has been creeping up on me recently that unnerves me and makes me feel uneasy. I’m getting used to living on my own ( no choice) and I’m also more at peace with Bridget not being here . Great you’d say, that’s much better not getting so emotional.

But while I was in a much darker place with grief, crying regularly, feeling extreme loss, I had a strong connection to her. The separation has diluted that. Not only is she separated from me but there isn’t the husband/wife connection that forms the bond. She’s lives her life and I have to get on living mine.
So the longer this goes on the normal married life and it’s memories fades into the distance. I just can’t imagine her here anymore with her noise and chatter, moving about and doing stuff. In fact, I can’t imagine anyone being here like that. Do we become more introverted and used to our own company? Are we more resilient and independent? I actually liked leaning on someone else and not having to think about everything.

Peter

 

[canary]

I think we become more resilient and independent. I have had to go far far out of my comfort zone to sort out things that OH used to do. OH is still at home, but that connection has already gone. Yes, it would be better if he were still well and we could talk about things and he could sort out the things that he used to do, or we could do things together, but that life has gone. It is no use living in a dream world of memory and imagination. Im sure that OH actually still loves me deep down, but his condition has blanketed all his thoughts and responses so he can no longer express this and respond as he once did. Its like a pearl sitting in a closed oyster - its there, but I can only rarely see it.

 

[Clarinda3]

I can really relate to that feeling @Dutchman. Feeling my loss intently kept me connected to my husband. I felt that if I let that feeling go then I was letting him go too. But I need to try to live my life and not just survive it. Psychotherapy, medication and a strong will is helping me to move forward. I don’t like it but I owe it to myself. The only thing I want is to have is our old life together back. But that will never happen and I am not willing to go on in survival mode, merely existing. It can be torture at times. I am 60 and it is the first time I have ever lived alone. My therapist told me that time does not heal, it is processing what has happened that helps us to heal. I am beginning to feel a better sense of myself after over 6 years being lost in our Alzheimer’s journey. For the most part, I have found acceptance which has brought me peace; though there is still a part of me that will never truly accept it. But that’s ok. I can live with that.

 

[Dutchman]

Thank you @canary and @Clarinda3 for those thoughts. Living alone is what some choose but to be forced into it and in extremely difficult circumstances, with living with someone with dementia , well it changes you dramatically.

The moment she walked away down our path with the care home staff completely innocent of where she was going and to leave me permanently for the first time in 30 years. It was like her dying. She sat in the back of their car and I waved her off, blew a kiss and walked back inside and collapsed in shock. I was then told not to visit for 10 days so she could get acclimatised to the home. My poor Bridget in a little room.

Three years now and I still can see her walking away down our path. Sometimes I look up and see her there looking at me through the French windows smiling.
Life’s so cruel
Peter xx

 

[Dutchman]

I wonder if anyone has any advice to give.

Bridget tries so hard to make herself understood as she can’t form the correct words and when she does try a sentence it’s almost impossible for me to know what she wants to say.

Her attempt to speak is relevant to the here and now and she tries to make herself understood but it all comes out wrong and she then has this look of resignation that’s so sad to see.

I talk to her about my life and try to engage her and naturally ask a question or try my best to agree with what she’s trying to say but communication is almost impossible. I just wish there were some techniques that I haven’t tried. I want so much to talk to her and for her to communicate back even at a basic level . Perhaps there’s nothing. I don’t know. It’s frustrating and cruel.

Would the care home staff have suggestions? Should I ask other experts? Am I expecting the impossible?
Thanks….. Peterx

 

[kindred]

I wonder if anyone has any advice to give.

Bridget tries so hard to make herself understood as she can’t form the correct words and when she does try a sentence it’s almost impossible for me to know what she wants to say.

Her attempt to speak is relevant to the here and now and she tries to make herself understood but it all comes out wrong and she then has this look of resignation that’s so sad to see.

I talk to her about my life and try to engage her and naturally ask a question or try my best to agree with what she’s trying to say but communication is almost impossible. I just wish there were some techniques that I haven’t tried. I want so much to talk to her and for her to communicate back even at a basic level . Perhaps there’s nothing. I don’t know. It’s frustrating and cruel.

Would the care home staff have suggestions? Should I ask other experts? Am I expecting the impossible?
Thanks….. Peterx

Peter, I make a lot of use of nodding and shaking head, thumbs up or down. Stuff like that. Is Bridget able to use body language like this at all?
I have more suggestions but don’t want to say things you will almost certainly have tried. And you know I understand. With love, Geraldine.

 

[Dutchman]

Peter, I make a lot of use of nodding and shaking head, thumbs up or down. Stuff like that. Is Bridget able to use body language like this at all?
I have more suggestions but don’t want to say things you will almost certainly have tried. And you know I understand. With love, Geraldine.

Please suggest all. Thanks for the reply. It all helps

❤️Peter

 

[kindred]

Please suggest all. Thanks for the reply. It all helps

❤️Peter

Yes, the care home staff may have noticed that she communicates better at some time than others. This often happens, communication deteriorates during the day.
I tend to get really close, hold both hands and say take as long as you like, I really want to listen.
Then I will nod encouragingly and wait, as still as a stone and repeat any words I can make out. So, I might catch the word. Night
So I will repeat. Night? And nod.
And it goes on like this.
I’m sure you do this anyway Pete.

 

[Grannie G]

Good morning @Dutchman

When my husband was losing his speech I took care to ask questions which would just require yes or no replies.

eg. Are you comfortable? Are you hungry/thirsty?

The success of this will depend whether or not your wife still has an understanding of language even if she is losing her expressive skills.

When our son visited his father he would talk to him about the same things every time. He would tell him about his work, his children, football and anything else of a mutual interest. Our granddaughter would bake for him and our son would take him a slice of her cake each week saying L had baked it especially for him.

When I visited I would take some special fruit which might not be served in the home. I would make a gift of a blush pear or some grapes.

Anything to make a connection. It`s just a case of trial and error.

 

[Jaded'n'faded]

Peter, it is so complicated. It's not as simple as Bridget struggling to find words. When you say something to her, she has to try to process it. That may not be possible. If she does manage to process something of what you've said, she has to retain that info while she tries to formulate a reply. So she's trying to think what she wants to say at the same time as trying to keep in her mind what you said to her.

Unfortunately, this is almost impossible to do. So she starts to say something then stops because she's forgotten what you said and what she wanted to say back. Then there's that look of resignation because at some level she realises she's lost the thread of what's going on.

That's how it seems to me- it may not be scientific!

The brain uses so many processes in order to conduct a conversation. Many of these things happen automatically if you don't have cognitive impairment, like remembering what has been said to you, but a person with dementia just can't rely on these processes anymore as they mostly don't work. If you don't have the automatic bits, anything you try to do is SO much harder. A good example of this is possibly walking downstairs. If you had to think through every single process involved, it would take you all day. That's why robotics people struggle to get robots to do what we consider to be very simple tasks. The human brain is an amazingly complex, incredible thing... until dementia starts to destroy it.

I don't think there's anything in particular you are missing, any technique that would help. All you can do is what @kindred says and try to concentrate her attention on one simple thing at a time. What might seem obvious to you might not be to Bridget. I'd even suggest you start by telling her, 'I'm talking to you, Bridget' and take her hands to make a physical association too, because she may not even have processed that it's her you are talking to.

Hope that makes sense...

 

[Quite contrary]

I was wondering if you could try visual cues like pictures, gestures, miming. They are the sort of methods that are used with additional needs who have communication difficulties. Miming might even cause you both to laugh at your efforts!