Dementia’s journey

[Wifenotcarer]

I am busy today trying to sort out Christmas presents for the family. It reminded me what a struggle I had the last couple of years trying to think of things that might please or interest Ian. Eventually settled for new warm PJs, CDs of him playing with his bands (they had a CD player in the home) and loads of chocolates which he loved. I reckoned that as he was consistently losing weight that it would do him no harm to indulge himself with his favourites.
I read your post above and it occurred to me that asking what Bridget's son would be getting his Mum for Christmas, might encourage him to take a bit of interest. Also wondered what YOU are planning to give her? Does she have a favourite perfume or favourite sweets?

 

[Stacey sue]

I don’t know if I can visit anymore as it is? They bring him down and sit him behind the glass door, he can hardly keep his eyes open.Not sure if he is getting anything from my visits, I just get upset and I find it cruel ,He used to try to open the door,but not anymore. Our family don’t want to go until they can go in.??? I phone and speak to him,he doesn’t speak . When will this end.?? From one couch potatoe to another.
xx

 

[Dutchman]

I don’t know if I can visit anymore as it is? They bring him down and sit him behind the glass door, he can hardly keep his eyes open.Not sure if he is getting anything from my visits, I just get upset and I find it cruel ,He used to try to open the door,but not anymore. Our family don’t want to go until they can go in.??? I phone and speak to him,he doesn’t speak . When will this end.?? From one couch potatoe to another.
xx

Hi Stacey sue. Your post has been well timed as i was just going to post anyway. My experience with Bridget is almost exactly the same and it’s heartbreaking. Often i just return to the car and cry and it’s several minutes till i get it together so i can drive home.

Im not sure if i should be speaking like this but today i promised myself a Bridget anxiety free day it’s nearly worked. But ( and it’s a big but) the trouble with that is it
reinforces the separation from her and together with lockdown and the inevitable decline in recognising me, well, i feel, what’s the point. All i’m doing is punishing myself with the hanging on to the last pieces of what we were. Like you i feel reluctant to visit, then i feel guilty, then i feel miserable about the whole situation.

What i’m trying to say in in a awkward roundabout way is that would it be better if i didn’t go. And , i’m ashamed to say, what would it be like if i didn’t have go, and i can’t even write this down, but you probably understand what i mean.

But we go, don’t we, because we love them so very much. We want to see them and we get upset when we do. It’s not fair and there’s nothing i can think of that will lessen the cruelty apart from being totally honest and and understanding on the Forum so that we feel a togetherness through all of this.

Peter xx

 

[Dutchman]

And so it goes on. I’ve just watched a stupid movie to get rid of time and as soon as i turn the tv off my thoughts turn to Bridget in the home and her being away from me. The house becomes quiet and reality kicks in. It’s strange that when she was here i felt alone and i wanted to be on my own for some kind of life and now i have my wish i feel so desperately alone.

I haven’t visited since Saturday and she was asleep so she didn’t get to see me. Why is it that deep down i know she doesn’t miss ME so when i don’t visit i feel i’m abandoning her and feel guilty. I cannot get it out of my head that she’s still there as my wife and in need of my care and protection, but of course, that’s someone else’s role now.

At this time of night i imagine her tucked up in bed, probably asleep, and who knows what going through her mind. Does she dream? And i’m also now in bed so at least we’re together on something. I dream , i dream about her being normal and have conversations with her. It’s alarming when i wake up knowing it’s all false. Another day, on my own, missing my old life when we had each other, just a couple doing ordinary stuff.

Sorry guys, just messed up thoughts.

 

[kindred]

And so it goes on. I’ve just watched a stupid movie to get rid of time and as soon as i turn the tv off my thoughts turn to Bridget in the home and her being away from me. The house becomes quiet and reality kicks in. It’s strange that when she was here i felt alone and i wanted to be on my own for some kind of life and now i have my wish i feel so desperately alone.

I haven’t visited since Saturday and she was asleep so she didn’t get to see me. Why is it that deep down i know she doesn’t miss ME so when i don’t visit i feel i’m abandoning her and feel guilty. I cannot get it out of my head that she’s still there as my wife and in need of my care and protection, but of course, that’s someone else’s role now.

At this time of night i imagine her tucked up in bed, probably asleep, and who knows what going through her mind. Does she dream? And i’m also now in bed so at least we’re together on something. I dream , i dream about her being normal and have conversations with her. It’s alarming when i wake up knowing it’s all false. Another day, on my own, missing my old life when we had each other, just a couple doing ordinary stuff.

Sorry guys, just messed up thoughts.

I know, Peter, ordinary stuff together sounds like heaven now
Thinking of you, you still have the role of her overall protector. with love, Geraldinex

 

[Dutchman]

i do hope none of you mind me just airing my daily thoughts. It’s one way of getting some sort of grasp on the situation. I’m stuck in bed at the moment knowing i need to get up but can’t find the motivation.

I’ve had some good news. My original counsellor for the Counselling 4 Carers has started up again with my first session this Thursday. I’m hoping this will greatly help.

Today i’m helping out at the church doing maintenance, then seeing Bridget this afternoon and hopefully painting a shed if the weather holds. Keeping busy helps but there’s always a time where my stomach lurches and i get that sick feeling like being on a boat in rough seas when i think of Bridget and what’s happened.

I have to get up so here i go. Bless you all. Peter

 

[Grannie G]

Today i’m helping out at the church doing maintenance, then seeing Bridget this afternoon and hopefully painting a shed if the weather holds. Keeping busy helps

I think if you go back to the beginning of this Thread Peter @Dutchman you will see how far you have come.

Well done

 

[Dutchman]

Hi Granni G

You’d think so and i think so sometimes but when i visited Bridget today she looked at me and was trying hard to make sense of who i was. I couldn’t help myself. i was in the booth they had made and i said “ i love you very much and i’m Peter and i’ll always be there for you. I’ll be back tomorrow with some flowers and chocolates. I love you so much” But i could see in her face that it was difficult for her and i was getting choked up so i said goodbye. I want so much to make her know i love her and know i’m there for her but i also know that it’s not possible, dementia has destroyed that.

I had a chance to discuss things with the manager and they’re hoping to have quick testing of Covid next month and vaccinations, including me as a supposed volunteer, also. Let’s see!!

Peter

 

[Lirene]

Bless you Peter. I am so pleased you are volunteering at your church and I feel blessed your church family have found you and taken you under their wings. A further blessing is the testing and you as a volunteer, this again is a positive sign we have received and we thank the Lord. When the time comes, you will have to consider that you will be a ‘stranger’ in Bridget’s ‘home’ and it will take you both sometime to adjust to this new routine. Let the Lord give you patience and understanding throughout, Take a relaxed approach and consider each visit through Bridget’s eyes, let her slowly adjust to seeing you near. You have to prepare yourself not to overwhelm her, you can remember and mostly she cannot, you must let each visit progress at Bridget’s pace, not at yours. Let her get slowly used to seeing your face, your presence your closeness in her ‘home’. My heart goes with you every step Peter, we know it cannot be a road to recovery for Bridget but may be a slow road to some sort of acceptance for you. My prayers xx

 

[kindred]

Hi Granni G

You’d think so and i think so sometimes but when i visited Bridget today she looked at me and was trying hard to make sense of who i was. I couldn’t help myself. i was in the booth they had made and i said “ i love you very much and i’m Peter and i’ll always be there for you. I’ll be back tomorrow with some flowers and chocolates. I love you so much” But i could see in her face that it was difficult for her and i was getting choked up so i said goodbye. I want so much to make her know i love her and know i’m there for her but i also know that it’s not possible, dementia has destroyed that.

I had a chance to discuss things with the manager and they’re hoping to have quick testing of Covid next month and vaccinations, including me as a supposed volunteer, also. Let’s see!!

Peter

Volunteering is great Peter, I found it helped and helps me so much, first of all to be with Keith and now to honour his memory and the part the home played in it. It is a really positive step.
Warmest, Geraldinex

 

[Dutchman]

just the tiniest of things that have floored me this morning. i’ve found an old Sainsbury’s receipt in a room i barely go in to and it details items i’d never buy. Where it’s from? i turn i it over to check the date and time and guess what? it shows the exact date in August last year and approximate time that my darling wife was taken from me, the time she was driven away and i put her into her home.

Im clutching it now and i don’t know what to do. Its both a thing i don’t want to be reminded of and a connection to that awful and upsetting day. it brought so many bad memories and just when i thought i’d have a half decent day. I don’t know what to do.

 

[Woo2]

I would put it in a cupboard/drawer @Dutchman , I have a receipt for shopping I bought my dad a couple of days before he died ,the last thing he ate is on that bill and I just can’t part with it yet , daft maybe but it’s at the bottom of a drawer . I hope your day gets a little easier .

 

[Jaded'n'faded]

Peter, if you substitute the words 'care home' for 'hospital' and change 'dementia' to 'some other progressive illness', you might see this a lot differently. If she had some other illness and needed care in hopsital that you could not provide at home, you wouldn't be thinking, 'I put her in a hospital'.

Instead you would know that she had to go to the hospital to get the care she needed for her illness. You would not question it for a minute. In fact keeping her home when she needed the care of a hospital and team of workers would have been against her best interests.

Your situation is no different, is it? It's only different words - hospital/illness or care home/dementia.

 

[Melles Belles]

My mum died 4 days after my birthday (a few years ago). I didn’t pay my birthday cheque from her. Still in a drawer to remind me of her writing.

 

[Dutchman]

Hi everyone and a million thanks for the usual support and good ideas. I am truly humbled by the trouble and time you put in, not just to read me, but to give kind advice and a virtual arm round my shoulders.

I had my first renewed counselling meeting with my original counsellor for Counselling 4Carers this morning and it was great to see her again.

As I’ve mentioned before I’ve many books on grief, some useful, some rubbish. She advised that what would be more helpful is not grief information but compassion for myself. Exactly what many of you have been trying to persuade me to have and what I find most difficult.

what she suggested was a book called “Self Compassion” by Kristin Neff. I’m going to give a try and, if you’re in the same boat as me, it might be worth a read. Anyway, I’ll try anything if it helps.

Bless you and love to you all

Peter

 

[Woo2]

Good to hear your session went well , hope the book is of some help. She sounds very caring and astute . Take care .

 

[Just me]

Peter, if you substitute the words 'care home' for 'hospital' and change 'dementia' to 'some other progressive illness', you might see this a lot differently. If she had some other illness and needed care in hopsital that you could not provide at home, you wouldn't be thinking, 'I put her in a hospital'.

Instead you would know that she had to go to the hospital to get the care she needed for her illness. You would not question it for a minute. In fact keeping her home when she needed the care of a hospital and team of workers would have been against her best interests.

Your situation is no different, is it? It's only different words - hospital/illness or care home/dementia.

That is such positive way of looking at it @Jaded'n'faded

 

[Dutchman]

hi everyone

I know there’s no comparing what each of us are going through. But there is a common thread of feelings of unhappiness, misery, and all the others, examined in some detail since i began posting on here a few years ago.

But compare i do when i read the tremendously difficult situations many of us are handling on a day to day basis. My Bridget is in a care home that looks after her well, they have staff that are professional and there is literally nothing i can do to improve her life beyond visiting with flowers, chocolates, fruit and and a hopeful smile and wave.

So why should i feel I don’t really merit the amount support i’m given all the time by my lovely friends here, my counsellor and all the numerous talks i’ve had ( and probably will still need) from Admiral and alzheimer nurses. Reading what Forum members have written i genuine know what you’re going through because ive been in the depths of it myself and , as i’ve said, not exactly your experience, but near enough. The closest i can ever get to a real visit to you for support is here, just being here to listen.

I still need to have support for some time i feel, it’s just that i don’t know how to accept how wonderful you all are and the care you take to help me.

Peter.

 

[kindred]

hi everyone

I know there’s no comparing what each of us are going through. But there is a common thread of feelings of unhappiness, misery, and all the others, examined in some detail since i began posting on here a few years ago.

But compare i do when i read the tremendously difficult situations many of us are handling on a day to day basis. My Bridget is in a care home that looks after her well, they have staff that are professional and there is literally nothing i can do to improve her life beyond visiting with flowers, chocolates, fruit and and a hopeful smile and wave.

So why should i feel I don’t really merit the amount support i’m given all the time by my lovely friends here, my counsellor and all the numerous talks i’ve had ( and probably will still need) from Admiral and alzheimer nurses. Reading what Forum members have written i genuine know what you’re going through because ive been in the depths of it myself and , as i’ve said, not exactly your experience, but near enough. The closest i can ever get to a real visit to you for support is here, just being here to listen.

I still need to have support for some time i feel, it’s just that i don’t know how to accept how wonderful you all are and the care you take to help me.

Peter.

Please just keep posting Peter, it helps us so much too. With love, Gx

 

[Lirene]

Bless you Peter,. We are put onto this earth to help one another through the torturous paths we each have to tread throughout our lifetime. All these people who help tuck you under their wings to support and guide you gently, as you in time will support and guide others. We are a network of helpers brought by the Lord. You keep speaking and we will listen.
My prayers for you and all xx