Dementia’s journey

[Grannie G]

I agree with @Bunpoots @Dutchman. I wouldn`t take the risk either. I`m just pleased you had a pleasant visit.

 

[Dutchman]

I had a counselling session today. We talked about my constant attitude of me being not quite good enough and self judgement when it comes to Bridget and my emotions surrounding her being in the home.
In my head I know Bridget’s in the best place but my heart refuses to agree. I was going to see her today (I’m encouraged not to say should) but I felt unable to get enough enthusiasm for the trip. Am I lazy, a coward, selfish?
My counsellor repeatedly tells me that I’m too harsh on myself but I’m constantly thinking that I could/should do better.
My darling wife is drifting away from me and it makes me so miserable. I cannot come to terms with the fact that we don’t have a life together any more. Eventually I suppose I will be able to come to terms with it but for now I’ve just got to put up it with it.

 

[Wifenotcarer]

Just had the News that I was expecting, that OH's Care Home is now closed to all visitors until further notice, following a directive from the Care Commission. I immediately thought of you Dutchman, as I presume that shortly all Care Homes will be the same. It certainly removes the angst around whether to visit or not, but it has hit me hard. I don't feel that OH has been imprisoned, rather that I have been locked out. Now that he is well settled in the Home, I have been visiting most days and although he has his moments, in general, these visits have cheered me up no end, seeing him contented, always clean and smart and usually cracking jokes or up to mischief.

I don't know what I will do with myself, I'll miss not only OH but also the fun and laughter when I joined in with the activities and had a blether with the staff.

 

[Dutchman]

Hi there wifenotcarer.

I got the homes message last night saying do not visit and also try not to phone. Well I’m going to phone so stuff that.

yes it does in some respects take the anxiety away of visiting but, like you with your OH, I miss her like hell. I know the lock down is for the best but I’ve just had a major meltdown (sobbing into the pillow where she laid her head) because I opened one of her cupboards and got the smell of her clothes and then found so much makeup in a basket.

I don’t know if I’ll ever get to the point when I don’t get emotional. I guess it’ll always be there waiting to ambush me.

l dearly wish I could get a positive time when I’ve been to visit. Bridget won’t hug anymore, won’t show much in the way of attention to me, but then again, she has dementia so who am I kidding. She constantly wanders.

thanks for thinking of me. It’s such a comfort to know that you’re there and I can share experiences really only appreciated by a fellow carer.

peter

 

[Dutchman]

Something else I’ve thought of......depending how long this shut down goes on for, Bridget is going to really forget me. It’s bad enough when I go in every other day.

If God has a plan for me it’s getting harder to appreciate the positive. I mustn’t be selfish and think rather of the safety and health of all the residents and staff.

peter

 

[jenniferjean]

Something else I’ve thought of......depending how long this shut down goes on for, Bridget is going to really forget me. It’s bad enough when I go in every other day.

With Dementia Peter, it does sometimes leave our PWDs unaware of who we are. But that would happen whether they see us or not. There is nothing we can do when that happens. People can be visiting their loved ones every day but that doesn't make a difference. It tends to be the more recent memory that goes first.

 

[Dutchman]

Hi everyone. Now we have lock down at all homes we as carers really are having to adjust and not have even the limited communication we used to have with our loved ones. I phone each day but after the suggested isolation of 12 weeks my wife really won’t know me any more.
I’m 72 and preparing for self isolation. Also have health conditions that require surgery so God alone knows if that gets put on hold.

I pray that this catastrophe changes people, makes them more caring for each other. I have my doubts but I hold out hope.
Keep well.
Pete xxx

 

[Grannie G]

Take care Peter.

I`m sure when your wife went into residential care you thought life couldn`t get any tougher.

Little did we know.

 

[Dutchman]

Take care Peter.

I`m sure when your wife went into residential care you thought life couldn`t get any tougher.

Little did we know.

Yes I thought that living in the limbo land of Bridget being there and me here would become easier to manage. At least I saw her nearly every other day. Now, I suspect, she won’t know me when this all blows over and we’re allowed visiting again.

i phoned the home today and couldn’t resist asking if I could speak to her. She came to the phone and I got very emotional . I said I love and miss you so much, but she doesn’t really understand. I heard her say to the carer, ‘he wants to marry me’. I cried and had to say goodbye. Just the sound of her voice tips me over just when I thought I was making some sort of progress.

Grannie G, you’ve been at my side for a long time and I bless you for all the support you’ve given

Peter

 

[Grannie G]

Grannie G, you’ve been at my side for a long time and I bless you for all the support you’ve given

Thank you.

I`ve been where you are @Dutchman so I know.

 

[Dutchman]

Hi. So if it’s not enough to lose Bridget to a care home I now dream.

every night lately I’ve had similar dreams, very real. Bridget is normal as she was several years ago, we speak, she comforts me, we love each other but, she still needs to go back to the care home in the evening. I mean, talk about cruelty.
This Coronavirus isolation is going to be the death nell on any relationship we had. It was bad enough when I was allowed in now I doubt if she’ll know me at all.

my thoughts and loving kindness, my prayers and virtual hugs go out to everyone on the forum. Thank goodness we have a place to unload our emotions.
Peter

 

[Wifenotcarer]

Hi Dutchman. I too have been dreaming about my OH, mainly reliving our early married life. This is probably because I have been looking at old photographs of happier times. We certainly have had a full and varied life, with wonderful holidays, our Daughters Wedding, our own Golden Wedding. All just memories now. It is like a bereavement with my OH in 'a better place' and me isolated, home alone without purpose or much hope.

Please keep sharing and posting. It does help a little to correspond with people in the same storm tossed boat.

 

[Dutchman]

In some respects I’m happy that Bridget is away from all this awful stuff and I know that she wouldn’t ( or me) be able to cope with enforced isolation if she was back with me at home.

Then again it’s weird that I’m let off the hook for seeing her. I went to the home yesterday to drop some supplies off and waited outside. So close but I knew it would upset me if I’d have seen her through the window.
Keep as well as you can , keep posting and keep in touch.

 

[Dutchman]

Hello wife not carer. I really do feel for you, please believe me

I‘m home alone and have got bored with film I’ve been watching. How is any one of us going to get through this crisis when visiting is not allowed and slowly but surely we drift apart from our loved ones. My wife is a little lost soul now wandering the corridors and unable to communicate her thoughts.

I want to protect her so much. Take her in my arms and keep her safe but it’s only me now with those feelings. She sees me just as a good friend but by the time the crises is all over and we’re allowed visits she will have trouble even recognising me, I think.

how do we even start to say how we feel? I’ve lost my lifeline and the main part of my life. We’re lonely because our companionship has been torn apart by one of the cruelest diseases around.

im a bit afraid to sleep tonight in case I dream again of Bridget being normal and us being together.

I think the purpose we have is to try and support each other in all the ways we can think of and just open our hearts to one another. I’ve got past the stage where I hold things back. Life’s too short.

 

[kindred]

Hello wife not carer. I really do feel for you, please believe me

I‘m home alone and have got bored with film I’ve been watching. How is any one of us going to get through this crisis when visiting is not allowed and slowly but surely we drift apart from our loved ones. My wife is a little lost soul now wandering the corridors and unable to communicate her thoughts.

I want to protect her so much. Take her in my arms and keep her safe but it’s only me now with those feelings. She sees me just as a good friend but by the time the crises is all over and we’re allowed visits she will have trouble even recognising me, I think.

how do we even start to say how we feel? I’ve lost my lifeline and the main part of my life. We’re lonely because our companionship has been torn apart by one of the cruelest diseases around.

im a bit afraid to sleep tonight in case I dream again of Bridget being normal and us being together.

I think the purpose we have is to try and support each other in all the ways we can think of and just open our hearts to one another. I’ve got past the stage where I hold things back. Life’s too short.

Thank you, Peter, that gives meaning and purpose to us all. with love, Kindred.

 

[Guzelle]

I can’t visit my OH now and worry he will forget who I am. I tried to explain to him about the virus but he couldn’t understand. They won’t remember to change his hearing aid batteries I will have to keep ringing to remind them as he doesn’t think to ask them either.!
my daughter’s in-laws can’t see our 10 month old grandson as her husband has had a bypass operation.
I dream my OH is here and he has walked here from the home. He is doesn’t have dementia and I’m worried about taking him back!

 

[Dutchman]

It looks like a number of us are dreaming about our loved ones when times were normal and love was shared, compassion was felt and life was so much easier.

i wake up and get quite emotional wishing it wasn’t a dream. Why in dreams do I hear and see Bridget like she was several years ago and why does my dream alway have a need for her to go back to the home. They say dreams are there to sort stuff out but, instead , my dreams just pile on the agony.

What with all that, not being able to visit, living on our own, self isolation and the daily apocalyptic news, it’s a wonder any of us will remain sane at the end of all this.

Just keep in touch so we can have a vent for our frustrations.
peter

 

[Wifenotcarer]

Don't know if this thought will be any comfort to others but it has cheered me. The Home reports that OH is sleeping more than usual and seems to be dreaming a lot, occasionally talking in his sleep. I have chosen to believe that he too is dreaming of times past which means that he will be seeing me in his dreams. ?

 

[Dutchman]

Just received some photos taken by the home. Bridget’s in the middle of two others outside in the garden sitting on a bench.

She looks so lost and cold. I want to look after her so much but I can’t. It’s the beginning of the 12 week lock down and I’m not sure if I can manage the wait till I see her again.

I know she lives in a different world now, not of her making but because I couldn’t cope anymore. I wish I could take her in my arms and say it’s all going to be alright.

Its such a long time and she doesn’t understand many things. I’m a good friend now but in 3 months I’ll be a stranger. She won’t know about the virus which is a good thing. And she doesn’t know that I cry for her nearly every day and that hurts like hell.

in some respects I wish I’d never seen her photo. Just had to talk to someone

peter

 

[Chaplin]

Just received some photos taken by the home. Bridget’s in the middle of two others outside in the garden sitting on a bench.

She looks so lost and cold. I want to look after her so much but I can’t. It’s the beginning of the 12 week lock down and I’m not sure if I can manage the wait till I see her again.

I know she lives in a different world now, not of her making but because I couldn’t cope anymore. I wish I could take her in my arms and say it’s all going to be alright.

Its such a long time and she doesn’t understand many things. I’m a good friend now but in 3 months I’ll be a stranger. She won’t know about the virus which is a good thing. And she doesn’t know that I cry for her nearly every day and that hurts like hell.

in some respects I wish I’d never seen her photo. Just had to talk to someone

peter

Hi Peter

I can so empathise with your situation. My mum is in care home and her and dad have been togeth