Dementia’s journey

[blackmortimer]

Do you think it might be partly guilt and partly not wanting to tread on your toes, so they keep away from the subject much as in the case of bereavement people often don't what to say other than the usual platitudes and so the bereaved person finds themselves in a way"shunned" simply because people are too embarrassed? I might be way off beam so disregard me if you will. However, I think you've got enough to worry about and don't want a family feud just now. So why not give them the benefit of the doubt?

As I say please tell me to shut up and go away if I'm out of order!

God bless,

 

[Old Flopsy]

Hi @blackmortimer @Dutchman @DesperateofDevon and all you lovely people. I have been visiting every day but yesterday OH went to hospital following a fall and showing unusual aggression to the carers. He is having lots of tests so it is a big worry.

 

[Dutchman]

Really sorry to hear that @Old Flopsy. Please keep us updated. I dread phone calls from the home as it’s usually bad news. Now Bridge is up and walking again she’s bound to fall sometime.

Thanks for the advice @blackmortimer and I think you’re right. I’m reminded of a quote from Romans that says, more or less, that we shouldn’t judge others for the things we also do or don’t do. True, but so hard to it into practice.

How is Margaret? Must be a constant worry for you. Please allow yourself to cry, be anxious, be distraught in your memories and accept it’s all out of your hands and all you can do is just be there for her.
I pray for peace for you

peter

 

[blackmortimer]

Margaret seems stable, @Dutchman. She seems to be taking enough nourishment and liquid to keep some kind of balance. I try to tell myself it's out of my hands but it's so difficult to throw off the role of carer and leave it all to the professionals. I think I'm getting better at it but I'm not by nature an accepting person.. I seem almost without thinking to snap into action, needing to do something - anything - probably because that's how it was for so long when she was still at home. She doesn't seem to have the strength, or the will, to get out of bed now perhaps because of the falls that she had or maybe just the progression of the disease. I don't know, neither do the staff so I just accept it. As you so wisely say, all I can do is be there for her. I was going to have a day off but the weather's so dreary that I'm not up to the gardening I'd planned so I'll visit today and perhaps have tomorrow off assuming it's brighter.

Glad to hear Bridget's walking again. You must be relieved. God bless and thank you for your prayers.

 

[blackmortimer]

Hi @blackmortimer @Dutchman @DesperateofDevon and all you lovely people. I have been visiting every day but yesterday OH went to hospital following a fall and showing unusual aggression to the carers. He is having lots of tests so it is a big worry.

I suspect aggression towards carers is par for the course, @Old Flopsy. When I was visiting Margaret yesterday there was a terrible kerfuffle in the corridor outside with one of the residents effing and blinding away at the carers about some shortfall in the service and also banging her zimmer frame against to doorway or something of the sort making a terrible racket. The carers were absolutely marvellous at calming the situation down. I asked what it was all about and they just smiled and said something to the effect that it was just the dementia nothing to worry about. of course a fall is always worrying and I hope all will be well. The upside I suppose is that if it encourages them to do tests it can lead to a more accurate diagnosis and from there to more targeted medication.

Thinking of you. God bless,

 

[Dutchman]

Is there no comfort to be had anywhere? In the stillness of this afternoon I try and rationalise, get some perspective on the whole situation.,

I try and see things from Bridget’s point of view in that she doesn’t know me and is probably quite content on her little world. I should be content also that she’s this way. I try and imagine a typical day if she was back here with me and know that life would disintegrate rapidly. And that would be selfish.

I imagine another person living here with me for another chance of companionship but no one could take her place, and that too would be selfish.

I go round and round like this hoping for a place I can rest easy but the underlying problem is that I miss what we had and no amount wishing and hoping is ever going to get it back. I’m lonely for her. She’s surrounded by activity all day, totally cared for and oblivious to my sadness

Where do you find comfort? Any suggestions?
Peter

 

[kindred]

Is there no comfort to be had anywhere? In the stillness of this afternoon I try and rationalise, get some perspective on the whole situation.,

I try and see things from Bridget’s point of view in that she doesn’t know me and is probably quite content on her little world. I should be content also that she’s this way. I try and imagine a typical day if she was back here with me and know that life would disintegrate rapidly. And that would be selfish.

I imagine another person living here with me for another chance of companionship but no one could take her place, and that too would be selfish.

I go round and round like this hoping for a place I can rest easy but the underlying problem is that I miss what we had and no amount wishing and hoping is ever going to get it back. I’m lonely for her. She’s surrounded by activity all day, totally cared for and oblivious to my sadness

Where do you find comfort? Any suggestions?
Peter

I find comfort in helping at the home where Keith died, and in coming on this forum. The humanity and truth of your posts gives great comfort thank you.
Kindredx

 

[blackmortimer]

I retreat into religion. As I think I have mentioned before, I was brought up in the Anglo-Catholic tradition which, following the smash and grab raid by Pope Benedict in the wake of the C of E's decision to consecrate women bishops has rather faded away. So I don't attend Church but I do find consolation in the spirituality I was exposed to as a boy and young man in the 1940s and early 50s. To us, religion was personal, not corporate, and the words of ancient prayers and liturgies a valuable resource in times of stress or grief. So I take refuge there,. I say a few Lord's Prayers and Hail Marys or whatever and hope to feel better. Sometimes I do, sometimes not, but I recall the words of a parish priest I knew back in the day - "prayer isn't a penny in the slot machine"! More seriously I pray for all of you and I pray for Margaret's soul. I try and remember all the teaching about suffering and death or at least those bits that actually listened to and generally it gets me through the night.

It's not for everyone, it's heavily culturally conditioned, and (another quote from my youth) it's rather like high explosive - needs handling very carefully!

God bless

 

[Dutchman]

Hello everyone @blackmortimer @Pusskins @Grannie G @Old Flopsy @update2020 and anyone else that follows me sometimes.

Another day full of worries and sadness. I’m trying to be upbeat but can’t move forward at the moment.

I’ve got a probable surgical procedure coming up which means I won’t be able to drive for two weeks and therefore not see Bridget unless I can arrange lifts from people. I know she won’t know ( or will she?) but I’ll feel I’ll be letting her down. I wish I could be assured that this isn’t going to upset me but it will, I know it will.
She had an “assisted fall” yesterday when she was assisted to the ground by carers after stumbling. She’s ok. When that phone goes from the home I panic.
Peter

 

[blackmortimer]

I really don't what I can say to help except I know exactly how you must feel. Having got into a pattern of seeing Margaret every day I feel I must keep it up even though I doubt if she knows who I am. I suppose I do it for my own sake and even when I decide to give myself a day off I feel bad about it. I can only say you must look after yourself and if you need surgery you need it so you can't feel guilty about it. Once you have an appointment you can perhaps make some arrangement e.g. for lifts or for someone else visiting. Until then perhaps best to concentrate on the now? Carpe diem and all that....God bless

 

[update2020]

Our care homy has been locked down to visitors for some weeks now and although I have applied for essential care giver status I have not got through the bureaucracy yet. I think we have both been 'reasonable' and done what we can but sometimes there are 'acts of god' that take things out of our hands. I do hope that your surgery goes well and that you recover well too. The best thing you can do for your wife at the moment is to look after yourself, knowing that she is well looked after too and would probably want that for you. xx

 

[Dutchman]

I had an interesting visit to Bridget today, one which brought tears and confusion and no comfort.

Up till now Bridget has been unable to communicate in so far as she hasn’t much responded to my questions either verbally or with expressions. Today it changed.

she answered my questions with a 3/4 word sentence, She expressed herself through her face and I really believe she understood what I was saying. That part of her brain is working a little bit.

Of course this encouraged me to go further and I stupidly said “I’d love to take you back to my house to see the garden, where you sat beneath our tree “ and she said “that would be nice “. You know I nearly got her up to go to the car there and then. The feeling was overwhelming. Oh for her to be with me again, looking at her face and imagining her back home as we were. I left her and went to her empty room and cried and couldn’t catch my breath.

I went back and asked her about old stuff, about our caravan, about our bedroom and she said sadly “I don’t remember” and smiled at me and when I asked if she was happy she said “yes”. When I said I just can’t look after you at home on my own she said “I know “. Why do I do this to myself? I want so much a connection it’s very powerful.

So much understanding that I’m still reeling from the agony of it all. In many ways it’s easier when I get blank stares. This, of course, has increased my loneliness and longing for her.
Peter

 

[Old Flopsy]

Hi @blackmortimer @Dutchman and all you other lovely people.

Peter what a traumatic day for you- so much anguish to contend with. I do hope your surgery goes well.

My news is good- just had a phone call to say OH has just got back to the care home and is settled back in his room- I bet he is so relieved to get back to familiar faces and his room - I know that I am.

 

[kindred]

I had an interesting visit to Bridget today, one which brought tears and confusion and no comfort.

Up till now Bridget has been unable to communicate in so far as she hasn’t much responded to my questions either verbally or with expressions. Today it changed.

she answered my questions with a 3/4 word sentence, She expressed herself through her face and I really believe she understood what I was saying. That part of her brain is working a little bit.

Of course this encouraged me to go further and I stupidly said “I’d love to take you back to my house to see the garden, where you sat beneath our tree “ and she said “that would be nice “. You know I nearly got her up to go to the car there and then. The feeling was overwhelming. Oh for her to be with me again, looking at her face and imagining her back home as we were. I left her and went to her empty room and cried and couldn’t catch my breath.

I went back and asked her about old stuff, about our caravan, about our bedroom and she said sadly “I don’t remember” and smiled at me and when I asked if she was happy she said “yes”. When I said I just can’t look after you at home on my own she said “I know “. Why do I do this to myself? I want so much a connection it’s very powerful.

So much understanding that I’m still reeling from the agony of it all. In many ways it’s easier when I get blank stares. This, of course, has increased my loneliness and longing for her.
Peter

Peter, just to say, with you. It is a long agony for you and yet you bring your love and longing fresh to bridget every time. You are such a good man. I wish I could help. Kindredx

 

[blackmortimer]

I agree, @kindred . It's the sheer cruelty of dementia writ large. Thoughts and prayers with you, @Dutchman .God bless

 

[Jaded'n'faded]

Peter, all I can say is that I think one day in the future, you will look back on that visit as being a precious one.

 

[Cat27]

Hi @blackmortimer @Dutchman and all you other lovely people.

Peter what a traumatic day for you- so much anguish to contend with. I do hope your surgery goes well.

My news is good- just had a phone call to say OH has just got back to the care home and is settled back in his room- I bet he is so relieved to get back to familiar faces and his room - I know that I am.

Such a relief for you @Old Flopsy

 

[Dutchman]

I’ve had enough today. I was going out tonight but I’ve ducked out of it giving some lame excuse.

I keep thinking about Bridget and how she seemed so “ordinary “ yesterday. Even the staff today when I rang said she was chatting to them. Is her brain growing back? Is she becoming “normal”. I know I stupid to think this way but I’m hanging onto every morsel of hope and it mucks up my mind.

I’m so lonely for her that I would give up everything to have her back here with me. I know practically it’s selfish and I couldn’t cope on my own, but just to have her here on the sofa next to me. I just wish I could have peace about this.
Peter

 

[blackmortimer]

Don't torture yourself, @Dutchman. Allow yourself a little hope, at least that Bridget may be sort of "in remission". I have said before that one of Margaret's favourite quotes is from Gerard Manley Hopkins (the Jesuit poet of the mid 19th century) - "I greet him the days that I meet him and I bless when I understand." The "him" here is the Holy Spirit, I think but it equally applies to the (apparently) miraculous. Probably we none of us will ever "understand" but we can greet when we meet something which gives us hope, strength to carry on. So as I say don't torture yourself, accept what has been given to you and allow yourself a little peace.

God bless

 

[Old Flopsy]

@blackmortimer - those words are so moving and thoughtful. Thankyou.