42nd day in hospital, now swollen feet and ankles...?
- Thread starter Loopiloo
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Thanks Helen, Izzy and Mary.
TP is a wonderful place to come.
I have spent most of this evening reading posts and marvelling. Many people here to be admired, Mary.
Yes today's visit was fairly good. Henry was relaxed and calm even although he asked when he was getting out of this place. Only the once. One brief mention of home. Later he asked "Where do you live?" I said the name of our town and he asked where was that and how far away. How did I get there, I said I drove, he said "I didn't know you drove. Is the car fine?" Then fifteen minutes after I arrived "You'd better go now and do your shopping before it is dark". I replied that I could wait for a while yet, it was only 2.30pm.
I was tempted to ask him his address which he has always known, along with his date of birth, but didn't want to go down the "going home" route. But I thought of reading on TP how many others talk about going home, but the home in their mind is not their present home. I wonder if this is now happening to Henry.
At one point he murmered he must go to the toilet, went to get up, and I said to use his zimmer, a few inches from his knees. "What's a zimmer?" ... "That thing? I don't need that, I can walk". I'm afraid he is never going to associate the zimmer with "walking", and his mobility is hardly that.
When I said I'd get someone to take him he said he needed now, could not wait, and "I'll just do it now". I don't know if he did or not but I called a nurse who took him to a neaby toilet.
A man sitting opposite us, usually calm, chatty, didn't look well and had had a painful procedure last time I visited, we could hear him cry out from his room. He had visitors earlier on this afternoon, was very pleasant with them, but changed after they left and became agitated. He is usually in the type of wheelchair you can move yourself, with the large wheels, but today was in the type that is pushed and was trying to move it towards the door by turning the ordinary wheels.
Said he wanted to go to the toilet, I said I'd wheel him into the corridor, and then I called a nurse. She said he has a catheter, took the wheelchair to turn it around and return him to the sitting room and I think his foot, too far out of the chair, caught on the furniture.
He started screaming really profane obscenities at the nurse. Henry about to lower himself into his chair suddenly turned round remarkably quickly and said "Hey! Hey! That's enough of that!"
Another brief glimpse of the Henry that once was. A brief glimpse of another side of the usually polite cheery, chatty chappy.
It has taken me a while to realize he has dementia as he usually holds a most interesting and intelligent conversation. Until one day he said "I forgot where I left the car in the car park today and I'm scared to go home and tell my Mummy and Daddy. That is why I'm staying here".
I left them silently glaring at each other across the room, with a carer sitting beside the other man, trying to calm him down. Before leaving I managed to distract Henry and left him smiling, waving to me.
Instead of his usual why are you not taking me home he was smiling when he asked when he would see me again.
The carers are wonderful with the patients. Oh to find a care home with similar.
Love
Loo xx
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Hi Loo, I've been catching up with your posts with interest, they're never too long! I've been taking some time-out to concentrate on things here, but I see you've had quite a time of stress & mixed emotions.
Lets hope the powers-that-be can get their fingers out and organise somewhere nice for Henry, and you can move out of the 'in limbo' mode soon.
I think the waiting, for whatever reason, is a bit like trying to balance on a knife-edge...stuck there & nowhere to move to! Very stressful.
Mixed visits with Henry too, hope he's calm & contented over the weekend, that would obviously help you too, but of course you just have to take things as they come.
Thank you for making your posts so interesting Loo, they are always so easy to follow, despite the deep emotions involved. I think we all find it very theraputic to just get things written down.
Hope you're in bed fast asleep by now, it's early!
(not a lot to report here, a bit in limbo ourselves, but will continue my thread when there's anything happening.)
Take care for now Loo, sending both you & Henry my best wishes for strength & comfort. Here's a (((big hug))) to keep you going.
Lots of love, Necion.xx
Lets hope the powers-that-be can get their fingers out and organise somewhere nice for Henry, and you can move out of the 'in limbo' mode soon.
I think the waiting, for whatever reason, is a bit like trying to balance on a knife-edge...stuck there & nowhere to move to! Very stressful.
Mixed visits with Henry too, hope he's calm & contented over the weekend, that would obviously help you too, but of course you just have to take things as they come.
Thank you for making your posts so interesting Loo, they are always so easy to follow, despite the deep emotions involved. I think we all find it very theraputic to just get things written down.
Hope you're in bed fast asleep by now, it's early!
(not a lot to report here, a bit in limbo ourselves, but will continue my thread when there's anything happening.)
Take care for now Loo, sending both you & Henry my best wishes for strength & comfort. Here's a (((big hug))) to keep you going.
Lots of love, Necion.xx
Do you know, Necion, that's just what this disease suffers from. We go from one limbo to the next without following any set path, no wonder we trip up sometimes. I hope you've had a good day today Loo, sleep well. Maureen.x.
Hello Loo , Sorry 
if not been on to reply but Computer broke
fixed 3 days back
Am sorry you having a hard time Loo & that things improve soon for you both , you and Henry are in my Prayers these coming weeks
Take Care Love & Hugs Love Grove x x x x x P S Do hope you are able to find a nice C Home of your Choice
if not been on to reply but Computer broke fixed 3 days back
Am sorry
you having a hard time Loo & that things improve soon for you both , you and Henry are in my Prayers these coming weeksTake Care Love & Hugs Love Grove x x x x x P S Do hope you are able to find a nice C Home of your Choice
Hello Loo
Yes, I'm also getting the impression that she knows little about dementia. I have had social workers like this. If she is away until next week, presumably you are stuck in limbo for a bit longer. I just hope that the week goes as smoothly as possible.
Thinking of you
Mary
x
Yes, I'm also getting the impression that she knows little about dementia. I have had social workers like this.
If she is away until next week, presumably you are stuck in limbo for a bit longer. I just hope that the week goes as smoothly as possible.Thinking of you
Mary
x
Thanks Mary. I'm wondering what this week holds.... I guess it will be next week before more happens, once the SW is back from her holiday.
Tomorrow the person from 'Older People's Advice Service' is coming to advise me about finances. I have to have everything written out. Been doing that off and on and particularly yesterday. But I was probably too tired last night when I started working out what my expenditure would be, as a "single person", and my income. I can't see how I can meet the expenditure from what I calculate my too little income will be. In the end I just stopped doing it, but will have to set it out on paper today after visiting Henry. Not leave it so late and too tired.
It doesn't seem fair that a wife is left with so little when a husband has worked all his life, you have both paid your way, never made any benefit claims, and yet there are lots of people who have never worked a day in their life, and not due to health problems but self abuse, and they get so much more. I have heard about one such person who gets over £700 a fortnight, pays no council tax or rent.
But enough! Too much moaning! All things pass.
I did lay my pen down last night to watch 'Lark Rise to Candleford' - does anyone watch it? I find it so gentle and relaxing. But was upset to read that it is the last ever in the series.
Better get on, the morning flies by and I am not the fastest thing on legs. Feeling a bit odd this morning, dizzy and naseous, and hoping it passes. Must perk up to visit Henry.
Thanks.
With love
Loo xx
Tomorrow the person from 'Older People's Advice Service' is coming to advise me about finances. I have to have everything written out. Been doing that off and on and particularly yesterday. But I was probably too tired last night when I started working out what my expenditure would be, as a "single person", and my income. I can't see how I can meet the expenditure from what I calculate my too little income will be. In the end I just stopped doing it, but will have to set it out on paper today after visiting Henry. Not leave it so late and too tired.
It doesn't seem fair that a wife is left with so little when a husband has worked all his life, you have both paid your way, never made any benefit claims, and yet there are lots of people who have never worked a day in their life, and not due to health problems but self abuse, and they get so much more. I have heard about one such person who gets over £700 a fortnight, pays no council tax or rent.
But enough! Too much moaning!
All things pass.I did lay my pen down last night to watch 'Lark Rise to Candleford' - does anyone watch it? I find it so gentle and relaxing. But was upset to read that it is the last ever in the series.
Better get on, the morning flies by and I am not the fastest thing on legs. Feeling a bit odd this morning, dizzy and naseous, and hoping it passes. Must perk up to visit Henry.
Thanks.
With love
Loo xx
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Thanks for your post, Necion. Yes the in limbo and waiting is tense and stressful, but isn't it all. Part of me wants to get on with it and see Henry settled and the other part dreads it. Will he ever settle.... Cannot stop thinking about it, and still battling heart and head, going over and over 'the decision', doubting myself.
I am sorry you are also still in limbo, and your situation just goes on and on. I do feel for you.
Yes. it helps to write. Thanks for all you wrote to me, and for your best wishes and the big hug.
It is a miserable morning here, very wet, sort of matches my mood as I awoke after a restless night feeling very down. But I'll pick up as the day goes on. I hope! Depends on how I find Henry.
Thinking of you.
With my love
Loo xxx
I am sorry you are also still in limbo, and your situation just goes on and on. I do feel for you.
Yes. it helps to write. Thanks for all you wrote to me, and for your best wishes and the big hug.
It is a miserable morning here, very wet, sort of matches my mood as I awoke after a restless night feeling very down. But I'll pick up as the day goes on. I hope!
Depends on how I find Henry.Thinking of you.
With my love
Loo xxx
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Thanks Maureen, and how true. From one limbo to the next..... and the tripping up sometimes.
Love
Loo xx
Hello Loo , Thanks for your message what you said is so true ! ! , it was the Modem that had bust ! ! . The Company that am with sent me a FREE ONE that very week , good service or what ! !
Hope you feeling better & the visit to Henry went well
Love & Hugs Love Grove x x x x
! ! . The Company that am with sent me a FREE ONE that very week , good service or what ! ! Hope you feeling better & the visit to Henry went well
Love & Hugs Love Grove x x x x
Hi Loo
Just dropping in to send you a hug and let you know I am keeping up with your thread. You must be sure to rest enough and not try to do too much. If you feel sick and dizzy it might be because you need to get some rest and sleep - can you manage to put yourself first for a short while? I hope you can.
Take care Loo
Pied xxxx
Just dropping in to send you a hug and let you know I am keeping up with your thread. You must be sure to rest enough and not try to do too much. If you feel sick and dizzy it might be because you need to get some rest and sleep - can you manage to put yourself first for a short while? I hope you can.
Take care Loo
Pied xxxx
Hi Loo, How are you? Hope todays visit was reasonable. I agree with you, it is only on TP that you can sometimes release those personal thoughts/worries/fears isn't it? Without it i'm sure my sanity would be doubtful after all that's thrown at us.
Reading about your social worker visit it sounds similar to Dads first one I was at. He had to describe everything past, present, recount a 'typical' day etc. Not sure what the reasoning is but it seemd like a long winded background filler. As for finance I can't help much - am burying my head and keep telling my brother it's his job and i know he's struggling. Advice on TP has been to contact Alz society for specific help.Dad was told he would get a visit from a welfare officer but this was 2 or 3 weeks ago and he's heard nothing since.
Had a bad visit with Mum on Sat after which she slipped from chair and fell so confidence in the care plummeted and i felt those guilt feelings again. Once away realised it should have been 'tea time' at the home whilst I was there and there was no evidence of that - little worries lead to bigger ones. I know your feeling of wanting to get on and settled and dreading it too. The roller coaster just goes on and on though doesn't it? Just rung Dad and he had a better visit today - as ever just wish so much i was closer as can't get across til next Sun - it's an awful long time after a bad visit.
Hope you're feeling better. Take care of yourself Katherine xx
Reading about your social worker visit it sounds similar to Dads first one I was at. He had to describe everything past, present, recount a 'typical' day etc. Not sure what the reasoning is but it seemd like a long winded background filler. As for finance I can't help much - am burying my head and keep telling my brother it's his job and i know he's struggling. Advice on TP has been to contact Alz society for specific help.Dad was told he would get a visit from a welfare officer but this was 2 or 3 weeks ago and he's heard nothing since.
Had a bad visit with Mum on Sat after which she slipped from chair and fell so confidence in the care plummeted and i felt those guilt feelings again. Once away realised it should have been 'tea time' at the home whilst I was there and there was no evidence of that - little worries lead to bigger ones. I know your feeling of wanting to get on and settled and dreading it too. The roller coaster just goes on and on though doesn't it? Just rung Dad and he had a better visit today - as ever just wish so much i was closer as can't get across til next Sun - it's an awful long time after a bad visit.
Hope you're feeling better. Take care of yourself Katherine xx
Yes, Katherine, waiting until Sunday to see your Mum again is a long time after a bad visit. I'm so sorry to read about that. But encouraging that your Dad had a better visit today. There is just no knowing with dementia, often no two days are alike - although we can do without the bad ones which are such a worry.
I do hope your little worries dont lead to bigger ones concerning the care home. I'm dreading that stage. Don't know if I will have a choice, so few in this area now. I heard about a man who had just been moved to a care home today and it is in the next county. I do so want Henry to remain locally, paticularly to retain our own doctor.
TP definitely saved my sanity last May, I shall be eternally grateful for finding it and to all the wonderful people here.
I did actually contact the Alzheimer's Society by email re finances, they said they would get back to me in 24 hours but never did. I had forgotten about that.
Hope your week passes quickly and you regain your confidence about the home next Sunday, and have a good visit with your Mum.
Thoughts and love
Loo xx
I do hope your little worries dont lead to bigger ones concerning the care home. I'm dreading that stage. Don't know if I will have a choice, so few in this area now. I heard about a man who had just been moved to a care home today and it is in the next county. I do so want Henry to remain locally, paticularly to retain our own doctor.
TP definitely saved my sanity last May, I shall be eternally grateful for finding it and to all the wonderful people here.
I did actually contact the Alzheimer's Society by email re finances, they said they would get back to me in 24 hours but never did. I had forgotten about that.
Hope your week passes quickly and you regain your confidence about the home next Sunday, and have a good visit with your Mum.
Thoughts and love
Loo xx
Thanks for the hug, Pied, and an extra warm one to you. Also your caring and how good of you to write today. Have thought about you a lot
The sick and dizziness this morning could have been lack of rest and sleep, had a bad night with pain. Also too late in bed. Suddenly remembered I hadn't done my online grocery shopping and went on to do that too late. But needs must as knew I'd not manage the supermarket this week, and I do prefer to go and choose for myself. But a busy week.
Hoping you sleep well tonight and this second round goes better than the first. A friend of mine said it is hard to think of chemo as a friend, but nonetheless it is, although one with a sharp tongue.
I'd better get off to bed myself soon..... meant to be there by now but the clock flies around.
With my thoughts and love
Loo xxx
The sick and dizziness this morning could have been lack of rest and sleep, had a bad night with pain. Also too late in bed. Suddenly remembered I hadn't done my online grocery shopping and went on to do that too late. But needs must as knew I'd not manage the supermarket this week, and I do prefer to go and choose for myself. But a busy week.
Hoping you sleep well tonight and this second round goes better than the first. A friend of mine said it is hard to think of chemo as a friend, but nonetheless it is, although one with a sharp tongue.
I'd better get off to bed myself soon..... meant to be there by now but the clock flies around.
With my thoughts and love
Loo xxx
Hi Grove, good service indeed for the company to give you a free modem! Hope all is well with your computer now.
Yes it was a good visit with Henry today, he was calm and very relaxed throughout and it was good to leave him like that. It rubbed off on me too. Such a difference in him.
Instead of the usual asking where he was and why and when was he coming home, he again asked me where I lived and said he would like to visit me. I talked about him not being able to walk and he said "I'd like to get up and see if I can" But I talked him out of that! He said "Ah well, it's probably too far to walk to wherever you live. I shall stay where I am. It is nice here, isn't it?"
Yes it is. Such a huge difference from the two acute hospitals he spent six weeks in and was terribly distressed. The last week or so since he moved to this one six weeks ago there is such a difference in him.
He talked quite a bit about where I lived and looked blank when I named our town. I asked "Don't you remember it?", he said "No. It must be a long time since I was last there. ( 12 weeks) I wonder if it has changed". Several times asked how far, how did I get there, again expressed surprise that I drive.
His memory has deteriorated tremendously. Although he chats more to me now.
When I asked if he remembered his former home, when he was a boy, he instantly responded, talked about it, and his Dad. This is a big change, I wonder if, as many do, he is forgetting our home.
I'm surprised that instead of feeling sad I feel some sense of relief. It has been his constant wanting to come home, not understanding, his distress and confusion which has saddened me and distressed me, suffering with him. If he now is forgetting home I understand that better, as a result of reading on TP about this happening to other loved ones. I'd rather he forgot than be so distressed. That tears me apart. But you never know, do you. Next time he could be back to it all again.
He held my hand, told me he loved me, and that I looked lovely (love is blind! ) and he has not been like that for a very very long time. A quiet, peaceful relaxing visit for both of us. A lull in the being in limbo....
I finally got all my finances down on paper tonight and that is a load off my mind. Have even stopped worrying about how I will manage. I will one way or another. Just hope the person coming tomorrow is useful, if you know what I mean.
Anyway I now have all Henry's side of it detailed on paper and feel better about that concerning when someone from social services comes to do a financial assessment. Although still some things I wish to verify.
Thanks for listening. Cold and very wet here, and snow forecast not too far away.
Thinking of you all and hope you are all tucked up in bed.
With love
Loo xx
.
Yes it was a good visit with Henry today, he was calm and very relaxed throughout and it was good to leave him like that. It rubbed off on me too. Such a difference in him.
Instead of the usual asking where he was and why and when was he coming home, he again asked me where I lived and said he would like to visit me. I talked about him not being able to walk and he said "I'd like to get up and see if I can"
But I talked him out of that! He said "Ah well, it's probably too far to walk to wherever you live. I shall stay where I am. It is nice here, isn't it?" Yes it is. Such a huge difference from the two acute hospitals he spent six weeks in and was terribly distressed. The last week or so since he moved to this one six weeks ago there is such a difference in him.
He talked quite a bit about where I lived and looked blank when I named our town. I asked "Don't you remember it?", he said "No. It must be a long time since I was last there. ( 12 weeks) I wonder if it has changed". Several times asked how far, how did I get there, again expressed surprise that I drive.
His memory has deteriorated tremendously. Although he chats more to me now.
When I asked if he remembered his former home, when he was a boy, he instantly responded, talked about it, and his Dad. This is a big change, I wonder if, as many do, he is forgetting our home.
I'm surprised that instead of feeling sad I feel some sense of relief. It has been his constant wanting to come home, not understanding, his distress and confusion which has saddened me and distressed me, suffering with him. If he now is forgetting home I understand that better, as a result of reading on TP about this happening to other loved ones. I'd rather he forgot than be so distressed. That tears me apart. But you never know, do you. Next time he could be back to it all again.
He held my hand, told me he loved me, and that I looked lovely (love is blind!
) and he has not been like that for a very very long time. A quiet, peaceful relaxing visit for both of us. A lull in the being in limbo.... I finally got all my finances down on paper tonight and that is a load off my mind. Have even stopped worrying about how I will manage. I will one way or another. Just hope the person coming tomorrow is useful, if you know what I mean.
Anyway I now have all Henry's side of it detailed on paper and feel better about that concerning when someone from social services comes to do a financial assessment. Although still some things I wish to verify.
Thanks for listening. Cold and very wet here, and snow forecast not too far away.
Thinking of you all and hope you are all tucked up in bed.
With love
Loo xx
.
Thanks Sylvia. If what lies ahead works out half as well as it has for you and Dhiren it would be.... well, "good" doesn't quite express it.
Yes it would be the lesser of the two evils, although I was surprised by the relief I felt rather than deep sadness. Perhaps that will come later. But for three months it has been his torment about wanting to come home which is so unbearable. You feel so helpless to alleviate it.
I did feel better yesterday, after being with Henry. Seeing him more at peace. But I am cautious, dementia has so many twists and turns. We have a way to go yet and I still lurch between emotions and states of mind. Sometimes feeling more my self and under control, other times all over the place and depressed.
But these better days of late have surprised me as until now it has been a nightmare. Although I realize there will also be bad days, as before.
It is another of dementia's many roads we are now on, not quite knowing where it will lead us. Fear of the unknown.
Love
Loo xx
Yes it would be the lesser of the two evils, although I was surprised by the relief I felt rather than deep sadness. Perhaps that will come later. But for three months it has been his torment about wanting to come home which is so unbearable. You feel so helpless to alleviate it.
I did feel better yesterday, after being with Henry. Seeing him more at peace. But I am cautious, dementia has so many twists and turns. We have a way to go yet and I still lurch between emotions and states of mind. Sometimes feeling more my self and under control, other times all over the place and depressed.
But these better days of late have surprised me as until now it has been a nightmare. Although I realize there will also be bad days, as before.
It is another of dementia's many roads we are now on, not quite knowing where it will lead us. Fear of the unknown.
Love
Loo xx
