42nd day in hospital, now swollen feet and ankles...?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Loopiloo, Jan 3, 2011.

  1. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,124
    Kent
    Try not to fear the unknown Loo because you might fear unnecessarily. Just be grateful for the good times and if any bad times are on the horizon you will face them when they come, if they come. xx
     
  2. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    Thanks for your wise words, Sylvia. That is all we can do, isn't it; face bad times when and if they do come. Not use up valuable energy anticipating them.

    I am very tired tonight. The person visiting to advise me about finances had someone phone me to say she was running late and would be half an hour later than arranged, then was a hour late. She was here for almost two hours but I'm not sure if I am any the wiser. Some of what she said conflicted with other information I have been given or sourced.

    I have been going over it again this evening but, ah well, it can wait until another time. Tomorrow is another day. I'm ready for bed now but, like you said somewhere, if I go now I'd be awake in the early hours and not sleep again. :(

    Loo xx
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,124
    Kent
    Dear Loo

    Some of these people are so up their own backsides they haven`t a clue about the level of stress you are under and feel it`s quite acceptable to say they`ll be half an hour late and then keep you waiting twice as long.
    It does make me cross.
     
  4. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    #304 Loopiloo, Feb 18, 2011
    Last edited: Feb 18, 2011
    I wrote that on Monday and then the not so good days since.

    One visit I found Henry half way across the sitting room floor, wobbling like a jelly, his zimmer by his chair about six feet behind him. He turned as I went in and tottered badly. When I brought the zimmer to him and asked him to turn around and go back to his chair he was nasty and swearing although low key with others there.

    He was convinced he had not had his cup of tea and was heading for another man's cup on a table beside him. I asked another man who assured me Henry had his tea, some cups had been cleared earlier. But would Henry believe me when I assured him of that.... :eek: Just became more verbal. :(

    As a distraction I gave him a sugar free mint and he said "I would die without that, I'm starving" (They also had a slice of birthday cake with afternoon tea, the third birthday cake this week) Eventually I got him calmed down a bit, but not easy.

    Today when I went in he was in the other sitting room which seems to be mainly the ladies, and being guided out with his zimmer by a nurse. He had that dementia expression and I sensed all was not well. He was arguing with the kind and understanding nurse, started to become verbally aggressive with her. Went on and on and I told him to behave himself.

    She said he had spilt his tea and a nurse had gone to his room to fetch another pair of trousers to change into in the toilet next to the sitting room. Rather than have him "walk" back to his room. (I thought the walk would have done his muscles good, too much sitting, and I'm not sure he is still having physio)

    It was obvious he had not spilt his tea and later the nurse said he had been taken to the toilet earlier but have wet the pad in the process. One of the ladies in the sitting room had called her.

    He was still "agitated" when the nurse brought him back and it continued as we sat together on the sofa; I lightly said you are in a bad mood today. He said "No b****y wonder! I've never been taken to the toilet by a woman in my life! I go by myself!" He doesn't know where any of the toilets are, and over three months has gone off with nurses as meek as a lamb. (although that's when I visited, who knows at other times, but when I have asked they have said he is "good")

    The nurse asked what my name was. Earlier she had asked him, saying I would soon be with him, but he could not remember my name. Later when I asked him my name he said it instantly.

    Perhaps he only remembers it when he sees me. He forgot our daughter's name when she was last here and visited, although knew who she was. (all going well she is down for two nights next weekend)

    I was sitting thinking I must cherish the "now" as who knows when he may begin not to recognise me.

    It was a difficult visit, he kept muttering and saying rude thinga about another man. He also has dementia and has been cursing and swearing each visit, which sets Henry off. Possibly that is why he had been taken into the other sitting room where mainly ladies sit. A few men.

    Perhaps it is just one of those dips that happen then plateau. Perhaps his blood glucose is high - too many birthday cakes. Perhaps, perhaps.... :confused:

    His speech was very poor, slurred, could barely make out what he was trying to say, yet was fine on Monday. I noticed he had bad breath which he does not normally have, maybe something going on causing the agitation, verbal aggression. Although two periods of the same thing (bad breath, aggressive) when in the other hospitals, and his glucuse level was very high.

    I am not visiting this weekend, thought I'd give him a couple of days and see if he settles.

    Selfish although it sounds, I also need a break, have been out every day and painful. Plus doing a lot of phoning concerning financial advice, a lot of working out finances, and that going through my head all week. Have a feeling next week could be more phone calls and visits to me once the social worker returns from her holiday.

    Six people have been moved out of the rehab hospial this week to care homes, four to one nearby, another two to more distant care homes.

    Sorry, blethering too much. Thinking as I write, and too tired.

    Katherine, if you read this, I hope you have a better visit with your Mum this weekend, that she is fairly fine and that you feel more reassured about the care home.

    Love
    Loo xx
     
  5. Helen33

    Helen33 Registered User

    Jul 20, 2008
    14,697
    Dear Loo,

    You sound shattered and it isn't any wonder. I hope you do get a good rest from the whole thing and just relax and chill out.

    Love and a (HUG)
     
  6. piedwarbler

    piedwarbler Registered User

    Aug 3, 2010
    7,188
    South Ribble
    Loo, dear Loo,
    A very sensible decision not to go visiting today. You sound tired. How wise of you. I might just take a leaf from your book, you know. Was planning to visit today but find I am exhausted!
    Take care and hope you feel stronger. You are every bit as important. Lots of love x
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,124
    Kent
    Dear Loo and Pied
    It`s good to see you both know how to pace yourselves. It`s the only sensible way to see these trying and very stressful situations through.
     
  8. piedwarbler

    piedwarbler Registered User

    Aug 3, 2010
    7,188
    South Ribble
    Thanks Sylvia, I hope Loo feels less bad thinking we are both in the same boat. I'm fighting the guilt feelings. :eek:
     
  9. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    #309 Loopiloo, Feb 20, 2011
    Last edited: Feb 20, 2011
    Thanks for your replies.

    Helen, relax a and chill.. what's that?! :confused: :) I have forgotten! I think the last time I did that was at our daugher's wedding almost two years ago.

    When Henry had had enough my grand-daughter helped me settle him in our room and I was resigned to sitting with him, and thankful that I had steered him through the day and he had been "good". But then the warning signs appeared and he truly had had enough. But I was persuaded to go down to the evening reception for a wee while. Henry also said he would be fine watching TV. After dithering and him getting irritated saying "Just go!", I went.

    I felt guilty but must say I did have a wonderful time! I felt I was "me" for the first time in years.

    But like Cinderella I stayed just a wee bit too long and when I left the reception I found him at the main entrance of the hotel in his slippers about to go out into the extensive grounds looking for me! :eek:

    Then when I got him upstairs, settled in bed, and started packing our case for departure next day, he thought he was in hospital and I had come to take him home. Said I needn't have bothered that night, he could have waited until the morning. Although he said "I don't think much of the doctors here"... I wonder what that was about. :confused:

    Pied, glad you wisely stayed at home instead of visiting your Mum, hard although that was for you. As Sylvia said, there is a need to pace yourself. I have not been doing that, and suffering the consequences.

    Hope you have felt a bit better but probably not, but you would have felt more unwell and exhausted had you made yourself go. You need to rest and lots of it. Take care.

    I don't too feel guilty (just a wee bit) about not visiting this weekend as Henry is unaware of what visiting is, and also lives only "in the moment". He wont be sitting waiting for me and disappointed when I do not appear.

    I do feel guilty about not achieving all - well, some - of what I intended this weekend. I have been "doing" but not what I should have been doing. Instead I have been lethargic, very depressed and feeling lost and alone, and grieving. It is totally impossible to lay everything aside in my mind, and I just cannot come to terms with it.

    I think over the last three months with Henry being so ill in the hospitals, and the terrible decline in dementia plus the physical decline I have been so wrapped up in worry and concern about him, his vulnerabilty, feeing protective, and much more. Somehow the reality of what life was before he fractured his hip became rather fudged around the edges. How h*****h life had become over the years, merely an existence, and the last year very bad, hanging on grimly by my fingertips.

    It was finding Talking Point and all of you that really did save my sanity and stopped my fingertips from letting go.

    I haven't really taken in that I have had a few months free, although filled with other things, of the daily shouting, swearing, cursing me, blaming me, telling me to F*** off umpteen times a day, and evening, the attempts at physical aggression, and all the rest of it. I've been totally focused on Henry and what he has been going through. But not that side of him. More his vulnerability, and I have had in my mind the Henry he was a long time ago.

    This is very muddled, I know. Perhaps it is part of the struggling to try and accept the changes and him having to go into a care home, because added to how he was with dementia there is now the physical loss of abilities.

    Those of you who have been through this know what I mean. So I'll shut up.

    I hope Elaine does manage down next weekend although we wont have much time together, her arriving late Friday, away all Saturday at her conference, and leaving for home Sunday afternoon. But it will be good to have her here and to visit Henry together.

    I cannot talk to her about the husband and wife aspect because she cannot see it from that perspective. She loves her Dad, I love my husband. But we both love him and want what is best for him.

    I wish that could be him coming home. But I have thought and thought and thought it all through from every angle, I have read on TP of others experiences, and spent hours last night into the wee sma' hours reading Sylvia's thread prior to Dhiren going into care. I have thought of my abilities - or loss of them - and I truly do know that if Henry came home it would all fall apart within a very short time. What I want to do and what I can do are quite different and I have been thinking of the reality, the practicalities.

    I suppose this feeling of failure and guilt just has to be battled with and hopefully somewhere ahead I will come out the other side. But at this moment in time I cannot see that far ahead.

    Sorry for blurting all of this out, I didn't intend to do that. It is not self pity but a struggling to accept the realities and practicalities of our situation as it has now become. All mixed in with the emotional side of it. I guess it is something we each have to find our own way through. But thanks for listening - if you are still with me.

    My gratitude, appreciation and thanks

    Love
    Loo xx
     
  10. Christin

    Christin Registered User

    Jun 29, 2009
    5,038
    Somerset
    Still with you Loopiloo. And yes, we understand completely.

    When we visit for short periods, FIL is bright, alert, staff say he is eating, and sleeping better. How is it that two of us couldn't manage? And yes it crossed our minds that maybe we could have coped for a bit longer but then reality set in and we see that the staff work shifts, they go home, they are able to go out. When you care 24/7 all that is so limited, you give up your life, and you are emotionally and physically drained so that even if you have a couple of hours you can't really enjoy them.

    Not necessary :D
     
  11. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    Hi Loo

    I've been following this thread from the start but never posted.

    It sounds as though the old "guilt monster" is twisting you around his little finger and has absolutely no right to do so. You have, are doing and will continue to do your very best for Henry, anyone reading this thread will agree.

    I too had the extremely hard decision of having to move my lovely dad into a care home following an admission to hospital. It was one of the most harrowing and upsetting times of my life but deep down, I knew, in my mind that it was for the "best". My dad passed away in his sleep, two months after being in full time care. I knew that for the last part of his life, he had food, company and more importantly was safe.

    Loo, don't doubt yourself. You have done absolutely the right thing for both you and Henry. Give the guilt monster a really hard kick and send him off somewhere to lick his wounds.

    You and Henry are both in my thoughts, as you start to walk a new path together.

    Love Carina x x
     
  12. Nan2seven

    Nan2seven Registered User

    Apr 11, 2009
    2,525
    Dorset
    Dear, dear Loo,

    I so know where you are at to-day. "Very depressed, and feeling lost and alone, and grieving." It's a hellish place to be. We will get through this, Loo, and look back on it and wonder how we pulled through. For now, we shed our tears over things like an old black and white photograph, a no-longer-touched pot of marmalade and clothing hanging unused in the wardrobe - and hope that no-one telephones us or rings the doorbell for the next five minutes.

    Thinking of you, Loo, and sending love,
    Nan XXX
     
  13. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    Oh Nan, you put it so well. It is hellish. I see Henry's coat and jacket in the hall, his watch removed in A & E lying on the sideboard. I open a kitchen cupboard with cereals and an unopened jar of coffee essence, a packet of unopened oat cakes, Henry being on a diabetic diet. I face his empty chair, and so on.... you know how it is.

    It is a living bereavement and you do have to go through a grieving. But I expect you are right, we will get through it as many before us have done.

    Thanks, and I am very often thinking of you.
    With love
    Loo xx
     
  14. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
     
  15. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    Thanks for writing Carina, and for reading. I am so sorry about your Dad and can appreciate how harrowing and upsetting it was for you.

    I know that in the hospital where Henry is he is well cared for and fed, and most importantly he is safe. I hope in a care home this will also apply.

    At home with our bathroom and bedrooms upstairs, and my own impaired mobility, he would be much more at risk which has been a particular concern for both myself and my daughter. His awareness of danger is nil.

    Like you, and many others, I *now* know the decision is the right one although it has taken me some time to fully acknoweldge that. As you say, the guilt monster. I shall work on that...

    Thanks for your thoughts, it is a new path to walk together, yet separately.

    Love
    Loo xx
     
  16. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    Loo, my dear girl, you are beset by demons, when the thought that you might possibly, perhaps, maybe, with help have managed to keep Henry at home a bit longer. Then you are beset by the guilt monster when you know what the only possible plan of action has to be.
    I think I might look into a form of demon casting classes so that I could help my friends. :)
    It is a sign of how deeply you care for Henry that makes the choice you have made hard to bear. I, like you, am intensely fond of my daughter, but she cannot see that the husband I moan about is also my friend, soul mate, lover, life partner and sworn enemy sometimes, because he is her dad.
    Sleep well my friend and use your time wisely, which does not mean to the detriment of your physical or mental health. Maureen..x.
     
  17. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,119
    Female
    Scotland
    Thanks for all you wrote, Maureen.

    I know exactly what you mean.

    Well, today's visit was different again, even although it showed even more lost to dementia.

    I found Henry in the sitting room on his own, most unusual, and helped him move to the two seater as there are tables between the individual chairs. He was all smiles, repeatedly saying how lovely to see me, five times said "I love you" followed by a kiss and a snuggle up to me! :) Such a change from last week's visits when he was agitated, verbal towards the nurse.

    Yet again (several times over last week) he asked me where I lived, didn't know our town, how far away was it. He asked where abouts in the town, I said don't you remember the address and he said no. When I said it he replied "Ah yes, that's it" Asked who my neighbours were - my neighbours, not "ours".

    Several times he said perhaps he could come and stay with me for a wee while, was their room. Said he had no bedroom here. Pointed to a chair nearby and said "That is where I sleep". He never remembers his hospital bedroom and I think because he is not there between getting up and going to bed.

    He was relaxed and calm. Then after talking about the view of the snow covered hills he said " I have not go to anywhere. Because I can't" I wondered what that was about. Then "it is alright here", a few more mentions of our home town (but not our home) and then, with a shrug, "I'm alright about it, I don't mind now".

    I wished I could have a peep into his mind. Somewhere in there is his own logic trying to work things out and come to terms? Or am I being fanciful.

    Strangely I did not feel sad, but a deep sense of relief. For most of the last three months he truly has known his own home, and has been tormented and despairing about wanting to come home. But this last week or so he seems to have forgotten home. It is me he wants to be with. But he isn't agitated and despairing about it.

    Of course everything could change again.

    I kept wondering where everyone was, Henry alone in the sitting room and only one woman reading a magazine in the one next door where the ladies usually sit.

    Then they began to appear, some saying "You should have been there, it was great" and "You would have enjoyed it". There had been a concert in the hall, great acts, music and singing.

    If only I had arrived promptly at 2pm. But I first went to the bank and then the post office.

    So why was Henry left alone, I felt quite annoyed. Had he been asked and said no? Had he been alseep? Or did one of the carers remember I would be visiting soon.

    Anyway, Henry was happy which made me happy. Heatbreaking that he has already, so quickly, forgotten our home which he has been talking about for months, often head in hands in despair, tears. Seeing his distress has been awful.

    But yet there are many heartbreaks over the years, aren't there. We have all experienced them. Lost memories once shared, bit by bit all that meant everything to both of you gradually slipping away into the fog.

    I am now thinking if the months of non-stop talking about coming home is ending, then it may make the transition from the lovely, safe hospital he is in to a care home easier for him.

    Or will the hospital become his memory of "home" and the move re-start the agitation and confusion.........

    I am expecting a call from the Social Worker tomorrow or Wednesday.

    Love
    Loo xx
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,124
    Kent
    Dear Loo

    I do hope Henry`s transfer from hospital to nursing home goes well. Your visit sounded good . It helps so much. xx
     
  19. Contrary Mary

    Contrary Mary Registered User

    Jun 11, 2010
    1,895
    Greater London
    Hello Loo

    No, I don't think you are being fanciful. I have often thought that about Mum, that there were things that she was just unable to communicate. I hope that you can have a productive talk with the SW before too long.

    I am heartened to read this. I just hope that things work out for you, rather in the manner of Sylvia and Dhiren. I pray so.

    Mary
    x
     
  20. Nan2seven

    Nan2seven Registered User

    Apr 11, 2009
    2,525
    Dorset
    Dear Loo,

    Your post has me in tears here. We both want so very much what is best for our dear husbands, want them not to be unhappy, even if that means fog and forgetfulness on their part. But it is so heart-breaking as well, isn't it.

    Mary's and Sylvia's posts sound very upbeat compared to mine. I am so sorry.

    Still thinking of you and sending love,
    Nan XXX
     

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