Lionel's Diary, by Connie

Discussion in 'ARCHIVE FORUM: Support discussions' started by connie, Jan 26, 2006.

  1. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    My thoughts are with you both. This is so hard for you, but I do hope you will find the time, energy and courage to share your journey with us all.
    Very best wishes!!
     
  2. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Connie

    I understand totally how you are feeling, taking the most precious person in your life and placing them in the hands of people you barely know brings so many emotions with it.

    It is just over a year since my Mum went into residential care and I can honestly say that, for her, it was exactly the right decision.

    We have had to put her welfare and needs ahead of ours, just as she did for us when we were growing up.

    Thinking of you

    Kathleen
    x
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    After one long week.....

    Hi all, promised update.
    Lionel was as good as gold on going into his new home. He seemed to settle fairly well, but I know refrained from saying anything to me, as he knows that he wants to do this for me, and it gives him some control.

    His mobility has improved somewhat over this week, ironic, as that is the biggest factor in him going away. I took advantage of this on Tuesday, managed to get him into the car (hurrah) and took him out to lunch. He really seemed to enjoy this. Obviously I visit him every day, and we manage to have a little chuckle together.

    It is so hard to see him in unfamiliar surroundings, but am trying to make things as O.K. for him as I can. Have even arranged him to have a glass of red wine in the evening, when the rest have a hot drink.

    But as to me, I am barely able to focus on anything other than my time with Lionel. Cannot speak on the phone, I just seem to start crying. I feel so inadequate, not guilty, but helpless. My sons are giving me every comfort they can, but I feel so alone, and responsible............and I really did not expect to feel like this.

    Still, if it is best for Lionel, then I must be strong. (Worst week of my life).
    Hope next week doesn't seem any worse. Apologise for my weakness, but see no point in hiding my feelings from you all.

    Take care of yourselves, Connie
     
  4. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hang in there Connie, it sounds to me like you are doing a fabulous job. In time I'm sure it will get easier.
    Hugs, Debbie
     
  5. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Just wanted to say I'm thinking of you Connie.
    Take care .
    Amy.
     
  6. May

    May Registered User

    Oct 15, 2005
    627
    Yorkshire
    Connie ,
    Thinking of you and wishing you joy in your times with Lionel. Stay strong, you're doing a grand job. Hugs {{{}}}
     
  7. Eclair

    Eclair Registered User

    Nov 29, 2005
    5
    Australia
    Dear Connie

    My Mum was 88 when we moved her into care.Four years later she has left us . Over those last years the things I recall are the good times we shared,like going out for lunch,enjoying an icecream together on the beach,her birthdays,the fact that she was always happy to see us when we visited.going out into the fresh air and sunshine to look at a garden.

    Yes, there were the terrible times, when you left and found you were driving away in tears and had missed your turnoff.When you wished you could bring her home with you to be the primary carer again.But at this time I choose to think of all the small things we did together.

    What I'm trying to say ,I think, is to make the most of the time you spend together as these things will be so important to you in the future.


    I only found this site last year,just before Mum died. It was a real godsend,I think it helped me to cope in ways I wouldn't have believed possible. Knowing there are others going through the same hell ,who care and understand ,is an amazing gift.

    My thoughts are with you and I wish you strength and courage.
     
  8. Eclair

    Eclair Registered User

    Nov 29, 2005
    5
    Australia
    Dear Connie

    My Mum was 88 when we moved her into care.Four years later she has left us . Over those last years the things I recall are the good times we shared,like going out for lunch,enjoying an icecream together on the beach,her birthdays,the fact that she was always happy to see us when we visited.going out into the fresh air and sunshine to look at a garden.

    Yes, there were the terrible times, when you left and found you were driving away in tears and had missed your turnoff.When you wished you could bring her home with you to be the primary carer again.But at this time I choose to think of all the small things we did together.


    I only found this site last year,just before Mum died. It was a real godsend,I think it helped me to cope in ways I wouldn't have believed possible. Knowing there are others going through the same hell ,who care and understand ,is an amazing gift.

    My thoughts are with you and I wish you strength and courage.
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Connie,
    The sense of loss and responsibility and fear is dreadful at this time, and I found I had to work my own way through coming to terms with that. Knowing Jan was safe and cared for, and that I could go in any time, for as long as I wanted, made things more bearable. Now, 5 years on, it is all there, but I can live with it, though I still have very bad times [just coming out of one now].

    So far it has not become any easier for me, but I know what Debbie means. It becomes more manageable, so perhaps just the words need to be adjusted.

    I found that no-one could really help me out in the whole thing, but the best help I had was when friends and some family would offer to visit Jan as well. That now defines the people I think of as being close friends/family. Those who have not visited I consider not really worth doing much with, an exception being a second level of person who still asks about Jan, and asks me to tell her they care, when I next visit. There are remarkably few of these. Most just don't talk about her, perhaps to spare me. I rarely let them get away with that.

    You need to keep your head down and concentrate on yourself [very important!!!] and on your new times with Lionel.

    Isn't the hardest thing their being so good, trying to spare us. I often wished that Jan would be really evil to me, but my girl was never like that.
    Weakness? What weakness? You are doing one of the most difficult things anyone ever has to do and that takes massive strength.

    Safety valves are de rigeur however, and there is no better one than TP.
     
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Connie, the hurt and loss you feel must be awful right now. Give it some time, you did the right thing, enjoy your time at the home with Lionel and gradually you will find you will be able to do things at home. It is so hard at the beginning and we all feel a certain amount of guilt in having made the decision. As you say his walking has improved, but Connie, it does, then it goes again doesn't it, whether with you or in the home makes no difference. If we accept that this is what happens we can stop that big stick that keeps bashing at us. We none of us can see what tomorrow will bring. If you had kept him at home, his walking may have got worse and a bad fall could have happened at home, then you would have felt bad about that instead and wished he had been in the home. Some where there has to be a point when we say OK, we have to do this now, you have done that, be at peace with yourself my love, you are a very special, loving wife to Lionel, he knows that and its important you do too. Lotsaluv and hugs, She. XX
     
  11. Robert

    Robert Registered User

    Feb 25, 2005
    44
    #31 Robert, Feb 3, 2006
    Last edited: Feb 3, 2006
    Hello Connie,

    I could'nt decide if I should post a reply. It is so hard to know what to say.

    Yes, placing a loved one into care, for most of us is the worst day of our lives and knowing there was probably no alternative does not help. The realization that our lives have changed for ever and the accompanying loneliness come like a bolt out of the blue, for some reason I had not contemplated that aspect.

    My wife has been in an EMI care home for one year and three days now. I take great comfort in daily visits and preparations for same, more so if I can take her out in the car, when for a few hours we are together again. Life is dramaticly different, but there are still pleasures to be shared and cherished. You've acted out of love Connie and done your very best for Lionel. Enjoy the happy times to come.

    Take care,

    Robert.
     
  12. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Thanks for being open and honest, as always, Connie.
    I hope that this diary will be as cathartic for you as it is helpful for us: the more points of reference we have on this journey, the less lonely and bizarre it is.
    A glass of wine never seems to taste quite right when you sip it by yourself - just think of us, who are doing the same tonight, and let us provide you with a bit of 'virtual company'.
    Hugs and best wishes!
     
  13. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dear Connie
    so sorry that you are having a rough time at the moment,knowing you ,you will come through it.
    I wish I could give you more support as you have given me ,I can only think of you and hope for you.
    I am pleased to tell you that I have climbed out of a black hole again and feel more able to carry on, and I thank you for your concern.
    Love
    Norman
     
  14. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Connie's dilemma and despair

    I really do not know what to do. Lionels care home have been saying he was not settling in the evening. I switched some of my visiting to include 6-8pm.
    Apparently he was O.K. during the day, and I have taken him out and he has returned and settled easily.

    I was concerned on Monday, as after his CPN visited him, and was informed that he was unsettled during the evening, she switched his 'diazapam' to 6.00pm in order to help him settle. As this medicine was never prescribed for "aggitiation" I did have my misgivings, but went along with it.

    Upon visiting yesturday evening, having been in for 2 hours nearer midday, I was informed Lionel was in a "stroppy mood" with the staff. He did seem a bit down, but was quite settled when I left at 8.00

    Early tonight, 5.30 phone call from the home "was I visiting as Lionel was being aggressive towards the staff"..I fled to the home, Lionel was quite calm and happy to see me.

    The man they are describing to me is a total stranger, even when he was in the EMI unit, which he hated, he was not aggressive, and the staff said they would welcome him back..Indeed I don't know anyone who does not warm to dear Lionel.

    I HAVE BROUGHT HIM HOME WITH ME TONIGHT, have no idea what will happen tomorrow, but have a few issues to address...............I really don't think he is as bad as they paint, and surely if he is, they must be trained to deal with this.
    Wish me luck for tomorrow, as I think I will be keeping him at home, and will have to get some agency help in. So angry tonight, Connie :mad:
     
  15. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Connie,
    You and Lionel are in my thoughts and prayers.
    Debbie
     
  16. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Connie,

    Now what was it you said to me the other week? Deep, breaths......
    Right, do not make any hasty decisions tonight. It sounds to me as though you need to have a meeting with the CPN and the Nursing Home manager.
    What do the staff term as aggression? Have they identified a trigger for the 'aggression'? Is it directed at any particular member of staff (is someone not approaching Lionel in the right way?) What are they doing to try and work with Lionel? I agree, if the Nursing Home takes people with dementia then there must be strategies in place.

    I hope that you have a peaceful night. You cannot do anything until the morning. Thinking of you, and sending a hug.
    Amy
     
  17. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Connie, what a strange turn of events.
    I hope you get more support from Lionel's CPN tomorrow than you've had from the nursing home.
    I wish I could say something helpful - just thinking of you both and keeping my fingers crossed that you have a reasonable night and some acceptable solution tomorrow morning.
    Take care!
     
  18. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Dear Connie

    After my Mum died various things I was looking into (not complaints about the home but other stuff) led me to have sight of the EMI Nursing Home notes and Nursing Assessment notes. I discovered there were many instances when Mum was agressive towards staff and other residents that I did not know about. The home dealt with them without recourse to me. They did inform me when Mum was unwell or had the doctor etc. There were people in Mums home that showed signs of verbal and physical aggression daily but the staff put up with a lot because for some of the residents it really was a place of last resort the next step would have been one of the reamining long stay hospital with permanent sedation which they did not want for their residents.

    When one of our loved ones have to go into care surely it is for the home to deal with all the problems and issues so that we can get our relationship back with parents and partners and have quality visits with them without having to worry every time the phone rings and having someone say that they cannot cope. Hopefully in the light of day you can get these issues sorted with the home and the right path sorted for yourself and Lionel - maybe even a direct payments package of care at home and rolling respite if it turns out that the right services for Lionel are not available in care?
     
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Oh Connie, I'm so sorry to hear your news.

    I'm not going to help much here, but I want to give some observations from my 4 years of visiting Jan in her home. Jan sounds so much like Lionel in many ways, characterwise and in the horror of the condition for the partner.

    When one visits a care home on a daily basis, one gets to know the other residents quite well, and also their relatives - the ones who visit, that is.

    All residents of a care home have their bad times, and their good times. Jan has had her diazepam timings adjusted to curb her agitation, and medications have also been changed over time, in types and dosages. I regularly ask her GP exactly what regime is in place at the time, and why.

    There is a lot in a care home to unsettle the resident, even if the dementia were not unsettling enough as it ebbs and flows, sometimes on a minute by minute basis. The care home is an unfamiliar place, the staff are strangers, the food is different, the freedom and lack of freedom difficult to come to terms with, the interactions with other residents uncertain, the abilities of the staff are varied some having more empathy than others.

    When a resident gets agitated it can be very difficult and it happens to the nicest of people. I've seen staff taken to hospital because they have been struck by a resident - and of course the one thing they can not really do is protect themselves; the most they can do is withdraw, and that may leave the resident at risk.

    I have learned not to judge the staff in such situations. I've been the subject of agitated residents myself and it is not pleasant. I find that voice intonation and heavy lying helps a lot, but then I will not have been on duty for 8 hours when it happens.

    If you want to talk in detail, do please PM me.

    It is undoubtedly a horrible situation. The medication does, at different stages, make the difference between being able to manage, and not.

    Take care!
     
  20. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Friday: 10-2-06

    Hi all, well Lionel is now at home with me. Did I throw in the towel too soon?
    Personally, I do not think so.

    In the two short weeks Lionel was in this home, I have had to take him to the dentist for neglect with his brushing, causing a gum infection, and a visit to the doctors for seboric dermatitis of the scalp. Neither of which were a problem two weeks ago.

    This, coupled with the accusations of aggression, were too much. Lionel's quality of time is NOW, not whilst I pussyfoot around the carers feelings in the home.
    I hold my hands up, I chose wrongly, so I must put it right. I just wish I had trusted my gut feeling, but I so wanted everything to be O.K.

    I will now have to try a care package at home, in any respect it cannot be any dearer than the home, and I feel that is the least I can do for Lionel, considering what I have put him through. (Thank goodness for memory loss).

    I know that Lionel will have to enter a home, sooner or later, but as he has accessed three respite homes in the past, never complaining, and all homes saying they would take him anytime, I do think it was, WRONG HOME - WRONG TIME.

    Will close diary at this point. would not like to put anyone off, there are some really good care homes out there. Love to all, Connie
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.