Swings and Roundabouts.

Discussion in 'ARCHIVE FORUM: Support discussions' started by jude1950, Sep 7, 2007.

  1. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Just to update members on our situation. If you remember my previous posts My husband had deteriorated quite rapidly these past couple of months as well as needing help with dressing washing etc he had also become very agressive. I am disabled and we reached crisis point about 2 weeks ago and he was admitted to emergency respite although he went voluntarily after a lot of persuasion by SS and CPN thye were prepared to section him if needed.
    I* have not seen him since then but my son and daughter ...his step children... have been helping me . we have found a very good care home and he has moved there today.
    All was fine he liked his room and his personal things were there he had lunch and a long walk in the grounds.
    We had a call from the new home saying that the respite home had not sent his medications with him and that his drug sheet was last entered three days ago
    my daughter went to the GP and got a months prescriptions and took them to the new home.
    when she got there Jim went into one of his rants saying he wasn't staying there ...if I cant cope put me into a home and he will go back to His house and look after himself there is nothing wrong with him....saying some viscious things about me and how he has always given me the best of everything for over 30 years ( we have only been together 10years.) His first marriage was not a happy one and he seems to confuse the two and I have always contributed half of our living expenses since we have been together Jim has not kept me nor do I expect him to.
    Sorry it is such a long post....anyway what I am now concerned about is that his eldest son is going to visit him tomorrow with Jims brothers ...they have not been in contact much over the last 10 years but all of a sudden they are experts on alzheimers disease and are telling him that he is ok and doesn't need to be in a care home!!
    I am worried sick that they will bring him home here to me I really cannot go on this way His son was told by me that Jim was deteriorating about 7 weeks ago the comment he made then was well if he needs to go into care then thats what will happen however he didn't come and see him and commented to his sister that he doubted that he would come up to the funeral if his dad died!!
    Does anyone have any experience of people being removed from care without consulting the spouse/main carer? I am dreading my step son's visit.

    judith
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Oh dear Judith, what a lot you have on your plate.

    While I don't think there would be anyway to stop your stepson from removing your husband from a care home, and taking him to live with HIM, there is no legal requirement on you to provide that care: no one can force you into a caring role (I mean of course, physically, obviously you CARE). Furthermore, I think any nursing home who was familiar with your husband's history (as I assume this one is) would want some type of proof that 1) your step son wath your husbands son (not so easy to prove on the spur of the moment) 2) that social services were aware of the change of care arrangements and that 3) as your husbands closest relative you were at the very elast informed. After all, once someone is palced in a nursing home, they have a duty of care to ensure that the person in question stays safe: they can't just let anyone make away with one of their residents. In the event that they do remove him (perhaps on the pretext of taking him for a drive) you should call emergency social services IMMEDIATELY (so find the number now if you don't have it to hand). You might also contact the home in question and warn them about possible ramifications: that will put them on notice.

    Also, and I think this is an important point, you know full well that people with dementia are chageable: it is quite likely that tomorrow, your husband will be back to being happy where he is. To be honest, I'm not sure your children did you any favours by recounting all the details of this visit, but I suppose they wanted to give you a heads up.

    Do keep us posted

    Love
     
  3. unicorn

    unicorn Registered User

    Jun 22, 2007
    12
    nottingham, uk
    I am so sorry to hear what is going on in your extended family, I too have a stepson who seems unable to grasp how serious things are going to get, keep your chin up things will work out I am sure, if not tell the son to try looking after your husband for a week and maybe he will realise how hard it is for you.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,647
    Kent
    Dear Judith,

    I`m so sorry it`s all going wrong. All I can suggest is you get the respite home and SS updated with the latest developments and ensure you can depend on them to help you act in the best interests of your husband.

    Jenniferhas made some sensible and logical observations. Your husband`s family has no idea of his condition or complications and no responsible body would release him to people who don`t know him.

    Try not to let them get to you.

    Love xx
     
  5. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    hi Jennifer,
    The Home have been pre warned about Family members who have not and have any experience of Jim's illness and that they may be an unsettling influence on him.
    We had an episode with Jim the other day when he said that he did not want to go to the new nursing home and told my son to cancel the move...The next day when my daughter went to see him he was in tears because he thought he had messed things up and couldn't go to the new Home... she explained that everything was ok and that he was still able to go there ( It is a beautiful place and not cheap I might add, I am topping up the fee's there so that he gets the best care I can find.)
    Hence my heading of swings and roundabouts it is just so unsettling when Jim has these outbursts they are quite nasty when he has them and they seem to be on the increase, I just feel so helpless really.
    thanks for listening ..I will do as you say about the emergency SS number.

    Judith
     
  6. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    You know Judith, I think in your place I would be inclined to tell my children that I simply didn't want to hear about any accusations my husband was making about me. I mean, it's one thing for them to mention things that might come back to bite you, but you KNOW (and they should too) that it's the disease talking, so to recount every nasty thing he says seems less than helpful. I can well understand they they feel the need to inform you, and of course you may prefer to know everything that he says (I can understand that too), but personally, I'd rather not know. Just a very humble opinion.

    Love
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,647
    Kent
    Dear Judith,

    I think this is a form of defense, it`s the only way he can stick up for himsef. It`s really hard for you, because it`s directed at you.
     
  8. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Thanks Jennifer. I prefer to know then forewarned is forearmed so to speak.
    I think it was just a shock to my daughter seeing him in this mood..I had told her about how agitated and aggressive he gets but this was the first time he had shown that side to her ...he usually tries so hard not to let anyone see him behave this way.
    I am going to spend the week end at my daughters house ...if Jim's son and his uncles want to speak to me they have my mobile number I will arrange to meet them but not on my own .
    Thanks too to Sylvia ..I know this mood will pass its just so hard when it happens.

    love

    Judith
     
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Judith I think that's an excellent idea about spending the weekend away from home. Also I see why your daughter told you now: if she wan't used to it I'm sure it was a bit of a shock.

    Love
     
  10. suem

    suem Registered User

    Jul 1, 2005
    61
    Worcestershire
    You have my full sympathy dealing with step children....as if you've not got enough to cope with all ready.

    If you read some of my posts you'll see the problems I've encountered but you must stay strong. You are next of kin and youare the one who is the carer, not them.

    My husband is on long term respite while they sort out the funding for the home he is in. His wonderful caring son's who no way were going to see him in care have visited once in 5 weeks...I think that say's it all !!
     
  11. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    The step son did come and visit his father to "assess" how he was... such is the arrogance of this man he has read a couple of articles on Alzheimer's disease and is now an expert.

    I kept well out of the way and left him to it I did not want any confrontation with anyone so thought it best I remain out of touch .

    When my step son went to see his father he got rather a shock as to how the disease had progressed since he saw him last december. He took his sister, my step daughter along with him , Jim recognised her as she has been a constant visitor to our home and has spent some time with her dad to give me a bit of breathing space...but he didnt recognise his son and had to be told who it was that had come to see him.

    They did spend some time with Jim and also took him out to lunch.

    In fairness to my step son he did tell his father that he was in the best place and that I could no longer look after him full time and this seems to have settled Jim down.

    I am hoping to go and see Jim tomorrow ....I have not seen him since he went into emergency respite on the 23rd August, I am keeping my fingers crossed that he is ok when I see him and not demanding to come home. I will keep you posted on the outcome.

    Sueem, I have been reading your thread on your situation ....we seem to be on similar paths at the moment I hope all turns out well with the Care Home for Your Husband

    Love

    Judith
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,647
    Kent
    Dear Judith,

    Well that seems better. At least your step son has a more realistic idea of the situation now, and has realized his father needs more care than you can manage.
    It must have been a shock, that he didn`t recognize him.

    I`ll keep my fingers crossed for you tomorrow and hope your visit won`t be too upsetting.

    Love xx
     
  13. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Yesterday's visit.

    I went along to the NH . Jim was in the garden we had a tottering first 30minutes when obviously JIm was saying he was coming home ..he ran allover the garden and came back saying "see I am fit I can go home" I talked to him and explained that physically he was a very fit man especially for a man of 71 but it was his Alzheimer's disease that made it iimpossible for him to care safely for himself and that I was unable to continue looking after him at home . When he realised that I was still part of his life and that we could spend lots of quality time with each other and that our friends would be visiting also he became more relaxed.
    We spent the next hour setting up his Television in his room he was telling me about how the care staff were very good and we generally had a pleasant afternoon.
    When it came to time to leave I had to go to the managers office to sign some paperwork, who should come out of the office but Jim's younger brother, apparently he had been shouting the odds at the manager about why was his brother in there when he didn't need to be threatening to have a judge get him out of there ( his words not mine!) When he saw me he was quite taken aback.

    Any way there followed a long discussion with us both about the reasons for Jim being there ( THis from a man that did'nt speak to Jim for over 10years.)

    By this time Jim had joined us . His brother was getting quite vicious with his comments to me at which point Jim bless him got hold of my hand and said to his brother " If you are going to talk to my wife like that you had better leave. "
    His brother then proceeded to berate Jim for "making him look a fool"

    Families eh!!

    Judith
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,647
    Kent
    Dear Judith, to H**l with the brother.

    As long as you and Jim can reach an understanding, it`s all that`s important and way beyond what I expected.

    It sounds as if things will be OK for both of you. I sincerely hope so.

    Love xx
     
  15. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Families

    Well, I aint got much and neither has my husband. He was the sole carer of his mum for 15 years, and it was very hard as there was nothing much wrong with her apart from loneliness and she expected him to fill the gap left by the death of his father, while coping with two teenage daughters. My dad died 4 years ago, and I know he was proud of me with the way I handled his diagnosis of terminal cancer, I organised the stair rail, the grab handles, the adjustments to the shower, the Attendance Allowance etc. etc. I ferried mum to the hospital when he was in there initially for diagnosis, then for chemotherapy, then to die, and no-one helped me, but there was also no-one to say I wasn't doing it right. I wasn't Mrs Perfect, there were days when I just couldn't do it, and days when I resented doing it, but it was up to me. Dad died 3 years ago next week. The greatest loss of my life.

    Now it is my mum with Alzheimers. She has recently gone into a Care Home. I am so glad I had no brothers or sisters telling me what to do. The decision was hard, I took it after a lot of deliberation. I looked at all possible alternatives, care in the home, night care, day care, you name it, and chose the Home. I am not happy with my decision, and I don't need any sibling to tell me so. I will monitor it, I will move her if absolutely necessary (though she is settling in a bit now), but I did the best I could, and if I had some sibling telling me I was wrong it would make it all so much harder.

    Shortly after mum went into the home, my two daughters visited. They both live away, and they had just taken my word for it as to what was wrong with mum. They are both young, no previous experience of this, and when they visited mum was very lucid, and I thought "oh, crikey, they are going to think I have made this up". I must have done something right in bringing them up, cos they never even made such a comment. They are supporting me to the hilt. Cos they know I am a caring daughter, and mum would not be there (at £460 a week!) if it were not necessary.

    So to all of those of you who use this site, I KNOW YOU ARE ALL DOING YOUR BEST FOR YOUR PARENTS OR RELATIVES. YOU WOULDN'T BE BOTHERING WITH THIS SITE IF YOU WEREN'T DOING THAT. YOU WOULDN'T BE INTERESTED IN OTHER PEOPLE'S OPINIONS. YOU WOULDN'T BE WANTING REASSURANCE IF YOU DIDN'T CARE.

    I am so glad I have nobody else to answer to. It is bad enough answering to myself, I chew it over and over every day. For once in my life I am glad I have no sibblings or their partners to consider in my decisions, and thank God my daughters (who are mum's only real relatives) believe me in what I tell them.

    Phew. I don't know how you deal with brothers and sisters who don't agree with you. I can't imagine, I have no experience. If they haven't been involved with your parent's daily care recently, I'd tell them to Bog Off, but it probably isn't that easy. But at least tell yourself, the decision you have made has been made in good faith, it was the best you could do. And who best to make it but you?

    Keep strong. Keep faith in what you have chosen to do. Believe in yourself.

    Love, love to everybody on this site. We are all doing a most unpleasant job, and for the most part it goes unrecognised. That we can live with. But to be criticised for it is unacceptable.

    Margaret
     

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