Is this a TP first?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Nell, Jan 2, 2008.

  1. Nell

    Nell Registered User

    Aug 9, 2005
    I've hesitated to write this post because it does seem such an extra-ordinary thing to do, but I'm counting on TPers to be their usual supportive selves!

    We have moved Mum out of a dementia specific home into a regular home. :eek: As you can imagine, it was not a decision taken lightly.

    Mum is declining VERY slowly. As I've said previously, I could almost wish she would decline more rapidly because of her own feelings of torment.

    The home she was in (for 2 and 1/2 years) was the only one that took couples at the time M&D needed to move. Mum had been diagnosed with dementia and, because Dad was totally disabled, living at home was no longer possible for them. It seemed like a good idea, because the home catered for dementia and non-dementia residents and because it was close to me. Also, we were told a nursing home would be built on site within two years. There is no sign of this even beginning to be built.

    Dad died fifteen months ago, leaving Mum very lonely and even more dependent on us. The majority of the dementia sufferers have declined faster than Mum. The Home now takes only those with dementia. These factors combined have resulted in a very unhappy mother, with "no-one to talk to".

    A couple of other residents from Mum's original home moved to this new one because they needed Nursing Home care. Mum is friends with one lady so my sister took her to visit.

    Well! That was the start of it! She was determined to move - to get away from all the "nutty" ones. (Mum has never accepted that she has dementia.) She wanted to move into a place where the people were "sane, like me" :rolleyes:.

    So we began the long process and were fortunate that she has been accepted into what they call their "low care" wing. They also have a Nursing wing (as mentioned) and a dementia-specific wing, where Mum will probably end up.

    We had considerable concerns about the care on offer in the first home. Whilst the Carers are mostly wonderful, the ratio of Carers (1:15) for dementia sufferers is woeful.

    Whilst Mum was able to care for her personal needs, this wasn't a great problem, but we could foresee that it would be once Mum could no longer do that. The new home seems (who can really be certain??) to offer a better ratio of care, and certainly has better staffing - there is a Registered Nurse on duty 24/7.

    Mum has survived the move quite well - not sure if the same can be said of me!! Of course, she is now saying that all the other residents are "too old" (Mum is 85 and a number of them are younger than her!) and that they "sleep a lot". No doubt she will soon decide they are not the riveting company she was hoping for!!

    The amusing (and sad) thing about this is that Mum herself is not a sociable person - never has been. She will never initiate conversations by herself and can rarely be bothered to take part in any social activities. We are quite sure that she will be disappointed in her fantasy of "new friends" but there is nothing we can do about it.

    We have reiterated to Mum that there will be "no more moves" but no doubt she will want to move again. However, this IS the last move - from here on (unless we face a real disaster with the home) she is staying put!

    This is something we felt we had to do for Mum. We could see her finding it very difficult to cope in the dementia specific unit (even though she has AD herself) because of the level of deterioration of the other residents. We have looked into this new home very carefully and we are (reasonably) confident that it addresses some (if not all) of the concerns we had with the other home.

    I hope TPers will understand the reasons we have for moving Mum and support us in these. There are still doubts of course, and we no longer believe in "the perfect home" :), but we are hoping above all things that this decision is the right one for our Mum.

    Thank you for taking the time to read this. Your comments are (as always) very welcome.
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Nell,

    I'm sure you've done the right thing. I know there were lots of things you were unhappy about in the old home, and the staffing ratio was very poor. I can't imagine how they coped with all the washing, dressing feeding and toiletting of the residents.

    You may fing that as your mum progresses, she will need nursing rather than EMI care, as has happened with John, but whatever happens there will be appropriate care onsite.

    Well done for arranging it. I hope your mum settles well in her new home.

  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Nell.

    What struck me immediately on reading your post, is how thoroughly you have analysed the pros and cons of moving your mother and yet still have doubts.

    The responsibility is tremendous.

    I moved my mother from a poor home to an excellent home, but the move was delayed until the new home had received official double registration. She too was dismissive of other residents and was anxious to move.

    Unfortunately, by the time she did move, it was too late for her to appreciate the benefit and she died within the year.

    So you have acted in your mother`s best interests and I hope time will tell, it was the best decicion . At least it isn`t too late. By the time my mother moved, all her gregarious social skills had gone.

    You know your mother and you have tried to do what she wanted and what you felt was best for her.

    Love xx
  4. snooky

    snooky Registered User

    May 12, 2007
    Dear Nell,
    Sounds like you have done exactly the right thing for your mum. It sounds much better as Hazel said the care ration being so low at the previous home, you really need people that are able to offer their time, support, comfort and at times humour to your mum (I know my dad has enjoyed that personal aspect). I am sure that your mum will settle and she sounds as though she has a really caring son to look out for her anyway. What more can we do. I hope it all works out well for you and your mum.
    Take care
    Snooky x
  5. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Nell: You have obviously considered this all so very carefully and it sounds as if you have done exactly as I would have done. I do hope it works well for your Mum.

    Best wishes Jan
  6. connie

    connie Registered User

    Mar 7, 2004
    Dear Nell, I congratulate you on looking after your mum's need so well.

    Maybe this move will settle mum for long enough, surely there will come a time when she will feel more settled. Well done.
  7. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Nell,
    You are doing all the things we have to do in the best interest and love for our loved ones.
    Peter also thought when he was around other people that he did not belong on the E.M.I. Unit.
    After about 3 weeks, I could see that Peter of 62 was not doing as well as the older resident.
    I wish you all the best.
  8. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    People who attempt extra-ordinary things for the good of humankind (be it for one person or globally) - are generally 'pioneers' ..... well done Nell - and thank you for sharing .....:)

    Whatever the outcome ( and let's hope it is very positive) you've exercised your best judgement at a given time (with a lot of thought clearly) ..... what more can be asked of anyone? I hope your mum settles quickly ..... and enjoys her new 'friends' :)

    Love, Karen, x
  9. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Dear Nell,

    I'm no good at the emotional stuff others on this site are better at, you have done the best.... It must be difficult..... We need friends like that, of course, but I am the practical type. So here goes.

    It is dead obvious that you had to move your mum, a ratio of 1:15 in such a unit is laughable (if it were possible to laugh), even in my mum's general care home (no special dementia status at all, but all the residents have it to some extent), it is 1:8 in the day (pratically often more cos the domestic staff join in things too, chatting etc. in fact in the day I can usually count 5 staff in evidence), and 1:13 at night. Your mum didn't want to stay in a unit where they were all potty. Fine. You had to move her to a more general home. You have done the right thing.

    They must have been spending a lot of time on residents who needed a lot of attention and that would have meant your mum probably gone none.

    My mum sounds similar in her development of the disease to yours, she doesn't know she has AD, knows she has a problem with her brain, but in fact telling her she has AD wouldn't help cos she wouldn't know what it was. But in many respects she is alert and conversational, like your mum doesn't initiate conversation and like your mum doesn't join in the activities
    (one of the reasons we chose the home was because it offered activities). But two of the alternatives had residents who were far worse than mum, and whilst she might end up there at some point, it wasn't right for now. They were quite depressing homes, no doubt providing wonderful care to severely demented patients but not appropriate for mum. The home she is in is okay. I wish it were a bit livelier, a lot of the residents do sleep half the day, but we have to remember that our parents are not just elderly or infirm, but demented, and it must be difficult to find (or provide) a home that is just perfect for such a person.

    Mum's home has nowhere for her to progress to as she gets worse, they have no nursing care, no dementia unit, so we have all that to face in the future, but at the moment I can't think of anywhere better for mum. She hates it, she is constantly wanting to leave and get a little place of her own. I find the staff mostly great, some more great than others, one or two a bit miserable, but I couldn't find anywhere better. She has made one friend, quite why she has chosen this lady I do not know, but she has, both are only about 80 years old, most of the others are much older and mum finds pleasure in helping them in little ways like taking their empty teacup back to the trolley or moving a stool out of their way if they are trying to get through with their walking frame.

    No, it is not ideal, but like you, I have done my best. The Home is "appropriate" or as appropriate as you can get. And I admire your courage in saying you will not be moving your mum again, unless of course needs must. If you are not careful, you can be shunting old people around from place to place and with dementia it is not on. They do need to familiarise themselves with a place, and feel relaxed there. I bet your mum is fine in 6 weeks time.

    I have hated the whole process, I have been unable to eat properly for the last 7 months, some days I have eaten nothing, my caring husband has prepared a meal and I have just picked at it, despite being supposedly hungry before I sat down. Of course I don't envy people whose loved ones have to be in a secure unit, or a nursing home, but when your loved one is a bit mixed I think it is that much more difficult to find the right place.

    Anyway Nell, you have done it right. Give it a few weeks and I bet mum will be fine, but if not, well what can you do? As I said, my mum hates it, but for no good reason other than she doesn't want to be in a home, so she is staying. There is no choice. I will have to re-think if she gets to the stage where they can't cope with her, but so far they are doing fine.

    Let us know how your mum gets on, Nell, and good luck.

    Much love

  10. Taffy

    Taffy Registered User

    Apr 15, 2007
    Dear Nell,

    Having mum in the same home as the one your mum has just moved from I understand your reasons and fully support the move. I know your mum at this point can still manage her own basic care needs. Judging by my own findings with mum who needs a lot more care and support than your own mum....the support is just not there.

    I hope that things are much better in the new facility and that your mum receives all the care and support that she needs now and in the future. At least your mum will have the opportunity if she desires to have more meaningful conversations with other residents. Your mum is very fortunate to have such caring daughters.

    Fingers Crossed the road ahead is all positive. Take Care Taffy.
  11. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    Hello Nell, I am sure you have done the right thing. I fought tooth and nail to keep my mum out of specialist dementia units because I didn't think my mum was anywhere near as bad as the other residents and she still has, in my not so humble opinion, more grace, humour and character than even her 'sane' companions.

    It was quite difficult because with a diagnosis of Alzheimer's, most 'normal' nursing homes would not accept her except the one where she resides today. However, she hasn't been the least problem to them and although she doesn't get much stimulation there are occasional activities in which she is included especially if I am around. More of the residents seem to have dementia now anyway, and activities are gentle enough for all of them if they choose to join in.

    Of course the concept of 'better company' has to work both ways. The residents in my mum's home don't make friends easily with one another and I think my mum is a challenge too far for them with her constant confusion and bizarre attempts at putting a sentence together. But they are polite to her and smile or try a few words when I am around.

    The staff ratio is very important. I'm glad you made the change. I don't think you will regret it. Love Deborah
  12. Nell

    Nell Registered User

    Aug 9, 2005
    I'm sitting here with tears in my eyes thinking how lucky I am to be partof such a caring and supportive group. Thank you all SO much for your supportive comments which I truly treasure.

    Thanks especially to dear Taffy whose Mum is in the same home as my Mum was in, and who I know, shares my concerns. Circumstances prevent her from doing anything about it yet but with luck these circumstances may change soon. In the meantime, Taffy spends as much time as possible there looking after her Mum - when not busy looking after her Dad, who refuses to go into a home!! :eek: Bless you Taffy for your endorsement - it was extra special to me because of our shared experience.

    On a lighter note:
    I have been unable to eat properly for the last 7 months, some days I have eaten nothing, my caring husband has prepared a meal and I have just picked at it, despite being supposedly hungry before I sat down.

    Margaret, I only wish I had the same problem!! For me, I gulp down food even when I'm not hungry, if I'm over-tired or over-emotional!! Please forgive me, because I know this is a real problem for you, but it just goes to show how different we all are! :)

    Thanks so much for your common sense and your good wishes,everyone. You have lightened my load a HUGE amount. You are all saints!
  13. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Deborah, my mum has no grace, humour or character - I wish - she is just an old lady who wanted to spend the rest of her days cleaning, cooking and washing, and now isn't able to. She has no conversational content, doesn't read, doesn't watch the telly, I am afraid she has become one of those residents who just sits in a chair and stares into space for most of the week. She is fine when I visit, but I don't go every day, I can't, I work full time, but am thinking to give up work, cos otherwise she has nothing to look forward to. Not that the conversation would be worth while "Have you heard from the girls?" "No, not this week". "Is Chris okay?". "Yes he is fine". "What is the weather like?". "wet and windy". End of conversation. Can I really do that every day?

    Nell, you might find it sad to not have my loss of appetite, but I am definitely not getting my 5-a-day, or even 2-a-day, I came home tonight to a Chilli Con Carne my husband had made, I ate about two tablespoons of Chilli and virtually no rice. One slice of garlic bread, and that is all I had eaten all day. I cannot be bothered to peel an orange, I find most vegetables tastless unless they are in a casserole, with lots of salt. I am just not eating right.

    Yes, it affects us all differently. I did down about six glasses of wine and smoked 10 cigarettes this evening, and managed a banana!

    Mum has 4 skin infections going at the moment, it is all getting me down. I thought it would be easier with her in a care home, but it aint. I think I need to do a separate post on that. I probably already have!

    Oh, gosh, it is hard work, and I am fast realising from all everybody's posts that it is going to get worse.

    Much love to you all.

  14. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    I think you have done absolutely the right thing for your mother. As her AD is progressing very slowly, I don't think it's appropriate for her to be in a dementia-specific unit. YOu know what is best for your mother and you've done it. A pat (or ten) on the back from me:).

    Think long and hard before you give up your job, particularly if you feel a sense of obligation or duty. I did quit my job at one point and spent more time with my mother for 5 months, but my job had become impossible and it was more about me hating my work and less about spending time with my mother.

    If you do decide to make work changes, perhaps you can change your hours in a way to enable you to see your mother more often. I find it's not the length of the visit, it's the frequency. I used to spend a lot more time but now that simply doesn't work. My mother is in a wheelchair, doesn't speak, doesn't feed herself, is doubly incontinent and hasn't known me for at least a year. Yet with all that, I can truthfully say my visits now are easier for me than they once were.

    Perhaps you could job share - work 3 days a week. I think it's important to have contact with the big world outside. It's too easy to get swamped by the Alzheimer world.
  15. alfjess

    alfjess Registered User

    Jul 10, 2006
    south lanarkshire
  16. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Nell, it seems to me that you have made exactly the right decision for your mum. As you say, nothing is perfect, but you saw the need for a different environment, sussed it out, and made a rational decision. Well done for that, and I am sure it is the right one.

    Canadian Joanne, I can do more or less what I want with my job, it would take too much time on here to explain, but I'm a University lecturer, so problem 1 is, if you have a lecture tomorrow you can not be visiting rellies today, you have to get that lecture done, whether it is Sunday, Tuesday at 10 p.m. or whatever. Same with marking, if marks have to be input by Monday 21st Jan (which they do!), you have to spend Friday night, Saturday and Sunday doing it). On the other hand, once you have got them in on Monday at 12 noon after the system has crashed 5 times,, you might have no teaching on Monday afternoon, so you can spend it visiting Mum, before going on to Uni to teach till 9 p.m. Everyone is fed up of hearing about teachers and lecturers, so I won't labour it. Today I had a day "at home". 200 emails from potential students. My husband said "don't answer them, if they are serious they will ring you". I can't see how answering 200 phone calls is easier than answering 200 emails. Oh, you might think we are a popular University if I get so many emails. No, they are mostly people who don't know what they want to do, want careers advice, a change of direction (I get a lot of former Care Assistants wanting a change of direction!), and only about 1% will end up as students with us, i.e. 2 of them). Okay today was a busy day, tomorrow I might have only 50 emails (and I am not counting the rubbish ones). I have virtually stopped answering phone messages, cos I cannot cope.

    So Canadian Joanne, I do have flexibility. Job shares are not on offer, but I could consider a part-time contract, but the situation re marking having to be done by Monday would still exist, and although I might have only half the teaching I bet your bottom dollar it would be in the pattern of 2 hours each every morning, afternoon and evening, with perhaps one day off. The position with teaching, I think, is that you are either full time or you give it up. I am coming to the latter conclusion.

    Alfjess, I am just the same with food. I go to the table thinking Hmm I'm really looking forward to this, and half way through I cannot manage any more.

    Wish I was thin as a result!


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