I need advice from you all in how to word express something.

Discussion in 'ARCHIVE FORUM: Support discussions' started by Margarita, Dec 13, 2006.

  1. Margarita

    Margarita Registered User

    Feb 17, 2006
    #1 Margarita, Dec 13, 2006
    Last edited: Dec 13, 2006
    I need advice from you all in how to word express something.

    What it is as some of you may know , I am moving in to a house OT said on phone they can do all the adaptation to the house they my mother may need , as in putting a hand rail so my mother can go upstairs , where the shower is and the adaptation to the toilet that is downstairs where my mother is going to sleeping.

    What it is I have been told by the housing manger that he has another priority, house that has already been adapted and even has a life in the house to get upstairs. But the council have to authorise it . He says he can show me this house on Monday when we meet up with OT with my mother on Monday.

    My OT is going to meet me on Monday to view the house to see what adaption need to be done for my mother , mum has to come with me ; I did not want to take my mother angina , as she had a fall the other day , after viewing it with my daughter and I .

    My issue is that when I spoke to OT on phone, told her about other priority with life in house , she says that when she needs to write a report on my mother needs for the now , the other house has been adapted for someone that need a wheelchair to get around inside a house, that people with AZ can walk for around inside the house they have the ability to walk forever .

    Now sorry this is where I get frustrated angry, Confused , sad , so trap , in no one understanding where I am coming from, that they are stereotyping, decimating my mother disability, we understand that when you see one person with AZ you only seen one.

    The system does not understand , my mother going to end up laying in bed all day , if I don’t motivate her , need a Zimmer frame , yes she going to need a wheelchair to get around near her ending of life , who know no one , but why can’t they give me that type of property that is already adapted , so I can care for her as long as I want to, I want that choice I’ll be saving them so much money , rather then putting mum in a care home.

    I want choice , I just want that choice they can give me it , but they have rules .

    My daughter say , don’t just say it’s the AZ , that my mother has other disability can’t spell it , something that make her bones swell up and it hurts her knees,

    Mum just gone to daycentre, was telling a worker about it, he say that the hear now is important also, as long as the house can be adapted that also important, and should take the house anyway. I am going to take it that was not my point I have sigh for it. Sometime I feel I am losing a wining battle. can't even get that saying right now

    anyway does anyone have any idea in what to tell OP to try to get my point over, sorry but I hate the system in how they stereotype people with AZ its llike saying my mother needs are not so high , other people have greater needs , god my mother got AZ what does she need to be on her death bed at home with me before they listen to me , seem that way to me .

    Just don't want to bottle it all up cry , because I feel so angery and don't want to lose my temper when I try to explain it to them, so I share it all with you xx
  2. MrsP

    MrsP Registered User

    Mar 19, 2005
    Dear Margarita

    Have sent you a PM on this subject,

    love Kate x.
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Hi Margarita
    Just to get it straight in my own mind: you've been offered a house which would be OK for the present, but have become aware of another house that would offer more facilities for the future (i.e a lift). The OT is saying that 1) she can only report on your mother's current abilities and that anyway 2) AD won't affect her walking abilities in the future. Have I got that right?

    Dealing with the last point first, you might want to print out and show the OT this fact sheet from the AS

    the relevant portion being
    "The person will also become increasingly physically frail. They may start to shuffle or walk unsteadily, eventually becoming confined to bed or a wheelchair"

    Having said that, I doubt you will be able to change her mind for the present situation, but it might make her think twice about making such a stupid statement in the future.

    I really understand your desire to be prepared for all future possibilities, both mental and physical, because I also like to have everything lined up for the future. However, along the same lines as "if you've seen one AD patient, you've see one AD patient" no one knows what the future will bring, and I think this is where the OT is coming from. I know there are not that many properties available for the wheel-chair bound, and although it may be reasonable to expect that your mother will get to that situation, she is not there yet. Almost certainly, there are other people on the waiting list who ARE in that situation currently, and I guess it's part of the job of the OT to help allocate resources that are scarce.

    I think you need to focus the energies you have on making sure that the property in question COULD be adapted in the future, and if the LA would be prepared to do it. A chair lift, for example, is a relatively easy (1 day) job to install but making doorways bigger to accomodate a wheelchair is much more difficult. Does this new property have a walk-in shower? Even without AD, it can be difficult for an older person to get into a bath - what alterations can be made if necessary later on?

    Having typed this, I realise that I am giving the same advice as the day care worker - look at the here and now, which is not what you want. Although it may not seem like it, I don't think that the OT is making a judgment about the seriousness or otherwise of your mother's condition (I hope not anyway) but simply looking at your mother's physical limitations. She probably assesses 10-20 people a week with physical limitations - the chances are that although many, perhaps most, of those people are not as sick as your mother, at least some of them will be more physically disabled, which is her area of expertise.

    Another thing that has occurred to me while typing this - it is possible that there is a concious push to put people who may become physically disabled in the future into to housing stock that can be altered in the future - that way they get more accomodation suitable for the disabled later on. I suspect that alternations done for need, on behalf of an existing resident, may come out of a different operating budget.

  4. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Margarita

    Why is everything so complicated? To you (and to most people), it makes perfect sense to move your mother into a house which will cater for her future needs. That would save them money, and you more hassle in the future.

    However, I tend to agree with Jennifer. I don't think the powers that be see it like that. I think you have to take the house you have been offered, but make sure that it can be made suitable for physical disability, if it should come to that.

    Sorry you've now got this new dilemma, but I'm sure you and your mum will love your new house. It will be so much easier for you to care for her.

    I agree with you about treating all AD sufferers the same. No two people in John's memory group have the same symptoms or progression. If you can that across, you'll have achieved something.

    Good luck,
  5. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Dear Margarita

    Nodding my head at what's been said already - I'm afraid if you are angry that people are 'stereotyping' then there could be a case of them saying that you are too - by you appearing to make assumptions or forecasts about your mum's future needs. I'd hate for you to 'shoot yourself in the foot' by trying to use a rationale that could be quickly turned against you ...

    Sorry, probably not much help.....

    Just my thoughts,

    Love, Karen, x
  6. shauny

    shauny Registered User

    Oct 27, 2005
    north-east england

    Hi Margarita, my impartial advice to you is to go to your citizens advice bureau and ask for there support in case there are problems. They are there to help you and are a good independent advocate when dealing with the powers to be. Believe me i have referred families to them when it is clear i am dealing with complex issues and a independent view can be an important part of discussion. Shauny.
  7. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    Just been reading the posts my dad was carrying my mum upstairs to bed for a longtime we suggested for him to ask social services ifa stairlift could be put it. As it would be more easy for my dad. The reply was she has to be able to operate it herself for them to even concider it. She could not walk could not talk could not feed herself dress herself in the end he did put a bed in the liveing room but him taking her to bed was his way of trying to keep things normal for my mum even thoughit was killing him. I dont think he likedthe idea of her being downstairs and him up.

  8. Nell

    Nell Registered User

    Aug 9, 2005
    I know it doesn't help your situation but my Mum with AD definitely has mobility problems! I cannot undewrstand where the SW is coming from!! My Mum needs a walker just to move about and can only go out of the NH in a wheel chair. So sorry you have this extra burden to deal with. Best of luck! Nell
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    Just like my mother , care home are Adapted , oh but to move in a that is home Adapted , for mum who has AD is another issue :mad:

    Thank-you for all your replies all has put a balance to my view of thinking.

    jenniferpa Yes you got it all right , its just the housing trust manger , saying that he has 5 houses available, to fit my mother needs for the now and in the future and does not want to give it to someone that just has a walking stick , as they does not seem to be a height need for those housing in my area , but make them in case ( my case as if )

    But it seem that I shall give it a try with OP expressing what I say and leave it in there hands and then when the time come , mum shall just have to go in a care home ,

    Its just so hard letting go of that hurt feeling you know in what going to happen with someone with AZ , going in to care home in the future , when I know that with the right home I could proved the care my mother need in the future .

    I feel that pain its real to me, and then it go

    And its so hard living in the hear and now, no matter how much counselling I get , I want to run from myself and those feeling and can’t , because I can see a way out of preventing mum going in to a care home so the system kicks me down and puts me in my place . God I am die-hard and fight it all the way lol.

    I just have to get my thoughts un jumbled with all the stress and write it all down , yes shower has to be adapted in new house
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Dear Margarita

    I'm not sure how to put this, so here goes. Most people have good and bad days. Is there anything that triggers a particularly bad day for your mother? Because it might be a good idea to try an ensure that your mother's mobility problems are at their worst at the time of assessment. This makes it sound like I'm in favour of kicking her stick out from under her, which is obviously not so, but if, for example. tiredness makes her wobbly, make sure she's tired.

    Something else I thought of, and which isn't always obvious - check access into the house. If you're able-bodied, one or two steps are something you can overlook, but if later on she needs a wheelchair, a step can be a real pain.

  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    You made a good point there thanks

    Well going to visit the house on Monday to meet up with OT , mum having to go down 24 steps we are on the 2nd floor with no lift , to get taxi from my flat , have to take Zimmer frame with me , getting mum in out of taxi is also trying and tiring for her , so yes she going to right wobbly tired when we get to see OT , and since the bang on the back of the head last Friday , she really scared of getting out of her bed on her own to go to the loo or anywhere , in case she falls angina, even at the AZ day centre they said she was her usual self , so I did not send her for the other to days
  12. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Margarita

    Just wanted to wish you luck with your meeting tomorrow

    I read your post on the other forum.....sorry you're feeling so stressed just now. I hope once the big decisions over the house are made you'll be able to relax a bit and have a peaceful Christmas with your mum and daughter.

  13. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    Hi Margarita

    Just wanted to wish you well for tomorrow, I hope you get it all sorted out, and it's the best solution for both you and your mum.

    My heart goes out to you having a pending move, we moved house in May, then just finished clearing out mum's flat ready for the sale now she is in the NH. Total nightmare, having said that, great opportunity to de clutter. My motto now is, if it wants dusting, I dont want it.

    Again, will be thinking of you tomorrow, hope its all sorted out for you and you can settle down and enjoy the holidays.

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