1. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    The OT came today, referred to by my husband`s psychiatrist.

    She is the first home visitor my husband had agreed to welcome, since the disastrous visit by a CPN last year.

    She arrived at 1pm. as arranged, chatted to my husband while I made a cup of tea, then chatted to both of us.

    At the first mention of Support Groups and Memory Clinics, he turned to me, said he didn`t need any clinics, there was nothing wrong with him, I was looking for attention and being dramatic, then he got up and walked out.

    He has just returned. He has been out for over 2 hours.

    While he was out we talked about him, how he is and what he does.

    The OT believes he is still in the early stages. She believes this is the hardest stage for him, as he knows what`s happening and is still trying to fight it. But she does not believe it is the hardest stage for me. :eek: :eek: :eek:
  2. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    Hello Sylvia, it still sounds as aif a tiny chink of progress was made, no? Here's hoping you get more support in due course and that your husband mellows a little. Do you have any mutual friends who might play a part in suggesting helpful things/activities, or endorsing what the OT said?
    Sorry they didn't recognise the impact of their words on you. So easy to be clod-footed even when you are in the thick of it. Love
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    the fortunate thing is that, for us, each stage is the worst because that is what we experience at the time.

    Only retrospectively can we say this or that stage was worst for us. I have built up a little library of 'worsts'. Each is the worst in its own way.

    But in the same way, each stage is strangely the best we might expect from now on , because we do not know what is to come.

    Carpe Diem.

    Take care.
  4. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I'm glad the OT came, hope she'll be some use, even if not immediately.
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I'm not sure how I'd take the OT's comment. I suppose a lot depends on delivery. If she was trying to warn you it could get worse I suppose that's fair comment, but if she was minimizing your current experience not so good.

  6. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    #6 sue38, May 9, 2007
    Last edited: May 9, 2007
    Hi Sylvia,

    OT? Occupational therapist right? My Dad had a home visit by someone 2 weeks ago who I recall referred to herself as an occupational therapist. She spoke to me to arrange the appointment and I have to say I found the way she talked to me (a sort of sing songy tone) a touch patronising - maybe I was having a bad day. She had previously rung my Dad at home ( as 'there was nothing in the notes about not contacting him direct') and he had given her a hard time and upset her and she him. I apologised but thought surely you must be used to dealing with people with AD:confused: In the end I said to her 'Don't worry he'll have forgotten about it by now'. Actually he hadn't and went on all night about it.

    I couldn't be there for the appointment but I gather from my Mum it went OK. The difference with my Dad is that he does not have your husband's awareness of his problem, so to a certain extent things go over his head and he generally agrees to go along with what is suggested - particularly by the professionals . He has an appointment at the memory clinic on Monday. I assume that this is to keep him under assessment? I will try and go if my Dad is happy for me to be there.

    I can only say that as your husband's awareness of his condition decreases, the easier it may be to get him to agree to treatment.

    Did you feel that you had any benefit from the chat?

  7. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Sylvia

    So sorry your first visit was so disappointing. It's a shame Dhiren walked out, but maybe if you arrange more visits he'll come to accept them?

    It's also a shame that the OT was so discouraging. I echo what Bruce said. Each stage is the worst because it is new, terrifying, and we don't think we'll be able to cope.

    Then, as you begin to get used to the situation as it is, a new 'worst' jumps up and hits you.

    I'm not clear why the OT was discussing all this with you. In our case the SW arranges respite, day care memory clinics, etc. The OT just assesses mobility, and supplies aids where necessary. Is it different with you?

    I don't think you're attention-seeking!:rolleyes:

  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    No jennifer, she was very understanding , and trying to make sense of Dhiren`s behaviour.

    It is the hardest stage for him because he is still of aware what is happening and is trying to hold on to what he has left. She was impressed with what he is trying to do for himself to help his brain. He eats sardines every day,and other oily fish, reads the papers, takes exercise, watches sports and discussion programmes etc. It`s such a shame he went out as he missed the praise she had for him.

    I don`t think she was minimizing my current experiences, I felt she appreciated the daily upsets and recognized the inappropriate and unpredictable behaviour, but perhaps was trying to warn me too.

    To be honest, this is the first time this behaviour has been witnessed by anyone else, and I almost feel relieved it happened.
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Hazel, the OT came to do all the things she has the brief for, but resorted to general chat to break the ice.

    Once Dhiren had walked out, she did look at the steep back steps and said handles could be fitted, but she couldn`t do anything unless Dhiren was prepared to show her where the difficulties were.

    Because he has refused a visit from a SW, I asked about support while she was here.

    Sorry I`ve given a negative impression of her, she was just the opposite. But she accepted I am a realist and answered my questions as honestly as she could.
  10. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    That's good, Sylvia, glad you liked her. If you build up a good relationship, you'll get much more help when you need it. And thanks for clearing up the OT/SW mystery.

    Don't be too much of a realist, though. We all need our dreams (even if it's only salsa dancing!)

  11. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    The Hardest Stages

    Hi Sylvia,
    It's very difficult to say what the hardest stage can be. It so much depends on the individuals, both the individual with the disease and the carer. As for the carer, a lot is dependent on the state of mind.

    It was very hard when my mother was verbally & physically abusive but she knew who I was. Now the abuse has toned down a lot (not gone, though, God bless her) but she hasn't a clue who I am. What is more difficult? Depends on my day.

    Yes, it is a relief when others actually see the behaviour. Not that people don't believe one, but it's certainly different when they are exposed to the full glories of aberrant behaviour.

    Does your husband respond better to a male than a female authority figure? Maybe a male explaining his problems to him? Not that it worked with my mum :) .

    Take care & hang in there.

  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I'm glad to hear it was supportive rather than otherwise. I was going to ask about that but got chucked off the computer so had to finish my post in a rather hurried fashion! She sounds a valuable resource. How do you think Dhiren will respond to a future visit from her?

  13. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hello Sylvia

    Was interested to hear about your OT visit. (Sorry Dhiren walked out). We had a visit from the CPN and OT last month. The OT said she was going to 'work with' mum ... to try and get her to do some work! :D As mum had just been sitting around, crying and leaving me to it, then being agitated and abusive towards me afterwards. The CPN said that an outreach worker would take over from the OT if they felt this is what mum needed. To be honest, I think it is, because she's a sociable little bird and I hate to see her wasting away at home. Also, mum doesn't have any probs at the moment with mobility or anything like that so am not exactly sure how the OT fits in. However, like Dhiren, my mum says there's nothing (much) wrong with her. Certainly, she doesn't want anyone 'interfering' (her words).

    I have asked mum whether anyone has been as I've heard nothing but she says not. I am going to follow up in a few weeks' time, maybe push for the outreach worker, it's just convincing mum this is what's necessary. You sound like you're in a similar situation. Do you have outreach workers where you are?

    Since this intervention with the CPN/OT, though, mum does seem a little changed, or maybe that's just me ... hence my post yesterday about 'Quietly Coping'. :)

    I had a wry smile when I saw your last line about being told it's not the hardest stage for you. As Bruce said, each stage is difficult for all of us because it's a new experience. I can remember someone on here saying to me that when someone loses an awareness and moves to the next stage, it's easier for the carer. I think they meant physically, in terms of say, travelling and dealing with things on a day to day basis. If someone is in care, perhaps this is less so? However, the mental stress must still be there. Let's face it, this disease screws everyone up, even those not directly affected.

    You sound like you've been doing a grand job so far. I hope there's some progress for you both. Keep us posted about how it all goes. I'd be very interested to hear.
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Well I now have a very subdued husband, who knows he did something wrong but hasn`t a clue what.

    When I told him, he said it`s all because he`s `mental` and I know he would never have behaved like that before. That is true.

    But he thinks the OT can come again tomorrow. That isn`t true.

    Anyway, it`s not the OT who can really help, at this stage. She said as much herself.

    What I need to do now is get SS in for a Carer`s Assessment. Hopefully Dhiren won`t realize the difference. That may be the way forward.

    Thanks everyone.

    Deborah, I`m afraid our mutual friends fell by the wayside a long time ago. And even if they were still with us, my husband wouldn`t take kindly to `if I were you,` suggestions.

    Joanne, Dhiren definitely is more relaxed with a male. The only females he is comfortable with are nurses. Perhaps it is the uniform that does it.:)
    Actually, it is the uniform. To people like my husband, just a bit old fashioned, a uniform is a sign of professionalism.

    Jennifer, I doubt there will be any more visits from the OT in the near future, which is a shame because she was lovely. Just hope I`ll be as lucky with a SW.

    Lucille, The difference between your mum and my husband is your mum hasn`t lost her social skills.

    But yes Sue, I did benefit from the visit. This is the first person I`ve spoken to, in relation to AD, who was interested in ME.

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