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Thread: Very frustrating. Grant's respite for next year reduced to 2 weeks.

  1. #1
    Distinguished Community Member
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    Oct 2006

    Exclamation Very frustrating. Grant's respite for next year reduced to 2 weeks.

    G'day neuro buddies from the olden days and the from the newer days.

    Grant is entitled each year to have respite for 65 days a year, which he has been entitled to since he was 18. He is now 23!

    For the last 3 years Grant has had respite at a local nursing home. This is the ONLY nursing home at the moment that will take Grant in. Three years ago the Department stressed to us that we had to have respite, and they got stuck into searching for a nursing home that would take Grant in. Dozens of nursing homes were contacted and the local one is the only one that took up the challenge to take Grant in. The nursing home unit manager was so thorough that she had 18 (eighteen) nurses visit our home to meet Grant and learn all about his seizures. How thorough is that!

    For the last 3 years Grant has been offered 4 respites a year at the nursing home, for 2 weeks each time! Because of Grant's hospitalisations, he has averaged 3 respites a year. This is something that Grant and Alison and I look forward to. For Grant he has a great time getting spoilt by the nurses and staff; he of course is the youngest at the nursing home. He still has our home carers visit each day, so he does not miss out on seeing people that he knows.

    Grant has just enjoyed 2 weeks respite at the nursing home. Because the respite coincided with Alison's school break, Alison and I and the wonder dog Lily, were able to have a fantastic 5 days at Inverloch (right near the beach) :)


    On the way home from Inverloch, we called in to the nursing home to say g'day to Grant. When we arrived the carer was sitting in his room crying! She said that a nurse that she had never seen before came in and started yelling and being unreasonable. The nurse suggested that Grant should be taken out in the sun (incidentally Grant shouldn't go in the sun, because of one medication he has), and Grant's carer said that she didn't want to take Grant out (it was a cold although sunny day), because Grant was just finishing a course of antibiotics for a possible (not confirmed) chest infection. Grant's carer was very wise not wanting to take Grant out, don't you reckon.

    Now the nurse got angry and things got a bit loud and noisy and out of hand.

    The upshot of this incident is that the nurse has reported the incident to the head of the nursing home.

    I had a phone call today from the head of the carer agency, to say that the carer had contacted her and told her of the incident. She has now contacted the nursing home and has been told that an official complaint to the head of the nursing home has been placed by the nurse!

    The carer agency manager said that it is her responsiblity to look after the welfare of the carer staff, which of course is fair enough. She said that she wanted to go and see the nursing home manager to try and resolve the problem. She stressed that she did not want to negatively impact on Grant's respite days at the nursing home in any way.


    I have just received an email from the nursing home office manager to say that next year they are very booked out and they only have one respite (2 weeks) available for Grant in Novemember next year! For 3 years we have been offered 4 respites a year. It seems to me too concindental that all of a sudden the nursing home is now only offering Grant 2 weeks for next year.


    Boy oh boy!

    The nursing home staff at the moment are under a great deal of pressure. They are one senior staff member down, which has certainly affected morale. The nurses there get paid about 20% less than nurses working in hospitals, so the nurses there are very much there because they do care for the clients. However, being paid 20% less of course can have an effect on the staff. We have found over the years that some of the staff are fantastic, and others are not that crash hot. But we cannot vouch one way of the other for the nursing care staff. I am simply passing on what the carers have said.

    I personally feel that the nursing home have restricted Grant's stays for next year based on this unhappy incident. Alison is of the opinion that this is unlikely.

    If we are restricted to Grant going on respite once next year for 2 weeks, then we will be under incredible stress. We and Grant need to have the full 65 days respite. That is only fair. For Alison and I to have a respite date on the calendar is something that we can look forward to even if Grant is not particularly stable and unwell. Everyone needs a break.

    At the moment I am waiting to hear back from the carer agency manager to let her know what has happened with us being offered only 2 weeks respite for next year.


    Tomorrow the local palliative care social worker is visiting us. She is from the local palliative care organisation. They deal with folk who may be palliative in the long term, not the terminally ill pallitiave patients. We met with the local palliative care team some months back.

    When the social worker comes we will share with her to see if she can do some 'homework' and find alternative respite for Grant.

    I will of course keep you informed of outcomes etc.

    Hugs to the super kiddos and God bless and seeya here for comments.

    Paul, Alison and of course Grant the champ.
    Grant's story in pictures and music. A must see :)
    Seeya there :)

  2. #2


    Boy oh Boy is right! That's no coincidence! The palative care people will have some ideas. What a great carer you had, to look out for Grant like that.

    You two really need all the palative care time you can get. It's very demanding taking care of the Champ. I'm glad you were able to get away to the beach.

    Momster, mom to 2 boys: one of whom has CP, NLD, ADD, anxiety disorder, osteopenia/porosis and a few other letters following his name; and married 25 years to a wonderful guy

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Oct 2006
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    ((((((Paul, Grant & Alison))))))

    Looking forward to your update on the Palliative Care worker, as well as the respite care situation. It certainly does seem coincidental with the unfortunate incident at the nursing home. I hope that you are able to obtain more respite time in another equally competent and caring home.

    Love & Light,


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