1. barraf

    barraf Registered User

    Mar 27, 2004
    I haven’t posted for ages; seem never to have the time these days.
    This week Margaret is in respite care, so having more time for myself for a few days I thought I would return to the fold.

    Since I last posted Margaret has deteriorated until she now is almost immobile, very rarely speaks and when she does it is usually unintelligible. She has to be fed, and will not or can not swallow solid food and went down to six stones in weight, I now puree almost everything and have got her back up to just under seven stones. She is still aggressive and will lash out and hit you if she is in that mood, but not as frequently as she used to.

    We have moved into a bungalow earlier this year, from a three-storied house (which is another factor that stopped the posting) and had the bathroom made into a wet room with a wheeled shower/commode chair. Life has become much easier from a physical point of view; in fact, I could not have managed much longer had we stayed where we were.

    Now have Direct Payments to enable me to engage Crossroads four afternoons one week and three afternoons the alternate week. In addition, this year starting August 1st we have 56 days respite care to cover the next 12 months. I have booked seven weeks throughout the year, this week being the first, and saved a week for any emergency that might arise. We are fortunate that the council have a new purpose built EMI unit only 1 mile from our house; they take 30 permanent residents and have 10 respite beds in a separate wing. Everything is brand new and the staff seem very good, pleasant and conscientious.

    We still manage to have a holiday thanks to Vitalise, went to West Bridgeford in May and have booked for Southport again in October, they only take Alzheimer’s patients 2 weeks per year so we are restricted to those weeks.
    Just thought I would let you know that things aren’t always black and you can get bright periods.
    Cheers Frank
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Frank

    Thanks for the positive post. I'm sorry that Margaret is deteriorating, but you seem to have your support systems in place, and it's great that you can still enjoy holidays together.

    You're lucky that you have such a good home on your doorstep, ther's often so much stress involved in finding a suitable placement.

    I hope you and Margaret continue to have some good times together.

  3. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    Hi Barraf/ Frank
    Just To Say How Nice To See Your Post Here Today ,i Have Often Wondered How Things Were Going With You And Margaret,so Glad You Are Coping As Well As Possible, You Replied To My Very First Post . My Carers Days Are Over Now , But Not My Caring About Others Here On Tp. Look Foward To Seeing More From You .
  4. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Sorry to hear that Margaret has deteriorated but you seem well organised in getting things in place to help you cope.

    It is a terrible illness to handle and we all have to find ways of handling it. Good for you.

    Pleased to see you back and I am sure you will be able to help others with your experience of this illness so far.

    Best wishes Beckyjan
  5. Taffy

    Taffy Registered User

    Apr 15, 2007
    Hi Frank,
    So pleased that things are working well for you with your move. Sorry to hear that Margaret has deteriorated. Enjoy your weeks break. Take Care. Taffy.
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    pleased to read that you have a good support care plan set up .

    lovely way to put it, keep returning :) wishing you a good rest, giving you back the energy to keep looking after Margaret
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Frank

    Welcome back to TP.

    The last time you posted was before my time, so I don`t know you.

    It seems you really do have your house in order and have managed very well to get things organized, even though your wife has deteriorated since your last posts.

    I hope you benefit from your respite and continue to post on the Forum. It`s always good to hear from old friends of TP.

    Take care xx

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