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Husband gone into assessment

Discussion in 'Younger people with dementia and their carers' started by Megan, Apr 21, 2007.

  1. Megan

    Megan Registered User

    Sep 10, 2005
    16
    Hampshire
    Hi, I've only posted on here a few times, but just wondered if anyone else had experience of a youngish husband, mine is just 58, going into assessment. Colin was diagnosed with Frontal Temporal Lobe demential four years ago. He has rapidlydeclined especially in the last six months, it's been difficult caring for him as we have a young ten year old daughter and I still work 5 days a week. He has been attending a day centre for a year now and then suddenly this week his Consultant called me in for a meeting, along with several other people involved in his care and it was decided that he should go in for assessment and then more than likely into care permanently. The meeting was on Wednesday and on Thursday afternoon I had a phone all to say a bed was available on Friday. Everything was such a whirl, I took Colin in on Friday morning, lovely ward and lovely people, but oh what an emotional rollercoaster. Don't know whether to feel relief, guilt, or what, I feel absolutely exhausted. I phoned this morning and he's OK, had a good night's sleep so I feel better about that, but they like to settle them in before a visit so I won't see him until Monday. The house is so quiet, and I'm used to locking the doors when he's in to stop him wandering out and having to help in all aspects of his washing and dressing and I can't as yet get to grips with the fact that he may never come home again. This is just scratching the surface of how I feel, I keep crying one minute and then I'll be OK the next and busy with my daughter. I'm sure we'll adjust but it's so sad for all our family.:mad:
     
  2. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    One day at a time.

    I know it is hard and just wanted to let you know I am thinking about you.

    All you can do is keep busy perhaps one of those jobs you keep putting off or give yourself a treat. Visit friends or family if you can.

    Take care and hope all goes well.

    Linda x :)
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Megan

    II'm so sorry. It must be devastating for you that your husband may be in pemanent car at the age of 58. I can't imagine how you cope with something like that, especially with a young daughter.

    At least you know that your husband is being well looked after, and is safe. Give yourself time.

    The fact that it's the weekend must make the emptiness worse, but at least you have your daughter at home. Can you arrange to go somewhere with her tomorrow? A complete change of scenery, or doing something completely different, will give you a chance to switch off for a while. Please don't just sit at home alone and brood -- however much you feel like it. If all else fails, come on TP and talk to us.

    It won't be long until Monday, and you'll be able to see if he's settled.

    I'll be thinking of you all.

    With lots of love and sympathy,
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    Dear Megan,

    I`m so sorry. When something like this happens, especially with such speed, it would be impossible for you not to feel as you do.

    Your world must have turned upside down.

    You have been a carer for 4 years, worked and are bringing up your daughter, so have gone from not having enough time to having too much.

    I do hope things aren`t as bad as you fear. Please let us know how your husband gets on. He is so young, and of course so are you and your daughter, to have to experience an ordeal like this.
     
  5. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Oh Megan, how hard this must be for you. I haven't had to go through this with my husband, but did with my father. Not the same, I know , but I can recall when he first went into the home the huge sense of loss and grief and guilt and fear and all the mixed but so raw emotions. It helped me to think of it as something that had to happen for then, that perhaps he might stabilize at some point so that I could look after him at home at some future date. I suppose I was just tricking myself into believing it wasn't for ever, but it helped at the time. It is such good advice - to take it one day at a time. Take advantage of the freedom it brings to do some lovely things with your daughter, make her feel special. You both have your lives ahead of you and deserve some happiness. I'm sure you will find your husband settles well and that in fact you can have a better relationship with him in many ways now that the stress of the day to day care is off you. Also, let yourself have a cry too - this terrible illness is often called the long goodbye and it is so true as we lose a little of our loved one with each day that passes and we need to be allowed to grieve at times.
    Blue sea
     
  6. Megan

    Megan Registered User

    Sep 10, 2005
    16
    Hampshire
    Thank you all

    Thanks everyone, I'm feeling a little brighter. I phoned the ward this morning and Colin seems to have had a good night's sleep. I can't wait to see him, the house is so quiet even though he didn't have much conversation, and it seems strange to be able to sit and read a magazine and have time to myself. But I don't remember being this tired when I was doing everything for him, I suppose it's our body's way of saying it's time to look after ourselves and slow down now. I've had so many phone calls as well from family wanting to know how he is and what's happening that is exhausting in itself but welcome all the same. I'll certainly post next week and give an update on our situation.
     
  7. annesharlie

    annesharlie Registered User

    Megan

    This is such a difficult step, even though we all know the day will come - you are a lot further on this journey than I am. Reading your note, I can see the one huge positive here, in such a hard time, will be the fact that you and your daughter will now have the freedom to go shopping, or out for a treat, or for a walk, without each time having to plan around the care for Colin - I am sure you'll grow closer to her through all this. How very difficult for such a young girl to come to terms with this - I do hope you have someone to help with councilling her.

    My husband is 52 and recently diagnosed,( FTD) though the problems first started almost two years back. I am wondering how long a period did you have from the time of diagnosis and stopping work, to the time when he needed someone with him all the time? I know every case is different, but it would really help if others can tell me their story. Also, how long then from when he needed someone with him, to this time, that he's had to move to a facility? It's so hard to plan with so many unknowns, but there are similarities in our cases.

    thinking of you this weekend - as people have said, do something special with your little girl - she is your future - what a blessing.

    Anne
     
  8. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    so true

    Megan, this is exactly what I said before, I felt fine, didn't think I was tired and I too was always checking the doors were locked and had to move knives and move the kettle away from its base as Steve was always boiling it and pouring boiling water everywhere and yet when he went into hospital, I slept for 10 hours every night for about a month and dozed off during the day too. My phone never stopped ringing for about a month too. You have your little girl to give more attention to so that will be nice for both of you, I didn't have anyone anywhere near me. I sat around and did nothing for ages 'because I could'.

    You will be fine, just take it 'day by day' as everyone here says. It does work.

    Sue
     
  9. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    I am watching this very carefully because I am about reaching the stage where more help is needed with Jean - she is just 60. I don't want to part, after being married 40 years and am finding other TP members reactions to parting a real comfort.

    On the one hand it would be nice to come home and not have to empty the dustbins to see what she has thrown away and just be able to get up and go somewhere without planning in advance and writing lists of medication needed, incontinence paraphanalia, all clothes... well you know what it's like.

    On the other hand, I have serious doubts about rattling round a three bedroomed semi, just myself and an old deaf and shortsighted dog.

    I suppose what I am really saying is that it is the decision that is hard to make and I am not sure I could make without a push, similar to the sort that you have had Megan.
     
  10. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    I apologise, I did not mean to imply that you were not involved in the decision or that you needed to have someone make the decision for you.
     
  11. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    The decision was made for me Grommit. Steve started going to a day hospital and on his first day there, the manager rang me and said he is very severley demented and he doesn't retain anything - did she think I didn't know that after caring for him??? Anyway, they then decided he should go into the assessment unit for a minimum of four weeks. That was 26th September last year and he didn't come home again. In October, I was called to a meeting with the psychiatrist and lots of other people and was told he will never come home as he needs 24 hour care so he stayed there for 6 months and went into a home five weeks ago. It mainly took so long for him to be moved to the home because he isn't self funding and 'there was no money'. The social worker rang me many times to ask me if I could have him home with carers going in twice a day and then carers 24 hours a day was mentioned but the psychiatirst said that that would cost them as much as going into a home.

    It is hard when they go into a home, you do feel lost because they have been your life and you've done everything for them and it does take a few weeks to adjust, specially when like Steve and I, we are 'young sufferers'. Steve is in a really lovely home two miles from our home and you can spend all day there with them if you want to so it's not as though you can't see them for a slong as you want to.

    Sue
     
  12. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    Thanks for that Megan. You do give me a lot of confidence and are very positive about the home he is in.
     

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