How much risk should we allow in the family home!!

Discussion in 'ARCHIVE FORUM: Support discussions' started by fes, May 29, 2006.

  1. fes

    fes Registered User

    May 28, 2006
    3
    West Midlands
    #1 fes, May 29, 2006
    Last edited: May 29, 2006
    Hello all first time post at a crossroads stage......




    My mother is 53 years of age and was diagnosed with vascular dementia just over two and a half years ago and in view of what we know now has had symptoms for 4-5 years. Mum lives at home with my father who is slightly older mid sixties who is paralysed down the left hand side due to a major stroke back in 1996 because of this the stroke has affected the reasoning part of his brain and he can become quite argumentative, as you can understand not compatible with someone suffering from dementia, however he can also be very warm and caring at most other times.

    At the moment we are blessed that mum can still walk and talk even if what mum says is not understandable to the majority of people we are able to asses if she’s in any pain, although recently mum just closes her eyes she’s not sleeping I call it standby mode maybe is it the brains way of conserving what’s left. Mums mobility has not been affected but the consultant was amazed at the damage on the scan apparently you could see the damage from several feet (18months ago) that mums mobility hadn’t been affected although over the last month mum keeps bumping into things and when we get her dressed her balance is not as good as it was.

    Over the last six months we have been in receipt of direct payments an EXCELLENT SCHEME that has allowed us to personally choose a caregiver we employed someone via an advert in the local newspaper we even managed to choose a lady close to mums age it has worked well they sing along to the old motown music although mum sings out of tune (always did) and go for walks to the shops, me and my sister cover on evenings and weekends. However my father finds it quite difficult to adapt to an outsider being in his house I think he wants to care for his wife and control his environment (my dad is involved in all activities that the carer does). A couple of days ago my father has demanded that the caregiver leave the house as she is interfering as he puts it, I have had to put the poor lady on holiday pay while we decide what to do next.

    There are some comical situations that occur that unfortunately have a serious side also. Mum takes dads walking stick from time to time and also hides my dads keys/personal belongings and recently has a tendency to move the telephone also mums most popular phrase recently is I’m gonna hit him on the head and squash him and over the last couple of months mum has become quite aggressive and this is channelled towards my father mainly who in turn has a go back. Another situation that has happened over the last month my father was hurling abuse at the caregiver and then my mother joined in and backed the the caregiver into a corner.

    It seems that it is impossible for a care package to work in the house unless it is me or my sister doing the caring. These are our options employ someone from an agency to just administer medication and heat meals up, however this would leave huge amounts of hrs in the day where things could go wrong, dad likes to book the ring and ride/taxi service and try and take mum out however he could do this 12 months ago but now mum would just wonder off. Another option is me and my sister return to looking after our parents.

    A specialist dementia home, I visited one on Friday the majority of the patients were in their seventies and older and their was one employee to six patients in the daytime. I was impressed that i did not need to make an appointment and that they told me i could turn up any time 8 till 5 and see the operation in action. The home has a policy that they allows patients to wander and there is no set bedtime schedule if they wake in the middle of the night they take them for a walk, find this hard to imagine with so many patients and so few staff. On the whole I was able to take many positives from my visit.

    Find a working age dementia unit, there are only 250 people of working age in westmidlands contacting working/age team tomm to find out more about situation .However does it really matter about an individuals age you could have an eighty year old who is at a less advanced stage than my mother.

    When I was at uni i did a module on probability and my conclusion is that there is as much scope for things to go wrong in a dementia unit as in the family home. The main difference is you take the burden off yourself and family and place it on a care home but then you still worry about the quality of care in the nursing home.


    I suppose it all boils down to quality of life how can I ensure that my mother and father have that, and also myself and my sister DECISIONS DECISIONS

    Couple of questions if I may


    **************************************************************
    If someone with dementia enters a home at my mother’s stage is it better to introduce them gradually or just throw them in and hope they swim?

    What are some of the medical issues/concerns dealing with a person at an advanced stage in the family home?

    What are people’s experiences of employment nursecare agencies positive and negative?
    ***************************************************************

    Thanks fes
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Fes,
    Need to think about this one; just wanted yoy to know someone had read your posting. Welcome on board!.
    Amy
     
  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Welcome

    I did not go for the direct payments , but do have a carer from an agency that social services got me ,took mum a week to get use to her ,so found it very positive .

    Seeing that you’re entitled to the direct payments from SS, why not try seeing if your mum would go to respite first, how does your dad feel about your mum going into a home? & see how your mum likes it.

    who has the EPOA ? have you sorted that out yet ?

    Are you & your sister looking for a home for both of them?

    medical issues/concerns ..........As long as you know who to contact in an emergency, have all phone numbers at hand ,should be ok ,

    hope I have been of some help
     
  4. fes

    fes Registered User

    May 28, 2006
    3
    West Midlands
    Thanks for the reply much appreciated, spoke to social worker fri am who mentioned respite but stated that its frowned upon if it turns into longterm stay, if mum does have to go into care i would rather it be one home rather than moved about however running out of choices.

    Dad agreed with social worker on Friday if there is no care it is not a safe environment for his wife but yesterday was having second thoughts My dad was in residential care for a while back in 96/97 whilst the house was being adapted he would rather chop his arms off than be in a home again, although dad is paralysed down the left hand side with therapy he has learned to walk again with a stick he has stacks of willpower sometimes too much however this helped him to recover the doctors told him he would never walk again....

    I might try respite maybe dad will come to his senses and realise how much he needs his wife and much she needs him, but am worried as each major incident that occurs there then follows a serious detoration...

    Only looking for mum at present in an ideal world they could be in a home together in the future in a dual nursing/residential but they have got totally different needs One of my main concerns is i reckon they would not last 12 months without each other.

    The epa for my mum has been authorised and my dad is still compos mentis i.e. the law determines he can make reasoned decisions for himself but we have one in place hopefully we will never need to enforce it for dad.


    thanks fes
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Does that mean its your dad that wants your mum in a care home ? yes try respite you dad may just need a rest from your mum. It must be hard for your dad with his own disability , it’s a shame that he will not except a care packet , it’s a hard discussion for all your family I know in putting your mum in a care & I am sure your dad has her best interest at heart .
     
  6. fes

    fes Registered User

    May 28, 2006
    3
    West Midlands
    I agree it's really really difficult for my dad but he doesn’t want mum in a care home but he doesn’t want to have a care package in place, its actually the opposite he don’t want his wife to leave his side yet.

    On a positive note mums been quite relaxed over the last few days thats made me happy at least

    again thanks for your concern

    fes
     

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