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Have i made the right decision or is there an alternative

Discussion in 'I care for a person with dementia' started by MissDiane, Jul 13, 2015.

  1. MissDiane

    MissDiane Registered User

    Oct 18, 2013
    73
    After taking forever to make a decision about mum's care I arranged for her to go into a local care home. I took advice from GP's, CPN's, Alzheimer's society and Social Workers. Mum has been there 2 weeks. Dad has been begging me for months to sort it out.

    The problem is she can't remember why she can't just go home (dad couldn't cope and there was escalating physical and verbal and emotional abuse). Sometimes she remembers and says 'you've probably done the right thing' but other times she doesn't.

    Dad doesn't help either, saying he misses her and forgetting how bad things were. he also has dementia amongst other things.

    Mum has moderate to severe dementia and poor mobility but can walk with a stick short distances.

    She has settled reasonably well, eating well, although some restless nights, care staff good but feels her independence has gone, there is no one really to talk to, and no where to walk to. The residents mostly sleep.She is pretty much chair bound all day unless someone comes to take her out. The staff don't seem to like her getting up. They also do everything for her, taking away the bit of independence she had left. I've mentioned this to the CH but it has not changed much. They seem to have a system.

    I have been running myself ragged visiting and taking her out but I can't keep it up with a young family.

    Dad wants her home, mum wants to go home, and I can see its not perfect and I am torn what to do.
    I'm not sure how mum can get some of her independence back. Do I need to consider another home? One with more freedom?
     
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,623
    USA
    Hi Miss Diane, and sorry you are having such a difficult time.

    It's difficult for anyone who's had to place a family member in a care home, when that family member, due to the dementia, cannot understand that they need to be there. In your case, this sounds even worse, as your dad also has dementia and can't remember that he cannot care for your mum, and that it wasn't good for your mum to be at home with him as the carer.

    That's an awful position for you to be stuck in-the family member who knows what the situation is, but unable to explain it to either of your parents.

    I am not sure I have brilliant advice for you, but here are options that come to mind:

    -leave your mum in the current CH permanently
    -leave your mum in the current CH temporarily, give it more time, see how you all settle, and in the meantime have discussions with the director and staff about making it better for your mum. You might be able to hire a private nurse or carer to spend time with your mum, for when you cannot be there? Others might have suggestions about this.
    -leave your mum in the current CH temporarily but with the intention to move her to another facility and start searching for another place
    -if she was not receiving the care she needed at (your parents') home, then I cannot advise you remove her from the CH and take her back to your parents' home, but technically this is an option. You'd need to consider this carefully, although I'm sure you don't need me to tell you that.

    And here is some unsolicited advice:

    Don't beat yourself up about how long it did, or did not, take you to sort out the situation. It's finished, it's in the past, you cannot change it. Focus on today and tomorrow.

    Don't forget that you deserve a life of your own and your family deserve your time and attention. It's easy to lose yourself in this process.

    Don't think you have to do everything, all the time, by yourself. Our parents with dementia need care, yes, but we do not always have to be the ones providing all the hands-on care and all the other care. We do many things as caretakers for our family members with dementia. It is okay to get help. It is okay to accept help.

    Best wishes to you in this terribly difficult situation.
     
  3. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    You need to remember the reasons you and Dad felt mum couldn't stay at home in the first place. Those problems have not gone away and might well escalate.

    It seems that for many people saying they want to go home is not what they literally mean. What they want is to go back to how things were before they became ill and where they felt secure. Other people ask to go home when they are at home or want to leave because they don't recognise their home any more.

    Sometimes they are referring to a childhood home; you might be able to check this out by getting mum to describe 'home'.

    Two weeks is a very short time to get used to such a big change, so I think you need to give mum a little more time. The staff need some time to get to know your mum and how best to help her. I would talk to the staff though about her care plan and how she can be encouraged to be a bit more active and involved in what is going on. Is there an activities co-ordinator who could help with this?
     
  4. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Hi,

    It sounds like you have done absolutely the right thing. The problem is that your mum is less active in the CH than she was at home. Hopefully if you talk to the staff they can sort things out for your mum to have her moving about more. It'll take a while b/c she'll need to settle in and both sides will need to get used to each other, as Pickles and Amy said.

    Try not to torment yourself about it. It's natural to have these doubts. It's a massive decision and everyone has second thoughts. Don't worry - I'm sure it'll get better as time passes.

    LS
     
  5. Mannie

    Mannie Registered User

    Mar 13, 2014
    115
    Bracknell area
    #5 Mannie, Jul 13, 2015
    Last edited: Jul 13, 2015
    It must be such a difficult time. My parent has a live in carer
    I think you should discuss your observations about your mum requesting different activities , engagement and stimulation with the care home ....with the view to get it written into her Care Plan. And then plan with them, for when the required care items will be introduced. It does not sound like a suitable regime, but it could be that they dont want to change too many things all at once, on the other hand boring her silly right at the start sounds a poor approach, and might well trigger unwanted behavior. Her CPN and Social Worker should be able to support you with how to word what you want into the Care Plan, and what would be reasonable to insist on/time frame.

    I have found getting it in writing in the Care Plan to be very effective, as I had some issues at first with live in care along same lines. A lot of it is tailoring the Care Plan, understandably that can take time.

    About care Plans, refer: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1191&pageNumber=3

    and http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=150

    "Recognising high-quality care"

    use the same words they use in this page, to hit the right buttons.

    If it does not improve soon, (NOTE you can check the care plan notes about what she did each day) then I'd think about another care home, one with a garden ? Possibly she is in one that has the incorrect match in terms of residents, but since she cannot remember, the facts may be different.

    In meantime can your dad visit to talk with her ?
    How about contacting local voluntery service for visitors.
    You cannot run yourself ragged any more . Ask for help from your siblings , and grand kids and her friends?
    How did she walk before ? Did your dad walk with her ?

    One thought - the behavior problems which led up to this were likely caused by the fact that your dad has dementia on top of what is a difficult task, so he could not provide the right type of care. A carer who comes into the home should be able to
    1. take the strain off your dad and 2. provide correct communication and stimulation to reduce the unwanted behaviors. Thus a win-win. Maybe you have already been through all this and still didnt work.

    In addition her GP should be able to supply some calming medications, or change her Alz meds, if you communicate with the right wording. If they dont just visit another GP in the same practice until you find one who is sympathetic, which you are entitled to do.

    A good book, Dementia the one stop guide by June Andrews
     

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