What is the right care decision ?

Discussion in 'Middle - later stages of dementia' started by Brown girl, Apr 1, 2015.

  1. Brown girl

    Brown girl Registered User

    Feb 24, 2013
    Hi all (sorry, this is quite a lengthy post but I want to give you the full picture),

    It has been a day and a half - in fact its been a month and a half...

    My husband, 3 teenage children and I care for my MIL who has AD and have done for the last 4 years. Up until 2 months ago were getting along fabulously, routines in place and whilst there was a slow decline in her awareness, we could handle it and all still maintain our day to day lives happily together.

    Then 8 weeks ago MIL had a sudden seizure one Saturday morning, falling onto her shoulder. After getting her into hospital, it was then discovered she also had a fractured spine. This is where our problems really began. The pain of the injuries, the fear of the hospital and the strange people around her and the general confusion of the situation has had a huge impact on not only her AD but also her behaviour (I am not sure if the seizure has also impacted on her brain)

    As I worked at the hospital, I would go up to give her a wash in the morning and change her, back up to give her lunch and then after work to give her tea and sit with her for a while - mainly to try to keep MIL calm but also to help the nursing staff as she refused to wear the back brace supplied to help the fracture (if it hadn't been for the dementia, it would of been an immediate operation) or the sling for her broken arm which needs a whole new ball and socket but again as she will not keep it still they cannot risk operating as she will lose full use if not kept in place.

    Her behaviour became progressively more volatile and mildly violent, with the staff having to call security on more than one occasion to prevent her from leaving the ward and causing any further serious damage to herself. It was eventually decided after 4 weeks in hospital that a stay in a care home with a 24 hour carer would be the best solution and hopefully return MIL to her former self.

    Sadly this is not the case, in fact her behaviour has become even more aggressive and agitated, she even refuses to allow me to assist her, which caused me particular distress as we have always had such a close relationship - she will not accept personal hygiene, screaming hysterically and sometimes physically assaulting the staff, she will not take her medication, refuses to wear the back brace, and often refusing to eat or drink. She is sleeping very little, pacing up and down and around the home to a point of sheer exhaustion but is extremely unstable on her feet.

    This is causing a huge concern to the staff as she is so unstable and is at risk of falling and last night accumulated in a call from the staff at the care home to say that she had stumbled and banged her broken arm - she was screaming with pain but would not let anyone near her, the GP was called but she refused to allow him near her so all he could do was ask the staff to monitor her and continue with the pain relief - the pain relief she often refuses to take. The care home called me after the visit to tell me that MIL had fallen asleep and after following the call up this morning, I was told that she had actually slept for 5 hours last night (the first time in 3 weeks) and that she had in fact eaten her tea last night and taken her medication this morning but is still in extreme pain and pacing around the care home.

    A CPN is now involved along with social services as the care home are extremely concerned about the fall risk due to the spinal and arm injury and are suggesting either a 24 hour carer with us in the home or an alternative care home, possibly nursing (am really unsure of where she will be allocated if not in the home). I have spoken to the CPN and asked to be involved in the meeting but here is my dilemma - What do I do ??

    Do I run the risk of bringing the aggression and possible violence home along with the refusals to medicate or wash (albeit with a carer in place), or do I take the option of alternative care? I am so torn, I can cope with absolutely anything but I cannot cope with the the behavioural difficulties and I am so, so worried about the effect it will have on us all, in particular the children, if we have to deal with this on a daily basis.

    However, I am also concerned that MIL might actually be better in the home setting than elsewhere and if I do not give her the chance, I could be contributing to her continued decline?

    The care home are requesting that the meeting be rushed through after the incident last night so will probably be held by next week and whilst I don't know what the options for me are going to be, her fractured and broken bones are still causing untold difficulties and her care needs are far greater than even when she was in hospital ?

    How do I make the right decision for everybody and will I ever get over the guilt and continual sick feeling I get when considering it, if I make the wrong one? What do I do ? Any advice however small, would be so appreciated right now - I can honestly say, even after reading the posts regularly, that I did not ever anticipate ever having to make this decision or indeed, how enormously difficult it would be.

    Thank you for taking the time to read my post.
  2. Tin

    Tin Registered User

    May 18, 2014
    Oh god, what pain your mil must be in. Sorry to read your post. If I was you I would do some investigating, find out what 24 hour care at home really means and check out nursing homes make a good old fashioned pros and cons list. No doubt this is going to be a heart wrenching decision you have to make, but remember you do have a team of professionals in place to help you. I really hope you can sort something very soon. Sorry if my penny's worth is not helpful., but just had to respond to your thread.
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    What a nightmare for you.
    I'd keep her in full time care as I wouldn't subject my family to the stress home care will bring.
    If the pros are struggling to cope how will you all manage 24/7?
  4. katek

    katek Registered User

    Jan 19, 2015
    Perhaps she could come home on a trial basis for a specified period (say six weeks) and if she were no better at home, go back into care.

    A similar thing happened with my father. He was already in a care home and his behaviour deteriorated to the point where police and social services had to be called, resulting in him having to go into a mental health assessment unit. At the first review of his care, it was decided that as his behaviour had improved somewhat, he may be able to go back to the care home on a trial basis. As it happened, the care home could not cope and it very soon became apparent that he needed the more specialised care of an NHS unit, where he now is.

    As you say, a decision like this always leaves one wondering what would have happened if I had taken the other option. So, at least, by having a trial at home, you would actually know whether this option would be feasible. However, from what you say, I tend to think that long-term your MIL would probably be better off in a more specialised care environment.

    Wishing you the very best with whatever you decide.
  5. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    I agree 100%. Even with a carer, unless you have a very large house, then the impact on family life is likely to be huge. When 24/7 care is needed then IMO a good care home is the best place, both for the person and for the relatives. A care home is geared up for care and supervision all day, all night, day in, day out. This is nearly always so much harder to manage in a normal family setting.
  6. Brown girl

    Brown girl Registered User

    Feb 24, 2013
    Thank you so much for your kind replies.

    The care home have called the meeting forward and an emergency Best Interest meeting has been organised for tomorrow with the CDN (I think that's the acronym - the dementia specialist), Social Services, the care home and myself to discuss the way forward as the care home can no longer supply the service MIL needs and they believe that there is a need for Mental Health intervention as she will not take the medication that she needs to keep the pain at bay, in turn keeping her mind more settled and due to her real risk of a fall, they have requested a safeguard be put in place.

    I really am dreading it as I am unsure what to do - I need to make sure that I go with my head and not my heart and I have to consider not only MIL but also my children. Although I am very much ruled by my emotions, especially at the moment, I need to consider so many variables.

    Are there any specific questions I should consider asking? This is my first experience of anything like this and really do not know what to expect.
  7. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    I wonder if it would help to try and imagine yourself in your MIL's shoes?

    Personally, I would not want to transfer all this trauma to my family's home, especially if it could adversely affect my grandchildren, and secondly, (and I realise this might be controversial) I feel I would want some sort of medication/sedative to control my agitation in order to give my body a chance to heal. I can't begin to imagine the stress, anxiety and probable pain your MIL is undergoing at the moment. The constant anguish she is suffering from must be unbearable. No wonder she lashes out.
  8. Girlonthehill

    Girlonthehill Registered User

    Jan 1, 2015
    Hi brown girl, first off well done for posting. You have come to the right place.
    I am assuming that MIL means mother in law so what does your husband have to say in all this. You seem to be taking on all the responsibility. I can see why as you are a caring person but this surely must be a family decision. Apologies if I have got the wrong end of the stick.
    You must put yourself and your family first. Hard I know, and I do know, but look after yourself please.
  9. Brown girl

    Brown girl Registered User

    Feb 24, 2013
    Chemmy - thank you, you are completely correct, MIL's anxiety is a vicious circle relating to pain and frustration and and sheer terror in a world she is locked in and this is my dilemma - if she was home, is there a chance that she could find the peace and relaxation to allow her to take her medication and find a way back to some of her former self - or do I take the risk of a care home, a more rigid regime for her medication but with the risk of losing her all together - as you quite rightly pointed out, this decision is not only about MIL but also the children and I know she would never, ever do anything knowingly to cause them harm, indeed, in moments of clarity she always asks about them. I will see just have to see what tomorrow brings and what the options are for us.

    Girlonthehill - Yes, it is my husbands mom and although he is very much involved, its his mom and there are many elements of her care that he just hasn't been able to get involved with, which over time, has meant that she turns to me more so and responds more to me when she is anxious. With regards to the care home, he doesn't want to face the fact that his mom has deteriorated so much but I have told him that ultimately it will have to be his final decision but as I am the main carer, my ability to cope will also have to come into that consideration - we just both feel so very torn, I am just hoping that the meeting tomorrow will make the process a bit easier.

    Thank you all so much for your posts - it is so very much appreciated.
  10. Brown girl

    Brown girl Registered User

    Feb 24, 2013
    Care Decision Update

    Just to let you know that following the review meeting, the decision was taken away from me which I am very much relieved. MIL was deemed to have no capacity and she is to be moved to an EMI unit that we are hoping will be better equipped to deal with her ongoing needs, particularly administering her medication.

    It is truly heartbreaking to see her, bent over from her now curved spine and walking herself to the point of sheer exhaustion - she actually falls asleep whilst walking, refusing to sit down or rest, endangering not only herself but other residents.

    I cannot believe the transformation the seizure has caused in the last 8 weeks and there is the assumption that the frontal temporal lobe has been affected, but this would have to be subject to a scan which at the moment, I really don't think that this is going to happen.

    Thank you all for your kind responses, wishing you all the love and strength on your own journeys.

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