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    We need to find long term care for dad

    Some urgent advice please. My mum is my dads carer. Unfortunately she suffered a heart attack last week and is in intensive care. Myself and my sisters have taken it in shifts to cover dads care for the last 6 days but with schools going back and work commitments, we can no longer be with him 24 hours a day. I contacted dads palliative care team and they had rapid response make contact. Care was arranged to start tonight. However when the carer arrived he didn’t seem to be too sure about peg feeding or using dads standing aid. Obviously this is not acceptable so my sister has stayed the night again along with the carer. I urgently need to arrange substantial 24 hour care for my dad’s very complex needs ASAP. Any advice welcome as I am just not sure of the best route and am immensely worried about dad. The stress we are all under right now is immense. Dad is missing his wife and has strangers in his home. He is feeling very anxious as are we all. I do believe he is meant to be having a new CHC assessment in the next day or so.

    #2
    Hi ,You can request an urgent social services assessment to look at your dads care needs and offer advice.There will be a financial assessment to determine if your dad needs to contribute to any care provided.
    It seems like a CHC assessment is imminent and this should include your dad and next of kin if he so wishes.This could be a quick assessment if deemed to require fast track NHS funding.Otherwise it’s a 2 part process(look on Age concern fact sheets on CHC which explain the criteria and process)
    Many people prefer to remain at home if the right care can be put in place ie PEG feeding support.Other people would like to consider residential or nursing home care dependent on needs.As MND is progressive in my opinion a nursing home might prevent the need to move again from residential care to a nursing home.
    Some people who don’t meet CHC criteria and have savings over a certain amount may need to finance in full their own care at home or in a care home.It’s a complex situation but if you look on line on Age Concern fact sheets there is good information about care at home,nursing home care and funding care at home or in a care home setting.
    Your father should be invited to any CHC assessment or if not able to attend then next of kin should be invited.(Your GP ,or Social services ,palliative care team should be able to give you contact details for the CHC team to get info on assessment venue and date if a referral has been made to them.If you father is turned down for CHC there is an appeal process too.
    Really hope your dad gets the care he needs ASAP .Also as your mom is in ITU your dad may not feel it’s appropriate to make a longterm decision for himself so a review would be needed.
    Best wishes
    Mary

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      #3
      His home is the best place and emergency care will be available from the Council.

      It requires an heroic effort from the siblings to get through the next weeks until the carers learn the ropes.

      CHC should be available but first things first!
      Copyright Graham

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        #4
        DeniseB-C Oh Denise, what a truly stressful situation for the whole family...

        In addition to the above - I wonder if there's a possibility of getting emergency respite care for your dad in his hospice whilst carers are trained up or found, to deliver the care your dad needs, and whilst the CHC is being processed which, I hope is being fast tracked.

        I know going for respite isn't staying at home and thus stressful for your dad at first, but it's a safe place with trained staff, and ideal for a short stay.

        Wishing your mum a full recovery.

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          DeniseB-C
          I hope you have got some care for your dad sorted now?As Ellie said respite care is another option .I know your post did say you are looking for long term care but that might be as you weren’t sure what all the options could be.
          Best wishes
          Mary

          Comment


            #6
            Oh Denise, what a terrible situation for you all.

            I won't add to the suggestions on here but I really hope you get care for your dad sorted and your mum makes a recovery.

            Thinking of you all,
            Love Debbie x

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              #7
              An update. Mum is still in the ICU but is making rapid progress. So that is some good news. I moved dad in with me and we were running along nicely for 2 weeks. Until yesterday. Suddenly his right leg has seized. He can’t bend it. So we no longer can use the standing aid. A hoist was delivered but he doesn’t want to use it. So now he is in a hospital bed in my dining room. His breathing and swallowing are also deteriorating rapidly. I says he believes he is near the end and he wants to go. Physio says she doesn’t think it’s imminent. For his sake I hope it is as I would like this awful disease to release him now.

              Comment


                #8
                DeniseB-C A mixed bag for you Denise...

                Your dad must be lost without your mum, if she were with him, I wonder if he'd have a different outlook on life?

                I'm sorry if I seem blunt but, if he has taken to his bed and feels 'this is it', he needs to see palliative care nurses to assess his situation, give him appropriate medication and to support him, you and your family.

                I know this is a very upsetting time for you, and full of uncertainty, but if your dad wants to go, heartbreaking though it will be for you, the kindest act of love you can do for him is to give him 'permission' to go.

                I can only give you a big hug Denise - I wish this vile disease did not exist... xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #9
                  He definitely has ‘permission’ from me. He is being made known to the local hospice by my local Neuro team. He has decided he doesn’t want to use his NIV any longer. He didn’t use it much anyway to be honest. A just in case kit is being organised too. He wants nothing that may prolong his life now and his completely understand this. I dearly with I could do more but all I can do is make him comfortable but even that’s not possible. He just isn’t comfortable any longer.

                  Comment


                    #10
                    Hi Denise,
                    so sorry you are in this stressful situation.The just in case kit/ anticipatory drugs are a good idea in case your dad declines rapidly.
                    Hope the hospice team have made contact if not can you ring them to get an urgent assessment of the situation?
                    Maybe a palliative care team is already involved? If so I suggest you get them out this weekend as with diminishing breathing snd swallowing he may need their professional help to get comfortable.
                    Also if dad won’t use the hoist there may be a toiletting problem to work out a plan for.
                    Glad your mom is progressing .
                    Take care
                    Mary x

                    Comment


                      #11
                      Originally posted by DeniseB-C View Post
                      He is being made known to the local hospice
                      That's good to hear - they should be able to give you more information specific to your dad.

                      I'm sorry your dad is uncomfortable - check the local hospice's website to see if they accept self-referrals but he needs to be seen by palliative care asap and get meds to make him comfortable. xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        I'm just so sorry to read about your heartbreaking situation Denise.

                        I really hope your dad gets the right meds so he is more comfortable xx

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                          #13
                          It does sound like a very distressing situation DeniseB-C. I don’t really have anything to add advice wise but wanted to offer you a big hug and love. Unpaid carers as you and your sibling are very underrated but not by us. You are all amazing. I hope that you get support very quickly. Love Lynne xx
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

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