Moving mum with dementia between care homes (70 miles away)

This is dreadful if they are not trying to give any relief. At least with Mum they gave her IV antiBs in hospital and in the home she is given morphine patches. Downton can you arrange a meeting with the doctor?

This is also a problem we are facing with mum. She refuses meds most of the time- even in hospital. They were still giving her paracetamol as pain relief and because mum refused it she was left without any.

The doctor has cut all her meds back to just two, there are just some things there is no point in. It is still hit and miss. I have been asking all week how they are proposing to give mum the meds ie anti biotics for the UTI, Alzheimer's meds, anti depressants etc, they just shrug.

So I do worry about a home managing it. But we are not there yet.

So sorry to read this and what you are all going through. I don't have any wise words of advice other than to try to get any concerns about a home in writing. I read a thread on the Alzheimer's forum where all concerns were verbally communicated and the Home denied they had been made.

Can you ring the GP Numberlock and say you're still not clear as to how they can get medication into her and would like to know specifically how this is proposed ?

I also fear for them deciding mum can go into a nursing home and her being discharged
Your Mum cannot just be discharged into a nursing home. With Mum I kept the Care home in touch with her progress in hospital. One day I went to update them to be told that no way could Mum go back there. I was gob smacked. I got in touch with SS who told me to go and look at nursing homes. Now whether this is different because Mum is funded I do not know. I rang several here but all of them had no funded places or wanted top up fees to be paid by me. I worked out I could only afford 5 weeks at £50 a week so that was a no. The manager of care home helped me find one in a town 30 miles away run by same company and they agreed to take Mum with no top up fee. In the meantime SS said to clear Mum's room in 48 hours. So sad she had been there 6 years and was just round the corner. Mum was assessed in hospital and they kept the place for her until hospital said she could be discharged. She was still poorly but hospital said it would be better for her to be in the home. I had been going every day to try and get her to eat. 30 minutes journey there and astronomical parking fees. The hospital arranged the ambulance to take Mum and kept the N H informed and N H rang me when Mum arrived.
HTH

Not a lot to say. Just to all three of you and anyone else in the same position.

I am so afraid of mum being laid in a bed half way between life and death for months on end. I see the same relatives visiting the hospital every day. All with the same lost look in their eyes. We smile and nod to each other, all just acknowledging some understanding of what we are going through.

There is a scheme here called Butterfly care. A patient with a known dx of dementia has a blue butterfly above their bed. It is there to let staff know without asking or checking that the person needs care appropriate to someone with dementia. It is very clear to me that it varies greatly between the staff as to who is familiar with it and who have not had the training to deal with dementia sufferers.

I also fear for them deciding mum can go into a nursing home and her being discharged. Because of our previous experience of being let down by the home and your experience in the new nursing home Numberlock I worry about what comes next. I have asked before what happens to those who have no one to speak for them and was told they are appointed an advocate. The problem is that even with my questioning everything, asking for help, being there every day, mum was still left in pain, without food or medication, presuming a doctor had seen her and wondering why she was getting worse and worse.

All three of us seem to be in the same boat. We have to make sure that the right thing is done. The trouble is that there has been such bad press about the Liverpool Care Pathway being not carried out properly that I am sure some health authorities have gone too far the other way. Surely end of life care which is done with care and compassion must be best for our suffering Mums. I know we do not want to lose them but it is more distressing to see them like this. I want to remember my Mum as having a laugh with me. My Dad died when I was 6 and the last lingering memory I have of him is being carried down the stairs on a stretcher in a lot of pain. I don't want this for Mum. She keeps saying she has seen my Dad, so maybe he is get ready to fetch her after 60 years. She never married again. Sorry I have rambled on. Please feel free to ignore but it is a relief to find others in my position.

Oh dear. That is just what happened to us when mum went back to the residential home after her hip fracture. Unfortunately as it was not nursing they were not even completing the minimum of tasks.

Whatever happens now with mum, whether she leaves hospital or not, I am going to make clear there is to be no interventions, bar, pain relief and sedation if she continues refusing. This is just so distressing, I don't think any of us want repeated bouts of this.

I didn't have any problems with minimum intervention or no resussitation decisions. The nursing manageress has said that in view of Mum's cancer, immobility, incontinence, vascular dementia etc it is the kindest thing.

Mum had a GP visit the day after she arrived at the new home. I think you have to wait for the doctor to assess her. Can you be there when he visits or are you working. Regarding the food/drink/meds decision - this is what my sister and I had to discuss. We all decided that if Mum refused them then so be it. We did not want her back in hospital on a drip which would only prolong her suffering. You have to decide what is best for your Mum. The nurses at the home said that if Mum does stop again, then they offer palliative care - morphine patches and maybe injections, personal care (washing, changing pads etc) regular turning and repositioning in bed and mouth care to stop her getting sore. They have said some relatives insist on all possible interventions and then have been so upset when their relative has passed alone in hospital.
So it is a hard decision to make. You have to ask yourself whether you want your Mum to suffer. The diabetes does need checking though - that could be the cause of her lethargy and depression as well. Hope this helps- it is a hard thing to think about.

Oh dear how distressing. The trouble is no one can watch them 100% of the time can they?

Well it was good while it lasted. My sister has been today and Mum has bitten the end of her finger off in the night. She has done this twice before when she was in hospital and confused. The first time she broke it as well. I should have realised yesterday and said something as Mum kept saying she had some rubbish in her hand. I just pretended to take it off her and throw it away. Think back to January that's what she thought then, but it had gone clean out of my mind. I wish I had remembered, then the night staff could have been warned. Sister says she keeps trying to take the dressing off.

I had a good visit today - no aggression. Mum was trying to remember names without success, so I asked her what my name was. The answer had everyone in stitches. She said " Do you know pudcat I can't bloody well remember". And she was OK for me to leave today. So for once i did not cry in the car.

Hope you are having a good weekend Number. That is what I was trying to say, that they should give her time and not keep ringing you with problems you cannot solve. They are the professionals and should have strategies in place to cope with these problems. Your Mum cannot be the first to be like this.