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

[Numberlock]

My mum is 87 and has recently been diagnosed with dementia. She lives around 70 miles away from me now but as her current care home do not cater for dementia needs, it seemed a good time to bring her near to me.

I have found a great home 5 minutes from where I live. I plan to move her 2 weeks today. This will give 2 weeks for her settle in before I go on holiday for 7-10 days. (She has no other family.) The alternative would be to wait till September which is too long.

The question is how do I help to manage the move? Most days she is too confused to have a conversation about it. However, yesterday she had quite a 'clear' day when I broached it, saying that I would really like her to come and live near me so I could visit her every day and so could her 3 grandsons. She just said that she wouldn't know anyone. I will continue on the same vein but it very much depends on how she is on the day as to how much she will be aware of what's going on.

Has anyone else had experience of this and how did you manage it?

Thanks. I want the home and everybody involved in her care to support a decision to give minimum intervention but will it be that easy? I've been looking at the mental capacity act and it's hard to define what could be construed as her best interests. (It's clear in my mind though.)

We will see what tomorrow brings. They say they will possibly get the crisis mental health team involved but this needs to be instigated by the GP.

Fortunately the GP seems very approachable and open.

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.

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.

Thanks for all your support, once again. Will see what today brings.

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.

Quite the opposite. pudcat, I find comfort in knowing I'm not alone. Please keep posting.

It's funny you say that about your dad. Mine died 23 years ago and my mum no longer recognises him in photos. But a couple of days ago she was just waking up from a nap when i arrived at the home said she had dreamt about him.

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.

I am so afraid of mum being laid in a bed half way between life and death for months on end.

I completely agree with you.

I am waiting to see what the GP has to say today. My mum was in exactly the same position 4.5 years again when she had bowel cancer (refusing drink/food etc). Obvously she pulled through then - she just started eating and drinking again one day - but she didn't have dementia at that time (the bowel cancer was the start of it).

So I'm reserving judgment on what decisions I may have to make, dependent on what the GP says.

My eldest two sons (twins) are off to uni in a couple of weeks. I'm trying not to let this over-shadow that and enjoy my last few weeks with them but it's tough-going.

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

Much appreciated Needmoresleep. The support I get on here is invaluable.

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

The GP visited my mum and rang me to update. He is going to adjust her diabetes medication so that the lack of food/fluids has the minimal possible effect and also increase the Alzheimer's medication in the hope that this will lift her mood.

I had a discussion about how they can get the medicine into her, given that she is not drinking or eating. He was vague on the subject - I wish someone would be more open. I can handle it.

The home have also promised to update me today, we'll see if they call.

It's going to be a long, painful process isn't it.

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 should have said that GP has also asked the mental health team to visit so I think I will speak to them as the next port of call.

Thanks Wynken.

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.

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?

I am meeting on Thursday.

I have asked for patches twice.

They said today that if she remains calm like she is at the moment that mum may be able to be discharged back to her residential home. I said "I don't think so. Where she was allowed to get into this state in the first place?" pah! I will be telling the doctor, and the dementia matron about how I found the call bell unplugged twice and how mum was left all day lying in bed with the door shut.

I will also remind them how dehydrated mum was when she was admitted, how she had a UTI that the GP could SMELL when he walked in the room and how it had not been flagged up that mum had not eaten since being discharged from hospital 3 weeks earlier. That I then had to INSIST on the GP being called out that day, instead of waiting "to see how she is tomorrow" and that the GP called for an ambulance there and then.

Bloody hell! Sorry! This isn't even my thread! Just had to get that off my chest.

Don't think it matters about whose thread - we all have the same problems. Mum was really bad today. She was in bed because she was very aggressive with everyone. She was paranoid saying everyone was watching her and she couldn't trust anyone. She accused the manageress of kicking her and was horrible to her. The food is poisoned so she is refusing to eat and drink again. They are checking for a UTI and they were giving some morphine as I left. Had a good weep before I started off home and prayed to Dad to come and get her. Hope you both have better news.

Had a good weep before I started off home and prayed to Dad to come and get her

Thinking about you, pudcat. Do you have some good real life support - friends/family?

Thanks number I have my sister who goes when she can but her husband is much older than her. He is 75 and is showing signs of dementia after a long illness. I have a hubby and 2 sons but none of them like to visit as they want to remember her as she was. And as Mum doesn't believe I am married it doesn't matter too much. What about you?

It's funny how you say about praying to your Dad.

DD 11 has told me that she prays to my dad ( her grandad) every night. A couple of times this week she has been weepy and saying that she misses him. I think that is because she is seeing my mum like this and it is bringing everything back about when my dad died.

She has never known mum without the dementia and has not had much of a relationship with her. And yet, when mum was most nasty and agitated last week DD was the only one of us mum trusted. She kept saying "you're nice, I know you're genuine" to her. I wonder if it is too much for DD though, I have had no choice but to take her with me to the hospital but I will be glad when she's back at school next week so she doesn't have to come.

How did you get on today Downton

I have updated on my thread Pudcat.

Numberlock how are you? Has the home updated you. My Mum has another UTI. So that explains her agression and worsening confusion.

Hi pudcat thanks for the message. The GP is involved and also the mental health team so at least everyone is working together.

My mum still won't eat and drinks very little so there's no much that can be done in that respect, other than to support her decision. She has lost a lot of weight. How long can you survive without food?

The only change is that her mood seems to have stabilised a little so we have had some nice time together during my visits this week. She is no longer crying and we have had some nice evenings listening to music and looking at old photos. She has even been telling me stories about some of the people in the pictures which date back 50+ years.

In some ways, this makes it all worse.