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 for posting, pudcat. It's horrible isn't it.

Yes it is horrible and the guilt of having to have Mum looked after does not go away. I did try but when she stopped walking and I couldn't lift her after she had a long spell in hospital 7 years ago, this was the only course I could take. Luckily the care was a lovely one and so is this one.

Now they are talking about putting my mum on anti-d's. She sobs uncontrollably all the time, won't get out of bed, doesn't want to eat or take her meds. From cheerful and contented to this in just 3 weeks. It just doesn't seem right.

Wll the anti-d's really have any effect?

Anti-D's will definitely have a positive affect.

My Mum refused to eat and drink and take meds for the first month she was in the new home. They tried every day, then suddenly one day she let them get her up. Once she was up she ate and took her meds. Not every day at first because it tired her out, but now she is up every day. She doesn't eat much, but she is drinking more now unless she is in a mood. So give her time. Dementia is a horrible disease, and our Mums must feel very frightened during the times that they are lucid, because they must have big blanks in their memory. As long as the home is caring and considerate do not give up hope. If they can get her to take the anti-Ds that should help.

Sorry you are going through this.

We are further on than you with the dementia. Mum is in hospital right now but when/if she is discharged she will have to go into a nursing home.

Mum is dreadfully depressed, she has been on medication for this for years but is refusing to take it at the moment. She has not eaten for weeks and barely drinks.

A move is very difficult for them to cope with and there is usually some deterioration after a move. Sadly I cannot offer more advice than has already been given. I am wading through a mire of helplessness with mum at the moment so I know how you feel. I am always willing to chat though.

The feeling of helplessness is so hard to bear. As the lovely nurses at Mum's home say, no one can force our Mums to eat, drink or take their meds. When Mum was in the hospital I went every day to try and get her to eat some dinner. She has lost a lot of weight. My sister and I have decided that as Mum has cancer and other problems that we no longer wish her to go into hospital. The doctor will treat acute problems like UTI with antibiotics, but other things which need invasive procedures will not happen. Mum is too frail now to survive any major op. So we would sooner her stay where she is and be looked after more personally. And we can visit whenever we want. We had a lovely BBQ there on Saturday with a singer doing 50 and 60s songs. Mum loved it and was swaying to the music. She was so happy. But she could not remember it the next day. So sad.

Thanks so much everyone.

I've posted on your thread and am following it with interest/sadness Downton. Likewise I'm always happy to chat if there's anything I can do to support you in return.

pudcat It helps a little to know this is 'normal'. I'm fortunate that she isn't in hospital so at least we don't have the problem of hospital staff leaving food and drink out of reach. They always have staff with them at meal times to assist them.

By the way, everyone, don't forget we also have to look after ourselves in all this. Thanks again for the support.

Can I ask for some coping mechanisms you use for visiting your relatives with dementia?

Up till her move 3 weeks ago, my mum was happy to sit and look through photos, listen to music, go out for drives, to the park, for an ice-cream, sit with other residents in her home. "Contented dementia" in other words, to quote the book title.

Now I find it so difficult as there's nothing she wants to do, nowhere she wants to go, nothing she wants to look at, talk about etc etc and I dread the visits (please don't flame me) because of the crying, behaviour issues etc. It's also very hard for her grandchildren to visit her (don't flame them either - they still go!) and know how to handle her in this stage.

Also, how do you stop yourself feeling guilty if you don't go every day? I've only missed 7 days/evenings since she moved and that's cos we were on holiday. But that's only a few hours a day, how do you stop feeling guilty that there's no-one else visiting her the rest of the time? (No other friends/family.)

It's starting to get on top of me and that makes me feel guilty as I know there are lots of people in much worse positions.

Someone come and talk some sense into me please.

First of all don't beat yourself up.

As you know, moving someone with dementia can be extremely distressing and unsettling for them. It is normal for them to take a nosedive at this time and that can continue for many weeks/ months even.

Secondly- the visiting. You can only do what you can do. For 7 months this year I had to be in London most of the time and could only get to see mum once a fortnight. My sister is the only other person around and she is very hit and miss. I also had a holiday booked just after mum fractured her hip. I still went- me and my family needed it.

Up until the fracture mum had "contented dementia". Now- well you know some of it. I try to stay calm, I agree with what she says, I don't tell her I'm leaving. Sometimes distractions work but if mum has got something stuck in her head and the conversation is going round and round I find it easier to walk away for a bit. Sometimes I tell white lies, depending on her mood, like tonight she wanted me to call the police so I told her I would and she was happy with that.

You don't ever stop feeling guilty. I cared for my dad in my own home until he died. He didn't have dementia and that was hard enough but i still feel guilty that i could have done more/ done things differently. He never stopped telling me how patient I was and how grateful he was. I know I can't do it for mum, I just couldn't cope with her, so I do what I can. she tells me all the time that she never just dumped her parents, she nursed them at home, she loved her parents. That is fine but my life is different now and the immense strain of nursing someone at home is something I can't put my family through again. Doesn't stop the guilt though.

As Downton says the guilt never goes away. The first month of being in her new nursing home, Mum never got out of bed. She was too frail and ill and she refused to do so. Now that she is in the lounge visiting is better. But we still have bad days. Mum rambles on about the past as if it is today. Like she asks is I have seen my Dad today - he died in 1953. But she swears he is there and tells me where they go and what he says. Same with her mum and Dad. The staff say just to listen and not contradict her. She still gets paranoid - she reckoned someone had thrown their dinner over her yesterday! I tell white lies as well. I used to think I had to visit every day but it is probably best if only a few times. Then they can join in with activities if there are any. My sister goes but I never know when as she always seems to have something crop up with her husband - he is 75 and showing early signs of dementia. When I leave Mum can get really nasty saying I don't want her etc even though she doesn't really know who I am. So now I say I am off to the shops - does she want anything, or I am going to have a chats with the nurses. Hard I know but once I have gone she has forgotten me. I sign out and then usually have a good cry in the car before I set off home. I hope this helps you.
The other thing I feel really guilty about is when Mum has had a bad day and I know she hurts, I find myself wishing that she would not wake up the next day. Am I so dreadful for thinking this?

Thank you both.

Yes it does help.

As I say, it's early days and I need to get used to the new routine. In her old home (70 miles away), sometimes I was only able to get there once or twice a month but I didn't worry as I knew she was happy between visits. It also helped having distance between us. Now she's less than a mile away so I feel like I should be dropping in all the time.

I need to get into a regular routine of maybe once in the week and once at weekends.

(It will settle down naturally anyway when the schools go back and come September I will be back into my schedule of lots of work travel so won't be available as much.)

I recognise everything you say about the visits pudcat and use a lot of your tactics when it's time to leave etc. (Ditto the having a weep afterwards.)

The other thing I feel really guilty about is when Mum has had a bad day and I know she hurts, I find myself wishing that she would not wake up the next day. Am I so dreadful for thinking this?

Not at all, quite the opposite in fact. There's nothing wrong with wanting an end to the suffering, especially given that the quality of life for our mums is so low.

I'm now quite clear in my mind on what I will and won't allow in terms of medical intervention as the dementia advances. If her not eating/drinking/taking meds is her way of telling us that she's had enough, then I will support her in that choice. Hindsight is a wonderful thing but looking back I would have made different choices about medical intervention, knowing what I know now.

I hope you all have something nice planned for the weekend to give yourselves a little bit of respite.

I am in the same boat with the visiting. I will not be able to maintain going every day. Sometimes I think it is pointless anyway.

My brother lives abroad and can only come over twice a year. He only left from his latest visit on Sunday, but mum does not know he has been. She thinks she hasn't seen my sister but I know she was there 3 nights this week. I presume she has forgotten that I have been when I leave. If I go out to take a moment or speak to the nurse mum welcomes me back as if I have never been there.

I think we need to give ourselves permission to have some time off, Downton.

I've just had a call from her home telling me how she's reluctant to join in anything. (I think these calls are pointless, what do they expect me to do about it? Other times they'll ring me to tell me she's not eating, not taking her meds... )

I had a good chat with a friend last night who's been in a similar position with her mum so this weekend I have some nice things planned alongside the visits. I'm going to detach from it as much as I can for a few hours each day.

I hope you can do the same.

Numberlock The home has to give your Mum time to settle in. It takes ages. The nurse in charge at Mum's home tells me how things are when I visit, (good or bad) but they only have rung once when I was ill and could not go for a while, and that was to tell me that Mum had finally gone into the lounge for an hour. They were so pleased and they wanted me to know.
Downton we have to take time for ourselves. I was exhausted going everyday for a month to the hospital to try and feed Mum at lunch time. The nurses were good but they do not have the time to sit for an hour feeding tiny bits at a time.
I had a good visit yesterday - Mum actually knew me. We are hoping to go away to Yorkshire for a few days in a fortnight. So fingers crossed.

I understand that, pudcat. I feel they are ringing me though to present me with a problem rather than a solution. I feel it could be done in a more structured way with suggestions, options, likely outcomes, reassurances etc.

Anyway, it's time for me to go home now, I hope everyone has a good weekend with some downtime.

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.

Thanks so much for that. x

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.

That's good to hear, pudcat.

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.

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

Sorry to hear that pudcat.

Things not good here either. I requested that my mum's new GP visit just after she moved in, to check her over and make sure all notes/medicines extra had been passed on correctly in the move. That was 3 weeks ago and I foolishly assumed the GP had been but he hadn't.

So even though she's not been eating, drinking and refusing meds, I mistakenly assumed that the GP was aware and it was being managed.

Even worse, the home say they have been 'trying' to get an appointment with the GP for a week. Funny that when I rang this morning I was able to get an appointment for tomorrow.

She's 87 with diabetes and not eating or drinking... Why wasn't the home escalating the need for a GP visit? I would have taken matters into my own hands' sooner if I'd known.

I feel I've made a bad mistake with this new home, it even took 2 days for them to ring me back with an update.

After the visit tomorrow, will I have to make choices about what to do about food/drink/meds? They say that I will have to make decisions about what's in her best interest. What if our views differ on this?

I don't think I'm cut out for this.

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.