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

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 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.

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?

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.

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.

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.

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.

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

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.

I have had to move my Mum from a care home 10 minutes away to a nursing home an hour away. She was in hospital from January to after Easter 3 times in all. Each time she came out her health had deteriorated and the infections have caused vascular dementia. No places in nursing homes in my town. She had to go to the Nursing home straight from hospital. She does not realise she has moved, and she cannot remember being in hospital or her previous home. Sometimes she knows me sometimes not. I go twice a week and my sister the same. We look at photos and listen to music. Mum is totally immobile and incontinent. She has breast cancer and a natural fistula from her gallbladder. It is so sad to see her like this, but the home is wonderful. I was lucky to get a place there. Just wanted to say that even though she doesn't know where she is, she also thinks she has done wrong sometimes, and gets paranoid that people are looking at her and talking about her.

I think it's really common issue in dementia that people think they are doing/have done something wrong, I think it's part of the loss of memory. Repetition and stability are the key, make sure you visit at the same time of day, same day of week etc. to be honest I have found that doing an activity with a person is the best way to ensure they don't sink into a repetitive cycle of self hatred. So rather than just going to see her, go and have lunch with her or do singing with her, integrate into her life a bit.

Of course you can PM me numberlock I'm here to offer support, (but filee can probably offer you more practical help) I'm not about this afternoon, but will be able to reply later on.

I was just going to suggest contended dementia, I work extensively with dementia sufferers in my job.

I know a move can be very, very hard

If I can help at all just ask

How is your DM now? Has she settled in yet? Are you finding it more convenient to visit her regularly?

Sorry, too many questions! This message is really to say, I was thinking of you and hoped your situation has improved.