Feeling of panic

Grable

Registered User
May 19, 2015
215
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I've posted before about the situation with my mother: she's got vascular dementia and I live 200 miles away from her. I can't move her down here because a) she wants to stay in her own house and b) my brother and her grandchildren live fairly close by. She hasn't actually seen the grandchildren since Christmas, when they spent 3 or 4 hours with her, but if she came down here it is likely that she would never seen them. My brother does pop in for 20 mins or so two or three times a week, but he has a long commute to work and is busy with his family life, so can't do much more and stay sane. His wife and my mum have never got on, which explains the situation with the grandchildren, too.

Mum has begun to forget how to cook. I was visiting last week and wanted to see how she coped, so left her to make the dinner one day. She managed to peel, chop and boil the spuds, make parsley sauce (when I had measured out the milk) and then called to me to help her. She had a couple of piles of peas on the counter and didn't know what to do with them. I told her she needed to boil them, but she didn't know how. When I suggested a saucepan, she couldn't think where to find one.

Yesterday my brother phoned me to ask me to call Mum - apparently she 'couldn't get it', but he didn't know what. It was unclear what she wanted to do, but I think she wanted to call me but couldn't work out how - although she had called my brother to tell him! I gave her instructions on how to dial my number, which she tried to do while she still had me on the line. When she put the phone down, she tried to phone me, but couldn't, so I phoned her again and she told me her phone wasn't working.

This morning, I woke up with a complete knot in my stomach and I'm just despairing about what to do for the best. We've got a carer starting tomorrow - going in a couple of times a day to help her take her pills and be a point of contact, but Mum's really not happy about it and says that, if they don't get on, she'll cancel the contract.

My brother would be happier, I think, if Mum were in a home - but she doesn't want to go, there isn't one available in her village and I can't help feeling that the longer one can retain some independence the better. However, I don't think Mum's having much of a life at the moment at all. She's lost a lot of weight over the last year, too.

I'd really like to hear from anybody else who is caring over such a distance. How do you cope with the constant anxiety? How do you get rid of the permanent anxious knot? And how do you stop being a miserable burden on your own other half?
 

RedLou

Registered User
Jul 30, 2014
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I was a long distance carer - 1000 miles and a plane ride away. To be honest, I never got rid of the knot, the sleeplessness, the venting to my OH. I tried hard to look after myself and find mental tricks to help, to go for walks, to meditate etc.
I ended up having to be very honest and quite assertive with my father to get him to accept carers coming in. In the event, they only kept him independent for a few months longer, but it may be different with your mum. Good luck.
 

marionq

Registered User
Apr 24, 2013
6,449
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Scotland
One of the day centres my husband attends is attached to a care home. When I went on Thursday to pick him up he and some of the ladies and staff were dancing. There were boxes of flower arrangements the ladies had made for Valentines Day. They had eaten well and were enjoying each other's company.

Sometimes we imagine a care home is the worst choice but when things are breaking down and everyone is unhappy with the current situation then we need to think of an alternative. I would seriously protect her by looking for a nice care home perhaps a small one where she would have company and feel safe and able to enjoy your company and your brothers without the anxiety.
 

fizzie

Registered User
Jul 20, 2011
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Grable you were thinking of moving her nearer to you. If you are going to do then probably now is the time, find out about some of the local things and if there is extra care housing etc and then sell it to your mum on that basis and that you would be able to see her more often. I was advised that if you leave changes too long they become impossible and sometimes you just have to bite the bullet. I am only saying this because you said that you were thinking along these lines.
 

Grable

Registered User
May 19, 2015
215
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Thanks for the comments everybody. Yes, I would like her closer to me - and I think that may be what we need to do at some point, but I'm just not sure we're quite there yet. In spite of everything, she still goes to the hairdresser's - on two buses - one a fortnight, for example. She also has a brother who is dying of cancer in the same village and is totally unwilling to leave while he's still alive.

I sometimes think she'd be better off in a good care home. Then at other times I think she's better in her own house, where she feels safe. She's been in the same house for over 60 years!
 

fizzie

Registered User
Jul 20, 2011
2,725
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oh that is a difficult one but totally understandable that she doesn't want to leave her brother - that may be crunch time.
 

arielsmelody

Registered User
Jul 16, 2015
515
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If your mum has enough savings (apart from the capital tied up in her house) to pay for care for a reasonable amount of time, it's probably a bit soon to try to move her if she doesn't want to - and it sounds as if she has capacity, even though she has memory problems, so you probably couldn't anyway. Have you got LPAs for finance and health and welfare set up - if not, you need to get them organised asap because it will be so much more difficult if it needs doing later on.

You need to keep encouraging her to accept carers and perhaps a cleaner - once that's in place, it is much easier to increase the number of visits etc as time goes on.
 

Grable

Registered User
May 19, 2015
215
0
That makes sense, Ariel. I'm not sure how much capacity she actually has now - and how do you know when she doesn't have capacity anymore? We've had the financial PoA for a while now, and I sent the other one off last week, having finally managed to get the three of us together to get it signed and witnessed.

How is the decision about capacity made?