Carers of people with dementia
Caring for a person with dementia from a distance
The onset of dementia may be very gradual, and where the person concerned lives alone with members of their immediate family living separately, often nowhere near, it may be several years before the extent of the problem is recognised. Many such people are used to their independence and any suggestions from their family that they are not coping adequately may be met with hostility or denial.
The family meanwhile may be wholly or partly unaware of the way things are going. In some cases they may not have been close at the best of times. In others, distance or other commitments, to do with family or work, provide obstacles to regular contact. Sometimes it is only when some incident has brought the situation to their attention that they discover the extent of the problem, which may have been present in the preceding months or years. In some cases, the family members may not have a close relationship and therefore, there may not have ongoing communication at all. Other family members may choose not to be involved in caring for a person after they are diagnosed, for their own reasons.
Here we discuss the worries experienced by carers as they became aware that their parent was having problems with their memory but who had accepted or given in to their parent’s wish to continue living independently.
Several carers describe the crisis that convinced them that their parent was in need of care. One daughter who had been feeling guilty every time she left her own home to visit her mother decided after her mother had a fall down some stairs that she wanted to be with her and actually left her husband to do this. A daughter whose mother lived in Paris began her attempt to arrange care for her from a distance after an episode where her mother had been found wandering the street in a disorientated state. She describes the difficulties of trying to set up some sort of surveillance. Another daughter finally decided that her mother could no longer live independently after she had gone missing and had to be recovered by the police.
After their mother went missing he and his sister realised she could no longer live alone.
After their mother went missing he and his sister realised she could no longer live alone.
We'd had a, since things had first started two years ago we'd, we'd had her to stay with us at weekends and breaks and holidays more regularly, mainly my sister I have to say. But now we just thought we'd give her a bit of a break so we bought a, my sister went down and collected her and took her home. And that was the last time she was at home really. Because what we thought would be a sort of short respite just eventually, that was it, things, she'd stopped being able to cope.
Several carers described their mothers as being both resistant to, and suspicious of, offers of help making it very difficult for them to set up any effective care plan. Arrangements for transport to attend day care centres or for provision of meals on wheels were frequently defeated by the fact that it was impossible to ensure that the person would be home at the time they were available. As one daughter commented, meals-on-wheels could ideally have had the double advantage of giving her mother a meal but also checking to see that she was OK. Nutrition was a constant worry for carers visiting irregularly who found mouldy food in the fridge.
Had problems with Meals on Wheels and suggests the service could be used to keep an eye on people living alone.
Had problems with Meals on Wheels and suggests the service could be used to keep an eye on people living alone.
The real point was not so much the fact that she couldn't get Meals on Wheels, but that they, but nobody had made any contingency plans in case she couldn't. I mean, after all, if she needed Meals on Wheels, if she needed a meal and I wouldn't have thought it would have been impossible either to have worked out a procedure by which say, she could have been left something or somebody could have come back at a time when she was there. Or, somebody just review the situation. But as I said, it was Meals on Wheels or nothing.
And the fact that there was nobody close if, it just didn't make sense to me. I think that was the real problem, not so much the fact, I mean after all Meals on Wheels is a voluntary organisation, it's more the fact of no contingency plans when they wouldn't provide a meal. And I don't know whether Meals on Wheels reported back or whether the social worker knew. I mean we certainly didn't get any feedback as a family as to why a meal hadn't been provided.
I was talking to, a school friend of mine whose sister who had been involved in this field. And she well part of the idea is that Meals on Wheels can check up on the person concerned. So they just left a meal, they wouldn't do that. Well, that's a good theory but to me it's not the primary purpose of Meals on Wheels. And again if they are checking up on the person concerned then there should be some sort of reporting back situation, or some sort of liaison within organisations.
She and her sister tried to make arrangements for their mother to ensure that she got proper meals.
She and her sister tried to make arrangements for their mother to ensure that she got proper meals.
It was things like getting her haircut and getting to the dentist, we never quite discovered how you sorted that one out. We had a care worker in for her, but my sister suggested we had her in for the evening, because we knew at least that mother was home in the evening. But mother wouldn't let her into the kitchen, though she was prepared to come and cook for her. So mother didn't really get fed which meant that we had, my sister and I, to go down once every three weeks at a weekend and take mother out for a meal.
So at least she got fed once every three weeks and we would take food down with us. But there again, it was really difficult to know what food to take, because my mother wasn't coping with, she'd got a fridge/freezer, but she kept turning it off which meant the stuff was thawing out and then she didn't understand the frozen food. Her care worker put in ready meals for her and she would take them out of the freezer and say to me 'Sylvia, do you want some beef in mushroom sauce with your cup of tea?' And then she'd put them back in the freezer again. So we were going screaming.
What else was it? One time the care worker brought her a container of soft cheese, in a sort of margarine tub, a flat one, so mother thought it was margarine and tried to fry in it. So she was trying to cook me eggs and bacon, cooking it in soft cheese. She didn't understand best by dates. Because we think that people are competent coping, but they weren't. One time when my sister was taking her out, she had the most appalling diarrhoea. My sister thinks she had eaten bad food. So we couldn't do anything about that. So we tried to take down things for her to eat which would last and which couldn't go off, so it basically meant cheese and fruit.
Many carers tried to make arrangements that would allow their parent to continue living alone. Where the carer has their own work to do or other responsibilities keeping them at their own home the fact that the various services which might be available only operate during weekdays can be a serious problem. There were requests that Alzheimer’s Society meetings sometimes could take place at weekends and that social services should be more forthcoming with out-of-hours contact numbers.
Difficulties communicating with care workers. Regional differences in provision of care.
Difficulties communicating with care workers. Regional differences in provision of care.
But again, being long distance carers, we normally went down at weekends because its about a hundred and thirty miles from here to [town name] everything was closed down. Couldn't get in touch with the social worker, if you want to find out all about different organisations, didn't know about it because I didn't even know where to go to find out about them.
Because although I know the system here in [town name], it's surprising how different it is in different areas. And [town name] being a big city has divided everything into sections, so that housing wasn't done centrally at the council house. It was done in a sort of housing office, somewhere in the area. Which makes sense to [town name] people but doesn't make sense to outsiders, if we wanted to sort that out.
So, again, I just didn't know where to go for help and the Alzheimer's Society, I'm afraid, and perhaps I shouldn't be saying this on tape, but wasn't very good in [town name] at that time. There was an excellent one in [town name] when mother moved there but the [town name] one. Again I think it had originally been affected, I think by being in [town name], I don't quite know. So we didn't get much help from them.
I also mentioned the point about carers, you know it would have been lovely to have gone to a carers' meeting in [town name] but they're all during the week. And I did actually say at an Alzheimer's Society meeting here in [town name] in my home, we could he very occasionally have Alzheimer's meetings at weekends because at least it would have helped somebody like myself.
Because I am sure it would have helped us to find other carers and I was sent once details of meeting on a Tuesday evening, quite close to mother, but for a Tuesday meeting, it would have meant going down Monday, or perhaps going down Tuesday, coming back Wednesday. That's two days out of the working week' you can't afford to do it.
I've been early retired now about six years and, quite frankly, if we hadn't had my early retirement we couldn't really have coped with mother. It wasn't really the fact that we could rush down more quickly, it was more the fact that I was here to take the telephone calls during the day or phone up the social worker during the day.
I didn't actually visit her a great deal during the week, mainly because I'd got my own commitments, but it was useful being able to do so because occasionally we'd have a meeting with a social worker on a Monday Friday evening. But, again, the social worker would have long holidays and we never quite discovered what happened when she was on holiday. We weren't given the emergency phone number for out-of-hours times, which we could have given to her neighbours. So, yes, we couldn't have coped without my early retirement.
The choices available to the distance carer may all seem impossible. To move the parent in with them may seem to be too much of a stress for the family and the accommodation may be unsuitable. The parent herself may be bitterly opposed to giving up her freedom and unable to appreciate the supposed advantages of living with her family. Moving the parent to live nearer to the carer may in some circumstances make the problem worse.
Why her sister felt that it would be impossible to agree to their mother living close to her.
Why her sister felt that it would be impossible to agree to their mother living close to her.
She wanted to come back in fact she implied she wanted to live round the corner from her and my sister said 'I can't cope.' Because mother would, be likely to turn up on her doorstep, at any hour of the day or night and she was a bit inclined, being a doctor also, she was a bit inclined to sort of tell my sister's medical friends what to do. It was, it was she and my sister were in some ways too much alike.
But also you know my, my mother wouldn't recognise that my sister had a separate life of her own. When she did previously live in [place], she used my sister's hairdresser and told the hairdresser things about my sister and, she, she'd go, she'd use my sister's bank and I think, you know, cash in on that.
I, [my sister], [name] just found it too difficult. I think if mother had been prepared to stay at a distance, or had been say prepared to live half way between the two of us. But no, she wanted to move back to [place]. And, she didn't want come here to [county], she wanted to move back to [place]. And we just felt that really, [my sister] felt that really she couldn't cope, she said she found it very difficult when my mother had been there previously.
We did actually try and investigate sort of residential accommodation for her in [place], in the [place] area but she wasn't prepared to, to accept that you know. She wanted to live, as I said, just in a house just round the corner, which we felt we just couldn't cope with that. And so it's, my sister was the person concerned it was, her decision, which I accepted.
Where there was more than one sibling involved in the caring they would tend to share out the responsibilities. One who was nearer or who had more free time might do most of the visiting while one who was less able to do this might take over the paying of bills.
Many carers expressed gratitude to and concern for neighbours without whom the shaky situation might not have been able to last as long as it did. The daughter whose mother lived in France actually made a point of contacting the neighbours to include them in the network of people watching out for her mother while she kept in contact by telephone. Occasionally there were concerns that the neighbours might be hostile or even take advantage of the elderly woman. At the same time there was sometimes real anxiety that their mother’s erratic behaviour might actually be risking danger to herself and her neighbours.
The telephone can be an invaluable means of keeping in touch but can prove wearing when the calls are incessant or worrying when the caller may or may not be ‘crying wolf’. Meanwhile the carer struggles on, visiting as often as possible as the situation becomes more and more hairy often ending with an enforced admission to hospital or respite in a care home as the only solution available.
Describes the problem of trying to decide what to do when she received distress calls from her mother.
Describes the problem of trying to decide what to do when she received distress calls from her mother.
Then as I said it was the telephone calls. We also had very little support from my mother's doctor. Again, I'm not quite sure why, but sometimes I'd get telephone calls at half past nine in the morning from mother saying, 'I'm dying.' I'd say to her, 'Well, I'm sorry, but I'm three hours journey away, what do you expect me to do?' I'd phone her doctor and say, 'Could you call?' and the doctor would never phone me back. Which is all very fine, but I needed that reassurance.
Last reviewed November 2023
Last updated January 2024
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