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Carers of people with dementia

Caring 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.

The problems related to the gradual onset of dementia and the events leading to the realisation of the problem are dealt with elsewhere. 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.

 

Had to organise emergency care for her mother who lived in Paris.

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Had to organise emergency care for her mother who lived in Paris.

Age at interview: 54
Sex: Female
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The police had taken her to the A&E where she was assessed. I called the A&E. My first encounter with a French hospital was rather a negative one, to put it mildly. After being transferred from department to department and a few mix-ups later I finally spoke to the person who had looked after my mother that morning. 

She said 'Your mother has been discharged and sent home earlier on. 'I was furious 'Are you telling me you discharged my mother, you discharged an 84 year old woman living on their own, who arrived to you disorientated?' 'She was orientated by the time she left.' I was told. 'What about her physical state, was she dehydrated, well nourished or emaciated?' Silence, nobody seemed to have thought about that. I hung up. I needed to think, I was in a state of extreme anxiety. It was late afternoon by then.

I rang my mother, no reply, thoughts were rushing through my mind, did she make it home, if she did has she fainted from exhaustion or fallen down or was not able to reach the phone. I really didn't know. 

Eventually I managed to get hold of a neighbour's telephone number, I didn't know her very well, I had only met her near the lift and in the street a couple of times when I was going out shopping with my mother, who introduced me to her. I knew my mother liked her and that's very important. I was quite embarrassed to say the least but what else could I do, it was the only alternative to calling the police. 

I explained the situation, she was very nice and understanding, she said she would go and knock at my mother's door to see if she was there. She also confirmed that my mother looked very thin and confused and everyone was worried, i.e., the other neighbours and the concierge, but did not know how to contact me.  

If they had shown any concern my mother would say she was 'OK just a bit tired'. Some time later, which seemed like an eternity, the phone went, it was the neighbour with my mother, she told me my mother had answered when she had knocked at the door but was unable to open the locks. She had to guide her step by step and finally she managed to open it. then. She also found the two telephones were unplugged, no wonder there had been no answer when I rang; it rang on my side but not at my mother's end of course.

I spoke to my mother at last, tried to reassure her and said I was coming as quickly as I could. Next day I phoned my mother's GP and made an appointment with him and asked him to visit my mother. I also said that I was coming and would take her back with me to London, he agreed, it was the best thing to do at the time.

 

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.

Sex: Male
Age at diagnosis: 65
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And he called the Social Services who weren't available, so he called the police and they went round to check on mum and she was back home and OK. This was one of the local shops, she used to get a bus into town to go to her other banks, but wasn't able to by then. And they phoned me at work and at that stage I talked to my sister on the phone and just sort of said 'Look, this isn't working, we've got to get her up to stay.'

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.

Age at interview: 60
Sex: Female
Age at diagnosis: 80
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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.

Age at interview: 60
Sex: Female
Age at diagnosis: 80
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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.

Age at interview: 60
Sex: Female
Age at diagnosis: 80
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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.

 

Describes her reasons for rejecting the option of having her mother to live with her.

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Describes her reasons for rejecting the option of having her mother to live with her.

Age at interview: 59
Sex: Female
Age at diagnosis: 82
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I don't know what it must be like as a husband or wife caring for their partner but to care for your parent who does not live with you, you have the decision as to whether they should live with you. That is influenced by your own circumstances and their own, their own wishes and the wishes of anybody else who happens to be living with you.

Personally I think when one is married, the first priority is the partner to whom you're married - or committed to I suppose in this day and age - and the parent has of necessity to be the second priority, it has to be like that. Otherwise you rescue one relationship, well one person at the expense of another; that's all very easy to say but it's the doing it, its very difficult. I had great difficulty remembering that my first priority must be my husband when my husband was hale.

It was decided that the house that we live in is not suitable to have my mother living here in her - then - condition. Although there is a downstairs toilet facility, there are lots of little steps in awkward places. It, she would have ended up either a prisoner in her own room or sitting with us the whole time, neither of which would have been a good idea. As fond as my husband is of my mother, it would be putting a great strain on him, and we have a relationship of our own which is important to us - after many years of marriage its as important as it was in the beginning, it requires nurturing, not threatening it, really.

 

Describes her distress at not being able to persuade her mother to come and live with her.

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Describes her distress at not being able to persuade her mother to come and live with her.

Age at interview: 54
Sex: Female
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The whole household was upset, they could see that I didn't know what to do, they also realised that I couldn't take her back, that it was a question of time before something happens to her. On the other hand I could not keep her here, I felt like a kidnapper, I mean for three months I really felt I'd kidnapped her. She wouldn't stay.

The tension was really getting bad, I tried to calm her down, I tried to talk to her, I tried all sorts of things but nothing worked.  Eventually I was working myself in a state and that was not good for her or for me or for anyone else. What was I to do, I cried many times completely at a loose end. How could I take my mother back home, I knew it will start all over again, I could not cope with the idea of her being in danger. I felt it was criminal, knowing the situation, to take her back. How many times was I supposed to help her out of a crisis only to start again a few months later?

We had to move forward. On the other hand I could not really keep her under the circumstances. I truly felt as if I had kidnapped her. She had to be co-operative for me to be able to help her otherwise I was not caring for her in a positive way. I was only keeping her out of trouble. 

What I wanted was for her to have a quality of life, to be able, not to worry about eating or cooking or doing her paperwork, or doing her shopping, that all this could be taken care of. And she could concentrate basically on the things she could still do and I could help her to regain some memory with talking, with pictures, but she also had to help me with that. If she was opposing everything I was doing or saying I couldn't do anything. At the same time she was completely refusing to accept or she couldn't, probably she couldn't accept that she needed help.

 

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.

Age at interview: 60
Sex: Female
Age at diagnosis: 80
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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.

 

Describes how she and her sister share the responsibilities in caring for their mother.

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Describes how she and her sister share the responsibilities in caring for their mother.

Age at interview: 59
Sex: Female
Age at diagnosis: 82
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By this time I was doing all her shopping, all her washing. I employed a cleaner for her, who she paid. I was managing her pension. My sister was dealing with other aspects of the financial situation, she took all that on board because I had the physical side to do. 

Fridays became quite a good day, I'd set aside Friday afternoon and we would go shopping together and sometimes she was better than others, but she would walk with me and look at the shops and buy inappropriate things if I didn't prevent her. And I, but I did begin to think that we might manage a few years like this, again I had no idea what dementia led to, how fast it progressed, or slowly, or whether it was the same for everybody, you know I knew very little really.

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.

 

Describes how she was able to care for her mother who was in Paris through frequent telephone calls.

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Describes how she was able to care for her mother who was in Paris through frequent telephone calls.

Age at interview: 54
Sex: Female
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On my last day in Paris, it was like the old days, we had special food and talked and laughed a great deal. Next day I left for London after telling my mother not to worry, we will keep regularly in touch by phone, she seemed quite confident. I wished I felt the same but I tried to put a brave face on. Deep down I knew it was only a question of time before I had to come again. 

But this time I had the telephone number of all the neighbours, the concierge, the doctors, neurologist, social workers, etc. If things went wrong not only I will know quickly I could also get in touch with the right person or vice versa. I also made notes of important information especially for administration purposes. French bureaucracy is notorious for being demanding and very slow.

For the next two months I literally spent hours on the telephone with my mother daily, in fact it was like caring at a distance, she would phone me more often, either it was complaining about the home help or she needed to ask me where such and such papers were. Or guiding her step by step on how to use the mixer or other appliances, basically it was a question of reassurance and practical help. I would phone her to remind her of an appointment or what happened when she had seen the neurologist or her GP, find out the date of the next appointment, if I didn't she will forget. In fact I was acting as a secretary as well.

 

Describes anxieties about the neighbours and fears for their mother's safety.

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Describes anxieties about the neighbours and fears for their mother's safety.

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But all this at the time, we're talking about, she was still independent in the flat. I was very worried about, we were all very worried about the security of it but after a bit we decided there was nothing, just nothing we could do. I didn't realise at the time that this man in the flat actually in the block of flats, actually had a key. 

The lady next door was frightened of her, the lady next door was worried about her wanderings and the fact that she left, the door open and she was also worried about her cooking on the gas stove. And so were we.

She always remembered how to use the microwave which was good, so she did use the, she, the microwave what she used up till the end. I think we disconnected the gas stove. I've got a feeling we disconnected the gas stove in the end. And, and she didn't particularly notice I don't think that it had gone. And she, and so when she did use things it was just the microwave, so it was lucky that she'd, the microwave was part of her, her sort of memory bank. 

It was, managing in the flat. Yes. She actually kept herself very clean, she always kept her clothes beautifully clean and the flat looked clean, if you, if you didn't look too closely. I don't know how it, how she hoovered but it always looked very tidy, it all looked very nice actually it was, it was always a pleasure to go in there.

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 telephone calls which alerted her to her mother's level of dementia.

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Describes telephone calls which alerted her to her mother's level of dementia.

Age at interview: 53
Sex: Female
Age at diagnosis: 61
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And phone calls, she knew my phone number, it would just go on and on, there'd be days I'd get twenty phone calls, not knowing what she was doing, where she was supposed to be, what was happening to her, it would just go on and she'd get into a loop and couldn't'

 

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.

Age at interview: 60
Sex: Female
Age at diagnosis: 80
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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.
 

 

Evidence of her deterioration eventually led to her asking for her mother to be taken into care.

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Evidence of her deterioration eventually led to her asking for her mother to be taken into care.

Age at interview: 53
Sex: Female
Age at diagnosis: 61
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But she was still managing to live alone, do things but it's difficult. I was doing frequent visits up to Scotland and she would, every now and again she would take it in her mind, she'd come to England and she'd come and see people. Then she'd take herself off on trains and be OK. 

I was going up more often to Scotland, she was coming less on her own. But we are, she was still managing to do things on her own. She went to Austria on holiday, she went to Spain on holiday and on all of those occasions I had comments from friends saying she can't really manage this any more so, I'm trying to date it now but I can't remember when the exact…  But she was still very adamant that she could do all these things on her own and I was beginning to have to warn people that they might find her difficult and that she wouldn't be the same and they might have to…but still allowing her to do all that. 

But I didn't want her to get in a mess and her friends not know what had happened to her so I was beginning to have to say 'You may find she's forgetful' or 'Let me know if there's a problem and I'll come and sort her out or whatever.'

The last six months was horrific and I can only say it was a nightmare with me having to go up to Scotland once a month and, fielding her care from here was a series of carers, the GP, their unit, until we could get her a place. When I eventually, when we eventually got her a place, well, no she came to, it wasn't really a crisis but it got to the point where the neighbours couldn't sustain it any longer. 

I begged and pleaded the consultant to take her into hospital for an assessment because I didn't think we could manage to get her into care from home. And they took her in and they sectioned her actually for an emergency section first and then a twenty-eight days while I found some appropriate care.

Last reviewed February 2020.

Last updated March 2015.

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