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Loneliness, Dementia and Living the Life We Want

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I’ve been thinking about my lovely dad, about him sitting there at home with his little dog, and worrying that he might be lonely. Perhaps it’s because I’ve been experiencing a low period myself – in fact, a period of quite severe depression – but I know he loves company, and that without his Westie he’d be quite lost.

It’s hard not to project our own feelings and concerns onto the lives of others. When you’re caring for someone, and trying to support them, it’s hard to leave behind your own thoughts and to really listen to what they’re wishing for themselves. For my dad, that’s clearly to live independently at home for as long as he is able. ‘I don’t want to move’ is a mantra for him if you talk to him about future options – about exploring the possibilities that would be available should he no longer be able to live safely at home.

Now days, dad simply moves through each day trusting that what has always happened will continue to happen. That, on the day of his Probus Club, someone will turn up to give him a lift. That, when his 41 Club have a posh Christmas dinner, someone will sort out the payment and the menu choices and a means for him to get there. He no longer does these things for himself, but he does not remember this. We make wonderful diary secretaries, me and my sisters!

There are many things that dad no longer does. He will open letters but he no longer replies to them. He forgets they’ve arrived, and when I visit I may or may not find them and have to troubleshoot the consequences of his lack of response. Thus he misses medical appointments or bills go unpaid. Much of his mail now comes to me, or my sisters have to deal with things by email (they both live abroad). He no longer remembers if he’s fed the dog, though fortunately she makes her needs known if she’s hungry. He no longer changes his clothes for fresh ones or eats vegetables or puts the bin out or makes me a cup of tea when he does one for himself.

We worry about dad. We know that he gets disorientated and that sometimes he leaves the door open when he goes out, but we also know that he is happy living where he is with his familiar things around him. He is totally reliant on the care package we have set up – on the carers who come and go, who take him shopping, and do his washing, who help prepare and heat his meals. Over time some of them have become his secondary social life – the people he relies on because they are familiar faces and part of his routine. They alleviate the loneliness he feels.

In many ways dad is on borrowed time living at home. His poor eyesight increases the chance of accidents and falls, and his dementia puts him at risk of fraud and means he can no longer perform everyday tasks or remember people’s names. He is like a child – happy unless you try to change his routine or tell him what he should do. But, as those with experience of dementia know, caring is also about allowing and managing a certain level of risk in order to maximize a loved one’s freedom and independence. If dad takes the dog for a walk he risks not being fully aware of the traffic or finding his way home easily, but he has his faithful companion and it helps his mobility and circulation, too.

I know dad sometimes gets lonely, because he’s told me. But he’s living the life he wants to lead and I have to step back from my own feelings and let him get on with it. If it were me, I’d no doubt feel the same – and I’d no doubt be just as single-minded in trying to maintain the lifestyle I loved.

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Anne de Gruchy

It is a strange thing, the ups and downs of a long-distance carer’s life. When your visits or phone calls are frequent, or the paperwork overwhelming, you’d give anything for a break.

Alessandro Bosco

I have just started my second year of the PhD in dementia care, and as attendee of the Public and Patient Involvement (PPI) meetings at the IMH, I have frequently met with people with dementia and their family carers and talked with them about their caring experience.


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