The Pain Goes On

I spent time last week with some people whose lives have felt the full impact of dementia. My conversation with one lady in particular stays with me. She lost her husband to dementia two years ago. It was, she said, a relief in some ways. He had spent his last months in a care home and she had visited him every other day, experiencing, at first, guilt and then that awful sense that the man with whom she had spent so much of her adult life no longer recognised her.

Two years on, there appears to be a new pain in her life. Once very outgoing and busy, she now struggles for any kind of motivation. She can’t seem to interest herself in pastimes which were once so much a part of her daily life. Her family is worried about her, she says, and she wishes she could “snap out of it.” We looked at each other. No words were needed.

Dementia’s icy grasp doesn’t necessarily loosen when a loved one dies. Watching a loved one slip out of reach while still alive is painful beyond words. What is crueller still is the pain which, for many, continues beyond death.


About duncancajones

I am a coach and mentor, a charity trustee and a journalist. Thanks for taking the time to visit my blog.
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1 Response to The Pain Goes On

  1. Sue says:

    Dear Duncan
    I have recently read your heart-rending latest blog. Worryingly as an unpaid carer living with two octogenarian parents I can wholeheartedly empathise with this lady in her feelings of total demotivation through her experience of losing a loved one to dementia even though I am not caring for 2 people with the disease. My situation, although somewhat different, also has had an adverse impact on my morale, as I find myself grieving for my fulfilling career, worrying about my livelihood and missing having the attendant quality of life I once enjoyed.

    I have been here now living like this for over a year and feel a bit like Robinson Crusoe counting the days, living in a beautiful but remote place but no longer with that wonderful sense of purpose that a fulfilling career gives nor, it has to be said, the income. Such is the feeling of isolation being a full time carer engenders and of invisibility as a person in your own right you feel you cease to be almost. The experience, particularly of others who actively applied pressure only (as far as I’m aware) to the female sibling (as gender equality does not tend to exist within families) to do so, often displaying little or no sensitivity to the situation has proved particularly galling. The way those who have pressurised, then disappear into the ether, or when turning up are either not particularly helpful or sensitive, once from their perspective someone else is happily in place, is perhaps one of the most depressing aspects. In turn of course, sadly it tends to actively invite melancholia to come knocking at the door.

    In my case not both my parents have dementia. The point is that neither of them is well, which day-to-day, week-to-week behaviourally makes the situation difficult. The experience of being here, doing this partly out of a sense of duty, partly tellingly having felt pressurised into leaving what I enjoyed, then left feeling unsupported and alone is, and there is no getting away from this, totally demoralising and does wear away one’s health as well as morale.

    Significantly it also changes you. Does it also give one greater wisdom and insights? It is possible perhaps once the grieving disappears for whatever it is someone feels they have lost – a person, personal freedom and quality of life and a livelihood. It certainly changes outlooks, feelings towards others. It makes me appreciate my friends so much more as throughout they have been the ones, who have consistently had my best interests at heart. Also new lovely empathetic friends who kindly take the time to listen and be there. Obviously sadly it does change one’s outlook towards those who are less positively either absent, unhelpful or insensitive. It causes you to reappraise.

    None of these things are necessarily easy to describe. However, it is also cathartic to acknowledge them I think, probably because these feelings are complex and those that deal with a sense of personal injustice end up usually bottled up and then dangerous, as my lovely friend Becca observed last night. They fester and grow in an unhelpful way with an adverse effect on our mental and physical health. No one actually wants to voice such discontent with others but when it is not acknowledged that is where the problem often lies. Therefore I can completely understand and empathise with the poor lady you describe who “once outgoing and busy struggles for any motivation”. We don’t know much about her. Questions abound. Did she have any help while caring for her husband? Did sensitive family members step up to ensure she had regular breaks away which were sufficiently long and relaxing to give her respite? If not then I can quite understand why she is morose and struggling. How isolated is she? Does she have close friends nearby who can help if family are absent for whatever reason? Would moving house help her?

    What can be done to assist? Counselling is expensive. It is not for everyone either. Some people find solace in religion and regular communal worship. Again it is not necessarily for all. Whatever, it seems to me that community is key. Does she live somewhere where there is a strong sense of a supportive community or does she live somewhere geographically remote? Can she drive? Can she join some self-help groups or something creative? Some museums and galleries are running dementia friendly sessions for the public. Does she live near to one which does so? Would she feel sufficiently confident to go maybe alone?

    The more positive me, if I had the time and energy, would want to set up a support group for people in similar situations. Setting up a blog would be a useful outlet – cathartic certainly but how can it be done so it does not upset family members? Talking and sharing burdens does help certainly – that feeling of not being alone is all important. The elderly and ailing day-in- day- out are very demanding of time and energy and are a full time job in themselves. When trying to work it is hard to find the hours in the day to either attend a self- help group or set it up. Does anyone have any ideas for alternative ways forward ? I would love to hear some alternatives…

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