Sharing our own reality

Our memories are often not reality, but rather what we have heard, or what we want to remember, and for those of us losing our memories, then our reality can change dramatically. For someone without dementia trying to understand our new reality, especially when it can change at any moment in time, must be one hell of a complicated ride! In a blog Dementia: ‘Take Your Time’ written by an online friend of mine in the UK Paul Collins (whom I hope to meet later this year), and who is also a fellow Willie Nelson fan and a care partner for his wife Maureen, part of one sentence he wrote in that blog really stood out.

...give me a couple of hours to myself where I can mix with other people who might share something of my reality.”

Often, I read articles or books or hear from experts advising care partners or staff to simply go along with the reality of the person with dementia. That is of course, easier said than done, and for a full time family member or friend who is a care partner, not to have time in your own reality must be very difficult. For staff, it should be easy, as they are only with the person with dementia for a short time, and in the home care setting, sometimes for as little as one hour, or at worst, an eight hour shift if working in a residential care facility . Spending time in the reality of the person with dementia should be really easy, when you can leave at the end of their shift.

But what of the care partner who is living at home and supporting someone they love with dementia? The impact on them when they are the only person there almost all of the time, with no-one to share his or her reality. Yes, it is true, we become isolated, and many family and friends simply stop visiting… that is an anecdotal AND evidence based fact!

Maybe even more than the physical and emotional break they need, the very real human need to spend time with people in your own reality is important, and as I read comments and blogs written by care partners, it seems to be desperately so for some. The notion that a care partner ‘care or support’ someone all of the time, is unrealistic, for them, and for us. Only yesterday, I was discussing the very real need for care partners and people with dementia or someone needing full time support, to spend time apart.

This is true in relationships before dementia, and I suspect does not stop being the case after. I know from my own perspective, even though being home alone when my husband is at work can be lonely, and occasionally, nerve racking, it is also necessary for us both. I’m not looking forward to the time when I’ll become desperate if he tries to leave me on my own, or even worse than that, if I have no idea who he is…

 

 

13 thoughts on “Sharing our own reality

  1. Hi Kate,
    I often get asked to address the needs of carers who have partners with dementia. One thing that needs identification is the fact that at some point this person will see themselves no longer as wife, husband or partner, but as only a carer. This concern needs to be addressed as we need to care for carers and have them recognise the need to get carers in to support, so that they can remain life partners and have their value in the care pathway. It does get hard to love and live with dementia when your time and focus in constantly in care mode.

  2. ‘Yes, it is true, we become isolated, and many family and friends simply stop visiting… that is an anecdotal AND evidence based fact!’ The isolation is evident here Kate and the reality is that it is Maureen’s birthday on Wednesday and as far as I know none of her family will be here on the day!

  3. “The impact on them when they are the only person there almost all of the time, with no-one to share his or her reality.”

    Yes, and that’s why so many turn to Facebook groups and share their challenges and despair – not “martyrs,” just desperate and exhausted people trying to do the best they can looking for someone else who might understand.

    • Agree, but sometimes people in caring roles do behave like martyrs, and people with dementia also do take on the victim roles… it is exactly what I believe Prescribed Disengagement® actually encourages us to do! xxx

      • Everybody behaves in ways others don’t like sometimes. But I feel that in general you judge people in caring roles harshly Kate (at least that’s the impression I get from what you write, with the exception of your BUB, and those you know) and I object to the way you use the label martyr. I think it’s an unfair and demeaning.

      • Fair point… maybe some of the time the context of what I actually mean is not explained well enough? Apologies if you’ve felt hurt and/or offended as I definitely have never thought of you like that, but rather as a fellow warrior xx

  4. They need to offer really creative and challenging places where people with Dementia can go and learn and expand themselves joyfully giving the caregivers time to go out and join the world and get some relief. Not a daycare where people paint pottery or stick cloves in oranges, but a place that has depth and can offer truly worthwhile things that the Dementia patient can prosper from. It must be frustrating for Dementia suffers to always have people treat them like kindergartners assuming they can’t grasp anything of depth. WRONG! keep them challenged so their muscle mind continues to expand, not shrivel up! Make these centers places the Dementia patient enjoys and wants to be at all the while the caregivers can get much needed time off and can feel safe in knowing their loved ones are having fun. I think the centers should have different sections too for the various degrees of Dementia so someone still pretty sharp is not stuck in a room with people totally out of it. Not fair! Hopefully people will study this disease in more depth and help people adapt to their situation and not just ignore them.,.Hope all is well Kate! Hugs to you….VK ❤

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