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…