From my perspective, it seems the two things care partners either forget, don’t realise, or forget to acknowledge, is that we (people with dementia) have feelings, and we, not them, are diagnosed with a progressive, chronic and terminal illness.
We are facing our own mortality.
Dementia is a progressive debilitating illness with little treatment, and no sign of a cure in sight. Robin Williams was living with a form of dementia that his family believes was a “key factor” leading to his suicide earlier this year, according to a report… it is obvious he felt a burden to his family long before he really needed any level of high care. I often feel like more of a burden because of what care partners and others say or imply about people with dementia.
It often sounds like we should be the only ones who are grateful and they are the only ones with any difficulties or challenges.
Very often, a care partners comments, especially about being a ‘burden’, or how we don’t ‘understand’ what it is like for them, simply deepens my/our guilt, and the sense of being a burden to my husband and children, and the feelings of shame and humiliation. Their words (on blogs, in conversations, and in the media or in research) often deepen my very deep feelings of grief and seem to indicate they have little or no comprehension of understanding of how it is for those of us diagnosed with dementia.
Of course, unless people with dementia speak out, how can anyone else know; they are in fact, care partners and not people living with dementia.
I have no doubt, they do not mean to offend or distress people with dementia, in fact quite the opposite, but if we don’t tell them how much something has offended or distressed, how will they, or other others know for the future. Mostly, I truly hope speaking out helps the understanding of those of you who are lucky enough not to have dementia, which is, as you know, a progressive, chronic, debilitating, terminal illness.
For those of you who are new to my blog, I have been a legal guardian and Power of Attorney for four family members with dementia, all now deceased, and my mother in law with ovarian cancer, and the fifth person with severe mental illness over 30 years ago, also deceased. And so it is with a significant amount of the lived experience of being a family care partner, I fully understand the emotional and physical load of being a care partner.
However, people without dementia do not have the lived experience of dementia (LUCKY THEM)… only the people diagnosed with dementia are the ones actually living with it.
Our care partners are living with us, and of course are impacted by the experience and progression of our symptoms, there is not doubt in that. We are too. You get to live on, we do not. When I speak out about my lived experience in no way do I ever mean to demean, devalue or underestimate the commitment, or the load and burden of being a carer. If being a care partner turns you into a martyr, or one who begrudges people with dementia having a voice, and our willingness to share our often very painful lived experience, then we will not progress as a group in a healthy way.
Of course we respect and love deeply our family care partners or support people, and everyone who takes on the role of a care partner. But we do feel the guilt and shame of being a ‘burden’ to them.
A friend of mine, Mick very eloquently wrote, “Carers are the silent angels who daily perform tasks most people would not do even with payment.” I agree with him, and believe that. In my experience of living with dementia, I feel deep appreciation for the role of carers, the love, compassion, commitment, and friendship. Although sometimes the love does not sound or seem quite so unconditional.
After being told recently; ‘If there were no care partners, there would be no options of living at home for thousands of people’ I suspect I would prefer to go into residential care. As if we aren’t acutely aware that we could not function as well without them, but to be made to feel like such a burden, and that we need to feel so grateful???! Thank goodness my husband is not like this.
Care partners may feel forced to give up their lives – we are forced to give up our life as we know it with no choice. At least as a carer, there is some choice.
Some care partners may not realise this, but most people with dementia feel deep trauma from being diagnosed with this progressive terminal illness that is dementia.
Many of us already feel dreadful guilt for always needing to ask for help.
I still feel a deep sense of shame and humiliation, and embarrassment when the symptoms become apparent to others, sometimes even to myself.
No, I have not got used to living with dementia and have never found it easy, indeed, nothing even remotely like a birthday party.
The guilt I feel does not go away, no matter how rational I try to be, and the outpouring by care partners of how much a ‘burden’ we are, in particular the reminder we could not exist at home without them, to me is deeply hurtful. It exacerbates my shame, guilt and grief, and makes me want to crawl into a hole and give up advocating. No wonder so many people with dementia decide to give up…
Of course care partners matter; of course we cannot manage without them.
In the same way, people with dementia have opinions and rights, and, and at long last, have a global voice of more than one or two.
Some care partners may not like what we say, but that is not the point.