“One thing you must learn, and learn fast is that you have to look after yourself first.” The counsellor held my hand and was looking in my eyes as she said this with deep sincerity.
Teary eyed I looked back. “I know what you mean. I know if I am not able to look after Bert….” I did not want to finish. In a moment of insight I said: “You know, with this disease, one has the disease but it is the other that gets sick. The problem is that it is the carer who gets sick while the one with dementia becomes more dependent. They suffer less than the caregiver.”
That is one of the anomalies of Alzheimer’s. These were early days and I wondered how it could be that someone who was slowly losing their faculties could suffer less than the one caring for them. That cannot be. It must be so terrible to be losing your memory, the thing that is so vital to our being. The one thing that gives us continuity that links us to our past, our family, our friends, our community, shared experiences, our roots and is a crucial component in our evolution. At that time I had not yet discovered Alzheimer’s world nor realized that I had to live in two worlds. At that time I did not realize how much communication, everyday talk was important to my relationship with my Bert. We had always been a very connected couple, or as my Bert often said: “Where you see me, you see Paula.” At that time I did not know that I would ever feel claustrophobic, imprisoned and caged by my Bert’s love and the deep shadowing which is a hallmark of the disease.
Yes, he has the disease but I am the one that is sick. I am sick of being responsible for everything. I am sick of seeing my vibrant, voluble, caring Bert struggling for a word and sleeping too much. I am sick of my social butterfly Bert sitting through dinner in a restaurant without saying a single word. I am sick of caring for my Bert, my husband, as I would a child.
Caregiver care is not for the basics only; it is care with love, with respect; it is care that must preserve the dignity of our loved one. It is knowledge based care of one human being that is also the one with whom you have shared a lifetime.
Caregiver care is living for two so dementia puts an extraordinary onus on us, turning our existence into a two for one special. The conundrum is that it is special. This awful disease elevates ‘sharing’ to a new level. It forces you to share the physical, the mental, and the emotional in every possible way that can be imagined. Still it is not a true sharing. It is the caregiver who does the sharing for two and so falls prey to illness while caring for another who is slowly dying. Depression, a compromised immune system, increased susceptibility to common ailments as colds, headaches, and my personal bête noir, lack of sleep which has its own subset of ailments, are just a few caregiver ailments.
What can you do? That is the million dollar question. Having a caring counsellor, seeking out all areas of support, having a Lifeline group, a good diet, getting some exercise, Yoga, Tai Chi, scheduling an activity you love on a daily or weekly basis, Mindfulness and meditation are all good IF YOU HAVE THE TIME!
The Meander: I have taken my first prescribed sleeping pill. I would rather not. My Mah-jong time is sacrosanct, I eat well but do not get enough exercise. I do not know how I would survive without my Lifeliners. Every now and then my counsellor’s words reverberate but the ‘first’ is bothersome. My Bert is the priority. If I am lucky, some days I actually come second.