"Do as I say, and not as I do." That's the subtext of these suggestions to other caregivers.
Yes, when I write about how a caregiver should take care of him or herself, I am talking to myself as well as to others. When it comes to looking after yourself, as well as the patient, and scheduling the needed breaks away from caregiving, I plead mea culpa. Like so many others, I postponed my own doctor's appointments telling myself I didn't have the time, and turning down invitations from friends, believing that, not only was I "The One," but I was "The Only One."
So, yes, I know how hard it is. For two years, I did not leave my husband. That was partly because I did not want to miss any of the moments of clarity that were left to us, and partly because I felt responsible, and fearful that something would happen to him when I wasn't present. Kindly, but firm words from two doctor friends helped me decide to take the occasional afternoon for myself.
And I will never forget the first time I did. It was early in his staging. I wasn't comfortable about leaving him alone in the house, but he was offended that I had arranged for someone to stay with him. When I told him that this was for me, that I would not be able to go unless I knew that someone was on hand in case he fell, he acquiesced. That he was humouring his over-protective wife made it acceptable to his pride.
I am not likely to forget the betrayed look in his eyes -- and those of our dog! -- when I finally left. And I swear that when I returned they were both standing in the same place by the door, waiting for me, with the same baleful look on their faces. Over the years, my husband has become more forgiving about my leaving from time to time. The dog, however, still gives me that how-could-you-do-this-to-me guilt trip.
My husband did not like the first "sitter" because she insisted on chatting him up and trying to get him to play board games. Next time around, I did a better job of informing the stand-in caregiver about the established routine -- lunch, a nap, and then tea and a movie, preferably Foyle's War. That series speaks to his generation, and he can watch it countless times. (I think I could repeat the scripts backwards.)
I waited too long to take the occasional afternoon off, and far too long -- four years -- to seek or accept regular help, and did that only then because his physical condition had worsened and I could not manage by myself. As a result, I was exhausted, breaking the first and most important rule for the caregiver -- stay healthy, physically and emotionally. I urge you to seek out the resources available -- family, friends, the Visiting Nurse Association or their local equivalent. If you need help to find out what is available, do get in touch with your local branch of the Alzheimer's Association.
I was not The Only One who could take care of my patient: Neither are you. That break doesn't have to be a social occasion. A good walk can help regain perspective. Swimming also does that for me. Exercise can be an excellent anti-depressant.
Our dog, a little King Charles Cavalier called Brewster is our private therapy dog. He provides comfort and cheer to both of us. Yes, I know a dog is extra work. But oh my, it is worth it. On those days when my husband hardly says a word, he will still ask, "Where is Brewster?" Or, if he can't remember the name, "Where is our doggie?" and my daily outings with this little guy, despite the stoop and scoop business, get me out of the house, mixing with other dog owners, and remind me that there is a vibrant world available just outside the door. In the evening -- the loneliest part of my day -- Brewster sits with me, his head against my heart, and we watch television together.
And music -- played at home, listened to in a church or synagogue, in a concert hall -- music offers very real nourishment for my spirit. During the summer, I attended a Mostly Mozart concert with my daughter. As she lives 11 hours away, just being with her was magical. But to be with her in an auditorium with hundreds of others, gathered together for the sole purpose of listening to beautiful music -- I found myself thinking there is hope for the world after all.
And I discovered anew the truth in Congreve's words -- the knots in my neck and shoulders were like the knots in the oak that he describes in this quotation:
"Musick has charms to sooth a savage breast
To soften rocks or bend a knotted oak."
However difficult it may seem, dear fellow caregiver, I do hope that you will take steps to soften the rocks in your path, and bend the knots of frustration and sorrow. Listen to the music of life. It not only plays on, it awaits.