Try to imagine that you live with someone you have loved for decades, and that person bears no resemblance to the person you married: not physically… not mentally… not emotionally. Yet there are fragments that will always connect you. You have shared joy, pain, intimacy, growth, children (if possible), illness, health, excitement, disappointment, success and failure.
A few nights ago, we had completed a difficult day together and I was sitting with Hubby in the evening when he proclaimed “We should get a divorce! We don’t have a marriage anymore! We don’t have anything in common!” “Really?” I replied… “Do you think there are women waiting in line to care for you?” I responded tersely. To devote so many years to caring for Hubby and then hear him proclaim that we need to “move on”… Actually, made me laugh. It is quite different when the person making the declaration has cognitive impairment. Earlier in our marriage, the same words might have been distressing, but the absurdity of a 93 year old man wanting to dump his wife (who is twenty years his junior), after 48 years of marriage is hysterical! Hubby conveniently forgot the fact that I devote every waking hour to his needs and think of him constantly! Even with the mental decline which dementia brings, one essence stayed intact for my Hubby… his ego!
Years ago, a close friend who supported me through Hubby’s bouts with two different forms of Cancer, and then through his older years of cognitive decline, witnessed my daily commitment to Hubby. She asked me “Why do you do it?” She admitted that she had never had a really wonderful marriage and that her other relationships had never been completely fulfilling. I responded by asking, “If one of your children was ill, would you desert them?” “Of course not!” she responded. “Well,” I explained… “This is the same. Hubby was a wonderful husband for over forty years. One does not walk away from that kind of love just because ‘the going gets tough’ – just as you would never abandon your child.” Then she understood.
Years of love and caring can be hard to remember when your reality changes. Yet, one internalizes the commitment. Perhaps after so many years together, we really do become “at one” with our mate… and caring for them is actually the same as caring for ourselves. Abandonment, for me, was never an option.
Friends have sometimes shared a different experience with me when their parent had married for a second time, later in life. They were angered that their father suffering from mental decline has a “new wife” who still goes on vacations alone, goes to her Mahjong game weekly, has lunches with her girlfriends…and leaves her mentally reduced hubby to fend for himself. How can she be so selfish? The term “new wife”, by the way, describes any woman who is not our biological mother and could actually be someone married to Dad for 15 years or more. Time flies doesn’t it! But one must remember that this wife #2 or #3 or #4… may have cared for a previous hubby with every ounce of strength she had. It is certainly possible that she did not have the emotional or physical reserves to do it a second time, and decided to be good to herself in spite of the needs of her spouse. It is hard to witness this if it is your parent being left on their own or with a hired companion. But think again. if your Dad or Mom had not remarried… they might be living with you! That should make one pause for a rethink!!!”
The build-up of stress for the caregiver of someone with dementia is massive. There needs to be a release or real damage occurs. We want to tell our best friends about it all to blow off “steam” and they kindly listen on their end of the phone. But we become very sensitive to the sound of their voices… and we know we are boring them beyond belief. We need to vent, but they have heard it all before. Can’t blame them… at least they answer the phone when we call. We should count our blessings!
I thought at one point of going to a therapist. I did that once before about 20 years ago when too many terrible life experiences piled on top of each other, and I knew I could not handle them. I talked and talked and talked… and finally told the therapist that I was sick of my own voice and would not be continuing. I was feeling much better after having vocalized the overflowing emotions. But recently I called a few therapists and heard what they were charging per hour. You must be kidding!! I am going to pay them that much so that I can talk and talk and talk???? I don’t think so!
Thus, the cost-free idea dawned on me, to begin writing a “Stress Diary.” Each time I thought I would “burst” – I sat down at my computer and the words flowed from my head to the printed page. I felt the muscles in my body relax as I had told my diary what was really happening in our lives. When I could write no longer, I knew I could face another day.
It was later suggested to me that I write a “Thankfulness diary.” Each day I was to write down something good in my life which makes me grateful. This is a terrific positive approach for improving your wellbeing. I wrote in it for three days and ran out of energy. Being optimistic and positive is totally exhausting! The great news is that no matter what you tell your diary… It will always love you and be waiting for you to share absolutely anything that you feel, hope for, or fear. Your diary is the ultimate friend. I hope that sharing mine with you, will help you to understand that you are not alone.
I hope you have enjoyed this chapter. There are many more waiting for you. Please visit the home page of: thedementiadiary.com – to read the chapters you may have missed in The Diary! (Don’t overlook the Resources section, the subject index and some of my favorite Diamond family recipes!). Subscribe there to receive each chapter as they are released weekly.