It Takes Two!
There are reasons why children are born with two parents. Granted, that with the current divorce rate, many children have two sets of two parents, which does not have a great deal to do with the point I would like to make. I do find it necessary to try to think like someone else reading my words, knowing that they will look for holes in my premise.
Having a spouse with Dementia is very similar to caring for a child. Children are unpredictable. One never knows what they will do or where they will run, which is why there is a market for puppy-like harnesses for overactive tots. There is no similar device for one’s adult mate.
A good friend called yesterday to share that her husband suffering from memory loss, had slipped out of their home without her knowledge. She was alone because her caregiver had that Saturday off. By the time my friend realized that no one should be in the bathroom that long… her husband had disappeared. He had unlatched the front door and gone for a walk, but where did he go? After two hours of police assistance, he was found. A serious fall on his unannounced excursion had resulted with caring citizens calling the paramedics. He was rushed to hospital, perhaps not knowing his name, definitely not his address or ID number. He certainly did not know a phone number which could have contacted his wife amidst her panic. A photograph delivered to his wife confirmed the lost soul had indeed been found. Had it been any other day of the week, there would have been two sets of watchful eyes in his home, both the aide and the wife would have been observing his movements and one of them would have prevented his exit.
Is this experience dissimilar to that of a parent with an unruly child? With a bit of luck, the child has more than one parent in the house to keep an eye on them-perhaps even extended family or siblings. In the home of a Dementia patient and their spouse, there is often only one family member. Adult children have flown the coop, and in most cases, husband and wife have successfully lived alone for many years. Perhaps an adult child is caring for their parent, but they have so many responsibilities that they can hardly watch Mom or Dad every second of their time together.
A very big difference between youngsters and older individuals with memory loss and diseases of the brain is that children can learn. If they touch the stove, they will remember that it was not pleasant to be burned, and likely will not do it again. Dementia patients cannot learn because they cannot remember. There is no change of behavior after negative experiences, and thus no relief in sight for the spouse or caregiver.
The wife or husband caring for a mate with dementia initially decides that they can go it alone. Dementia doesn’t land on your doorstep full-blown. It creeps in day by day and one makes adjustments automatically, out of necessity.
One eventually finds as time passes, that it is too much for one person on their own. The responsibilities of caregiving for a spouse in this condition, are beyond the capacity of any normal human being. We all begin the journey believing we can manage, trying to preserve our privacy and space. With time, fate deals us a hand which we cannot manage, and we bring someone else on board to assist.
It is now 5:20 AM and I have been awake from 2:30 A.M. when Hubby came into my room quiet as a mouse, opening up cupboards, looking for clothing to put on. I guided him back to bed but he was in another stratosphere. He was stressed, talking rapidly and not the least bit interested in going back to sleep. I called Violet out of her slumber to come sit with him. She generally soothes him. I tried returning to bed, but found the muffled conversation in the next room disconcerting. I felt myself tense up and remembered a newspaper article this past week about how many people currently suffer from panic attacks. That is the last thing that I need.
I decided to get out of bed and join the vigil. The miraculous new medication is not yet doing its job. Tonight, it will be increased to a full pill and I will pray for a night’s sleep. Flitting through my mind is the necessity to cancel today’s hair-cut appointments. No one in this house will be functioning properly this afternoon without additional sleep. No time for vanity today. Self-care will require more than a beauty salon. An extended cruise in the Caribbean would do the trick, however.
Hubby is upset that there are men who want to harm him at the windows. He sees a gun in the hands of one. I promise him that they have now gone away and that we are safe. I feel very badly for him. He is in his own confused world of fear and exhaustion.
I have been sitting next to him for hours now, as has Violet. She is an angel. I am looking out the same windows that Hubby fears, and I see the walls of Jerusalem’s Old City. The sky is changing colors from navy to lavender as the sun does its morning magic at dawn. The birds are chirping. There is something beautiful happening all around us – in tandem with our negative reality. Hubby is emoting his stresses with his eyes shut. It is a bizarre juxtaposition.
While I am sitting in the room with him, my eyes glance of the wall we decorated with twelve large photographs of our travels and human rights missions. I am looking closely at the handsome man (and his not too shabby wife) from thirty years ago. I am reminding myself how vital he was. How he protected me. How he loved me. How passionate he was about helping others. How he selected an eight-year-old waif to sponsor at the girl’s orphanage. How he took her and her little friends out for ice cream, lined them up on chairs along the sidewalk, and sang songs to them loudly and with love. How he gently held an Ethiopian child who was crippled so that we could give him medical aid on our mission there. How he accepted the responsibility of assigning individuals to meet secretly with Refuseniks on our mission to the former Soviet Union (under the ever-watchful eye of the KGB). How he returned a second time to help them, all over again. Fearless, strong, charismatic, this is the man I want to remember.
When I write about difficult moments on this journey, it is with the full understanding that he is not as he appears. His life is the totality of it all. Today is not who he is. If I remember it all, I can forgive the fates for everything we are experiencing. I truly want to share this concept with others who have a loved one with memory loss, cognitive decline and confusion. We know who they were when they were able to make their own life choices. They certainly did not want to take the path we must travel at this point in time. Nor are they responsible for it. Such is life for us all.
Violet went back to her room as we thought Hubby was going to sleep. Within minutes he was in distress again. I called her back to help me. It is too much for me to manage. She is young and experienced with caregiving. I am plodding through the darkness. I simply could not do this alone. Not on a physical level. Certainly not on a psychological one. Not on an emotional one. (Are psychological and emotional levels actually the same?) I am sure you comprehend the wide spectrum of my inabilities. I know from counseling others around the world that this feeling of being overwhelmed by the needs of a loved one with dementia, is universal. There is no possibility that one human being can do this on their own. Those who cannot find assistance, suffer terribly and are heroes and heroines of the highest order. They are giving up their lives for another… but they should not be expected to do this alone. It takes two.
The light has transcended from the color violet to a golden yellow. There is a reason why our city is called “Jerusalem of Gold.” It has nothing to do with precious metal, but more to do with the city’s historical richness and the glow of the waking day.
Having someone to help me from moment to moment allows me to find peace of mind when none was previously possible. I am suddenly mindful in the moment… and appreciating it all.