Falling Through The Cracks Of Life
Invited to a birthday party for my 93-year-old amazing friend, I knew I must attend. Her New Year’s Eve parties of yesteryear were legend: the who’s who of Jerusalem’s most interesting people; benefactors, politicians, world class archeologists, artists, intellectuals, gathered to celebrate and laude their hostess. Her hard work and wealth had culminated in her life’s accomplishment, a museum to share her husband’s massive antiquity collection, and to educate the public about life in these lands in ancient times.
As the sun descended into the horizon, the temperature on her massive balcony became pleasant. A slight breeze foretold a lovely evening for the party. Arriving fifteen minutes late, I was surprised to see her sitting on her terrace with one couple. Where were the guests? The drinks were set out beautifully, the horseshoe arrangement of tables suggested that many guests were expected. Where were they? Yes, of course, I remember, her parties were always open houses, and people arrived and departed throughout the evening. Perhaps that was the explanation?
Sitting next to my friend, I recognized her signs of aging. Looking into the middle distance, a bit confused, unable to begin a conversation, but able to comment on those of others. As the evening progressed, a few dignitaries came to pay their respects, but rushed off to seemingly more important events (or perhaps they went home to watch Netflix?). Some who had worked with her for years arrived, and stayed for dinner. A few. One couple came from an hour away. Where were all her good friends that I used to see at meetings and events? Mysteriously they had seemingly disappeared from her life.
Feeling somehow like a person displaced, I scanned the room to see with whom I might connect. I took note of another woman younger than myself, quite verbal, who was beginning to tell those at the table about her 42-year-old son who has had epilepsy from his youth. I recognized in her, a need to share her life, her massive stress, and to be heard by someone who might actually care. I moved a few seats closer to her. I was interested in her need to talk about her experiences. Her heightened energy drew me towards her. Out of respect for her privacy, I must find a name for her. Yes, I will call her “Dawn.”
Dawn shared how difficult it is to have her adult son living with her. His life-long epilepsy required a surgery intended to help his condition. It not only was a failure in regards to his epilepsy, but a significant portion of his brain had been removed and his mental decline has constantly been compounded with serious falls causing more and more damage to the brain. Dawn valiantly lives in her own kind of hell. I handed her my calling card with thedementiadiary.com information on it, and my personal phone number. She shared with me that her mother had lived with her for seven years with dementia, and that what her son is experiencing is ten-fold worse than what her mother’s condition had wrought.
Caregiving for others who are completely dependent on us is not only exhausting, but lonely. Her husband had given up on his responsibilities with the son, unwilling to even speak to him when in the same room. Dawn began describing some of her peculiar fears. She shared that she is terrified of hot weather. I asked her what exactly frightened her and she said she did not know, just that she became afraid when she knew that the temperature would be very high that day. At the moment, Jerusalem is having a sweltering heat wave. She is not doing well.
As she continued to share experiences of caring for her son, I also shared different chapters that I had written about caring for my husband during his decline. In spite of her belief that her challenges were unique, I had a chapter written for almost every problem she was facing. She admitted that her fear of hot weather is a form of panic attacks. I shared my own experiences with suppressed stress which landed me in emergency rooms in terror for my own survival. She acknowledged that the stresses she continues to experience are shortening her life, and that she fears what will happen to her son if he outlives her. She can no longer deal with his needs on her own, and there are no institutions prepared to accept him (although some have tried and failed). He remains at home, always at home. Again, I shared some of the chapters I have written about these stresses, including one which is titled “Shall we medicate me… or thee?”
Dawn is reticent to try anti-anxiety medications, but they most certainly can improve the quality of her life now and could probably extend her life substantially. Every day we suffer under the stresses of caregiving, we sacrifice our own health, and shorten our own lives in the process. I really hope that after our time together, she may give it a try. I suggested that she could try medication under her doctor’s care for a few months, and that she need not stay on it if she is not pleased by the improvement in her own life. She nodded in agreement.
If one takes the time to think of those whom we know who are caring for loved ones, their caregiving experiences have many similarities. Parents of children with Down syndrome, those mentally challenged, those caring for loved ones with cancer, parents of children who are wheel-chair bound for many reasons, those who parent children with neuro-degenerative diseases, all have so much in common with those who care for a loved one with dementia.
There are organizations to assist many persons suffering from varying conditions. But not for all. There is no organization prepared to take responsibility for Dawn’s adult son quite simply because his condition is too complex and requires 24-hour attention. She would love him to be in a group home, but it appears that has not been successful. His inappropriate behavior, without any intent to harm, cannot be tolerated in a group situation, even once landing him in jail. He had no idea what he had done that was objectionable, or what was happening to him through the legal processes which followed. He was dismissed from the group home as “unmanageable.”
Families caring for a loved one with early-onset dementia, often as young as 50 years old, can also find themselves with no support from government authorities. Dementia is generally associated with aging, and society has not yet faced that cognitive decline can come very early from unexpected conditions. Dawn’s son had epilepsy as a young child. His epilepsy, his surgery, his continued falls and seizures, have all left him cognitively impaired. There is no category which embraces his complex condition at the age of 42. Dawn is appealing totally insensitive rulings from the US Social Security Agency, which recognizes other diseases and conditions and financially assists families dealing with these, but refuses to help Dawn in her overwhelming situation. Years of asking for support and being denied, are finally on appeal, is no one listening?
The one moment which touched me the most when Dawn was sharing her complicated web of emotions, was when she told me that others are really not interested in what she faces each day. It is too difficult for others to comprehend. Most people simply want their lives to be pleasant, even “fun.” That leaves caregivers like Dawn, quite alone. This reminds me of a discussion of omission and denial. Not opening our hearts to those who need our support may momentarily protect us from discomfort, but life plays tricks on us all. One day we may need others to be supportive of our own situation when we fall between the cracks. Will we have lived a life of caring for others that will merit us the friendship and support we require when our own rose garden has new thorns?
Dawn now has a place in my heart. I hope you will connect with those who need you in the days and years to come. Doing so, has unexpected rewards.
