A Different Kind of Grief , A Different Kind of Saying Good-Bye…
This weekend I took my mother on a long anticipated trip to the Oregon Coast. We used to reside their when I was a child; when we moved away, every summer vacation was planned to return there. My love of the sandy beaches, treasures to find, and the calming effect of the ocean waves came from these very special memories.
The morning we were scheduled to leave on our trip, despite the many previous conversations of our planned adventure, she did not remember. I walked into her home to find the usual chaos of pictures, magazines and newspapers strewn about and then began the repeated ritual and semi-stressful task of finding where she had newly hidden her clothing, purse, shoes and whatever else we needed to pack.
Knowing that she no longer remembered to nor wanted to take a shower or wash her hair, I came fully prepared to gather her things and take her to my home to handle those tasks. I gave her a bath, washed her clothes, washed her hair with a mixture of love and sadness. The woman everyone used to know was meticulous, demure and a bit proud but above all very gentle loving beautiful woman. As I scrubbed her back and rinsed out her hair, I was awestruck at how much she reminded me of a frail child at a mere 95 pounds, and how I felt we had certainly reversed roles. It was only right that I should be bathing her now. Yet, my heart sunk because I know it definitely affected her dignity. As I dressed her, put on her makeup and styled her hair, she lit up knowing that these simple acts made it more bearable to look at her reflection in the mirror. That brought smiles and laughter to both our faces.
I was sure she would so enjoy getting out of her home and enjoy some fresh air and reminiscing. Seeing the ocean beaches would calm her spirit and possibly bring back many great memories. I am sad to admit I think the trip actually gave her feelings of fear and anxiety more than happiness and joy. By the end of the trip, we were all quiet, exhausted and heavyhearted.
She was in strange territory, and unfamiliar surroundings have always agitated her a bit. I do not know what I was thinking. I do know spending a few nights with her would make me more familiar with how much her disease was progressing and that was important to know. She packed and unpacked her suitcase several times. She asked, “How did I get here?" and “Where am I?” more than once. After a few days, at one point, she did not even recognize my husband. When she finally did, she asked, “How long have you two been together?" “Twenty years mom,” I replied.
There are some things a mother never forgets, and that is how to read their children’s faces. Like an old familiar book, she could see I was anxious, sad and sorry to admit, even a bit short-tempered at times. I think that was the child in me rebelling against this disease. Even as adults, we still have moments of “wanting our mommy!” Adding my 3-year-old grandson (usually my cherub faced haloed angel) and my husband’s 6-month-old (energy-filled) chocolate Labrador puppy to the mix might had been a bit of overkill. My husband is a saint!
However, the point of this story is: I have ever so slowly been saying good-bye to my mother for the past six or seven years. This trip I so imagined would bring us both some peace and connectedness turned out to be something entirely different. This trip I said good-bye to my mother on an entire different level. I had been agonizing over the fact that I was remiss and prolonging getting her the care she needed on a daily basis. Care that requires removing her from here existing abode soon. It is a well-known fact that when a patient with Alzheimer’s is removed from familiar surroundings, they seem to lose themselves faster to the inevitable symptoms of the disease. I have now witnessed a small part of those facts myself this weekend.
It is a no-win situation. For those who have the means to take a parent into their home and care for him or her, I not only applaud you, I empathize with the mental, physical and emotional aspects of your suffering as well. Being a full-time caretaker is one of the most underrated, unthankful exhausting jobs in the world. For those who are not able, I empathize with the anxiety, denial, guilt, shame and sadness of your suffering; having to place a parent in someone else’s care is the hardest decision for a child to make.
I know there are worse diseases, horrible losses in numerable ways, but this is my story, my view of Alzheimer’s and my way of saying good-bye again, with more good-byes to be sure in the near future. I know I am lucky she still recognizes me, most of the time. I am thankful she can still laugh and enjoy her life, most of the time. I can also see her trapped in her own mind unable to put all the pieces together or coherently make a simple word come out right. I know she is frustrated when she does realize what is happening to her, and I see a shell of a beautiful woman who surely did nothing to deserve this sentence.
She survived four very different and independent, strong-minded children; a 30-year marriage; breast cancer; watching her husband/best friend, siblings and parents all pass before her; and 35 years of working hard to survive and make a living for herself and her family. So this is for you Mom. Your big heart and small acts of kindness have not gone unnoticed, nor did the courage and strength you held us all up with throughout your lifetime. You are loved, right here, right now, and this is something I do not want to say after you no longer know who we are. I do know, however, you would be mortified to think anyone knew anything about this part of you, so thankfully you will not remember I wrote it. I love you.
Take the moments you have with your parents. Say what’s in your heart, tell them you love them every chance you get. You never know when it will be the last time they can repeat the same or recognize who you are to them.