Mom, Dementia, and Daughters

I have not written much about my Mom as she has been physically gone for almost nineteen years. She died when she was 74. She would have been 95 years old on January 30 this year. Losing Dad is still fresh, and writing has been a catharsis for me in handling my grief. Mom, though, and her circumstances, rendered a different kind of grief. My Mom had either Alzheimer’s (which we think) or vascular dementia (something about which I recently read).

The phone rings at 4:03 in the morning. Sleep, uncertainty. Answer? Yes/No? Prank? Emergency? Respond. News. Nursing home. Hospital. Another step toward going home. Your body is held captive by the mind that slipped away a long time ago. (5 August 1997 4:45 am)

Before the Dementia

A fond memory I have of Mom is from 1987 when I was in labor with my oldest daughter. I remember resting on my bed after being sent home from the hospital a second time because the doctor did not think I was ready to be admitted. As I labored in bed, I remember her sitting on a chair next to the bed. She stroked my forehead, giving me reassurance that it would all be fine. This came to mind again because I recently watched my daughter give birth to my grandson, so naturally, I reflected on my common experience. Mom left for California not too long after my daughter’s birth. My grandmother (her mom) passed away about a month after my daughter was born.

The one person in the world who is never supposed to forget you is your Mother. Yet nature plays a cruel joke on some of us and takes her mind before her body is ready to go. She looks at you with almost total blankness with just a taste of familiarity. She asks how you’ve been (a hundred times she asks) as though she knows you, and all you say is “fine” or “good”. There is no point in saying anything else. She seems to be going backward as you go forward. The point where you crossed in knowing each other is gone now. I’m sorry I never got to say goodbye when you could have understood. (7 November 1997)

Mom – Signs of Decline

In the early 1990s my Mother’s mental capacity began to dwindle. As we look back, we can recognize that some of her actions were not just because of her usual eccentricities. It was the beginning of her dementia although it may have started sooner than we recognized. She did not do well in controlling her diabetes or her overall health. I am convinced the lack of self-care accelerated and exacerbated her mental condition.

Winter of ‘92-’93, we made the bold move to relocate Mom from her home about 2-3 hours from where my sister and I lived. By spring ‘93 we had her settled in an apartment in hopes that she would thrive better by being closer to us and having someone check on her. In many ways she was like a child. My sister made this observation in a letter updating my brother:

“Structuring medicine taking has turned into quite an ordeal. She was unable to effectively use the little pill boxes (Monday, Tuesday, etc) that they have at Walmart—she was doing something with about three days worth every day??, so the current system entails making and labelling individual sealed envelopes for each day of the week, labelled Monday, March 29, 3 w/Breakfast, 2 w/Dinner, Total 5, (and so on for every day) and stapling them on a bulletin board. It’s elaborate, but so far works fairly well.”

Mother played games with that system like hiding the bulletin board when we came by to check on her. A couple of times she told one of us that the other said it was okay to quit taking her medication.

Mom and Her Imagination

We took mother to the family doctor, dentist, eye doctor, and neurologist to get check ups. Mother had quite the imagination. Again my sister observed in the same letter:

“You will be interested to know that during our visit to the eye doctor when the technician was taking down some history, I became aware for the first time that she suffered eye injuries during the bombings on the west coast during the war. And to think I didn’t even know about the west coast bombings.”

(Okay, I laughed out loud when I recently found the letter and re-read this part!)

Mother could always tell a tall tale – like lying about her age. Her birth certificate indicates she was born in 1924. The army dependent forms completed when she married my Dad show her birth year as 1930. Who knew?!

Doing the Best We Could

We came to the conclusion at this point, however, that she really couldn’t control some of her current behavior. We worked to help her control the diabetes while also hoping to allow her the graciousness of still having some independence. We tried to maintain a sense of optimism that she would manage her diabetes, and with some human interaction and exercise, hoped she would get better. Eventually, we did have to take away her car because she took a drive somewhere and pulled over, not knowing where she was or how to get home. For her own safety as well as for the safety of others, we couldn’t let that continue.

My sister or I would take her to the grocery store to get her out as well as to try and foster some sense of independence. She would still try the “I need this bag of candy in case my sugar takes a dive,” but with her continued elevated blood sugar, we knew that she was just trying to get the candy home so she could indulge. We would promptly remove them from the cart or bag.

We all did the best we could with what we knew to do and could do at the time. Trying our best to help my mother who exhibited strange and abnormal behavior even for her already inherent oddities.

Mom, What do we do?

Sometime after my daughter’s birth, Mom had to have surgery. Complications from the surgery and her health created a longer recovery time, so she transitioned to a rehabilitation facility to recover. Her mental capacity and memory had declined even further, forcing us to make the toughest decision. The transition to the nursing home was the next step. It was the hardest, most heart-rending action, but she needed 24 hour supervision and care. We would visit her, take her on outings, bring her to one of our homes, and tried to ease the guilt of leaving her there.

I hope that she was able to go to a good place in her mind and not be scared or tormented by her loss of memory. How does an individual know that the loss of memory is happening? I hope that she didn’t wake up scared, not knowing where she was or who she was but that she had some happy memories to which she could retreat when she didn’t know what was happening to her. I hope that she did not suffer, but if she did, I hope she did not know she was suffering. I hope that we brought some pleasure to her and did not cause her stress by our visits and outings.

Mom – Christmas 1997

One occasion in 1997 at my sister’s home, Mother was sitting with her back to the door as my daughters and I came in to the house.  Her white haired head sticking up above the back of the chair. My oldest daughter, in her sweet innocence and honesty says, “Looks like Albert Einstein sitting there.”  And, she was right. She was so fresh and real. Helping her mom and aunt find humor in a humorless situation.

That was our last Christmas with the remnants of our Mother that remained. Deep down, I think we knew that it would be. We made our peace with that and tried to prepare for what was to come.

Continued/concluded in the next post – January 24, 2019