My 92-year-old mother is in the final stages of Alzheimer's disease. Last week, when my sister and I brought Mummy, as we call her, home to live in my house, she was still able to walk with the aid of a walker, say a few words, eat and experience some basic interactions.
We both sensed Mummy was happy to be at my home and she looked relaxed for the first time in a long time.
We'd moved Mummy into my master bedroom so she would have a private bathroom. That afternoon, Mummy sat in her new chair, wrapped in a fluffy afghan and holding her baby doll as my sister and I hung pictures and rearranged the room.
I'm not sure what Mummy understood, but she seemed content and that is all that mattered.
In the early evening, the three of us had cocktails -- a cold beer for my sister, a scotch and water for me and an orange drink for Mummy. We toasted and together we ate dinner at my dining room table.
That first day home was the high point.
My sister departed the next day and Mummy and I were alone for the weekend -- until hospice and the caregivers started on Monday.
On Saturday, it was as though a switch had been turned off. Mummy was no longer interested in food and mainly kept her eyes shut as she sat in her chair. Within a day, I couldn't get her out of bed to use the bathroom. She was coughing heavily during the night and seemed agitated. She was obviously in pain when I had to move her in bed.
I would say she felt miserable. I know I felt miserable.
Early Sunday morning, around 4 am, I awoke to coughing, but this time it was a different type of cough. Transfixed, I watched her labored breathing, her chest heaving up-and-down, up-and-down in a horrible, rattling rhythm.
I felt she might die at any minute. I willed her to die. She didn't.
When the sun came up, Mummy had rallied and would live another day, and then another and another. Today, she smiled a little and perhaps she knew I was her daughter.
Yet, there is no denying the end is near. I see it and I feel it.
With the help of a caregiver this morning, we cleaned mom up as best we could. When we must move her in bed, I give her a small dose of morphine and wait 10 or 15 minutes for it to take effect.
The word 'morphine' is sobering.
Mummy is not eating and is probably losing the ability to swallow. She has her eyes shut most of the time. One moment I believe she is stable and then in the next moment I feel her hovering between this life and whatever is beyond.
What is beyond?
Being close to death is forcing me to examine what I believe, as well as what I do not believe. I sit by Mummy's bedside. Watching, waiting, thinking.
So much has happened since my last update about my mother. If you are a frequent reader of my blog, you know my mom, whom we affectionately call Mummy, has Alzheimer's disease.
You may also remember that late last summer my sister and I moved Mummy to an assisted living facility in our small hometown in central Minnesota. We quickly grew to love the staff, the residents and the homey atmosphere. For the 15 months she lived there, it truly became Mummy's home and our home, too, since my sister and I spent so much time with her.
However, life changes and Mummy has progressed much deeper into the disease. While the assisted living staff gave her plenty of love, Mummy needed more personal care than they could provide.
After much discussion, we decided the time was right to move Mummy into a facility near me in the Twin Cities area. Together, my sister and I looked at a number of places and decided on one that centered on memory care and had great staff to resident ratios.
With mixed feelings, we gave our notice at the assisted living home and started packing.
I'll never, ever forget the dreary, cold morning we left our small town for the Twin Cities. Mary Jo, the director, and Sheril, the nurse, were out with us in the parking lot helping to bundle Mummy into the front seat. We were all crying. Suddenly, I had a huge sinking feeling that we were leaving a really great place for a total unknown. I was already seriously questioning myself. Had I made the right decision?
Sadly, I had not made the right decision. The move was a disaster from the start.
After only 35 days, we moved Mummy again, but this time it wasn't into another "facility." This time, she moved into a real home -- my home. No one is more surprised about this turn of events than me. This was not something I had planned.
My hope is that with the help of part-time caregivers, I can provide care for my mom through the end of her life.
Naturally, I'll be blogging about my new situation. In the meantime, please keep your fingers crossed for me, and I wholeheartedly welcome your suggestions, especially if you cared for, or are currently caring for, a loved one at home.
The media is saturated with coverage of Alzheimer’s disease. Yet, even with 10 million news stories that show up in a simple Google search, there is still an incredible amount of confusion surrounding the disease.
Here’s my opinion.
Many people are afraid of Alzheimer’s disease and consequently avoid news coverage on the topic.
Alzheimer’s is a highly complicated subject, causing some to tune out or become confused by what they read or hear in the media. Sadly, there are also those who think this disease has nothing to do with them.
Finally, there will always be people who believe and spread urban legends.
Some of these urban legends drive me crazy and I often hear them repeated by smart, informed individuals. Here are a few that especially tick me off.
Myth #1: All old people will develop Alzheimer’s.
Reality: Not True. Currently, about half of the people over the age of 85 have Alzheimer’s, but many seniors live into their 90s and beyond and never develop the disease. Also, some people in their 30s, 40s and early 60s develop early onset Alzheimer’s — long before they can be considered elderly.
Myth #2: No one in my family has ever had Alzheimer’s, so I won’t get it.
Reality: Not so fast. Even after billions of dollars of research, so much is still unknown about Alzheimer’s disease. It is difficult to believe, but researchers can’t even agree what causes it. I told this to someone recently and she didn’t believe me. It’s true and it should make everyone mad as hell. So, bottom line is this: just because none of your close relatives have had Alzheimer’s, doesn’t mean you are immune.
Myth #3: I keep misplacing my keys. I’m convinced I have Alzheimer’s.
Reality: Do you have other significant symptoms? If yes, then see a qualified physician who can perform a comprehensive medical exam, including a memory test. No other symptoms? Then, please get over yourself. Everyone loses their keys. For god’s sake, buy a key finder.
Myth #4: They just discovered a cure for Alzheimer’s.
Reality: What planet do you live on and where do you get your news? Not true. There is no cure.
Myth #5: At least you can’t die from Alzheimer’s disease.
Reality: Wrong! Alzheimer’s is a progressive disease that will eventually cause death. There is no cure and no effective treatment. Above all, this myth drives me totally crazy.
Myth #6: I won’t ever get Alzheimer’s because I exercise, eat right, limit stress, drink red wine, use coconut oil and play brain games online.
Reality: We’d all be better off practicing good health habits, so don’t stop. Personally, I am highly in favor of the red wine. However, even people in terrific health and with access to the best medical care may still develop Alzheimer’s. Nothing is a sure thing when it comes to this terrible disease. Keep your body and mind in tip-top shape because it will make you feel better now. Honestly, now is all we have, so enjoy it. And, you can forget the coconut snake oil. Spend your money on the wine.
Do you remember your very first day of school? I recall having mixed feelings about starting Kindergarten in 1960 and I can recall the day quite clearly. Here's my story.
Situated in the center of our small town, the old brick building had creaky wooden floors, wide staircases and high, very high ceilings that loomed large above the heads of the elementary-age children. I’d been inside the school before, walking through the main door alongside my mother and then waiting on a rickety folding chair in the empty hallway while she attended parent-teacher conferences for my older sisters.
This morning was different.
Pale, skinny and wide-eyed, I was now the student.
Gray-haired Miss Wallace, the school’s only kindergarten teacher, was at her classroom door greeting everyone with a kindly smile.
At the back of the room, mothers sat on a long bench and chatted in low voices. They wore prim dresses or skirts, held handbags and appeared happy to be dropping off their children for the morning.
Those freshly-scrubbed children played in the center of the room with wooden toys and cardboard building blocks that looked real but were surprisingly lightweight. Boys were stacking the blocks high and then knocking them down with gusto. Quietly, the girls withdrew to the sides to watch the boy’s antics while others made their way to the play kitchen with its small cupboards and pink appliances.
I held back, clinging to my mother.
At home earlier that morning, I’d cried hard and said I was sick, much too sick to go to school.
Now, here in the classroom, I felt simultaneously fascinated and repelled. Part of me thought this might be a interesting adventure, but another part of me knew – even then – that school would change my carefree world.
I understood how my sister’s lives were dictated by school. They woke early, rode the school bus, and then toiled over their homework at the kitchen table instead of lounging in front of our new television set. The school calendar ruled what they could do and when they would do it.
Even though the playtime looked fun, I didn’t think I’d like school.
Suddenly, a loud bell sounded, jarring the kids from their games and making the mothers sit up taller. From the hallway, doors closed and the low murmur of teacher’s voices could be heard in their classrooms.
The kindergarten door remained open.
Miss Wallace guided all the children into a tight semi-circle where she read from colorful storybooks. Then she announced we would be painting, and who wanted to help set up the easels? With great excitement we put on our smocks and formed two lines.
My mother had promised she wouldn’t leave, but the door was left open for a reason.
Out of the corner of my eye, I saw the low bench was now empty. All the mothers had gone. Tears stung my eyes, but there was no going back.
I was a kindergartener now.
I am not a religious person. I’m not even sure I believe in a higher power, let alone one true God. Even so, for the past several years I often find myself praying.
When I do pray, it is always about my mother who has Alzheimer’s disease.
My prayers are never about reversing or even improving my mother’s condition because it is simply too late. She is entering the latter stages of dementia and has already lost so much cognitive ability. Even with all the research and focus on Alzheimer’s, there is no cure and not even effective treatment or drugs that will slow the progression of this elusive disease.
Alzheimer’s is a dark, bottomless pit.
Instead of a magical cure, I pray for an end to my mother’s life. I ask God to ease her into death, and do it soon.
Ironically, Mummy, as our family often calls her, is in remarkable physical health. At age 92, she takes few medications and is ambulatory. In fact, with the aid of a walker, Mummy strides up and down the halls in her care center, sometimes for hours.
When she is walking the halls, Mummy often appears to have a purpose and a destination in mind.
But looks can be deceiving.
Up close, it is immediately apparent Mummy is locked into a prison from which there is no parole. While Mummy may not have major physical ailments, there is no doubt that she is suffering terrible mental anguish. Alzheimer’s has wiped away most of her brain, including her memories, personality and ability to communicate. Every day she seems to withdraw a little more, and I’m no longer sure she even knows I am her daughter.
Mummy’s dignity is also ebbing away. She now needs help with everything, even the most basic human functions.
At this point, I believe she is simply existing in her body.
Mummy’s situation is especially ironic.
If anyone knows how tragic Alzheimer’s can be, it is my mother. She lovingly cared for my dad — who also had the disease — at home for many years. Before my dad showed signs of memory loss, Mummy was the primary caregiver for her own mother, who had some form of dementia. Then, she managed the care of her brother, a lifelong bachelor, who had probable Alzheimer’s.
Mummy experienced the devastation of Alzheimer’s disease firsthand. Time and again, she told my sisters and me that she did not want to continue living if she had advanced memory loss.
How can I help fulfill her wish?
Although I’ve seriously pondered it, there is no legal way for me to help my mother die.
Even if we lived in a state where choosing death is an option, Mummy would have to possess the mental capacity to make this crucial decision and then personally carry it out. Sadly, she is far beyond the point of making any decisions, especially the choice to end her own life.
However, I believe individuals will eventually have more control over how and when they die, including decisions of how long to be kept alive with severe dementia. It is long overdue.
Until then, I keep praying — just in case there is a higher power.
God, it’s me, Nancy. My mom is ready. Please help her die.