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Reflections on My Journey through Alzheimer’s
I am trying to write about and share my current journey with Alzheimer’s in the hope that it might help others.
Most people live mentally in the safety of the past or the freedom of the present moment. Often this limits recognition of the need to accept change, particularly the kind that comes with old age. When our bodies or minds betray us, we cling to our familiar surroundings as safe places because relocating is frightening.
But I personally have always focused on both the positive and negative possibilities of the future. When at 88 I was diagnosed with Alzheimer’s, I knew from my mother’s fourteen-years with it that I might soon require caregivers. I don’t have enough money for a Nursing Home. After asking God to tell me when I needed to stop driving, I had two altercations with stationary objects. I took that as the answer that I needed to stop driving. Shortly afterward I started living every other three months with two of my children and their spouses, which gives each couple breaks and I help some with groceries. But this way the money I have won’t continue to be used up by rent and utilities if they ever need the help of paid caregivers. And at this point I’m only a mild challenge.
Many friends don’t recognize that I have Alzheimer’s because I’m only with them for short times and my age group is mostly a bit forgetful anyway. And I’m still aware enough to make lists and keep a calendar with me. Most of my forgetting involves words and names. Thanks to my computer and Google, I can still write, though it is much more tedious. Probably because of my mother’s Alzheimer’s, I recognized the beginning symptoms and had a Nuclear MRI that showed that there were areas of my brain not getting enough blood. I’m now 89, but my doctors say I am very healthy and may live a lot longer. So, I am getting infusion treatments that may slow down the losses. I go to Twelve Stones Infusion Centers in both Nashville and Memphis. These are some of the best hours in my old age life. The personnel are not only efficient and kind, but hilariously funny and fun. I look forward to this hour every two weeks. And they have uplifting scripture quotes all over the walls and offers for prayer either with or for you. And in the information handout they stress that all genders and combinations are equally welcome. Also to ask if help is needed for financing. Since I have four generations of gays and lesbians and one trans in my family that I know about. I see this as a plus.
I’m consider myself blessed to be one of the 30 % of those with Alzheimer’s who are aware of having it. I think that helps on both sides, mine and my family’s. But I also admit that I would never have made it this far in life without accepting the unconditional love of God fleshed out in Jesus. My mom didn’t know she was losing it mentally. She once said, “Am I doing something wrong? I can tell by your face that I’m upsetting you.” There have been a lot of hard challenges in my life and I was losing it in many ways in the early easier times before grace became a conscious part of my journey. But mom’s slow dying by inches for fourteen years tested my faith more than anything else. A few days after her funeral I was waiting in my car for a friend and mentally yelling at God in anguish, “WHY? WHY! WHY!” I wiped away tears and tried to get a grip by going into a small shop there. The first thing that jumped off a stand at me was a card with big letters in bright colors that said, “EARTH HAS NO SORROW THAT HEAVEN CANNOT HEAL!
Wonderfully, in my old age, I have become much more able to live in the present moment. And one of my best gifts is being able to laugh at myself, so now I get to laugh a lot more. A sense of humor is definitely a survival skill for old age. Playing a word form of Charades when I forget something can be fun with family.
Perhaps the biggest blessing is that in the past I have received grace to grow stronger and more loving most often through the hard times. So, I pray for grace to somehow make it through this at least being aware enough to be kind.
Please feel free to pray for that.
Earth Has No Sorrow that Heaven Cannot Heal
In my sixties, it hit me that most of my misery comes from a misunderstanding about what life is actually about. This life isn’t about being happy, it’s about being transformed. Happiness is the dessert, not the main course. Unfortunately, I ( and probably most of us) don’t change easily. So, it’s the challenges in life that cause us enough pain to accept the need to change and to also admit we need Grace. Later life seems to be about stages of letting go of the many things, pleasures, people, and even achievements that we think we need to be happy. Letting go of these idols is painful. And my desire to protect both myself and even those I love from any suffering often circumvents what God is trying to do in my and their lives. But, Whatever the challenge is: 1. If God is allowing it, there is a purpose. 2. Jesus has been there, experienced it, grown from it, and is in it with us. 3. If it’s happening in this life, it is temporary. 4. There’s a “pony” in it for someone, even if it’s not us. My mother’s fourteen year losing battle with Alzheimer’s was the hardest test in my past life. She came to live with us at the age of sixty-six before we knew what Alzheimer’s was. After seven years, we were in a financial crises so both of us were working, our oldest three children were in college, so we used Mom’s social security to pay for her caregiver during the day. But then she began to run away at night, so we wired our nine doors shut. Then in the middle of the night, she would try to cook and forget and leave things burning on the stove. Finally, we realized that she needed to be in a nursing home for safety. Everything in me protested. The Sunday after we put her in the nursing home, I was driving home in the evening from my job as DRE of Catholic Education at Ft. Campbell, Ky. I had not managed to get to Mass that morning and our church didn’t have a Sunday evening Mass. I felt a great need for the Spiritual and emotional support of Church. Driving home through a poor rural area, I notice people going into a tiny sort of ramshackle church. I thought of stopping and joining them, but they were all black, so I felt a white stranger might make them uncomfortable and I kept going. It had begun to drizzle and I noticed an elderly black man dressed in his “Sunday go to meeting” suit walking toward the church, so I stopped and offered him a ride back to the church. When we reached it, he cordially invited me to join them, so I took it as a nudge from the Holy Spirit and did. The God moment for me was when they sang a hymn about someday understanding their troubles. When I thought of black history in the South, their hundreds of years of struggles put mine and even mom’s in perspective and helped me hang in there with both mom and God in the next seven years of her increased suffering. But shortly after her death I was waiting in my car to meet a friend and her suffering and the sorrow of all those years overwhelmed me. I was shouting angrily at God in my mind, “WHY? WHY?” I didn’t want to be crying when my friend came, so I wiped my eyes and went into a small shop where I was parked. As I walked in the first thing that jumped out at me were the brightly colored words on a card right in front of me. It said, “THERE IS NO SORROW THAT HEAVEN CANNOT HEAL.” God is in the timing. And I cling to these memories as I face my own journey through Alzheimer’s. Neither Mom, nor I knew for many years what was causing her problems. Though knowing is scary, so far awareness seems to be a blessing for me and those who will help me make it through. And I cling to the hope that my awareness may help not only myself, but somehow might help others who are dealing with this.
These Three Things Remain: Humor, Music, and Faith
The mind is a mystery. My mother had Alzheimer’s before we knew what it was. Three things seem to out last memory and logic: humor, music, and faith.
When mom was living with us, one day when I was stressed out doing bookkeeping at the kitchen counter, she insisted on starting dinner. So, finally I put a large pot of water on for corn on the cob and a small pot of water for one package of frozen broccoli and told her to just put them in when the water came to a boil. She called me over later saying, “Something’s wrong, this doesn’t look right.” She had put the corn in the small pot where it was now dry and burning and the broccoli was in free float in the huge pot of water. My response was not kind or spiritual. I shook my head in despair and exclaimed, “Oh, my God!” Quick as a flash, she responded, “Call on someone you know!”
Some years after her death, I was leading devotionals at a nursing home. I kept wondering as I spoke, whether I should call a nurse to check pulses, since most of my “listeners” seemed comatose. But when we started singing the old hymns, they all came to life and knew every word of every hymn.
It may be music or it could be faith. Because one of my favorite nursing home stories is about an elderly woman whose memory was failing. A caregiver was helping her get into her nightgown, when the woman asked her, “What is my name? I seem to have forgotten who I am.” Before the caregiver could reply, the woman smiled and pointed to a picture of Jesus on the wall, and said, “Never mind, he knows who I am and that’s all that matters.”
Something Sexy with Feet Called Grace
My mother came to live with us having what we now know as Alzheimer’s. At the time we thought she was just becoming a little crazier with age. Her twin sister’s children had always called her “Aunt Nutsy,” if that gives you a clue. About the third Christmas she was with us, I took her shopping at K Mart for presents for the grandchildren. She was becoming pretty confused by that time, so it turned into a major ordeal. She kept gathering things which were totally inappropriate for the children’s ages. Because my husband had recently started over in business during a recession, money was in short supply. I hated for her to waste money on things no one would want. After a half hour of increasingly less patient persuasion attempts, I was cross-eyed with a headache.
I was about to abandon the whole project and whisper “fire!” in her ear and hustle her out to the car, when what to my squinty eyes did appear, but a blue light special on flannel night gowns . Lack of money had forced us to depend on a wood burning stove for heat in a house totally unsuited for it. So sleeping bags, though cumbersome, had become quite appealing. For a mere three dollars, I might dare to sleep unencumbered enough to turn over. I left mother playing with a musical bear in my hurry to beat the crowd to the treasure. About fifteen women were digging furiously through the pile already. By the time I finally elbowed boobs and stomped toes enough to reach the blue light, I realized mom had disappeared. So I just grabbed something pink and soft. Then hunched over and clutching my prize to my breast, I burrowed my way back out. When I tracked Mom down, she had again swapped all my suggested purchases for toys for tots, not teenagers. I gave up and just propelled her and the basket to the checkout line. As I lifted the pink nightgown onto the counter, I realized it had a lace trimmed neckline that plunged to the waist. It was sort of like something sexy with feet. I laughed all the way home, tension and pain finally melting away. Then while agreeing cheerfully with mom as she admired her purchases, I had visions of cold nights, but hot times, in my sexy flannel nightgown. I call that Grace,
My Good Friday God
What kind of God are you, dying like that?
I want a real God, a “fix it “ God,
not one that gets himself crucified.
You’re just as helpless as the rest of us.
Here we are dying together.
What a weird way to save a world!
Such sorrow pierced your mother.
Yet, she didn’t run away.
She stayed there suffering too.
Was she filled with a mother’s self doubt?
“Could she have done anything?
Would it have made a difference?”
I watched my mother die by inches.
Her dignity destroyed
by fourteen years of Alzheimer’s.
I’ve seen my children make choices
that would cost them for years.
I could only ask, “Am I to blame?”
I listened to my friend whose mind
had become her enemy.
I heard her pain, yet could not help.
I hate being helpless, not good enough
or smart enough to help
even the ones I love the most.
Not long ago, you did miracles
even in my own small life.
Now I just see our brokenness.
You are a Good Friday God.
I think about the expectations
you gave your Apostles.
Only Judas got the picture.
How disillusioned he became.
He must have felt that you
were betraying them all.
Sometimes I’m just like Judas,
recognizing that we
are all sheep being shorne.
I’m even as cowardly
as Peter in asking
more or less, “Jesus who?”
But I know as well as John did
that your love is perfect.
That we need nothing more.
Even though like doubting Thomas
I fear a hard ending,
you are my Lord and my God,
my only God.
So I ask for grace to follow
though through the cross you call,
my Good Friday God.
He Who Began a Good Work in You, Will Be Faithful to Complete It.
In old age, the life question, “Why am I here?” becomes, “Why am I still here?”
In the past fifteen years scientists have discovered that the natural human life span
may be one hundred and twenty years or more. I’m not sure if this is good news or bad news!
Does the Gospel message have any good news for the challenges of later life?
Many people have conscientiously lived the Gospel message, that it is better to give than to
receive all their lives, so they find it difficult to figure out how to answer the call, “Come, follow
me,” when they are flat on their back, stuck in a wheelchair, in pain, and dependent on family
or nursing home care.
I’ve become convinced that following Jesus in our later years is a completely different
call. Jesus does not limit the “Come Follow Me” to his years of healing the sick, feeding the
hungry, and taking the Good News of God’s love to others. It includes following Him, like loyal,
doubting Thomas to Jerusalem, where we know that in worldly terms, things will not go well.
Jesus was in God’s accelerated class. What He learned from His experiences on Good
Friday may take the rest of us years.
Through my years in a wheelchair, I experienced things that I never would have, if I
were walking under my own power. Painful and challenging as these were, they were learning
experiences. Shocks do get our attention.
Shock One: was being imprisoned. I could no longer go either when or where I wanted.
I was helpless and dependent on others.
Shock Two: was that my church community pretty much went about their busy lives without
me. I felt abandoned even by my Christian family.
Shock Three: Though blessed with free air travel abroad, I discovered that the handicapped
are literally hated in many countries. (Note: Many people were kind in these countries, but the negative experiences were a shock.) In the Czech Republic, I was hissed at and we were forced
off the sidewalks into the streets and even out into the rain by middle-aged, middle-class
looking women. In Lucerne, Switzerland a taxi driver with a trunk easily spacious enough for the
wheelchair, vehemently and arrogantly refused to take us from the airport.
In a two story museum in Paris, we were told that the elevator was out of order, though we
could see workers using it. In Vienna, the manager of our small hotel refused to help
us find a safe place on the ground floor for the wheelchair that wouldn’t fit into the tiny
elevator.
The first few times I experienced this kind of rejection, I cried at night realizing that it didn’t
matter to these people, whether I was a good person, smart, talented, or had even achieved
things. I was rejected, because in their eyes I was defective, and that probably threatened to
force them to recognize their own vulnerability as human beings. These experiences made me
feel terribly naked and vulnerable out on the streets among hostile strangers. In fact, we would
go blocks out of our way, when we spotted groups of young skin heads on the street.
Shock Four: When we had to struggle to get me and the wheelchair up long flights of stairs
while hurrying to make a connecting train, no one offered any assistance, some even
angrily pushed past us. Those days left me with both a great deal of physical pain and the
emotional pain of feeling so universally rejected.
But grace came in Prague in a huge ancient cathedral. As we toured the cathedrals of Europe
several things struck me. One: the only people actually using them for prayer were the old,
mostly women. Two: The Catholic ones were filled with gold and silver ornaments and
elaborate tombs of Popes and Bishop, the Anglican/Episcopal ones were filled with gold and
silver and elaborate tombs of Kings and Queens and other nobility. The Presbyterian one in
Scotland was a little less gilded, but no less ornate and filled with the tombs of warriors.
In Prague the cathedral not only had many gilded angels, ornaments, and tombs, but one
room with walls almost completely covered with embedded semi-precious stones.
My son wanted to climb to the top of the bell tower and my husband was taking photos of all the
glitter. It was jam packed with tourists, so they parked me in a dim unadorned corner without
any people in it. I was newly wounded by my experiences of rejection and when my son and
husband were gone a long time, I began to feel depressed and sorry for myself. I started
looking around for something that represented the love of God, not the silver and gold in
honor of men. Finally, I looked up at the wall behind me. There was a life size wooden crucifix
with the body of Jesus right over me. We were alone together in the darkness, since the crowd
was entranced by the silver and gold and the famous. I remembered a quote from Paul Caludell, “Jesus did not come to explain away suffering or remove it. He came to fill it with his presence.”
Somehow in that moment, I experienced a oneness with Him. We were in this together. I
was not alone and never would be.
God chose, through Jesus, to experience our loss of purpose, imprisonment, falling
under the weight of the cross, needing the help of strangers, being
stripped of image, being rejected by the world for vulnerability,
being abandoned by friends, suffering physical and mental pain that makes the minutes
seem like hours and the hours like eternity, and even finally feeling abandoned by God.
Yet, still saying, “ God, into your hands I commit my spirit.”
I knew then, that He is not only with me and all of us, but He is in us, experiencing
everything through us. Right then, right now, and always. He told us that whatever is done to
even the least of us is done to Him. And in the helplessness of old age, we are finally freed to
accept being the least, those totally dependent on God. We are not alone, ever. And
when that becomes more important to us, than all the losses we mourn, I think we get to go
home.
Call on Somebody You Know!
I have been creating and leading devotionals at a nursing home for about a year and a half. This is a rich experience in every way. Speaking to a group of people, most of whom are comatose or deaf, is humbling to say the least. And spending time with a dear friend there, who is losing it mentally, triggers memories of my mother’s journey into the darkness of Alzheimer’s.
Sometimes the caregivers and I share a moment of gentle humor, that brings a tiny sunbeam into the darkness of the situation. It’s really the only way you can persevere in this kind of situation.
Interestingly enough, with my mom, flashes of her own humor would surface unexpectedly. When she was still living with us, she would want to help me, though she was no longer really competent. One day I was working at home at the counter in the kitchen. She kept offering to start dinner for me, so I finally, to just get some time to focus on finishing my work, put a large pot of water on to boil for six ears of corn and a small pot of water on for a pack of frozen broccoli. I told her to put them in when the water came to a boil. A while later, she said, “Eileen, something doesn’t look right.” So, I stopped reluctantly to check it out. She had put the small amount of broccoli in the huge pot of water and all the ears of corn in the small pot of water, which had all boiled away.
I said irritably, “Oh, my God!”
Without a blink’s hesitation she replied, “Call on somebody you know!”
Laughter: Carbonated Grace 