April 29, 2016 – I read a blog the other day written by a busy young mother. In her rush she was planning to meet with other mothers at the park where the children would play and the mothers could chat.
All was going well and many of the mothers were sharing and giving the pat answer,”fine, fine I’m doing just fine, and everything is fine.” Then one mom confessed that she had lost her temper that morning and had thrown a plastic bowl across the room.
The flood gate was opened. “Not you,” exclaimed some, noting that the plastic bowl thrower was their perfect model mother; the one who totally had her act together and never “lost it.” Immediately, other perfect moms’ confessions spilled over the damn in such a powerful torrent of energy that any amount of unnumbered kilowatt hours could have been generated from the unleashed water fall of similar confessions. This group of what had apparently been a gathering of wonderful modern-day moms who believed they could bring their children into successful adulthood avoiding pitfalls because they were unencumbered with the woes, worries, or problems which other generations have stumbled through. These moms, who radiated patience, tolerance, confidence, understanding and self-control in a manner to be admired were admitting to many of those same stumbling blocks which had tripped their mothers and grandmothers. So what did the moms lose? Their composure, commitment and resolve to never give in to those feelings of temper, anger, rage or frustration even for a brief moment. However we are mere mortals. Even devoted mothers who would throw themselves under the bus for any and all of their children, if need be to protect these Heaven-sent angels from any harm, must allow for a time of saturation when they will lose it, because, after all, we are only human
VERY GROWN-UP MOTHERS – ACTUALLY CAREGIVERS
Most female caregivers who inherit the care of elderly parents or other loved ones are also mothers. The difference being the children are grown and on their own. Mine certainly are and have continued the cycle of life bringing forth grandbabies to the home I had shared with my husband, Ken, before Alzheimer’s. Both of us chuckled as their children became them and they became us. Karma has a way with humanity, but that’s another blog, perhaps from grandparents. We won’t go there today.
I make the comparison because as the main caregiver for Ken, while I did have the help of three wonderful men at different times: Ben, Crizaldo and David, the responsibility was mine, and on one of my blogs I wrote about my meltdown, but there were times when I just lost it; one not to be confused with the other.
Meltdown: For me it was an evening when a small opossum bit my thumb as I reached into a near-empty bag of cat food. The realization of the attack sent me into deep despair topped off with exhaustion, unbearable feelings of aloneness and frustration believing I could no longer handle the immense responsibility of Alzheimer’s caregiving. Finally melting into a glob of disintegrating humanity on the garage step I said through my sobs, “I just can’t do this any longer.
Losing it: A momentary reaction to frustration and the temporary loss of control to day-to-day happenings when one’s plate becomes overwhelming filled with all that needs to be done, resulting in loss of temper and composure.
THE PATIENT BECOMES THE WEAPON
Ken was very strong with admiral upper-body strength, and there were many times he sent our granddaughter, Kristina, who assisted the men while I recuperated from a horrific auto accident, off to her bedroom in tears because he had punched or hit her as he faded further and further into the deep bottomless pit of Alzheimer’s. Another day when I was assisting one of the male caregivers who did the showers and changes Ken dug his closely clipped fingernails deep through my loose-knit sweater and peeled back several layers of skin across my forearm. I clenched my teeth in pain as he seemed to dig deeper and deeper into the flesh. Upon later examination I washed, then pushed the pleated skin back in place, covered it with an antibiotic cream and bandaged the throbbing area until it healed. I was injured and composed. I knew Ken didn’t hurt me, the demon Alzheimer’s hurt me. It healed without medical attention and I was fine. I was pleased with myself that I hadn’t lost it.
As his Alzheimer’s grew worse so did his anger and his need to put his caregivers in their place. One morning as Crizaldo (a caregiver by profession) finished with Ken’s shower and change of clothes the two of us guided Ken to his chair in the family room. Without thinking I stood in front of him as he sat down. There was no warning, no shouts saying to me, “Get out of my house.” He just pulled back one of his legs and shoved his foot into my knee with such force I went sailing across the room. For a second I just sobbed, grabbing my knee believing he had caused it to bend backward. It felt that bad. I did manage, though, to crawl back to him calling him and his mother a despicable name, and then I gave his offending leg a good slap as I said, “No! no! no! Don’t do that!”
Crizaldo looked at my knee, rubbed it a bit in his professional way and I limped away. I had lost it, and my heart was filled with embarrassment and sad regret. I had slapped my poor mentally crippled patient, the man I loved — the father of my children. I felt wretched. I was wrong. I knew it and Crizaldo knew it. I hobbled into the safety of another room, eventually cried, and then looked Heavenward and apologized for losing my composure, my temper, and my resolve to care for this good man till death do us part.” I just hope that as Ken looks down on me from his Heavenly home, he can be forgiving knowing that I was and still am only human.
THERE’S ALWAYS A TOMORROW
April 22, 2016 — It pays to always read further, but I didn’t do that until I was ready to post this award-winning essay given by the Alzheimer’s Foundation of America and posted on the Alzheimer’s Reading Room. This talented student won her award in 2012, not this year. 2016’s winners won’t be announced until next month.However, we can all enjoy these smart and poignant entries from four years past. Read the 2nd and 3rd place winners by going to www.alxzheimersreadingroom.com/2012 – Kearney – write -award -winning.httm/ and then watch this for this year’s fabulous young students vying for 1st, 2nd and 3rd place winners.
By Grace Kearney
The waiting room could belong to a dentist’s office. There are bright lights and comfortable chairs and plenty of People magazines. But the vacant expressions of those waiting makes it clear that they are not about to have their teeth checked. Standing inside the geriatric psychiatry clinic, I feel as if I have already entered something more personal than an internship. Before I can fully absorb the scene, a nurse calls me into her office. She is administering a diagnostic test to a new patient.
“Where are we today, Mr. Perkins?”*
“Appling, Georgia. I wouldn’t dream of leaving.”
“What day of the week is it?”
“What day of the week was it yesterday?”
The Red Queen’s words spring into my head. “Now here, we mostly have days and nights two or three at a time, and sometimes in the winter we take as many as five nights together – for warmth, you know.”** As an eight year old reading this passage from “Through the Looking Glass and What Alice Found There” for the thousandth time, I found myself laughing long before the punch line. Residing permanently on this side of the mirror, I failed to grasp the absurd logic of the Red Queen’s statement, and could only laugh at the suggestion of stacking days for warmth.
In a nurse’s office far from that childhood bedroom, I hear echoes of the Red Queen in Mr. Perkins’ words, but they are no longer humorous. For it is not a fictional character speaking; it is a person, one for whom multiple Tuesdays is reality. Like the guests at the Mad Hatter’s tea party, Mr. Perkins is trapped in time, trapped in an inner world that clashes with his surroundings, yet he is not aware of the dissonance.
Months of observing the same sad scene reveal the futility of trying to convince Alzheimer’s patients that they are wrong.
These patients are not waiting to be brought back to the real world; they are seeking someone who will validate their version of reality.
Gradually, I come to understand that the world inside each patient’s mind is as legitimate as the world inside mine—that our interior reality is the only one that matters. Perhaps there is an objective reality to which most of us subscribe, but the smaller details, the intricacies of the world around us, are to each person unique. My perception of reality, though unaffected by brain disease, is not universal. Acknowledging this, I am better able to accept and welcome the range of perspectives I will encounter in this clinic and beyond.
When Mr. Perkins returns to the clinic six months later, I do not attempt to bring him to Baltimore, but instead travel with him to Georgia. When he asks me to close the windows because “the flies are ruthless this time of year,” I comply, knowing that the flies are as real to him as the Baltimore heat is to me. In doing so, I accomplish what my eight-year-old self could not have imagined. I manage to join his tea party.
For the past three years, I have worked as a research assistant at Johns Hopkins Hospital in the Department of Geriatric Psychiatry. As part of the research practicum course at my high school, each student has the opportunity to find a mentor at a nearby research institute and complete an independent research project throughout their junior and senior years of high school. Though my research primarily concerns autism in older adults, I have had the chance to meet geriatric patients of all kinds.
Every Wednesday afternoon, I leave the hospital and go across the street to the outpatient clinic, where dementia patients are brought in by their caregivers to meet with a doctor and receive treatment. I have met with them, spoken with them, learned their stories, and told them mine, only to be unfamiliar to them the next week. Still, their presence in the clinic has made an impact on my understanding of Alzheimer’s disease, my attitude toward these patients and their families, and my plans for the future.
My interest in the aging mind springs from a childhood spent listening to stories of my father’s patients, who always seemed too old to cure but too alive to ignore. Though the majority of his patients were inflicted with Alzheimer’s or similar degenerative diseases, I would not realize this until the end of the story. The description of a particular patient’s personality and background always came first; their medical issues later, almost as a side note. I learned to consider patients as more than the sum of their parts, as people first and foremost.
My father is an end-of-life care physician, and unlike cancer specialists or brain surgeons, he treats problems that everyone will face someday, if we are lucky. No one can avoid growing older or watching as loved ones grow older, and seeing firsthand how painful the transition to old age can be, particularly for those inflicted with Alzheimer’s disease, has instilled in me a desire to help geriatric patients of my own one day.
Spending time in the geriatric psychiatry clinic has taught me lessons in life as well as medicine. The day I recognized an Alzheimer’s patient’s wife as the receptionist who had snapped at me earlier, I learned compassion. You never know what sort of pain a person is concealing behind their plastered smile. When I had a conversation with a man who needed several reminders to keep his shoes on and his shirt buttoned, I learned patience. Alzheimer’s patients may often seem as stubborn and confused as young children, but they prove invaluable sources of wisdom if you only pause to listen. But perhaps most importantly to a medical career, I learned that caring for those with Alzheimer’s is not about ridding them of their disease (such a thing is currently impossible) but helping them live in a way that is dignified and graceful until the very end.
Ask any child what a doctor does, and he or she will tell you that a doctor saves lives. To me, saving a life does not always mean finding a cure or even making a person live longer. It means allowing patients to live according to their own desires. It means placing yourself in the shoes of patients, and taking the time to learn about their family, their relationships and their past in order to figure out what those desires might be. It means opening your mind to the possibility that there are some things you will never understand, and accepting the fact that others do not see the world the way you do.
In the conversations that took place in that geriatric clinic each Wednesday, there was one phrase I heard more often than any other. When patients were asked for their most fervent desire, I heard again and again “I just want to go home.” This sentence contains what I think should be a doctor’s main objective—to find that place where a patient can feel at home and do everything possible to help them get there. As I pursue a career in medicine, this is how I want to save lives.
Posted in the Alzheimer’s Reading Room by Max Wallack 2012
April 15, 2016 – Recently I read on Alzheimer’s Reading Room a post by Max Wallack, who is also a student at Boston University Academy. This enterprising and helpful young man is also the founder of PUZZLES TO REMEMBER, PTR His organization delivers puzzles to nursing homes and to Veterans’ hospitals for Alzheimer’s patients and persons with other forms of dementia.
The experience of Alzheimer’s and other dementias is not new to Max. His great grandmother, Gertrude, suffered from AD and he was not only a devoted grandson, but helped with her care until she passed on from the disease. His recent post on the ARR, with Bob deMarco as editor, writer and owner of the blog, relates three essays submitted to the Alzheimer’s Foundation of America. The foundation offers scholarships for the best Alzheimer’s essay from a high school student. The winner this year is Grace Kearney, a young woman from Baltimore, Maryland.. who is doing an internship at John Hopkins Hospital in their geriatric psychiatric clinic and planning on a medical career in this same field.
THROUGH THE LOOKING GLASS
In her essay, Grace takes the reader on a journey through the looking glass comparing the “stuck in time” adventures of the story characters with the stuck-in-time patients she visits and observes at the clinic. She notices that one who suffers from AD lives in a reality unlike any who are a part of the real world and not of dementia. The Red Queen brings it all about, but ultimately Grace can identify with the imagined tea party which she dubs as Alzheimer’s World.
Grace’s essay won top honors, but the runners-up are worth the read as well. Next week I plan on posting at least one of the essays for your reading. All three are well done and all three will take you on a familiar trip if you are a dementia caregiver, or an unfamiliar trip if you are not a dementia caregiver.
NEXT WEEK’S READ
So, look forward to next week’s posting from some very talented young people and their experiences and thoughts about our shared and dreaded disease: Alzheimer’s.
STRANGERS IN OUR LIVES
April 8, 2016 – Diseases that damage the brain bring about confusion not only to the victim, but to the family and loved ones of the victim as well. In reading other blogs about Alzheimer’s, usually written by a loved one, a spouse, a lover, a son or daughter, niece or nephew, or a very close friend, this act of sharing brings comfort to participating caregivers. Reading from the Alzheimer’s Reading Room by Bob deMarco, from the posts I have read, I don’t recall that Bob’s mother was ever anyone other than mom or Dottie. The woman was able to keep in touch with her son on a limited basis, but his success in her care appeared to be based on their strong child/parent relationship, and obviously his devoted love for her. It seemed that she was never a screaming Banshee or a mean Broomhilda or had adopted another personality; she was always mom or Dottie. Apparently Dottie was seldom, if ever, a stranger to her son.
When my husband Ken was Ken, that’s who he was, but when the disease took over, he could quickly become a stranger to me, and I to him. He wanted me out of his house and often told me in no uncertain terms to get out, but if he saw I intended to drive away in our vehicle, he would forbid me to drive his car. We often had a grabbing match over the keys. One time it was so intense his final grab sent the keys flying in all directions as the chain broke. I learned I could and should have just walked away to avoid his becoming violent.
My stranger could also be frightening at times such as the day he was sweeping the kitchen. I had wanted him to do another chore and called out my simple request across the room. He grabbed the dust pan and carried the broom to where I was, and in my face through gritted teeth he said, “Will you stop telling me what do do.” For a moment I was a bit fearful that he might hit me with his hand or the broom, but trusted he wouldn’t hit a woman. However, I was never certain that he wouldn’t if he became angry enough as his AD persona. I dubbed Ken’s other self, the AD portion of my once-loving and gentle husband Mr. Hyde based on the late 1800’s novel about the kindly Dr. Jekel and his chemically altered counterpart Mr. Hyde.
There were times when he reverted to his former youthful self. As a 12-year-old, Buddy could be belligerent and powerful when he felt threatened about having a strange woman roaming through his parents’ house. This third personality I called by his life-time nickname: Buddy.
“LIVING IN THE SHADOW OF ALZHEIMER’S”
This is the title of a blog that I read daily. It’s written by Sheri Zschocher about her husband. The subtitle of her blog is “Living With Bob and Al.” Bob is her husband and Al is Alzheimer’s. Sheri writes in 3rd person which gives the reading an extra perk as she tells her story within the backdrop of Alzheimer’s which includes her two daughters and tales of her simple pleasures of nature photography and Bob’s day care while she works to support the two of them. Bob and Al’s day care is referred to as his “work.” Bob believes that he does spend his day working, and often he would like to let many of the other employees go as they don’t work nearly as hard or as well as he.
Even though my days as an Alzheimer’s caregiver have passed I find myself still keeping in touch with the Alzheimer’s world in general. Hoping and praying that research will prove successful and a cure will be found, or at least a way to stop the dreadful disease from the total destruction it now causes to the mind of the victims, bringing sadness and grief to the entire family.
RELATIONSHIP ADVICE FROM ONE WHO IS THERE
April 1, 2016 – Whether by death or some other means, lonely older singles often need a little bit of relationship advice as they face a new chapter in their life. We somehow believe that when something is over, it over. That’s not exactly true especially when one’s life has been filled caring for a partner with a terminal illness lasting over a long period of time. The decision doesn’t happen all at once. Slowly your thought processes change many areas in life. Who we were is no longer the truth of who we have become including your decision about relationships. It’s been almost two years since my husband Ken passed. This following nearly 15 years of him suffering from A.D. For the remaining spouse he or she is left without a partner in any way. The remaining spouse is left to make adjustments and begin again all alone. This relationship advice from me is that you do need to take some kind of action.
RELATIONSHIP ADVICE FROM MY SON: “IT’S DIFFERENT NOW, MOM”
That was a beginning statement from my well-meaning son as he recognized that his mother was no longer married and may want to enter the single’s dating field once again. I informed him that I was well aware that dating had changed to an extreme from the time his father and I first met. Our mid-century American courtship was much different than the dating scene today. I further informed this middle-aged man, who was my youngest child, that finding someone new in my life was the furthermost thing from my mind, if found there at all. I was committed to Ken, and after three different ceremonies where we exchanged our “I do” I wasn’t interested in finding someone else to fill his shoes or his bed. Yet, there was a social aspect to think about. What were my interests and expectations? What about someone who was just a friend?
WHAT COMES NEXT?
I guess good communication would be the first guideline. If someone of the opposite sex did ask me to have dinner with him I would expect just that and tell him so. A nice dinner filled with conversation about what we have in common, our interests, even remembrances of our former spouses, the life we lived and our families. The acquaintance probably wouldn’t be new. Instead, probably someone I had known for a long time through various organizations to which we both belonged. This knowledge would supply me with his solid background, his interest in a nice evening with a female friend and nothing more. In the relationship aspect, I would be looking only for a friend. So where do we find this or these friends? Where do we spend our spare time? In classes, at church, at work, at a community service project? You can find your jewel just about anywhere when you take time to evaluate your own investments in your spare time.
FOLLOW THE PATH: WHO AM I?
I am a writer. Not only do I enjoy the written word in books, but I enjoy a good play or movie. Such entertainment would be something to which I could relate. Something well done and without a lot of blatant sexual activity, peppered with offensive language or slanted uncomfortably throughout with double-edged innuendos. At one time I did belong to a writers’ group, but it was entirely made up of women, but there are book reading clubs out there as well whose memberships are open to both sexes. I am also a woman of faith so another place where I might find such a friend is by going to church and being a participant in activities geared to my age group.
I love art and have a splattering of talent, and it’s always been my desire to take an art class to develop what I already have. Art classes are filled with all kinds of interesting people. So if you are searching for a good friend, then go to those places where your kind of people hang out.
If you are ready for such a step in your life, to start a new relationship, or several, the important thing would be to start. It’s difficult to leave a comfort zone, to think of someone new, to open yourself to the vulnerability and risk whenever you try something you haven’t done before, but it is also important to keep on growing, changing and trying new things. Exploring a new relationship, another person in a different way, could add to your enjoyment of life and help fill in some of the loneliness left by someone who was dearly loved but is no longer available.
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LIVING THE SIMPLE LIFE
March 26, 2016 – As younger people we lived the simple life. Beginning as two, my husband, Ken, and I lived a life that was not only simple, but good. Then we added a baby girl, then two, and life was still simple and good. With the addition of three boys our simple life became a little less simple, but still very good.
I remember spring and Easter when we looked down the block filled with new homes. Easter Sunday brought out just about everyone dressed in their new spring finery, flowing from their front doors as the neighboring church bells rang out declaring that, “HE IS RISEN.” With the little girls adorable in frilly dresses their skirts twirling in the spring breeze and Easter bonnets secured with a ribbon under their chin, the boys looking sharp in white shirts and ties, and moms with dads as matched pairs, we were all near the perfect picture of a happy, contented family. All were celebrating the symbol of spring and new life at the churches of their choice. Our multicultural neighborhood shared the commemoration of Easter and the resurrection of our Lord and Savior, Jesus Christ: Catholics, Baptists, Lutherans, Protestants, Methodists or Mormons; it didn’t matter in our simple life. We were young and filled with the exuberance of youth, peace and a new spring filled with promise.
Following church services, either the family came to our house for the rest of the day, or we went to theirs, or we met in a park with even a larger extended family and friends galore. The children searched for hidden eggs and even the dog found a few. With her big brown Cocker-Spaniel eyes, she looked up at us sheepishly dropping her colored egg, wondering if she had done something wrong. Then she was off again to join the children in search of more of the strange colored balls. With grandparents, aunts, uncles and numerous cousins we were joyful and life was good. No one was confused, forgetful or had any cognitive loss. The word Alzheimer’s was foreign in our ever-expanding circle of happiness.
WHEN DID THE CHANGES BEGIN?
Often change comes to people like a shot in the dark, but more often change is a gradual happening and the simple life disappears. The first sign of the dreaded disease of Alzheimer’s came to the paternal grandparents of our children. Even that destruction was gradual as it ate away the minds of Ken’s mom and dad. They both would succumb completely before they passed. Again, Alzheimer’s showed it’s ugly monstrous head to my own mother overlapping the life of Ken’s mother. Little by little my mom vanished into someone else. Thankfully, my father escaped the cruel disease.
THE NEXT GENERATION
My sister-in-law, Loretta, was the next to show early signs of cognitive loss as she drifted away from reality and the family. Her diagnosis was only a few years ahead of her brother, my husband Ken. They journeyed into the unknown together for several years before she was confined to a care facility one hundred miles away. My Ken escaped his AD when he passed on to another realm of eternity nearly three years ago.
THE PROMISE OF EASTER
We no longer have a simple life, but it is still good. My children and their progeny remind me that the family, and service to others is what our existence is all about. It is because of Easter and our greatest gift ever: the voluntary sacrifice of his life;Jesus Christ paid for our sins and wrongdoings so that in the eyes of His Father and our Father In Heaven we may come home; our sins, white as snow, after we repent, are all forgiven through his Atonement. The slate will be wiped clean in a Heavenly place where we will be with our loved ones and live together throughout eternity as resurrected beings because of this precious gift from our Savior Jesus Christ. We are reminded yearly of this gracious offering by God’s son every Easter. So remember the simple life and what is most important. Take heart and have a wonderful Easter with family and friends. And remember, if you will, go to church, praise and pray and thank Him for his gift.
A CALLING AND A CHOICE
March 18, 2016 – There really isn’t a profile of the perfect Alzheimer’s caregiver. Instead it seems to be a calling that someone steps up to and takes. Someone just like you or just like me. The profile shows many, but not all, caregivers are often a child of the person who is in need of caring services. Gender stats also show that the caregiver is usually a woman. Not to imply that men are not capable of looking after mom and dad, it’s just unusual. That’s understandable as women are quickly associated to “mothering” or “nurturing” as part of their natural-born talents that appear to be inherent to their sex. That summation is not meant, in any way, to be biased against men. Just as there are “Stay-at-home dads.” men who take care of the home and children, usually with the career wife’s blessings, these same dads will often be tomorrow’s caregivers when their parents are in need of a role-reversal.
LOVE IS ALWAYS PART OF THE PROFILE
One of the men who helped me care for my husband Ken, Crizaldo, believed that caregiving is a “calling.” He was a relief for Ben and later David, who was with Ken six days of the week. Crizaldo’s full-time job was working in a care facility where he was responsible for several of the residents. There were times when he and I talked about caregiving. Crizaldo mentioned that some people just should never be caregivers. In a profile description he found that to be good at what you do, you have to love people. Dedication went beyond just a job. At work good caregivers needed to be sure their patients remained as comfortable and as happy as possible; treating them as you would one of your own loved family members. Crizaldo mentioned that he noticed that some of the employees were obvious in their lack of dedication in what they did. They put in their time and that was it.
BASIC EXPECTATIONS THAT ARE PART OF THE PROFILE
My husband’s caregivers were always in the former profile. For a long while I was their assistant, the backup person helping with showers, dressing, and all the other duties that belong to the “calling.” Fortunately, the men were responsible for shaving, hair combing, keeping him clean while eating, changing dressings if there were wounds to care for and changing diapers when necessary. When he was calm and in a good mood I managed to cut his hair as I had done since he retired. Ken’s wardrobe was kept simple for the caregiver’s convenience and for Ken’s comfort. Sweat pants and sweat shirts were always the order of the day unless there was a hot spell. During those times adjustments were made.
Caregivers were also available to help Ken into a wheelchair and into the car for doctor’s appointments or any excursions, which were limited especially as the disease progressed. These men also included simple cooking for the patient and light housekeeping.
HOW DO YOU FIND A GOOD CAREGIVER?
Finding someone to fit this profile and do it with the attitude of love and service I was looking for, was not an easy task. Our first caregivers came from an agency and were a disaster, though I know that has worked for others. We then went through an employment service that was part of our church. It’s always important to contact former employers familiar with their work. Eventually they even recommended each other. The main focus in caring for patients, especially patients with some sort of dementia, is to remember that they can’t help themselves, but we can help them, remembering always that this is a labor of love. As a family we grew to love these good men and all they contributed to easing our burden of care. Their profile of love and service set a high standard of caregiving that would be difficult to duplicate.
March 10, 2016 – Life is full of lessons and my experiences as an Alzheimer’s caregiver have been a good teacher. I have mentioned in my past writings that my husband Ken is my fourth Alzheimer’s patient. My first patients were Ken’s mother and father, Overlapping their illnesses my mother began showing signs of dementia, eventually becoming Alzheimer’s. With the demise of our parents (my father was never a victim of AD) I remember looking Heavenward and silently asking, “Have I learned enough?” Apparently not. The journey with my husband was still to come. Certainly, not wishing such a horror on anyone, I saw small signs of confusion, forgetfulness and personality changes as early as the last half of the 1990s. Even though I knew AD was coming I still wasn’t prepared for my mate, my best friend, my love, the father of my children, my husband to go through those awful stages: a rotting mind, and eventually his complete memory loss of our family members and the love of not only his treasured grandchildren, but the next generation of great grandchildren.
JUST FRIENDS SHARING MEMORIES
March 4, 2016 – It seems somewhat ironic to write a post about Alzheimer’s memories. Yesterday, while eating lunch with my dear friend Madalyn, we reminisced about our years as spousal caregivers. She has been a soft shoulder to cry on through my years of Alzheimer’s care giving. Her husband Darwin passed several years before the disease took my Ken in October of 2014.
WOMEN OF FAITH
Madalyn and I believe that being mortal is just a short chapter of our eternal progression, and that as spirit children of God we were given choices before we left our Heavenly home. We were advised what to expect as we agreed to spend this time on Earth as mortals. We would have trials and adversity to overcome for our growth and experience. We would know pain and sorrow, but we would also know joy and happiness. We were assured that we would be helped and guided by the Holy Spirit and if God brought us to it, he would guide us through it. Whenever we felt alone or lonely we could talk to our Father through prayer. Gathering all of this earthly knowledge would be for our good.
“I don’t remember agreeing to the loneliness,” my friend mentioned as we stirred butter and sour cream into our baked potato. That’s what we always ordered at Wendy’s for lunch when we met on our girls’ day out. Some carbs, but recommended by our HMO as having no additional salt, so we have control over the salt, but I always managed to cheat a little. Who ever heard of a potato without a pinch of salt?
FAMILY IS COMPANY
Madalyn and I both have granddaughters living with us. She has two and I have Kristina. Yes, they are company and are very helpful, but they have lives of their own and friends, and we wouldn’t want it any other way. We want them to have a life just as we have had a wonderfully full life.
On that we both agree. It’s just that after more than a half century of marriage, it is difficult to lose that one special person who made it all worthwhile, our husbands. During our time spent as caregivers and exposure to the terrible disease of Alzheimer’s we both hope that we have learned from the experience whatever it is that we should have learned.
A FUTURE FUTURE
What we both believe with absolute certainty is that in the eternities to come we will be reunited with these good men, and we’ll pick up right where we left off. Until then we’ll keep our memories, both good and bad, living and learning, doing good when we are able, meet for lunch over a baked potato with extra butter and sour cream, and sometimes remember the past, before Alzheimer’s, with joy and smiles for the good times.
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YOU NEED SOME AIR
February 27, 2016 – It wasn’t me she was talking about, it was my right front tire, but as quickly as I agreed to have it checked the important task immediately vanished. That’s the thing about being a couple with auto maintenance belonging to Ken all of our married life, it was now my responsibility. Just one more straw on the camel’s back when an important member of the team passes on. I don’t like being a widow, and I do miss Ken, but I don’t miss Alzheimer’s.
A GOOD AND TRUSTED MECHANIC IS ESSENTIAL
It isn’t as if I knew nothing about cars. I took an auto shop class in high school where I learned how to check a gas line and auto maintenance basics, starting with how to change a tire. I also knew that when you heard the engine knocking you should get the car in for help as soon as possible, if not sooner. Following Ken’s pattern I took the Ford 150 pickup into Hoang’s periodically for a tune-up, oil change and general check. Hoang was used to working with Ken so he didn’t know me well, but “I do know the car,” Hoang reassured me as I handed him the keys on my first visit shortly after Alzheimer’s became a part of Ken’s life. The two men had become more than mechanic and customer, they were friends. As the new customer, he always asked me about Ken and how he was doing with his sad illness. He advised me when to bring the truck in for a tune-up and oil change, and frowned a little when he found the oil on the dirty side, but all in all he had to admit that I was doing a fair job.
A CAR MIGHT BE BETTER
“Why don’t you sell the truck and get yourself a car,” advised one of my friends. I explained that as long as I still owned our rental property I needed the truck. Besides I have never minded riding in or driving a pickup. It gets me where I want or need to go, it’s dependable, and I don’t have to pay to insure another car, or another registration fee each year. Our other car, a Ford Explorer was totaled in 2010 when we were hit by a drunk driver.
WHAT I DIDN’T SEE MIGHT HURT ME
I suppose I was being blissfully ignorant knowing that the engine was running smoothly although it was son-in-law Mark who asked, after driving the truck one day, how long it had been since I had replaced the shocks. “Never,” I replied thinking in my non-time-advancing mind that it was still a fairly new vehicle. It is not new — not even fairly new. With only 50,000 miles on the odometer it was still not new or fairly new. We bought it in 2001 which makes it a teen truck, and auto maintenance is something one can’t ignore. So Mark bought new shocks, made an appointment with Hoang and the problem was solved. Now when it drives like a truck, it’s because it is a truck.
TIRES NOT INCLUDED
I had always heard that you could test the tread of your tires with a dime, measuring the tread against the edge of a dine held against the tread, but I don’t remember message: if you can’t see Miss Liberty’s head, or was it her skirt edge, that’s when you should be thinking about replacing the tires. Chris, granddaughter Khristina’s special young man, reminded me that worn tread can be dangerous as the grip becomes poor against the pavement which can cause the vehicle to hydroplane when conditions are very wet, especially during a heavy rain. Tires I was not thinking about. I was still in that mind-warp of believing I was driving a fairly new truck so I didn’t worry about inspecting the tires. Occasionally, I did ask Hoang to check the air which he always did, but didn’t suggested that I should begin thinking about getting a new set.
NOW I KNOW
It was just before Christmas when my friend told me it appeared that the right front tire needed air. I still had some shopping to finish, so that’s what I did. I parked at the mall, fortunately finding a space right in front of the store. Upon returning I noticed that I had driven to the cement holding stop and a little beyond. Noticing the misshapen tire hanging over the cement, I said to myself, “I didn’t get air in that tire, and it’s looking almost flat.” Yet, I drove home. The next day it was approaching seriously flat. Nevertheless, I drove to Hoang’s. He had closed early probably giving his employees some hours off for the coming holiday. The next thought was to drive to a nearby gas station. With every rotation I could hear the tire flipping and flopping. That’s when I turned around and went back home.
Chris and Khristina observed the front of my car. “I hope you didn’t damage the rim,” said Chris, warning that rim replacement would add considerably to the cost of new tires. It had been raining that day, but I called road service at AAA. He came in about a half hour, put on the spare, filled it with air, and tossed the flat into the bed of the truck. I was set to drive, but not far.
USING THE INTERNET FOR AUTO MAINTENANCE
I went on line to check Yelps for my first choice where I thought I could get the best price, but the comments from unhappy customers about the wait time to get the tires installed just wasn’t worth the savings. Furthermore, rotation time was also too long a wait to make it worth one’s investment in time.
BIG-O proved to have the best comments, both in wait time, service and attitude. I drove to the nearest store asking how long it would take. I was prepared for him to make an appointment for the next day. Instead he said he could do it right then. With a grocery store directly across the street, I told him I would shop and be right back. One-half hour later, I returned. Even before I looked I cold smell my new tires.
I am certain that the flat tire in my driveway was a blessing. It could have gone flat or blown out on one of my 100-mile-round trips to visit friends and family in the next county, or worse, on the freeway going anywhere. Now when I take a trip, even a short one, I feel safe with my new set of tires. Thank you to the Powers That Be for the flat tire that went flat at a time and place when the problem could be easily solved and for a timely reminder of the importance of complete auto maintenance. Ken would be proud of me – well sort of — and I promise I’ll be more in tune in the future with all of the needs in maintaining my only, and getting older, vehicle.