Help for Alzheimer's

THE DEMENTIA UMBRELLA

 Several years ago, when the husband of my friend, Madalyn, was well into severe Alzheimer’s and Ken’s disease just beginning, the two of us went to several support group meetings.   The speaker one evening was a health-care professional; the title of her presentation was dementia.  How often both Madalyn and I had heard the word interspersed with Alzheimer’s, making us wonder if our husbands had Alzheimer’s or were they demented, having dementia.  Were the guidelines established enough that we could tell one disease from another?

“Dementia,” the speaker explained, “is the umbrella, and under that umbrella the medical community is placing what they believe to be related diseases, even though some people are diagnosed as having dementia.”  She went on to explain dementia as a group of symptoms caused by changes in brain function, or a decline in cognition.  Though defined, it still left us a bit baffled.  However, with so little known about the actual workings of a diseased brain and other neurological disorders, dementia as an umbrella seemed to make sense, especially when the speaker placed Alzheimer’s, Parkinson’s, Lou Gehrig’s disease (ALS) and MS (multiple sclerosis) under the umbrella.  No doubt she included other diseases lesser known to Madalyn and me totalling more than 75 in all, but the link placing them under one umbrella made good sense.  Whether the dementia symptoms may later change and develop into any of the encompassed diseases wasn’t a part of her topic, nor am I a medical person who could make such a determination, but it would seem reasonable to presume that the answer could be “yes.”

Over these past six years, as I have journeyed with Ken into the fog of Alzheimer’s it seems as if the cases under the umbrella are becoming almost epidemic.  I often hear people say, “It’s because everyone is living longer.”  That observation conjures up another burning question.  Is it inevitable that living longer will bring the majority of four score and younger people into the hopelessness of brain disease?

When Ken and I first married we were best friends with three other couples.  We were not a group, but they were best friends, nonetheless, with us, and we have kept in touch with all of them through the years.  Today, two of the women and two of the men are under the umbrella diagnosed with short-term memory loss, two with Alzheimer’s and one with dementia.  All of the disorders began somewhere in their mid to late 70s.  Yet, with our large circle of friends and acquaintances I have also observed early-onset of Alzheimer’s and Parkinson’s, and one death from ALS.

The mother of Barbara, my friend with short-term memory loss, was sent off to a state mental hospital in her mid 50s with what they diagnosed as brain deterioration.  Was it actually early-onset Alzheimer’s?  Earl, who has dementia, is the son of man who suffered most of his life with severe Parkinson’s.  Our  daughter, Debbie, had a favorite beau during their teen years who tumbled dramatically into full-blown Parkinson’s in his early 30s, as did celebrity Michael J. Fox.

With the power of his celebrity Fox brought world-attention, and hopefully more research, to his disease.  Of course, the 40th president of the United States, Ronald Reagan, brought the same extraordinary attention to Alzheimer’s during his 10-year battle with the disease, as did movie great Charlton Heston.  People no longer talk about a second childhood, senility, brain deterioration or sun-downer’s disease.  These umbrella diseases — with people of all ages becoming victims — are no longer swept under the carpet to be ignored as just some old folks’ ailment.

If there is a question here it would be:  Will there be a breakthrough in finding a cure, or at least management for these dreadful diseases?  If so, when? And, if a reliable treatment for AIDS was found in a relatively short period of time, what’s holding up research for The Dementia Umbrella?   According to a recent paper from Johns Hopkins the future looks alarming for 1 out of 2 people who will get Alzheimer’s if they live long enough.  That’s 50 percent.  Research and solutions are musts for the coming generations.

Presently, there are no real answers, but there are some quiet observations.  In watching my friends and reading about Fox, Reagan, Heston and others, their spouses are incredible as they walk with, sit by, and worry about those they love.  Collectively, they have all remained devoted which is not only inspirational, but encouraging to all of us caregivers traveling that same unfamiliar path.  The battle which goes on under The Dementia Umbrella can bring out the worst in people or it can bring out the best.  I don’t know everyone struggling under this covering, but those I see, read about and know are phenomenal human beings. Kudos to these caregivers everywhere.

Originally posted 2010-08-30 02:10:43.

Blessings In Disguise

Ken, Mabel and his daughters Julie and Debbie and daughters-in-law, Mary and Sabina at his 80th birthday 2005

This is, possibly, my last guest post. My mom should be back here writing next week – or soon thereafter.  Debbie Schultz

One of the blessings that came from my turn at caregiving was a chance to become reacquainted with my dad. Obviously he is not the strong, but gentle man, who raised me, helped me through a divorce, get back into school, and proudly watched me graduate from college at the age of 41. This man is definitely different, interesting in his babbling, making sense only in fragments. He was always a great storyteller, but even that aspect is gone from his tangled brain. I see his personality in layers. Some of the facial expressions I remember as a little girl, the mannerisms are still there. When I first arrived here from my home in Utah, he was lying in a hospital bed, mumbling in heavily sedated sleep. He seemed so very old and vulnerable to me. I softly stroked his head and muttered my good byes, thinking that might be the end. But like my mother, he has a tremendous will to live, and two weeks out of the hospital, he is gradually becoming his old pre-accident, self.

The disease is horrifying, taking a person a bit at a time, but in a somewhat detached way, it is also fascinating. What makes a personality? What bits and pieces of one’s history stick, and why do they stick? What jogs memories? Why do some things stand out, while others are forgotten? When asked, he will say he has no children. He confuses me with my mother, but I correct him and tell him that I am his daughter and I love him. I  especially use the technique when I am doing things he doesn’t want done, like showers. Looking in his eyes and telling him seems to calm him. I call it speaking spirit to spirit. And when my daughter goes to move something of mine, he says, “Don’t touch that, it’s my daughter’s.” For a brief moment I am remembered.

He knows he was in an accident. The first few days he was home from the hospital he complained about being stiff and sore. He told me that he hurt because a truck hit him. He knows, when he remembers, that my mother is in the hospital. His love for her, despite the forgetfulness is so evident. Besides often asking where his wife is, there is wistfulness in his wanderings. He sleeps on his side of the bed, waiting for her to come. He asks me if she is working and if so, when will she return home?   Although my voice may sound the same, my reactions are different than hers. He is confused by the similarities.

I am grateful for the opportunity that I have been given to get to know my father all over again. I have more feelings for him as I have served him these past few months. I miss the man that he once was, but I love this frail, funny, shuffling person he has become. Who knows why we go through the things we do in this life? As hateful as this disease is, it often brings out the best in the people that it touches. I have gained a new appreciation for my mother and all she has gone through as she cared for the other members of our family, who were also struck down by Alzheimer’s. The positive side of this negative situation is the opportunity I have been given to serve my father and make some effort to understand what has happened to change him. Without caring for him, there would not have been the reconnection I have felt.  When he is truly gone I will not only mourn the man my father was, I will also mourn who he has become. I am indebted for the chance that I got to know that other man.

Originally posted 2010-04-28 03:39:46.

BENEFITS OF A RED SHIRT

Every time I pick up a current magazine, there is an article claiming some new health tip about Alzheimer’s.  There is just one little catch, the dramatic pull quote from the text of the article always carries one tiny disclaimer:  “may.”  The most recent was all about broccoli and how if you managed to eat enough of it with all of its vitamins and other good stuff, you may be able to avoid the onset of Alzheimer’s.

Personally, I have always liked broccoli and have served it raw, boiled, baked in a casserole and roasted.  During the first Bush administration, it was announced on the evening news the succulent vegetable would not be served at the White House because President Bush (senior) did not care for the green stuff.  At the time, Ken playfully said, “I’m on his side,” pushing away his portion of tiny trees with thick trunks still swimming in a dash of butter, which I had just served.  “No, no,” I replied, pushing everything back in place and adding a couple more spears to his plate.  Knowing he was kidding, I went along with his joke reminding him that we would be eating broccoli a few times a week until he was elected president, then he could select the menu.

Years ago, I wasn’t looking for a food culprit when I received a note from the school nurse advising us that our first grader, Kevin had tested poorly during a hearing exam.  I didn’t know what to think.  Nevertheless, we were advised to see a hearing specialist and immediately made an appointment.

The specialist was a no-nonsense kind of doctor, well-respected and the top in his field.  That was good.   However, his bed-side manner was the pits.  That was not good.

Doctor Grump told us Kevin’s problem was common but rather serious.  His eustachian tube was somehow blocked which formed a vacuum condition causing mucus to be sucked into the middle ear.  If allowed to solidify total deafness would occur.  The good news:  eventually, the boy would outgrow the condition, or as soon as he learned how to pinch his nose and pop his ears several times a day, that too would solve the problem, but left untreated Kevin would  eventually become deaf.

Treatment began immediately.  The ear drums were pierced and tiny tubes inserted breaking the vacuum and releasing the built-up mucus.  The difficult part was keeping water from entering the ear and causing infection and other problems.  We returned bi-weekly for checkups.

As a conscientious mother I tried doing my part by not only supervising bathes to avoid water in the ear, I also thought of ways to cut down on mucus-producing foods such as milk, peanut butter and whatever else I could research, cutting back on that which might be contributing to Kevin’s problem.  When I mentioned what I was doing to the doctor, he scoffed, looked at me with disdain and said, “Perhaps his production of mucus, whether it be too much or too little, is due to the fact that today he is wearing a red shirt.”

Dismissed by his sarcasm, I felt humiliated and insulted, but I said nothing more.  I was young enough to still be awed by tremendously skilled doctors who were supposedly all-knowing, and in my ignorance believed them to be some kind of demigods.  I have long since learned better, and after he learned to pop his ears, the way you do to relieve the pressure from air travel, Kevin’s ears were fine.  Time does bring about change.

It would seem that since President Reagan became a victim to Alzheimer’s, AD has fallen into a more respected category, arriving as one of the “Diseases of the Week,” meaning the medical community is paying it much more attention, and that’s a good thing.  Meanwhile theories abound.  “NEW ALZHEIMER’S BREAKTHROUGH,” touts the announcer for the evening news, “Stay tuned.”  For families and caregivers who, for years,  have watched their loved ones disappear into nothingness, the stunning news offers hope.  However, the announcement is no more than a tease on a slow-news day.  With no significant developments in AD research, the awaited information is nothing new, and hope is once again dashed against the bitterness of disappointment.   No news is actually better than old and rehashed theories.  If you notice, the articles in today’s magazines are high-lighted by wonderful attention getters:  leading captions, great photos or interesting illustrations, but always contain escape words such as “may” or “might.”    It would appear that every form of media is filled with some sort of advice about ways that may help people avoid Alzheimer’s.  The list is endless and covers all sorts of foods and life styles which could be of benefit: avoiding belly fat, being in good physical condition, running, walking, working out, and generally living a near perfect existence.

Living with a man who now has severe Alzheimer’s which began nearly six years ago, I find all of these shots in the dark extremely irritating, even cruel, because guess what?  Ken pretty much fell  into that category of living a good, clean, near-perfect life when it came to being devoted to physical activity, living healthy and eating right, including lots of broccoli; as did his mother and father, his sister and my mother, all of whom still fell victim to AD.

So what does all of this rehashed information bring to us?  Not much, other than a lot of people are writing a lot of speculative and redundant articles about Alzheimer’s disease.  So, theoretically I can, perhaps, offer some speculative advice of my own by taking  a tip from Dr.  Grump.  Perhaps people may avoid falling victim to Alzheimer’s by wearing a red shirt —  or a purple dress or a pin-stripped suit — or whatever.  It makes about as much sense as eating lots of broccoli.

Originally posted 2009-11-19 08:19:39.

PROBLEMS BIG AND SMALL

The ghosts, goblins, fairy princesses and super powers have come and gone from our house, leaving no tricks, their bags bulging with treats, meaning another Halloween has passed.  I enjoy the sporadic parade of kids in masquerade. (I don’t even mind the older set as long as the candy holds out, their voices already hitting the low notes of “Trick or Treat,” who come later in the evening).  In the past so did Ken.  This year he made no recognition of the holiday when I placed pumpkins on the porch, an immense spider clinging to an equally over-sized web hanging from the roof, and a friendly ghost stuck in my juniper bush which was sprinkled with candy-corn lights.  The house looked festive and inviting and I raced to the door with my caldron of candy at the first ring.

I could see the groups of small fry in costumes were confusing to Ken, who managed to get to the door in front of me offering out a jumbled scolding to a mom and dad with little ones.  I pushed in next to him explaining “Alzheimer’s,” adding, “You didn’t get your candy,” as they all scurried down the walk.  The parents, looking a bit unsettled, shouted over their shoulder, “That’s okay.”   I moved my chair next to the door so it wouldn’t happen again.  I strive to be as “normal” as possible, but as Alzheimer’s gets worse, the problems get bigger and more difficult to manage.

Soon, Granddaughter, Jessica, 10, arrived looking extraordinarily beautiful, glittering petals covering the skirt of her fairy princess costume, a jeweled snood for her hair and wings with which to fly, everything stitched and put together by Sabina, her talented mom.  Jessica, while enjoying the door bell ringing part almost likes being the hostess more than the visitor, taking over my duties handing out the candy while her parents chatted with me and Ken, who soon relaxed, his son’s presence and friendly banter calming him.

As I survey the growing problems as caregiver to my husband and his Alzheimer’s, and all the others who share our experience, I also think of the little ones out on Halloween night with plastic pumpkins and decorated bags carried to collect their evening’s loot.   As young as they are they too have problems.  For them their problems loom just as large as our problems are to us, which reminds me of my seven-year-old friend, Robert.

While visiting grandparents in Northern California Robert was allowed to pick out a pumpkin at a nearby pumpkin farm.  Selecting it from the vine, he helped load it into a wheel barrel, and then into the car.  Aunt Chrissy laughed and said that she would buy the 95 pound pumpkin for his birthday.

At home, the gift sat stately and firm on the front porch until some thoughtless, mean-spirited thieves took it while Robert was at school and his mother, Malena, away from the house.  Coming home to an empty porch Robert was inconsolable.  He sobbed until Malena thought his heart would break.  Tearfully he asked his sympathetic mom, “What if the thieves are already making pumpkin pies?”  How could a first grader understand the cruel ways of the world, or why anyone would take his special gift.  The theft of his Halloween-birthday pumpkin was, to Robert, the biggest problem he had ever encountered, and a problem he was unable to solve.  Our story, however, has a happy ending when a family friend, who is also a police detective talked with Robert, assuring him the “force” would see that his pumpkin was found and returned.  Meanwhile, our detective located an equally large pumpkin in an equally busy pumpkin patch and, back in full police uniform, delivered it to Robert’s porch.

Problems and adversity are a necessary part of our growth in life and they have no age preference, whether they be problems dealing with dirty, rotten scoundrels, age and illness, business worries, problems of the heart, families in crisis, or young marrieds’ problems making their budget stretch to cover the mortgage.   Like pain, no one can measure the severity of another’s misery, nor can anyone calculate whether a problem is big or small — only he to whom the problem belongs is allowed to make that distinction.  One thing, however, is for sure:   no matter what size the behemoth which might lumber into our lives, the enormity of it is always lessened by love, concern and at times action, when needed, from those who care: sometimes a stranger, family members, friends or a good and wonderfully kind police detective.

Originally posted 2009-11-02 07:39:37.

HE NEEDS TO BE IN A HOME

“Have you thought about looking into a care facility for Ken?” asked my neighbor.  “Of course,” I answered, closing the issue and moving on to another subject.  What I wanted to say was, “Having to place my husband in a full-care facility hangs over my head  like an enormous lead weight every single day of my life, and I wait constantly for it to drop.”  Because we are friends I didn’t feel she had overstepped her bounds by asking me, after all we have known one another since our children were young.  But I did feel the intrusion when she called a family member and told them Ken belonged in a home.   This being my fourth trip (and the most difficult)  down Lost Memory Lane, there is one thing I know for certain: no matter how demented their state of mind, people with AD and other dementia-related illnesses are happiest in their own home, surrounded by loved ones, and when and if the time comes for placement, the decision will be made by family, doctors and the guiding hand of clergy.   My most fervent prayer is that the Lord will call him home before I have to make that placement.  Keeping Ken with me for as long as possible is my goal.

If “as long as possible” sounds vague, it’s probably because it is.  I have certain established criteria which will help me and our family reach that awful decision:  if Ken becomes violent, if he can no longer care for his personal needs, or if he becomes a danger to himself or others.  Those remain uppermost in my mind, but I know other problems may arise of which I am presently unaware. I will cross those bridges if and when I come to them.  I also know removing him from his home will be the most difficult thing I will ever do.  “But you would have so much more freedom,” people have said.  “To do what?” I ask.  Admittedly, caring for any loved one who is terminally ill is difficult, wrenching, exhausting and depressing, but would it be less painful to visit him or her in a care facility only to have them weep at your leaving and beg to go with you.  There are no easy answers and there is no easy decision, so it is best for those who mean so well not to become part of the problem.

I find the further down the AD staircase Ken travels the more changes take place: changes in his ability to understand, his awareness, comprehension, personal care, his physical abilities and even his willingness to cooperate which I know is normal for the disease.  All of these changes and more will be factors in determining when and if he has to placed in a home.   However, the fascinating part of this insane journey (if I can  use the word fascinating), at least with Ken, is this fact:  his trips yoyo up and down.  There are days when his decent seems endless; speaking with little sentence structure, groping for needed words, unable to take simple directions, more anger and frustration than usual, difficulty in making the simplest of decisions and general annoyance with me the majority of time.   After a few days of this sudden and bazaar behavior, I tell myself, “Tomorrow, I’ll call the family, and we’ll talk.”  But when tomorrow comes, he’s better.

The medical community has said that once memory is gone, there is no recovery, but I wonder about that.  As I have watched him regress over the past six years, the decline is very definitely dramatic.  There is no comparing the Ken of 2003 and the Ken now.  I’ve watched and listened to him drop through the years, lose memories and his age year after year: forgetting his career, me, his children, and then dwelling for a time in the Navy, dropping down again to a time when he insisted he needed his pajamas before he could get ready for bed.  During those latter times I call him “Buddy,” the nickname his parents gave him.  Furthermore, when he’s Buddy (who is about 12)  he wonders why he hasn’t seen his mother and father, and asks about his sister, Loretta.   Loretta, I tell him, has her own home, but telling him his parents are deceased is unacceptable to him, so I tell Buddy they are on vacation.  Being just a boy Buddy tells me he is not married, never has been married, has no children — only a sister and his mother and father.  Another personality in the mix and to whom I refer is Mr. Hyde, who also owns our house, but is older and married, but not to me.

Other times, from out of nowhere, Ken will look at me and wonder, “Are you my wife?”  I assure him that I am adding, “Your wife needs a hug.”  Eagerly he obliges, and in our embrace we fit into each other’s arms as if these wretched years have never been.  Feeling the comfort he remarks, “Oh, this feels so good,” and then he rubs my back as he always did before letting me go.  Ken invites me to sit with him on the couch so we can watch TV together with him asking, “Are you okay?” and he reaches for my hand.  My husband remains for several minutes before that mysterious fog wipes away the memory and he becomes one of the other personalities, dismissing me as some annoying intruder.  I’m grateful for the interlude.

Physically, Ken is in very good condition, a little on the skinny side.   How long the two of us will ride this crazy roller coaster called Alzheimer’s is an unknown factor, but we will continue riding it together until — and if — there comes a time for our ride to stop.  Meanwhile, I am the one, with my chosen council to councel who will determine when a change needs to be made.

Originally posted 2009-10-28 08:06:27.

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