CHANGES TO WATCH FOR
August 19, 2016 – We are never the same today as we were yesterday, nor is anyone else. However, we all have times in our life when we make subtle changes. Usually changes mean nothing, or a temporary whim or experience will cause a reflective change in personality. This doesn’t necessarily indicate anything serious, but it could mean dementia, which could include any of the dementia diseases such as Alzheimer’s which is the most common of the dementias.
MY EXPERIENCE IS WITH ALZHEIMER’S
As my readers know my entire blog is made up of my experiences with various members of our two families and with my husband, Ken, who first began showing signs of AD in the mid and late 90s. His release from the torment of AD came in October of 2014. These subtle changes may not be noticed by others, but because of the close relationship of husband and wife the mate often spots the irregular change long before any changes become obvious to others – even their children.
SAYING HURTFUL THINGS TO OTHERS
Ken was known for his friendly personality, his affability and his gregarious nature. He loved people, especially family. That was why I was so shocked when my sister, Janet, and her husband, Douglas, paid us a visit. Douglas had been diagnosed with cancer and wouldn’t live another year. As we sat together in our living room Douglas mentioned that he felt cold. In his weakened condition he became sensitive to lower temperatures wherever he was. I moved toward the thermostat to click it up a notch. Without thinking of his ill brother-in-law Ken said in a loud and rather brisk manner, “I don’t understand how anyone could be cold, I’ve got the temperature turned up to 68 degrees. If anyone is cold, there must be something wrong with them.”
I felt horrified that my kind and caring husband would be so rude to this dear man who was, basically, dying. I stepped forward and pushed the thermostat up a few degrees even though for Ken it would be too warm, but I reasoned it would only be temporary. Meanwhile I got a blanket for Douglas.
Falling and loss of balance could be an indication of an approaching dementia. I didn’t notice that he fell often, but I did notice that he became clumsy, stumbling over his feet every so often. What I did notice, even more, was that if Ken filled his arms with too may objects he would drop some, if not all in an effort to keep them together, especially if he reached out to open a door or to switch on a light with the other hand. He did that one night as we were returning from a pot-luck dinner. The bowl, the salad dressing, tongs all went flying as he reached to switch on the light.
WHAT’S SO FUNNY
Ken had a contagious laugh and was always one to enjoy a good joke. As Alzheimer’s chisels away at the victim’s brain humor often goes by the wayside. His mind lost the ability to grasp the humor of a Double Entandre. In another direction, my mother always taught her girls that sarcasm was the poorest form of humor. Yet, in today’s society, sarcasm has reached great heights in the comedy world and a quick mind which uses the form is considered very intelligent even though the form can be biting or insulting for the individual to whom it is directed. Nevertheless, it is extremely popular within the populace. Those living their lives in a demented state usually miss these subtle forms of humor.
AGGRESSION AND “THIS IS MINE”
We had been visiting my sister once again, after Douglas had passed. Arriving at their cabin on the lake, a young man had been assigned to hand out leaflets concerning the coming homeowner’s meeting. Ken took the paper. Janet said, “I’ll take that Ken, it’s for me,” and reached out her hand. “It’s mine,” he glowered, “the boy gave it to me.” “But this is my house,” my sister retaliated, “it’s meant for me.” He became enraged with her reminding her that the paper was given to him.
Not having experience with a dementia patient my sister began to argue. In his anger I thought for a moment he might hit her. I redirected him to a chair on the deck and he calmed down giving me the paper, and then we went for a walk. His reaction was so unlike the man I had married.
Ken’s eyes often danced as he talked with people, yet I noticed, especially as the disease progressed, that instead of good eye movement, he eyes became blank, not looking at anything, just starring off into space.
EXPLORING THE WORLD LIKE A CHILD
We see it with babies as soon as they begin to crawl, and even before. Anything on the floor is a curiosity to be investigated. And when the object is captured in a tiny hand it immediately goes into his/her mouth. Puppies are the same and so are some people suffering from a dementia-related disease. Activities were next to impossible to introduce to Ken as everything I offered went into his mouth. Large puzzle pieces, crayons, pencils and whatever I offered he tried to eat. He once grabbed a handful of screws while my handyman tried to repair a caster on a small table.
My mother, my patient a few years before Ken became ill, tried to scrape the flowers off her dinner plate, and then chewed her flowered paper napkin in an effort to remove the printed petunias on the paper. When she could get a pencil she would pick up a book and begin correcting the grammar, punctuation or syntax on the page she was reading. She did that until she could no longer read.
UNDERSTANDING FROM ALL CONCERNED.
Apparently, that’s one of the most important keys in being a caregiver. When you have an understanding of the disease, and are able to grasp the full ramifications of what is happening to the victim, then the support system can be more prepared to cope with all that’s going on and all that the future has in store with this painful experience. Read, learn. apply and be “there” for your patient. Remember, they can’t help what is happening to them, but “we” who are “there” can help them.
A BEST FRIEND FOR A LIFETIME?
August 13, 2016 – We tend to think that way, especially women, when friends have been friends for years, actually decades, but people are people and everyone is different. Physically, we’re probably made of the same stuff, but when it comes to emotions we are definitely different. My friend and I enjoyed so much in common: living in the suburbs, children about the same age, married about the same number of years. With former farmlands converted to housing developments the returning WWII veterans and their spouses quickly snapped up the sprawling quick-fix to a severe housing shortage. Throughout America, numerous tracts of cookie-cutter houses sprang up over the countryside as if the former farmer had planted and fertilized an expansive bumper crop of single-family homes. Following the end of the war, many of us moved into our new abode on the same day or within a week or so from completion date. With so much in common, it was easy to be friendly and get acquainted before all the paint was even dry.
SPATS AND DISAGREEMENTS
Early on with our neighbors, I noticed a little something with my new best friend (I’ll call her Beatrice) that was a little out of sync (at least with me). If we had a little spat, as is often the case when families live in such a condensed environment. I believe a similar scene repeated itself many times during the next half century in every neighborhood throughout our country.
Beatrice was never one who apologized when she needed to step forward and say, “I’m sorry.” So it was always me who stepped forward, rang her bell usually holding a baby on my hip asking, “May we come in?” She welcomed us. and we picked up where we left off and just went on with our similar lives until a small break happened again which was resolved within a few weeks using the same pattern
FAST FORWARD SEVERAL DECADES
As neighbors, we were all shocked and saddened by the death of her husband Jack before he even reached the age of 50. Friends couldn’t do enough to help her adjust and begin a new life without him. The men jumped in to finish any project Jack had been working on, doing more and going beyond what may have been on Jack’s list while the women were at her beck and call. There was nothing we wouldn’t do for Beatrice. We were like family.
Life remained relatively good for a long while. Our children all grew up, went to college, or not, got married, or not. And then tragedy struck again. The daughter of one neighbor died suddenly and so unexpectedly, her demise leaving all of us filled with compassion and concern wondering about the whys and adversities of life that we all experience, yet manage to live through. I spent an afternoon with Constance, the young woman’s mother—once she was settled and had accepted her loss. The following week I asked Beatrice if she had gone to visit Constance? She had not. I suggested that it just wouldn’t right if she didn’t and she should force herself to pay the grieving mother a visit even if she felt uncomfortable. Reluctantly, Bernice finally did.
SKILLS FOR LIVING
We should all have them, or at least some. Somewhere in our life, we all need to learn not only how to show sympathy, how to be empathetic, show compassion, share a hug or two when appropriate, read up on the right things to say, or not to say, during a time of loss and learn to listen. There are times when most folks need a listening ear and a soft shoulder where they can just cry. Not forever, but for a little while. There are some, however, who just cannot, no matter how hard they try, help carry other folks’ burdens. I do believe my friend Beatrice is one of them.
NO SOFT SHOULDER, JUST SIGHS AND EYE ROLLS.
It was when my husband Ken began showing obvious signs of Alzheimer’s that I paid a few visits to my friend of 60-some years that I noticed her wandering gaze when I mentioned some of the things Ken had done because of his AD. I even caught a few eye rolls. It didn’t take me long to get the message that she just didn’t want me to talk about my husband or his devastating disease. Asking, “How’s Ken was strictly a formality?” She really didn’t want to know. Nor did she offer a hug or an invitation for me to come over anytime and the assurance that she was going to be “there” for me during this time of adversity.
Furthermore, other neighbors had mentioned to me that she was being more than critical about the need for more professional care that she believed he would receive in a all-out care facility. Apparently, she felt the care which I was providing for this truly mild-mannered man who was no danger to them or to himself was not enough. “He should be in a home,” she complained to our neighborhood community.
I know and understand that we all have our foibles and weak places in our personalities. She isn’t me, and I’m not her and that’s all right. Even if she wasn’t “there” for me with a soft shoulder, she is still my friend and I have forgiven her her apparent inability for empathy. Not everyone is able to “step up to the plate.” I have noticed that her health is beginning to fail, and she has a touch of dementia. I visited with her recently and have told her that if her son isn’t available, I’ll be “there” for her. “Just give me a call.” After all is said and done, we have been friends forever and still are.
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A FOND MEMORY OF ANOTHER TIME
August 5, 2016 – Memory is a tricky thing. “They” tell us that the past is gone, the future isn’t here, and today is where it is: reality – live in the moment. That’s why it’s called the “present.” I couldn’t agree more, but there is something about remembering the past that brings comfort when comfort is needed and welcomed. The anonymous one also says that the past may be pleasant, but you wouldn’t want to live there. I also agree with that but the gift of memory, a now-and-then visit soothes a saddened and lonely heart with a balm of happiness if just for a moment. Furthermore, memories are sometimes triggered by something so simple as a piece of fruit.
TAG, YOU’RE IT
July 29, 2016 – In the yin and yang of Alzheimer’s the question of who becomes a victim hasn’t been determined. When it’s a cold or the flu, it’s probably contagious. Not so with Alzheimer’s or other dementia diseases. Just because an afflicted victim sneezes doesn’t mean a visitor will catch it. It has been determined that it’s a genetic disease. Just like blue eyes, it’s something you may, or may not inherit. As our primary care doctor said when I told him of Ken’s symptoms and asked if he would get the same disease his parents had he said, “When conception happens, the fetus has a vast gene pool from which to draw. The answer is maybe yes, and maybe no.” So without testing, there is no definitive answer.
There is no guarantee in either direction. For me, my mother developed it as she grew older. Not just some cognitive loss, but full-blown Alzheimer’s. The jury is still out for me and my two sisters. So far, so good. We are remembering that our father was of clear mind until he passed to the other side. Perhaps we all got an overload of his genes, which would be fine with us, and if we passed those stronger genes on to our children, that would even be better.
MEANWHILE THE YIN AND YANG CONTINUES
The yin and yang of the disease continues in how it affects people. Ken and I enjoyed the company of a couple who became two of our dearest friends. The wife is becoming confused and has some mild cognitive loss, and in all probability it will develop into A.D., much to the shattering of her family. During one of our conversations, she had mentioned early on in our friendship that her mother had been afflicted with Alzheimer’s. This was about the time that Ken was slipping away into the dungeon of no return. We thought no more about it, but Carol did mention a sweet remembrance during one of those fleeting moments of clarity when her mom looked at her and said, “Carol, I love you.” The moment was long enough for the daughter to respond with her comforting response, “I love you too, mom.” I don’t recall my friend mentioning other times of clarity where she and her mom connected, but that one moment was a treasure close to her heart.
HEART ACHES AND BLESSINGS
My heart aches as I see this scene begin to appear in the lives of these dear friends. Visiting them is often like seeing my caregiving years once again only with the roles reversed. Bill, the husband, is her caregiver. In his sweet devoted face I can see the pain and sadness as he watches his best friend, his special loved one slip away into the lost world of Alzheimer’s. I just hope that she has moments of clarity when she can tell her family how much she loves them. Those are the blessings to treasure till we all meet again. The love of family and couples is the bottom line in the yin and yang of Alzheimer’s.
DO MEDICATIONS START OVER 50 OR IS IT 70?
I often think medications for most people are just something that occurs when people get older. I’m not sure of the beginning date. Thinking back I do recall how surprised I was to hear my doctor tell me that my blood pressure was a little on the high side and that I would have to start taking some medications for it. At the time somewhere past 60, I believed it was something that a few pills would correct, then I could relax until I really needed medications for one thing or another. The good doctor informed me otherwise. With hypertension the patient really needed to take his/her medicine possibly for the rest of one’s life.
I’m not sure whether Ken being a runner, managing his health by eating right and keeping in shape, but his blood pressure was never an issue. But then his illness was Alzheimer’s not hypertension.
WHAT COMES NEXT?
July 15, 2016 – There comes a time in everyone’s life when help is needed – not just during a period of caregiving – but after the caregiving is over, the caregiver is often alone – or almost alone. Whether he or she realizes that, very often a large amount of time, even years, have disappeared. Following the demise of the cared-for loved one, the spouse left behind begins to realize that during the long period of caregiving, the loving service has taken an enormous bite out of his/her life.
BE GRATEFUL FOR WHAT IS
Not only has time and age crept up on the unsuspecting former caregiver, but strength and energy in addition to the loss of muscle mass have left the once-energetic caregiver in need of help. A while ago I wrote about having my kitchen back so that I could arrange it for my needs. I’ve also found that if there are no volunteers, then you must ask for the needed help.
HELP IS THERE, BUT IS IT ALWAYS WANTED?
There’s more to a clean and organized kitchen than just the cutlery drawers. Recently my daughter Debbie spent some time with me. She and her daughter Kristina, who lives with me and has for a few years, thought it would be a good idea to clean out and arrange my pantry which has needed to be done for some time. Cleaning out my cutlery drawer was a small duty I had done in one day. I didn’t have much left in the department of energy to clean out the pantry.
The disadvantage of their combined efforts was that it was rearranged according to how it would suit Debbie. With all things accomplished, and they did a fine job, I found it difficult to find what I needed in the neat, organized storage area. I am so grateful for their effort. I do, however, have to search for wanted items. How can I make oatmeal cookies when I couldn’t find the oatmeal?
Ken’s former caregivers prepared oatmeal each morning for Ken, and now I couldn’t find it. So, in my effort to make up a batch of cookie dough I moved items around: from here to there, and often back again. In doing, I found myself putting most of the contents of the pantry back in the approximate area where they had always been.
I do appreciate these two women for their caring effort to do a job that needed to be done – and it is done. Then because the pantry was already cleaned, it was easy for me to readjust the canned goods, the boxed crackers, and the packaged bags of beans and pastas back to where I could find them.
So in my appreciation for their hard work, I can sincerely say, “thank you” dear ones. Now that the hard work is done I can keep it organized.
Meanwhile, I’ll look around to see what else needs to be cleaned and organized. It’s all a part of downsizing – something that all seniors should be doing. And it goes along with accepting help, even if you don’t think you need it. And when it’s needed, don’t be shy about asking.
DOGS AND CATS ARE ANOTHER SOURCES FOR HUGS
July 9, 2016 – Our Auntie Mary lived her last years in an Alzheimer’s care facility which was several years before my husband Ken showed any signs of the dreaded disease. I’m not really sure that Mary was ever diagnosed as having AD, but she did suffer from dementia and confusion.
ANIMALS ON COMPASSION DUTY
We’ve all read about service dogs and military dogs and the good they do continually with just a little training. Well, there was a dog on duty at the facility where Auntie Mary lived. I’m not sure of his breed, but he looked like an Alaskan husky with his full, bouncing collar of fur. I doubt I’ve ever seen a dog so devoted to his call to duty in making sure the residents had a visit. He would walk proudly from one room into another, seek out the resident and place himself within reach for a pat on the head, a good fur rub, or just a quiet visit. Visiting, as he did, he often greeted some of the visitors with the same show of affection and attention.
It has been said by the medical community that just petting an animal can lower one’s blood pressure by several points.
PET HUGS FOR THE ASKING
I viewed a short video on FB the other day of a dog who actually put his front legs with paws extended around a young boy’s neck. The boy hugged him back. It was truly an embrace and adorable to watch.
Ken and I were always animal people, and our children are as well. Daughter Julie and her ;husband Tim have adopted several dogs and cats. Fortunately the three very small dogs get along well with their border collie. And affection, they can’t show or get enough, spending as much time as possible on laps of “mom and dad” human or willing guests. You can’t help but feel worries melt away when holding a tiny furry life on your lap. Rosie, their resident gray tabby cat tolerates her K-9 buddies with no problems.
A family just isn’t a family without a dog. Debbie and Mark adopted a pit bull puppy that had been dumped on their street. Such a sweet little thing. They named her Buttercup, and she was as gentle as a lamb. All three sons have multiple dogs as well. Good thing their spouses are animal lovers.
FELINES ARE LOVING AS WELL
Gouda, our cat, verges on nuisance, especially when I’m at the computer. She wants to just curl up on my hands and take a nap. That’s when I slide her down and cuddle her on my lap for as long as she will stay. I am greeted in the morning as she nuzzles my face with her face. Then if I’m not fast enough, she reaches out one paw to my cheek and pats it gently keeping her claws to herself so I don’t get scratched. She is definitely a cuddle cat and brings comfort and joy to me and others. I’m grateful for her and our dog Buddy for their affection and presence in my life. When I don’t have a human near for a hug, I know that I can always depend on one of the dogs or cats in our house for a needed show of affection.
LIFE GOES ON NO MATTER THE STAGE OF ALZHEIMER’S
July 1, 2016 – Sleep seems to be an ever-time- consuming activity in the last stages of Alzheimer’s. At least such was the case with my husband Ken. This is an open letter to him about all that he missed in our family, while in the process of losing his life to Alzheimer’s. During these last stages of AD, Ken no longer communicated in any form. If he was in discomfort, he was unable to verbalize that discomfort. Nor could he verbalize whether he felt too warm or too cold, hungry or thirsty. He just looked into space and reflected nothing. Meanwhile, life went on.
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A THERAPY SESSION OF HUGS
June 25, 2016 – If an apple a day keeps the doctor away, then how about a few hugs, and what do they do? We all know that hugs are a pleasant way to express caring for another person, with both participants benefiting: the hugger and the hugee. Hugs are known to release oxytocin, known as the snuggle or love hormone. The hormone is secreted by the posterior lobe of the pituitary gland when people snuggle or bond socially. Even playing with your dog can give you a surge of this feel-good hormone.
Ken and I were huggers from the very beginning of our courting days and all through our marriage. If someone asked me what I miss most about him, now that Alzheimer’s has sent his spirit to another dimension, I would say, “our hugs.”
And lucky us, we hugged for no particular reason. Often just because we were there; standing around could bring on a hug, and one of the best parts was that we fit so well. With his arms around my shoulders and my arms around his back we were like a jig-saw puzzle. We fit perfectly and our hearts touched. We would hold for a minute, exchange a kiss or two and he would say, “This feels so good.” “Sure does” I always answered, and then, following another quick hug, we returned to our tasks at hand.
FROM THE EXPERTS
According to a study published by the journal Hormones and Behavior, other secretions are also noted. Serotonin, a chemical found in the human body also contributes to feelings of happiness when an individual receives even a quick hug. while lack of he chemical can lead to depression.
There is an expression from Virginia Satir, graduate from University of Wisconsin – Madison, and holding a number of honorary doctorials, she has written numerous books on the world’s social problems. As a highly respected family therapist she says, “We need four hugs a day for survival, eight for maintenance and twelve for growth.” While doing research and writing, she asked her daughter, “How many hugs a day do you like?” In response the child said, “I’m not going to tell you how many I like, but it’s a lot more than eight.”
Through studies, laughter and hugging therapy have been proven to heal sickness, disease, relieve loneliness, depression, anxiety and stress. Deep hugs are best. Hug that person so that your hearts meet and let the oxytocin flow.
A Father’s Day Guest Post From My Daughter
June 19, 2016 In honor of Father’s Day I am sharing the talk my daughter gave at her father’s funeral, almost two years ago.
I won’t say rest in peace, not as it applies to my father.My father has been resting for the last 14 years. I don’t believe he wants to rest anymore. Before Alzheimer’s, my father was never a restful man. He was always doing something: working, helping, constructing, hiking, running, volunteering, organizing, leading, and pushing others to be better and the best they can be. Even when he stopped to watch sports on television, he played along, shadow boxing early fights and making every sports play right along with the actual athlete on the screen. An afternoon of watching TV left him exhausted.
I think right now, he is making up for the lost time he couldn’t be busy, at least as busy as he was here on earth, before he was stopped by Alzheimer’s. He is visiting and catching up with all the people who went before him. He is filling their ears with good stories of his life on earth and sharing a hearty belly laugh with his antics here. He leaves a long legacy of those whose lives he touched. From scouting, where he pushed his boys to learn from experience and struggle, to Little League, where they learned that winning wasn’t as important as trying your hardest and taking responsibility for yourself. In Dad’s Club he showed, by example that men were as important in the education of their children as the mom’s who were already there, helping in school. And that the parent part of PTA meant just that, parents, both mom and dad.
One of the most important things that my dad did was listen to the missionaries from the LDS Church. Finally, after 27 years of listening, my father was touched by the right message and decided the time was right to accept the Gospel and make the commitment of baptism. While on that road, he learned the plan of salvation and the importance of a temple sealing of their marriage which was done the following year after 29 years on their wedding anniversary. As a member, his commitment intensified. He took his covenants seriously and served with more fervor, continuing to exemplify the teachings of Christ by the way he treated everyone, whether in or out of the church.
When he got Alzheimer’s , his core values and beliefs didn’t change. He may have struggled for words and memories, he may have let himself be overcome by the natural man, and be frustrated by his lack of memory, lashing out to loved ones and caregivers, but beneath that horrible disease, was the kind and gentle person he really was. In times of clarity, he remembered his manners, apologized , said please and thank you for the care he was getting, expressed concern and tried to be as helpful as he could, despite the indignities the disease forced on him.
I am grateful for the legacy he left, to the many people whose lives he touched in one way or another. I am grateful for the Gospel of Jesus Christ and the knowledge that I have that this life is just a step in the eternal view of things; that my father will be there waiting for his bride and to see the rest of his family join him. My father was a shining example that life is good and meant to be lived. He lived it well.