COMING FROM OUT OF NEWHERE
As a person with severe Alzhiemer’s spends more and more time inactive or in bed, bed sores or pressure sores, which is what they actually are, become a problem. They occur when the skin begins to discolor due to lack of blood flow. As they progress, the patient loses layers of skin, exposing tissue under the skin. It is an ulcerated sore that becomes very painful and enlarges. Sometimes they come so quickly it’s an unwelcome surprise. My first experience was with my mom before her passing from Alzheimer’s.
EATING, ALWAYS A PLEASURE
September 29, 2014 – Eating has always been one of Ken’s delights. He was one of those men who could put on 30 lbs., have butter-ball cheeks, and then, within his designated period of time, easily take the weight off. When we met he weighed under 170 lbs., which put him on the skinny side. He was working at the Santa Fe train depot as a telegrapher and hadn’t learned how to budget his money very well. Being paid only once a month, he and his roommate lived the last week or so near the end of the month on not much more than oatmeal three times a day. Boring as his diet had been he still appreciates a bowl of hot-cooked oatmeal.
A CRAZE BRINGS ATTENTION TO THE DEMENTIA UMBRELLA
September 12, 2014 — One of the latest ways to bring attention to a disease is the Ice Bucket Challenge. People either give a monetary donation, have ice cold water with ice cubes dumped on them, or do both. The recipient of this gesture being research, for ALS or Lou Gehrig’s disease, nick-named after a well-known ball player of yesteryear. The challenge, especially when done by celebrities, is meant to brings attention to this life-destroying diseases. Amyotophic Lateral Sclerosis attacks the nervous system, then the brain of its victims and is always terminal. Like Alzheimer’s, ALS is one of many numerous diseases classified under the dementia umbrella.
THEY ALL NEED A CURE
Those in our family who took the Ice Bucket Challenge dedicated their donation to Alzheimer’s remembering their grandfather, my husband Ken. There was no paparazzi standing by when great grandson Joaquin and his friend Gavin, both of Brentwood were dumped with a bucket of ice-cold water. Gavin, by the way made his donation to fight breast cancer. There were no photos in “People” magazine, and no frenzied fans shouting their adoration. Their unselfish contribution was done not because supporting and donating to Alzheimer’s disease and breast cancer is better than donating to ALS, but because all of these horrible illnesses need the attention and the research to find answers: how and why they attack the brain or body, what causes these diseases and how can they get cured?
Presently, questions about those brain destroying diseases have little or no answers, but the question that was brought to the attention of readers of the article about the “Ice Bucket Challenge for ALS Attention” from one victim’s wife was, “What good is this doing other than bringing more attention to celebrities who hardly need any more publicity. “Wouldn’t it be better,” she asked, “if they simply and quietly donated the sum of money instead of using one of these painful death sentences as a photo op.” I agree, to a point, but for me there can’t be too much attention brought to any of these fatal ailments where the final goal would be a return to good health and saving the life of a loved one. She went on to explain how it felt as the wife of an of ALS Victim.
LIVING WITH THE VICTIM
While I can agree and understand her feelings and frustration I am one, as I am certain she is also, who would like to find answers and cures. If I believed that pushing a peanut down Main Street with my nose would aid in finding a cure I would be willing to give it my best shot. I have been that way since the beginning of Ken’s illness. I’ve tried anything and just about everything including garlic, ginger, double helpings of broccoli, coconut oil, curry, then turmeric and even a “happy” cookie from a hippie-type relative. If I thought for even a minute that a good serving of bat guano would help my husband return to the man he was, or break through the mystery maze of brain disease, I would stir up an ample helping, add butter. a little salt and hold out a spoon coaxing, “Open wide.”
I’ve noticed that even suggestions for holistic treatments are beginning to grow dim as the years of study, research and experiments on lab rats is slowing. There was a post where I read that because of the lack of any real marked successes, some researchers were concluding that Alzheimer’s disease was without treatment or cure. My heart aches for the generations to come and the fear and dread that comes to children of victims anticipating the possibilities of an unknown future.
Every caregiver suffers as well as the victim. It doesn’t matter who the loved one is: mother, father, sister, in-laws, aunts, uncles. children or husbands/wives. However, the caregiving spouse, including me, is in a never-ending state of mourning. Depression and the constant feeling of foreboding and lonesomeness, all fought valiantly with every waking fiber within me. These feelings follow me around like a black cloud reminding me constantly that the man who sleeps in a hospital bed in our family room is dying. Whether it will take another year, another five or longer, he is still slowly dying.
My feelings of lonesomeness aren’t because there are no friends or family nearby. My home almost rumbles with people. I miss sharing with my husband. I miss the companionship: with him not being available to hear my complaints or good news. I miss going to movies with him, s lunch or dinner sate, even shopping gets lonely. I miss him next to me in our king-size bed. But I do believe that what I miss most are the hugs and kisses — especially the bear hugs and the joy that comes from loving this man.
Sorrow is masked with cheery hellos, forced smiles and an “I’m fine attitude.” There’s no sense in spreading the doom and gloom to others. People have their own worries and problems. The caregiving spouse must gird up his/her loins and go on mainly because there isn’t any other place to go except “on.” We just need to keep in touch and bolster up one another (Cheers for social media and support groups.)
The Ice Bucket Challenge has brought attention and money for ALS, but the greatest challenge for all those who find themselves directly involved with any of the other diseases under the dementia umbrella, is maintaining a positive attitude and greeting each day in a salute to life. Once in a while Ken manages to say something that makes sense no matter how unwittingly. Today he said with absolute clarity, “It just isn’t fair.”All of the victims and caregivers within earshout will totally agree.
DIFFERENCES BETWEEN BRAIN DAMAGE AND BRAIN DISEASE
September 6, 2014 – Brain damage occurs from trauma or injury to the brain. A person with Alzheimer’s has a diseased brain. Some may not understand the difference, but the differnece is huge. With the bodies remarkable healing qualities an injured brain can, at times, relearn information in another area. In the Alzheimer’s diseased brain, that is never the case.
RELEARNING BRINGS HOPE FOR BRAIN DAMAGE
Hit by a car when he was young, the son of one of my friends received numerous injuries including a concussion and major trauma to his head. From an X-ray the doctors pointed out to the worried parents that there appeared to be a small area in the boy’s brain which was badly damaged and would probably not function again. Reassurance came quickly when the neurologists explained how remarkable the brain is. If some of the information the 4-year-old had learned was lost, he could relearn it with another part of his brain. He is now a very successful, adult, his childhood accident, leaving no apparent long term effects. Continue reading
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PARENTAL CAREGIVING, THAT’S NOT ALZHEIMER’S
August 29, 2014 – Though caring for someone with Alzheimer’s is difficult, parental caregiving has got to be even tougher. What if caregiving started at birth and lasted until the length of that child’s life?As a caregiving spouse, I do believe it is the most exhausting, painful, devoted, heartfelt, involved, dedicated and most difficult job (calling) in the entire world. As a caregiver I also know of those moments of joy that are a part of caring for a person with either a physical, emotional or mental disability. What kind of people lovingly take on that responsibilty, knowing that when they are finished, it is because their child has probably left this earthly life?
WE NEVER KNOW WHAT OTHERS ARE GOING THROUGH
My experience by comparison to some others is very limited. Caring for Ken’s parents, my mother and now Ken has put me through the wringer of life for a good portion of my many years. However, I have never experienced caring for a disabled child who has lived a lifetime locked in a crippled body, born with a severe case of cerebral palsy. I’ll call him Mike. He would have liked that. It made him one of the guys even though he had matured and grown in age to an adult male of 50.
Family members have been his caregivers. Watched over by siblings, but cared for by Mom and Dad. I’ll leave it at that – no names: just Mom and Dad.
SPECIAL GRANDCHILDREN FOR SPECIAL PEOPLE
I became aware of Mike through my grandchildren. In our area there is a program sponsored by our local recreation department where activities, games and outings are provided for adults with disabilities. For nearly 40 years these grandchildren have been involved with the program as teachers, assistants, clean-up crews, crafters and hands-on caregivers. The older grandchildren started as a summer job, bringing their siblings to work as volunteers. After gaining experience, when they turned 16, they were hired as employees to do what they had been doing. For many it turned into a regular job even after the summer season had ended. Remembering when it all began with grandson Michael, then Sean, Alan, Liz, Katie and now Kristina I was pleased with these grandchildren’s generous hearts and willingness in providing compassionate service. They all knew Mike who responded to all of these caring young people with a big smile and bright eyes: his tools for communication. He was never able to develop skills involving speech, so all of his talks with friends were done through emotions which could be read on his face.
DR. SEAN IS HERE TO HELP
Sean had a special way with Mike, being able to tease him with humor and gestures. Mike teased back with smiles and laughs. Sean continued his education and is now a practicing chiropractor.
Mike’s dad, realized because of Mike’s condition there were many times when he would become rigid and uncomfortable. That’s when Dad asked Dr. Sean if he would adjust Mike to bring him some comfort and relief. Whether it was an office visit or in Mike’s own home where Dr. Sean also adjusted Dad whose back was beginning to show the years of wear and tear from constantly lifting his son; Mike and Dad always felt better.
CAREGIVING IS A CALLING
One of Ken’s caregivers, Crizaldo, claims that “Caregiving is a calling.” I have always agreed with this. Mike, who passed on last week from natural causes, had two special caregivers, Mom and Dad, who were, indeed, called to care for him. Together they have provided him with bounteous love, patience. understanding and unconditional devotion. Hats off to Mike’s Mom and Dad.
May all caregivers be as loving and dedicated.
For more information go to: http://www.nbcnews.com/health/health-news/disabled-adult-child-can-mean-uncertain-future-parents-f8C11379333
DEMENTIA – A STARTING POINT
August 24, 2014 – What is dementia and how does it relate to Alzheimer’s? Years ago they said that he/she is getting senile, or he/she is entering into their second childhood. If a loved one became cross or cantankerous one might say, “He/she is having a moment of senile agitation.” Then an observer could quickly cut to the chase with “He/she is downright crazy.”
Over the years descriptive words and terms do change. It wasn’t political correctness that brought about the change from yesteryear, it was a more conclusive definition that brought the word dementia into use as the more descriptive and popular term to describe loss of cognitive reasoning. The explanation from one dictionary is “a condition of deteriorated mentality.” Continue reading
A QUESTION OF FORGIVING
August 17, 2014 – Where is my help? Where is my family when I need them? Where are my friends in my hours of want and and where is that soft shoulder to cry on?Why should I be forgiving when I ask these questions without an answer?
Most were there in the beginning. Whether the disease is Alzheimer’s, Cancer or any other life threatening illness there appears to be lots of verbal support when the dire announcement is first acknowledged and then made public to any and all concerned. “My father, mother, sister, brother, wife, husband or child has such and such disease.
Almost universally the response is, “What can I do to help.” It is sincere and from the heart in most cases. I say that because there will be some in your address book of friends and family whose thoughts are more like, “How can I escape from this sad news?” “I just can’t deal with it.” “I don’t want to hear any more about Alzheimer’s.” Continue reading
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START WITH HELP FROM ABOVE
August 8, 2014 — The most important of all Alzheimer’s tips, and it sounds like a tall order: trying to make life pleasant for all involved in the world of Alzheimer’s. An impossible task one might say, but that’s the goal. For me, being a woman of faith, that’s where I begin: with faith. After you’ve talked with doctors, family, friends and any professionals who are experts in the field of dementia, there is still one more support system. For me it’s my Father in Heaven. For those who might not feel comfortable approaching Deity, then do as they do at AA meetings. Turn your thoughts, attention and gratitude to a higher power, and most importantly make the Serenity prayer a part of your day. You know the one: “Grant me the power to accept those things I cannot change, and the wisdom to know the difference.”
Trying to capture the attention of a person with dementia in an effort to make them understand your thinking is about as reasonable as trying to explain algebra to a one-year-old. I’m not talking about patients who have been recently diagnosed with any form of dementia. I’m referring to one who has had the disease and have become lost in a confusing world of deep forgetting. When you correct them it can, and often does, start an argument. This is your opportunity to switch your conversation to something else: change the subject.
Don’t add to the confusion they already feel by asking, “Don’t you remember when we visited our friends in Oregon?” I am certain that deep in the heart of AD patients they would love to remember the trip. For them, though, the memory and the friends are totally gone. Nagging them to remember only brings out frustration and adds to the anger they might be feeling.
We know from our own experiences about body language and facial expressions. Little things tell a lot. I notice Ken’s expression most when he is eating. At one time he would say, “This is really good,” or something else to let me know that he liked my cooking. Now I can see it in his eyes or how he crinkles his nose and moves his mouth that he likes what he’s eating. Not liking the food is even more obvious. He knows how to spit it out.
REFUSAL AND ANGER
There have been times when Ken has shoved his tray away or deliberately dislodged it from the caregiver’s hands and sent the food flying through space. For whatever reason, they can’t help what happened. Possibly they don’t even know why they did what they did. So collect yourself, count to 10, 20 or even 100, immediately forgive your Alzheimer’s patient and start all over again. Wait for a time and offer again, but slowly. Remember the key word: patience.
A WAITING GAME
Once when Ken had dismissed me as his wife at bedtime and told me get out of his house I was devastated even though I knew that Alzheimer’s was the culprit. I even sat and cried with him at midnight because his wife was out there alone and he was worried to the point of being ill.
Eventually, to help bring her home in his troubled mind, and with a coat over my night clothes I exited the house through the back door and entered through the front door while calling his name. That time (2:00a.m.) he accepted me as his wife, scolded me for being gone for such a long time and said. “You’re home and safe. Let’s go to bed.” So remember when one thing doesn’t work, try a different approach.
KEEP IT SIMPLE
Life is complicated for the caregivers, and no doubt it must be very complicated for the Alzheimer’s patient as well. So forget the big brass band and fireworks. Just keep things simple – something with which he/she has been familiar. Party time with noise and crowds is a thing of the past. Quiet and comfortable is now the order of the day.
CLOSE THE DAY WITH DEITY OR YOUR HIGHER POWER
Was it a good day? Was the Alzheimer’s patient as happy as he could be, then be thankful and let the powers that be know of your gratitude. Once gratitude is given, then you might ask for help and guidance with the days to come. Even if it’s a family member or good friend who helped, give them thanks for helping you through the day. These simple Alzheimer’s tips can make the difference between feeling on top of things or giving into the stress and depression because of the difficult job you are accomplishing.