April 15, 2015 – As a former caregiver for my husband Ken that thought, “The what-ifs?” often became part pf my thoughts. “Maybe tomorrow or even next week there will be cure for AD” ran through my mind constantly especially when an important item on the evening news announced: “A new advancement for Alzheimer’s disease is being further tested on mice.” Usually, the “news flash” occurred on a slow-news day and was just a rehash of a previous “breakthrough story” one of the “breakthroughs” that really weren’t news worthy at all – just an attention grabber. Such items are always a major disappointment for any caregiver listeners, whose highest hope hangs on to any and all “breakthroughs.”
My heart had always skipped a few beats at the beginning of the announced breakthrough, but hopes were quickly and cruelly dashed in finding that, in actuality, there was nothing new at all. Alzheimer’s, it seemed, was/is a nearly impossible nut to crack. Continue reading
SIGNS OF SPRING
April 5, 2015 – Yes, it is a few days after Easter, but it’s also a good time to remember and reflect. Just as living that first year after losing a loved one, Easter is another holiday,not only to get through, but to reminisce and muse about its beginning more than 2,000 years ago. It’s spring again with all the signs: bulbs sprouting forth with flowers of daffodils, lilies, iris, tulips and trees budding with blossoms or new leaves. A season of new life.
Several years ago, well before Easter, when the family was all together with four generations, the discussion turned to the joyful holiday, bunnies, chicks and baskets piled high with eggs of various origins: pastel-colored eggs recently boiled and decorated for the hunt, chocolate bunnies and candy eggs, and, of course, jellybeans in all the colors from a Crayola box.
The conversation hinted that these fun gifts did not come from the famous, imagined bunny of childhood, but from the older folks in the house. Eight-year-old Haley in a disappointed question followed the proverbial cat out of the bag with, “You mean there aren’t real bunnies who bring the baskets?” The truth was out and her comment was a startling disappointment. “No sweetie. It’s just make-believe.” “Then, Why?” she asked. “You mean there are no little chicks either?”
A LEARNING TIME
“Because, the chicks and bunnies and pretty little birds are a reminder to all of us that spring is here and there is new life all around us.” From that point on it was easy to remind the children about the mission of the Messiah, that same Jesus whom they had been hearing about in Sunday School. All about Jesus, his sacrifice and ultimate Crucifixion on the cross, his being in the tomb for three days and finally his resurrection on that first Easter morning. The fact that he brought with him the promise to all of us that we too could experience life after life: a time when we would be resurrected just as Jesus had been.
A REMINDER ABOUT FAITH
As a woman of faith and a disciple of Christ I am warmed by the Easter message: That I will see my beloved husband, Ken, once again in the hereafter, and that both of us will one day be resurrected: me, without my aches and pains of aging, and Ken without Alzheimer’s. That promise is by far the greatest gift any of us could receive, and it doesn’t come in a cellophane-wrapped Easter basket, but from the Lord himself. May we all appreciate that precious gift and live our lives accordingly.
A NEW EXPERIENCE
March 27, 2015 – I noticed a post on Facebook a while back written by a young friend. In it she told of quitting her job because she was going to be caring for her grandfather whom she dearly loved. Of course, grandma too was in the mix, but it was Papa whose health was failing from a cancer he had been living with for some time. She was joyful as she approached a new path in her early journey into life. She loved her grandparents and looked forward to this dedicated and probably her last gift of love for them.
I posted a note back to her expressing my admiration for the altruistic choice she was making, but at the same time I told her that it would be the most difficult job she would ever have.
She answered saying that she was aware of the demands of her commitment, and that for her she was happy to be of service to this loving man and her grandma whose health was good. While Papa still had all of his faculties I was certain that unless something drastic occurred to change the personality of this dear man, the battle of emotions would be easier for her than if he had Alzheimer’s or some other mind-robbing dementia disease.
CANCER AND ALZHEIMER’S
Whatever the disease if it’s a sentence to death it will be heart-wrenching to the family. The big difference between cancer and dementia diseases is that with cancer the patient is still in touch with his or her loved ones. There is communication and reason, more often than not, particularly in the last stages of Alzheimer’s the victim is often without communication with family. Or his/her sentences are broken or garbled. The victim’s understanding is often so dimmed he/she doesn’t know what’s going on in the room around him.
VERBAL AND PHYSICAL ABUSE
That lack of understanding, communication and reason often puts the caregiver in a precarious position where insult and injury may be part of the day’s events.
For a time when I was recuperating from major injuries from an auto accident and unable to help the male caregiver the family had hired with my husband. Fortunately, my granddaughter, who had been staying with us,took my place helping to get Ken up and ready for the day. There were many times when Kristina went off to her room crying a little or a lot after her grandfather had managed to punch or slap her. At that point in his illness he was beyond knowing that he was not well.
When I was able to return as helper there were numerous days when I too wanted to go to my room and cry because of being injured by this man whom I have lived with and loved most of my adult life. I have suffered attempted bites, been pushed, shoved, slapped, punched, clawed, kicked, cursed at, and spit upon. My male caregivers have experienced the same. It’s not only physically exhausting, but emotionally draining.
You cry into the pillows and in the shower and strive not to break down for the patient to see. He or she has their own inner turmoil with which to cope. Yet the caregiver usually survives, but not without some bruises both physical and emotional
THE END IS OFTEN CLOSER THAN WE THINK
My young friend’s precious Papa lived only a few months under her devoted care until he passed on from the natural causes of cancer, as did Ken last October from natural causes complicated by Alzheimer’s.
I am certain that my young friend and I have grown from our individual experiences. So what’s it like to be a caregiver? I will always carry with me the same definition. “It’s the most difficult job in the entire world.”
DEATH WITH ALZHEIMER’S – PART II
OFFICIAL NUMBERS CAN BE QUESTIONABLE
March 23, 2015 – I challenge the official CDC count of people dying from Alzheimer’s disease because the death certificates of four family members did not list Alzheimer’s as the cause of death, and according to the the doctor who signed the death certificate, it wasn’t. It was due to complications resulting from having Alzheimer’s. However when opportunity was there on the certificate under “significant conditions contributing to death” the word NONE was listed. Had Alzheimer’s not been present, these family members would not have died at that given time.
SENTENCE TO DEATH
We, the loved ones, the caregivers of the stricken understand that with diagnosis AD is like any other death sentence. So why isn’t it listed as a contributing factor? Our patient will never recover. What he or she has is eventually terminal. If not from the disease itself, but from complications that will arise no matter how good the care. As of now, this year, the medical community and for all the research taking place, there is no cure for this disease and many others under the dementia umbrella. We have been told that AD is epidemic in the United States and quickly rising in Western society. With all of the world-wide research taking place there are still no medications to cure or delay the ravages of AD for more than a short while. A disease that literally kills the brain and it isn’t even listed as a contributing factor on the death certificates of all our family members who have passed on with Alzheimer’s.
It seems that just about everyone I speak with whose loved one or friend has passed on with AD said that evidence was visible long before the neurologist made his first examination. For example: my sister’s husband Douglas was suffering from throat cancer and was in pain more than he wasn’t. Yet, he was a trooper. With my sister Janet the two had come for a few days’ visit. Douglas felt very cold and even though our house was about 68 degrees he asked if Ken would kick up the thermostat a bit. Ken complied but grumbled for all to hear about not understanding how any one could possibly be cold and that he felt just fine.
It wasn’t like Ken to be so self-centered and rude, nor to challenge someone’s comfort. He lacked understanding, concern and sympathy for his brother-in-law. That was an early change in Ken’s personality who was best known for his easy-going manner and concern for others. I also noticed that he became lost in traffic very easily and confused with directions in going from home to point “B”. A trip to the hardware store needed an exact note in detail or he would come back empty-handed. Facts became other people’s opinions in his mind and he would challenge what others said. He stopped trusting me accusing me of mistakes he was making or imagined. Suddenly I was the one without common sense and he knew everything. Furthermore, he no longer felt that I was capable of doing anything right nor did he want me drive “his” car.
Like the far-off whistle of a train, we, who loved Ken best, knew that Alzheimer’s disease was coming long before it arrived through official diagnosis from a neurologist.
Alzheimer’s disease gobbled up all the sections of Ken’s brain, but according to the nit-pickers, it wasn’t the cause of his death. For me though, and our family, my husband and the father of our grown children died from Alzheimer’s – the innocent, nameless killer.
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A KITCHEN IS NEVER BIG ENOUGH FOR TWO WOMEN
February 20, 2015 – Often when there s a need for assistance in caring for a loved one family members need to turn to outside help; remembering always that this means an adjustment for all concerned. My mother used to say that no one could ever build a kitchen big enough for two women. She then related a family story about her sister.
Mama’s brother-in-law and a good friend agreed to manage a piece of farm land in the Sacramento Valley of California for one of their former employers. Everything was provided in the way of farm equipment, tools and supplies. All the men had to do was make it work. The glitch in the whole agreement was that there was a large 10 room Victorian house with a full basement that would house the two families. To meet personal expenses a generous monthly salary was also provided. Continue reading
A WORD IS A WORD – SEXY
February 13,14,2015 – I watched a Valentine’s Day TV show the other day about sexy food. The participants were either chefs or invited good cooks. They all prepared so-called sexy dishes as a suggestion to the viewers for what might be served on day 14 of this month to anyone’s special person. Personally, I’ve never encountered sexy food, but I’ve often heard of certain foods being an aphrodisiac, such as lobster drizzled with butter or oysters on the half shell. I’ve eaten both, but found no special yearnings for either me or Ken to get a room following consumption. Continue reading
THE EYES HAVE IT
February 6, 2015 – Who in the family gets Alzheimer’s disease and who doesn”t The eyes, it has been said, are the windows to the soul. They are also the windows to illness. “Do I have sick eyes?” my little one used to ask when I told her that I knew she wasn’t feeling well because I could see it in her eyes. A fever and a cough or other youthful maladies could keep my children home from school, but the first tell-tale sign was often their glassy eyes. When they started feeling better those eyes were usually back to normal and it was time to go back to school. Continue reading
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WHERE DO I BEGIN?
January 30, 2015 – Reinventing yourself is a lifetime challenge and often occurs after a major life change. When Ken was with me it was much easier to make changes in our home and our lives. We could meld our ideas which we did. Then when he was out of town, I would began. For one whole week during the summer of ’96, Ken was away at Girl’s Camp volunteering for security duty as well as a highly experienced guide for an overnight backpacking trip. I jam-packed each of the seven days with projects that I just knew would merit his approval. Not only approve, but he would be surprised and so pleased with the outcome. Of that I was certain because he was always pleased with what I did. Continue reading
January 21, 2015 – Today is mine and Ken’s 65th wedding anniversary. I usually think of our years together as more than 50. 65 is considerably more than 50, but I’ve known of others who have reached higher numbers in their pledge to one another. That’s a wonderful thing.
DEVOTION PLUS – SOMETIMES
Marriages that last until one of the partners passes on are apparently rare. What is the national average now? One in three fails in divorce, and stats tell us that with a second or third marriage, divorce is even more at risk. I don’t profess to know what makes committed partners split. I’m sure it can be any number of things. What I do know is that in my immediate family the stats aren’t even one of our three. It’s more like three out of five, but I know the reasons are as different as the people involved. I’m just very glad that Ken and I were able to support them in whatever decisions they made. But more, I’m happy that the two of us made it to the end. Continue reading