Alzheimer’s Disease

THE ALZHEIMER’S WORLD AND CHANGES

 

Sad globe with Alzheimer's.

Living in the Alzheimer’s world is confusing to both those who have the disease and their caregivers.

LIFE IS JUST DIFFERENT IN THE ALZHEIMER’S WORLD

 It’s different now.  Holidays are different.  Life is different.  Our world is different. We now live in the World of Alzheimer’s, a place we would have never chosen.  But then, we don’t always get to choose the road where life takes us.  However, we do adjust.  That’s what one of Ken’s caregivers Crizaldo said, when we talked about world conditions and the never-ending problems constantly on the horizon. “No matter where we are or what happens,” he said, “it’s how we adjust that’s important.”

 LEARN AS WE GO

Living in the Alzheimer’s world is always a learning situation.  We learn early on that our loved one is constantly changing often taking on different personalities, some we don’t much like, but that’s not the point.  The loved one is still our loved one and the disease is taking them into a place they don’t much like either.  Our friend Ila of long ago must have known somehow that she was falling into a deteriorating condition.  There were times when she would ask her husband or friends, “What’s happening to me?”  My own mother would say, “Something’s wrong with me.”  Gripping onto who they had been, both women were puzzled as they recognized changes which must have been a very frightening experience for them.  As friends, family and cargivers we need to know how to ease their worries and set their minds to rest.  When memory is illusive it’s all right to change the subject.  If they have been diagnosed then we can just blame it onto the disease.  If not the patient can feel at ease knowing they are scheduled to see their doctor.

 ACTIVITIES FOR THE PATIENT

 Check your community.  My friend Darline goes to adult daycare three times during the week. This is not only good for the AD patient, it’s good for her daughter caregiver to have a break.  Activities at daycare may resemble nursery school, but that’s all right.  Whatever keeps the Alzheimer’s patient occupied is a gift and just what they need.

 KEEP IT SIMPLE

 At home activities can be something the patient has been doing all their life.  I gave my mom, who had been an expert seamstress and needle woman, a small square of quilting so she could stitch the layers together.  Unfortunately, she had lost her sewing skills and complained about the needle and the thread, and then handed the project back to me.   Perhaps I had overestimated her capabilities and it was too complex at that point in her disease so I gave her a box of trim to untangle.  This she did with great relish.  It was a challenge which she understood and did by gently undoing knots and tangles, and then she rolled each piece into a ball. When one thing doesn’t work, then try something else.

ACCEPTANCE

 Yes, life with Alzheimer’s is different, but it’s when we finally accept where we are and where our loved one is, that together we can move on.  I try to think of this experience as my Alzheimer’s husband’s caregiver as just another chapter in our book of life. Remember they can’t help what has happened to them so it’s our responsibility to help them through their confusing Alzheimer’s world. 

Alzheimer’s World photo courtesy of Creative Commons.

 

Originally posted 2014-02-02 18:46:45.

THE CAREGIVER CALLING AND ALZHEIMER’S

DEFINING A PERSON

 My daughter Debbie has a master’s degree in education and taught children with special needs before taking an early retirement.  One of the most important instructions in teaching her students was to always identify the children as who they are not what they are.  Better said you would refer to Jamie as one of the students who has cerebral palsy; not as my cerebral palsy student, Jamie. 

DEFINING CAREGIVING

She uses the same terminology when speaking about her father:  “My father who has Alzheimer’s disease.”  I like that. It gives her father, my husband Ken, the dignity and respect he deserves; the same dignity and respect that everyone deserves.  Thinking along these lines I can hear Crizaldo telling me that being a caregiver is a calling.  I love the way my husband’s caregivers work with him with such kindness, such gentleness.  No matter how stressful Ken may make the situation, Crizaldo, Ben and David are calm – never losing their temper or becoming irritated.  Calling:  In that declaration I believe he is referring to professional caregivers, but then again it could also apply to a family caregiver who is so dedicated in caregivng for his/her charge that it too might be a calling.

 Nevertheless, I see these men in my life who help with Ken as very special people, and yes, people with caregiving callings. Unfortunately Crizaldo tells me of people he has worked with in care facilities that do their job but without the dedication and gentleness of a calling. Continue reading

Originally posted 2013-09-15 20:10:42.

AT THE MOVIES WITH ALZHEIMER’S

Movie theater marquee at opening night

Frequent movie dates became part of the past when  Alzheimer’s got in the way.

January 4, 2013 — Our first date was at the movies.  Jim, who worked in the same office where I worked, dropped by my desk and asked if I would be interested in going out with one of his friends, Bud.  Perhaps, he suggested, the four of us (he was dating Jeannie who also worked in our office) could go to a movie and then have a bite to eat afterward.  Hesitating a bit I asked, “Is your friend Bud taller than I am?”  “I think so,” Jim replied, “Bud, Ken, is 6’2.”  I know my question sounded rather shallow, but wearing heels I was 5’10” and towered over many of the young men I knew, including Jim.  “Sounds okay,” I said and he filled in with all the details of my first date with the man I would eventually marry.  Continue reading

Originally posted 2013-01-06 13:53:52.

THE ALZHEIMER’S LETTER

junk mail

Responding to donations for one cause resulted in a whole slew of more requests.

 

 

June 8, 2012 — There are times when I look back on Ken’s diagnosis and wonder if he went into immediate denial or if he just didn’t understand the full ramifications of Alzheimer’s.

CROHN’S

I did write about Crohn’s a while back in “Okay, Give Me My Shot,” loosely defining it because it has been a major health issue with Ken for decades.  Among the indicators of the disease is pain. To eliminate the pain and the accompanying symptoms of Crohn’s required an extreme change in diet.  High protein, low residue: meat, potatoes and white bread.  “That’s all,” the doctor said. Continue reading

Originally posted 2012-06-09 04:50:06.

ALZHEIMER’S PATIENT RETORTS – “OKAY, GIVE ME MY SHOT”

needle

As an Alzxheimer's patient, getting a shot brought some recognition to Ken.

ALZHEIMER’S AND CROHN’S DISEASE

3/16/12 Within six months of our wedding Ken began having terrible stomach pains. Our doctor, finding he had spent several years of World War II in the South Pacific determined he had picked up some kind of parasite. Tests proved otherwise, baffling the experts. Several years later those same experts determined the problem to be regional ileitis, which later was given the name Crohn’s disease taking in a much broader area than just the ileum. Nevertheless, we determined it was something he would learn to endure beginning with a special diet referred to as high protein-low-residue:  boring.

After a few years and giving it a valiant try Ken said, “I can’t live the rest of my life on this diet, please give me a real meal.” Gradually returning to “normal” eating he soon learned to avoid those foods which caused any discomfort.  Near-normal made him a happier person which, in and of itself, eliminated a portion of “stress.” I suppose he considered it a tradeoff.

AN “AB” PERSONALITY

I never thought of my husband as a stressed person — more of an intense man: enthusiastic, happy and excited about everything that came down the pike.  Like the typical “A” personality he was competitive, ambitious, impatient, punctual to a fault, and organized (at work) down to the last number of his calculations, but at home he could be casual and laid back wiling away the hours on TV sports or having fun.  The “A” “B” personality theory, while no longer considered a theory is, therefore, ripe for combining the two making Ken the master “AB” personality.  No matter, though, whatever letters of the alphabet made this zealous man tick he was into it one hundred percent.  Whether or not it had an effect on his chronic health condition is, no doubt, debatable.  Like Alzheimer’s disease, Crohn’s has no cure.  Unlike Alzheimer’s it can be managed over many years — if not for a life time.

As Ken aged the diseased area of intestine became increasingly more sensitive causing periodic blockages. Painful with drainage required, the problem always needed a hospital setting.  Days later and homeward bound , the diet for recovery was Jell-O and broth for a few weeks gradually returning to his usual menu. Eventually, the blockages, occurring more and more frequently, necessitated surgery and the removal of about three feet of very diseased intestine.

The surgeon explained the portion removed was an area which absorbed many of the nutrients, minerals and vitamins so necessary for a healthy body. The biggest concern, though, was Ken’s inability to absorb Vitamin B12. “He will have to come in once a month for that important shot,” insisted the doctor. “The body cannot function without it.”

B12 SHOTS — THE ANSWER FOR CONTINUING HEALTH

Nevertheless, for nearly two decades following the surgery he was the picture of health with no more blockages.  Feeling like a new man he picked up his gym membership and ran 10ks and a few marathons.  Knowing its importance he never missed the prescribed vitamin shots.  Somewhere around the 15th of each month Ken drove himself to the clinic of our HMO and received his shot.  He actually looked forward to his special date with a bevy of nurses who quickly got to know my gregarious husband.  Each taking their turn plunging the needle into the eye of a tiger tattoo on one upper arm, or the clipper ship’s sail located on the opposite shoulder area.  In and out in a matter of minutes he always returned home smiling telling me what fun he had joking with the nurses about his numerous tattoos.

When Alzheimer’s entered our lives and his driver’s license was revoked I drove him to his nurse date. Nothing changed except he now had a chauffeur in the waiting room as he exited the lab door with his usual smiling face and a chorus of female voices singing out their goodbyes.

After a time Alzheimer’s chiseled away most of his affability causing him to become less cooperative, less gregarious and less willing to allow even the most experienced of nurses to stick him with a needle. Still Ben and I continued his monthly visit. It was no longer a pleasant trip. He became confrontational with me and Ben, and occasionally was a threat to any Good Samaritan who tried to help. Other times calmness prevailed as the familiarity of the nurses calling him Ken subdued him temporarily. However, I was becoming concerned for the staff and other people sitting in the waiting area. “You can always give him the shot at home,” advised our doctor.

KRISTINA SAVES THE DAY

Enter granddaughter Kristina who has stayed with us during a few intervals, one while attending school and graduating as a medical assistant. “I can give him his B-12 shot,” she said confidently, “And I’ll make sure I’m here around the 15th of each month.” True to her word she is always here and the shot ready. However, it’s still no picnic. Ben and I hold Ken’s arms and Kris does her job.

“Hi Grandpa,” she coos. “I’m going to give you your shot.” Or she might greet him as a professional, “Hi, Ken. I’m here to give you your shot.” “No you’re not!” he often grumbles. Together, though, we prevail and just as it had been with the nurses at the HMO it was over in a moment except he seldom smiled or joked as he did long ago when he was well. Gradually, Kristina’s presence seems to become more acceptable as granddaughter becomes more nurse than family.

Recently, she dropped by early in the month for a visit and greeted her grandfather with, “Hi Ken. How are you today?” He looked up and said, “Okay, give me my shot.”

We all stood open-mouthed: stunned for a moment. That small pathway to memory had allowed a connection. Probably not in the complicated genealogical line of family, but for that short span of time she was someone he trusted – just the same as he had trusted the nurses. Whether the neurons will allow his mind that scrap of memory when she comes again on the 15th I don’t know, but I’m always grateful for any link with Ken at any time and for any reason. Perhaps, in a few weeks, he will look once again at Kristina and say, “Okay, give me my shot.” I can only hope.

 

Originally posted 2012-03-17 06:57:41.

THE HIGHEST OF HONORS

Most of the people with whom Ken and I have shared our adult lives made the choice, following marriage, to have children — lots of them.   The trend, which was very popular after World War II and the Korean Conflict was to have large families.  As part of that trend, we are the parents of five offspring:  two girls and three boys — stragglers of the “Baby Boomer Generation.”   Our years of rearing children were the best years of our lives, nothing out of the ordinary: normal, I would say.  We did PTA, Dads’ Club, Little League, Scouts — boy and girl — church with all of its youth programs and activities, enjoyed their friends: good and tolerated the bad; we endured sick days, happy days, school days, vacation days, holidays and rebel days.  We angst through the 60s and worried about drugs, hippies and all the ramifications that went with young people coming of age during such a traumatic, often radical, period of history and being faced with choices where their lives could have been damaged, ruined or even claimed by death, but they survived and so did we.

The growing years went by in a blur as if we had pushed the fast-forward button of a VCR.  Some of our brood went to college, others did not, but in any event they all turned out pretty much okay, and then as young adults they picked up their lives and went their chosen way.  Normal and happy:  that’s what we wanted.  Yet as each one left the nest they left an empty spot in our hearts.  For most of the years which followed, they have lived close by with their growing families, and we consider that a blessing.  While we are no longer the strong beacon of influence we hoped to have been, we treasure  the grown-up relationship we have with all of them.

Parenting, however, is still such a constant, and while Ken and I had rediscovered “us” and had moved on into our retirement years, we wanted that safety net to remain for these grown children: the knowledge that we were and are still “there” for them — in every way.   It isn’t because they really “needed” us, it’s their knowing that counts.  I’ve often compared us, “mom and dad,” (other moms and dads as well) to the stove and refrigerator — even the washer and dryer — the house, the car — home; “there,” we’re just “there.”   We are part of that security, that solidarity which they have known “always,” and will, hopefully, remember in a good and loving and “normal” way.

So what do we, as parents, expect in return?   Actually nothing, but cards and perhaps a few flowers, or some other small token of love on birthdays, Mothers’ and Fathers’ Day; love and respect and occasional phone calls — and visits.  But accolades?  I don’t think so, believing myself and Ken to be ordinary people. Yet, to my surprise my daughter, Debbie, nominated me for “Caregiver of The Year” through a website out of Chicago: http://www.caregiving.com with Diane Brown as the host of the site, and her own internet/radio program.  I am one of the five recipients to receive the award and I am honored and humbled.  When I read Debbie’s letter of nomination, and her description of what she has observed over the years, I cried.   Such a high compliment to receive:  for her to see me not only as her mother, but as a wife, a person — an individual in my own right — someone who has had a life and has, possibly, made some kind of contribution to mankind and the world in which we all live, and for her to want me honored is an honor in itself.  The following is her letter of nomination:

“I am writing about my father’s caregiver, my mother.  Given all the other service-oriented activities she has been part of:  PTA, Scouts, Little League, and church, this would not be out of the ordinary, but my father is the fourth family member with Alzheimer’s that she has given or directly supervised their in-home care.

“Her first experience with the disease came with my father’s parents.  I cannot remember when they were stricken, or what their ages were.  I remember their 50th wedding anniversary; my grandmother was 68, and my grandfather 12 years older.  They both seemed fine at the event, but shortly after the celebration, my mother began to make more and more visits to their home.  They lived about 30 miles away and my mother made several trips a month to take them to the doctor, for haircuts, or to make sure they had food in their pantry and refrigerator.  My father’s sister lived a few blocks away from them, but because she was a single mother and worked full-time, she had little time left to spare.

“My mother was truly the sandwich generation, as I had three younger brother’s still living at home.  I know that she was devoted to home and child care, but she was also realizing some success as a freelance writer.  However,  by unspoken agreement between my father, his sister and herself  it was a given, because she didn’t “work,” the responsibility of caring for my father’s aging parents would belong to her.  Even though the current social climate touted women’s rights, liberation and the importance of career, my mother’s dreams of being a writer were squeezed between appointments, errands and all the other aspects of her busy life and giving nature.  She had no time to think about whether she was liberated.

“With the death of my paternal grandparents, the needs of her own parents soon crept in and once again began to take over her life.  When her own mother developed the same symptoms that her in-laws had shown, she moved them from their country home, which was two hours away, to another home just a mile from her own.  Her older sisters lived two states away, and once again, the burden of care for their mother fell on mom’s shoulders.  Any spare time was spent in the busyness, stress and exhaustion of caring for another Alzheimer’s patient, as well as making sure all of her father’s health needs were met. Sound as a long-ago dollar he never had dementia.  As her mother’s condition worsened, they tried a care facility.  Its effects were devastating not only to her mother, but also to her father who could not handle the toll the confusion and foreign surroundings brought on his wife which only added to his own despair.  Luckily my mother found a dear friend who took over much of the burden of caring for the older couple the last few years of their lives.  Despite the help, mom was very much involved in their care.  She was continually at their home doing what she could and again, the sole driver for appointments and outings, which continued until the elderly couple passed.

“Following a few years respite, the ugly signs of Alzheimer’s appeared in our family once again, this time afflicting my father.  After her experience with her mother and in-laws, one might think she would be an expert, but not so.  Everyone is different and seeing your parents change into people you no longer knew, cannot be the same as having your beloved spouse of almost 60 years, not only not recognize you, but demand that you leave your own home.

“My mother has risen to this challenge with fortitude, determination and a sense of humor.  She has become somewhat of an expert on the holistic treatment of this disease, and in a sense, she has won.  Whether it is the day-to-day battle or the full war, only time will tell.  After six years my father continues to live at home.  Each day he takes a handful of pills and vitamins that may have allowed him to retain enough of his personality to care for his physical needs, and for the most part functions as a young boy in their home, with small moments of time as my father.  The war will be over when he is taken to his Heavenly home.  Hopefully that will happen sometime in his sleep and then my mother will be victorious, as she has finished this last act of marital service and love.  I cannot imagine the emotional pain this has wrought on her, and the torture she has felt as she has lost her soul mate, bit by bit.  Her perseverance and optimism are amazing.  Her example reminds me that we are never given more than we can handle.  And through this all, she has developed her talents and her career.  The disease and her life have given her a story which she shares in a blog.  Eventually there will be a book — an example of courage and service for other caregivers and her legacy of service and love to her family.”

Originally posted 2010-01-28 05:59:25.

the scream by Edvard Munch

Ungrounded fear is another trait of those with Alzheimer’s.

October14, 2016 – Just the word Alzheimer’s strikes fear in the hearts of just about everyone I know. It doesn’t matter if you are old, middle-aged or a young adult. It is a fearful disease. Alzheimer’s also appears to be a family disease, often passed on from one generation to the next, but not always. I like to quote from my primary-care doctor when I asked him about Ken following what I believed to be early signs of the disease. “Both of my husband’s parents had Alzheimer’s in their later years, doctor. Does that mean Ken will get Alzheimer’s when he gets on in years?” The good doctor smiled and said, “When conception occurs, the fetus has a vast gene pool from which to draw, so my answer is maybe yes and maybe no.”

I would have been much more satisfied if he could have given me a definite “No,” but with the disease in epidemic numbers at this time, his vague response was an appropriate answer.

QUESTIONING HIS OWN CONFIDENCE

Whether or not he was doubting my love for him, or questioning his own self-worth the day we picked up his first prescription of Namenda which had been prescribed by his neurologist, was a day of fear. The cost, especially compared to his Vitamin B shots was staggering. Arriving at the pick-up counter he grimaced at the price, looked over to me mouthing the amount. Then he asked, “Am I worth it?”

Walking to his side I replied, “Of course you are. We’ll pay whatever it takes. I love you.” He picked up the small package and we returned to the car.

ANOTHER CAA lon

A few years into the disease, I watched his paranoia set in with the fear that followed. Within the safety of our home, he worried if the blinds were open. He safety checked each room making sure no intruders were lurking behind the bed or hiding in the closets. Peeking through the slats of the blinds he warned me not to open them during the night because there were people shining bright lights from the buildings behind us, watching what we were doing. I never argued with him about the possibility. I knew enough about the strange disease not to confront him about his delusional behavior.

BEING ALONE WITHOUT ME

A long-time friend called from out of the blue suggesting I call a certain number in San Francisco to see if Ken might qualify for their program of clinical trials. We made an appointment where he was examined by several doctors and staff who confirmed that, indeed, he did have Alzheimer’s. The doctor in charge suggested a few tests where they might be able to use Ken, if he was accepted into the program. “He’ll have to spend a few nights with us,” we were told. As soon as the door closed and the staff was gone, Ken looked at me as if he were a frightened five-year-old child. “I don’t want to stay here without you,” he murmured. Seeing the fear and worry in his handsome face I reassured him that if he stayed I would stay with him.

Because Ken lived his life with Chron’s disease as well as AD., he had experienced several blockages. Following his battle of decades with Chron’s, the doctors removed several feet of his small intestine that was badly diseased. The removal of this important part of the digestive tract caused his system to discontinue absorbing important vitamins,minerals, other nutrients, and medications taken by mouth. With these facts the decision for Ken to participate in the scheduled trials was more than “iffy.” Later that week I called to see if a decision had been reached. Ken was disqualified as there was no way of knowing with certainty that the medications would be absorbed because of the missing section of his digestive system.

As Alzheimer’s continued over a number of years I believe his fear and paranoia left. I had no doubt that his shrinking brain had eliminated much of any emotion he may have had. I only hope that deep somewhere inside he knew that I never left him to be by himself. Alzheimer’s disease is a horrible thing to happen to anyone, and that in itself can justify fear to his progeny. No matter what the outcome, comfort may come from knowing that despite fear, medical advances and research bring hope for a future cure, or at least some way of control and slow the speed of decline. 

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