Alzheimer’s Concerns

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. 

Originally posted 2016-10-16 02:04:55.

THE “WHAT-IFS” OF ALZHEIMER’S

What ifsMAYBE TOMORROW OR EVEN NEXT WEEK

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

Originally posted 2015-04-19 06:23:07.

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.

Alzheimer’s and The Big Put On

ALZHEIMER’S: “IS HE FOR REAL?” 

Septemer 27, 2013 — “Is Ken putting me on?”  That was a question many years ago from Steve several months after Ken was diagnosed with Alzheimer’s.  The man to whom Steve referred looked like Ken and sounded like Ken, but what Ken was saying just didn’t make sense.  For Steve, that wasn’t Ken or Ken was teasing after many dormant years.

LIFE-LONG RELATIONSHIPS

We’ve known Steve since the day he was born.  Near the same age as our older son he and Kevin were just a few of the kids growing up on our block as they all leaped from babies to children to teens and then entered into adulthood.

Through the years, Steve and Ken developed a relationship almost like family, as my friendly husband did with other young people in the neighborhood.  It was well into the age of the baby boomers.  Young families filled their tract houses with children who had been delayed by World War II and the Korean Conflict.  The returning G.I.s more than made up for the better part of those years lost fighting for freedom. Consequently, birth rates were at the top of the charts and children were everywhere.

When school was dismissed in late May of each year our one-block street looked like the school yard at recess time.  All ages were in and out of one another’s houses — and bathrooms — playing soft ball on the quiet street, racing through back yards, climbing on swing sets and jungle gyms, splashing in wading pools and some learned to swim in the neighbor’s pool. So in the natural course of events that feeling of a neighborhood family was part of their growing-up years.

The adults watched with a mixture of parental pride balanced with noted discipline and to keep the balance there was a bit of teasing and tom-foolery.  Ken was a kidder from way back, and took special enjoyment in not only teasing his own brood but the children of his neighbors too, especially Steve.  Being a serious child he took most of Ken’s torments as truth.  Of course Steve outgrew his gullibility and as adults there was fun and mutual respect, with the generations blending and becoming good friends. Continue reading

Originally posted 2013-09-29 05:13:39.

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.

ALZHEIMER’S, PAIN AND THANKSGIVING

PAIN AND ALZHEIMER’S

 A woman cries in pain

Pain comes in many forms to different people.

November 16, 2012 – Pain:  Something we all experience in many forms yet it remains undecribed and unmeasured because there is no scale or other device to record those calculations.  The severity of the pain may be determined really bad as medics watch a patient’s blood pressure skyrocket under many kinds of duress, or the doctor will summarize it with, “She/he is in a lot of pain.”

A friend might say, “I feel your pain.”  Perhaps.  But to what degree?  So the remark should be graciously accepted for what it is: concern, sympathy, comfort, recognition or even empathy for where you are in life’s battle at that moment, and for what discomfort you are feeling – either mentally, emotionally, physically or all of the above. Continue reading

Originally posted 2012-11-17 21:48:36.

THE ALZHEIMER’S BURDEN? AND WHO’S IN CONTROL

By Ann Romick

old woman carrying a burden

A major concern for many people with Alzheimer’s is not being a burden.

August 17, 2012 — When abilities began to fade most healthy older people realize that changes are ahead.  “We don’t want to be a burden to you,” said my mother as the two of us talked about the realities of growing old — when she and my father would become less able. Certainly not an original quote, but one probably spoken by all aging parents to their children when faced with old age or their life is threatened by some sinister disease such as any under the Dementia Umbrella.  For me and my husband Ken three out of four parents developed Alzheimer’s  in their last years. Ken makes number four.

BURDEN?

So what defines a burden?  “Well!” snipped one of my sisters from out of state, “If you felt that caring for our parents was such a burden you shouldn’t have done it.”  I wanted to ask, “Who else?”  Sometimes being snippy in return is just a way with some siblings, especially after years of caring for our parents. Instead I zipped my lip. Lip zipping would have pleased mom and dad.

Definitions include a heavy weight, load, or encumbrance of sorts, possibly a drain on finances, and definitely one on emotions and physical strengths.  Does it mean additional work for the selected caregiver?  Absolutely!  A change in routine, lifestyle, conceivably a strain on family relationships – even strains on a marriage, and yet some people ask, “Is it a burden?”  Of course it’s a burden – a very heavy load – but one accepted with grace and love for any of our loved ones who have carried burdens for us from time to time – or not.  It’s love that lightens the load. So tempered with that love, a good attitude and lots of prayers, for those who are so inclined, most caregivers get through – often struggling – but we do get through. Continue reading

Originally posted 2012-08-17 23:40:37.

SHOWERS: SOME DAYS ARE BETTER THAN OTHERS

 

Man in Shower 2

Showers can be difficult for Alzheimer’s caregivers.

SHOWER:  I CAN DO IT MYSELF

July 27, 2012 — Today was a good day with Ken even though Alzheimer’s has taken him very deep into self.  I have often wondered about the deep dark pit of self and what parts of personality might be fragmented in this lonely place.  I wonder if it’s terribly crowded there because every so often a glimmer of self slips out and pays us a brief visit.  Identifiable only that it was Ken.  Not the Ken of pre-Alzheimer’s, but Ken nonetheless.   He spoke to me and Ben in sentences, disconnected sentences, but sentences, with a few questions intermingled.  I doubt he was interested in the answers, but I was thrilled when he asked who I was. I gave him my name rather than tell him that I was his wife.  Years ago, as he faded deeply into AD, he denied being married so I felt it best to leave it that way.  My name didn’t register and that was all right too.  The best part is when he is communicating with us he is calm and very cooperative during that time period, which makes it special, and easier, because today was shower day. Continue reading

Originally posted 2012-07-28 00:00:00.

IS THAT A GLOW AT THE END OF THE ALZHEIMER’S TUNNEL?

Light at the end of the tunnel

A new drug for cancer may be affective in treating Alzheimer's. Not a real light, but possibly a glow at the end of the tunnel

3/23/12 Please note that I don’t refer to anything as a “light” at the end of the Alzheimer’s tunnel because so far there is none.  Nor, as I have stated previously am I a medic of any sort, neither am I a scientist.  I read, and I often write about what I read. However, some research indicates that there may be a bit of new hope, a glimmer – a glow, in a cancer drug, bexarotene (Targretin) which has been successfully used for the past 13 years as a treatment for cutaneous T cell lymphomas.  There may be a possibility that it could erase some of the gook covering the brain of Alzheimer’s  victims.

OF MICE AND MEN WITH ALZHEIMER’S

I find it fascinating that scientific minds must do some kind of cross-overs — the same way classical singers sparkle when suddenly they show up with a No. 1 hit in the pop song arena.  How do they do that, and do scientists stay awake at night wondering how one successful drug might react in an entirely different area? 

 Apparently that’s what has happened with bexarotene, cancer, mice and Alzheimer’s.  These mice, mind you, are genetically engineered to become subject to Alzheimer’s disease.  Observed symptoms of the AD mice indicate they are forgetful as demonstrated by loss of natural instinctive traits such as using nearby materials for nesting.  It was discovered that these same mice having amyloid beta peptides (toxic protein fragments that gum up neurons leading to cell death and signs of forgetfulness) responded amazingly after treatment with bexarotene.

Following three days of the drug treatment, changes in brain imaging were observed.  The brain of the AD mouse showed considerable clearing.  Within six hours a single dose of bexarotene lowered the most toxic form of the peptides by 25%.  The mice, once encumbered by amyloid proteins, began to crinkle tissue for nest building.  Exciting for the mice and the scientists, but man’s brain is not the brain of a mouse.

BUT ALZHEIMER’S IS NOT CANCER

With this scrap of information caregivers and loved ones of AD patients are clamoring for their patients to be included in clinical trials – understandable.  However, a worst case scenario is the demand by some loved ones for immediate use of bexarotene on their patient.  In their desired efforts to “cure” Alzheimer’s desperate people often overlook the necessity of moving slowly.  Bexarotene has been approved by the FDA for treatment of a certain cancer. For use with AD it must be submitted once again to the FDA for approval in treating AD.  To use it off label would be irresponsible for both doctors and laymen no matter how anxious everyone is to find some kind of solution to reverse Alzheimer’s.

Furthermore, while we would heal our husbands, wives and others whose brains have been ravaged by this disease and would stop at nothing — money be hanged — reality must be the wisdom of decision.  Until bexarotene loses its patent for cancer treatment in a few years, the price could be prohibitive for most people, and it is highly unlikely to be covered by any insurance including Medicare. A quick survey indicated the cost of 30 pills is presently in the realm of $1,250.  Adding to the note of caution we all must remember that if we had this promising miracle drug in our possession, no one has a clue as to the amount and how often the treatment should be administered. 

In one article I read at The Alzheimer’s Reading Room bexatorene was compared to an eraser.  So it eliminates the gook – like cleaning the blackboard – but when the blackboard is clean does the eraser stop?  How much is too much? Could too much of a good thing be like lye or acid applied to the fragile fabric of the brain?  What then?  Oops?  Caution is a good thing.

STILL LOTS OF UNKNOWNS ABOUT THE BRAIN

The complexity of the brain must be considered.  Again, I repeat:  mouse brain is not the brain of man.  No doubt researchers and all of us who’s loved ones are stricken hope for a cure — that pie-in-the-sky drug — or some kind of medication – holistic or manufactured – which would be capable of clearing existing amyloid deposits is everyone’s fondest wish.  And in clearing the excess amyloid in the fluid-filled space between neurons what else would it to do to man’s brain?  “Continued caution,” insist some researchers as bexarotene may do more damage than good such as cause bollixing to the intricate biochemical functioning of the very areas of the brain which we all hope to repair.

SOMETHING FOR KEN?

Personally, my hope in bexarotene is for future use with generations to come.  Ken’s age and condition tell me that research medicine for him is too late.  Some medical people have said that even now any miraculous breakthrough would probably be ineffective for mid and severe cases of Alzheimer’s. They are probably right. He is now at the severe stage. 

I have no idea what an imaging of Ken’s brain would look like at this point, nor do I want to know.  He is who he has become and I am accepting. However, I recently read about treating Alzheimer’s with virgin coconut oil.  Hmmm.  I suppose where there’s life there’s still hope, and using a natural substance it’s something I can do.

 

Originally posted 2012-03-24 00:08:11.

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.

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