Alzheimer’s Concerns

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.

THE IMPORTANCE OF A COUGH — OR HAND HIM A TISSUE

tissue box

A simple cough in the morning can help Alzheimer's caregivers determine if lungs are clear.

COUGH, PLEASE

Recently, while cruising the Internet, as I often do, searching for what might be new in the world of Alzheimer’s;  I stumbled upon a blog on the importance of keeping the patient’s lungs clear.    Even when one isn’t an Alzheimer’s patient it’s important to keep the lungs clear, and if you’ve suffered a broken rib or two which can be pneumonia threatening, you need to keep coughing and clearing. That’s why your benefactor, nurse or, perhaps, an adult child keeps nagging:  breathe – deeper – deeper — now cough.  Then cough some more – again – and again.  Never mind that it hurts like blazes, just keep deep breathing and coughing. When an approved amount of rattle is made and the sound of phlegm being dislodged can be heard by one and all, the patient, whether young, old or in between, sick in bed, or an Alzheimer’s patient gets to rest – at least for a while.

The subject matter of the blog, however, was not pneumonia or broken ribs; it was about phlegm – and its removal — so important for everyone, but particularly for older people.

At the top of the article there was a photograph of a man ejecting phlegm.  “Yuk,” I said to myself, eyes diverting to the text and scrolling down beyond the disgusting image.  The writer went on, using the popular vernacular term of “lunger” to describe the dislodged matter making me giggle with thoughts of both Ken and his father, Nick.

A STORY ABOUT SPIT

Many years ago, I had taken my father-in-law, who was in the beginning stages of Alzheimer’s, to the doctor for a physical.  After all was said and done – mostly the done part – we sat in the office so Dr. Nice could fill in the blanks.

“How old are you, Sir?”

“80.”

“Generally speaking, how is your health?”

“Good.”

“How do you feel in the morning?” continued the doctor.

“Okay.”

“Do you cough?”

“What?”

Though in denial, Nick was becoming very hard of hearing so when I knew he didn’t hear the doctor’s question I repeated it. “Nick, the doctor asked if you cough in the morning.”

“Sometimes,” Nick answered.

“Do you have sputum in the morning?” asked Dr. Nice.

“Yes.”

“And what color is it?”

Nick looked a little puzzled and I wondered if the older man understood the question. Nick was a self-taught man with English as his second language.  Through the years he had become very fluent with no trouble conversing, but never really concerned himself with the importance of knowing every nuance of every word: spit, no matter how complex, was spit.

“What color is what?” Nick asked.

“The sputum.”

“Sputum?”

“Yes, what color is your sputum in the morning?”

“It’s cereal color.”

“Yellow?” questioned the doctor.

“Of course it’s yellow – brownish yellow – isn’t that the color of most breakfast cereals you eat in the morning?”

I wanted to laugh out loud, but I knew it was time for me to jump in once again. In my very best voice I asked, “Nick, the doctor wants to know if you cough up any phlegm in the morning?  A luggie or lunger — as your son calls them.”

“Oh!  Yes.” Nick responded.

“And what color is it?” the doctor nudged.

“Spit color.”

“Is it clear?”

“Yes.”

“Thank you, sir.  Now, moving right along…..”

“Luggie,” I was still laughing inside of myself.  My sisters and I didn’t have brothers so we had no “at home” experience with the game of lungers and luggies.  We did notice, though, that most boys we knew could cough, dislodge and spit their collected-matter projectiles at least five feet, or more, down the sidewalk.  It was agreed by all females that the display was vulgar and disgusting, but apparently it was some kind of  right-of-passage and part of guys dabbling in the crude.  We often reminded them that spitting in public was actually against the law although we never saw anyone getting arrested for the crime.  Secretly, I also believed the young men of junior high and high school age considered it to be a competition, if not an art form.

Nevertheless, being married to my Navy man the contrived words were soon added to my vocabulary, but not the art form, for which I am grateful.  In our home the complete clearing of one’s throat was a personal thing done in private.

It still is with Ken’s Alzheimer’s.  In the morning there are times when I hear a rasping, deep cough and I grab a tissue.  Holding it to my husband’s lips I ask him to “spit.” Politely he does and the phlegm — and tissue — are tossed.  However, when his mood is black and his cough is deep I can see in his eyes that either Ben or I will be punished as he plans for one of us to be an enemy target.  As he dodges my hand-held tissue I move to one side calling, “Watch out Ben.”  Ben is quick to respond stepping away while the luggie bullet ends up on the floor.  Easy cleanup and the color of spit, the evidence does serve a purpose; it’s good to know Ken’s lungs are healthy and clear.

Originally posted 2012-02-25 06:40:56.

EVERYONE IS DIFFERENT – EVEN THOSE WITH ALZHEIMER’S

 

Out Stretched Hand
Even the simple gesture of an out-stretched hand is interpreted differently by people with Alzheimer’s.

Whenever I try to compare Ken and the progress of his disease with other victims of Alzheimer’s, I find the same answer:  Everyone is different.  My friend Madalyn reminded me of that several times when I had asked about her husband Darwin at certain stages. As I read various blogs, articles and reports about Alzheimer’s I now agree wholeheartedly.  So when I look for hints to try to make life better for Ken and easier for me and Ken’s caregivers, and gleanings which I share with my readers, I keep those three words in mind: everyone is different.

AN ALZHEIMER’S COMPARISON

For example Bob DeMarco, who writes The Alzheimer’s Reading Room, has a wonderful son-caregiver relationship with his mother Dotty.  She and Ken have been on their AD journey for about the same number of years.  While Dotty is often conversational, Ken is not.  Dotty enjoys outings, Ken does not.  At times I wonder if Dotty is at a nice comfortable plateau, while Ken continues to plunge downward.

That isn’t to say he didn’t enjoy all of those things during the beginning and well into the disease.  We were still very active, visiting friends, eating out, going to the movies together — and coping with his crazy days — even the day before our life-changing accident two years ago (six years into the disease). 

My coming home after three months of convalescence found him suspicious and angry with everyone in his world – including me – someone who was now a total stranger in his house.   Nevertheless, bit by bit I tried to pick up where we had left off which was impossible as he had lost too much ground.  Better to accept what was and just go forward.  Always reading and searching I do check  the internet for help and suggestions.

ALZHEIMER’S PATIENT MIGHT SEE A HELPFUL HAND AS……..?

One of DeMarco’s suggestions in getting Dotty’s cooperation and helping to avoid the word “No” is to offer an outstretched hand – palm up – a gesture of help rather than pulling or lifting a seated patient when they need to be moved.  Good idea, I thought to myself.  For my once-very-social husband, however, the gesture meant something altogether different.  Ken would grasp the hand shaking it in a manner of vigorous friendship, adding, “I’m Ken.  Glad to meet you.”  Or, if his mood was black he might give it a good smack before he commanded, “Get out of my house.” Ben and I tried many ways to have him cooperate in getting up and out of his chair.  We encouraged him to join us in a walk, a visit to another room or come to the table for a meal; most of the time he told us “No.” Then continued to tell us “No” all the while he resisted our lifting effort.   It was a tug of war even though Ben and I always came out winners.

I do agree with Bob about too much bla, bla, bla.  Processing words for someone who has lost their conversation skills and memory must be near impossible.  However, Ken can grasp a word or two, especially when it – they – are repeated several times – slowly.  I began to notice that he responded to me saying “thank you” once he was standing and we started our short walk to wherever we were going.  A few times he asked, “For what?”

During our early marriage Ken was on everyone’s help list.  “Hey Ken, can you help me rewire my light switch? My plumbing? Move the couch? Paint the fence at the Little League Park?  Help clean the building?”  He was there for everyone, often shifting his home duties to another day to give a helping hand elsewhere.  A little annoying for a demoted wife, but pleased that he was so willing to lend a helping hand.  And always, there was a pat on the back and a zillion ways to say thank you from grateful friends and neighbors.

As caregivers, wives and loved ones of the afflicted we are always searching for ways of reaching through the beta amyloid proteins, tangles and plaques to find a connection to our special people.  Remembering how Ken responded to requests asking for help I have been using that old familiar approach.  “Ken, I need your help.”  It’s a simple phrase which I repeat several times striving to get his attention knowing all too well that he needs to hear in order to process the words.   So it is of dire importance that I make eye-to-eye contact, and then I know I have his attention. Taking his arm I can feel it relax as he cooperates with me and Ben in the standing-up process.  Immediately, I lavish him with praise, “Thank you Ken, thank you very much.”  This I repeat slowly several times. Of course, it doesn’t work every time, but I know when I have reached him because he is more relaxed and every so often he will ask, “For what?”  I answer, “For helping me.  Thank you.”  He is satisfied and more-or-less happy. So are the caregivers.

People with Alzheimer’s are different just as they were different individuals before the disease.  With Dotty, she accepts the out-stretched hand.  With Ken he responds to a request to be of help, and basks in verbal gratitude.  I would hope there are other gestures or key words to unlock the dungeon doors of loved ones with Alzheimer’s.  It might be just a matter of remembering who they were, what they liked, trying new techniques and not giving up.  Then be grateful for whatever works.

 

Originally posted 2012-02-18 04:07:19.

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