Caregivers

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.

THE TWO FACES OF JANUS AND GROUNDHOG DAY — THE MOVIE

Janus

Even without the two faces of Janus, AD caregivers often see their tomorrows filled with the repetition of their yesterdays.

It’s January again and at times I want to ask, “Didn’t we just do January?” The answer coming back would be, “No.  That was last year and 11 months have transpired in between.”  I really know that, but there was something about that first day of 2012 which brings about thoughts of Janus the Roman God of New Beginnings after whom the month was named.  Being who he was it is said that he had two faces: one looking forward and the other looking back.  While Janus probably didn’t have my caregiving assignment, or if he did he never mentioned it, I see a disheartening sameness in my life while looking in either direction.

Being able to look back is a good thing, and in that respect we are much like the mystical god, but better because we who are mentally healthy can look back without needing a second face.  We have memory and can learn from history – especially our own.  We learn from making mistakes, taking wrong turns in the road, and what works and what doesn’t.  Furthermore, we can look ahead making daily plans, and plan for the future. My problem is constantly seeing more of the same thing coming in my tomorrows as filled my yesterdays.

Suppose that by looking back and ahead we see only repetition.  I guess that’s where I was as this New Year began; living in “Groundhog Day” – the movie – without the romance.  Bill Murray’s character Phil, an angry, arrogant, conceited jerk, had to keep repeating February 2, until his attitude changed, or until he got it right.  Andie Macdowell’s Rita, the love interest, eventually helped him through his maze of repetition producing a new, reformed and lovable Phil; a delightfully funny movie which Ken and I enjoyed together long before his Alzheimer’s was even suspected.

Remembering the movie, though, I found I was identifying with Phil’s frustration of constant repetition – without the laughs.  It’s true that I’m not tied to a stockade then released to perform certain duties, but it is the repetition of those twice-daily duties from which there is no escape: getting Ken up, cleaned and ready for breakfast each morning, and getting him cleaned and ready for bed in the evening.  (It is much more complicated and emotionally wrenching than it appears in my simple sentence, but long ago I promised myself to always be discreet in my writings about my husband.)

My caregivers, wonderful though they are, cannot do these chores alone.  I am their assistant, and I know I am blessed beyond measure to have them.  I also know that having Ken home is so much better for him, and me, than placing him in a care facility. Yet, the schedule inhibits my planning a totally free day.  No matter what I’m doing I must stop at designated times and with my cell phone in a pocket I’m always on call for undesignated times, which can put a damper on my project regardless if it’s at a crucial point or not, and help the caregivers.  That’s when I feel as if I’m living in “Groundhog Day” – the movie.

Admitting to me that I dread the routine I also recognize that the dread causes a buildup of resistance in planning my day.  Recognition is a first step.  While I understand that the day will be interrupted, it’s the accepting of the interruption that is difficult – and I ask myself – why?  After all, once involved in any project we can be interrupted in anything we do; altering our focus by a phone call, a visitor, a question, or a problem with the project itself.  Then I realized those interruptions are, not only easily accepted, but often welcomed as a mini-break because they were never built into the day’s plan as a constant, as is my husband’s clean-up time.

When Ken retired we became very spontaneous, often ditching less-important, flexible plans for some fun times spent together.  I suppose that loss of spontaneity is rather debilitating adding to the lack-luster feeling of sameness.  Actually, it can be rather hellish when time offers us no opportunity for change in our life; little variety,  few surprises, no rewards, no excitement and not much in the way of looking forward.

With that in mind, and as a caregiver who has been putting break time on hold during the past Holidays, I need to move headlong into the tomorrows and make positive plans for this coming year, and I’m the only one who can do it.  Not resolutions, just plans, even sketchy plans including projects and fun, but in the doing I’ll still need to schedule those time periods to accommodate my daily duties as assistant to Ben and Crizaldo which is a must, and learn to conquer my feelings of dread and resistance.  A recent email message offered a really great motivational shove: “Life has no remote.  Get up and change it yourself.”

It is essential for my own well-being to get out more with my movie group, my lunch group, and with Madalyn where we meet at Wendy’s for a baked potato with extra sour cream, butter and no salt because periodically we deserve a two-hour, carefree lunch.  I might even plan on painting the living room.

I know I don’t have all the answers to lighten up the tedious work of caregiving and the reality of losing my husband to this cruel disease.  What I do know is that I don’t want to live my life in the sameness of “Groundhog Day” – the movie – no matter how funny it was — because even never-ending funny without any hope for change can be hellish.

Photo courtesy of http://www.flickr.com/photos/forresto/4258770494/

Originally posted 2012-01-14 03:42:41.

UNAVAILABLE: ALMOST LIKE A VACATION

hammock

Being unavailable to my caregiving responsibilities was like going on vacation.

I recently took some time off to have my gall bladder removed.  Golly, but body-part removal sounds ghoulish — even neglectful or careless although I know that isn’t true – things just happen. Furthermore, Dr. Frankenstein is not my surgeon. Replacements and repairs sound all right – like putting a new engine in a car – a pacemaker, new hip or knee replacement.  That sounds like good maintenance.  It’s the removal word that sounds menacing, discarding – like we’re throw-a-ways — like taking the car to a junk yard.

However, that comparative idiosyncrasy exists only in my imagination.  Actually, I had a good-size stone which produced some severe stabs of pain and some degree of discomfort, but never a continuing 10-on-the-chart pain, which was a good thing.  Nevertheless, a lack of urgency placed the procedure into an elective surgery category.  My surgeon’s advice:  it should be removed.  So I was faced with having a body part taken out – scary.  I mourn a tooth extraction, now I was considering the removal of this important and useful, but expendable storage/distribution organ which has been with me all of my life: a part of me.  It was time to share this news with family and allow for other opinions, and it’s times like this that I feel so alone and really miss Ken.

Years ago having one’s gall bladder removed was a major, lengthy hospital stay, long-recovery operation.  Today, using laparoscopic surgery, it’s an in-and-out ambulatory procedure requiring three small, intentionally placed slits in the upper abdomen and an interesting reconfiguration of the navel. Yet, even with family input, I debated whether I should wait for a No. 10 on the pain chart.  I conferred once again with my p.c. doctor (who believed it was warranted) my dermatologist (with whom I had a chance-same-week appointment) — she advised that I should do it — and finally I shared my hesitations with another doctor during my pre-op appointment.

I knew that it wasn’t going to get better even though many people carry a gall bladder filled with stones and never feel even a twinge. The most compelling reason for me to have it done before I was driven to consent by a siege of No. 10 pain was because I am the prime caregiver for Ken.  Everyone in the family would best be served, including me, if it wasn’t an emergency situation.  As the pre-op doctor and I were talking about my husband having Alzheimer’s one of the nurses overheard and after the doctor left, she suggested that at some time I really should get away for a rest – whether I did the surgery or not – she felt I was ready for a respite: a pause in my care-giving duties.  I assured her I was all right and that I wouldn’t consider traveling more than an hour away in case of him having an emergency.  “Then,” she said, “You should take some time off and be unavailable.”  Continuing, Nurse Nancy explained that she had cared for her mother who was a victim of AD, and her sister came periodically from out of town to relieve her.  “I never went anywhere either,” she said, “but when my sister was with my mom I was ‘unavailable.’  You’ll be surprised how refreshed you will feel.”

Following my pre-op appointment I was mentally ready for the procedure and made arrangements with our daughter, Debbie, to come from Utah to be at home with me and Ken for three weeks.  Although most of our grown children are self-employed, she is the only one who has the flexibility to bring her work with her. 

She arrived as scheduled, helped Ben while our daughter-in-law, Sabina, accompanied me to the hospital and brought me back home to my waiting bed for some R & R.  Debbie continued helping Ben and pampered me when necessary with other family members nearby as backup.  Furthermore, I happily found myself totally unavailable for anything outside of my own personal needs. 

I cannot express what an incredible sense of freedom I felt.  It isn’t that helping the caregivers with Ken is so difficult because it isn’t.  It’s just the responsibility of caregiving is relentless when done every day 365 days of the year.  Scheduling is unbroken and it’s the unbroken part that becomes not only relentless but stressful which usually goes unnoticed because it’s a silent, consistent buildup of tension.  The wise nurse knew exactly what she was talking about.

Up and about I was back checking my computer the next day.  Opening my email I found that my personal address book had been hacked and the hackers had sent out an ad under my name for weight loss.  Several of my friends sent it back with questions.  Emailing everyone on my list I stated that I had not mailed the ad, and then changed my password.  Hopefully, that will eliminate the problem of further intrusion – till next time.  Coincidentally, the timing couldn’t have been more on target lining up perfectly with my surgery, and I did see a little humor in the entire scenario.  The text read that the recipients should use the product because, as stated in my bogus testimonial, I had lost 29.2 pounds in the last 30 days.  I thought about the troublesome stone which was now gone, “It was like your father’s,” the doctor had explained, “about the size of a small egg.”  Remembering my erroneously reported weight loss, and although shedding a few pounds in never far from my personal goals, I’m sure glad my small egg didn’t weight in at the better part of 30 pounds.

You ask if I am still enjoying my recuperation.  Without a doubt, I am.  However, because I feel so good I must remind myself periodically that I am still recuperating.  Following doctor’s orders I’m not lifting heavy boxes or mowing the lawn.  Debbie and the caregivers haven’t missed a beat in Ken’s care.  Perhaps he too is appreciating a change, and I am comforted that he is well and as happy as a victim of AD can be.  From the comforts of my own home I can watch from afar yet spend time with him as a visitor, all the while making myself very unavailable for any of his needs.  If it weren’t for a few tender spots in my torso I could lose myself in a book and even pretend I was on vacation.

Photo courtsey of:  http://www.flickr.com/photos/chumpolo/511227025/

Originally posted 2011-09-11 00:02:18.

JANUARY 21, 2010

“I’ll phone you tomorrow early afternoon,” said my daughter, Julie, calling me yesterday reminding me that Ken and I had a wedding anniversary today, the 21st of January.   “There’s a new tea room uptown and we can go there for lunch depending on how Dad is doing.”   “That will be great,” I answered, thanking her for the invitation and for remembering our special day, as if she could forget.

Last year Ken was less demented than he is now, but still had little memory of us as a couple.  Nevertheless, as dinner time approached, marking our anniversary, I decided to “celebrate” by taking him to Neumanli’s, Julie’s restaurant.    He agreed that going out for dinner sounded good.  In my ever-hopeful mind I envisioned the two of us at our intimate table for two tucked in a quiet corner; the romance of us — who we had been —  pulling him into some kind of lucidity, if only for a brief time.

Of course, there was no miracle.  He wolfed down his food and asked me to take him home as his wife was probably waiting.  I explained to him that I hadn’t finished my dinner.   He was without any kind of good manners, almost like a naughty child.  When I didn’t leap up from the table to accomodate his request my “date” became so obnoxious I hurriedly ate the rest of my food, and we left before his annoying manners caused the other patrons to wish they had dined elsewhere.   Thanking Julie for dinner, I scurried him to the car declaring to myself there would be no more celebrations, nor any more attempts at celebrating.

Yet, here it was again.  That’s the trouble with special days, they keep showing up on the calendar with no escape.  I had vowed to ignore the whole thing, but somehow the longing for even a small observance of our togetherness remained so strong I became hopeful that perhaps a short outing with him would suffice for me.   However, this morning was no different from how Ken has been lately as his Alzheimer’s takes him further and further away from me, the person who loves him most in all the world.  Lately, he sleeps until noon or 1:00, gets up, eats and naps a bit on the couch, then wanders around the house in his sleepware refusing any and all suggestions.  I wonder if it’s all the rain we’ve been having that makes him so gloomy?  The days are so dark and dreary.  Seldom does he want to shave and shower or become part of the real world until around 6:00 p.m., at which time he is willing to do anything I ask, but only during a limited window of opportunity.  By then, there is only time to get him cleaned up.  Still, I wanted today to be different.  If only he had cooperated, we could have taken in a movie as well as lunch with our daughter.

Julie called at 1:00 and I told her it wasn’t going to happen, and I thanked her for the effort.  Wistfully, she said, “Happy Anniversary.”   I looked out of the window at the rain; such a gray day.  I so wanted to get out, feeling a little cabin fever after so much wetness.  Ken was content doing nothing, which is not good for him either.

At 6:30 p.m. the phone rang again.  “Hi,” said Julie.  “Can you open the front door.  It’s pouring out here and I want to make a quick run into the house.”  There she was,  still wearing her chef’s coat, taking a few stolen minutes from her restaurant and holding a tray carrying two speciality desserts zigzagged with chocolate sauce just as if we were at our intimate table for two.   Tucked under one arm a dozen long-stemmed yellow roses glistened with raindrops.  “Here,” she said, setting down the tray and handing me the bouquet, “I know it isn’t the same, but just pretend.”  I felt moisture puddle in my eyes as I put my favorite flowers in water while she visited with her father.  He may have recognized her, at least he was friendly and allowed a hug and a kiss goodbye as she dashed away.

I had already planned dinner, and now I could really pretend:  Little Caesar’s Hot-N-Ready pizza with two green salads arranged on a dinner plate looked a bit more exciting when placed next to a candle and a vase of roses, especially on the kitchen snack bar.    To add to the festivities, I filled two flute glasses from a chilled bottle of  Martinelli’s Sparkling Cider.  Ken lifted his glass as I lifted mine.  “To us,” I said.  “God bless you,” he returned.

He gobbled down his dinner, as usual, telling me that everything was very good.  I cleared the dishes and served (complimentary from the best restaurant in town) our beautiful dessert.   “Did you cook all of this,” he asked.  “Of course,” came my answer.  I suppose it was all right if I kept pretending for a while — and thank you Julie — for allowing me to celebrate one more time.

Originally posted 2010-01-22 09:56:59.

TEN A’S FOR ALZHEIMERS CARE

This gallery contains 1 photo.

Various capital 'A' letters.

These simple tips for Alzheimers Care will help you in your caregiving  tasks.

January 29, 2016 – Alzheimers Care as a whole is difficult. Caregivers have a lot on their plate. Furthermore, there is no due date on this mission of mercy. There are times when it appears to be endless as the months turn into years, and no one has an answer. According to studies on Alzheimer’s disease it can last 20 years or more. Unlike measles or mumps there is no time limit, nor will there be a scheduled time when the disease will be over.

Meanwhile, caregivers endure as best they can. Suggestions and help to me were always welcome. Though this may seem succinct, these brief descriptions offer a lot of important advice. From a booklet I have read published by the Alzheimer’s Aid Society of Northern California, “A Practical Guide For the Alzheimer Caregivers, complied by John and Bea Gorman, they have introduced ten A’s for Alzheimer’s Care. http://www.alzaid.org/BlueBook/Blue_Book_2013Complete.pdf Check it over and put to use whatever you may find helpful in your daily battle against this or any disastrous disease.

TEN “A’S” FOR ALZHEIMERS CARE

ARGUMENTS – Useless

ALLOW – as much freedom as possible.

ACTIONS – help when verbal communications fail.

ASSUME – the patient can understand you.

APPRECIATE – good moments and good days.

APPROPRIATE– activities help pass time, reduce agitation & boredom

AGITATION – can be alleviated if you stay calm, reassuring and respectful.

ADULTS – Mental level is not always equal to social level.

ADAPT – the task to fit the ability. Break tasks into steps.

ASSESSMENT – Ongoing. What is safe and works now, may not later

on. Keep watching, evaluating and be open to changes.

GIFTS FOR MOMS AND STAY-AT-HOME CAREGIVERS

warpped present

Thoughtfulness is appreciated whether one is a mother or caregiver.

 May 16 2014 — I recently read a blog by Megan Tietz directed at making  “Stay-at-home moms” happier. As I noted all of the nice things friends and family can do for these hard-working and dedicated women I couldn’t help but think about a whole bevy of women who are “Stay-at-home caregivers.”

 LOTS IN COMMON

Their jobs are similar, but more than likely the two are separated by decades.  The moms, of course, are caring for little people who can’t care for themselves.  A.D. Caregivers, who were likely stay-at-home moms spending earlier years caring for a young family are now caring for older loved ones who can’t care for themselves either.

 ALL ALONE AND SOMETIMES LONELY

 Furthermore, both jobs require a certain amount of confinement in the home (also known as cabin fever) which makes their job a bit isolated and often lonely. It’s been said from moms of small ones that their days of excitement are often topped off with a lunch of peanut butter/jelly sandwishes and the stimulating conversation of a three-year old.

 While rearing the next generation, though, moms can thrill as the children learn, grow and develop. In contrast the Alzheimer’s caregivers have no delightful or encourageing rewards. In caring for the elderly who are losing memory the experience is laced with sadness and often sorrow as the loved one slowly fades into the ghostly and lost world of Alzheimer’s.  As with rearing children, caregiving is a labor of love:  An unselfish choice made with love and devotion. Continue reading

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.

 

The Suprising Optimism of An Alzheimer’s Caregiver

This gallery contains 1 photo.

 

Lipizzaner Stallions

In reality, going to see the Lipizzaner Stallions would be impossible, but my optimistic self sometimes forgets.

WHEN KEN GETS BETTER

November 15, 2014 –  As Ken’s caregiver for the past ten years I know with certainty that he isn’t going to get better, yet sometimes even myflash- optimism surprises me.  Of course he has some days that are better than others, but in the grand scheme of life and fate my husband is deep into Alzheimer’s disease.  And yet, there are times when I do forget – not really forget – but have a flash-moment every so often when I think of his illness as simply a bad cold or some other temporary setbnack.  You remember times when you  thought of things in the future when you said to yourself, “When he/she gets better we’ll go here or there, and “He would really enjoy seeing that, or he always  said he wanted to try sushi, especially with that super hot sauce.

NATURAL FEELINGS OF OPTIMISM

 I believe it’s part of the human psyche  to be optimistic about the future and to think of times when things are better – at least things being better — if not the person.

 Recently when I have watched “Wheel Of Fortune” and the player wins a holiday at some distant exotic and exciting get-away island I think to myself.  Ken would enjoy a week there, and the flash-thought is immediately followed by, “ When he gets better we’ll have to check it out.”

 LOTS OF PLACES TO GO AND THINGS TO SEE AND DO

 Several years ago I noticed numerous TV ads for the Lipizzaner Stallion shows.  A special breed of horse which has been trained in almost ballet performances where riders and horses are spectacularly graceful together.  World famous they travel throughout Europe, Australia, Canada and the United States.  Every time the ads were shown my mind dipped and I thought Ken would really enjoy watching that show. We had often talked about getting tickets in the past, but never did.  So, when he gets better, we’ll go. These thoughts, are momentary and brief because reality quickly sets in reminding me that my husband is deep into Alzheimer’s and cannot go with me, nor can we explore the new sushi restaurant that just opened uptown.

BEING REALISTIC, BUT WITHOUT SADNESS

The poet John Greenleaf Whittier wrote, “For all sad words of tongue or pen, the saddest are these, It might have been.”

But I don’t dwell on what might have been lamenting what Ken and I cannot do any more.  I strive to recall the good times we’ve had together and offer my gratitude prayers for what has been positive rather than dwell in what was possible had Ken not slipped away into Alzheimer’s disease.  Because this is reality and this is the moment, and this is where we live right now so it would be foolish to spend time and energy lamenting what we couldn’t do and can’t control.Yet, I am certain there will be times when something exciting comes my way and my underlying optimistic flash-thought, “When Ken gets better we’ll do that,” will run through my mind because that’s who I am.

GOOFING OFF — A CAREGIVERS RESOLUTION

AN ALZHEIMER’S CAREGIVER’S RESOLUTION

Cat hiding under a blanket

A playful game of peek-a-boo with Gouda the cat helped me make a spring resolution to schedule time for “goofing off” and taking better care of me.

 

April 26, 2013 — I haven’t made New Year’s resolutions for many years, but I have decided to make a resolution this spring: to take better care of me.  As a caregiver that is often the most difficult of all tasks.  Being the first assistant to Ben and Crizaldo in caring for my Alzheimer’s husband Ken I do manage to visit friends, meet people for lunch and see some of the latest movies, but the one area which I have neglected terribly is taking care of the physical me.

 GYM TIME

 When Ken was well, especially after he retired and before AD we went to the gym and actually worked out three times a week.  Plus, he (some days coaxing me to go along) walked the dogs along the bay. Last year I managed to get to the gym all of a dozen times, if that many, although it was and is on my Monday, Wednesday and Friday to-do list.  Even though it remains at the top of my TDL the gym does manage to slip by the wayside when the list gets too long.

 At one time I also did a half-hour workout on my living room floor, but even that has been dropped from my Tuesday-Thursday-Saturday routine.  Nor have I been walking.  All of these activities have fallen into an “I don’t want to and I don’t care” bad-attitude phase.  I have asked me many times the “Why” question, but haven’t found a good answer.

 I JUST DON’T CARE

Having lunch one day with my friend Madalyn I mentioned that I really didn’t care that my car needed some TLC, even though I felt a little embarrassed about picking her up with so much grime on the outside of my reliable vehicle. 

“I just don’t care,” I apologized, and then repeated the IJDC about a few other things on the list.

“Do you know that not caring can be a sign of depression and stress,” she said.

I have always thought I had a good handle on the depression demon and actually don’t feel too stressed.  However, I must admit that I have been hampered about getting things done because I have fallen into the habit of not caring.  Thinking I would start to care again once the warm weather arrived, the days grew longer and our skies were clear and blue, it was easy to procastinate.  I was certain I would snap right back into wanting to get the car washed – and caring – but it wasn’t happening.  Perhaps Madalyn was right.  Could I kick the “I just don’t care” attitude, feel better and less stressed if I could get beyond this rebelliousness?  Possibly, but how? 

A HAPPY VISIT 

Kristina dropped by for a quick visit and to give Ken his monthly vitamin B shot.  She is a very “up” person and right now she lives her life with her secondary goal as having fun.  That doesn’t mean to say she doesn’t earn a living.  She does and enjoys her work as a caregiver for disabled people, and has been wonderful, at times, helping with her Alzheimer’s grandfather.  Right now, though, she and her boyfriend are pretty much into amusement when they aren’t working, and she mentioned looking forward to the weekend so she could goof off.

“Hummmm,” I hummed, how long has it been since I goofed off wondering if I still knew how.  Ken, before AD, knew how to goof off and was an expert.  Watching sports on TV was goofing off and visiting with the neighbors instead of cutting the lawn were two of his favorite goof off non-activities.  I’m not sure if wives were as good at this talent as are their husbands, especially if life dishes them a full plate of Alzheimer’s complete with accessorized ramifications. there lives would perk alone like the early morning brew — bubbly and strong.   I’ll have to think about resurrecting this goof-off idea.

 SILLINESS IS GOOD

Gouda the cat and I have a continuing contest over “Whose bed (chair) is this anyway?”  She either occupies my computer chair or the bed after I get up.  So far it’s a standoff.  Going in the other day to make up the bed I pulled at the covers which immediately awakened the ball-of-fur feline.  Instead of leaving her comfort zone she attacked the moving blankets.  I pulled and she dove into the exchange. “Fun,” her action declared.

My arm went under several layers of blankets for protection from her sharp, needle-point claws which were in full flight as I snaked my hand in every which direction across the bottom sheet.  She was doing what cat’s do best — chasing  a moving object.  I reacted with full participation – always guarding against Gouda’s prowess skills and weapons which now included teeth and her back feet.  Bounding here and there she was all over the “map.” My armored arm, hand and fingers became her prey as she challenged them from on top of the swathed surface.  After several minutes I said to myself, “Good grief, I’m playing with the cat.”  Do you suppose that could be considered goofing off?  Playing?  Wasting time?  Indulging in nonsense?  If that’s what it’s called – then this could be the start of something big.  I’ll put that on my to-do list: schedule goof-off time — ten minutes to play with the cat — well, maybe at least five.

ALZHEIMER’S AND BUDDY

lonely desert road

A lonely stretch of desert highway similar to where Buddy had his accident

 

For the most part I dislike nicknames.  When I met Ken he was introduced to me as “Bud.”  Bud, I thought, he doesn’t look like a Bud.  Actually, I didn’t even know what a Bud was supposed to look like.  Perhaps someone small, around seven with no front teeth, but this Bud had his teeth and was over six feet, and rather handsome.  I just knew I didn’t like the name, Bud.  In making further conversation he mentioned that his uncles back in Colorado liked to call him Buckshot.

NICKNAMES GALORE

Ugh, that was worse than Bud was my second thought: “Buckshot?  Why?”

“Just nicknames,” he continued.

“Do you have a real name,” I questioned?

“Ken,” he answered.  “My full name is Kenneth Richard Romick,” but most everyone calls me Bud.  All of my life I have been Bud, and my sister Loretta has been Sis.”

“Do you mind if I call you Ken,” I asked. Continue reading

Sign-up For Our Newsletter

Sign-up for our free newsletter and receive expert tips from Ann Romick, a woman who has cared for 4 different family members with Alzheimer's over a span of 30 years. Be the first to get notification of her forthcoming book, Journey Into the Fog, based on her experiences.

We respect your email privacy

Email Marketing by AWeber