caregiving

AN ALZHEIMER’S LOVE STORY – AND BEYOND

Man and woman in a canoe.

Borrowed from a Facebook post. Love the quote attached to it.

March 15, 2013 — Every so often we run across a story that touches our heart in many ways.  I have a lot of friends on Facebook; that social media thing which could command much of our time if allowed, but today I am pleased to have skimmed through and found my cousin Sara had added an Alzheimer’s video to my page, a story about an older male  caregiver, responsible  for his sweet wife.  I stopped and watched “Bill and Glad: a love story.” Continue reading

Originally posted 2013-03-16 21:44:11.

TONS OF TATTOOS AND ALZHEIMER’S

January 18, 2013 — Disclaimer up front:  Tattoos have nothing to do with Alzheimer’s.  However, Ken does have both.  Not tons of tattoos, but more than the average sailor from WWII.  He also continues his journey into the dense fog of dementia’s number one disease.

tattoo on shoulder

After just one tattoo Ken’s mom made him promise, “no more.”  16 tattoos later he obeyed.

A few evenings ago as I sat on the couch next to Ken’s bed watching Wheel of Fortune while my husband, having completed another day in his battle with AD, settled in for a good night’s sleep.  He turned a little, raised one arm high into the air, pulled at his sleeve until it fell past the elbow, and then scratched where it itched.  I glanced over to make sure he didn’t need anything more for his comfort.  In doing so, my eyes drifted to the array of pictures covering the  aging skin of his arm, and I thought of our third meeting (not a date) at my company picnic.

Ken didn’t work there, but our mutual friend Jim did and invited him to come along.  The men, already relaxed after a few beers in the sun, were tossing around a football on a nearby lawn.  Off to the side a pile of sports shirts grew as the players threw off their superfluous clothing in favor of either bare chests or white tees with a crew neck.  Good grief, I thought to myself, both of Ken’s arms are covered with tattoos. I did not know about his tattoos before the picnic and the discovery reminded me that I hated the ugly markings with  an unbelievable passion. Continue reading

Originally posted 2013-01-19 08:02:18.

RIDES AT THE ALZHEIMER’S CARNIVAL

THE ALZHEIMER’S HALL OF MIRRORS 

fun house mirror

Sometimes caring for a person with Alzheimer’s can be like living in a house of mirrors.

December 7, 2012 – Like attractions at a carnival, Alzheimer’s can take many forms on its journey through the brain. With Ken’s parents, Rose and Nick, we were groping as was the medical community.  No one could give us directions, or suggest how to cope with any kind of dementia.  Even if they did we still had no idea where we were going or what to do.  I suppose we could call that 1970s first ride with Alzheimer’s “The Shadows” as we felt our way in and out of a maze leading us blindly into a the hall of mirrors where life as we had known it wasn’t making sense.

GROPING THROUGH THE ILLUSIONS  

I don’t recall anyone saying the words, “Your mother – father – has Alzheimer’s.”  It was either confusion, getting older and forgetting, senile or second childhood.  Not knowing what to do with no particular medical advice caring for them was continual trial and error.

Both had lost their creative interests.  Nick no longer cared for gardening and she forgot how to knit, sew and crochet.  Rose was able to cook a simple meal and keep her home tidy.  All else: shopping, doctor’s appointments, personal needs were done by either me, Ken or, if she were free, Ken’s sister.  Nick was fairly placid except when challenged or asked to do something he didn’t want to do, then he could become withdrawn, stubborn and/or combative.  All the while the family stumbled blindly through caregiving. Continue reading

Originally posted 2012-12-08 12:39:17.

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.

ALZHEIMER’S AND THE OTHER WOMAN

 

Affairs, rather real or imagined wreck havoc with the pysche of an Alzheimer’s caregiver.

 October 19, 2012 — I have read that it isn’t unusual for older people with dementia or Alzheimer’s in the earlier stages to forget their spouse – especially if they live in a care facility with a lot of new people with whom they become acquainted. The Alzheimer’s affair can be tragic to the well spouse, or it can be a source of happiness for someone with Alzheimer’s searching for love and companionship in a confusing world.

 “He met someone,” a broken-hearted healthy wife will say to a friend.  In this case she has lost her husband twice: to Alzheimer’s and then to another woman. The Alzheimer’s World is not our world even though we have one foot in the door nearly all of the time.  Our loved ones can become strangers to us, and us to them as they embrace their new life in an institution.  Their world with us can vanish and what remains for them is what is readily available which might be the man or woman in the next room.  

When her husband with Alzheimer’s became involved with a woman he met in the facility where he resided,  former Associate Justice, Sandra Day O’Conner, following a painful period of adjustment, responded she was relieved because her husband had found some happiness.

At that point in time there is really nothing for the wife or husband and family to do than allow what has happened to just continue.  Changing the mind of an AD patient is next to impossible.  The connecting link to the well spouse is gone. Besides, the happiness of the AD spouse is what is paramount.  Furthermore, living and caring in an Alzheimer’s world is often surreal and often feels like make-believe and roll playing. What happens to not only the patient, but for the spouse as well can seem like a dream — or worse — a nightmare.  Continue reading

Originally posted 2012-10-20 15:38:00.

ALZHEIMER’S AND ROSIE’S DENTAL DILEMA

September 21, 2012 — My mother-in-law, Rose, was one of the fortunate ones when it came to teeth: strong, straight

dentist working on woman

Despite strong healthy teeth and frequent dental exams, some people with Azheimer’s end up with dentures, another problem for caregivers to deal with.

and cavity free.  As my dentist Dr. T. had explained she was blessed with the good saliva that worked to keep the bacteria from making inroads — cavities — in her teeth.  However, as she neared 50 all of her teeth were extracted due to gum disease – like my dad who I wrote about previously.

LEARNING DENTAL HYGIENE

Ken’s father, Nick, managed to keep all of his pearly whites with only one missing when he died.  That was quite an accomplishment for someone born in 1892.  As a poor immigrant boy of 14 who came to America during the 1906 immigrant rush Nick was unfamiliar with the word, use or sight of a toothbrush.  Joining the U. S. Marines ten years later the Corps soon taught their new recruit the meaning of hygiene in all aspects.  So for Nick, even in his later years of Alzheimer’s, lucked out in the dental department. Continue reading

Originally posted 2012-09-22 07:03:26.

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.

LIVING IN THEIR COMFORT ZONE

Romick Family 68

The Romick family, long before anyone thought of Alzheimer’s.

August 11, 2012 — So much has been written about family participation in helping with an Alzheimer’s patient.  From what I have read the percentage of those willing to help and those willing to watch is way out of balance.  I don’t have the statistics; furthermore I doubt there are any truly accurate stats because involvement in caregiving is such a personal family issue.  However, I would venture to say that the numbers of those willing to watch are far greater than those willing to help.

FAMILY PARTICIPATION

Perhaps, the approach is all wrong from the beginning.  One article I read was a synopsis of a study done by Steven Zarit, a professor and head of the Department of Human Development and Family Studies at Penn State.  The study’s main focus was communication between the family and the person with dementia.  This, I imagine, would be done soon after diagnosis and when the victim was able to communicate his or her wishes.  The study group’s consensus was that communication is either poor or non-existent between family members and the relative suffering from dementia or Alzheimer’s disease; the problem mainly resulting from a difference in understanding the core values held by everyone, including the victim, about giving and receiving care:  The core values being autonomy, burden, control, family and safety. Continue reading

Originally posted 2012-08-11 20:14:32.

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.

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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