Caregiver

ENTERING THE ALZHEIMER’S WORLD

THE ALZHEIMER’S WORLD MARCHES ON

April 24, 2015No matter who, Alzheimer’s appears to be

unraveling mind

The slowly unraveling mind is an everyday part of the Alzheimer’s World.

waiting for it’s next victim striking at friends, neighbors and family. As my husbands former caregiver – he passed in October 2014 – it would seem that not a day goes by but I don’t hear of another person entering the Alzheimer’s world, another diagnosed case of AD causing untold grief to another family. This time it’s the father of one of my young friends. Continue reading

Originally posted 2015-04-28 06:28:48.

CAREGIVING AND OUTSIDE HELP

This gallery contains 1 photo.

Woman doing dishing by hand.

A kitchen is never big enough for two women.

A KITCHEN IS NEVER BIG ENOUGH FOR TWO WOMEN

February 20, 2015 – Often when there s a need for assistance in caring for a loved one  family members need to  turn to outside help; remembering always that this means an adjustment for all concerned. My mother used to say that no one could ever build a kitchen big enough for two women. She then related a family story about her sister.

Mama’s brother-in-law and a good friend agreed to manage a piece of farm land in the Sacramento Valley of California for one of their former employers. Everything was provided in the way of farm equipment, tools and supplies. All the men had to do was make it work. The glitch in the whole agreement was that there was a large 10 room Victorian house with a full basement that would house the two families. To meet personal expenses a generous monthly salary was also provided. Continue reading

Originally posted 2015-02-22 00:07:54.

YOU MIGHT BE A CAREGIVER

Question marks

If these situations sound familiar, then you’re probably a caregiver

ARE YOU A CAREGIVER?

Recently on Bob DeMarco’s Alzheimer’s Reading Room  I read a post by Jeff Foxworthy about the possibility that “you might be a caregiver.”  From what he tells us, he already is.  Not only were his notes humorous, but many of the comments that followed were equally funny or applicable —  especially those where other caregivers relate.

WHO ARE CAREGIVERS?

I think of caregivers as those persons who care for others who are infirmed in one way or another.  For so many of us we care for loved ones or others who have Alzheimer’s disease. However, there are caregivers who extend themselves to all sorts of illnesses and disabilities.  Yes.  We are all caregivers.

The total definition includes caregiving from hundreds of miles away relaying instructions via email, phone conversations and any other way that communicates  between the patient and/or other concerned individuals who actually do what needs to be done at the patient’s home or elsewhere.   Caregivers can also be those who have placed their loved one in a care facility and makes sure the bills are paid.  Hoever, the caregiving that I am most familiar with is “HANDS-ON CAREGIVING.”  Apparently, Foxworthy falls into that catagory with his opening statement:

HANDS-ON CAREGIVING

“Did you ever try to hold a door open with your butt, and then push a wheelchair through it? You might be a caregiver.”  Now for me, that defines a “hands-on caregiver.”  From that point on the comments from readers which followed totally defined those hard-working-hands-on caregivers who are often on duty 24/7.  Their comments I’ll paraphrase and include some of my own and from friends who have been caregivers.

LAUGHS FOR LATER

Sheila cleaned the bathroom floor eliminating the slip and slide after her loved one experienced an explosive diarrhea episode.  Sound familiar to anyone?

My mother-in-law hid valuables.  Before she and my father-in-law agreed to direct deposit, she would hide their SS checks.  When I arrived to take the two of them to the bank we had to find the checks.  “What are we looking for?”  Rose constantly asked as we rummaged through drawers, closets and cabinets.  Repeating over and over what we were hunting for and why, I finally found the checks hidden between the folds of the sheets in the linen closet.  The helpful thing about that hiding place was I always looked there first.   They do the hiding and the caregiver seeks.If you have played hide and seek, you might be a caregiver.

Cleaning out their desk which was stuffed with odds and ends of mostly worthless papers I found a refund check from their insurance company which had never been cashed and squirreled away for safety. Fortunately, the company was happy to send a replacement which went straight to the bank.

Amber told of her loved one holding the remote next to his ear calling out, “Hello, hello.”  For me my Ken put our remote in our office claiming it was one of his engineering tools.

If you know the best deals when buying adult diapers, or if you’ve pounded your pillow with your fist and cried in the shower,you might be a caregiver.

If you find youself doing chores: mopping, dusting, cleaning while the loved one catnaps, you must be a caregiver. If there are times you think you’re living in the Twilight Zone,  and you yearn for a small, smidgen of privacy it’s normal. Heather closed her comment with “If you are a multi-tasking bad-ass, you might be a caregiver.  Hang in there caregivers.”

If you hand the phone to your loved one when you know it’s a telemarketer, you are a caregiver with a sense of humor, and it’s humor that gets us through sad and often miserable times. Without humor life becomes much too serious and often unbearable.

AD victim Nick was convinced that the Ace in a deck of cards was worth $15.00.  With his found Ace he paid for his haircut and told his bewildered barber to keep the change.

IT’S THE DISEASE

Believing that I was an intruder in his home, my Alzheimer’s-stricken husband insisted that I leave.  “But I live here,” I tried to convince him.  “Then show me your rental agreement.” he demanded.

My mother verbally tossed my father out of their room when she said, “Get out of here sir, I am not that kind of girl!”  He left and slept in another room, but was so hurt by the rejection that he told me he would never go back.  He didn’t.  Azheimer’s does that between loved ones even though we, with our clear- thinking and understanding minds know that the illness is speaking not a loving wife of 70 years.

A person signed into Foxworthy’s short blog as Scribe and  summed it up with a lovely and poignant thought “But in that little shadow of the absurd is lurking a grimace, and we know that our loved one would walk through fire rather than deliberately put us through these tough times.  Yes!  Remember that over and over.  They can’t help it, but we can help them.”

If you can relate, especially as a “Hands-on caregiver,” then we, your fellow HO caregivers cheer and salute you.

Originally posted 2014-01-12 18:34:33.

ALZHEIMER’S, COUSINS AND THE GOOD SISTER

September 20, 2013 — Sara is the middle child of five.  Her mother was the sister of my mother, Irene, who suffered from Alzheimer’s disease.  Sara’s mother Louise was not a victim.  In this early 20th-century family there were ten children: six girls and four boys.  Two of the women, in their older years, were victims of AD and two of the men – this we know.  Some of the siblings died early from other causes.  Whether a form of dementia may have happened had they lived a full life is anyone’s guess.

An ALZHEIMER’S FAMILY HISTORY 

In her late years, the mother of these children became a little confused and stubborn, but appeared to have good control over most of her mental abilities.  The father died in his early 50s with pernicious anemia.  Could he possibly have been the carrier of an Alzheimer’s gene?  The family will never know?  So far, though, none of the cousins have Alzheimer’s or other dementia, but at times we worry. Continue reading

Originally posted 2013-09-20 23:55:23.

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.

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.

Originally posted 2013-04-27 12:08:07.

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.

Alzheimer’s At The Church Christmas Social

THE ANNUAL CHURCH CHRISTMAS SUPPER

Boy at Christmas dinner with a menu of cookies

This little guy chose his own dinner at the Christmas party, typical of kids his age and okay at this once a year event.

December 14, 2012 — We were always there whether they served ham, turkey or roast beef — all with mashed potatoes, gravy, lots of salads and the customary green bean casserole. It was almost tradition that early or mid-month in December we read the announcement, complete with a sign-up sheet requesting side dishes and desserts for the annual Christmas dinner to be held in the rec hall – a real gymnasium with basketball hoops at either end — but more formerly referred to as the church cultural hall. During those early years when Ken and I were young, with five little ones, our family took up nearly a whole table. Then as our nest emptied and we dwindled back to just the two of us we still attended most of these pre-Christmas celebrations at our church sitting with friends who had also become empty-nesters. Continue reading

Originally posted 2012-12-17 05:07:45.

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.

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