Caregiver

THE LIES WE TELL

“Everyone went home.”  That’s one of my stock lies.  Depending on the time of day, Ken has pretty much programmed himself with certain questions, various fixations and anger moods.  First thing in the morning he comes from the bedroom yawning and asks, “Where is everybody?”  My answer is always, “They went to work.”  Then he wonders what day it is, and if it’s a weekday he agrees that, of course, they do need to be at work.  On the weekends, if he asks about the day, I tell him they are working overtime, or say it’s a weekday.

In the evening when he asks, “Where did they go?”  That’s when I tell him, “They all went home.”  I go further to explain that all of our children are grown and have families of their own and they don’t want to stay for dinner because dinner is waiting for them at their own homes.  “Oh,” he replies.  Often he asks about the little ones, assuming we have been baby sitting.  “Their parents came and picked them up.”  That, at times, annoys him because no one came in to say goodbye.

“I have people coming for dinner,” Ken insists.  In the beginning, I would make an effort to convince him that we were not having company only to have  him go into a heated debate about the guests he had invited and why wasn’t I making enough food.  I have learned to suggest that when they get here I’ll cook another dinner.  “Meanwhile,” I say, “I will be cooking for just the two of us.”  He is happy with that and soon forgets about the imaginary company.

Lies aren’t always about food, company or the whereabouts of people who aren’t here.  At times I lie to avoid a hurtful truth.  Ken’s mother was also an AD victim.  Ken, his sister, Loretta, and I conferred about her bladder cancer, and her growing dementia.  It was decided that following surgery and convalescence, their mother would be transferred to a full-time, partial-care facility.  A widow and alone, Rose had managed with Loretta close by, but as illness, both physical and mental, became a part of the mix, she needed more supervision that any of us could provide.

Surgery went well and Rose happily adjusted to her new living situation, but that glimmer and desire of home remained.  Loretta and I were visiting one day when Rose asked, “When do I get to go home?”  In great detail Loretta explained to her demented mother all about her illness, her incapacity to care for herself and that her home had been emptied and was rented.  Saying nothing, but with great sad eyes, Rose looked puzzled and hurt.  A whisper away, I quietly said, “Lor-ettttt-ta.” Glancing back at me she said, “I just want to be honest with her.   I mumbled, “Why?”  When Rose had asked me the same question, which she did each time we visited, I would tell her that as soon as her doctor said she was strong and capable enough to care for herself, she could go home.  I suppose, by a very big stretch, it wasn’t a lie, but it made her feel good, if only for a little while, and it was a more comforting answer than the awful truth.

The scriptures tell us, “and liars shall be cast out.”  In his Alzheimer’s world Ken will say, “I haven’t heard from my mother lately.”  He doesn’t accept the truth, so I tell him, “She and your father are on vacation in Colorado.”  I have become very quick with the answers.  For instance, I sewed the front pockets down on all of his jeans so he couldn’t walk around with both hands deep inside.  I knew if he fell he would be flat on his face.  Thrusting his hands downward while groping for the pockets of his altered jeans, I tell him that having no pockets in front is the latest style.  Flat-out lie!  At times I feel a tad of guilt for my constant lies, which come so easy in our conversations, but on second thought I could call my deceptions in dealing with Ken’s demented mind — fabrication.  Yes, that’s it.  All day long I fabricate, or better yet, perhaps I’m just speaking fiction.

Originally posted 2009-10-04 06:31:18.

HAPPY ANNIVERSARY

It’s January 21, 2009 which is Ken’s and my wedding anniversary.  During the day he took turns being any one of his three personalities — as usual. Some time around 4:00 he seemed to be Ken so I asked if he would like to go for dinner and, perhaps, a movie to celebrate our anniversary.  He looked at me with a questioning smile then asked,  “When did that happen?”  “A long time ago,” I answered, but mention food and he is ready to go.

We went to a small, intimate restaurant owned by our daughter, Julie, which during these economic times is struggling to stay open.  We sat in what has become my favorite corner and ordered dinner — a small dinner.  He becomes agitated when he has to wait very long for anything.  Usually we have been going to some fast food places where he gets instant food.  Even before our meal arrived he became Mr. Hyde and wanted to hurry because he had to get home for his wife who should be home from work.  I rushed as much as I could, considering it was hot soup, telling him we would leave as soon as I finished my dinner.  He began pacing around the restaurant and I could see that he was becoming agitated.  Rather than have him bother the other customers, I decided it best to leave.   Asking for the check our server said it had been taken care of.  Leaving a tip on the table I picked up my coat and purse and peeked into the kitchen saying,  “Thanks for dinner, Julie.”   “Happy anniversary,” she sighed, and we left.

Son-in-law Tim caught us as we were driving out of the parking lot.  “I thought you were going to hang for a little while,” he said.  “No,” I replied.  “Ken has to get home to find his wife.  I came with my husband, but shortly after we arrived the evening turned into a real bummer of a blind date.”   Try a little humor, I thought, to cover the pain.  We said our good evenings and I drove home.  I cried all the way.  Ken didn’t notice.

Foolish woman, I thought to myself.  I knew better.  What did I expect?  Perhaps a miracle — a lucid evening — when he would remember who we were and our life together.  It didn’t happen.  Of course not.  After five years, his Alzheimer’s is well advanced.   On his blog, Dr. David, mentioned “a rotting mind.”   I have called it the same thing and it might as well be as there are hardly any reference points remaining; just a mass of tangles and plaque.   It’s almost as if my husband has died and I’m taking care of  what’s left.   However, I know  I am fortunate that I can still care for him at home.  I just won’t plan — or expect — any romantic evenings with my husband.  But every so often, when the sun is bright,  he will remember just a little and ask, “You know what?”  “What?” I answer.  “I love you.”  It’s not an evening out, nor will it fill the whole day, but for a moment I have my husband back.

Originally posted 2009-01-30 06:14:02.

Profile of a nurse pushing a man in a wheel chair.

A profile of a good caregiver has many aspects.

A CALLING AND A CHOICE

March 18, 2016 – There really isn’t a profile of the perfect Alzheimer’s caregiver. Instead it seems to be a calling that someone steps up to and takes. Someone just like you or just like me. The profile shows many, but not all, caregivers are often a child of the person who is in need of caring services. Gender stats also show that the caregiver is usually a woman. Not to imply that men are not capable of looking after mom and dad, it’s just unusual. That’s understandable as women are quickly associated to “mothering” or “nurturing” as part of their natural-born talents that appear to be inherent to their sex. That summation is not meant, in any way, to be biased against men. Just as there are “Stay-at-home dads.” men who take care of the home and children, usually with the career wife’s blessings, these same dads will often be tomorrow’s caregivers when their parents are in need of a role-reversal.

LOVE IS ALWAYS PART OF THE PROFILE

One of the men who helped me care for my husband Ken, Crizaldo, believed that caregiving is a “calling.” He was a relief for Ben and later David, who was with Ken six days of the week. Crizaldo’s full-time job was working in a care facility where he was responsible for several of the residents. There were times when he and I talked about caregiving. Crizaldo mentioned that some people just should never be caregivers. In a profile description he found that to be good at what you do, you have to love people. Dedication went beyond just a job. At work good caregivers needed to be sure their patients remained as comfortable and as happy as possible; treating them as you would one of your own loved family members. Crizaldo mentioned that he noticed that some of the employees were obvious in their lack of dedication in what they did. They put in their time and that was it.

BASIC EXPECTATIONS THAT ARE PART OF THE PROFILE

My husband’s caregivers were always in the former profile. For a long while I was their assistant, the backup person helping with showers, dressing, and all the other duties that belong to the “calling.” Fortunately, the men were responsible for shaving, hair combing, keeping him clean while eating, changing dressings if there were wounds to care for and changing diapers when necessary. When he was calm and in a good mood I managed to cut his hair as I had done since he retired. Ken’s wardrobe was kept simple for the caregiver’s convenience and for Ken’s comfort. Sweat pants and sweat shirts were always the order of the day unless there was a hot spell. During those times adjustments were made.

Caregivers were also available to help Ken into a wheelchair and into the car for doctor’s appointments or any excursions, which were limited especially as the disease progressed. These men also included simple cooking for the patient and light housekeeping.

HOW DO YOU FIND A GOOD CAREGIVER?

Finding someone to fit this profile and do it with the attitude of love and service I was looking for, was not an easy task. Our first caregivers came from an agency and were a disaster, though I know that has worked for others. We then went through an employment service that was part of our church. It’s always important to contact former employers  familiar with their work. Eventually they even recommended each other. The main focus in caring for patients, especially patients with some sort of dementia, is to remember that they can’t help themselves, but we can help them, remembering always that this is a labor of love. As a family we grew to love these good men and all they contributed to easing our burden of care. Their profile of love and service set a high standard of caregiving that would be difficult to duplicate. 

Originally posted 2016-03-19 19:59:51.

woman studying her lessons

My work as an Alzheimer’s caregiver gave me many lessons in life.

March 10, 2016 – Life is full of lessons and my experiences as an Alzheimer’s caregiver have been a good teacher.  I have mentioned in my past writings that my husband Ken is my fourth Alzheimer’s patient. My first patients were Ken’s mother and father, Overlapping their illnesses my mother began showing signs of dementia, eventually becoming Alzheimer’s. With the demise of our parents (my father was never a victim of AD) I remember looking Heavenward and silently asking, “Have I learned enough?” Apparently not. The journey with my husband was still to come. Certainly, not wishing such a horror on anyone, I saw small signs of confusion, forgetfulness and personality changes as early as the last half of the 1990s. Even though I knew AD was coming I still wasn’t prepared for my mate, my best friend, my love, the father of my children, my husband to go through those awful stages: a rotting mind, and eventually his complete memory loss of our family members and the love of not only his treasured grandchildren, but the next generation of great grandchildren.

Continue reading

Originally posted 2016-03-12 19:58:05.

TEN A’S FOR ALZHEIMERS CARE

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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.

Originally posted 2016-01-30 18:32:32.

WHAT AM I? INVISIBLE?

care-giving granddaughter and grandfather with alzheimers

Helping Grandma care for Grandpa who suffered from severe Alzheimer’s was a challenge for Kristina, but one she learned to handle well.

November 28, 2015 — Whether while I’m caregiving or during other times in my life I’ve wondered if I was invisible. Waiting in line, perhaps in the bank and or while shopping during the holidays, when they open registers or windows with someone directing others to step forward in what should be my place, and I just keep waiting,  It’s then that I might ask another person patiently waiting behind me  if he/she can see me because I am certain I must be invisible. Then the stranger assures me that I’m not made of smoke and mirrors. If you are a caregiver, however, you may have that feeling much of the time. In a world filled with busy people who appear to have important things to do, caregivers are often overlooked to the point of feeling invisible.


 

RECOGNITION AND LEGION

In the November 2015 issue of AARP Magazine, a team of photographers and writers have made a presentation titled “A Day In The Life of The American Caregiver.” The article explains how when a catastrophic injury or shocking diagnosis occurs, the person who steps up to help is given a new title. Like it or not, that person becomes a caregiver.  While no one competes for the title and may not even consider themselves in that role they have become a caregiver. To most of us helping is just a part of life, making small contributions in a quiet and simple manner, this silent army is often overlooked.

Stats tell it all. In the United States about 40 million people provide unpaid care to an ill or disabled adult. Furthermore, these angels of mercy have been doing this service for five years or longer, more often than not they are doing it alone.

The AARP team visited caregivers of eight families across the nation, who provide care for a loved one. Stats tell even more: 16.6% of Americans provide unpaid care that would cost $470 billion annually. The amount of dollars not spent is staggering, but these caregiving duties continue day after day for these unpaid angels.  One caregiver from Wisconsin cares for both of her parents who have been divorced for more than 40 years. Under their daughter’s devoted care the two once-sparing partners get along just fine. She tells the world that it has been a period of forgiveness and healing That’s one of the joys derived when one is a caregiver.

In Palm Springs, California one woman cares for her partner following a stroke. “I live with a child some days,” she says. In Florida a woman and her husband rented a room to a former choreographer. The three became close friends, so close that the husband kidded that he wanted to adopt the younger man and write him off on their income tax. When the husband died, the “son” moved in with his “mom” friend. “He keeps me company,” she says, “and I’m here to take care of him and his COPD.”

THEN THERE IS LONG-TERM CAREGIVING

The mother of a young man who suffers from Down Syndrome  says, “It would take more energy to figure out how not to do this. He needs steady supervision to stay safe. He knows there are bad things out there, but he doesn’t know that they can happen to him.” She’s a feisty 80-year-old mother from Wichita, Kansas who recently returned from a vacation to her native India with her son. She says, “I can’t get tired of caregiving. That is not an option.”

Long-term caregiving isn’t always a parent-child situation. Many times a dementia-related illness can go on for years. One of my friends took care of her A.D. husband for more than 10 years. My husband, Ken’s illness was full-blown Alzheimer’s and it was more than 10 years from diagnosis. If I counted back into the 1990s when I first saw signs of his family disease, the total would be closer to 20 years.

A MOTTO FOR CAREGIVERS

I suppose one could be, “Hang in There,” which usually goes without saying. The important thing, though, to keep in mind is: “They can’t help what they do, so it’s our job to help them.”

Originally posted 2015-11-30 07:33:15.

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

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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.

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