WHAT AM I? INVISIBLE?
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 your place, and you just keep waiting, It’s then that you might ask another person patiently waiting behind you if he/she can see you because you are certain you must be invisible. Then the stranger assures me that you’re 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 from these unpaid angels. One caregiver from Wisconsin cares for both of her parents who have been divorced for over 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’s help what they do, but it is our job to help them.”
1620 — WHEN IT ALL BEGAN
November 20, 2015 — From our early days in elementary school we should recall from those long-ago history books all about the first Thanksgiving where the Pilgrims and the Indians celebrated a meal together, giving thanks for their blessings. The Pilgrims, of course gave thanks for their safe voyage, food to eat, shelter from the cold and the new friends they made with the local residents. The Indians: not too sure if they felt gratitude for this intrusion. Perhaps for a good meal, the new friends who at that time, were non-threatening and appeared to be content just settling in and making homes for themselves. Just a little whimsy here putting myself back in 1620, and as a local, wondering, “What’s up with these strange pale-faced people?”
BACK TO THE 20TH CENTURY
That’s where I lived a good portion of my years with Mom and Dad and my two sisters. I was terribly shy, and was one of those little ones who often clung to her mother’s skirt and whispered my question or request into her ever-attentive ear.
We had been invited to a relative’s home for Thanksgiving dinner, and of course my sisters and I sat at the “kids” table. Finishing my plate I wanted some more potatoes and gravy. I pushed my chair back, wiggled into the space between the two tables and found Mom. As I passed Dad I must have bumped his arm and he spilled his water. “What are you doing?” he grumbled. “I want to talk with Mama,” I replied. “What is it?” she asked patiently. “May I have more potatoes and gravy?” I whimpered. She filled my plate, Dad forgot his spilled water but said, “Now go back, sit down and eat your dinner.”
ALL GROWN UP WITH A FAMILY OF MY OWN
Becoming an adult I outgrew my shy nature, and it appeared that none of my children inherited that painful trait, but one of my girls had her own issue. That was with the “kids’ table.” I guess somewhere around 12 many young women feel they would rather sit with the adults than with the children. As I was setting the table, she looked wistfully at me and asked, “Do I have to sit at the kids’ table?” I nodded a definite “yes” and her tears began to flow. “I’m sorry, honey,” I tried to explain, “but there just isn’t room at the adult table.” “I’m never going to have a kids’ table,” she bristled, brushing away the tears. She didn’t cause her dad to spill his water, but I knew instantly that her Thanksgiving day was spoiled.
Years ago I read a delightful post in the newspaper by Erma Brombeck about the “kids’ table.” and how her children accepted their permanent seat until some older relative couldn’t be there, or had died making room for a graduation ceremony.
KIDS TABLE CONTINUES
I’ve noticed that even at her home with it’s expanding dining room table my daughter still has a “kids’ table” in the kitchen. However this new crop of kids seem to enjoy it more than eating at the stuffy and boring table with the adults in the dining room. I’m happy and relieved that the cousins enjoy one another and are content with the seating arrangement, and could be themselves. Makes me wonder, though, if they had a “kids’ table” in 1620 filled with small Pilgrim girls and boys and their Indian friends. I hope they did. I also wonder if they shot corn and peas at one another. (Volunteered confession and information about gross kids behavior from one of my own adult children now sitting at the table for grown-ups.) What else could explain all the giggling that came from one of those infamous “kids” tables?
WHAT MORE CAN I SAY
November 16, 2015 — While the world reels in shock, and leaders and clergy speak of the unspeakable which recently took place in Paris, there aren’t too many words left to express our feelings of outrage and disgust that we feel when something so horrific happens to our world family wherever they may live in our continually shrinking universe.
OUR FIRST ALLY
There are times when we forget that France was our first ally. They were there for us in 1776 when the 13 colonies struggled against the British Empire for independence and freedom. Then, of course, there was the gift from the people of France to this new nation; the Statue of Liberty. Nor should we forget that they were with us on 9/11 when they announced that day. “We are all Americans” as their condolences and tribute to us that September as this nation suffered its own atrocity while we watched New York City’s beloved landmarks, the Twin Towers of The World Trade Center, burn and fall helplessly to the ground.
WHEN CITIZENS BECOME VETERANS
As we recently gave thanks to our Veterans, we can also think of our citizens of 9/11, and the citizens of France, as veterans. All those who experienced the terror of war first hand, including they who lost their lives in these senseless acts of violence against humanity. The main difference between them and enlisted or veteran military, who freely offered their lives for a just cause is that citizen-veterans did not have the choice to be maimed or killed when the mere chance of being in the wrong place at the wrong time put them in harm’s way. With terrorism as the cowardly enemy, these innocent, unsuspecting veteran-citizens have had their lives ripped from their wounded and broken bodies by crazed, demented radicals who care little for humanity or human life. Unfortunately, as we here in America already know, this kind of insanity can happen anywhere.
Yet, we find the brave determination of these veteran-citizens of France vowing that they will not be bullied. They will continue to live their lives as they have before. Just as our courageous 9/11 citizen-veterans did following their time of terror, they pick up the painful pieces and go on, constantly striving for normal through the chaos of tragedy. And while they fight the injustice of terror with bravery and determination, we as world citizens, when something horrific happens to our brothers and sisters, wherever they may live in our crazed and confused world, we respond with faith and prayer, believing that it is through our Lord Jesus Christ that all healing comes.
THE ALZHEIMER’S CONUNDRUM, GET READY AND GO? OR JUST GO!
November 6, 2015 – “I can get ready, or I can go, but I can’t get ready and go” was one of my mother’s favorite phrases as her Alzheimer’s continued to limit her once endless activities. It was during the last few weeks of living in their beautiful country home in Sonoma County, California. I was there to pack their house and be ready for the rest of the family who would arrive when I said “Ready, get set, go.” At that point the family would show up with trucks in all sizes, shapes and capacities. Once everything was loaded and we began a caravan it all looked like a scene from the movie “Grapes of Wrath,” especially with the borrowed cattle truck bulging with boxes and various pieces of furniture.
But while I was working in getting the place packed I suggested that we clean up and go to Occidental, a tiny little town nearby, famous for their delicious Italian dinners. I knew it would be a long time, if ever, that the folks would be in the area again. “Come on Mama, let’s get ready, and then we can go,” I encouraged, as she scurried around looking for her favorite warm sweater. “Well,” she said in a casual manner, “I can get ready, or I can go, but I can’t get ready and go” For her each request had become a challenging chore. We settled on just going. The restaurants in Occidental were casual in every sense of the word. So dad and I settled on just going. The meal was wonderful, and I know they, especially Dad, would miss their favorite quick dinner and it’s convenient location, just two miles from their home.
THE THOUGHT IS PART OF ALZHEIMER’S
Ken never used my mom’s quote. He had his own. “I can’t go,” he would explain as soon as I said, “Let’s go.” “I have too much to do here, or I’m in charge here, and I can’t leave the house without some-one to watch things while I’m gone.” Tip-toeing around his excuses looking to counter whatever he said so we could be on our way wasn’t easy, but I usually persevered and soon we were on our way to wherever I had planned.
THE KINDNESS OF “STRANGERS” CAN MAKE IT ALL WORK
One evening I had planned that we attend a festive concert at one of our church buildings where it was all right to wear casual clothes instead of our Sunday best. I was doubly happy because some of the large buildings can be cool, if not downright cold, so wearing our jeans was a good thing. We easily found seats and waited for the performance to begin when suddenly I knew I needed to go to the ladies’ room. If I took Ken with me he could wander away, or we would probably lose our seats, and we had good seats. I was sitting between Ken and another man that I had seen now and then at services and other events. Quietly I explained that my husband had Alzheimer’s and I needed to be gone for a few minutes. I also mentioned to him that Ken mustn’t wander because of his AD. “I’ll be happy to care for him while you’re gone so don’t worry. He’ll be fine.” I left and was back in record time and Ken was just fine. My volunteer said that Ken did want to leave and look for his wife, but my new friend convinced his charge that I would be right back. The evening was worth every effort and I do believe that even Ken enjoyed getting out for a bit of entertainment.
It doesn’t take a village to care for Alzheimer’s patients, it just takes a lot of thoughtful people and I have been blessed with many of them.
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TRICK OR TREAT ? WHEN I WAS A KID
October 30, 2015 – There once was a time , believe it or not, when it was unheard of to visit
neighborhood homes and kindly threaten “trick or treat” in San Francisco or any other city in the Bay Area.
A HALLOWEEN PARTY NOW AND THEN
My sister threw the first Halloween Party that I ever knew about. We lived in an old Victorian house high on a windy hill in San Francisco, and that Halloween night it was raining. She decided to let her friends know which was the right house so she rummaged through the garage until she found our dad’s “trouble light” for working on cars, and because it had a hook, she hung it on the front porch for all to see but not before she replaced the ordinary bulb with a bright red one, which shown brightly all over the neighborhood. Continue reading
October 23, 2015 – In the last post I related our experience on traveling by car long distances with my husband who had Alzheimer’s. Perhaps you might think that a peaceful, relaxing journey on a route world known for it’s beautiful scenery and historic interest would make an easy stress-free journey for adult or child alike. Not necessarily so. Of course, standing on the platform waiting to board the enormous steel string of cars is a captivating thought for youngsters, as it is for many an adult. It is my belief that despite the gorgeous views and possible glass topped observation car to view them from, trains rank next to boring motel rooms for AD patients just as they do for children. However, I can only refer back to a trip where Ken’s mom took our oldest girl at about age four to Colorado on the train. Not only a train, but the famous California Zephyr . Going to Colorado, Grandma related that, Debbie was a perfect angel and Grandma Rose could hardly wait for her brothers and sisters still living near the old home in Pueblo, CO to see her first grandchild.
The return trip, however, was very close to a nightmare, also related by Grandma. For two weeks the perfect child had been doted upon by all of the loving great aunts and uncles. Needless to say that once on the train streaming toward California the child missed the attention that had been lavishly spent and turned into an unreasonable, whining, brat, who was now bored with the train, the trip and, unfortunately, Grandma. Debbie was not at all interested in watching the world zoom by, no matter how beautiful, even from the Vista-dome
COMPARE AND RECONSIDER
A few weeks at home with Mom and Dad plus a new baby sister, and realizing that she was no longer the center of attention Debbie returned to her usual sweet, willing and obedient self . The next time she took the train was in her middle age when she was content to relax, read or watch the world go by.
I used the child as a comparison because an Alzheimer’s patient can act the same way. As the disease takes over their brain, it needs to be filled with activities which they can relate to. Being confined to a motel room or a train car allows them to question their whereabouts causing irritability and, perhaps, rebellion. Would your loved one threaten to get off the train, or make an effort in his/her frustration?
BOATS OR SHIPS
We were invited by our grandson’s in-laws to join them on a cruise through the British Isles. Ken’s disease was still very much in the early stage, so I gave Bob and Marsha an enthusiastic “yes.” We would fly to London, board the ship and cruise through the icy waters of the North Sea stopping at ports of interest, then fly back home. Ken was well enough that he looked forward to another cruise. We had already cruised with his sister and husband a few times, before AD, and then he was a Navy man and loved ships and the atmosphere of the open sea.
We flew to London, then we were bused to our ship and off we sailed. Unfortunately, we were the first British Isles cruise scheduled that year and the weather reminded all of us that a touch of winter remained and we did miss a few ports as the seas were too rough to ferry us safely ashore in the small boats. Meanwhile, Ken ran laps around the deck and enjoyed the gym. Much was just like home in that respect. When we did dock we were all pleased with our visits to castles, misty glens and searched for the elusive monster at Loch Ness.
SEATS TOGETHER ARE A MUST
Back in London, Heathrow Airport was jammed with tourists anxious to get their flight and be on their way home. We were no exception. Marsha did the footwork while we waited for our seat assisnments. “I’m sorry,” she sighed as she gave us the news that they couldn’t seat Ken and me together as there were no double seats available. “Someone will suffer,” I replied. “Whoever ends up being Ken’s seating companion will be most unhappy, and the airline will hear about it. Can you imagine having someone sitting next to you for nearly 10 hours who makes no sense?” I added. “The ticket agent needs to see the two of you in person with your passports,” Marsha reminded me.
As Ken and I stood before the agent with our passports Ken talked with me in his usual confused and questioning manner. I could see that the agent was listening. After a few minutes she asked if my husband was all right. I told her that he had Alzheimer’s disease and was a bit confused at the moment. Before we could walk away and get back with Bob and Marsha she called us back to the desk. “I found seating for the two of you together,” she stated. “OH, HAPPY DAY, AND OH, HAPPY FLIGHT.”
ONE MORE TIME
Christmas of that same year we flew once more making certain we had seats together for a quick flight to Utah, so we could spend time and visit with Debbie and Mark between Christmas and New Year’s. The flight going was uneventful, and Mark and Debbie met us after we landed. Flying home was also uneventful and successful as well with family on this end meeting us in Oakland. My advice, especially with the approach of the holiday season and its resulting travel is to find a good plane and keep the trip short. You, your loved one with Alzheimer’s and your fellow travelers will enjoy the experience more. Traveling with a person with Alzheimer’s is a doable adventure, as long as the patient doesn’t have severe A.D. Through my experience, plane travel makes the most sense for time and comfort for all concerned.
TO GO OR NOT TO GO
October 15, 2014 – Traveling with older people, especially those who have a dementia is almost like traveling with small children. If the companion is older and still has most of their cognitive awareness and other learned skills, it can be an enjoyable trip. However a long automobile trip can be difficult for all concerned when Alzheimer’s disease is part of the package and can prove to be more challenging than anticipated. Our friend, Jayne had asked me to drive her with a good portion of her household kitchen and office necessities to Salt Lake City where she would be serving a mission for our church working in the genealogy research library.
We packed the pickup with her needed belongings covered with a tarp held securely in place with crisscrossed bungy cords. When it came time for us to squeeze the three of us into the front seat Ken suddenly decided he couldn’t go because he had too much responsibility at home. Obviously, he was feeling the ravages of his Alzheimer’s. It took a few minutes of coaxing, bribing, pleading and using any viable persuasive means I could think of to get him to take his place in the truck, and finally we were off and away with only 800 miles to go.
PICNIC AT A REST STOP
I had packed a lunch in a small ice chest so we could pull into one of the rest stops scattered throughout the states, and not only enjoy the rest, use the facilities, but take a walk and get some needed exercise, especially Ken. Like children older people with dementia can become confused and lost if not watched closely. He found the men’s room with no problem, but was confused when he came out. We watched him for a while before I joined him and brought him back to where we were waiting.
THE FIRST NIGHT
He was fine when we stopped at a motel for the night and didn’t mind not being in his own bed. The added benefit of the trip, which kept him encouraged, was that we would also be spending a few days with our daughter and her family who were living in Ogden. We unpacked, helped Jayne settle into her new place and then drove north to Ogden. Ken still recognized his oldest child and was happy to see her. The next day we all visited the Railroad Museum.
History buffs might remember that it was above Ogden in 1869 where the golden spike linked the railroad at Promontory Point connecting the east with the west. From that date on travelers could travel from coast to coast by rail. Ogden was the railroad hub in that area for many years. Now the station and buildings have been converted into a Railroad Museum. Ken did enjoy the day as he had worked for Santa Fe as a young man
THE RETURN TRIP
After a few days we were ready to return home. I found it much more difficult without Jayne. I couldn’t take him with me into the Ladies’ room and he was a bit fearful about waiting for me alone. Furthermore, at the motel he wasn’t as comfortable as he had been the week before. Instead of flopping down on the bed to watch TV, he wandered around the room asking why we were there. Constantly, he pleaded, “Let’s go. I’m ready to go right now, and if you aren’t coming I’ll go alone.” When I asked where he planned to go he told me that he would go out and look for a bus station, and he left.
Hot on his heels we walked down the sidewalk of the small Nevada city. He seemed content to walk. At least he was doing something and not just sitting in the motel. I suppose that satisfied him for a time. During our conversation I tried to remind him of who we were and why we were there and that tomorrow as soon as the sun came up we would be on our way home. To further encourage him to get a grip, I went into a casino. Watching him from behind a corner he appeared to be taking in the scenery, but continued to look around as if he were looking for someone: me or anyone familiar. I stayed out of sight for a few minutes just watching him. Eventually I stepped forward and said, “Hi.” “Where have you been,” he chided me.“I’ve been looking for you.” Once again we had recognition. I felt relieved. Slipping my arm in his I said, “Let’s go back to the motel.” Quietly he came along with no more references to taking Greyhound home. With me promising that we would be on our way first thing in the morning he agreed to get in bed where he slept the night through with no problems.
So, with the question being, “To go or not to go?” I discovered quickly the prudent thing about travel. It is just too difficult when there are only the two of you. People who are confused and are afflicted with any of the dementia diseases don’t do all that well when facing the unfamiliar circumstances that comes with travel. Even having two helpers the patient is much happier at home in their own surroundings. A short trip close by, such as the park for a change in scenery is a better experience for all concerned. Perhaps if traveling is a must it’s best to fly which we did when we visited the family during the Holidays.
COMMENTS BELOW ARE WELCOME.
ALONE WITH FEAR
October 10 – 2015 I believe that just about all of us can remember that very first time we were left alone while mom went somewhere for just a few minutes leaving us by ourselves at home without even our older brother or sister in charge. It was like wearing a cloak of fear. Perhaps not fear, just discomfort — a bit of apprehension — but we managed, and soon she was home and we did just fine making the next time much easier.
My oldest girl during her very early years had a worn blue blanket that she loved and carried around with her for as long as it lasted. It gave her a sense of security that went beyond my loving arms around her tiny body. Perhaps it was more the combination of the blanket and my arms encircling her. Or her just holding the blanket as she sat on my lap sucking her thumb gave her comfort and security
ALZHEIMER’S: A SCARY PLACE
At home I recall that Ken liked to be with me, especially as his disease progressed. He was like Velcro, sticking to me and feeling secure. No matter where I was in the house he searched for me. Once I was found he asked permission to stay where I was. If I was straightening drawers in the bedroom he would gently enter and ask, “Is it all right if I stay here with you?” I always told him, “Of course.” Then he would ask permission to sit down. Permission granted. I wanted him to feel the security of being in his own home. To reassure him by reminding him that he was home and that he was welcome to be wherever he liked. He was so childlike and somewhat fearful. I just wanted him to be comfortable and feel secure.
“I DON’T WANT TO STAY WITHOUT YOU.”
I had taken him for an interview to see if he might qualify for Clinical Trials that were being held at one of the hospitals in San Francisco. “You’re not going to leave me here, are you?” he had asked when we entered the reception room of the office. I hadn’t even considered leaving him alone, but I did reassure him that I wouldn’t leave without him.
The doctors and their assistants were wonderful as they put him through tests about remembering and following directions. He remembered only half of the instructions. As we sat together I held his hand while he groped for answers to questions about his illness and personal life.
As the day continued tests were mentioned where the patient spent the night at the facility to better study his reactions to what they would be doing including new medications. As soon as Ken heard there was a possibly of him spending the night he looked at me with worry written all over his face. “I don’t want to stay without you,” he anxiously expressed. “I won’t leave you by yourself,” I assured him once again.
THE STRONG BECOME WEAK AND VISA VERSA
Here we were, living our life in a strange, unfamiliar place, locked within the inescapable walls of this terrible disease. He, the husband, had been my protector for all of those prior decades of our marriage, and now he needed me to take upon myself that roll of being the strong grown-up. The adult who could fight dragons and keep him safe. Oh how I wished it had been true and that easy: that I would always be the responsible one keeping him safe. A reversal of rolls, but it was all right, whatever he wanted and needed was fine with me. I would have slain the dragons had I been able, but they kept coming from out of nowhere at times overwhelming me almost beyond my capacity. Meanwhile I would reassure him and be his “blue blanket” of security for as long as he needed me. I only wish I could have willed away the frightening demon dragon named Alzheimer’s.
COMMENTS MAY BE LISTED BELOW AND ARE WELCOMED.
October 2, 2015 – As a caregiver for more than 14 years I have an accumulation of stores that could fill a book, and then some. It seems that no matter what illness the loved one has there are stories. I do believe, however, that when the disease is one that inhibits memory, manners, social graces, or personal hygiene the patient deserves that many situations need to be private. That has always been my belief although I have read many accounts when embarrassing situations have been published. I am sure that the writer did not share to embarrass the patient, but to share with other caregivers some of the problems that will be faced by those helping guide their loved one through a maze of problems and troubles that add to the complex situations of deteriorating health. I share a few examples of issues that occur during the everyday care of anyone who is ill. However, when sharing these remembrances I believe, in all fairness, that one should only share stories which will leave the person with his/her dignity.
MEMORY AND CONFUSION
Losing one’s memory is not funny, but forgetting important facts in one’s life can lead to humorous moments, and for me, those are all right to share because they are funny with no humiliation. My husband’s career was that of a civil engineer. One day he and I were watching television when he picked up the remote control. He left his chair and began to leave the room. I asked where he was going. Ken showed me the remote telling me that he was going to put it away before it got lost because it was one of his engineering tools and he would need it if they called him back to work. Did I chuckle? Of course, because it was funny. When he wasn’t looking I rescued the remote and put it back near the TV.
We had been invited to a birthday party for one of our great grandsons enjoying a lovely bar-b-cue dinner offered by the little boy’s parents. The dad, John, our grandson and his wife, Marisol, were the perfect host and hostess making sure everyone was served and had everything they needed or wanted. Once the guests had finished dinner, the birthday cake was brought into the party. The birthday boy, Joaquin, blew out the candles and the cake was cut into pieces so everyone could enjoy the dessert. Ken could have replaced the Cookie Monster of the Muppets. He did enjoy his sweets. Looking around the room as he finished his cake, he looked at me with disappointment. I asked him what was wrong. “I didn’t get any cake,” he complained to me. “Yes, you did,” I said. “You just finished it.” “No, I didn’t,” he insisted. “Maybe you did, but I didn’t get any.” With an apology Marisol brought him another, “Sorry, Grandpa, here you are. Enjoy.” Quickly he polished it off while I asked Marisol if she would put it out of sight before he wanted more She obliged, but cut me a section to take home so Great Grandpa could enjoy some either later or the next day. Feeling that he had enough sugar I did put the cake away until the next day.
For a long time he remembered to say, “Thank you,” at appropriate places and times, but other than that one speck of niceties he was without the gift of social graces. For that I have long since forgiven him because he was filled with them before AD made him someone other than who he had become.
This is an area where every cargivers I have ever known is well aware of a whole chapter about what can happen during these very personal situations. Years ago I read of a daughter who got her mom all ready for a doctor’s visit dressing her in a lovely white suit that mom just loved to wear. Of course the dreaded need for nature’s call took hold and there was poo everywhere. Daughter had to begin from square one all over again.
For me, I would not share any of those stories as it does reduce the dignity of the loved one to have the whole world, or readers, know of their embarrassing, but natural, accident. There is enough humor involved with our loved one’s illness (notably memory loss and confusion) without having those awkward and sometimes sticky incidents be a part of anyone’s remembrance of someone who had so many lovely and memorable qualities. In my mind there is enough information out there to help caregivers cope with bad situations. Leave the mortifying stories in the past where they belong, preserving the patient’s dignity. That shows your love and respect for that person you have loved and cared for throughout the duration of their illness.
TAKE THE DAY, IF YOU CAN
September 25, 2015 – As we devote time and energy in caring for our loved ones; that same time and energy slips through our fingers just as water slips through a sieve. It’s not only the life of our loved one that is vanishing, it is our life as well. As a former caregiver my best advice is, “DON’T PUT YOUR LIFE ON HOLD.”
EASY TO SAY
It is said that a change is often as good as a vacation. So, make a change even for a few hours. Without a lot of added expense ask if your caregiver could spend the night. If possible then find a friend and go for dinner, a movie and then book yourself into a motel and relish in the fact that for a little while you are without responsibility. Bring a good book and read yourself to sleep. Occupy your mind so you don’t worry. Surely, someone in the family can take your place so you can even plan to get away a little longer. Perhaps two can double up and share the care of your invalid. Be firm, loving and yet convincing with your request. Even apply a little guilt.The one who is ill is probably their loved one as well.
It has often been said that “It takes a village to raise a child.” Using that same idea we can say that it takes an entire family to care for a terminal patient, not just one person. Certainly, we all understand about other members in the family who have other responsibilities. Granted, but you aren’t asking for a life-time commitment – just a bit of down time for yourself.
SOME JUST SAY “NO”
This is so true. There will be some, even family members, who will always say, “no.” But, there will also be family members who will say, “yes,” or at least, “let me check and see if I can make it happen.” That’s the person you’re looking for, someone who is willing to work it out.
THE OPERATIVE WORD: CHANGE
It’s what the caregiver needs is change, time for recharging the battery. So if a short vacation can’t be arranged, then take yourself to a movie. Buy the popcorn and a giant drink and go. Careful to read the reviews so you know what you will see and not be sorry that you spent money and time on some worthless piece of junk, and there’s plenty of that out there. Plan a museum trip for yourself that can be taken while the caregiver is with your loved one. Or take a ride on your rapid transit – from one end to the other. Check out the scenery. It’s a new world when seen from a different perspective. So do it. Just do it.
If you don’t take care of you, you won’t be worth much in taking care of you’re loved one who can’t help where he/she is, but you can help them – even if no one will help with a vacation, at least you can take part of a day off, and don’t forget to enjoy yourself.