December 26, 2008 — Ken’s Christmas benchmark was noticeable this year. He has become somewhat frail looking, and moves like an old man with faltering footsteps and waving arms rather than the robust mature person he was before AD. As we approached the steps to our daughter Julie and husband Tim’s house, where we have spent Christmas Eve for years, I noticed he was fearful of venturing onto the stone-laid walk. Even though he was supported by two of his sons, he felt along the stones with his feet wanting to be certain they were solid. Once inside the house he was much more subdued during the evening — almost like a shy, clinging child in new surroundings. It’s times like this when I say he is like Velcro.
Later on, Ken felt more at ease and decided to get a drink of water in the kitchen. Carefully, he meandered his way between the glass coffee table and the couch. He did well, but on his return trip, he took a quick right turn at the middle of the clear table top. (He has macular degeneration in his right eye and his poor vision is now even worse.) Blindsided and in the dim lights of Christmas he thought the way was open. Suddenly, he was falling right onto the glass and into the sofa on the opposite side. I could see him grimace as he went down. Immediately, I worried that he might have damaged his hip replacement. The men who were close leaped to his assistance, but being the stubborn, independent man he still is Ken wouldn’t allow the help. Instead he struggled to right himself. Although the glass is about three-quarters of an inch in thickness we were all concerned it might be broken. If it wasn’t, the possibility of more pressure on its tilted position against the base might be the final insult causing it to break and really do him injury. Still refusing help, he managed to climb over the glass and pull himself erect. The men picked up the top placing it back onto the supporting base. No damage and no harm done except for Ken’s shin bone, which was pretty well skinned.
Within a few minutes he had forgotten the accident and settled down next to me. All evening long he asked, “Whose house is this?” Repeatedly I answered, “Julie and Tim’s house.” Not once, but it seemed like a hundred times. Comparing benchmarks, I could see considerable change during the past 365 days.
We had dinner, opened gifts, exchanged small talk and everyone went home. As soon as I entered the house I slipped him two Tylenol PM tablets. He had been sleepy in the car, but by the time we got inside, brushed his teeth and took the pills, I could sense him slipping into one of his other characters. It could have been 12-year-old Buddy, who guards the house like a stockade with the Indians circling. Midnight and I was so ready for sleep, but wanted to wrap a few more packages. He began pacing, rattling the outside doors to make sure they were locked. After three or four rounds, I lost my temper and he ordered me to leave. Instead I busied myself finishing small chores and wrapped the waiting gifts behind locked doors. In between his wanderings I peeked out to make sure he was all right. Eventually, he settled down and went to bed. It was 3:00 a.m.
When I woke on Christmas morning, the day was well underway. Feeling somewhat refreshed, I quickly got up, dressed and spread out a small morning buffet to munch on for two of our sons, their wives and granddaughter, Jessica. I wondered if I would feel up to driving to Antioch (some 50 miles away) with the gifts for grandson Sean, his wife Lani and family. That decision would come later. The late-morning visit with the others was lovely. I was glad they came, and Jessica, our youngest granddaughter, being such a sweetheart had made us several gifts.
Approaching 3:00 in the afternoon, my morning family had other places to go and friends to see. A little late for us to be leaving for Sean’s, but if we left right then, opened the gifts and had a bite to eat, we could be home by 9:00. In addition, we needed to be back when Tim brought their three dogs for a half week’s stay. They were off to Atlanta to visit son Pete, his wife Renae and four-year-old Mason, one of their three grandchildren.
It’s been about three years since we lost our last dog. Even though I miss not having an animal in the house, I don’t miss having to clean up the piles of hair that seem to float in the air landing on and under everything. Nor do I miss the compulsory yard-duty clean up brought about by their needs. It will be interesting to see how Ken does with three spunky dogs. Meanwhile, hectic though they can be I love the Holidays.
Originally posted 2008-12-26 07:34:56.
It’s the 24nd of December and there are a few things I needed to buy. We used to enjoy last-minute shopping with lots of good buys the day before Christmas, but that was long ago. Today it was a necessaity having extra people coming. The parking lot was packed, the stores crowded and the lines long, but we endured.
Another man standing behind us in line, much younger than Ken, began a conversation asking what he did before retirement. In no time at all, Ken was telling him about his former work — high-rise construction — then moving to a company that made locking devices for jails. Our in-line time passed quickly and our fellow shopper was totally impressed by Ken’s career; “So interesting and diversified,” Ken’s new friend had commented. Exchanging Christmas greetings, we parted and went our separate way. I was astonished.
How could my husband have remembered so much? Is there a magic door to memory which can be triggered to open with certain words, certain times or places, seasons, weather, questions? I don’t have the secret key which periodically unlocks that mysterious entrance. It just happens with no explanation.
More often than not Ken glances at me when asked about his life’s work pausing at the stranger’s question and looking a little bewildered. When that’s the case I fill in a few of the important spots hoping to jump-start some recall from Ken, adding jibs of encouragement such as, “You remember that, Hon.” At times it worked, but other conversations ended with me explaining that my husband has Alzheimer’s. “Sorry,” is the usual reply. But not this afternoon. It’s been such a long time since he was able to speak of his career, to tell his own story, talk about himself and what he had accomplished with his life. I was not only amazed, I was delighted. For a small space in time I had my husband back.
We broke away from the crowds and came home to a bit more gift wrapping before Christmas Eve. As we neared the house Ken said, “This is where I live. I wonder if my wife is at home?” Memory vanished just as quickly as it had appeared.
I’m grateful for moments like standing in line, when he’s lucid, even if it’s only for a little while. During that time we are a couple — a husband and wife — out buying Christmas presents for those we love, and it feels so good — almost like being “normal.”
Originally posted 2008-12-24 05:37:23.
December 22, 2008 — Last year I put up lights along the roof line of our house, but found that Ken would turn them off as quickly as I turned them on. I couldn’t imagine why he wanted them off, especially when we would drive through the neighborhood where he admired the Christmas scenes on other people’s lawns and beautifully lite homes, but still insisted that our house remain dark.
Recalling how he felt, yet not wanting our house to look as if our last name was Scrooge I strung lights around the posts on the front porch and let it go at that. Still, we played the off and on game. Tonight, after standing outdoors surveying the other houses nearby, he came in from the cold extremely annoyed because “those” people had their Christmas lights on and there was nothing he could do about. I agreed with him saying, “That’s right. There is nothing you can do about other people having lights on their roof and Christmas scenes in their front yard.” Then I asked, “Why does it bother you so much.” He had a difficult time formulating why he was so annoyed, but finally he was able to express his fear — and it was fear.
Looking very troubled he said, “When all those lights are on along the street there are criminals who will take advantage of it and will rob the houses.” Surprised at his reasoning, I asked, “What has happened in the past to make you believe that our neighbors, or us, have been robbed during Christmas?”
Then I got the all-knowing look as he continued, “You don’t live here all the time, so you wouldn’t know what happens in this neighborhood.” Ken looked at me suspiciously and laughed, a mocking kind of laugh that said, “Just you wait.”
He had become Mr. Hyde in the blink of an eye and I am no longer his wife. The intrusive Mr. Hyde always intensifies Ken’s growing paranoia. He quickly followed with, “Ask my wife about it when she comes home. She can tell you about all that goes on because of the lights.” Then he gave me the look which said, “I know something you don’t know.”
When Mr. Hyde appears I know it’s time for me to back off. This is when I say, “Our discussion is closed,” or some other remark to dismiss myself. He doesn’t want to let it go attempting to provoke me into a further argument while still embracing his fears. I know the fear is real and I never try to scoff it away, but coaxing him into the family room is a distraction which usually works. Watching TV, looking at the Christmas tree and hearing me prepare dinner is relaxing and seems to soften his mood.
It’s always a relief to find out what troubles my AD patient. At times the problem can be fixed, but sometime not. I’m not going to ask my neighbors to turn off their lights. I’m glad, though, to discover why he doesn’t like the lights, and I’m grateful when I hold my tongue. No sense turning the trivial into an argument. It’s far better to remember how my husband enjoyed the Holidays in the past, and how pleased he was the first time we hung lights along the edge of the roof when his only fear might have been falling off the ladder.
Originally posted 2008-12-23 06:24:44.
December 21, 2008 — When Ken and I married we were everything to one another: husband and wife, soul mates, lovers and best friends. At first we had eyes for no others and space for only the two of us. Eventually the oneness and passion took its proper place in life and we became, once again, part of the real world.
We were already children of our parents and a sister and brother to our siblings. We had aunts, uncles, cousins and numerous friendships. As we grew into the big, roomy shoes of married adults we took on new titles becoming not only what we were already, but more in being the kind of people we had chosen to be: a man and a woman who were quite capable of family devotion, preparing for earnest parenthood, worthy neighbors, and good friends to many. We also became as the scriptures tell us a strong, “equally yoked” team. Well, as equally yoked as one can be married to the world’s number one procrastinator. However, we were still everything to each other as we had been in the beginning. Everything, that is, until more than a half century later when the demon Alzheimer’s introduced two new men into my life; both of whom I could readily do without.
This afternoon was filled with phone calls and company, which is always good for Ken – and me. Having been a social person all of his life, Ken is happy to have someone to talk with even if his brain doesn’t recognize them. Furthermore, he does remember how to “fake” it. A young visitor might ask, “Hi, Grandpa. Remember me?” Ken will smile and answer, “Can’t recall the name, but I recognize the face.” He doesn’t, but the encounter gets his brain working and makes a small – or tall — guest happy.
Having visitors makes me happy as well because that stimulation seems to keep away his two other personalities. My husband can become any one of three different people – or I suppose it’s better to say three different personalities, one of whom is the man I married with a diseased mind. The various moods or personality changes that can appear at any time is part of Alzheimer’s. I have named the first intruder Mr. Hyde. While this personality can be rude, disagreeable, mean, and a bit combative, he is not violent and murderous as was the character created in the turn-of-the-century book Dr. Jekyl and Mr. Hyde. Nevertheless, because he can be unpredictable, I tagged him Mr. Hyde as a point of identification, and the name seemed to fit this stranger with whom I am often pitted.
GETTING TO KNOW THEM
Mr. Hyde admits to being married, but not to me, and has a family which is never discussed. He will often look at me and ask, “Where is my wife?” or “Where’s the boss?” The boss, of course, is me although he sees only a stranger, someone very young who is still going to school and needs to call her parents when it’s time to go home. That concern is part of Ken’s deep-rooted personality as he worries whenever he knows a woman is out alone in the dark of night.
The second personality is Buddy,who is about 12. Buddy owns our home, which he claims as the house where he was born, having received it as a gift from his father and mother who still live here, and are presently away. Buddy tells me he is not married, has no children and no additional family other than his sister Loretta who is also away. As Buddy, he can become very strong and quick in movement. He can easily become combative when confronted with anything, especially his rights as a property owner. Often he sees me as an intrusive stranger who has no right to be here and wants me gone from the house. The boy personality is very protective of his home. It’s almost as though he has been left in charge while his parents are away, and takes his assignment very seriously.
Mr. Hyde was the first to arrive.Both of these newcomers can make things very unpleasant with their presence. Mr. Hyde and Buddy love to argue, even though most of the time they remain politely pleasant unless they are provoked which can be real or imagined. However, it doesn’t take much to set them off. I dislike the two intensely, all though I believe they cling to Ken’s basic upbringing about respecting women. I can just hear his mother say, “Buddy, you must always remember this: You are never, never to hit a woman – not for any reason!”
As strong as these personalities are neither of them seems to appear when there is company in the house, and that’s a good thing. Meanwhile, and though I detest both I am prepared for Mr. Hyde and Buddy to be the other men in my life for as long as they decide to stay.
Originally posted 2008-12-22 02:56:18.
NOT JUST THE PROS FEAR AN AD VICTIM
March 17, 2017 – The subject matter for a recent post addressed the important of recognizing fear when caring for an AD patient. For me, of course, I’m writing about my husband Ken who passed on two years ago from complications from the dreaded and debilitating disease. It was about the importance of matching the patient with their caregiver. My oldest daughter had the assignment of finding her father a caregiver while I recuperated from a serious automobile accident.
She was successful in finding Ben who quickly became a member of the family. Crizaldo and David were Ben’s relief with David becoming Ken’s main caregiver following Ben’s retirement. They were matched physically with their patient.
THEN THERE WAS ME
I became first assistant, but it took me a while to do my job without fear. One of my injuries from the accident was a broken neck. For three months I wore a neck brace 24/7 until the broken vertebrae knitted back together, and an X-ray showed I could discontinue the brace.
There were times working with Ben or one of the other men when Ken would become physical toward those striving to help him get ready for the day. Many a time before I became the assistant our granddaughter Kristina was the helper. Ken would often push, shove or hit her to the point where she would go into her bedroom and cry. She too had reason to fear her grandfather.
Finally, after my X-ray proved my neck had healed I was still cautious. While helping one of the men I felt more confident, comfortable and less vulnerable if I put the neck brace back on while working with my husband. I felt too uneasy to take a chance of receiving a right hook to the jaw or elsewhere that might have re-injured a weakened area or cause additional harm. Following a few more months of protected assisting I took the brace off for good. We further improved our restraint methods so both Ben and I felt a little less threatened.
Alzheimer’s and other Dementia diseases are difficult for all concerned. When a helper or even a family member is fearful of the patient, a healthy caution should be a part of the house rules including visitors no matter how well-meaning they may appear. Better safe than sorry.
Dentures In A Multi-user Household
My mother had false teeth and wore dentures by the time she was 20. Born at the turn of the 20th century most people, during that time period, could count on dentures early in life. With poor dental hygiene and even poorer access to dental care, it was more or less taken for granted losing one’s permanent teeth was a given at a fairly early age.Most dentures were not only poorly made, but fit poorly – wobbling and clicking when the owner ate or talked – they also looked as phony as a seven dollar bill. Nevertheless, the wearer concluded they were better than our first president’s dentures – supposedly made from wood — and they were.
December 20, 2008 — This is who I am: Ann Romick or Mrs. Kenneth Romick as I appear on the bill from my long-time Macy’s card. However, my birth certificate reads differently with the name Mabel preceding Ann. For many years now, I have used my middle name Ann as my pen name. The trouble with being Mabel is that it is a very difficult name to live with, and I have found that Ann, being a bit on the bland side of the rather zesty innuendos my first name often generates, makes introductions more comfortable. Besides, I have found that “Ann” is more reader and editor friendly. Yet, I am who I am, and if I were nameless I would still be me.
That said, my writings are not about my name, but about living with Alzheimer’s disease on a 24/7 basis which will not only include happenings about me and Ken, but generations of family. Remembering and appreciating the past and learning to live with, understand and accept the present can bring both joy and sorrow. The writings, memories and musings involve our parents, friends, aunts and uncles, our children and our extended family which spreads in every direction, plus a glimpse of the circumstances which tie us all together.
Ken and I have battling his Alzheimer’s since January of 2004. Actually, I have known of its high probability for much longer as both of his parents were victims as is his sister, Loretta. I first noticed signs of Ken forgetting in the late 1990s. There were small indications: forgetting things we had done, some of the places we had been, but the glaring forgetfulness was his inability to find the homes of our children who had lived in their same houses for years. Somehow, he couldn’t remember how to get there without my help. Finally, we visited a neurologist. I shared what I knew, but added. “Perhaps we can say he is just forgetful.” So for a year we pretended nothing was wrong. In 2005, the diagnosis was confirmed: my husband had Alzheimer’s. Even though I could see it was coming, it was an awful blow; no longer was it “maybe” Ken has AD. It was now chiseled in stone.
My life has become a constant struggle, and this will be somewhat of a journal which I will write on a regular basis. Writing is therapy for me which allows me to read my own thoughts giving me a broader perspective of other caregivers who are keeping watch over their loved ones no matter what the disease. Some days, thank goodness, are rather uneventful. Meanwhile, and on good days I will look for, appreciate and count each and every blessing.
Originally posted 2008-12-21 06:41:30.
MAKING A GOOD MATCH
February 17, 2017 — I am sure I’m safe in saying that very often the caregiver has some fear of their patient. That’s why it’s so important in choosing a caregiver for your loved one that you don’t try and mix a Goliath with a David. Caregivers aren’t issued sling shots. My husband was 6′ 2″ and weighed 180 lbs when he was at his best before he became a victim of Alzheimer’s disease.
Finding a caregiver for him was quickly stripped from my grip following a horrific automobile accident seven years ago where I was removed from the entire scene of Alzheimer’s for a good three months/ I was totally incapable of any hands-on care that usually had been my responsibility. I also knew before the accident that finding someone to help me would be necessary for the year of 2010. Just watching his decline during the previous Holiday season I knew that it would be a must for his future well-being, to have help, especially if I wanted to keep him with me at home.
HANDING OUT RESPONSIBILITIES
Following the crash, and our family being informed of the accident, an evening of stunned acceptance mixed with shock and wondering how they could possibility handle caring for not one, but two parents in need, and not having any idea how long my healing would take, our son Keith stepped forward as if he were the CEO and assigned responsibilities to each one of his siblings. He, of course, as a good CEO accepted the burden of seeing that all needs were met and continued as the self-appointed executive issuing commands and supervising follow-through until I was well enough to return home and take over as the one in charge.
“FIND DAD A CAREGIVER!”
That was one of his early commands and directed at his sister Deborah who is the oldest of our children. Immediately, she called the work resources for our church. At the time, the work coordinator told her that there were no posts for that type of work. Knowing that a caregiver was a must so their father could come home from the hospital, she called a local agency. The caregiver arrived before Ken was released from the hospital. The caregiver was not told that her patient was a man, nor was she aware of his size, weight and apparent strength.
On the way home from the hospital Ken had a bowel accident. Entering through the front door, with Ken in tow our two sons Keith and Kenny, mentioned that Ken had had an accident in his shorts and needed to be cleaned up. The caregiver was sitting with our two daughters discussing the situation. No one volunteered, but even the paid professional declined to step forward. The two sons took their father into the bath with the walk-in shower and cleaned him up. Finishing up the week, the agency contract was not renewed, which was a good thing. The job was beyond her capabilities. She had not been matched with her patient, and admitted she was fearful of him.
HELP ON THE HORIZON
A few days later one of the work coordinators from church contacted Deborah telling her that he could personally recommend a man who had cared for his father-in-law during the last years of his life, and was looking for work. Debbie invited him for an interview. A perfect match. Ben cared for Ken until he retired with David substituting on Ben’s days off. Following Ben’s retirement David became our full-time caregiver — another perfect match.
Part of having a caregiver in the home is making certain that the caregiver is big enough and strong enough to handle their patient. Unless the man is very small, it’s best for a man to care for a man, and a woman to care for another woman. That makes both patient and caregiver more comfortable.
CAREGIVING NO MATTER WHAT
February 10, 2-17 — During the Golden Age of Hollywood Bette Davis was one of the super stars, and when you watched her on screen she was truly a shining star. Stars, however, even glamorous stars like Miss Davis don’t last forever and as she grew older she no longer played the romantic lead, but bravely took on character rolls that were probably more exciting to play than sweet-young-thing parts.
During an interview and well into her senior years she told the host that “Getting old wasn’t for sissies.” How true her words were then and are still true today as the generations slip quietly into senior citizens — ready or not.
PATIENTS OR CAREGIVERS
No one really gets to choose which roll may befall either the husband or the wife in any given relationship. In my case I was the caregiver and Ken the patient. There are times, however, when both the husband and wife are patients with one illness or another, and that presents even greater problems within the lives of concerned family members and devoted friends.
ILLNESS OTHER THAN ALZHEIMER’S
While my years of caregiving were dedicated to my patient with Alzheimer’s disease, other couples are faced with health issues that may also lead to crippling consequences. Example: A few months ago friends that Ken and I have known for at least 65 years met their adversary when Bill suffered a stroke. Bill is still a big man and his wife, Misty, is a delicate little snip of a woman. So they have a wonderful couple who live with them, who shares caring for Bill, keeping the house and yards shipshape and provide friendly companionship. As we all grow older and are faced with almost inevitable bouts of various illnesses we have choices. We can become angry and bitter and be disagreeable old grouches that no one wants to be around or we can choose to accept what happens and be as kind, loving and outgoing as we, hopefully were before.
THINK ABOUT GRATITUDE
I paid my friends a visit this afternoon and we talked about the book I’ve been reading written by the son of some of my church friends. The title, and available through Amazon, is “Flip The Gratitude Switch.” Certainly finding gratitude in any debilitating illness, including those destined to be terminal is not much to be grateful for, but when we search deeply we do find things for which we can be grateful even during our darkest hour.
I mentioned that I was grateful I was able to keep Ken at home with the wonderful caregivers we had and that I was also grateful for the many years of marriage and family that we, as a couple, still enjoyed, most of the time, until he passed on. Misty and Bill celebrated their 70th wedding anniversary last year and many months before his stroke. They expressed their gratitude for all of those precious and happy years together and for their children and grandchildren. While Bill has a paralysis in his right arm, and his speech is still a bit garbled, his mind is bright and alert, with an amazing memory — more gratitude. We even managed to play a fun card game before I left to come back home, and Bill helped me play the right cards.
Adversity will always be a part of most of our lives. Finding the good hidden somewhere within the bad can help us over the rough spots and help us get through the challenges of growing older. Remember. “Getting old isn’t for sissies.” So be ready to flip the gratitude switch that will help you build up a stronger armor
A LITTLE AT A TIME
February 2, 2017 — My husband Ken loved to talk, and was often the life of a party. He was a natural when it came to telling stories — one after another. Once while visiting a friend, Fred, in the hospital where we also shared the visit with his daughter Lisa. Ken and Fred exchanged stories never allowing Lisa to get a word in edgewise
On the our trip home I mentioned that Lisa had wanted to spend time with her dad as well as we did, but Ken never allowed her a moment of time to say a single word. “That’s just rude,” I said, telling him that in his joy of conversation he must allow others to join in. Sheepishly, he had agreed that he had “hogged” the time.
ALZHEIMER’S CHANGES PERSONALIES
Of course that day with Ken and Fred was long, long ago before Ken had any experiences with the disease even though his mom and dad both suffered from the debilitating illness later in our lives, and we spoke of the challenge we (the family) had to deal with now that grandma and grandpa were both a part of the mind destroying illness.
Of course, when Ken, himself, became a victim he was totally unaware of the many ways in which his personality would change, and how quickly he would go from “life of the party” to a silent observer off in a corner. Even when another guest would pull up a chair and talk with him. He was limited in what he would or could add to the evening.
Furthermore he had sincerely liked people and found them interesting, wanting to spend time with them. Curious about their jobs, profession or hobbies, the former Ken came armed with never-ending questions to keep the conversation moving. However, as AD took more and more control he became a bit fearful of being left in a situation where I might not be around to help him.
DISCOMFORT WITH STRANGERS
When the DMV insisted on him being retested for renewal of his license, he stood alone at the desk reading the long sheet of questions. Believing, for a while, he could cinch the test he looked over to me periodically, then winked. The wink was to reassure me that he had a handle on the whole procedure. In actuality he didn’t. We didn’t discuss what happened, but I was certain that as he read the question, then the multiple choices he became so confused he forgot the questions. He failed the written test so miserably they wouldn’t allow him to take the driving test. I was relieved. The DMV became the “bad guys.” Never did he show anger to me or the family that he could no longer drive.
He was evaluated for clinical trials. During one conversation the doctors doing the examination said they would like him to spend at least a night for better observation. When they left the room he whispered to me, “I don’t want to stay here without you.” I assured him that I would never leave him alone. AD had taken my “knight in shining armor, my valiant protector.” and left me with a frightened little boy. It was me who was left alone. Alzheimer’s is a terrible disease.