The challenges of caring for those with dementia
by Linda J. Meikle, LPN
September 6, 2005
The phone rang while I was mixing a batch of chocolate chip cookies for my boys and their friends coming over to watch a football game on TV. Wiping the sprinkles of flour off my fingers, I answered with my usual cherry, “Helloooo. This is Linda.”
“Come quick! Mr. Black just busted the living room window with a chair and he’s in the kitchen looking for a knife. He’s real upset and won’t listen to any of us.”
My first response was a quick call to 911 for emergency assistance as I dashed out the door giving ‘finish the cookies’ instructions to Philip. I rushed the few blocks to my job at Teresa’s County Home where an irate elderly gentleman had suddenly become unmanageable and dangerous at the assisted living facility.
It was my responsibility as the Health Care Administrator to maintain order and answer all calls, medical or otherwise for three assisted living homes in our town. The owner had designated me as her Administrator for the 40-bed facilities after I had worked as her staff nurse for a few years.
We had developed a trusting professional relationship while she trained me for the position and monitored my ability to follow her lead before she and her family relocated to Florida.
Now it was my task to keep the other residents and staff of this 20-bed home safe from the outburst of a confused Alzheimer’s patient, and it would take delicate persuasive action on my part to see that the combative resident was not taken to jail, but to a medical facility where he could get proper assessment and treatment for his extreme confusion and agitation.
By the time I arrived, the police had the resident in handcuffs and in the back seat of the police car. A burly policeman had thrown a blanket over the man to subdue him. The shattered glass from the window glittered in the flashing red and blue police emergency lights. It appeared there would be no question where this confused elderly man would sleep that night.
I was relieved to see that the Chief of Police had responded to the emergency call and as he stepped out of his car, I followed beside him.
“Hey Jim. Guess your guys have to take this man to jail and lock him up?”
“Well, Hi Linda. Do you have a better plan?”
“As a matter of fact, I do. How about the mental unit at Memorial Hospital? It’s only a few blocks from the jail. I could call and get a direct admit order for you.”
The chief agreed that this irate man, now sitting calmly as if he remembered nothing of the past few minutes, would benefit far more with medical attention at the hospital but he explained that if the police took him anywhere, it would have to be to jail.
“I’ll take him in my car,” I offered, thinking quickly.
“That’s not very safe. I don’t think you should take a chance of him going off again,” Jim countered.
“Well, how about one of your Reserves ride with me?” I suggested.
“I guess we could arrange that,” Jim said as he glanced over at Ric, one of his best Reserves.
With all the legal issues mollified and thanking Jim for working with me on this one, I set off for a long night at the hospital. The chocolate chip cookies would be all gone and the game long over before I got back to my kitchen.
Since taking this job for Teresa’s Country Homes, there was never a dull moment in my life. The training classes Teresa sent me to had been very helpful in understanding dementia and Alzheimer’s disease. She had also provided management courses and I had spent many months under her tudor learning her high standards and the professional skills needed to assure the smooth running of these well-respected homes that provided around the clock care for the elderly residents of our town.
The largest 20-bed home was staffed with a supervisor and several aides day and night. A secure fence surrounded the well-kept yard and the gate was locked with a secret code to keep residents in and allowed staff and family unlimited access. All the facilities were exceptionally clean and maintained as home-like environment as possible.
Teresa had created detail instructions for every aspect of running an assisted living facility – from menus and recipes for each meal to details on how to clean the stove on a regular schedule. What to say when a resident was upset and how to respond to emergencies like this.
The homes were run like clockwork and rarely got any cites when surveyed by state officials. It was one of the most rewarding jobs I had every worked, but I had learned to anticipate the unexpected.
For instance, Mr. Black was a new admission this morning. When his daughter brought him to the home located on Main Street she had been impressed with the homelike appearance, family pictures on the walls, well trained staff, home cooked meals and friendly atmosphere. The other residents were clean and well groomed. Activities were going on in the family room and the porches that ran along the outside of the home were filled with rocking chairs and families visiting with their loved ones.
The daughter had been hesitant to give up the constant care of her father. But she had discovered that it was a daunting never-ending task to keep up with the increasing mood swings and disruptive behavior of a man who had always been a kind a gentle person and respected leader in the community.
As we completed what seemed to be an inordinate amount of admission papers, I noticed she looked exhausted and very close to tears. She said it had been many months since she had enjoyed a good night’s sleep or had any time to take care of herself.
“Dad wanders off every afternoon looking for mom and when I try to tell him she passed away some years ago, he argues with me like he doesn’t even know who I am,” she explained. “He seems to get real restless every evening. I can’t even get him to come in and sit down with us for supper, she said with frustration in her voice.”
I explained that this is called “Sundown Syndrome”, something very common with Alzheimer’s disease.
“We anticipate the increased anxiety and have extra staff from 4 pm to 9 pm for this reason,” I assured her.
Part of the admission process included asking many personal questions that most family members find difficult to answer. They don’t want to admit that a mom or dad who has been a loving parent, doting grandparent and independent adult now can’t find the bathroom and doesn’t recognize family members.
It’s part of my job to coax all the information we need to provide the most appropriate care, so I gently alternate between asking intimate questions and explaining how the dementia process works.
Most of the time family members don’t make the decision to find respite care, adult day care or adult foster care until all other recourses have been exhausted – including themselves!
Sons and daughters have witnessed the slow decline such as missed doctor appointments, not paying bills or keeping the checkbook up to date, getting lost while driving around town, and not taking their medicines.
Family members don't address these needs with parents or close relatives as they should because the reaction is usually denial and/or anger that someone is interfering in their business. Sometimes it takes a serious incident such as a car accident or kitchen fire for the family to decide that immediate action is needed. Even then, the person with early or mild stages of dementia will argue and resist any intervention.
In other situations, a spouse or child has tried to be the caregiver for too long hoping that things will get better until everyone is totally exhausted and totally out of control.
Many times I’ve asked a family member to go home and get some rest before trying to finish the admission paperwork.
Today Mr. Black’s daughter is anxious to finish the paperwork, write me a check and get out before her dad realized what she was doing. She still feels very guilty and does not understand why her dad has changed. She offered that maybe it’s his medicine or something medical that the doctors missed in his examination.
“Maybe in a few days we can take him back home, but last night he hit my husband and had a look in his eyes that I’ve never seen. We are really afraid he will hurt one of the kids,” she said.
I made a mental note to provide 1-1 staff for the night and call the doctor in the morning for additional assessments and medication review. This was going to be a challenging case, but not unusual for our business.
Assuring her he was in good hands and walking her to the car, I told her to go home and rest and not to worry about her father tonight.
“Someone will be with him tonight and we’ll take good care of your dad,” I said as I gave her a hug and held the car door open. It was still very difficult for her to walk away and leave her dad standing at the window looking out - but not waving goodbye.
“’Bye Daddy”, she whispered, her voice tight with pain.
Later, he had gone berserk, smashed our picture window, upset the staff and jeopardized his chances of living at our facility. It would be my job to inform the family, get the window repaired quickly and follow up on his medical care and possible re-placement.
Each day at Teresa's Country Homes brought different challenges, difficulties and rewards.
Yesterday it had been a heavy rainstorm that had knocked out the electric and water for a few hours. Two of the homes had water from a well that depended on electricity to provide running water. The staff had followed Teresa’s severe weather precautions and filled the bathtubs with water and started a specific supper menu to be used when the power was out, but no one had anticipated that workmen on the roof had left a downspout directed straight into the basement window!
I got a call that water was running into the basement that was living quarters for the resident managers, storage for emergency supplies and the laundry room.
Not knowing the cause or what mess I would find, I rushed over and discovered the culprit downspout! Getting soaked to the skin in the process, I quickly redirected the downspout and gathered some staff to help clean up the mess.
Sometimes it was a medical call in the middle of the night for someone who had fallen or was complaining of feeling sick. I would respond to examine them and determine if they needed to be sent to the hospital or if we needed to call for backup to help lift someone back to bed.
Some days I would meet the doctor as he made rounds and I would draw blood for testing or collect urine samples per his order. Everyday I monitored the pulse of the homes and made notations in the charts to keep the medical records up to date and ready for inspection on a moment’s notice.
Keeping the homes at capacity was a very important responsibility that Teresa expected from me. This information was included in a weekly report I faxed to her. Already my contacts at local hospitals were set in place and at least once a week I made my rounds of all the social workers making sure they had our brochures and business cards in good supply.
At Teresa’s, I actually looked forward to the state surveys. Back then, we knew that Jeremy would come armed with briefcases filled with new forms, additional forms and supplies of old forms! He would leave no stone unturned from the dark corners of the basement to the smallest chip on the kitchen counter. Teresa would challenge even the minutest deficiency and Jeremy would counter argue the slightest deviation but he knew that Teresa expected the same attention to detail that he did.
Teaching families and staff about dementia was an ongoing function of my job. Even at the homes where every employee was given a constant stream of information about the devastating effects of dementia, there was always a situation that caused frustration or complicated situations that needed my professional intervention.
Every home knew that when a resident became persistently confused and agitated, they could call me for advice or assistance. Many times I would be wakened in the middle of the night to assure a resident that her cat was safe at my house or that Johnny was on his way home.
Sometimes we washed and dried the same load of washcloths and towels so a resident would feel a sense of responsibility as she folded laundry over and over again. Others helped make beds or set the table many times a day.
One stage of dementia/Alzheimer's causes a person to be so forgetful that they feel obsessed to ask the same question repeatedly. Occasionally, it was difficult to always remain calm and tolerant when we had to repeat the same answer to the same question every few seconds. Or, the answer wasn’t satisfactory.
“Where is my coat?”
“It’s right here.”
“Oh thank you so much. Where is my coat?”
“I told you, it’s right here.”
“You don’t have to get smart about it. Have you seen my coat?”
“See it’s right here on this chair.”
“Well now, how did it get there? Have you seen my coat?”
“Here put it on. It’s right here.”
“I’m that not dumb. Have you seen my coat?”
“This is your coat right here.”
“That’s not my coat. What did you do with my coat?”
When the staff would call me in exasperation, I’d usually have to go to the home and distract the resident by taking them to another room and redirecting the conversation to an imaginary trip to the store in their Buick Sedan. We would need to stop and get a gas for 25 cents a gallon and pick up a loaf of bread that cost 10 cents a loaf. By the time we got ‘ready’ for the trip, I’d have the resident in his pajamas and tucked into bed.
Forgetting ones age is common with dementia. Many of our residents didn’t even think about their age but the conversation often revolved about living with mom and doing chores at home. Often a resident would become worried because a parent had not come in for the night or returned home from work before dark.
The only way to relieve those fears is to go into their reality and confront the pressing problem.
Explaining that dad had to help with a sick cow if the resident had lived on a farm; or assurance that “mama” was tending to a sick neighbor or helping birth a baby was often enough to calm an upset resident who was trying to figure out the combination to the gate and go find the missing parent.
Most family members have received very little education about dementia and Alzheimer’s disease from the family doctor. No one has warned them that on some days dad will seems to be fine and other times he has a completely opposite nature. We had some very good books that we loaned out, but more often it was my duty to deal with each family in their own way and help them understand that the dementia would probably not get better and promises that their loved one would never be put into a nursing home or left with strangers to care for them was not only unreasonable but would eventually be impossible to keep.
I encouraged family members to accept that they were not responsible for, nor could they change the course of the disease as the affected person withdrew into a private but distant world of his or her own.
Times like this often create family clashes and disagreements about who is in charge and what will be done. It is important that legal steps are taken to protect the rights of all involved.
Those with dementia usually don’t show awareness of the disease but they do try to keep up appearances in their struggle to be their own person. They become demanding and argumentive - often becoming abusive in language and demeaner.
In order to help the residents keep their dignity we often slipped play money into their pocket and tried to keep everyone dressed nicely all the time. Sometimes a good looking older man with advanced dementia would look and act so normal at the gate that someone would comply with his request to unlock the gate, or he would just follow a visitor through the open gate and start walking down the busy highway oblivious to frantic calls for him to come back or of the fast moving traffic.
Dealing with daily life becomes increasingly difficult as people suffering from dementia and Alzheimer’s disease become increasingly incompetent and insecure in normal daily situations.
Sometimes at first, the only signs of mild dementia are a facial expression that is perceived as penetrating and non-committal answers to common conversations that don’t belay the lack of understanding.
“Oh how nice” or “That’s good,” voiced inappropriately are subtle clues they can’t hide. Pictures of food pasted to the refrigerator, pictures of a toilet on the bathroom door and pictures of clothing tapes to the dresser are clues that something is not right. Keys that used to always hang on the peg are now left in the garage or even tossed into the trashcan. Cash may be hidden in the bag of cat food. The same clothing worn day after day. Notes and reminders posted all around the house. Forgetting to pay for groceries. These are all signs that must not be ignored.
One morning as I walked in the front door at one of the homes, I heard a woman screaming as if she was in terrible distress. Immediately I knew that ‘Betty’ was getting her morning shower. We had multiple problems with Betty in this area. First of all, she denied being incontinent (wetting her pants) and we usually replaced her soiled underwear during the night with fresh clean clothing while she slept.
The second challenge was getting her into the shower or to cooperate for any washing up that included getting near water. Many of our residents had a primeval fear of water. We decided it must be the instinctive urge to survive and everyone knows that one cannot breath in water. It is a great mystery and unique challenge that prevails when caring for the elderly anywhere.
Betty was frail and weak, so the quick warm soapy shower scream was short lived. I always dreaded coaxing strong-as-ox, but confused angry men into the shower. They didn’t scream but they usually yelled obscenities and fought like angry bears in the bath. A few times the staff have been injured while trying to give a male resident a shower or bath. We found that it helped to always have at least two staff in the bathroom at bathtime. One to bathe and one to distract!
Many times I’ve found children having to bear the responsibility of both parents showing signs of dementia at the same time. This is the greatest burden of all times and my heart always goes out to families who have this hardship to bear.
Strong capable fathers become childlike, defiant and uncooperative. Gentle, soft-spoken mothers are confused and angry. They scream vulgar obscenities and order everyone out of the room when families try to have a discussion about current problems. They become combative with others and with each other.
The children must pull together as one to make decisions that parents would never have wanted their children to make. Family ties that are weak will break with the strain. Marriages that are not strong may fall apart. Health issues become evident and take their toll. Money woes may become a formidable mountain.
I have seen it all in the faces of our clients as I’ve tried to weave a strong helpline for families who have to deal with dementia, Alzheimer’s, death and dying.
Eight years of close experience with caring for the elderly have provided me with a wealth of information that I long to share with others.
As a member of Teresa’s Country Homes, I received an education I could never have obtained in a more profound way. I loved every employee, every resident and family member there. We formed a bond and friendship with each other and that will never be broken. Our impact on the community was extensive, powerful and extraordinary.
We were rewarded when comfort took the place of loss and pain. Education brought power and healing. At the end of each day, there was pride and satisfaction for a job well done.
Eventually, the business was sold to another owner and I moved to another state when life changes occurred and my goals and dreams moved forward.
The complete autobiography of my life in “Old Diaries and Dusty Angels” is taken from 42 years of personal diaries and journals. It depicts the heartbreak and survival when abandoned by my parents as a young child in New York City. The desperate search for my mother and pivotal moment when I found her.
It describes in shocking detail, the tenacious determination to protect my younger sister from our vicious, violent grandmother who raised us in perilously poor living conditions.
My book tells of the incredible stamina to survive, unusual resourcefulness to put myself through nursing school, a steadfast but failed resolution to make a bad marriage work and a sincere mother’s love and devotion to my children.
An entrepreneurial at heart, and not wasting a moment in this short lifespan of time, my book details the hard work and effort it took to win an elected position in my town, establish a profitable photography business and become a successful newspaper correspondent while never giving up my first love of serving as a dedicated, caring, skillful and competent licensed practical nurse.
I welcome your comments or questions at my listening post: lindasbook@usa.com
Take Care on the Journey,
Linda
