Rejecting the Privilege

A friend who is in the midst of the caregiver journey told me someone had declared to her that being an Alzheimer’s caregiver is a privilege. My response to that thought was not polite. Yes, adversity can make us stronger if we survive, but most tragedy is a short term happening with the event over and the repercussions left for us to decipher and deal with. Alzheimer’s goes on for ten or twenty years, eating away at the caregiver’s life and destroying the life of the person cared for. 

As time goes by, if you are a caregiver, the person you know and depend on dissolves, and the relationship of mutual love, respect and support is no more. Eventually the patient depends on you for the structuring of each day and for help with more and more personal actions. Emotional behavior is inconsistent and unpredictable. The time goes by and the life you had planned and hoped for becomes unobtainable. You are on a treadmill going nowhere. If you are a retired person, the future appears to hold no promise; in fact, you see no future. 

You want this to end, but then you feel guilty because for it to end means the person you are caring for must die. A care facility is a reasonable solution, but the giving up of that person you have loved and has been a companion to you creates guilt and a deep sense of loss. You will be physically separated. Life apart becomes a reality.  None of this feels like privilege.

Once the patient reaches the stage where he or she is in a care facility, life does get better for the caregiver.  Old pursuits can be returned to, but being without a partner or support person is lonely. That person still lives, and socially and emotionally, that isolates you even when included by friends and family. One part of you is missing.

Those of us who have been caregivers and survived do find ways to move on, do find new endeavors and new meaning for life. We all have causes and activities for which we have a passion and to which we can now dedicate our energies. Friends, grandchildren, unfulfilled dreams we can now pursue begin to reoccupy the space within us.  Volunteering to help others repays tenfold in social interaction and a sense of worth. A future does exist beyond the caregiving, but never would I call that long, hard slog a privilege. That I was there to care for my husband—yes, I am glad. I am not glad that we had to end our life together in such a way. I am enjoying family and my current pursuits, but I would enjoy them even more if he were here to share them with me.

 

Medication, Decisions and Hope

When Dan was first diagnosed, Cognex had just come on the market.  Cognex is one of a class of remedies known as acetylcholineterase inhibitors that temporarily slow the progress of the disease. The doctor prescribed Cognex (generic name Tacrine) for Dan, but the insurance company would not pay for it.  I wrote letters and made phone calls to the insurance company, and Dan’s doctors wrote letters confirming the viability of the drug.  After six months the insurance company added Cognex to its list of approved drugs.  His prescription was later changed to Aricept, a similar drug with fewer side effects and the one most commonly prescribed (generic name, Donepezil).

When, in the spring of 1997 Dan had moved into an aggressive stage as his Alzheimer’s symptoms increased, the doctor tried several medications.  Finally, Ativan, to be used only when necessary, was prescribed.

I found it necessary when we flew to Florida to help my father, who had lost his wife.  My father enjoyed conflict and set up both verbal and physical confrontations with Dan.  Dan would retreat to our bedroom, growl at me like an animal, and put towels or sheets in his mouth.  The Ativan helped him.  My emotional state was not ameliorated.

In the fall of 1997 when Dan’s aggression had increased and he spent time in the Mental Health Center in Duluth, a combination of Paxil and Resperidahl was prescribed.  The drugs gave him control of his emotions, and all seemed well.  Then Dan developed a twist in his spine and began to walk with a definite tilt to the right.  He did not seem to be in pain, but he was unsteady and in danger of falling.  The doctor recommended physical therapy. At first the therapy helped, but he became worse if we walked on our daily round trip to the mail box.  More trips to the physical therapist brought diminishing results.

During an appointment with the psychiatrist for a routine evaluation, we were sitting facing a desk and talking.  He did not giveDan a physical exam. I did not mention the spinal problem to him, but he noticed it as Dan sat down  “Looks like a side effect of Resperidahl,” he said and greatly reduced the dosage.  Dan walked straight again and regained his former mobility.  The problem would have continued undiagnosed and diminished Dan’s mobility for his remaining years, or as long as he was on resperidahl . Becoming knowlegeble about the side effects of prescribed drugs is a matter of self-protection.

Paxil also had a side effect, decreased sexual libido, a fact the doctors did not share with us for a year, despite my persistent question..   After the Paxil was prescribed our physical relationship declined rapidly.   I felt the doctors had cheated us by not informing us.  However, by the fall of 1998, Dan was in diapers and physically and mentally no longer interested in or able to have a physical relationship.

In the spring of 1999 Dan came down with pneumonia. When Dan was admitted to the hospital with pneumonia, the on-duty doctor prescribed antibiotics, but Dan did not respond.  The doctor seemed to feel that if Dan didn’t make it, it was for the best. I thought I could let go if he didn’t make it, but I found I was not ready for Dan to die.  “What future does he have, do we have?” I asked myself, but an overwhelming sense of loneliness would overtake me.  His presence still provided me with comfort.

Our family doctor ordered a change in antibiotics and took a more aggressive approach.  Dan’s decline stopped, and a rapid recovery followed.  After Dan was well, the doctor ordered a pneumonia shot—good for seven years.

I debate with myself the value of saving Dan. The Alzheimer’s brought a slow withering of the person and of our relationship, but a new relationship with a childlike person took its place, a person for whom I was entirely responsible.  Therein lies the rub.  I had to make life and death decisions for him.

Fortunately Dan and I had both made health directives that detailed how we wanted to be cared for in an end-of-life situation, what efforts should be made or not made to sustain life.

The final years of Alzheimer’s are not pretty and the medical decisions get more difficult.  Dan slept more and more.  His ability to walk steadily decreased.  Standing for a moment, he would close his eyes and remain in one spot.  The external world seemed to have no greater meaning if he had his eyes closed rather than open.

Dan’s coordination between hand and mouth faltered.  Sometimes he had food or drink in his mouth and did not remember how to swallow it.  Feeding him became a slow process.  His swallowing became more difficult and everything had to be pureed.

During the last months the hands on care greatly increased.    I still had my regularly paid help fifty hours a week, and by this time we were enrolled in a hospice program.  This meant weekly visits by a nurse, an aide to come in to bathe him if needed, and a variety of support people to give information and help.  A volunteer came several hours a week to sit with Dan. The hospice organization provided information on the dying process, responded to needs ranging from medication to equipment and supplies (most of it free) and provided comfort to patient and caregiver.  Dan had to be moved every few hours to reduce the risk of bed sores.  We moved him from bed to wheel chair to easy chair to bed.  The bed sores still erupted.  Diaper rash, yeast infections, and other irritations developed in the diaper area.  During the last weeks of his life Dan could swallow very little.

Near the end come the tough questions for every family.   Do you use tubes for food and water to keep the person alive?  Kidney machines, oxygen?   Dan’s health directive was that he didn’t want to be kept alive by extraordinary means.  What are extraordinary means?  What if we shut everything down and then a miracle cure came along that could have reversed everything?  (The Alzheimer’s Association has good literature on the final stages of Alzheimer’s and the decisions to be made.)

When my father was in his final days of life, we could not find a health directive although he had told a close friend he had one.  I was the one on the scene and I had to make decisions.  I was fortunate that my aunts and my brother were supportive and all voiced opinions compatible with mine when I surveyed them.  If there had been opposing views, a living will would have been a necessity.  Documenting our wishes is a gift we can give the family members faced with the choices.  Medical centers and hospitals have the forms, and filling them out is fairly simple.

Of course, until the final moment, some vestige of hope remains, and sometimes hope is rewarded. While Dan was alive, there was the hope that the miracle cure would be found, but being in line for the newest drugs and treatments requires persistence and chutzpah on the part of the caregiver.  I pushed our doctors for information, made telephone calls, and searched the internet for information.  Knowing what is good information and what is false is tricky, and checking with your doctor is always a good idea.

Recently health stores have been selling Huperzine A, an herbal product that has an acetylcholine inhibitor.  Some trials have been done with Huperzine A that suggest it may slow but does not cure the disease.

Another drug now used is Memantine, sometimes in combination with Aricept.  Memantine is described as a moderate affinity NMDA receptor antagonist.  Simply put, it helps restore signal transmission in the brain.

Curry has been studied because it contains turmeric.  People in India use curry in their cooking, and they seem to have a lower rate of Alzheimer’s.

Many herbal supplements are also touted, but no one should take herbal remedies, including Huperzine A and curry, without consulting a doctor.  The herbal supplement may react negatively with other drugs being taken, and most herbal remedies have not had the scientific trials and reviews of approved drugs.

The media often highlights some report that “promises a cure,” but very often these are initial observations or trials, and later results do not support the initial supposition.  As with any disease, there are many, many promises of cures that are simply hoaxes.  The caregiver has a minefield to traverse.  The family doctor is usually more than willing to provide the latest information on medicines and research.

Strides are being made in slowing and even halting the disease.   Someday there will be a cure.

Medical centers across the country have experimental trials for which patients can apply to take part.  The Alzheimer’s Association (1-800-232-0851 or www.alzmndak.org), your own medical network (ask for their Memory Clinic), and the internet are places to search for these studies.  On the internet use key words “Alzheimer’s Clinical Trials.”)  Most clinical trials will only take patients in the early or middle stages.  

Checking In to Check Out Care Facilities

As soon as Dan was diagnosed with Alzheimer’s, Friends and associates asked me where was I “going to put Dan.” Thankfully, my sons and daughters-in-law never said that. They simply said “Whatever decisions you make, we support. Let us know how we can help.”
I am forever grateful to them. Their support allowed me to explore options and deal with the changes in our lives without being pressured to make decisions that were contrary to my feelings and needs or to Dan’s.
By the third year after his formal diagnosis, caring for Dan when I traveled had become problematic. I found that placing Dan in a care facility at our travel destination gave me freedom to do what I wanted to do, offered an opportunity to learn about the kinds of care available and allowed me to compare facilities.
During the several trips to Florida to deal with my father’s health problems, my father was sometimes unkind to Dan and jealous if attention was not focused on himself. I needed someplace Dan could stay during the day. I was lucky. A newly built Alzheimer’s nursing home had a day care program. The nursing home was built with a central area that housed the nurses’ station, hair salon, large recreation room and other communal facilities. The residents met here for recreation: dancing, singing, crafts, reminiscing, and a long list of activities geared to the level of the patients.
From the central area, wings extended out like spokes of a wheel. The entry to each wing was made to look like a cottage porch with swings, flower boxes, and fake windows. Each cottage had its own kitchen, dining room, sitting room, and laundry. Each patient had a private bedroom, and the cottage residents formed a family group. The patients helped set tables, cook, vacuum, fold the laundry, and carry out other household activities. The cottages had exits into an outdoor area with extensive garden paths, and the patients could safely wander by themselves. The staff was specifically trained to deal with Alzheimer’s patients. They understood Alzheimer’s induced fear, aggression, and confusion, and knew how to respond. Dan enjoyed his days at this place.
During a trip to Cincinnati for a class reunion, I stayed with an aunt and placed Dan in a nursing home for two nights. The Alzheimer’s unit was on an upper floor with a large central area where residents gathered. Dan had a nice, private room. The staff was well-trained, but there were no communal units, and the patients were not involved with housekeeping tasks and other day-to-day activities. Some were sitting in the central area talking, watching television, or staring into space.
The first night Dan was there he would not sleep, and he walked the halls. The nurse on duty heard a mighty crash shortly after midnight. Dan had fallen. The nurse called me. She wanted to send Dan to the hospital to be checked, although he did not seem injured. I agreed. My aunt and I drove to the hospital. I was in agony picturing the confusion and fear Dan must be feeling. We arrived at the hospital, and I rushed into the emergency room where Dan was on a gurney. He was having a wonderful time: so much attention, a ride through the night in an ambulance with sirens going… I was very tired and was not pleased to see him laughing and enjoying himself.
I took him back to my aunt’s with me. The next day I debated whether or not to return him to the nursing home. Late in the afternoon I did take him back and talked to the staff. The staff was chagrined at what had happened. Given the fact that accidents do happen and the nursing home responded in an up front and cautious manner, I left him the second night. He was exhausted and slept through the night.
Other caregivers I have talked to have found other solutions. A friend whose husband had Alzheimer’s took advantage of an arrangement at a nursing home in a small, western Minnesota community that had an assisted living apartment available where she could stay with her husband. During the day he was part of the the nursing home program, and she was free to come and go. At night, he stayed with her in the apartment.
In many communities across the country, assisted living facilities have sprung up, and some have special Alzheimer’s facilities. Our own community had a nursing home that was poorly planned in terms of layout, has too few funds for making the environment homelike and stimulating, was often short of staff and the staff had not been specifically trained to care for Alzheimer’s patients.
Several group homes in our area care specifically for Alzheimer’s patients. A group home is the most appealing option to me because of the family atmosphere and the close relationship between staff and the small community of patients.
I always left open the option of putting Dan in a care facility. The physical demands of lifting Dan in and out of bed, changing diapers, getting him in and out of the shower, up and out of chairs, and on and off the toilet required a great deal of time, physical energy, strength and special equipment. In the later stages of the disease, I needed a lift to get him in and out of bed. Medicare paid for the lift.
Sometimes in the middle of the night he would try to get out of bed, and when he tried to stand, would slip to the floor. There came a time when he could no longer feed himself. I told my children that if something happened to me, they should put Dan in a care facility. They have children, careers, spouses, and financial obligations. The physical exertion and attention demanded would be an unfair burden to themselves, their spouses, and their children.
I believe that for each caregiver, when the stress becomes greater than the reward of caregiving, then it is right to make arrangements for the person to be elsewhere. You aren’t good for the person you are caring for nor is the situation good for you. It is time to let go.
Besides the stress to self, costs are another way to compare in-home with out-of-home care. As the patient’s needs increase, costs will increase for home care and will eventually equal or exceed nursing home care. Money becomes an increasing factor in the care equation. This is a time when longterm care insurance is useful. Regular health insurance and medicare do not pay the cost of “maintenance” care at home or in a nursing home. The cost of Dan’s care was not deductible from income taxes. Our retirement income was social security and payments from Dan’s retirement fund. Unless income and assets are limited, economic aid through social agencies or medicaid is not available. Major assets must be used up, or “spent down” to use bureaucratic terminology, which eliminates a future source of income and security for the caregiver. These are dilemmas all caregivers face. Talking to someone who knows what assets a spouse can keep (such as a home) is useful. Sometimes county social services can direct you to a knowledgable source.
One day at a time, decisions must be made.
To evaluate a care facility look at the staff to patient ratio, the rate of staff turnover, whether the staff is specifically trained to handle Alzheimer’s patients, whether the facility is secure, what kind of activity and involvement there are for the patients, if there is sufficient space for wandering, if the place is safe, and if the staff are kind and caring. (The Alzheimer’s Association has a list of guidelines for choosing a care facility.)

Caring for Someone Else’s Body

The necessity for me to comb Dan’s hair, brush his teeth and shave and bathe him happened a little at a time. It was disheartening to see him lose the ability to care for himself and time consuming to have to do these things for him.
In a conversation to myself I complained,“Bad enough to have to care for my body every day, now two bodies to care for.”
To lessen my resentment, our live in student, Dana, began to shower, shave, and dress Dan two mornings a week. Liz shaved and dressed him one morning a week. That left me with four mornings, and that improved my attitude.
Small changes made the job easier. Our dental hygienist gave us an electric toothbrush that made teeth cleaning more effective. Dan thought it a great joke to clamp his teeth onto the brush.
Over the years Dan had clung to the old fashioned way of shaving, but there was no way I was going to use the hand-held Gillette. I purchased a cordless electric razor. He was leery of the buzzing contraption at first, but gradually came to accept it.
Showering him was not a problem, but getting him in and out of the tub for his shower was. The solution was a bath chair especially made to slide a person in and out of the tub or shower. Equipment such as shower chairs, special toilet seats, and transfer belts are available at medical supply stores listed in the yellow pages in the phone book. (I strongly recommend a transfer belt that goes around the waist and that the care giver holds on to when helping the patient walk. It makes falls less dangerous.) Supplies and equipment are costly, but sometimes health insurance or Medicare will cover the cost.
Anticipating the day that Dan would lose control of his bodily functions filled me with dread, and I was not sure it would be something I could accept. An early incident took place in Menard’s home improvement center. Dan went to the men’s restroom. He came back, and I realized from the smell that he had soiled his underwear. I surmised that Dan pulled down his slacks and underwear and stood at the urinal. His bowel movement dropped into his underwear.
I was flustered. What to do? I hailed a male clerk and had him stand guard outside the restroom. I took Dan into a stall in the restroom and cleaned him up, rinsed his underwear in the toilet and packed it in my handbag. Neither of us was happy. After that, I made sure to line his jockey shorts with a pad when we went beyond the confines of home.
Before long, accidents were so common that protective underwear was necessary all of the time. Pull ups are expensive; the cost was about $900 a year, but they are tax deductible. I looked into buying them through a medical supply service, but the cost was greater and the choice of styles more limited than if I purchased them at the local discount store.
When Dan first needed protective underwear he rebelled but eventually reached the stage where he no longer noticed his underwear.
We used the pull-ons that have permanent elastic straps on the side, and inside that I placed a pull-up minus the straps, and inside that a smaller incontinence pad. When wet, the inner pads could be easily removed and disposed of while Dan was sitting on the toilet or standing and could be replaced with clean pads. I had a diaper pail by the toilet.
At first no one but me dared help him in the bathroom. At day care he sometimes needed to go to the bathroom or have a diaper change. A male staff member was preferable to a female, but for the most part he tried not to go until I was on hand.
When Dana came to live with us, her attitude had been so matter of fact that Dan accepted her taking care of his going to the bathroom. Eventually he accepted all help in the bathroom
During the period of time when Dan was having many accidents, I exploded: “At least you could try to make it to the toilet.”
I don’t know if he understood, but even after he had lost much of his ability to communicate, walk, or get himself up and down out of chairs, he seldom soiled himself. Perhaps it was because I had learned to recognize the signs. When he began to breathe fast and became restless, it was time to put him on the toilet. Then again, perhaps he understood my need and did his best to help. Sometimes, the connection between us was there.
I came to enjoy interacting with Dan as I bathed and dressed him. He liked tactile interaction and loved attention. We both laughed at the joke of his momentarily disappearing as I pulled his turtleneck shirt over his head. I talked as I shaved him, and he was pleased.
“I know you are still there,” I told him, and in his eyes I thought I saw a “yes.”
Once more we had adjusted.

Traveling with Dan

During the year or so before Dan was diagnosed with Alzheimer’s, he took long drives in the countryside.
“It clears the cobwebs from my mind,” he had told our son, Mike.
Maybe, as he lost his ability to sequence things, riding through landscape provided that sequence; things went by in order. After the disease was diagnosed, he continued to enjoy rides in the car .
In May of 1996, when we learned Dan had Alzheimer’s disease, we both felt trapped in the surreal place where bad dreams are made. We needed an escape, so that summer we took a short trip from Fort Francis to Thunderbay, Canada. Dan drove. The trip was relaxing and gave us time to enjoy each other.
We had planned to spend our retirement years traveling; the fact that we didn’t have much time now loomed in our minds. A last adventure together was an obvious way to expend our time. Our dream destination had been Greece and Crete, Scotland our second choice. Since every detail of travel would fall on me—planning itinerary, packing, maneuvering through airports and customs—we chose Scotland. We both had hereditary ties, and the language is the same as ours, more or less.
To further simplify matters, we traveled with a tour group. All lodging, food, baggage, and travel were the responsibility of our tour guide. I could devote my time to Dan.
Our trip took place in May of 1997. We flew to Glasgow, and covered both coasts and parts of central Scotland on a tour bus. Given the fact that Dan loved to ride, nothing could have been more perfect. He enjoyed the tour guide’s dialogue about the history and scenery, liked being part of a group, and snapped pictures to document our trip. We both enjoyed the chance to relax and share the pleasures of travel, but we did, at first, have trouble fitting in with the tour group.
Many of our fellow travelers were retired couples about our age. Also on board were two college students, the twelve year old granddaughter of one couple, two school teachers, and Frank, a distinctively unwashed, thirtyish young man from New York. At first people were friendly with us and sought to sit with us at dinner, the distinguished looking college professor and his wife. Dan could converse, but often he did not understand questions, and his answers were vague and baffling. I chattered, encouraged our dinner partners to talk, and acted the aggressive spouse by answering questions directed to Dan. People sensed something was not quite right, and after two days we were the next to the last member of the tour to be sought as dinner partners. Our unwashed companion, Frank, was the last.
The third evening’s hotel had three large tables set for dinner. Only Frank was seated when we entered the dining room, and I chose to sit next to him. As the tables filled the lack of options forced others to sit with us. We had a jolly time. We learned that Frank had saved for a long time for the trip. From then on people invited us and Frank to sit with them in the evenings. The last day Frank was squeaky clean, and he lined us up to take a picture of His tour group. We went home feeling it was our group, too.
We took other trips over the next two years, and we discovered that the train was a wonderful way to travel. The small, public bathroom in coach class initially made Dan, uneasy, but we worked it out. For part of the journey we had a sleeping compartment which gave us privacy. The compartment had a sink and toilet—not partitioned off but easier for Dan to deal with. Dan was able to manage dinner and breakfast in the dining car, and we ate our lunch in the privacy of our compartment. Throughout the trip, Dan enjoyed watching the scenery go by. We toured the east coast and made visits to relatives along the way.
My father’s health necessitated repeated quick trips to Florida. At that time airports did not have family bathrooms and I needed to have a male with us to help Dan. Many now do. On our Florida trips, waiting for delayed planes caused Dan to exhibit extreme anxiety and agitation. I switched from plane to car; we did not have long waits, we could stop to eat and sleep when Dan needed to, and gas station restrooms are usually for use by one person at a time and have doors that lock. Overall, people were accepting when a couple exited the restroom.
In the Spring of 1998 we made a trip by car to Florida, and in the Fall of 1998, a trip to Portland, Oregon to visit our oldest son, Rick. Rick drove back across Canada to Thunder Bay with us. A traveling companion was helpful, because if I left Dan alone he would get out of the car by himself and wander. In fact, I lost him once on the way to Oregon when I went to the restroom at a gas station. He turned up in an aisle of the station’s convenience store.
By the summer of 1999, if I locked Dan in the car with his seat belt fastened, he could not figure out how to get out. I traveled solo with him to Ohio, but the long drive was tiring for Dan. The change in sleeping places each night confused him, and the constant change of situation seemed to wear him out.
That December we again flew to Florida. Rick accompanied us to help maneuver Dan through airports and on and off the plane, to take care of baggage, and to watch him while I took bathroom breaks. We encountered long delays and crowded airports. When the call for pre-boarding came for the return flight, Rick and I decided that Dan and I should take advantage of the early boarding and use the plane’s restroom to change Dan’s pull-up lining Dan panicked in the small bathroom compartment. The two of us were smashed together, he struggled, the door flew open, and there we were as I wrestled to change his diaper. The boarding passengers were startled. I managed to put Dan’s his clothing back on, but he escaped and headed toward the front of the plane. While I called out, “No, don’t let him by,” people obligingly stepped aside to let him pass. Rick managed to reach Dan and bring him back to his seat. (That was pre 9/11/2001. Think what would happen today.)
“Mom, this is too hard on Dad, you, and everyone,” my son told me. He was right. Our travel days together were over.
In the fall of 2001 I took my first extended trip by myself, and in 2004 I took a three week trip to Greece. I had competent caregivers who came in during the week to help me take care of Dan and who could manage well if I was gone overnight. I missed having my husband with me, but I had the memory of those trips we had made together: We saw and enjoyed friends, family, new places, and each other. We did, after all, accomplish a small part of our shared dream to travel.

Alzheimer’s and Wandering (Keeping Safe)

Dan’s escape escapades became part of family lore.  They were funny but also, for me, indicated that some of Dan’s cognitive skills and desires were still operational.  Part of him was still there for me to hang on to.

Some of the events can be frustrating, especially if you find yourself left behind and stranded.  By spring of 1998 I was doing all of the driving although Dan still had keys.  When he went to a monthly writer’s group with me, it was not unusual for him to become restless, stand up, wander out of the room and then come back. After one meeting he became impatient when I lingered to talk to several people.  Suddenly I realized he hadn’t come back from his latest foray out into the hallway, and I dashed outside.   The car was gone.

He drove home, found I wasn’t there, and drove back into town.  By this time a friend was driving me home.  We passed Dan and immediately turned around and followed him.  He parked where the car had been before.  I ran to our car.

“Oh, there you are,” Dan said.  “I wondered where you’d gone.”  The grin on his face was beyond description.  He had triumphed over all of the forces that bound him.   I sympathized with his feeling of triumph, his moment of being in control of the car and his destination.

The Alzheimer’s patient’s ability to reason is impaired, but a sly cleverness develops, and whether at home or elsewhere, escape becomes a major objective.  When Dan was at the Mental Health Center in Duluth for evaluation, the staff had to keep a sharp eye on him because when visitors departed he would try to walk out with them. His demeanor was casual, and he appeared to be an ordinary visitor ready to leave. One party obligingly held the door open for him, and he made it as far as the elevators.

The day care center Dan attended for a year was very secure, and Dan wore a small device that sounded an alarm if he tried to go through an exit door.

One day when I came to him pick up, Sally, the director, came scurrying to my car before I had a chance to get out.

“Now don’t panic, but……”

I was less panicked than the staff.

Sally had been talking to Dan, turned to say goodbye to another client, seconds later turned back and Dan was gone.  A door from the activity center room that opened into a receptionist’s office was usually kept closed and was not wired for the alarm. The door was open, and the receptionist had taken a bathroom break.  Dan had slipped through her office, down a hall, and out the back door.  Staff scattered in all directions from the center to search for him.  Dan made it several blocks to the downtown main street where he was enjoying the moment’s freedom, oblivious to the fact he did not have on his winter coat although the thermometer was at thirty degrees.

Sometimes  he slipped out the door of our home and headed down our gravel road to the County Road—the one mile walk we did each day to get the mail.   In the first several years he could make this walk by himself and would come back on his own, but in time he became too disoriented to make the walk by himself.  During our joint walks he would speed ahead and sometimes reach home before me.  He would search the house.   “Where have you been?” he would ask me when I arrived home.

One day I stopped to talk with a neighbor, but an impatient Dan kept going.  I saw him pass our driveway, but I assumed that when he reached the cul-de-sac at the end of the road, he would turn and come back.  He didn’t reappear, and I began to worry.  I set out to find him.  I met him walking toward me with another neighbor.

When he had reached the end of the road, he had proceeded down their driveway, into their house and into the kitchen where they were playing cards with their two grandsons.  Dan, without a word, had circled the kitchen table and headed back toward the door.  Our neighbors were neither surprised or perturbed, but their grandsons were speechless.

My fear for Dan’s safety increased, and I found it difficult to complete any task at home when I had to be continually aware of Dan’s whereabouts.  We lived in the woods, and I was afraid he would wander off and get lost.  I installed  a storm door on the front door with a lock Dan could not work.  I installed a stop bar on the back door—the kind that are on hotel room doors that let you open a door only so far.  Dan could sneak from the house into the garage through the breezeway so I installed a dead bolt with the keyed release on the inside and the dead bolt knob outside in the garage.

When the dead bolt was new, Dan would try the door and when it wouldn’t open pound on it in anger.  Liz,a helper in Dan’s care, told him that the lock was broken, and unlocked it surreptitiously when she wanted to use it.  I never used deception.  One day when we were going out, I took out the key and unlocked the door.   “So that’s it,” Dan said.  He hadn’t bought Liz’s white lie.  He was just waiting for the answer.  I found it fascinating that he suspected the deception but did not have the cognitive power to reason out the mechanism.  I also realized that Dan was still a person, someone who connected with the people and activity around him.

I had found the solutions for keeping Dan inside; now I needed to find ways to let him enjoy the outside. In good weather Dan liked to walk on the deck that wrapped around our house on three sides, but there was nothing to keep him from heading onto the driveway and down the road or into the woods.

I fenced in an area of the yard just off the deck at the back of the house and put gates with sliding bolts on the other two exits from the deck.  Dan proved he could still work the simple sliding bolts on the gates, so we drilled a hole through each bolt and dropped a small nail into each hole that had to be taken out before sliding the bolt.  Dan was not able to figure out how to first take out the nail before pulling back the sliding bolt.

Once exits were secure, the summer of 1999 was heaven.  Like the parent of a child, I was always listening for Dan and aware of sounds of his presence in the house.   Now that the exits were secured, when I heard silence, I didn’t have to rush around the house in a panic and then rush to the garage, get in the car, and go speeding down the road to look for him.

More importantly, Dan had the independence to go in and out on his own.

An additional precaution I took when Dan first started to wander, was to order a Safe Return kit through the Alzheimer’s Association, and the Safe Return identification bracelet never left his wrist.  The kit includes a bracelet with the wearer’s first name and the National Safe Return 800 number on it, ID stickers for clothing, and a registration form for the Safe Return Program. If the person is lost, you call the 800 number, and if someone finds him or her, they call the same number, and you are connected. Now GPS bracelets are also available.

  For more information call your local Alzheimer’s Association or call 1-888-572-8566.

 

When to Take the Keys

I dreaded the moment when I would have to take Dan’s car keys from him; when I would have to confirm his incompetence. This seemed so cruel. I did not want to be party to such cruelty, make such an assault on his independence.

I was lucky. Over time he had abdicated more and more of the driving to me, particularly on trips out of town. I was surprised because he had always insisted on being the driver of the car, whether with me or with others. He was an intense and focused driver.

He continued to drive into town on our regular errands but increasingly needed directions.  One day he made a left turn in front of an oncoming vehicle. The vehicle stopped in time. Dan seemed unaware of what had happened, and when I asked him he had not realized the near collision.

“You almost caused an accident,” I chided.

From then on, I would suggest I drive, and he was always agreeable. Sometime after that, I could not find Dan’s keys. I looked in pockets, everywhere.  Some months later they showed up in the middle of our bed. I was astonished but decided not to ask questions. I quietly put them away.

Most people do not give up their keys so easily. The loss of freedom is not something anyone accepts easily. (I confess I dread the thought of giving up mine.) But sooner or later caregivers have to face the question of how to take the keys.  The dilemma is not only that of taking away a freedom, but also that you may end up having to be confrontative and become the villain or you may have to resort to subterfuge.

Deceiving someone with whom you have always had an honest and trusting relationship goes against everything you feel and believe; it puts  a chink in a relationship you have depended on. It makes concrete the fact the relationship is not what it was.

The dilemma becomes how to find a solution so that you can move forward.

Solutions to taking the keys that others have shared with me:

-Family members sit down as a group and tell the person he or she can no longer drive and thus collectively assume the responsibility—and blame. As any caregiver knows, the caregiver is the first object at whom anger is directed. Having group support helps.

-Have your family doctor inform the person that he or she must not drive any more, perhaps for medical reasons. The doctor can also inform the state Division of Motor Vehicles (DMV) and the person may be notified that his or her license is rescinded or that he or she must take a driver’s test. (Of course he or she may pass the test.)

-Have the police stop the  person for some traffic infraction and take the license.  Or the police may recommend to the DMV that the license be withdrawn.

Respite

Respite

For the first year-and-a-half after Dan was diagnosed, I could leave him home alone, but eventually the probability of his leaving something unattended on a stove burner, accidentally harming himself, or wandering off, made constant supervision a necessity.   I was trapped with Dan twenty-four hours a day.  I needed respite.

The social worker at our local hospital pushed for me to commit Dan to a nursing home.  Dan was physically active and responded to his surroundings and to people he knew.   I did not want to commit Dan to a full-time care facility. Furthermore, health insurance does not pay for what is termed “maintenance care.”  I would have to pay the full cost of a nursing home:  at least $70,000 then, now $100,00 or more a year, which was more than our income.

Given my own preferences and the dollars and cents of the matter, I looked for at-home care solutions. When I put an advertisement in the paper for someone to come twelve hours a week as a “companion”  Liz had responded.  I had advertised for a person to take Dan fishing and hiking.  Liz did not like outdoor activities, but she brought other things into our lives.  She understood Dan’s frustration and anger and helped me to be more accepting.   She was fast-talking and funny.  She loved to drive, and Dan loved to ride.  They were obviously a team as they covered the country roads and stopped for Dairy Queen Blizzards.

That first year Liz had Dan for three hours in the mornings on Mondays and Wednesdays  and for six hours on Thursdays.  On Thursdays they took trips to a wide variety of places within a one hundred mile radius: state parks, malls, the zoo.  Lunch at a cafe or at some scenic spot where they could picnic was a big event to Dan.

The wonderful relief of those twelve hours a week of freedom made me more able to cope.  I had the house to myself on Thursdays. I wrote, walked, and absorbed the quiet.  I didn’t run errands when Liz was on duty as that was something that Dan and I could do together.

Because I had time for myself, I enjoyed the time Dan and I spent together:  on our daily walks to get the mail, often we held hands, or on short hikes on the multitude of trails nearby.

Dan’s passion was fishing, but mine wasn’t.  I tried to take on the responsibility of getting the boat in the water, running the boat, positioning it at the perfect spot to catch fish, and baiting the hook.  It took me half-an-hour to thread a cisco, bait for lake trout, and if the boat motor stopped, I panicked.  Dan was frustrated and  frightened by my ineptitude.   We needed help.

I hired a college student to take Dan fishing.  Jake was a competent, kind, and patient young man. He and Dan had a good time together, and I had more hours to call my own.

That fall after the fishing season ended, I enrolled Dan at the Day Care program at the local nursing home several days a week.  I had thought Dan might be offended and feel demeaned at being enrolled in a day care program, but he wasn’t. Being accepted as part of a group was rewarding to him.

The cost was a mere $45 a day.  A bus picked him up around 8:30 a.m. and brought him home around 3:30.  He loved the bus ride.  I was ecstatic to have so much freedom, and when he came home I was glad to see him.

My ecstasy was short lived.  Dan had developed a series of inappropriate habits.  For one thing, he would rub his crotch.  This upset the staff and some of the women clients attending the program. He wore an alarm that sounded if he left the building, which he did consistently. Staff had to chase him down and bring him back.  In a report a staff person described how once when asked to do something, Dan threw a book on the floor in anger.  Dan was put on probation.

The staff was operating in a difficult situation.  When you entered the nursing home, a gauntlet of residents were sitting by the doorway watching people come and go.  The place where the activities were held was cluttered and unattractive.  Tables were beat up, equipment and supplies were stacked everywhere.    Activities were oriented toward women although there were other men.  When a trip to a shopping mall was planned, the director suggested that Dan would not enjoy the trip and should stay home. The compromise was that I would come along to keep tabs on Dan.

Dan continued to be a problem, and the day care staff reached a decision—they could no longer manage Dan.  The center’s activity director called to urge me to have Dan committed to a full time care facility.  She warned that if I was burdened with his care, I would become resentful toward Dan.  Her warning was not far fetched.  I made a point to remind myself often that Dan was not the problem, the disease was.  I had to struggle with bitterness, but over time that dissolved.  Regret would once in a while overtake me.

I looked about for other resources.  In some communities trained respite volunteers will come to your home for a few hours a week, but no volunteers surfaced in our community.  By good fortune, I learned of an adult day care program in a small city fifty miles away, and for more than a year Dan attended that program once a week.  The wonderful staff was supportive.  The one time Dan was aggressive and created a problem, the staff sat down, talked about it, and instituted a management  plan.

We stopped going because Dan needed more and more help in the mornings, and it became difficult for me to get us out the door in time to spend more than a few hours at the center.  Also, Dan was declining and was participating less and less in the activities.

I looked for and found another solution—someone in the health care field who could come for the summer and stay in our downstairs guest apartment.  Nurses aides and EMTs at hospitals and nursing homes are often transient.  Ron, an EMT/nurse’s aide in his mid forties, was referred to me via the local grapevine.  He was spending time in our community for the summer in order to take advantage of the canoeing opportunities.  He would be working thirty hours a week at the nursing home.  He was a considerate and helpful roomer and gave eight hours a week of care for Dan in return for housing.  Often he did extras for us—like sawing up three cords of fire wood.   He took Dan fishing, but Dan was losing the ability to handle a rod and reel.

We now had Liz for fifteen hours a week and Ron for eight.  I had twenty-three free hours, and Liz was willing to add hours if needed.

When Ron left at the end of the summer, I looked for a replacement.  A student attending the local junior college who had nurse’s aide certification moved into our basement rooms.  I was hesitant to take in a teenager, even one approaching twenty, but Dana turned out to be a gift.  In addition to the care time she provided, she often volunteered to cook, and her vitality and her recounting of her days added brightness to our household.  Dan would sit beaming while Dana and I chatted away.   I was delighted to be in touch with the younger culture again, and for Dan I suspect it felt like having a family life again.

Eventually in our community, as in many across the country, a respite volunteer program was organized, and in the last years of Dan’s life, volunteers were a great source of help and friendship for me and for Dan.  As Dan’s needs increased, I increased the numbers of hours per week I had paid help to care for him.  During the last year of his life, I had someone every day for a total of 50 hours a week.

Books on taking care of the caretaker suggest that friends and family provide respite help.  This is a fine idea if you have people willing to come on a regular basis and stick with it for the long haul—years, or if you have someone with the skills to deal with challenges when you are gone overnight or for a week.  However, many people feel inadequate to deal with angry behavior, toilet problems, and confused responses—problems hard to handle if you don’t have experience.   Friends and family can help in short-term situations.  Some nursing homes, hospitals, and respite programs offer short-term and overnight care.

For the long haul it is necessary to have someone whose commitment and expertise can free you from concern.  Through an agency you may pay from $18 – $30 an hour, depending upon the level of care.  If you hire someone on your own you will pay at least  $15- $20 in order to have someone competent.  If the person you hired does not have other clients or doesn’t operate her own business, you will have to pay workers’ comp insurance, unemployment, and social security.  If  that person makes less than $1000 a month and does not want income tax withheld, you can pay the social security along with your annual income taxes.

Respite care is not cheap, but it is necessary for the caregiver’s sanity.

Problems Receiving Comments

I know some of my readers have tried to post comments. Unfortunately they are not being posting, and I am not receiving them. I’ve tried to contact WordPress, but they have a backlog and cannot respond. I will keep blogging here until I find a more interactive site. I would like for all who visit this web site to be able to converse.

A book to read: STiLL ALiCE

I have just finished reading STiLL ALiCE, a novel by Lisa Genova. I recommend it to any caregiver or person with a close friend or relative that has Alzheimer’s. The story is written from the interior perspective of a woman with early-onset Alzheimers. The woman, Alice, was an academic, as was my husband, Dan, and I found the story paralleled ours in so many ways.

The portrait of those around Alice as they struggle to accept her diagnosis reflects reactions of most family members. Her three children are planning to go with her to a play.”What time is the play?” she asks and is told. A few minutes later she asks again, and the three siblings argue in front of her, as if she is not there, about how to respond. Son Tom uses the don’t worry about it route—we’ll get you there. Daughter Anna insists she remember—use it or lose it. Her other daughter suggests they just tell her when she asks.

My own initial reflex with Dan was the “use it or lose it” mode. My insistence on his performing when the ability was gone created frustration for both of us, but when you watch someone dissolving before your eyes, it is hard to admit neither you nor they have control over the matter. I did not want to admit that I was losing the Dan that was my partner, the person intertwined with my life routine.  Something was going to unwind me from my own reality.

Alice’s husband struggles with acceptance of the truth of his wife’s diagnosis.  He also faces the choice of being a full time caretaker or continuing his own highly successful and demanding career.  Some readers may find him selfish, but keeping your own identity is important, and his life will continue when she can no longer be a part of it. The choice is difficult, and I submit that no one should totally abandon their own identity.

Read this book and come to your own conclusions. More importantly, gain insight into how the world must seem to the person with Alzheimer’s; how unconnected and fragmented it becomes.