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.

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. 

Anger without Reason

3:  Anger without Reason 9-wordPress

Because her eighty-year-old father had been diagnosed with Alzheimer’s, a friend of mine helped her parents move from their home to a nursing home.  Her parents had had a long and compatible relationship, but now her father railed at his wife and treated her unkindly.  

“I want a divorce,” he shouted at her one day in the nursing home.   

Hurt and mystified, she packed her things  and went to live with her daughter.  

“Why are you leaving?” he asked as he watched her head out the door.  

My friend’s mother was astounded that her own husband was so uncomprehending.  My friend was trying to understand.  I assured her that her father’s behavior was not unusual.  He was trapped in a world he could not make sense of; he felt fear.  Everything and everyone seemed to conspire to confuse him.  He lashed out against the confusion.

I understood how my friend’s mother felt being on the receiving end of the lashing out. My hardest lesson was to learn to accept unreasonable anger directed at me.  Dan and I argued during our nearly forty years of marriage, not always gently, but on both sides there was an attempt at rationality, a recognition of lines we would not cross.  By early summer of 1997, Dan’s anger was escalating.  He would push or shove me and verbally abuse me.   My tolerance diminished.  I needed time to get away.  I hired Liz for fifteen hours a week.  

Liz, a person I had hired to at times stay with Dan while I took a break, was on hand to help when our private road association held its annual meeting at our house.  All went well until near the end of the event when Liz had to leave.  Dan became upset and stomped around amongst the guests.  In order to calm him I gave him his camera and urged him to take some pictures—photography was one of his passions. 

He marched away down the driveway, and as I tried to bring him back, he hurled the camera to the ground.  The embarrassed guests quickly said their goodbyes and left.  

Thrown objects became a regular feature of our life:  a plate of food was thrown so hard that it gouged the floor, a watch hurled at me left a gash in the bedroom wall.  

“Why?” I asked Liz.  

I expected no answer, but she gave me one:  “Because these things frustrate him.  Suddenly he doesn’t know how to use them anymore, doesn’t know how to tell time on the watch, doesn’t know how to work the complicated camera.”

She was right, and I tried to change my behavior.  Dan had for years kept daily records of the weather, and now I helped him enter the data each day on the computer. When he became restless during the process, I stopped the activity.  I didn’t want to. I didn’t want to admit that Dan had lost another skill, another part of who he was. I was having a hard time accepting the reality of his condition. I wanted to believe that if he would just keep trying....

I had  taken a baby step toward coping with his increasing anger, but I was a long way from being able to accept his anger. When he grabbed my wrists, I would break his grasp using strong force and angrily tell him, “Don’t do that.”  He would respond by pushing or shoving. If I then touched him to move or to direct him, he became more agitated and violent. My anger escalated his anger.   

 By late summer of 1997, I was desperate, and Dan was a threat to me. Taking him for a drive would calm him, but my anger was with us.  I would make stupid threats.

 “I am going to have to send you away if you don’t stop this, etcetera, etcetera, etcetera....” which, of course, escalated his anger.   He would open the car door and slam it as we drove and even try to grab the wheel. 

  The hospital social worker facilitated the meetings of an Alzheimer’s caregivers’ support group. I called her during one of Dan’s tantrums. “What should I do?”  

“Call the police,” she said. 

I envisioned the police coming and dragging off a kicking, biting, screaming Dan and locking him up—and then what? How would things change when they let him go? I suspected he would be more angry.

A woman at the support group at the hospital had taken her husband to a care facility that dealt with violent people. She told of his being put into a straight jacket every evening when he “sundowned”

(Better understanding of Alzheimer’s’ behavior  has led to more effective responses when dealing with aggressive behavior such as sundowning, a  term describing a common syndrome in Alzheimer’s patents where they become more agitated at sundown. I read that sundowning indicates the person is either thirsty—perhaps dehydrated—or tired, and I found offering drink or rest did alleviate the agitation. )

I did not take the social worker’s advice and call the police nor did I send Dan off to a lock-up facility where he would be put in a straight jacket.  I repeatedly took him to the hospital emergency room where he was given medication to temporarily calm him.  He was then sent home because the hospital had no secure area in which to place Dan to prevent his wandering away.  

After repeated trips to the hospital, the social worker and Dan’s doctor were encouraging me to look for a place to put Dan.  The social workers’ mantra was “Caregivers just don’t know when to let go.”

In the Fall of 1997, a trip to the hospital led to a positive solution.  The young doctor on duty suggested that Dan be admitted to the regional hospital’s mental health center where a psychiatrist and Dan’s neurologist could evaluate him.  The doctor believed that medications could control Dan’s aggression and make it possible for him to continue living at home.

The regional hospital was one hundred miles away.  We drove there one sunny morning, and Dan was admitted to the mental health center.  Both of us were interviewed by the psychiatrist and several of the Center’s staff.  

“What caused the anger?” I was asked, and felt defensive—as if I had caused the anger.  

Dan’s anger was usually a surprise to me and was not triggered by abuse or aggression on my part.  However, what slowly dawned on me as I detailed our interaction was that I did play a role by the way I responded.  Neither the psychiatrist or the center’s staff ever told me I had erred in returning anger for aggressive behavior, but I was led through a process of looking at the dynamics of the interaction between Dan and me.  

 Dan spent more than a week at the mental health center.  The first two days my guilt forced me to drive the two hundred miles round trip to see him.  The third day I stayed home.  The time at home alone was a gift.  I slept and slept.  I visited Dan again on day four.  He tried to convince me to take him home, but my guilt was far less than the relief gained by the respite from twenty-four-hours-a-day care.  The emotional support I was receiving from the Center’s staff strengthened my resolve.

Dan was put on two drugs that seemed to work:  Respiradahl for aggression and Paxil for anxiety.  On the eighth day, Dan was able to come home.  

Our time apart had given me time to think.  I told myself I must separate the anger caused by the disease from Dan the person.  We often tell our children, I don’t like your behavior, but I still love you. I realized that I was giving Dan his emotional cues and that all of my emotions were being reflected back to me tenfold by Dan. 

Over time my anger was replaced by understanding. I didn’t deny my own feelings of anger, but I tried to stay relaxed and calm, be patient, redirect Dan’s attention, and find a way to gain Dan’s cooperation.  If he grabbed my wrists when I was helping him dress,  saying matter-of-factly, “Don’t hold my wrists, that hurts, please let go so I can help you button your shirt,” usually convinced him to let go.  Tone of voice was all important. A silly or humorous comment or action from me often eased tension.  He loved silliness and jokes. 

  Life would never be what it once was, but thanks to the medication and my own increased understanding, our lives were stable.  

Note: Dan developed a twist in his back, although he did not seem to be in pain.  He seemly could not stand up straight.  After months of physical therapy we happened to have a routine follow up appointment with the psychiatrist. He noted Dan’s decisive tilt and lowered the dose of Respiradahl which solved the problem.  

Holding On

We struggled to keep the connection between us. We had said we wanted to travel. Well, we would. The two of us took day trips to scenic places along Lake Superior; we crossed the international border for an overnight trip from Fort Francis to Thunder Bay, Canada. We planned for the spring of 1997: in April a trip to Florida by plane, then by train to South Carolina to see Dan’s sister and on to New Jersey to visit his mother in a nursing home; in May a long-dreamed-of trip to Scotland.    Travel did not lessen the reality of Alzheimer’s. Dan thanked me for arranging our trip to Scotland, but after we returned, life became more difficult. As we descended into the confusing, unfamiliar landscape of Alzheimer's, Dan’s fear and confusion turned to anger. My hardest lesson was to learn to accept unreasonable anger directed at me. Dan and I argued during our nearly forty years of marriage, not always gently, but on both sides there was an attempt at rationality, a recognition of lines we would not cross. That summer of 1997, Dan became physically aggressive, would shove me or act threateningly, and was irrational when things upset him. My tolerance diminished. 

“Why don’t you just kill me,” he shouted at me.

I considered: Why not end it for both of us? Why not go out together, now? Get in the car, turn on the motor. Go to sleep. (Now I think of the grandchildren I would not have known, the family gatherings, the joy of remembering, the pain my children would have felt.)

A friend called me often, sensing my despair. My children called to see how I was doing. Their voices through the phone became invisible threads, holding me in place, but I knew I must seek help. 

I put an advertisement in the paper for someone to come twelve hours a week as a “companion,”  and the irrepressible Liz 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, picnicked at parks, toured zoos and museums and stopped for Dairy Queen Blizzards. I always envisioned them like Toad and his friends in Wind in the Willows flying over the landscape in Toad’s motorcar.

(Note: I would urge anyone feeling despair to also look for someone to talk to: a member of your church, a professional counselor, members of a local caregivers' support group. The latter are people going through all that you are going through. The Alzheimer's Association is always a good source of help.)

Taking Care of Legal and Financial Matters

Facing the fact that practical matters must be discussed and taken care of is hard for the caregiver.  I certainly didn’t want to heighten our awareness of what was happening.  To continue day by day in our normal routine helped stifle the truth, but the future needed to be addressed. I had received chart of the  four stages of the disease from the Alzheimer’s Association. Dan was in the latter part of Stage One, beginning of Stage Two. An obvious fact deducible from the Stage Two list of symptoms was that soon Dan wouldn’t be able to understand legal and financial matters.  Practical matters had to be taken care of while Dan could still sign his name and had enough cognition to knowingly assent to arrangements.   

I was the one hesitant to broach the subject.  When I did, Dan totally agreed.  We consulted an accountant and a lawyer.  I had a living will or health care directive, and Dan now made his.  Dan’s assets were put into a trust in his name so that the income could be managed to support him.   I very carefully went over and over each statement in the trust documents with Dan to be sure he understood. The lawyer did the same. We set up his trust so that when Dan’s pension was released in five years, it would go to the trust and I and my sons could manage the money.  I was beneficiary so that if he died, I would still have income.  Dan signed the necessary documents that gave me power of attorney.  He never hesitated, was solidly agreeable.  I was grateful.  

Because Dan’s assets would be sufficient for his long term care, my assets, including the house which we transferred to my name, were put in my trust so that if I died first, my children could inherit my assets.  I took other actions to ensure my financial power.  My credit had always been tied to Dan’s.  To establish my credit, a boat we purchased for Dan’s use was registered in my name as was the new car, and I applied for my own credit card.    I transferred the electric and telephone accounts to my name.  

We knew we were starting down a difficult road, and we were doing our best to eliminate those problems that we could anticipate.  The rest we would have to deal with as they arose.

 Perhaps Dan could have used more support as we muddled through legal and personal matters. One action I regret not taking that first year was allowing Dan to attend a support group offered by the Alzheimer’s Association.  Their Alzheimer’s patient support group allowed people with Alzheimer’s to meet together, talk about how they were coping, support each other and pass on information about resources. The nearest group to us, was in a city a hundred miles away.    At the time, making a two hundred mile round trip and taking a whole day of time seemed burdensome to me, but other’s with Alzheimer’s would have known what Dan was experiencing. Sharing a problem with a fellow sufferer in any situation is a great help because those present have the same bewilderment, anger, and fear that you do.  They understand.  As a caregiver I learned this when I attended our local caregiver’s support group that was organized in the latter years of Dan’s life.

In addition to a lawyer and accountant, the Alzheimer’s Association is a useful resource.  The National Alzheimer’s Association has chapters in every state and has centers and local chapters in regions across the states. These state and local chapters provide information, support, contacts and workshops,    The National Alzheimer’s Association can direct you to a chapter in your state. 1-800-232-0851.  The web site is www.alz.org.

Loss of An Interactive Partner

Recently I read an article on artificial intelligence and the ability to program computers to have a conversation with a human without the human knowing he or she is talking to a machine. The described interaction between the computer and the person reminded me of the conversations I witnessed between Dan and others after Alzheimer’s had manifested.  I was often amazed at the fact Dan could carry on conversations with people and that they would not realize he had Alzheimer’s.  It also made me realize how much of our conversation can be classified is really a means to interact rather than communicate content.  

Both the computer and Ted used strategies of association/feedback: ”Yes, I agree the climate is getting warmer”or noncommittal replies: “I really can’t say,” “That’s interesting,” or replying with a question: “What do you think?”  Before the Alzheimer’s manifested, Dan was such a precise and detailed person in conversations, that I was puzzled when he began responding in such a generalized way. I did not know this was a clue that he had the disease.

In the caregivers group I mentor, I see and hear the pain this is causing.  To admit your partner is no longer a full partner in  decision making or even a discussion of daily matters is tough.  If you have to deal with it on a daily basis, it can be damn frustrating.  Here is a person you can turn to for advice, comfort, insight, and companionship.  Now all you get is evasive answers.  The beginning of disconnect. I fought it.  I didn’t accept it as fact, wondered why Dan was so indifferent.  Oh, sure, I knew the diagnosis, but as he struggled with or ignored it, I denied it and was angry at the looming loneliness. Eventually my anger turned to grief; part of the emotional complexity that aggravated my days.  

How Do We Know? What Do We Do?

How do we know?  What do we do?

It sounds insane, but that summer of 1996, we hoped a CAT scan would show a brain tumor. You can cut out, medicate, or radiate away a tumor.  You can know an outcome, good or bad.  This hazy thing called Alzheimer’s:  “How long?  How to cope?  How do you die?  How do you live?”  

The doctors can’t give definite answers.  There’s no standard for length of the disease: progressions vary, symptoms vary.  Separating Alzheimer’s from other forms of dementia is tricky.  Absolute certainty of diagnosis is impossible:  you don’t have a brain tumor, don’t have Parkinson’s, and on through a long list of don’ts until the probability left is Alzheimer’s, but Alzheimer’s can only be verified by a post mortem autopsy.  

New techniques are being developed that involve brain waves analysis and biomarkers in which biochemical, structural, and metabolic factors are analyzed and may make diagnosis more certain.   

Dan’s CAT scan did not reveal a brain tumor.  More tests.  A day of written math, comprehension, and language tests.  Anger at the intense concentration needed. Finally total exasperation because the answers aren’t retrievable, the questions senseless.  Hostility.  The testing, after six hours, is called to a halt, and the tests for the next day are canceled.  Test results:  less than third grade math and general comprehension levels.....Fear and anger.  

Dan’s thoughts, I’m sure, were full of frustration and confusion: I do know I can’t sequence numbers, can’t remember a list, can’t remember meetings, changes in plans, faces.  I know I fake it.   When I call  my wife when she is up north, I have her letter in front of me with “yes” or “no” written in next to the most simple questions she has asked.   If she presses me for the more precise answers she expects from me, I am evasive.  I don’t know the answers.  I don’t know why she asks these questions. 

I found  letters from me along with notes for phone calls to other people detailing exactly what Dan would say.  Everywhere I found notes and lists he used to help him get through his days.

The neurologist confirms the conclusions:  Alzheimer's.  “But there are new drugs.  They won’t cure, but will slow down the process....Maybe in time...you may be lucky and they will find a cure....” 

 I can read on Dan’s face.... Yes.  Surely they will find a cure.    This terrible thing can’t happen. 

I am thinking the same thing.  We needed something to keep us afloat and so grabbed on to hope, defined by Emily Dickinson as “the thing with feathers that perches in the soul.”    

 Dan agreed to try Cognex (generic Tetricine), a Parke Davis product that was new on the market.  The company provided an 800 number and their nurse phoned us once a month to ask how we were doing. Every two weeks we had to go to the medical center where Dan’s blood was drawn to make sure there was no liver damage (a possible side effect).  Parke Davis sent information on the drug including a chart that showed a twenty-six week improvement for most recipients of the drug, then decline, and finally a progression no different from those who had not taken the drug.  Cognex was later replaced by Aricept (generic Donepezil), a product with a smaller dosage and, therefore, no need for weekly testing, but the effective time was still limited.  Six months, I told myself, that we could count on things being stable, and then what was the next possible hope?   

Dan was irritable, scared, and unable to plan.  He seemed grateful when I made decisions but became angry and irrational when things upset him.  His responses confused me. My responses confused him. At night we held each other.  

“I’m so scared,” he would tell me.  “Me too,” I would tell him.  We made love, desperate love, resisting dissolution.

 Dan’s medical leave of absence from the college had begun on June 1, 1996.  That fall we decided to sell our old house, close out that part of our lives, finish our retirement home, and travel.   Do the best we could.  If by the next spring Dan was better....what if he was?   He could rent an apartment near the college and go back to teaching. We had so much to do while we could.  We felt a need to hurry, but to where we weren’t entirely sure.  

The house sold, the movers came, and we now were full-time residents of our dreamed of home in the woods. Our lives had new boundaries and new routines evolved.  We made the biweekly trips to the local medical clinic for the blood tests.  I bought a pill box that had a space for each of Dan’s three pills a day—I still had to remind him to take them. That first year, if I left simple instructions when I substitute taught or covered stories for a local newspaper, Dan was able to fix dinner.  I turned down the  offer for a full-time writing job, and struggled to exorcise my resentment toward what: Dan, fate, the universe?  

Note: Believing/accepting the truth of an Alzheimer’s diagnosis is hard for both the person with Alzheimers and those around him or her who love that person.  It is a grief without death, a living sword that poises overhead slowly descending, prolonging fear and grief.  Caregivers often deny the extent to which a loved one has declined because it means giving up so much and it means telling that person he or she can no longer drive or be part of bridge club or other activities.  It means having to assume responsibility for cooking, making major decisions and a thousand other things.  For the patient the loss of abilities to do things is frightening and frustrating.  For the caregiver, having to take on so much responsibility is overwhelming, a reason for denial and a cause of intense anger.

Something Seems Wrong

I can’t say when the changes in Dan began, but most likely when Dan was in his mid-fifties. The earliest I can pinpoint is  February 1992—Dan was fifty-six. He showed me an intended final draft of the paper he was presenting at an event honoring a professor who had been Dan’s mentor. The paper lacked the clarity that was  characteristic of Dan’s work.  I didn’t criticize but did ask lots of questions. The version he delivered was more polished but pieces of research were missing.  He told me he couldn’t find resources that I knew must exist.

Other incidents increased my concern: Dan’s confusion over facts he knew well, his inability to remember how to do certain things. By the fall of 1994 I was confiding to our children that I believed something was wrong. We looked for logical explanations.  Perhaps depression. Dan’s mother, a very dependent person, had had serious depression for a number of years after Dan’s father died. That this brilliant man with whom I shared a life might have Alzheimer’s never entered my head; it wasn’t part of his family heritage. Depression seemed a probability.  Was he depressed because we were living in separate locations? He wasn’t thrilled about the separation, but it was to be only for two years until 1994.  

In 1994 he postponed retirement, and he became obsessed with retirement funds and money. He attended meetings about retirement and then tried to explain the information to me. I found glitches in his explanations. 

In March of 1995 he attended a conference in Memphis where, he told me, he had a strange experience. The walk from the conference center to his hotel was a straight shot, but when he came out of the conference center he hadn’t had a clue which way to go. I questioned him closely, but he shrugged it off. He had walked around and figured it out.  

I became seriously concerned when Dan began to have problems balancing his check book. His check book always balanced to the penny. Sometime in 1995 he began seeking the help of the cashier at the bank if I wasn’t around.

Our sons shared my concern.  They would call and talk to him to make sure he was all right. He was taking long rides in the car, “to clear my brain,” he told one son.  

During the spring quarter of 1995 he complained about students not paying attention, not understanding.  Dan had won awards for his teaching, was beloved by students, and had the most clear and precise lectures imaginable.  I asked a close friend to let me know of any rumors on campus about Dan’s behavior.  She called me early in the fall of 1995.  Several colleagues on campus had mentioned to her that Dan seemed vague and confused in casual conversations.  He was forgetting appointments and meetings.

Our son Mike’s wedding in October of 1995 was a turning point for our children. They witnessed their father’s inability  to respond to questions, to organize his thoughts, and to plan.  

“Maybe a brain tumor?” our son Mike wondered, and pressed me to do something.  

I urged Dan to see a doctor.  He resisted.  At Christmas he left our basement abode in anger and returned home because I was insisting that he seek an evaluation.   

In January of 1996 he saw our family doctor for a physical.  Dan called me feeling very happy.  He had passed with flying colors.  I had alerted the doctor of my concern and was disappointed the doctor had not identified the problem.  

In February I drove down and stayed with Dan for a week. I made an appointment with the doctor who told me physically Dan was in good shape.  When the doctor had questioned him, Dan had given no details that hinted of depression or other mental problems.  Was he having problems with his teaching? the doctor asked me. Yes.  The grapevine scuttlebutt was that Dan had only a handful of students in his class, and that students were complaining about his teaching. The following quarter, all but one or two students dropped his classes within the first two weeks.

I called the doctor, and he recommended that Dan return for a few simple tests involving sequencing numbers and recall. That May, as we sat in his office to hear the results, he pronounced the verdict. The University administration agreed that Dan should take a medical leave of absence, and Dan came north with me.  Alzheimer’s took over our lives. 

The Awful Truth

As a place of beginning, I will start with the moment of diagnosis.

The Awful Truth

The words spoken to my husband could not be true. I moved into the zone that momentarily shields from reality and waited for the specter to go away.

“You have Alzheimer’s.  I’m sorry....”   Our family doctor’s voice trailed off.  

“I’m so glad it’s over”  I was startled by the voice.  It did not sound like Dan.  

What was over?  What did he mean?  Had he known something was wrong with him?  Had his own denial covered his fear?

It was May of 1996.  My husband, Dan, was sixty years old, and we were in the midst of catching hold of our dream. Like many couples, Dan and I were often Janus-like, facing opposite compass directions, but we managed to coordinate our lives enough to move, however clumsily, in ways that offered mutual satisfaction and confirmed our unity.  We had both been firm in our decision in 1988 to transfer our lives northward.  We had spent twenty summers vacationing in northern Minnesota, and we loved the pine forests, lakes, and craggy landscape.  We had canoed and hiked many miles with our sons and had spent countless hours fishing on the lakes.  The Northwoods was a place of beauty and peace, a place that felt like home.

In the fall of 1989 we had found our “perfect piece of land,” deep in the northern Minnesota woods, and Dan drew the plans for our “perfect home”:  a music room/study for him on the main floor; an upper half-floor with my study and a guest bedroom; and in the basement a guest suite with bedroom and sitting room/library.  We envisioned an active life together hiking, canoeing, snowshoeing, skiing, and fishing.  Colleagues from our professional lives, friends, and family would come for extended visits.  We had plans to travel.   

In January of 1992, I had taken up residency in the basement of our future home—which as yet had no upper floors. Dan had continued teaching at the college and living in our “old house.”  He spent summers, quarter breaks, and Christmas “up north” with me. I taught part time and worked as a free lance writer.   From time to time I traveled down to be with Dan.  We were poised between our past and our future, and we were excited and full of expectation.

Welcome

For ten years I cared for my husband, who first showed signs of Alzheimer’s in his late fifties, after he was diagnosed with the disease.  I found during those years of caregiving that it was helpful to share the journey of caring with others in similar circumstances—people who understood because they, too, were experiencing what I was. Since my husband’s death, I have become a mentor for a group of people who are caring for family members with Alzheimer’s. They add to my understanding of the journey caregivers must make. Some days it can be lonely when you are a caregiver/caretaker. Sometimes you don’t know whom to turn to.  I would encourage all who are caregivers too find a local group to be a part of, but this, too, can be your group.  Hopefully the conversation here will be useful to you, and you can share your own questions, discoveries, stone walls, and moments of joy.