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.

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.

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.

Anger without Reason

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. 

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.

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 a 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.
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 http://www.alz.org.

Note: Believing/accepting the turth 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.

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