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.