"We will stay in this house until we die ..."

"Don't get around much anymore."

We are having a huge debate in our family, about what is the best thing to do for Dad. This is happening all over America now and has in the past and will in the future. With his ability to walk failing, with his ability to read our notes slipping away (it is the only way we can communicate with him because he is deaf), with his interest in food beginning to fade, and with eight or ten medicines a day to deliver to him at the proper times--should he be in skilled nursing care?

His doctor gave my mother a firm lecture last week that he does. "Mrs. Chapman," he said, "I know your heart says no. But you must make this decision with your head. Your husband may fall, and if he falls now--its over. Please, please think this over carefully. Mr. Chapman needs to be in nursing care."

I'm with the doctor on this. Or am most of the time. I know Dad isn't safe at home, regardless of the 24-hour care, for which we pay a fortune. The job is too complex and the house has no ramp, no hospital bed, no lift chair, no comfortable couch from which it is easy for him to rise. Ive asked Mom if she would make these changes and remove the dangerous rug in the kitchen and she told me, after our visit to the doctor last week: "No! I'm still in charge of this house. That is a stupid doctor. Your father and I will stay in this house until we die."

Your first instinct is to say; "Okay, let's get to it. Shall I strangle you now and bury you in the backyard?" But you take a deep breath and realize that in her place you might want to do the same thing. Who wants to leave home? Have a spouse leave home and be left alone?

But what is best for him? He is confused these days, but he knows he's at home and he knows my mother is there with him. Sometimes, it is true, he thinks she is running a boarding house there, but it doesn't seem to bother him. He thinks she's amazing to be able to manage it all. Once, he asked me to show him the annual report of the boarding house so he could see how it was working out.

In nursing care his medicine would be dispensed more carefully and on a more regular basis. He would have nurses on hand and appropriate equipment to ensure he did not fall. He would have a visit from a doctor on a regular basis that would not require the now-painful work of getting Dad to the car, into the car, out of the car, into a wheel chair and up to the doctor's waiting room, each move creating a risk we might injure him.

Mom is adamant right now so it doesn't matter what I think. But my sister and I have decided that we will have to step in and incur the wrath of one and the sorrow of the other if we feel either of them is in imminent danger.

Ashley and Faye at McDonalds just a few months ago. We don't take him there anymore because it is just too hard for him to get around. I bring his favorite hotcake order home to him, in the famous Mcdonalds take-out bag.

This is a very difficult line to walk. You want the best for a loved one and there is a solution out there that you should take/make use of. But having him miserable for the last weeks or months or years of his life: is that a good solution? Or would he adjust, and live a decent life there and gain some weight because he would have more food available to him than he does at home. Mom has an eating disorder and still at the age of 88 and the weight of 98 pounds, counts their calories. Dad's weight has dropped 9 pounds in the last few months.

Meanwhile I'm the one that needs Valium and a rest home. I wonder if I'll live to care for them, or get an ulcer, have a heart attack, lose what is left of my mind, and die of the stress.

What to do, what to do? My sister and I wait and hope the answer will come to us, like an epiphany, and like an epiphany we hope for a little Divine help while we're at it.

Second Opinions: Seeking the Help of Another Doctor When Caring for the Elderly

My Dad looking happy recently as he posed for pictures with his long-time friend and barber, Al Galedrige. The men in the shop now help lift my father into the barber chair.

When you are ill, you need a determined advocate to help you through our health care system. You have to be your own GP and seek out answers to your own questions from the specialists your "primary care physcician" refers you to. But when you are ill, you are least able to do this. It is the job of your loved ones to do it for you. This week, I feel I let my father down.

I wasn't there to help him when I should have been.

Six or eight years ago he started to have "spells" where he wasn't sure what had just happened to him. He had all kinds of tests and our mother said the doctors "couldn't find anything." Nevertheless, he was put on a strong dose of an anti-seizure medication. I wondered why. So did his sister, my Aunt Helen, who laughed and said: "If they couldn't find anything wrong: why is he on anti-seizure medication?" I should have gotten on a plane and taken Dad to a new doctor and sought an answer to that question.

When my Mom stopped her after-dinner walks with my father and starting walking by herself, I asked her why. "Oh he isn't walking well anymore. He has osteoperosis you know." I said to myself: osteoperosis doesn't keep a person from walking. What's wrong with him? I should have gotten on a plane and taken Dad to a new doctor and sought an answer to that question.

When he started showing signs of dementia, my sister mentioned it to me. "But he writes such great letters to me," I said, busy with my own problems and happy to be in denial. "Yes but there is something wrong with him," said my sister. It wasn't until later that I learned my mother was writing the letters and my father was copying them out for me. Why didn't I get on a plane and come out to California and take my father to a new doctor? What was my mother trying to hide by writing his letters for him? I should have found out.

When I finally did come out to California to try to solve some of these problems I repeatedly asked his doctor, a gerontologist, these questions. If he has dementia: why is it impacting his walking? When I noticed the strangeness of his gait, I mentioned to his doctor that his mother, my grandmother, had done that same, odd, hesitation step in the last years of her life. She too had been diagnosed with Parksinson's disease and she too had developed dementia. I asked about the anti-seizure medication. To all of these questions, I received, over and over again, patronizing answers from my father's doctor. And he never really answered any of them! He knew better than I and he wasn't interested in any observations I had to share or questions I wanted answered.

When finally, this same physician refused to address a particularly annoying cyst on my father's hand ("He'll need a hand surgeon and it just isn't worth it. Leave it alone."), I made an appointment with my mother's internist to look at the cyst, knowing the internist was in a large group and could refer us to a doctor who could remove it. First of all, I learned the cyst can be removed by a dermatologist, so out went that proviso. I also addressed my unanswered questions to this new physician and much to my astonishment he told me that my father's cluster of symptoms indicated a specific disease, which affects the brain and which, if addressed early on, can be treated. "I'm just speculating," said the new doctor. "But I want to send him to a neurologist." When I told him that my grandmother had had similar symptoms forty years earlier, he nodded his head. "We think it can be hereditary," said he.

Now my father is almost ninety and the chances that he can be treated are slim. I've read about the disease on the Internet and treatment involves complex surgery, which he might not survive. I'm saddened and sickened that it took so long for me to seek answers to the nagging questions I had since his first "incident" of confusion and since the onset of his walking problems. Where was I and why wasn't I serving as his advocate?

The only thing I can do now, other than kick myself around the block, is to apply this lesson to the life that remains to my father and to the lives of my other loved ones and to myself. Don't be intimidated by a doctor who patronizes you. If you aren't getting answers to your questions, find another doctor who will answer them for you. Doctor shopping is perfectly okay. It is your life and the lives of your loved ones at stake and you can be as obnoxious as you want in your search for truth.

In fact you should be. Any doctor who doesn't help you in your search, should be fired, which is just what each of us is still able to do in this great land of ours. One thing there is not in America: there is not a shortage of good doctors.

I'm still angry at myself. But the new information I have, has at least given me a reason to renew my efforts to help my father. He can't do it. So my sister and I must do the best we can to help him in the years ahead..

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Smoke That Last Cigarette: Its Time For the Firing Squad at Your Funeral

Dad in his skivvies at Army Reserve camp one summer. He was preparing for a target shooting tournament at Ft. Ord, California, where mornings can be very chilly. The weapon, of course, wasn't loaded. Yet.

My father has been talking quite a bit lately about the funeral he would like to have. This is difficult for me. I am not yet able to face losing him. But he is 89and he does think about it and, even though he has dementia, it isn't illogical for this to be on his mind.

One day this week he told me and one of his favorite caregivers, a smart young nurse named Carmen from Argentina, that he wanted a firing squad at his funeral. The two of us got to giggling as we told him a firing squad was for executions and since at his funeral he would, presumably, already be dead he would have no need to be done away with in this fashion.

But as much as we were laughing and trying to get him to laugh with us, he was determined to tell us that whatever we said, he still wanted a firing squad at his funeral. "They shoot blanks in the air as a salute," he said. He was an award-winning sharpshooter on the Army pistol team for many years, so he doesn't use military terms lightly, even now that he's ill. And I'm sure he's been to a lot of military funerals. Still, the term firing squad sounded very funny to our ears.

"Will you get to have a final cigarette?" I wrote, asking him the question in writing because he is now totally deaf. "Will you wear a blindfold?"

Even he started to giggle at this. "You two girls are laughing about my funeral," he said as he, too, found himself unable to do anything but laugh. "But I know what I'm talking about. I still want a firing squad."

My Dad retired from the reserves as a full Colonel. He now has supplemental insurance from the military called TRICARE and with it he and Mom pay just $3 for most of their prescriptions. I should have deferred to a man smart enough to have his kind of investments and who nevertheless pays just $3 for his pills. He may not remember seeing my sister since she was a baby, but he still knows his military terms, as I was about to learn.

I Googled, "firing squad." It turns out there are two definitions, to wit:

1. A detachment assigned to shoot persons condemned to death.
2. A detachment of soldiers chosen to fire a salute at a military funeral.

"Okay Dad," I said to him when I saw him next. "I will make sure there is a firing squad at your funeral."

He looked at me carefully. Dementia has taken so much from him, but often, he still has his sense of humor.

"That's fine," he said. "But not yet. You'll still have to wait 'til I'm dead."


Dad asks about my sister Kimberly a lot, because right now he only remembers her as a baby. He wants to know what she has been doing since, and is always surprised to learn she is now a grandmother. She doesn't look like one here.

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Firemen to the Rescue: or Dad Goes Upstairs and Robin Learns a Lesson

Dad sits quietly, drinking his decaf, on a visit to Robin's new digs.

I must have put too much sugar in my coffee.

But it was raining and I knew my Dad would be stuck indoors most of the day. So, I had this idea for a rainy day activity. I've just moved to California and Dad hasn't seen my place. I thought it might help him understand that I was going to stay here if he could see where I lived and see that I had the Chapman family clock he gave me, right up on my mantel.

However, I live on the second floor and there isn't an elevator. How to get Dad up the stairs? How about asking a fireman?

During my years in news I learned two things about firemen: most of them are really nice (much nicer than policemen for some reason); and, they spend a lot of time sitting around in between responding to emergencies. This is especially true in a small town like Los Altos, California.

So, on this rainy Sunday, I stopped by the local fire station and talked with Mike the fireman and explained my dilemma. He excused himself and spoke with his captain, Matt, and they asked me when I wanted to get my father up my stairs.

"Would this morning be okay," I asked?

"How about fifteen minutes?" said Captain Matt. I suggested thirty, as nothing can be done with older people on fifteen minutes' notice. I gave them my address and off I went to the folks' house on Echo Drive.

Dad was taking his morning walk during a break in the rain. I wrote down my plan and let Dad read it while I ran in and explained it all to Mom. "Can I go too?" she asked, much to my surprise. She hadn't even expressed an interest in seeing it thus far. "And what is this about the firemen?" When I explained she had her lipstick and her coat on in record time.

Explanations made, coats buttoned, windshield wipers abuzz, we traversed the nine-tenths of a mile to my new place. The only concern was the expression on Dad's face. He looked worried.

"Are the firemen meeting us here?" he asked several times.

Los Altos Fire Department Engine Fifteen pulled up right on schedule.

"What? No lights and siren?" asked Dad. He was smiling now.

Dad meets Mike the fireman as Dad's caregiver Lynn looks on. The fire truck is in the background.

The firemen looked at the stairway and conferred for a minute and decided on a two-man carry. One held Dad's lower half and one held his upper half and, whoosh! Off they went.

Mike and his fellow LAFD fireman reach down to pick up my father to take him upstairs to my apartment.

I ran behind them and got this shot directly from the back. All you can see of Dad is his hat.

After that they were just moving too fast. For Dad and for my camera it was all a blur.

Ah, safe at last. Dad with fireman Mike.

One thing I hadn't taken enough time to consider, in my enthusiasm: how hard it is for Alzheimer's patients to grasp a new concept, a new place, even (as I'll talk about in a later blog) a new pair of shoes. New is hard for them.

He sat down and was very quiet. I served him a cup of coffee and a cookie, and when the Chapman clock struck the hour, I pointed it out to him, since he can't hear it anymore. He smiled but didn't say much and was looking worried again. He indicated a building outside and across the street.

"Is that the hospital?" he asked more than once. I couldn't figure out what was bothering him.

Mom, on the other hand was having a ball. Stunned that her daughter had such pretty things, thrilled to be able to peek into closets and bathrooms and cupboards and boxes from India on the coffee table, she got out a magnifying glass and looked at every last thing in the place.

"Is that the hospital?" my father asked again, pointing to the two-story house out my window. I shook my head, again.

Finally, after we'd all had enough I asked Dad's caregiver to help me get him down the stairs. I had sent the firemen on their way, knowing Dad could now hold the railing and get down the stairs, though coming up might have taken him hours, if he could have made it on his own at all.

So Lynn and I helped Dad descend and Mom held the umbrella when needed and we got Dad back out to the car. But now, oddly enough, he was really mad.

And the strangest thing of all was that he was mad at the firemen.

"Why did those sons of guns leave us like that," he said. "Who do they think they are snubbing us like that." "If they said they'd do a job, they should have done it." "I'm not going to accept their apology." "I'm going to call the city manager about those fellas. I guess they think I'm not good enough for them." "They should have helped me. I'm a war hero!" It went on and on like that all through lunch and finally I excused myself and went to drive around in the rain and run some errands, hoping if I got out of the house he would take a nap and forget about it.

It took me a while, but I finally figured out why he was mad. To my father, firemen mean going to the hospital. He thought the firemen were supposed to take him to the hospital and thus, when they just brought him up to my apartment and left him there and didn't come back he felt they had abandoned him and forgotten to finish the job.

Well, he's gone to the hospital twice in the past year and each time those big EMT/firemen guys show up at the house and pick him up like a piece of firewood and put him gently onto a gurney and what to they do? They take him to the hospital! So what else was he to think?

St. Robin learned a lesson. When dealing with an Alzheimer's patient, you should never do anything as precipitously as I did. I should have talked about it to him for several days. Driven to the apartment with him several times. Explained it again and again.

And then called the firemen.

As it was, my Dad got over it and was happy by suppertime. But he still hadn't forgiven the firemen. "You have a much better temper than your father young lady," he said to me over dessert. "I'm going to punch those guys out if I see them again," but he was smiling now and happy. My mother rolled her eyes. She had had a wonderful time seeing her daughter's little nest.

"Let me explain it to him later," she said. And she will try. My Dad trusts her and her explanation will help. But I'm not quite sure he'll ever feel quite the same about firemen.

Anyway, it was a good idea.

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Touching on the Roots of Honesty

My father with his pumpkins: on the porch before his illness was evident (ten years ago) and on the front walk after the onset of his disease. He was still an amazing gardener: look at the size of his pumpkins! The thing around his neck is a high tech hearing aid developed by a professor at Stanford University. He no longers wears it as even his residual hearing is gone.

We’re having a discussion about honesty in our family: actually, my sister and I are having the discussion with regard to our parents. Our elderly father has dementia of the Alzheimer’s type, a disease that is eating away at his mind and we are learning each day that dealing with him requires telling him some untruths. At the same time we are from a family that has always lived in parallel universes when it comes to honesty. My sister and I are trying to come to terms with what is right and what is wrong, without getting ourselves lost in a sea of situational morality.


Our father is from a long line of Scot Presbyterians. He taught us by example that truth, no matter what the consequences, was always correct. He was so honest, in fact, that if you asked him if he liked your new haircut, he would give you his honest opinion in every circumstance. “I’ve seen you look better,” he would say if that is what he thought. His sister, my Aunt Helen, was just like him. Once we were at dinner at her club in Aiken, S. Carolina, and in a loud voice she said to me across the table: “What is the real color of your hair, Robin?” The chatting in the club stopped, as it used to in those Merrill-Lynch commercials, and diners in the small room leaned forward to hear my response. I decided that honesty was definitely the best policy in this circumstance: “I have no idea, Aunt Helen. I haven’t seen its real color in years.” Everybody in the room laughed, as did my Aunt, and that was the end of the questions about my beauty secrets.

On the other hand, we were raised by a mother whose vanity made honesty a challenge. Since Mom turned 40, she has told everyone she doesn’t need glasses because by exercising her eyes she has learned not to need lenses, in order to see. The fact that now, at 87, she still tells this tale yet uses a magnifying glass larger than a refrigerator is something we don’t mention, except in whispers. She still tells us frequently that her hair has very little grey in it and that she goes to the hairdresser once every few months just to “touch it up a little.” Since, like her daughter, she hasn’t seen the real color of her hair in years, this is another story that would not bear much scrutiny. In addition, she has always told everyone who would listen that she was the smartest person in our family and that our father could barely cross the street without her help. When he got sick and she was required to manage the family trust we realized what an untruth this was. Dad had invested their savings in a wide range of instruments in a broad range of institutions, none of which our mother understands. Beyond these small things, I learned, at an important juncture in my life, that my mother lied about her values and that of all her lies this one was the most hurtful. Her devout Christianity shrouded a person who never put others first. I struggled with years of anger and depression before I could accept these things about my mother as weaknesses and thus learn to forgive her. I have had to do this without, at the same time, continuing to enable her and that has been a narrow line for me to walk.

You can see what I mean by parallel universes.

Truth is a challenge again, this time with regard to our father. The dementia he is suffering from gives him the fears of a child. One day he is agitated because his nurse puts him in a pair of sweatpants—for comfort—and he is convinced the family is trying to make him wear trousers that have no pockets for his wallet and keys in order to diminish his value as a man. Another day, he is upset because he fears a neighbor, who has done a good deed at the house, has designs on our mother’s affection. His anger about these things can be frightening. One of his nurses is especially creative in dealing with him. She will tell him she will call the neighbor so he can talk to the man. Then she pretends to dial her cell phone, pretends to let it ring and then tells my Dad, “He’s not home. I’ll call him tomorrow.” This simple pantomime works well because the nurse has taken his concern seriously, my father’s immediate need has been satisfied, and when the next day rolls around he has forgotten his worry about the neighbor.

But our mother doesn’t like this and has told his nurses not to “lie to my husband.” I have said to my sister that we are not lying to Dad, we are lying to Dad’s disease.

The Bible says that we should not “bear false witness,” and it seems to me that this is a good starting point for analyzing one’s use of the truth. Are we bearing false witness, when we shape the facts we tell our father to fit his illness? When we don’t confront our mother with her need for glasses or the true color of her hair? I don’t think so. I think we are attempting to act with compassion and kindness toward two damaged loved ones. I hope, if I live long enough, someone will do the same for me. And I hope, while they are at it, they will make time to take me to the hairdresser. You know, just for a little “touch up” at the roots.

Old What's-Her-Name

Just to keep us all humble, after I wrote the blog yesterday about the letter from my father in which he wrote "I love you," my sister called. She's in California keeping her eye on things for a few days and on the way to the restaurant, Marie Callender's, where she was taking my Mom and Dad for lunch to celebrate their 64th wedding anniversary, my Dad said, "I sure wish Robin were here." Not thirty minutes later my Dad said to my Mom: "What is the name of that girl I was telling you about who drives so well?" "Robin?" my mother asked. "Ah yes, that's right," he said. He does love me, I know that. But he can't always remember my name!

You have to remind yourself it isn't the man who has forgotten your name, it is the disease. Another example: my Mom's name is Faye, and one day a few months ago when my father was in rehab after a fall I kissed him goodbye at the end of a visit and started to leave. "Wait, wait, wait," he said and I turned back. "Who is Faye's husband?" He had a look of real concern on his face. I pointed at him and spoke so he could read my lips: "You are." "Okay, okay, okay." He smiled. He was just tring to keep things straight.