Why didn’t my doctor tell me? — or who’s taking care of the Alzheimer’s?

This is the question my mother asked when the physical therapist left my parents’ house yesterday after working with my dad for about 45 minutes. “Why didn’t Dr. R ever tell me your dad might benefit from physical therapy?” she asked.

Gee. I don’t know. Maybe he was too busy prescribing antibiotics, inhalers and cough medicine.

In Dr. R’s defense, after the initial diagnostic appointment when my dad started having noticeable memory problems and a neurologist was consulted, an MRI done, and ultimately Aricept prescribed, my parents never really sought medical advice about the Alzheimer’s. And apparently, over the several visits they made to the doctor’s office for one thing or the other, the topic never came up.

In truth, it never seemed like Dr. R was monitoring Dad’s Alzheimer’s treatment nearly as well as he was monitoring his cholesterol levels.

It’s like the walker Mom bought for Dad at the medical supply store where they have been good customers for years. No one explained to her how high the handles of the walker should be. She just brought it home and Dad started using it.

Yesterday when the physical therapist was there helping my dad walk around the house with the walker, he asked, “Did someone raise these handles on purpose?”

Duh.

“Handles should be the height of the wrist of the person when they are standing upright with their arms down at their sides,” he said.

Dad’s handles were about five inches too high. Sometimes I feel like we are wandering around in a fog.

The medical industry is not kind to people who try to be self-sufficient.

In an earlier post I wrote, “Sometimes when we try to get help for Dad I feel like we are a ball in a bumper pool game. One professional evaluates and then bumps us to the next.”

Dad’s been diagnosed with Alzheimer’s for nearly three years now. It just seems like someone, somewhere along the way might have pointed us in a forward direction every now and then. Fortunately, we finally bumbled our way into the visiting physician, which led us to the visiting nurses, who set us up with the physical therapist, who believes he can help Dad improve his walking and movement. Who knew?

Time will tell, I suppose. And we will have to keep up with the exercises or Dad will backslide. But at least we have a small hope that one of these things afflicting Dad may turn around and start getting better instead of worse. I say, “Halleluia.”

Mom says, “Why didn’t anyone tell us before now?”

December 2010 — My dad uses his walker (before proper height adjustment) to visit family gravesites.

Managing expectations — Alzheimer’s ups and downs

The list of my dad’s ailments, challenges, or disabilities is daunting at times.

He’s had urinary incontinent since he received radiation treatment for prostate cancer ten years ago. More recently his incontinence has expanded to include occasional bowel accidents. I understand it is possible this too could be a result of all that radiation years ago. It also could simply be a progressive symptom of his Alzheimer’s.

Dad has difficulty walking. He has arthritis and had knee surgery years ago. Some of this could be attributing to his difficulty walking. He can use a walker for short distances if he is monitored.

My mom has to help my dad get in and out of bed. He seems to lose his coordination or strength and is no longer able to sit on the side of a bed and lie down. Mom discovered that the best way to get him in bed is to have him crawl up from the foot of the bed. He likes to sleep on his stomach, so this removes the problem of getting him to roll over in a small space. When he gets up, Mom has to encourage him to roll across the queen-sized bed from his stomach to his side. When he is on the opposite side of the bed, she helps him get his legs down to the floor and lets him pull himself up by holding onto her hands as she stands bracing herself against his pull.

It’s not ideal, but it works.

Part of the problem appears to be that Dad has lost strength in his left side. In fact, we are becoming more and more convinced that in addition to Alzheimer’s, Dad may have also suffered a small stroke at some point leading to the loss of strength on his left side. When Dad initially went to the doctor with cognitive problems in the middle of 2008, he had an MRI that ruled out a stroke. But he could have had one since. A stroke could also be contributing to the fact that Dad cries very easily and fairly often now. It could be attributing to Dad’s problem with eating and swallowing food and the fact that he sometimes “pockets” food in the side of his mouth during a meal.

I suppose a stroke could also be responsible for Dad’s seeming inability or reluctance to speak.

Who knows? How would you tell if his problems are stroke or Alzheimer’s related? What difference would it make?

Mom also believes Dad is depressed and has been for some time. I would be too.

Sometimes when we try to get help for Dad I feel like we are a ball in a bumper pool game. One professional evaluates and then bumps us to the next.

We started with a visiting physician because it has become so difficult to get Dad in and out of a car. Visiting physicians come on a monthly schedule. They don’t have time for unscheduled visits. So if Dad is sick it has to be handled through phone calls or some other way. We recently suspected Dad had a urinary tract infection, which is common with the elderly, and almost a chronic condition for Dad as a result of the side effects of his prostate cancer treatments. We called the visiting physician’s office who asked Mom if we have a visiting nurse.

After a few phone calls and a house visit, we now have a visiting nurse who will stop by and check on Dad weekly. The nurse who assessed Dad’s needs told us she thought he might benefit from therapy: physical, occupational, and speech. She talked about therapists coming three times a week at first. Three therapists, three times a week, a weekly visit from a nurse and a monthly visit from a physician is quite a lot of visits, especially when you consider my dad takes a lengthy nap in the middle of the day.

Mom settled on having just the physical therapist come for now.

The therapist happened to come yesterday to evaluate Dad’s needs when I was visiting my parents . The therapist thinks they may be able to problem-solve Dad’s getting in and out of bed issues and also help him some with his walking.

Here’s where the expectations come in. While the therapist was here, Dad was able to speak one-word answers to most of her questions. I start hoping. I think, maybe most of Dad’s problems are stroke-related. Maybe he can greatly improve with therapy.

And then the therapist started asking him questions: What’s your name? When is your birthdate? Who’s the president? What’s today’s date? How many children do you have? What are their names?

Dad did surprisingly well with many of the questions, although he had to use his little calendar reference to answer the date question and he couldn’t tell her the year. But he didn’t know how many children he had. And at first, he could only give the therapist my sister Annie’s name, who he refers to by her full name, Diane. When I stepped back in the room and he saw me, he was able to tell her my name. I suggested that he start with the oldest and tell her all our names.

“Who is your number 1 daughter?” I asked. Dad used to refer to us by our “number” if he was introducing us to someone. I’m the number 3 daughter. Dad got my oldest sister’s name correct, but was stumped when I asked, “Who’s next?” He struggled for a while and said, “Is Jerry next?” My brother is the youngest. With some additional prodding and some clues, he eventually was able to name all five of us.

Here’s the thing. I can’t allow myself to be falsely lured into believing that Dad is going to get better in more than an incremental way. I have to keep my expectations realistic and under control. I’m not going to get my Dad back.

Maybe therapy will help my dad get in and out of bed a little bit better, but it’s not going to help him always be able to remember my name.

Alzheimer’s — an endless stream of loss and decisions

Before my dad got Alzheimer’s I knew others whose parent had it.  I’d ask out of concern and compassion, “Does she still know who you are?” That was about the extent of my knowledge of Alzheimer’s—people forgot who their loved ones were.

What I didn’t realize is that Alzheimer’s is about so much more than that. The loss of recognition may be one of the last pieces. Before that, systematically, step by step, a person with Alzheimer’s loses the pieces of their lives.

Mom can’t find her car in the parking garage. Mom can’t find her way to where she wants to go. Mom can’t drive anymore.

Dad puts his head in the armhole of his shirt. He’s dressed for church and it is Wednesday. Dad tries to put his shirt on upside down. Dad can’t dress himself anymore.

Grandpa sanded the finish off the edge of the kitchen table. He carved into the wood with a knife. He took a pair of scissors and cut the emblem off of the middle of the shorts he was wearing. Grandpa can’t have sharp objects anymore.

Mom turns on the stove, turns off the answering machine, turns on the bathroom heater with towels draped over it. Mom can’t be alone in a room anymore.

Grandma has both types of incontinence. Grandma has accidents at inconvenient places. Grandma can’t go to unessential places anymore.

Mom drops her pills on the floor. She hides them in her uneaten sandwich. She can’t swallow them whole. Mom can’t take pills anymore.

Grandpa has trouble chewing and swallowing some foods. Grandpa can’t eat steak anymore.

Grandma “pockets” the semi-chewed foods she eats in the side of her mouth. Specialists consider this a choking hazard. Grandma can’t eat non-pureed food anymore.

We made another decision yesterday and took another step with Dad. Mom is investigating visiting physicians who can come to the house to care for Dad. Yesterday we met with a nurse practitioner from the VA, and a visiting physician from a private practice.

The VA has a program for vets called In Home Prime Care. A nurse practitioner came to my parents’ house to explain the program. They have a team of specialists that includes a nurse, nurse practitioner, social worker, dietician and psychologist. They visit patients in their homes and try to take care of their medical needs including prescription refills. They are not able to come for sick visits, however. The patient needs to visit the VA hospital for most procedures. The patient receives a visit from the nurse once a month and from the nurse practitioner once every three months. The social worker makes an initial visit and assessment, as does the psychologist. The dietician can be consulted as needed.

The visiting physician came with two medical assistants. They did an initial assessment of Dad: took his history, his vital signs, and recorded his medications. Because they travel a scheduled route, if you are sick, they will try to help you over the phone and are often able and willing to order prescriptions this way. They can send out a nurse or diagnostic equipment like an x-ray machine. Otherwise you have to visit an urgent care or hospital. The physician likes to visit once a month at first, but later can be seen at least once every three months.

I don’t know what my mom is going to decide to do, but she seemed to like the doctor who visited.

The only place Dad has gone this past year has been to doctors’ appointments. So if he stops going to those, he will stop going out. Anywhere.

Dad can’t go anywhere anymore.