Alton Slater's Page

I Was an Alzheimer's Caregiver
By Alton

About 15 of us held hands in a circle on Honolulu's Kaimana Beach. Several of us
offered memories of Muriel before her ashes were spread in the warm ocean. All
of us, even Muriel's daughter Diane and her son Bruno, seemed reticent about
showing any emotions. When my turn came, tearful emotions surfaced and were
quickly repressed. Later, my beloved wife told me she didn't say anything
because she would have cried uncontrollably.

If you have ever been to the Hawaiian island of Oahu, you would notice that the
sky is so very blue. The pollution is at a minimum, or it is quickly blown away
by the nearly constant trade winds. When the waters are not turbulent, you can
swim out and see colorful humuhumunukunukuapuapa and other exotic fishes
swimming beneath you. Kaimana beach is where the Waikiki Rough Water (WRW) race
begins in late summer. Almost four kilometers long, it is sometimes entered by
more than 1,000 swimmers. Diane never lost a WRW in her age group, and she
surpassed many in the younger groups. Muriel, too, had been an excellent
swimmer, but she was non-competitive. I have entered four WRWs, but I could
never compete with other men in my age group who had been on swimming teams when
they were younger.

With Muriel's ashes, we all climbed onto an outrigger canoe and paddled out to
deeper waters. The ashes were then released into the clear ocean water. I jumped
off the canoe and enjoyed the swim to the shore, all the time thinking of where
Muriel was now.

Muriel's deceased mother Queenie also had suffered from Alzheimer's disease.
When Muriel realized that she was being assaulted by it, she asked Diane to give
her Hemlock or an overdose of pills, to circumvent her eventual fate. Diane
refused.

Almost eight years earlier, looking for work, I had called a man who needed
someone to watch his Alzheimer's mom when he jogged. He asked me if I had any
experience with people who suffered from that affliction. I replied that I had
no such experience, and he suggested that I take a seminar with the Alzheimer's
Association here in Honolulu. That I did, and I also read the informative book
The 24-Hour Day. When I called him again, he said he had hired someone else. I
then placed my name on the volunteer list and was contacted by Diane, who needed
someone to take Muriel for a swim, along with Muriel's constant companion, a
black Lab named Peppa. I consented.

Before I even met Muriel, I realized she was the same woman I had often seen
walking the dog up and down Manoa Valley. Peppa was quite overweight, while
Muriel was unusually trim. In all likelihood, Muriel was feeding most of her
food to Peppa, as she was subsequently unable to remember any sort of feeding
schedule for her pet.

A few weeks after I first took Muriel and Peppa swimming, Muriel's live-in
college-student caregiver wanted out. Diane told us she needed someone to live
with Muriel, and my wife and I accepted the challenge. At first we only got free
rent, but after a few months when Muriel began to need extra attention, I asked
for and received a salary.

When we first moved in to Muriel's all-redwood home, we were unmercifully bitten
by ravenous fleas. Vacuuming and combing Peppa each day made the problem
manageable. Have fleas ever bitten you? If they have, you realize that the
itching lasts much longer than that of a mosquito bite. Each day I had to remove
hundreds of fleas with a fine comb, to keep them from proliferating. Skip one
day and there would be hundreds more to deal with.

At that time, Muriel was still able on occasion to communicate in a complete
sentence. The daily routine was as follows: Muriel would take her morning walk
with Peppa, who had waited impatiently for Muriel to arise. The dog would pull
Muriel along by the leash, and we worried that he would cause her to fall. Even
though her memory problems were progressing, Muriel still had an awesome sense
of direction and always came home at a reasonable time. Diane had told us about
the time Muriel could not find her auto at the Ala Moana shopping center, when
her condition was first challenging her memory. Muriel then left her auto at the
center and walked 40 minutes to her home. Later on, when her Alzheimer's had
progressed, she still would signal me to make the turn into her street. I guess
that part of the brain was still intact.

One morning about a year later, Muriel did not come home from her morning walk.
We called Diane, who went looking for her. A short time later Diane came home
with Muriel, who had fallen and bruised and bloodied her knee. Diane told us a
policeman had noticed Muriel on the ground and, upon determining she was unable
to talk coherently, had stayed with her until Diane appeared. From that day on,
we made sure Muriel never went walking without a human companion.

Once a week I would take Muriel to a group gathering at the Alzheimer's
Association . They offered drinks and food to the participants. Those attending,
including myself, sat in a circle throwing a large inflated ball to each other.
Some patients had progressed too far with the disease to catch or throw the
ball, but Muriel was still able to participate intermittently. Another weekly
event was a senior citizens yoga class taught by Asia, an Iyengar Yoga adept,
who gave the mostly over-60 ladies a hell of a workout. Asia allowed my wife and
me to participate in the group, although we were under the age requirement.
Muriel had taken Asia's class for years before her Alzheimer's began.

Each day Muriel and I would watch music videos on TV. Muriel loved men, and so
there was a natural attraction toward me. As we sat there watching videos,
Muriel would place her hand on my thigh and stroke it gently. Every once in a
while, my wife would notice what was happening, and she sometimes reacted.
Muriel had, during one of her occasional lucid moments, said to my wife, "I want
you to share your husband with me." In a way, that was happening, as I began to
spend more time with Muriel than I did with my spouse.

Muriel's best friend of many years refused to visit or even call Muriel on the
phone. I guess she had a fear of confronting the effects of the progressive
disease. Some other friends would visit occasionally, but stopped when Muriel no
longer recognized who they were. Sometimes Muriel would get a phone call from
another friend who suffered from the same affliction. We were amazed that Muriel
would talk to her on the phone for long periods of time. It would have been
interesting to hear the whole conversation.

Each day I would give Muriel a shower, as she had lost the ability to
differentiate between the hot water faucet and the cold one. Later on, I had to
watch her carefully when she went to the bathroom, as she would attempt to wash
her hands in the toilet bowl.

I eventually had to feed Muriel her dinner, because she lost her ability to feed
herself. My young grandson was living with us then, and they would have a lot of
fun laughing at the table. But Muriel started to choke during those sessions,
and we had to have them "cool it."

Muriel had such a great sense of humor; I always wished that I had known her
when she had her full mental facilities. I was quite fortunate to always have
Muriel follow what we planned for the day, and when her sometimes-strange
behavior needed correcting, I did not have problems with her. However, a woman
who took over for me when I had days off did not have it so easy. One day Muriel
hit her during a disagreement. This could have easily been avoided, as one
learns not to confront a person who suffers from severe memory loss. It is so
easy to distract him/her by just changing the subject. An Alzheimer's patient
reacts to the caregiver's emotions, even though s/he might not understand the
caregiver's communications. If you are angry or are experiencing any other
negative emotions, the patient will react accordingly.

Part of our daily routine was to take a swim in the ocean just before dusk. One
day at Kaimana Beach, Muriel, my wife, and I swam out, not realizing that the
current was quite strong. Lifeguards had left their posts for the day. Since
Muriel was a strong swimmer, we did not realize the risk involved. The three of
us swam out to the windsock about 300 yards away from the shore. My wife, who
was not a strong swimmer like Muriel, decided to swim back to shore, as the
current was pulling us out past the windsock. There is a cable on the bottom of
the ocean that goes out to who-knows-where. Swimmers follow it when they want to
swim far out and follow it back to be able to return to the shore. I
occasionally did that, but this was not the time. After my wife headed back, I
told Muriel we should turn back too. We started to, but every five strokes
Muriel would forget what our goal was and stop swimming. We were being pulled
right back to the windsock. I began to worry that she might drown, and that I
would be responsible. I yelled, "Muriel, you must keep swimming — it's getting
dark!" No matter how many times I implored her, Muriel would only take five
strokes and stop. She just could not remember to follow my instructions, even
though she most certainly would have if she had been able to remember them.

In earlier years, when she was more conscious of her mental plight, Muriel might
have chosen drowning as the way to end her suffering. However, as the
Alzheimer's progresses, the concept of taking one's own life disappears, along
with many other notions. Luckily, an outrigger canoe was passing by, and I
signaled the paddlers that we needed assistance. They helped us into the canoe
and scolded me for taking Muriel out so far. They knew Muriel's daughter Diane,
as she was a member of the outrigger racing team, and they knew of Muriel's
condition. I told them we had Diane's permission to take her out that far, but
after that incident we only swam close to shore.

Every time an Alzheimer's individual gets any kind of ailment, there is a marked
deterioration of his/her condition. Muriel caught a cold and promptly forgot how
to walk by herself. It became more functional to have two people escort her to
the bathroom. My wife would help, but when she was at work I did it by myself.
Diane or another woman would sometimes watch Muriel to give me a break. I would
run up the hill to the Manoa Recreation Center , not far from tall, verdant
mountains. Incredible cloud formations were common, and occasionally a double
rainbow would appear, to my delight. The rainbows here in Manoa Valley are
unsurpassed in their bright colors.

Well, running up inclines is not wise for those who have had back problems. My
back went out big-time, and I could not move at all without unbearable pain. My
wife had to take over Muriel's care, as I was confined to bed. Since my spouse
is not strong, the burden of lifting Muriel was too much for her. I recovered,
but Muriel's condition continued to decline. She no longer was able to walk,
even with assistance. I had to use a wheelchair to get her into the bathroom and
had to tether her while she sat on the toilet, as she could fall off onto the
floor and injure herself.

Diane left most of the decisions to us. Eventually, she asked if it was time to
put Muriel in a nursing home. In part because I was concerned about re-injuring
my back, I answered in the affirmative. Diane let us stay in Muriel's home at a
very reasonable rent for the rest of the year. For five more years I visited
Muriel twice a week at the nursing home. I did not ask for any compensation, but
accepted Diane's generous financial assistance for those visits.

At the nursing home, the wheelchairs were all lined up in rows. The more
advanced cases (unsociables) were placed in one area, and those who were still
social had activities and TV in another area. Most of those in the area where
Muriel sat were sleeping in contorted positions or moaning, or yelling one- or
two-word phrases. If a stranger looked thorough the window, s/he could conclude
that this was a torture area, where human rights were being violated. After a
number of visits, my wife decided not to accompany me anymore, as it upset her .

When I visited Muriel, I would ask her questions to jog her memory. I might have
to repeat a question many times before she would respond. "Who are you," was my
most-asked question, and occasionally she would remember her name. As the years
went by, she did not respond at all. I always wondered how she was able to sit
in such contorted positions without feeling pain. I concluded that the pain got
habituated and she no longer noticed it, or that part of her brain was no longer
communicating that particular discomfort. Some have said there is much pain that
we are experiencing under the surface, and when our mindfulness advances we are
then able to notice it.

There came a time that Diane told us the nursing-home costs were getting too
high. Fees of over $3,000 per month, plus extra assessments, were eating up
Muriel's finances. My wife and I agreed that Muriel would be moved into our
rented house. A room became available, as our grandson was attending school in
New York. I received a salary of $1,000 per month and was allowed to leave
Muriel for short periods each day to attend to other duties.

Muriel was unable to talk, or even move from whatever position she had been left
in. The difficult part was moving her to the bed from the wheelchair. Getting
her to the wheelchair was easy — I raised the hospital bed high and used gravity
to place her in the wheelchair. Lifting her back onto the bed took more strength
and effort because she was dead weight, in more ways than one.

Having healed my own ailments using the principles of macrobiotics, I put Muriel
on a cleansing diet. To my joy and surprise, Muriel began to speak, but
typically we could not understand more than one word, and that word did not make
any sense in context. I had been encouraged, but I soon realized that her
condition was beyond repair.

In order for Muriel to have a bowel movement, I would give her a suppository a
few times per week. Then, with the assistance of another man , I would move her
into the shower. We did not have a walk-in shower, so we had to lift her over
the bathtub onto a shower chair. If she had not completely evacuated her bowels
earlier, the movement continued in the shower. Rubber gloves were a godsend.

A few months later Muriel became too weak to eat, and it was unsafe to feed her
anymore. As she was unable to swallow, the food could go into her lungs. The
family did not want tube feeding to sustain her indefinitely . After a few days
Muriel started to hyperventilate, and continued for about 15 hours. She exited
her body on Christmas Eve. Muriel passed away while Pavarotti, her favorite
opera singer, was performing a Christmas concert on public TV. A tarry black
substance came out of her lower orifices , and I used many rags cleaning her
corpse.

Diane told me to call the undertaker, who said I would have to call an ambulance
and the police to certify that Muriel was actually dead. The ambulance arrived
with that usual obnoxious siren, and a woman attendant attached
electrocardiogram electrodes to various parts of Muriel's body. We got a scare
when there seemed to be a response on the monitor, but the attendant assured us
that that Muriel was really dead. I later learned that if you have hospice you
don't have to call the police or an ambulance. Instead, a nurse comes to your
home and calls a doctor, and the undertaker can then legally remove the cadaver.
I kissed Muriel with tears in my eyes, saying goodbye to a friend and high soul
whom l loved so much. I still think of her often. When I recall those memories,
I feel fortunate to have been able to be Muriel's Caregiver.