Sharin' helps

There is something about sharing, and I have been thinking a lot about it lately. I started writing this blog to give people a personal view of what it's like to have a loved one with Alzheimer's disease. Now I am at the point of wanting to hear from someone else. Yes, I know I can Google some words and come up with a bunch of information; however, I think what I would really like to read is some of your thoughts and/or experiences.

So, if you have been following along for a while, why don't you write to me? I can do as I do with my sister's material--that is, I can gently edit it and then post it for others to read. I have received quite a few responses to the blog in the form of e-mails, more than in the "comments" section. If you would like to respond, my e-mail is www.jcwells@gmail.com. I will look forward to hearing from you and being able to share your stories, too.

If I Had Known Then....

Our sister, Diane, is sharin' today:

As a child I remember my grandmother repeating the same stuff over and over. Each visit to the nursing home found her deteriorating both mentally and physically. I remember thinking, “This is what happens to old people.”

Now, as an adult, I have experienced firsthand three loved ones’ being stricken with Alzheimer’s Disease: my father-in-law, my mother-in-law, and now my own mother.

There seems to be a similarity that occurs with each one, slowly taking away their abilities to think and speak, as each stage progresses: the onset of paranoia, sundowning, up most of the night wandering, and the physical problems associated with walking (shuffling), balance, incontinence, fear of bathing, etc. As a caretaker, it is most important to keep your loved ones’ surroundings “as is.” Don’t make changes.

My experiences have taught me many things, but the one thing that I would like to share (since this is a sharin’ site) is that you, as a caretaker (and loved one), have to program your mind and heart that this disease will take over control of the patient’s brain.

One of the hardest times I have faced so far was when my mother-in-law spoke to me as if she were an angry sailor. Her words were harsh and hurtful. Someone who was once a sweet, Sunday-school teacher had become angry and mean. Now my mother, too, has brought me to tears with her angry words. But as difficult as it is, I must keep in mind that two minutes will pass, and she will not remember what she said.

You should teach yourself something that will help you get past these moments: count to ten, take a deep breath, smile, look up, and say, “O.K., Lord, what’s next on the agenda?”

Thanks, Dianee, for sharin' your heart and giving some good advice. Love ya!

Sundowning

“Sundowning” refers to people who become increasingly confused at the end of the day and into the night. It’s not a disease, but it is a symptom that often occurs in people with dementia. The cause is not known, but factors that may aggravate late-day confusion include fatigue, low lighting, and increased shadows.

The Mayo Clinic staff offer these tips for reducing this type of disorientation:

·Encourage a midafternoon nap or quiet time.
·Keep a night light on to reduce agitation that occurs when surroundings are dark or unfamiliar.
·In a strange setting such as a hospital, bring familiar items such as photographs or a radio from home.

People with Alzheimer’s often want to go home or to check on their children in the afternoon. Their behaviors for that time of day in the past will often be triggered, and they will want to repeat them now. For example, if the loved one formerly started preparing the evening meal about 6:00 p.m., then he or she will often feel that it is urgent to “get home and start dinner.”

Some distracting activity at this time may be helpful. Pop often takes Mom for a ride around the neighborhood for a few minutes when she begins wanting to go home. Usually, after a short ride, she is satisfied to be “back home” when they return to the house.

www.MayoClinic.com is a good site to find answers for health questions.

What Red House?

The next evening after the last entry, I went to visit Mom. I decided to try to discover how much she remembers about the red-bricked house we lived in for six or seven years when I was young.

When I first broached the subject, she could not recall the house I was talking about. (We have taken her by the house in recent months.) I continued to describe it until she began to show a slight interest. She acknowledged that she could vaguely remember living there, that “it was on the north side of the street, wasn’t it?” That's right!

I brought up several memories of living on 19th Street, but she did not appear to connect with any of them. Finally, I think she became frustrated, either with me for “bugging her,” or with herself because she was unable to remember what I was talking about. Finally, she had enough and called a halt to that discussion with this rationalization: “Oh, well, what does it matter? We can’t go back there, can we?”

Mom’s mother had a serious memory problem for the last few years of her life. Back then the nursing home people told us she had “hardening of the arteries.” Perhaps it was what doctors now refer to as “vascular dementia.” But what I remember about her memory loss was that it was more predictable than Mom’s. She appeared to lose happenings “in order,” so to speak.

For example, when we visited, for a while she knew all of us, Mom, my four sisters, and me. Later when we would go to see her, however, she thought I was her daughter. Then eventually she looked upon my youngest sister, six years old at the time, as her daughter. In her mind, according to the way she reacted to us, she was moving backward in time and reliving different periods of her life.

As she moved backward with the age of my sister for Mom, she also “lost track” of her second and third husbands. Mom’s father died when she was only fifteen years old; then her mother remarried. Eventually her second husband died, and she married another man. This latest one is the one she forgot soonest, and she worked her way backward to her first husband and Mom as a little girl. When we asked her what she did that day, she told us about all the chores she did that morning, how she milked the cow, washed the clothes, or went to the field to work, and then came back in to cook lunch for the hired hands or “the threshing crew.”

My grandmother and my mother are the only two people I have ever been around for long periods of time who have had significant memory-loss problems. I have visited in nursing homes with patients who remembered very little; but, of course, it is quite a different matter when it is your loved one.

We lost our dad suddenly at the age of forty-six years. We managed to survive through all the stages of grief, agonizing as they were. But losing Mom slowly is just as painful, in a different way. When I think, "I need to call Mom and ask her what she thinks about...," my hand stops in midair as I am reaching for the phone. Then I remember. "Oh, never mind. She doesn't know."

But I call anyway, just to chit chat for a few minutes, being careful to keep my voice light and filled with love for her.

Fond Memories

Do you know the Station Man, the Station Man, the Station Man?
Nancy and I sang these words to the tune of "Do you know the Muffin Man?" We were about six years and three years when we first moved to the red house. That's when Daddy and his father opened the service station.

By the time we attained the grand ages of nine and six, we had developed the quaint little habit of going to the restroom together. It only seems unusual looking back; at the time it was the most natural thing in the world for one of us to sing and/or dance in order to entertain the other one who was sitting on the toilet. The outer edge of the white enameled tub was several inches wide, as I remember it. So we took turns standing up on the edge of the tub to dance along and sing the "Station Man" song. As we danced, we waved one of Daddy's station hats to add interest.

I don't remember ever hearing Mom yell to us, "You girls better get down before you break a leg or arm!" Of course, by this time our third sister had made her appearance, so Mom was probably quite busy in the absence of a dishwasher, a clothes dryer, permanent-press clothes, etc.

But she always made a point to remind us when it was time for our father to be home. When she heard the pick-up door slam, she called out, "Daddy's home!" There then ensued a race to the front door, with two of us yelling at the top of our lungs, "Daddy's home! Daddy's home!" He held out his arms with big hugs for each of us and then turned to Mom, most likely with Vicky in her arms, to greet her with a big smooch.

As I remember times like these, I can't help but wonder what Mom remembers....Does she have pleasant memories at times, or are they all gone? The disease is infuriating, as well as heart-breaking. I think I'll talk to her about our time at the red house the next time I am with her. That makes me smile. Maybe I can get a smile from her!

The Station Man

I talked with an older lady friend recently, and she asked how Mom is doing. The friend is almost eighty years old and is having some problems with her memory, but she does not understand much about Alzheimer’s. I explained that Mom is on medication that helps keep her calm and congenial. The friend asked, “Does it help her memory?” The answer is, “No.” The medicine stabilizes her moods and prevents a great deal of the anger and agitation she has experienced in the past year. But her memory is unpredictable. No one can anticipate what she will remember.

My dad, along with his father, ran a service station when we were young. My grandfather closed the station upon the death of my father, after fifteen years of its being a “landmark” in the little town where we grew up. This occurred almost forty years ago. The building has been closed for quite a while, yet it still looked like it always did until recently. Now someone has opened a flower and gift shop, adding some decorative touches to the outside and making it look quaint and interesting. It really is lovely to drive by and see plants and flowers where the cars used to drive through to "fill ‘er up" with gasoline.

We all thought Mom would be happy to see the “station” in use rather than to see someone come in, tear it down, and build something modern (and unrecognizable) in its place. But that was not the case. One day Pop drove by the particular corner to show her how someone had fixed up the “station.” Mom’s response to us later was, “I wonder what your dad is going to do for a living now, since they rented that building out to someone else.”

At times like this, she thinks Pop is “a friend.” But at night she often worries about our dad. They used to close the station about 8:00 each evening. So now she wonders where he is. Sometimes she is slightly upset, as if he is just taking too long to close up. But at other times she seems to feel that he isn't coming home.

A few weeks ago Mom went through a time when she thought Daddy had abandoned her. She didn't call him Daddy (she rarely does that nowadays). She just called him "her husband." She said that she must have had a part in his leaving her; however, she did not know what she had done wrong. One of my sisters reassured her that she had done nothing wrong, that this was one of the dirty tricks her mind is playing on her! To have her think our dad might have left her is one of the saddest things to all of us.

Tonight I don’t know how to end on an upbeat note. Maybe I shall dwell on the fact that Mom is in excellent health and always glad to see us come in the front door!