What if IT happened to me?

Of course dementia can happen to anyone so yes I have thought about it. I am not sure that there is anything I could do to "prevent" it in addition to what I already do to live a healthy, active, productive life.


I have prepared our finances in a way that the next in line trustee would take control of Gregory and my personal and medical lives and decisions if I couldn't whether due to a form of dementia or something like a stroke or heart attack. 


If I began to feel dementia creeping in I hope I would recognize it, as least in the early stages, and take action. We have a large enough support group that someone would let me know if they thought I needed a "look see."


It would be very important to me then, as we did in the past for Gregory, to control all those things I can and provide for the future of those which I may not be able. Never easy but as I have written before, can't spend (waste) too much time anticipating what MIGHT be at the risk of missing the wonderful that still is.

Ounce of Prevention

In our condo, we now have Alert 1's medical security system. You've heard the "I've fallen and can't get up!" commercial? Well I decided that for less than a dollar a day it was worth the piece of mind to know that I could get help quickly if I was in trouble.

Did I say I? Well with Gregory's Alzheimer's I realized that I could not depend on him in an emergency. If I need help, unless I am really far gone, I could probably be able to crawl to the station in the bedroom, TV room, or kitchen and push the button for help. If I can not tell the responder what the problem is they will automatically send an ambulance and paramedic.

Then they will notify several people on our emergency list to inform them of what is going on. Our friends can not get to the condo quickly enough to help but they can get here to help Gregory until I return or until other arrangements are made.

So today the system had a test. A fierce storm ripped through Chicago, including Evanston, and over 600,00 people were without power for most of the day. The power went out at 8:00 am, we left the condo at about 10:00 am and by 1:00 pm we received a call first from Jan, and next from Roger, the two first responders on our emergency list.

The Alert 1 unit has a battery back up for short power outages but our outage had spent the battery and the Alert 1 people got a "bad battery" message. They tried calling us but not only were we away from the condo, when the power is out our telephone system doesn't work. So Alert 1 followed through and called the first responders to check up on us.

I called the company back and let them know we were OK. I also added my cell phone number to their information bank with the explanation that our land line does not work when the power is out. While the exercise seemed full of "Strum and Dram" it was good to know that the system worked well.

I called Jan and Roger back and said, "We have not fallen and if we had, we were able to get up!"

Setting Expectations

I am part of an online Alzheimer's Support Group called "Circle of Care" which is sponsored by the Novartis Drug Company. This is a chain of conversation which I recently had with Deborah, one of the facilitators.


INTRODUCTION: Hundreds of years ago, the medicine we have today would have seemed like magic. Today we know that medicine is all about science and each medicine works in very specific ways. How we learn about the ways a medicine might work is varied though – some of us gather information online, some from our MDs and some from friends and family – or maybe a mix of it all. In this discussion, we want you to think back to when your loved one first started their current medication for Alzheimer’s disease or dementia and tell us a bit about your expectations of the medication at that time.


MY REPLY: Right from the beginning the doctors said that Aricept and Namenda would only slow down the disease NOT cure it. We were surprised when Gregory began first Aricept his functioning improved greatly. If he had been functioning at 60%, he shot back up to 80%. Doctors and we were pleased. Then within a few months the functioning was on a downward roller coaster ride so we began Namenda. The same amazing improvement happened and the decline has been very slow since. We still do not expect things to ever be normal again but I do believe the medications have helped. Just recently Aricept has been approved at a little over double the dose and we have begun taking them. Here's hoping for improvement ... certainly NOT cure. P.S. I have always said, "If it would just stop here." But it doesn't. Does it?


DEBORAH'S COMMENTS: But, hope is always there....Michael, before you talked to your doc, did you have expectations of what the Aricept would do? If so, where did the expectations come from? I'm trying to understand how we build our mental map of what we can expect from these medications --where we gather our info to make the mental map. What do you think?


MY REPLY: I have always believed that the "patient" (or caregiver in this case) has at least as much responsibility for understanding the illness, the medications, the precautions, the prognosis, etc ... as does the doctor. Both must be part of the team that makes the best possible decisions and makes the best possible use of the information available. So many people will reply, "I just do what the doctor told me." I say, "Question and understand. Challenge if necessary. Do not accept blindly." I have also heard, "It is just too confusing so I didn't bother." I say, "Bother! If you don't understand ask again. A good doctor will take the time to help you understand and/or send you in the direction of getting the extra help to understand that you need. Have someone help you understand. Don't just settle."

What I knew about Alzheimer's Drugs came from discussions with our doctors and study online. From the beginning, I knew that Aricept and Namenda would not CURE or REVERSE the dementia. I knew that it would help to slow it down so the quality of life would last for a little longer. I also knew that everyone reacts differently within the general pattern of things. Therefore, I was not so surprised when the medications gave Gregory a jump start of renewed "availability." 

And I agree, Deborah, it doesn't stop but the hope is always there. Even if it is the hope to get through one day, one success, one failure at a time. Hope to be strong, supportive, able for your loved one. And storng, supportive, and able for yourself.

Alert 1

Well, I've done it. "I've fallen and I can't get up." Read on...

As I have aged, I realize that I pass milestones that place me in my parent's generation. Over the years I would hear them talk about various conditions, changes, ways of looking at things and either I would hear them but not listen or I would write it off to "my parents being my parents." Now I understand.

Like my parents, we've moved to a condo and enjoy not having to maintain the house and grounds. We nap. We like to be at home at night and snuggle in. At restaurants we sometimes share entrees. Entertaining takes a toll so we do it easier or do it less. Pills are organized into our "S M T W T F S" boxes, white for day and blue for night. We do not eat too late at night. Pardon me ... but if we do not move our bowels we are aware of it. And so on...

Dealing with Gregory's Alzheimer's diagnosis has presented many other age related problems with which I have had no experience. But I am learning. For example, this week I ordered a Medical Alert System for the condo. If something was to happen to me (heart attack, crack on the head, broken hip) I am not sure that Gregory would be able to deal with the situation. When he is under stress, he temporarily looses even more of his abilities and I can picture myself laying on the floor trying to give him instructions or worse yet, passed out unable to give him instructions.

So now we have a large white box on my bedroom nightstand with its very loud speaker and bring red button (which lights up) marked EMERGENCY! I have a fob that I can wear around my neck that also has a red emergency button and I have a watchband button as well. Both activate the big box in the bedroom. I haven't taken to wearing the remote buttons when I am at home yet but probably need to get into the habit.

When I tested the system, within a minute of pressing the button someone came on the speaker box and asked (to be heard all through the condo unit) "Are you alright?"

I answered, "Yes I am testing the system."

"Am I speaking to Michael?" (On their records because I am listed as the "primary user."

"Yes."

"Is Gregory alright also?"

"Yes."

"We will mark this as a test of the system. Remember when ever you need help call us by pressing your emergency button. Thanks for using Alert 1."

Last night as I was drifting off I was musing about the service. Peace of mind is good.= but they forgot to ask about Mariah, our cat.

Traveling for the Holidays

Our Thanksgiving holiday went extremely well. We spent five+ days in Michigan visiting Gregory's family. It was great to spend time together on the road and to be away from home and the accompanying errands and chores.

While in Michigan, I was extra attentive to Gregory's needs, tried very hard to anticipate problem areas and/or times, helped keep him organized in the guest room where we stayed, planned ahead to make sure I brought everything he would need when I packed.


I made sure that I assured him he was doing well and that he could count on me at any time including waking me up at night if necessary. Our family is well aware of Gregory's situation with Alzheimer's and how to interact with him in a way that maintains a calm atmosphere is supportive, respectful, and easy for him to navigate.

I took care of myself by exercising, not eating too much of the wonderful Thanksgiving food, and arranging to spend some of the time away from Gregory. It was good for him to spend time alone with his nephew and for me to get out with our niece to do lunch, Christmas shopping, and antiquing. One day Gregory and our niece went for a long walk a the nearby forest. I had that time to myself.


The holiday itself was spent his Gregory's brother and sister-in-law, nephew and his wife, niece and her daughter. Dinner was delicious, multi-coursed, and we didn't have to do any of the work. Time with his family is always enjoyable (even with family ups and downs.)

When back home, I was extra alert to what I call "re-entry." Very often it is not being away from home that causes Gregory trouble but rather arriving back home and his trying to get back into routines and home habits. I have learned to have few or no expectations for Gregory for the first few days home.


I will not ask him to do much even of those things he can do like folding laundry and setting the table. I unpack, do the laundry, and put things away. When he has problems readjusting I assure him that, "It is just the re-entry." That makes him feel better. When he wants to help I suggest, "Why not just relax for now. Go have some coffee and read your book."

Most of the above knowledge has not been easily gained and not instantly. It has taken time, observations, trial and error, apologies for being impatient and at times rude. But things, for now, seem to work well when we travel to visit family both for the holidays and other times as well.