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.

A Day in the Life of a Caregiveer

This morning Gregory told me that he had some blood today while he was getting dressed.

I asked, "Where?"

He replied, "On the bathroom counter."

Not erring on the side of too much information, lets just say I figured out what he needed, took care of it, and got a good laugh out of it as well.

Skip a Beat

Gregory and I were sitting out on the balcony after lunch. It was quiet and peaceful. Just below is the roof top garden and terrace. Flowers, trees, bushes, grass, and lawn furniture. No one was using the garden or terrace just then and it was pleasant to consider it our own.

I comment, "I am glad that there isn't an outdoor pool down there with people screaming and splashing about right under our window."

"Yes," Gregory replies, "And Chuck and John's."

Naturally, the conversation confuses me. So I ask for clarification, "Chuck and John don't have a pool?"

"I know, but I miss visiting with them."

I just sat there bewildered for a moment. I am beginning to think "Foolish Me," I should have just smiled and nodded.

Gregory asks, "Are you OK?"

"Yes, it is just that you need to skip a beat before you go on to the next subject. It confuses me."

Euphemistic But True

euphemism |ˈyoōfəˌmizəm|nouna mild or indirect word or expression substituted for one considered to be too harsh or blunt when referring to something unpleasant or embarrassing.
• • •
Was talking on the telephone with Jr today and he asked how Gregory was doing. I couldn't talk because G was within hearing range. So I just answered, "Right."
Jr continued "feeling out" how G was doing and wondered, "When Gregory seems to be having a period of difficulties, do they get better or stay at the low point?" 
My reply was, "Right."
I was thinking to myself that in the "ebb and flow" of Gregory's cognitive abilities (thank God - if there is one - his physical abilities have not suffered) it is usually "ebb."
Jr then commented that last time he visited, he noticed that, "Gregory wasn't as available as the visit before."
I said, "Right."
Well, without much actual discussion, MJr and I had a nice conversation and two points came out of it for me.
First, while euphemistic, "Not being as available" is a nice way of saying that Gregory's cognitive abilities continue to decline. He still has the cognitive abilities, he just cannot make them available when he need to use them.
Second, I wish that my conversations with Gregory could be as informative as the one I just had with Jr. I am thinking, "Right?"

Balance

I cannot get the balance
For this round
Of when to think for him
Or when to let him think
His own thoughts.

Existence

Yesterday Gregory and I ran an errand at the hardware store. He was at my side as we went from department to department and as the various store personnel helped us fine what we needed. Then we headed for the checkout.

Sometime between the heading and the checking out, Gregory disappeared. I realized it when I had my paid goods in hand and was ready to head for the car. No Gregory. I wasn't really worried and what good would worrying do anyway?

I looked outside to see if he had decided to wait by the car. No Gregory. I went back into the store and one of the clerks (who knows us) pointed towards the back of the store and said, "He went that way."

I walked half way back, called out, and from around the corner came Gregory. "Where were you? I asked.

"Looking for you," he replied.

I took him in hand (literally) and firmly but lovingly (and probably with a little relief, a little fear for the future, and a little anger) told him that he needs to stay with me. "In the few minutes it took for me to pay the cashier, you disappeared! That is wandering. That scares me. That can't happen. If need be I'll just have to keep you in sight at all times like a mother hen does with her chicks."

"I am sorry. I try my best."

"I know, but it is like when I have to deal with the 800 operator at the phone company and they apologize for making you wait and for messing up your bill and for not being able to do anything about it ... apologizing doesn't help!!!"

I became quiet on our way back to the car and stayed quiet once in. Gregory was quiet as well. I knew he felt bad but I just had to take a moment or two to regroup.

Finally I said to him something that surprised me when it came out of my mouth, "You know when things like that happen, I PRETEND I DON"T EXIST." Then I added, "I love you. I know you try. We'll be OK."

Managing our Finances

When asked for a survey, 

• What was it that happened that made you realize you needed to take over your loved one’s finances?
  
• What did you expect it would entail? What does it really entail?
  
• If you have been doing this for awhile now, what do you wish you knew then that you have learned now?

This is how I responded. 


I have found that over time I take on more and more of the responsibilities that I used to share with or which used to be done alone by my partner. This "taking over" has become a natural progression of being able to continue dealing with the twists and turns of Alzheimer's. My gradual "taking over" helps both of us feel less frustrated. One does what one has to do. Complaining and fretting doesn't help what is.

I am fortunate in having a well founded, over 35 year committed relationship with Gregory so we are "used to each other," and have build a high level of trust in our love for each other. He continues to be aware of what he is NOT able to do and looks to me for support, which I am able to give gracefully (most of the time.) I read on a web site that Circle of Care recently reviewed that if I am not able to be gracefully caring all of the time ... there is no question that at least I do care all of the time. He has been able to give up his grand piano, driving, cooking, and more with little or no fuss and I have been able to compensate. His quality of life and sense of self continues to be strong. From what I hear, this might be a miracle.

Running our daily financial affairs is no big deal. What was a big deal, especially for a same sex couple without the benefit of being legally married, was: 1) getting our trust in order, 2) getting our power of attorney for property and health care taken care of, 3) arranging for Gregory to receive Social Security Disability and Medicare at 55 when he was diagnosed with Early Onset Alzheimer's. It will become even more difficult when or if he needs to go on Medicaid. We had a wonderful elder care lawyer to help, the State of Illinois Department on Aging (it seems that most states have something like this,) and gratefully I am intelligent enough to figure our what we needed to do.

What do I wish I knew then that I know now? YOU CAN DO IT! The fear and depression can slow you down but YOU CAN DO IT! And there are people and organizations out there for the express purpose of helping you. Don't feel overwhelmed even though it is overwhelming. Take one bite of that elephant at a time, chew, digest  and before you know it that elephant will have turned into dinner. YOU CAN DO IT!

To Every Thing There Is a Season

I have found that with Alzheimer's Disease, to every thing there is NO season. We all have our routines. Most of us circle around our routines with tiny changes here and there. For example, as the seasons change, our routines change. We take longer walks, we dress differently for Summer than we do for Spring. The days are longer, the nights shorter, we sleep differently. We eat differently.

My latest awareness with Gregory and the progress of his dementia is that the seasons will change anyway but he is not be able to change with them. This Spring into Summer he has not been able to gauge what to wear, how to dress based on the temperature outside. The temperature means nothing, the weather forecast means nothing.

Jeans vs shorts, long sleeve vs short sleeve, heavy jacket vs light jacket ... mean nothing. When I suggest he wear an undershirt under his over shirt, the words do not translate. If I try to explain it only complicates things. If I get up and show him, it confuses.

Here I am again at a point where I find myself saying to myself, "I don't know how to do this." The tears are back, the sadness is back, the heaviness is back. I don't know how to do this. There is no answer. I don't know how to do this.

Yesterday, while at a meeting at the museum, I called to see how he was doing. I guess he got through breakfast alright but he answered, "I am not doing well." He sounded like something was terribly wrong. He sounded ill. He sounded distraught. He finally was able to explain (remember language doesn't work too well anymore) that he just didn't know what to put on so he could go out for a walk. I tried to suggest but it only confused. Finally I said, "Honey just put on anything, go outside, and see how it feels."

"I'll figure it out," was his reply. All I could do was tell him I love him, go back to my meeting, and hope for the best.

Just now as I am writing this, he brightly showed up and wished me, "Happy Birthday!"

"Why do you think today is someone's birthday?" I gently asked.

"Did I mess up again?" he wasn't able to explain. 

"What made you think today was a birthday?"

After a thoughtful pause, "Oh, I can't go through all of that."

Turns out he thought it was his birthday (which is 7/4 and today is 6/14) but I am not sure what prompted that.

I think I'll go take a shower and cry.

The lyrics are taken almost verbatim from the Book of Ecclesiastes, as found in the King James Version of the Bible, (Ecclesiastes 3:1) though the sequence of the words was rearranged for the song. Ecclesiastes is traditionally ascribed to King Solomon.

To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, a time to reap that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; A time to get, and a time to lose; a time to keep, and a time to cast away; A time to rend, and a time to sew; a time to keep silence, and a time to speak; A time to love, and a time to hate; a time of war, and a time of peace. With Alzheimers's ... there is only time ...