Faith

I have posted here before about the concept of "Faith." I have found my views reflected and strengthened and improved by the book: Faith: Trusting Your Own Deepest Experience, by Sharon Salzburg.

She begins the book with: "For some this will be a very different approach to faith. Many link faith to narrow-minded belief systems, lack of intelligent examination, or pain at having one's questions silenced. Faith might evoke images of submission to an external authority. Historically, the idea of faith has been used to slice cleanly between those who belong to a select group and those who do not. To fuel their own embittered agendas, fanatics harness what they call faith to hatred.

"I want to invite a new use of the word faith, one that is not associated with a dogmatic religious interpretation or divisiveness. I want to encourage delight in the word, to help reclaim faith as fresh, vibrant, intelligent, and liberating. This is a faith that emphasizes a foundation of love and respect for ourselves. It is a faith that uncovers our connection to others, rather than designating anyone as separate or apart.

"Faith does not require a belief system, and is not necessarily connect to a deity or God. thought it doesn't deny one. The faith is not a commodity we either have or don't have ― it is an inner quality that unfolds as we learn to trust our own deepest experience.

I like her look at what faith can and should be. Often I have said that for me, faith doesn't mean faith in any one religion or in a God, but rather faith in myself to make the right decisions and to trust myself to do the right thing. I have learned a lot from studying many religions, but I take a risk by admitting that I do not need a religion to tell me how to trust or do the right thing. I do not say that this is true for all, and I respect other's approach to their religion, but for me, my approach works well enough.

I write this here on my Alzheimer's Blog because "Faith" is what has helped me through the journey that Gregory and I walked (sometimes ran, sometimes skipped, and sometimes stumbled) for the last twelve years since his diagnosis of Dementia/ Alzheimer's.

Faith is what is helping me grieve and live with Gregory's passing (October 4, 2015) and with carrying on with my next chapter in life without him. As Starwars Jedi Master Obi-Wan Kenobi said: "May the FORCE be with you." I would give you my wish, "May your FAITH in yourself be with you."

To Use or Not To Use Drugs

... that seems to be the question recently in a number of readings I have done recently about treating Dementias, like Alzheimer's.

As a noun, a drug is...

(a chemical substance used in the treatment, cure, prevention, or diagnosis of disease or used to otherwise enhance physical or mental well-being) the word does not sound too bad.

As an adjective, drugged is...

(unconscious or in a stupor as a result of taking or being given a drug it sounds horrible) and maybe that is the difference. 

All too often, one hears stories about the overuse of drugs in memory care facilities as a way of "controlling" the residents so they are easier to handle. The stories also talk about the use of these drugs to make the job of Resident Care Associate easier, to prevent situations in which families can sue the facility, and/or to allow for a larger resident to staff ratio and therefore to allow the bottom line of a higher profit for operating expenses.

For the record, I am totally against the use of drugs for any of the above paragraph's reasons. It is inappropriate, inhumane, and disrespectful. This is no way to treat others and I certainly wouldn't want to be treated this way myself.

I agree that there are many other ways to handle Residents "responsive behaviors" by trying to find out and discovering why the Resident is angry, unhappy, resistive etc. 

This usually helps to solve the problem. This is so important in the advanced stages of dementia especially when the Resident has a reduced availability of language use with which to communicate or is no longer able to communicate at all.

But there are times, HERE IT COMES, when the use of drugs is appropriate and takes the best interest of the Resident into consideration. I believe this and have experienced at least four ways in which this is so.

When Gregory was first diagnosed with Alzheimer's some eleven years ago, we started with Aricept. The drug's hope was that it would slow down the disease and in his case I guess it has since he has been able to live an active, involved, quality life for ten years after the diagnosis. A caveat here is that I am accepting the diagnosis (Dementia/Alzheimer's) as all other possible causes of the symptoms we were experiencing were ruled out. 

When the Aricept was begun, a spike in Gregory's abilities was visible and the doctors were surprised and pleased since the drug was supposed to "slow" not "improve." In Gregory's case it "improved" but the improvement were short lived and after three or four months his abilities began to slowly fail. 

At this point we added Namenda to the mix and again there was a spike in Gregory's abilities, surprising the doctors. This time it lasted and only slowly declined for some 9 more years. We say that each individual's experience with Dementia/Alzheimer's is unique and possibly the way Gregory reacted to the drugs was unique to him.

During the eleventh year, Gregory's abilities began to fail dramatically. I took him off both of the Alzheimer's drugs for two reasons. If their purpose is to slow down the disease, what does "slowing" mean at the more advanced stages? Secondly, if we were able to clear the drugs out of Gregory's system and then reintroduce them some months later, would we experience the spike that we had experienced when they were first administered?

I use the term "WE" here because by now Gregory was no longer able to monitor his situation so my observations were pivotal. All of my decisions about Gregory have always been made with love and for his benefit, not for mine or anyone else. For example if a decision was good for Gregory but bad for me, I made the decision anyway knowing that Gregory could no longer change ... but I could!

The reintroduction of Aricept and Namenda did not cause the spike that I had hoped for. I was disappointed as you can imagine. But then things began to get so difficult for me to provide at home that I made the decision to find Gregory a place that could meet his increasing needs.

I might add that having to move Gregory had nothing to do with my health, or frustrations at providing for him, I would have gone on until I probably died first, as many caregivers do. But Gregory's needs became so great that I literally could not provide for them at home and by myself.

Now Gregory was living at The Lieberman Center, Special Memory Care Unit and we were both very happy with the care he was receiving. We talked about the move and he was accepting. To this day, maybe because of his difficulty with language use but I don't think so, he has never once asked "Why am I here?" or told me "I want to go home." Lieberman is his new home, community, and he seems content to be there.

As needs arrive I can talk with the Social Worker and/or Head Nurse and make decisions about Gregory's care. He can no longer communicate his needs so I have to be responsible for making sure he is being well taken care. The staff at Lieberman was and is wonderful and help me make decisions and when I needed more information or to be "educated" about a particular medical situation they are there for us.

So far we had had two good experiences with drugs, the beginning Aricept and Namenda.  Next the Medicare people decided to change his Aricept to the Exelon Patch. I am not totally sure of the reason but knew that the patch was easier to administer and also through the skin went directly into the blood stream without interference from the stomach architecture and chemistry.

Surprise. Once on the Excelon Patch, Gregory spiked in ability (although not to previous highs but based on his new lower level of functioning.) I was so pleased to see the return of some behaviors and abilities that had been gone and/or lost for a long time.

As the Dementia/Alzheimer's progresses of course the abilities and behaviors change. By now Gregory has NO language for his use so I have to make all decisions based on how he presents himself, what the medical blood tests say, his level of discomfort and/or frustration, his appetite, and other observations, etc.

Next, Gregory became unhappy, started crying a lot, would get into "babbling" and not be able to stop until he had elevated himself into a "tizzy." He was striking out and resistive in his responsive behaviors and that made it very difficult for the RCAs to change and clean him. It sometimes took four people to give him this support when changing a pee/poo and when showering or sponge bathing him.

In a very hard decision on my part, and one that was supported by the nursing staff and carefully explained to me and very carefully administered to Gregory, we began Gregory on a low dose of Risperdal, an antipsychotic drug.

It took him about a month of being sleepy, lethargic, "out of it," until the level of drug could be found and until he could get used to the side effects. Every day I would visit and hold his hand. Sometime he would be awake, other times awake but not present, other times asleep. When he was "with me" I would explain that he was feeling so sleepy because of a new drug he was taking to "make him better." I promised him that it would slowly get better. He seemed to understand or at least trusted me as he closed his eyes and drifted off again.

Short of a month later, Gregory was back with us. Happy, content, cooperative, not resisting, not having any need for responsive behaviors. His life was good again and some of the quality had returned. 

It was a wonderful decision and worked well for Gregory at his advanced stage of Dementia/Alzheimer's. This lasted for about a year but now some of the old difficulties have returned. Perhaps as the disease progresses or perhaps the Risperdal becomes less effective, so we have decided to increase the dose a tiny bit to try to offset some of Gregory's resistive behaviors. 

At this point one cannot look for other ways of dealing with the resistive behaviors short of NOT bathing him, NOT changing his pee/poo pants, NOT getting him dressed in the morning, NOT trying to get him comfortable in his Broda wheelchair as the fear of his grabbing you and hurting you.

Before the Risperhal he did grab a RCAs wrist, twist, and sprain it. He was not being violent just frightened, or confused, or angry. But none the less he hurt someone else. Recently when I was too much in his space, he pushed me away not injuring me but breaking my glasses (which I now am more careful to protect.) 

So the long and short of drug use, in my opinion and experience, and in Gregory's experience as well since I now speak for both of us as he is no longer able to: the careful, studied, loving use of drugs at various stages of Dementia/Alzheimer's can provide helpful, respectful, caring results.

At a certain time in the progress of the disease, one must make tradeoffs to provide a safe, comfortable, content life for the person who needs it. As I mentioned in a previous post, the words of Dr. B sums it up for me:

Several times Dr. B referred to Gregory at "That poor guy..." While that made me sad it did emphasis some of what Gregory is probably still "suffering" because of his level of awareness combined with the level of his dementia. For example, "That poor guy cannot process what he is experiencing because of his lack of language. So if it is other than a very basic, over learned, instinctual experience, the experience probably does not make much sense to him."

Another example Dr. B gave is that Gregory seems to demonstrate a certain level of anxiety, fear, and discomfort if only because he is not able to analyze an experience using language. "That poor guy does not know whether he can trust an experience or if he needs to fear it." You have heard of the very basic "Fight or Flight" instinct.

With the careful, loving use of drugs, I am content in knowing that Gregory does not have to worry about analyzing an experience for fear or trust. Also, he is better able to communicate, using the basic, primitive abilities he has left, to let me (us) know when he is happy, content, sad, or frustrated. And because his responsive behaviors are more under control, we can adjust ourselves to them and make his day to day life as good as possible for him.

The More Than Ever Trust and Education Foundation

When Gregory was first diagnosed with Alzheimer's in 2004, he and I went to a lawyer who specializes in helping seniors with life planning and to set up trusts to insure that the rest of their lives could be well lived financially and medically.

Gregory divested all of his savings, investments, titles etc by giving them to me and I in turn gave them to the trust for which he acts as trustee. This maneuver helped Gregory qualify for Medicaid some ten years later.

Making these "end of life" decisions was not easy, but every time we left our lawyer's office we felt a sense of empowerment over being able to control some of our future. 

For example, for a while we struggled with deciding between burial and cremation but the decision became much easier when we realized that the issue was not burial vs cremation, but rather that we wanted to live, not to die. And since we cannot control that, the decision came easily. Cremation it is.

We had to name the trust and decided to choose a sound bite that we had been using since we received the diagnosis of Alzheimer's: I love you more than ever and our love will continue to grow as it has since the day we met!

So it became: The More Than Ever Trust FBO (for the benefit of)) Michael A. Horvich 1997. I will also act as the current trustee with provisions are made in the trust to take care of Gregory L. Maire in the event that I pre-decease him. 

The other day, I visited our lawyer again to make sure our "papers" were all in order and to set up La Casa Norte as recipient of some of our estate when we die to provide education / job training for candidates select by Casa Norte who through their community programs have proven themselves capable and serious about improving their life though education.

This is a video of my telling Gregory about the Educational Foundation. I think he understood and his engagement and amazement at the possibility of doing this is apparent.

We have been working with Casa Norte for many years via cash donations, attending events, donating Michael's photography and jewelry to auctions, giving many of Gregory's computers, desks, chairs, and lamps to their newly opened half-way house when he closed his business, sending outlived clothing to their Care Closet in which young men can choose clothing for job interviews (can you imagine how excited they would be when finding one of Gregory's expensive Armini suits or shirts and expensive shoes on the closet racks?) and giving food to their community pantry.

Casa Norte's mission is to serve youth and families confronting homelessness providing access to stable housing and deliver comprehensive services that act as a catalyst to transform lives and communities. So Casa Norte seemed to Gregory and I, the most logical place to lend our support and a "passing it forward" for been so fortunate to have lived the life and love Gregory and I shared.

This is a second video the shows Gregory's continued excitement about this decision which we had talked about many times in the past when he was more able to do so and his joy at our being able to do this.

Here are a few of the wonderful things Casa Norte is doing:

Housing

La Casa Norte follows a housing first model and offers a continuum of housing resources and opportunities to youth and families who are at-risk or experiencing homelessness throughout 43 different zip codes in Chicago.
Our programs include permanent, transitional, and emergency housing options that aim to support our clients as they work towards long-term stability and self-sufficiency.
We collaborate with a large network of property owners to increase housing stability and opportunities throughout the community.

Support Services

At La Casa Norte, we believe that both, housing and supportive services are critical to ending homelessness. Our programs include life-skills and technology training, education support, employment-readiness, case management, therapy, food, clothing, and transportation assistance.
Our efforts to collaborate with an extensive network of human service organizations allow us to offer additional resources to our clients. Through the support of our partners, we are also able to offer clients access to mental health and substance abuse treatment, medical care, day care, legal advocacy and other needed assistance to support their increased housing and economic stability.

Extreme Trust

Over the last few weeks I have been posting about End of Life topics.

1) I dealt with not sending Gregory to ER when his fever would not break even though the doctor though I should.

2) I thought about under what conditions I would use ER.

3) I revisited Gregory and my previous conversations about "no heroics, do not resuscitate, no inadvertent prolonging of life."

4) I made the decision to apply for Hospice (which while dealing with end of life does not mean that death is just around the corner.)

I am aware that all of these dealings are easy for me on an INTELLECTUAL level, but then the EMOTIONAL level creeps in and I cry, and sob, and want to get hysterical and scream and rend and smash.

While I enjoy being with Gregory and am able to love him as he is today, in his world, I also know that I do not want him to "stick around" for my benefit and I know that his condition will continue to get worse.

The separation will not be easy but I know that I will get through it. I also know that while I can decide, via Power of Attorney over Health, what measure will be taken; I cannot decide when his life will begin to end. That is his job and the universe which watches over him.

So getting to the point of this post. It is not easy making these decisions on Gregory's behalf. The first thought that came to mind was what "Extreme Trust" he has placed in me to make these decisions.

Then a second through quickly replaced the first, which helps explain why these have been emotional times for me.

The EXTREME TRUST is that which I place in myself to be able to make these decisions on Gregory's behalf!

OT/PT Video

What is lovely about this video is the communication between Gregory and Pam, the Occupational Therapist. When he began therapy this round, he would not let her do much. Now he trusts her completely.

OT/PT

I always forget the difference between OT and PT so I looked it up.

OT=Occupational Therapy=a form of therapy for those recuperating from physical or mental illness that encourages rehabilitation through the performance of activities required in daily life. 

PT=Physical Therapy=the treatment of disease, injury, or deformity by physical methods such as massage, heat treatment, and exercise rather than by drugs or surgery. 

So generally speaking, OT has to do with getting back life skills and PT has to do with helping injury or discomfort.

I have noticed that whenever Gregory is "off" as in not feeling well, having a cold or flu, having his meds out of balance, having emotional highs or lows ... his neck is the first to go. It lists to the right with chin to chest and looks very uncomfortable and painful.

When you try to help him move his head back to "normal" he winces and/or "ouches." So both Manny and I give Gregory lots of back rubs and use pillows to help support his head when watching TV or eating or whatever.

I made this a priority because I know that good posture has always been important to Gregory and having back/neck problems myself, I know how painful having your body out of alignment can be.

Medicare has strict guidelines for when they will pay for OT/PT and only for a certain amount of time and if the patient shows continued improvement. Gregory has had several sessions since last January which eventually expired for one reason or another.

Periodically I approach the head nurse and ask her to ask for a re-evaluation by the OT/PT staff to see if therapy would be right again for Gregory and if he again meets Medicare requirements. 

A few weeks ago, he once again qualified and after three sessions a week, his neck has been looking much better. 

Following are a few videos that Manny took with his iPhone (a gift from Gregory and me) of today's treatment. You can see how comfortable and relaxed Gregory gets during these treatments. 

His therapist, Pam, is quite wonderful and Gregory has come to trust her with electro stimulation, massage, and using special support tapes on his neck.

Pam asks, "Does it feel good?"

Gregory replies, "Yes. I love it!"

Gregory is resting after electro-stir, massage, and heat pack.

Manny is singing gently in the background.

In addition ...

In a previous post I discussed an interesting phenomenon in which Gregory is more comfortable at times to go to Ken, his companion, for help than he is to come to me.

In that post I had wanted to, but forgot to mention that it seems very much like when a child goes to one parent with a question, doesn't like the answer, and so goes to the other parent to see if they can get a different answer. That is probably the reason that eventually when the child asks the mother a question, she replies, "Go to your father," and when the child asks the father a question, he replies, "Go to your mother."

Another interesting thing happened when we were discussing my taking Gregory to the swimming pool after Ken leaves us. I have slowly been "dropping pins" about Ken's leaving for Vanderbilt to continue his studies in psychology so that when he finally has left, Gregory will have had a chance to deal with the leaving.

When I dropped the "pin" the other day, Gregory looked concerned, worried, frightened? I asked what was the matter. "You'll take me swimming?" he replied. "Oh."

"Yes. I'll help you begin and then while you swim I'll do the hot tub or something." Gregory's worried face continued. "Do you want me to be there while you swim?"

Both Gregory and Ken agreed that Greg swims alone once in the pool and doesn't need assistance. Finally, Gregory said (or stumbled,) "Well ... then ... you'll have to come and be there. And Ken will help." In other words, Gregory wanted Ken to show me what to do to help Gregory when he goes swimming. Ironic since I "trained" Ken on what to do for Gregory. I gently reminded him of this, said that we all three could go down a few times, and perhaps that would make the transition easier.

Gregory liked this. He did comment, "You did?" in response to my comment about having shown Ken the swimming procedures. Ken was very supportive and added, "Yep, Michael showed me and I'll show him back. I am sure there won't be any problem.


CLICK HERE to see previous post. Opens in a new window.

An Interesting Phenomenon

I have been noticing an interesting phenomenon with Ken's living with us. When Gregory needs help with some things, he goes to Ken for that help. I do not mind but have been observing and have learned a few lessons based on my observations.

Ken is always, and I mean always patient with Gregory. I am not.

Ken is always fast on the ready to help or do something for Gregory while often I will make him figure things out by himself.

Ken will be supportive and positive while at times I become angry, frustrated, concerned, worried for the future based on an imagined, new, or periodic failure on Gregory's part.

I do not want to seem judgmental towards Ken or myself, just observant of the differences. The lesson here, however, is that Gregory TRUSTS Ken to deal with some things that he doesn't TRUST me to deal with.

For example, after hundreds of times helping or instructing Gregory on how to put on his "Medic-Alert" necklace, now I just tell him, "Just do what you can, it doesn't matter." Ken still spends the time trying to verbally tell Gregory how to put on the necklace. Other times I just take it out of Gregory's hand and put it on for him. I have never seen Ken do this.

My very "in touch niece" Colleen once drew an understanding about cats and how they will continually come back to you based on the MARGIN OF TRUST you allow them. You can discipline them or step on their tail accidentally, but they will still come to you to get pet and will purr and love you.

For example, you can hold them firmly, but when they really, really want to get down and when they show you this with their squirming, you put them down. The trust continues. You may swat the cat when it is chewing on a book in your library, but they still trust you. If you swat them all the time, however, or continue to hold them against their will, the trust margin decreases.

So my lesson with observing Ken and Gregory's interactions is that I need to be very careful not to extinguish that margin of trust which Gregory has for me, my intentions, my being here to help. The last thing I would want to do is inadvertently cause him to be afraid to come to me for help.