The End of the Journey

If you are reading this blog post, it means that I have passed. I wrote it before I passed and a friend posted it for me. It was read during my memorial service.

Well, I thought that I was being smart and had my jokes all ready for this occasion. I planned to open with the following: This is a first for me, giving a “sermonesque-type” of speech, at least in a church. Well, it turns out that this is not a first. I did it once before, when I asked our Vicar, Lisa, if I could introduce myself to the new people in the congregation. And next thing I knew, there I was smack in the middle of the sermon.

I think many of you will agree that I have had strong opinions on things my entire life. Well, it’s over. This is definitely my last sermon.

Some may say that ALS has finally won. I disagree. I think I gave it a good fight, just like everything else in my life. ALS, or the Beast, as my husband always referred to it, certainly took a toll on our emotions and threw our lifestyle and future dreams for a loop. I naively thought I could handle most of what it threw my way.

I was interviewed before the ALS Walk in 2017 and I said that the loss of independence was the worst part of this disease, but I was wrong. As I write these words, I have already lost the use of my legs, arms, hands, fingers, and the ability to eat food by mouth and speak. I was willing to accept these changes.

As my ALS progressed, I realized that my fear of losing independence only meant that I was unwilling to compromise and accept help from others. I ultimately realized that there were really two things that destroyed me. The first was losing my ability to communicate with the world. Try it for a day and you will begin to understand the frustrations that many other voice-less people experience, whether it is due to illness, politics, or language. Oh, and you cannot use arms and legs to point either, because I can’t do it. I can still shake my head and move my shoulders a bit at this point.

During my journey with ALS, I met many Clarences, if you have ever watched the movie It’s a Wonderful Life. (Later on today you will have to look it up, along with all the Roman Catholics who are trying to figure out what a Vicar is.)  

The second thing that ALS destroyed in me was having to watch loved ones grieve for you while you are sitting there in front of them. I could not even offer a hug. I could not help them with their own feelings; I could only sit there and watch.

I lost my 21-year-old sister when I was 14 years old.  My father died 10 years later. The first death we all knew was coming, but it was not something I could talk about with my 21-year-old sister. What can a 14-year-old say to give comfort? My parents didn’t even want to let my sister know her own diagnosis. I am more realistic and want to know the truth. My father died suddenly in a construction accident. I was the first to arrive at the hospital because I was working in Manhattan and the accident took place in the subway tunnel being built under the East River. They say he couldn’t wait one more day.  He had to be in Heaven because the next day was Saint Patrick’s Day. My dad was proud of his heritage and loved children.

My biggest fear is dying on a relative’s birthday. If I could ask God for one favor, it would be not ruining someone’s birthday or holiday. I know that this is difficult for some of you to have to listen to, it was just as difficult for me to write. I do hope that this “sermon” will reach my siblings in particular, and have the intent I want it to have, even if it will embarrass some of you into action. It is not something I planned to add to this narration, but perhaps this setting will be a reminder of the Christian lessons we learned so long ago. I remember sitting in the church of my childhood and reading the words printed on the walls surrounding the altar. As I remember them, they read:

“They will know you are my disciples if you have love for one another.”

And to the right:

“Love thy neighbor as thyself.”

Grieving can last a lifetime – so can love. Love is a four-letter word that, in my opinion, too many people are afraid to say to each other, but I have heard it a lot lately.

I had two sisters and three brothers. We had many get-togethers, and then something happened. I believe it was dad’s death that transformed our family. I would like to suggest that we bring that four-letter word LOVE back into action. It works on my husband’s side of the family and it would be a nice thing to copy. I have tried endlessly to solve the rift between my siblings. Unfortunately, as I write this in October 2018, I have not succeeded. ALS did not cause this rift, but it might as well have, because it has the same symptoms. Incurable, untreatable, progressive and fatal. I am sorry for any pain I caused, and I hope you are, too. I think I told you that I was sorry, either in person or in writing. If I missed you somehow, please accept my apology now.

In a spirit of forgiveness and renewal, would you all please turn to a person next to you who is not related to you, and tell them that you love them.  And please join together in one of my favorite prayers:

Lord, make me an instrument of thy peace;

where there is hatred; let me sow love;

where there is injury, pardon;

where there is discord, union;

where there is doubt, faith;

where there is despair, hope;

where there is darkness, light;

and where there is sadness, joy.

– Prayer of Saint Francis 

 

Please support ALS Research.

 

The Minutaie

There are a million little things you can do for yourself every second of every day. You don’t need to ask; you simply get up and do it. But what if there were times you couldn’t get up or if you were disabled and dependent on someone else? How long is it okay to wait? I mean, think of a baby. They are as helpless as I am, and most people come to their aid quickly. But when you are an adult with a paralyzing disease like ALS, it feels to me as if I can wait for any amount of time. After all, they know that my disease is incurable and fatal. So why spend time and money on something that progresses onward to my death? It’s pennies on the dollar in healthcare.

There are times when my caregiver is right in front of me and I cannot even make a sound to let them know that I am in pain or if they themselves are hurting me. So a reasonable adult waits in pain. Babies can cry for some of the same reasons I do. It might be my only form of communication at the time.

I do have a question I would like to ask though. If we protect babies at all costs, what about adults? I have good respiratory numbers to keep me alive. So the next move is to slowly decrease my food and to give me intravenous liquids. Does it sound like I am being replaced by an infant? I mean, we are all going to die. I just didn’t realize that I would be dying by an involuntary food strike or I could have joined the IRA years ago (OK, that is the author’s interpretation of what I heard from a hospice representative.)

At what point do we decide a person’s value and who makes the decision? What makes a person worth saving? Is it the number of years they live? Is it because they do not have a rare disease and more money can be earned on their illness (WWJD)?

On April 1, 2018, I wrote a letter to the President of Duke Hospital. I didn’t ask for, nor did I receive a reply, not even a form letter. But all the surveys I get from Duke have had his name on them. Do you really think he cares about an individual response, or just tallies up the responses his survey company gets? I bet I know the answer. After all isn’t Duke a for-profit hospital?

Got onto my soapbox again and off topic – the minutiae. So who scratches your itches? Who drives your power wheelchair when you can no longer move your hands?

Who opens the door when there is no handicap button, or you can’t push it? Who moves the trash can so conveniently placed in front of that button?

Do you care? Do you notice? The Americans with Disabilities Act has been a law for more than 25 years. Do you know any part of the law? I bet you know about driving with a cell phone, though.

Minutaie…

 

(This blog  was  written  with eye-tracking)

Hospice At Home

I thought about writing this blog post because I was asked what the difference was between a typical hospice where you are an inpatient and home hospice. Having had no experience with the typical inpatient setting there is not much I can say about it. I did, however, visit two traditional hospices in my area not too long ago to check them out in order to give my husband a brief respite. This is what I discovered.

The first hospice was the Hock Family Pavilion run by Duke University Health Systems. It was not easy from the outside to recognize it as a hospice. The outside looked like an older style home setting in Durham. I liked that it was set back quite a bit from the main road. When my husband and I visited, we did so without an appointment. We were greeted by a volunteer who was sitting at the front desk. She took us to see a typical patient’s room which was vacant. I immediately fell in love with the soothing yellow color scheme. The sun was shining through the window which gave me a welcoming and homey feeling. The room was large and had a sofa for visitors. The bathroom/shower area looked like it would be a tight fit for bathing with an aide. The room we were shown happened to be located adjacent the nurses’ station. A nurse was summoned and she readily answered all of our questions.

The downside to the Hock Family Pavilion is that you cannot schedule your stay. The facility only has 12 rooms available for patients. There is a waiting list for the five-day respite period. You literally are called the day before a room becomes available. I found a video on YouTube that I feel gives a good depiction of the Hock Family Pavilion and you can view it by clicking here

The second hospice we visited that day was located in Raleigh, a bit further from my home. This facility was run by Transitions Lifecare. We had used Transitions when I received palliative care. Their services at that time were excellent.

When we arrived at the Transitions facility there was no one at the front desk to greet us when we arrived. After a while a volunteer coordinator showed up and she took us back to see a room. As I passed through the door separating the front entrance area from the rest of the facility, that little voice in my head was shouting nursing home.  The only difference was that unlike other nursing homes I have been in, there were no patients out in the hallways. But this was a hospice so I would presume that patients do not typically congregate in the hallways. There was a huge nursing station which appeared to be the hub for the three or four hallways jutting out from the station.

The room we were shown depressed me. It was dark without a speck of sunlight to brighten up the room. Perhaps a twist of the window shade might have made a huge difference, but the volunteer did not make a move to do so. There was no one else associated with the facility who was available to speak to us at that time and the volunteer was unable to answer many of our questions. I was not motivated to spend any time in their facility. I was not able to find a video depicting the inside of the facility that would be equivalent to the Hock video.

Hospice at home is the other side of the coin toss. Reading comments on Facebook, it appears that not everyone has the same in-home experience. But this is my blog, so, it will be my experience you read about.

While both facilities seemed competent, my husband and I decided to go with Duke Home and Hospice for reasons of our own which included the fact that they cover most of my medications, work closely with the Duke ALS Clinic, have personnel with actual experience with persons living with ALS (PALS), use the durable medical equipment company and therapist that is at the clinic, and will defer to my doctor on all decisions that deal with my ALS. There was no chance that I would be willing to give up my doctor, a man who has dedicated his entire career to me! (I like to believe that is true, but, in fact, his career in neurology has been devoted to ALS.)

Hospice at home means that I can see a second medical team devoted to me. I can also travel to the ALS Clinic for quarterly appointments as long as I am able to do so. I have a nurse manager who visits weekly and oversees the care I receive. I also have hospice aides who assist with bathing or range of motion exercises to keep my joints from freezing up. Other pluses are that there is a hospice chaplain, social worker, and volunteer whose services I can also utilize. Of course, bereavement services are available as well.

My volunteer is wonderful and I always feel better when she is here. She has a cheerful disposition and leaves me feeling better. Right now we are sorting through photos for my memorial video. If I don’t feel up to the task, we watch TV (we like the same shows!) or do something else.

The social worker helps find resources for the things I want to do while I still can. No matter if it is selling jewelry or planning a trip, she always finds an answer for me.

Now do not misunderstand me, when we initially made our decision to go with the Duke Hospice we had a tough time getting the administration to work with us. We were receiving phone calls for all kinds of services, but we had a difficult time getting a nurse manager assigned to me. My husband finally worked it out. The nurse who was ultimately assigned is very caring and professional. Don’t get me wrong, the nurses I saw previously were equally as competent, caring and professional, but the first had handed in her resignation two weeks earlier, the second had no ALS experience, and the third was an intake nurse and had not been involved with patient care for quite some time. We have not been able to figure out how to get the hospice aides here before noontime, so once a week I have a long morning in bed. It works out okay unless I have to be somewhere that day.

To sum it all up, hospice at home can work for you if you have the right caregiver at home. My husband is my caregiver, best friend and ALS advocate. We are not perfect, and my husband deals with a lot of ALS bullshit, especially because of my issue with pseudo-bulbar affect (PBA). But he’s still here. We do not like the idea that we were given an estimate of six months left for me. That six months could come right on time to coincidence with the holidays. So in the meantime, we deal with the Beast the best we can. We hope to soar past the end of 2018.

Thou Art Dust

It isn’t always easy preparing for the inevitable, but I have always tried to be prepared for things in life. We prepare for birthdays, holidays, we even pack lunches ahead of time. Some of us are last minute planners, but that always freaked me out.So with a new diagnosis of perhaps six months of life left, I am moving into high gear.

I planned my funeral mass about a month or so after being diagnosed with Lou Gehrig’s disease in April of 2016. Why leave that decision or task, if you prefer that term, to someone who is grieving? I picked readings with the help of my priest and told her what songs I preferred. My husband thought I was crazy. “Why are you in such a hurry?,” he wanted to know. Maybe it’s because I am more practical? I didn’t see any point in waiting? I know it is going to happen and sooner than I had ever imagined. We all die some time. Isn’t that what life is about? And besides, my husband has enough trouble finding his way in the prayer book already. And let’s be honest here; men don’t ask for directions, so why let a man direct my funeral?

I discovered a long time ago, when I attended a grief counseling session with my mother, that death is always hardest for those who are left behind. The dying usually realize their death is coming and find a way to accept it. My mother had lost a daughter, my sister, who was only 21 years of age, and then she lost her husband and rock, my father, in a construction accident ten years later when he was only 62. I saw the pain she went through even with her five other children around to help her through it all. I do not want to add to my husband’s grief by requiring that he sit down and prepare for a funeral during one of the worst times in his life.

I want my funeral to be a celebration of my life. I know that it is difficult for some people to talk about dying. It is even difficult for me at times, and the reason is the same. I might accept the fact that I am dying, but it’s painful to be witness to another person’s reaction to it. I know that I was shocked the first time hospice was suggested to me. All I could think of was SIX MONTHS left to live! It was worse than the day I received my diagnosis. Not a day goes by without the thought of a looming deadline. I sometimes feel as if I am still working and trying to make the midnight filing deadline for a patent application. There is always the chance that I could plateau and hang around longer, but no one can tell. ALS is not predictable like so many other diseases.

So just to forewarn you, I am going to prepare you for my inevitable end. I am going to be cremated. There will be no wake or viewing. I’m here now if you want a view. My funeral mass will be followed by the interment of my ashes on church property and a memorial service. It will be a trifecta of sorts. I want you to wear whatever you want and feel comfortable. Bring your noise makers, funny hats, or Mouse ears and be prepared to march on over to the tree near the pond. That is where I intend to have my ashes buried. Don’t be bashful or worry about what others will think. Tell them this noise, your outfit, and your happy attitude were my requests to y’all. See a tiger (that would be me) can change its stripes when it moves south.

 

 

Most importantly, feel welcome in my church because you truly are. God loves you no matter what. I may not always have practiced what I preach, but I believe in a loving and forgiving God.

So if you don’t get to visit me before I leave this earth, drop by the pond and throw in a line. You can join my husband in one of his favorite hobbies, fishing. I will be there too, waiting and watching for you under the tree. Say a prayer, share a memory, or pay it forward and do a good deed. Oh, and if you forget your fishing pole, there are some already there prepared for you.

,… for dust thou art, and unto dust shalt thou return. 
 Genesis, 3:19