Thou Art Dust

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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

Before and After

In my life before ALS I tried to lose weight and get in shape many times over. I succeeded once or twice. I had a closet full of clothes in several sizes. I would never wear sleeveless blouses or dresses because I felt that my arms were not in shape. Eventually I always fell back to bad habits. I always wanted to partner with someone so we could inspire each other to stick to our goals. That didn’t work either. You have to travel that decision-making road on your own.

I finally made the decision to focus on myself when I registered at North Carolina Central University (NCCU) to finish college and earn a bachelor’s degree. It had been a 17-year stretch to earn my associate’s degree between deciding on a course of study, having a baby, and a former spouse who proclaimed that my GPA was only good because I took easy classes. He would tell me that I would only get a degree in basket weaving. This was meant as an insult because I am sure he has no idea how difficult it must be to weave a strong, sturdy, and practical basket.

I enjoyed the work of being a legal secretary, but I knew I was never going to move from a secretarial position without a degree. I have trained many people over the years, some had college degrees, but you would never know it. (I was once asked by a Harvard graduate and lawyer how to get a money order. I guess that they don’t teach life skills at Harvard.)

I knew that I was training people who would move on and over me because they put in their four years at college. It didn’t even matter what degree they earned, only that they had one. In my heart I felt that very few managers appreciated my work ethic (could such a thing exist in a lowly staff person?). Many years into my career, my job title changed from legal secretary to legal administrative assistant. This is a glorified title handed down from management. It obviously meant something to them, but nothing changed in my job description. The bigger the firm, the bigger the politics. The ratio of one-to-one is long gone. It is now at the very least one secretary/assistant to 5+ professionals, no matter the workload. It looks good on paper.

I was always watching shows about the law. I always found it interesting, and I had a cynical belief that the best lawyer always won. I hoped that I could make a difference and help bring justice into the criminal justice system. But I had spent almost my entire career working in intellectual property and changing to a different area of the law would most likely downgrade my career and salary just like it does when the job location moves from city to suburb.

So in 2012, shortly after moving to North Carolina, I searched for a college that offered a degree program that would be interesting and engaging. I found NCCU with a criminal justice program that had a concentration in homeland security. I took most classes online because I worked full-time. When I did show up to take the occasional class on campus, it was usually assumed that I was a parent or professor. It took me 4 years to finish. Right at the end of my studies, with 3 classes left, I received my diagnosis. I immediately signed up as a student with a disability. ALS was not going to stop me now! It was hard and things took me longer, but she persisted. 

Up until the time of my diagnosis, I was able to complete medical questionnaires by checking NO to all those boxes pertaining to medical history and medications. I didn’t have any condition requiring medication. I was, however, grossly overweight. The plan was to focus on the weight once I graduated. Then I would look for a job in a local or federal government Department of Homeland Security in Florida. ALS changed all that.

Now in my after life I am a pharmacist’s dream. I have so many medications that I gave up trying to keep track. Riluzole I mentioned previously. I now need to take Eliquis daily due to the blood clots that formed in my leg and chest from not being able to move. I need stool softeners and laxatives for the same reason. I finally agreed to a prescription for pain in my joints. The first one I tried appeared to be giving me a rash so we had to switch it out. I can take acetaminophen for minor things like a headache. I definitely need my nuedexta and Valium to control my pseudo-bulbar affect (PBA). I never was a weepy or emotional person before, and I was not easily excitable. Now I have PBA and tears come easily. There are a bunch of lotions and powder that I use. I have sensitive skin so that only adds to the chaos. It seems like every week I get some new medication. I let my husband manage it all.

Life now is coming to an end. I hope that I am ready. I went on hospice to make things easier. So far, hospice has made things more frustrating because they can’t seem to get their act together. I am not a fan of waiting until afternoon to shower and dress, unless it is my choice and I was able to do it myself. Before ALS I could pretty much do as I pleased.

Now everything is on someone else’s schedule.  Even food and medications have to be planned out. My life before ALS was definitely better, but did I ever think about it? I never gave it much thought. I had work and a family to think about.  I suggest you make your before life the best it can be, because if you think life is frustrating, don’t even think about dying!

My ALS Caregiver

Picture 8What can I say about the person who gives up their career and life to take care of me at the end of mine? Plenty! Is it all sunshine and roses? Of course not. Part of it is due to our own personalities and part of it is because of the difficulties associated with ALS. We don’t give up, but we occasionally want to strangle each other. So not much has changed in our relationship.

I know that every day this disease tugs at his heart and he has his own breakdown. I usually have my own non-PBA breakdowns at night lying in bed where I oftentimes work on this blog. This is our quiet time. I am supposed to go to sleep while hubby and caregiver retreats to the mancave for a cigar and to chill.

Our lives have taken a role reversal of sorts. I no longer have any chores. Meanwhile hubby has taken over as the laundress, a nickname he gave me because he would complain that I spent all my free time doing laundry. He no longer enjoys cooking, one of his passions, because he says it’s not fun to cook for one. And believe me, for an Italian that is an impossibility anyway. It used to be my job to clean up after dinner because I lost all cooking privileges the day I said, “I do.”

I believe that most of our disagreements or difficulties these days are due to my inability to speak. I still try to speak in this non-voice of mine which, I admit, is stupid on my part. It’s not easy to give up on one of those five senses you have had forever. And it’s really stupid for me to try to speak to my hubby now considering that he has had hearing loss since he was 14. My husband has told me that he would like to hear my natural voice. I spent almost two months on voice banking in order to have a synthesized voice that would sound like mine. Hubby cannot understand my voice on the Tobii (my speech device). With some tweaking it does, but clips off at the ends of some words. It sounded better on my MacBook which I had to give up. So I use a built-in voice that he can understand but complains is condescending. Argh! What am I supposed to do?

I am now on hospice and my husband is on an unpaid leave of absence from work. It’s almost as if we retired, except it’s a lot less fun for the both of us. We recently lost an aide so it means there is a lot more for him to do. We are working with hospice to get a regular routine going. I don’t want to be in bed all day waiting for a shower or bed bath. I haven’t become bedridden yet. I will die when my time comes. Until then, I’d prefer to enjoy the time I have left. But I digress.

My caregiver’s day begins earlier than mine. He gets up earlier to shower and eat breakfast. He tries to get a few moments for himself before I rock his world. The loss of one of our regular aides means everything is his responsibility that day. Our current nursing agency is having a difficult time finding a replacement. Every one wants or requires training for a job my husband was never trained to do. He laughs and tells everyone that I call him my untrained professional. .

After my feeding tube was put in, the surgeon gave my husband almost two whole minutes of training on how to use it. The aides cannot feed me because they are not trained. I use a trilogy machine when I sleep. I wear a mask that covers my nose and mouth. I do not have the ability to remove the mask. The aides are not permitted to do it. So my untrained professional does it before they arrive. I also have a cough assist and a suction machine that could save my life if I was choking. Again, the aides cannot use them. I need my untrained professional for that. Don’t get me wrong, I can get aides qualified to do these things, it just costs more. It is almost as if the government, state, local, or maybe even federal, prefers an able-bodied person to give up their career, income, and benefits to become an ALS caregiver. It’s either that or spend your life’s savings on a disease no one can treat let alone cure. And pray that you saved enough or have great medical insurance.

Sometime before or after hubby’s shower and breakfast, I get my breakfast in bed. Then I wait in bed and fall back asleep until it is time for my meds. We wait at least 15 minutes before attempting to get ready for the day. My husband uses a Hoyer lift to get me up and onto my shower chair. It sometimes takes a few attempts to be properly situated in the chair. I have my teeth brushed in the shower. It’s less messy that way. It kills me that I cannot brush my own teeth. The shower can be routine or full of tears; mine, in case you didn’t figure that out.


Drying off is always an adventure. I feel every piece of hair that falls on my skin and want it off. Hubby can’t always see them and that’s another annoyance for me because I know I will feel them all day long. Hubby likes to say, “But it’s your hair so what difference does it make?”. The difference is that it feels like bugs crawling on me. Another gift from ALS.

We use the Hoyer from the shower chair to bed where, if I am lucky, some range of motion exercises will be performed. Otherwise it’s powder, lotions, eyedrops, etc. Then it’s time to get dressed. What works best for both of us these days are skirts. I buy skirts with elastic waistbands and they are easy to put on and take off over my head. About two to two and a half hours later we are both ready for our day and hopefully are not at each other’s throats. Sometimes we are exhausted by this time. Many days are spent at home just hanging around.

Recently I told my husband that instead of taking a mini vacation, I would rather have an aide to help both of us. I have tried forever to get a family vacation planned. There has always been a reneger or a reason why it couldn’t happen. Now ALS has assured it can never happen. It’s okay family, (the family who accepts me just the way I am because your son loves me), I love you anyway.

We are searching for an aide because it will bring back more of my husband and hopefully lessen his caregiver duties. We will continue to make memories here close to home. Love your ALS caregiver. Their lives are a mixture of sorrow and love, their love for you.

i love you, Joseph.