The Longest Day

lopdayI titled one of my previous blogs “Clinic Day and Advocacy” and then only wrote a short paragraph on the clinic. That was not very nice of me, don’t you think? Some of you may never have the need to visit an ALS Clinic, and that would be a good thing, in my opinion.

You probably have read some of my blogs where I have talked about what goes on there. This time I would like to take you through my visit as best as I can. As you may know I had been diagnosed with ALS on April 29, 2016, by a neurologist at Duke’s neurology clinic. It just so happened that the doctor had previously been a resident working with my current doctor whose area of expertise is ALS. It may sound funny, but I believe I thanked him for the diagnosis. You see, there is no test for ALS. I had been running around to all sorts of doctors, physical therapists, and I had even gone back to my acupuncturist for relief.

So to finally have a diagnosis meant the running around was over. I was then referred to the multidisciplinary ALS Clinic at Duke. I did not yet understand the full impact of such a diagnosis. I googled it on the ride home. When I suddenly stopped reading out loud, my husband pulled over and made me tell him what it was that made me stop. It was that one tiny detail – – life expectancy.

I have been a patient at the Duke ALS Clinic since July 5, 2016. At that April visit the doctor forewarned me that it could take up to seven months to get an appointment in the ALS Clinic. I only got in to the clinic so early by calling every other day and getting on the waiting list. My original appointment was September 20! Since then, I have participated in many different types of research, not all involved drugs. The longest drug study that I participated in was a year-long. It was a year full of clinic visits to see the research nurse.

 

 

 

I thought that the drug worked. I even went to open label on the drug which meant I would get it free for life at the end of the study. Then about two months into open label, the drug was pulled. We were told that the study failed. Later I found out that the study failed because too many patients had dropped out of the study which would skew the data and make it meaningless. In order to find a cure or even a treatment, we need more patients to take part in research.

So getting back to the subject, July 31st was my most recent clinic visit. First up was the usual intake where a nurse checks on any changes since my last visit. They always want to know if I have fallen in the last three months and check on all the medications I am currently taking. Used to be they would also weigh me at this time, but since I cannot stand and the roll-on scale does not work for me, it has to be done differently.

 

 

 

 

Prior to the actual visit, I met with a research assistant regarding the latest research I am taking part in. It is a genetic study. In this new research, I donate blood and answer questions about my family‘s medical history and jobs I have held, where I have lived, and things like that. They also test my cognitive abilities by asking questions to test my memory. I am given groups of numbers up to five digits long and I must repeat them backwards. I had been tested previously to see which form of the disease I had, familial or sporadic. Familial would have meant that I have an inherited form of ALS from which 10 to 20 percent of patients suffer. I have sporadic ALS so it appears that I am taking one for the team.

 

 

 

 

Since I am now on hospice at home, there are not as many specialists that I need to see at the clinic anymore, but they stop by any way just to be sure. Being on hospice means that the doctor feels that I am in the end stage of the disease and have only six months left to live.

The first person I saw was the respiratory therapist. This time I took the breathing test with a mask. I don’t know if that made a difference in the results, but my forced vital capacity (FVC) fell another 8 points. This is not a good thing. It is difficult for me to expel carbon dioxide. This is an important fact for first responders. It is necessary for them to know that giving an ALS patient full oxygen could kill them.

 

 

 

The physical therapist dropped in but I did not have issues that needed to be addressed. I just try to do my range of motion exercises at home with my aide. I do have neuropathy that kicks in every now and then. Mostly I feel it in my hands. I get a feeling like pins and needles or numbness. I can usually get rid of the feeling by asking someone to massage or rub my hands. I also take medication for the neuropathy pain.

A new development at this visit was that I was seen by a medical student. He checked all my symptoms just like my doctor does. ALS patients are rated on a scale, the ALSFRS. FRS is short for functional rating scale. I rated pretty low at 7. This test measures my muscle strength. Some of the questions ask about my ability to climb stairs, grip a pen and sign my name, ability to dress myself, etc. You get the point. I fail in almost all categories. Then, of course, my doctor comes in to conduct his examination and to answer any questions I or my family might have.

 

 

 

There was a visit from the occupational therapist. In the past she has been very helpful coming up with solutions to problems I have had making things work for me at home. She was also the first person to demonstrate the Hoyer lift to my husband and me. There is not much she can help me with any more because of my limited abilities. But I was very happy to show her the adaptable jumper my friend made for me. She was interested enough to ask for the pattern number and construction information. I was happy to be able to pass along the information if it might help someone else.

The speech therapist, however, has become a VIP in my clinic visits. Even though I have a speech device, the Tobii Dynavox, which I have nicknamed Toby, there is a lot to learn about it. The speech therapist works closely with the IT technician when a PALS has a device. An evaluation by the therapist is necessary if medicare is paying for the speech device. This time around the IT specialist was not available, but I did have questions about other ways to communicate when I don’t have access to Toby. I have made some phrase boards with help from the speech therapist and asked her to demonstrate how to use them. She also came in with an oversized alphabet chart that is a huge help. There are many things you can learn about and get help with if you are lucky enough to go to a multidisciplinary clinic. This is just one example. The huge advantage of the clinic is that you get to see all the specialists in one day at one location and you don’t have to change rooms, they come to you.

 

 

 

I also had blood drawn, blood pressure and oxygen levels checked, and my weight was taken by Hoyer lift. As I mentioned previously, the roll on scale does not work for me. According to the measurements taken that day, I lost 17 pounds. I thought I lost weight because my legs looked thinner, but I never thought it would be that much. I still say that I have enough fat to survive on a deserted island for a long time, but that was before ALS entered my life.

 

 

 

Other people I have seen at clinic in the past are the wheelchair technician and a representative from the ALS Association. This time out I missed the wheelchair tech, but I already had a visit scheduled at his shop for some needed adjustments. The nutritionist was not in the clinic and my weight was taken after the doctor examined me so I don’t know what the verdict will be on my weight loss until I have my telemedicine visit later in the month. The ALS Association sends representatives to clinics to see if they can offer any services to patients or caregivers.  The Association supports the ALS Clinic and has knowledge of other resources to help families affected by the disease.

Even though I did not see all the specialists, we managed to be the last ones in the clinic, as usual.  The social worker is the last person you see in the clinic. Stacey is the social worker in the clinic and she can work miracles. Nothing slips past her watchful eye. She is known as the quarterback of the clinic. She is the first person to talk to if you are having any problems connected to your condition, insurance forms, or any other needs. She can run interference for you.

This was the first clinic visit my son attended. I have told him before how much time we spend at a regular clinic visit, but I know that he was very happy to be out of there after five hours. This is how you spend your time when you have a progressive, untreatable, and fatal disease.

Some photos courtesy of and copyright by Matthew R. Reis 2018

Expanded Access, What Is It?

riluzole-discount-pharmacy-couponRiluzole has been around since 1995 as the only drug to treat ALS. Riluzole is not a cure for ALS. Its purpose, as I understand it, is to prolong the median stage of the disease for a person living with ALS (PALS) by about three months. Some PALS decide not to take the Riluzole for a lot of different reasons. Cost of the drug is one of those reasons. Drugs for rare or orphan diseases typically cost a fortune and can bankrupt a family.

I chose to take Riluzole immediately upon being diagnosed. I don’t remember what my own motivation was at that point, but my husband wanted those extra three months. I had private insurance at the time and the copay was $385 for a month’s supply. I found a coupon online at GoodRX that lowered the cost to $185 per month as long as I did not use my private insurance. Another pharmacy we tried wanted $999 for the same medicine. I can never understand how that works. It seems to me that drugs, like politics, is just another game. Maybe I am just naive.

Not too long ago I took part in a Patient Advisory Panel for ALS patients and caregivers. The panel was designed to get input on a new sublingual form of Riluzole. Biohaven Pharmaceuticals made the drug and was writing a protocol for FDA approval. Imagine that! A pharmaceutical company who wanted to hear from the end user, the ALS patient.

This discussion was being facilitated by Easy Access Care. Their brochure explains how the FDA works with pharmaceutical companies under the Expanded Access Program as follows:

Under its expanded access programs, the US Food and Drug Administration (FDA) works with companies to allow access to investigational drugs outside of a clinical trial to patients with serious or life threatening illness for whom there are no comparable satisfactory alternate therapies (EAC).

According to Biohaven Pharmaceuticals and Early Access Care, (Biohaven, February 17, 2018) expanded access is intended to be a form of treatment for “a patient with a serious disease disease or condition“ (Biohaven, February 17, 2018). EAC’s expertise allows the drug companies to focus on research and development of new treatments and drugs while they take care of the paperwork and red tape. You know there has to be red tape if it involves getting governmental approval.

Biohaven’s sublingual riluzole offers advantages over the usual tablet form. The obvious advantage is that it can be put under the tongue. For patients who have difficulty swallowing this is a huge plus. It does not require any liquid to be taken with it and it dissolves quickly. Fasting is not required in the sublingual form as it is with the tablet form (Biohaven, February 17, 2018).

In order for me to try the new sublingual medicine, my doctor had to complete forms, obtain approval from Duke Health Systems, and apply for the medication from Biohaven. My doctor handled a lot of the paperwork himself because there was no budget that would cover the program cost. This is what your doctor will do for you if he is a true ALS Advocate. I was the first, and to date, the only patient at Duke to make the request for the drug. I was interested in taking sublingual riluzole because under the expanded access program it would be free to me. I am on hospice now and they will not provide a drug that will prolong my life. So even though all of my other medications and supplies are provided free, riluzole is not. If I choose to take it, I pay out of pocket.

I was on the sublingual form of riluzole for about a month before I had to stop. I knew during the panel discussion that I was never a fan of mint, but that was the flavor chosen for the sublingual. I took the initial dose and did not expect such a strong flavor of peppermint. I pretty much hate peppermint. The first dose gave me a coughing and choking fit that lasted for 15-20 minutes. I also had the stinging and numbing that I recognized from my past experience taking the tablet form by mouth. I don’t know if I would have been able to take the sublingual if it came in another flavor. I had even resorted to adding the new form into a slurry of my other meds that are put into my feeding tube. That helped me to avoid the coughing and choking. I realized, however, that a sublingual and transdermal medication shouldn’t be taken this way. It would not be effective.

Those PALS who are peppermint lovers and currently taking riluzole, but have swallowing or economic problems may be interested in trying this sublingual version. If you are a patient at the Duke ALS Clinic will be a little bit ahead in the application process. I hope it works well for you if you decide to try it.

References

Biohaven Pharmaceuticals and Early Access Care, February 17, 2018, “Patient advisory panel: ALS patients and care providers”

Early Access Care (EAC), (n. D.), BHV-0223 “Expanded access protocol: For people with amyotrophic lateral sclerosis”

Hospice At Home

HomeHealthCareI 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.

Telemedicine

telemedicineIf you are reading this, you may know that I have amyotrophic lateral sclerosis (ALS) also referred to as Lou Gehrig’s Disease. I had my first telemedicine visit with my doctor last month. Telemedicine allows patients to stay at home and still visit their doctor. I had my visit using my iPad. The connection and setup are facilitated before the visit by technicians working with the Duke ALS Clinic. It’s not possible, of course, to see the multitude of other specialists that I would usually see during a visit to the clinic, but it does help to have an awesome doctor like mine.

My doctor is Richard Bedlack, and he comes to the clinic after his morning at the Duke VA Hospital where he is Chief of Neurology. Duke offers telemedicine for patients who have difficulty getting to the office for a visit. While it is not far for me to travel, I am now on hospice so this is another way to check up on me. The telemedicine offered at the Duke ALS clinic is supported by the NC Chapter of the ALS Association. You can learn more about Duke telemedicine by clicking on this link

When I visit the clinic, I am never rushed so that the doctor or any of the other specialists can get to the next patient. Every one takes the time to listen to all my questions and concerns and they take the time to get me an answer. Duke has assembled a great team of specialists to work with the ALS patients. My one concern, however, is that they do not have an ALS team available in the main hospital. As I described in a previous blog post (Blog Interrupted, March 23, 2018), it was a horrible experience in the emergency room that prompted me to write to the President of Duke University Hospital. The real problem seems to be that ALS is not a money maker for the hospital, just like many other rare or orphan diseases are not. The patients diagnosed with ALS are greatly outnumbered by diseases with treatments that are billable and can bring in a lot of cash. Telemedicine does not even have a billing code. My regular in-patient visits to the multidisciplinary clinic take place on Tuesdays. This is typically the only day Duke will allow the clinic to operate. Like I said before, it is a money issue.

I recently found out that the NC ALS Chapter did not reach its goal this year. The clinic and telemedicine services are very important resources for people living with ALS (PALS). Other PALS have organized fundraising events to help support the Chapter in its mission to help PALS and their caregivers (CALS). I am not able to do that. Instead, I am asking those of you who may have missed making a donation to my Team to do so now. If every registered participant raises $60 the goal could be met.

PALS need your help now. The cure for familial ALS is close. This will not help me, but there are so many other things that are supported by the NC ALS Association that helps PALS each and every day.

My Team page will be available until July 31. I did not join the Walk in Northern NJ this year.  We raised a lot of money there last year.  If my Team Kathryn North donates, we can help make this a reality.

Let’s do this! Click here to donate to Team Kathryn.

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.