The Unwelcome Guest

I spent a fair amount of time with my grandparents. They lived about two miles from my house growing up. I remember when I was quite young my grandmother seemed upset after a phone call, so I asked what was wrong, she replied "at my age, Cheryl, most of the people I've known have died." It was a look of incredible melancholy and sadness. It's a moment I've never forgotten and in recent years thought about quite a bit. The truth is Patrick and I have seen many of our ALS friends and others pass away.

In the past six months we've attended three funerals. The last one was a week ago and I was thinking afterwards how I'd like a breather from death, grief and loss. It's a bit like having an uninvited unwelcome guest that won't leave.  But this was not to be, as we were sitting on the porch yesterday, I got the phone call, Sam had passed. Sam had ALS and we participated in grief group together and honestly was one of my favorite people. He texted me poems and his thoughts on life while riding along in his wheelchair next to the river. I wasn't the only recipient there were others, but he and I had a connection. I attended grief group in July after being absent for some months. The minute I walked in Sam says, "well look what the cat drug in." That was Sam. He had the great sense of humor and said what he felt. He told me once that although his body doesn't work right, he could still express himself with this - and he held up his middle finger... he made me laugh.

Sam was an artist, poetry writer and teacher. He taught me a number of life lessons over the past few years. He taught me about karma... At one point in Sam's ALS journey, he had to use the bathroom at Barnes and Noble and realized after sitting down that he was stuck on the toilet. This was quite a scary moment and he began asking the various men that came into the restroom for help. Now, picture yourself going into a public restroom and having someone in a stall ask you to come in and help... yep, according to Sam most left pretty quickly. But, as panic starts to set in, one man responded to Sam and said Mr. Sam is that you? Sam remembered the voice with the distinct accent because he had volunteered his time to teach English at the local community center. The man was one of his former students. He helped Sam get cleaned and dressed and back into his wheelchair. Karma.... yes, I believe it was karma.

He taught me about giving back... he said that when he was in public on his walks or at the store he made a point to speak with children. He said, as a child, disabled people scared him, especially wheelchairs. He felt it was important that he showed children that people in wheelchairs were just normal people. I found this very moving, because like Sam, I also was afraid of disabled people as a child. They were different and that made me uncomfortable. I think the more children spend time with people with disabilities, they will as Sam would say, "recognize that they are just people too... but with wheels."

He also taught me about death and dying. Sam did not shy away from the tough discussions or the elephant in the room. Let's be honest, our culture is very uncomfortable with the issues surrounding end of life decisions and dying. Sam was not. He was incredibly candid, he wanted to die. He had spent over 10 years with ALS and felt his journey was complete. By the time I met him he had long since worked his way through the many stages of loss and grief. He never wavered from his belief and acceptance of his own death. It wasn't depression, it was an interesting acceptance. In July, when I saw Sam his health was quite declined and his thinking was the same he was ready to go.

I got the phone call... Sam had passed and chose to exercise his right under the new California End of Life Option Act which went into effect June 9, 2016. A huge rush of grief hit me, my friend was dead and it was by his choice. Initially, I felt a pang of anger, why would he choose this, but it passed quickly, reminding myself, this is what he wanted. I know he is in a better place, but I'll miss his stories, sense of humor and frank discussions. Ultimately, we the living are the ones left to make sense and peace with loss. I will say it was worth the pain of loss to have known him for this brief time.

The family has decided to have a closed service with immediate family members only. That's ok with me, he lives on in my memory. I know he is at peace, there is comfort in that. But, if I'm being honest the world really was a better place with him in it.

How Much Does it Cost?

I find myself asking "how much does it cost" a lot. Generally, I'm not very thrilled with the answer to this question, but it has to be asked. Living this life and knowing all the wonderful PALS and CALS (patients and caregivers) I've determined that ALS is a disease of inequality. For an ALS patient, quality of life is directly affected by their financial situation, insurance, and/or access to benefits. 

The past few months we've been working to get Patrick's wheelchair controls changed from hand control to a head array. I'll shorten the story a bit and say what we ultimately found out was that the head array for his chair has a maximum benefit with Medicare that comes no where near the cost of the device. I'll give you the low down (I'm a CPA, so I like numbers)

Retail Cost - $9,700
Medicare - ($3,200)
Cost to Us - $5,500

Now to be fair the medical equipment supplier is a supporter of the ALS community and was willing to sell it to us at cost which is about $6,000. But even at that rate we were looking at about $3,000 out of pocket. Just to add to the financial consideration we were told that maybe Medicare will pay the 3,200 and maybe they won't; apparently they are not consistent and often will not approve this type of medical equipment.

Our New Head Array

Unfortunately, the loan closet didn't have a head array so that was out of the question. Patrick set out to find the head array at a lower cost - he's a bit of a dog with a bone kind of guy. He wound up finding a used head array on sale on eBay - yep, we now buy our medical equipment on eBay. He negotiated a deal and got the head array for $1,600, our medical supplier checked it out, gave a thumbs up and told us we got a good deal. We are now the proud owners of a working head array. 

We go through this type of financial consideration quite regularly, as do all ALS patients/caregivers. In just the last week I've talked with fellow ALS caregivers about prescription costs, access to medical equipment and insurance limitations. In every monthly support group (at least with caregivers) someone will ask "how much does it cost" or discuss financial challenges due to ALS. The ability to renovate your home, purchase a disability van, hire a caregiver or buy a head array does make the difference in the PALS/CALS quality of life. Sadly, I know that often decisions are made not because the item isn't needed, but because the cost is just out of the question. 

Another huge ALS expense is caused by the Medicare gap or "donut hole" (I hate to use this phrase because it really gives donuts a bad name). You enter the "gap" after $3,310 has been spent in prescription costs. In the gap only a portion of prescription costs will be covered (45% for brand-name drugs and 58% for generic drugs). After the patient spends $4,850 out of pocket then regular Medicare prescription coverage will start again. The good news is that the Affordable Care Act (Obamacare) removes this gap in coverage, but not fully until 2020. In the meantime this is a large expense for us and many other ALS patients. When I pick up prescriptions, the pharmacy staff generally points out that we are in the gap period and asks if I still want to pick it up. They must have people who opt out of medications for the remainder of the year when the Medicare prescription deductible is reset. A very tough situation to be in, but everyone has financial limitations.

Now before we get a bunch of really wonderful friends asking to send us money - we are ok. Patrick's plan always was to retire early, so he was a saver... not exactly what he had in mind, but it is allowing us to manage these costs. We're not rich, but I've seen others and we're doing ok. If you are feeling you'd like your $50 to make a difference to an ALS family, I can think of no other place, but to donate it to the Greater Sacramento ALS Association (here is the link to Team Timmons) - they provide the loan closet, caregiver grants, support and other services to ALS families. It is my understanding they are currently working on a grant to help patients make accessibility renovations to their home.

I'm not writing this blog to make a political statement nor do I have solutions for this inequality. Instead I'm just stating what I've seen, ALS is an expensive disease and money does impact quality of life for families. I feel grateful that we are able to manage, but I'm also acutely aware that there are others that live a much more challenged life because they just can't afford what they need. I'm having difficulty closing this blog because I want to leave you with a happy note or provide an answer to these issues, but alas I find I can't help you. 

Oh, we had a visit this past month from hundreds of goats that helped to remove the brush and dried plants in the neighboring wetlands - that was pretty awesome - so here is your happy note. See pictures below of the view from our front porch...

Goats are a very happy note!!

We love goats!