Editor’s note: This is the third and final installment about what it is like having a loved one with ALS.)
I always had the mistaken impression that when a person is put into hospice care, that was it, that death was probably imminent. A friend I knew had been placed on hospice care when he grew weak from cancer and within a few weeks was gone.
So when Dave’s social worker at the University of Florida hospital in Jacksonville, where he attended his ALS Clinics, suggested that we look into hospice care, I didn’t know what to say.
“Is he that sick that he’s nearing the end of his life?” I asked his neurologist, Dr.Michael Pulley, that same day. “Because I don’t think that he is.”
Dr Pulley looked at us and smiled.
“Hospice isn’t just for the last few weeks of a person’s life,” he said. “They are there for anybody with a terminal disease, regardless of the stage of their illness. They can help you enormously in the day-to-day things that you might be struggling with.”
It was true. I was struggling but trying to carry on as normal, as I tend to do. At that point in time, Dave was in a wheelchair full-time. He was terribly weak and I was having a hard time feeding him because his swallowing muscles were deteriorating.
Bathing him was a chore for us both. Close friends, to whom I will be forever grateful, had helped convert our bathroom, making it disabled-friendly, but it still was difficult work, because Dave was a dead weight.
A friend of mine who works in the medical field, told me to inquire about hospice care, but I wasn’t even sure if Dave would qualify. In my opinion he wasn’t sick enough, much less about to die.
But Dr. Pulley explained things in greater detail, so I decided to call a local hospice care service. In Clermont there are several hospice care providers from which to choose. One of those turned us down because Dave’s breathing scores were “too good.”
The second company, Vitas, had different criteria and within a week of Dave being accepted, his care began and he was put on palliative care, which means that his symptoms are manageable and made more comfortable. This care still comes under the umbrella word hospice.
For starters, he is assigned a nurse, Kaye, and a hospice aid who come in to bathe him. Also, within a couple of days, they delivered a new portable wheelchair for trips, as we had no vehicle to take Dave out in his electric wheelchair.
A social worker visited us and told us about all the services that Vitas offers. I was amazed at the extent, one in particular: The staff works through financial responsibilities with the insurance company, so the patient’s family never has to, which is a huge relief.
For all medicines related to Dave’s comfort, Vitas orders them from the pharmacy and they get delivered to the house. Again, another big relief, as I used to hate waiting in the long lines at the pharmacy as the time there took me away from looking after Dave.
A chaplain visited us several times, although you don’t have to see one if you would rather not.
In the earlier days, Ms. Christmas, a truly wonderful lady, came almost every week to give Dave a soothing massage. Sadly, he’s no longer well enough now to have massages any further, he’s all skin and bones, so it would be too painful. But back when he could enjoy it, we loved Ms. Christmas’ visit, as we would chat about TV shows, angels, our dogs and she was good company.
It is also a relief to know that I have access to a nurse 24 hours a day; believe me, that knowledge is a huge comfort when you are caring for a terminally ill patient and it takes some of the burden off your shoulders.
AN INDOMITABLE SPIRIT
This year, we have relied on our hospice team more than ever.
In January, not long after he celebrated his 50th birthday — a milestone he was afraid he might never reach — Dave almost died from COVID-19.
He was very unwell for months after and there were occasions when we all didn’t think he could possibly make it. I’ve lost count of the number of calls to family and friends in England, where we are from, to tell them that this might be it.
During all these scary, unpredictable times, Kaye — and Dave’s other nurse and aide, Sara and Samantha, plus his hospice doctor — have been there for us. Kaye has rushed to our house within an hour of a worried call and I am so grateful for that.
We have had many a laugh with his team and they are more than his healthcare workers, they are our friends now and I know that they care deeply for Dave, who is somewhat of an enigma the way he always seems to battle death and make a comeback.
AND YET …
Life is very much a roller coaster ride for us all and we have to live it one day at a time. How long he can keep going, who knows? Dave has been full time in his hospital bed since May and sadly, he’s too weak to get into his wheelchair now.
His muscles have literally disintegrated. He jokes he should be a human anatomy dummy for medical students since you can see every single rib and most of his bones. He can’t move his body, yet his brain is still alert, which is a desperately cruel way to live for my once super fit, busy husband.
Dave’s breathing has also deteriorated significantly over the past year and with many ALS patients, this is what usually leads to death. The muscles in his diaphragm are so weak, he can’t sit for long without using a breathing machine. My fear is that one day his breathing will just fail, and that will be it.
Yet amidst this fearful, difficult world we have been forced to navigate, there are still many good times. We have the very best friends who are family who visit all the time, family from England with whom we speak to often, and I know that if I need help it’s always there and that means the world to me and our daughters.
I admit that it’s sometimes hard to find the joy when someone close is gradually slipping away from you and there’s nothing that you can do about it. That’s the reality of this disease but despite everything, we treasure every moment we can get.
The other voices
Ever since I was diagnosed with ALS, me, Sharon and the kids have tried to adapt but not stop doing all the things we used to enjoy together as a family, like beach days and vacations. This was incredibly important to us all as we ticked things off my bucket list and got on making more memories together. I truly believe that they have kept me alive.
I’ve been in very dark places during my ALS journey. I was once a fit man who could build and fix anything. Now I’m a shadow of that person who lives in a hospital bed, unable to move but with my faculties still intact. It’s a terrible way for anybody to live and I’m sure if I were a dog, I’d have been put to sleep years ago, yet because I’m human, that isn’t allowed. At least not in Florida.
Living this existence, day in and day out, is only made better by my family and a lot of support from close friends. In that respect, I’m very lucky and I realize that things could be much worse. So I try to keep smiling and make the most of what I have, even when some days I wish someone would put me out of my misery.
ALS is definitely not for the faint-hearted. I am grateful that I have survived for so long. It’s only been since January this year that my health completely deteriorated, so I’ve had a good run in comparison to other people with ALS. I’m tired now, though and when I go, I don’t want people to feel sorry, but to celebrate a life well lived.
Emily Keeble, 23
Dad’s ALS diagnosis has consumed the past five years of my life. I didn’t go to college as planned, even though Mom and Dad told me to. I wanted to stay at home because with an ALS diagnosis, it’s terminal and I didn’t know how much time he had left.
I don’t feel resentful, but every single decision I’ve made — and will continue to make — revolves around Dad’s ALS. I know I’ve missed out on experiences — such as living the college life as it should be lived, in dorms — but I can’t be away, not while he is still here.
I see a therapist who has helped me make sense of a lot of it but there’s still so much I hate about this ALS life. I miss going to the beach with him, going out for a nice dinner together as a family. I hate to see him in so much pain sometimes and know there’s nothing I can do about it.
“This disease has taken away so much from my dad and my family but even on the hardest days, we try to make the best of it as a family and try to see the good things that still remain in our lives, despite everything.
Molly Keeble, 21
Me and my dad were so close. When I was growing up, I used to work with him on a Saturday and on holidays, so he taught me a lot about building and repairing many things, which has come in handy now that he can’t do anything at all.
I have found it very hard to cope with him getting sick. I miss my Dad more every day. Even though he’s still my Dad, he’s really not the same person. He gets tired so easily and he’s anxious a lot of the time whereas he was always more easy going.
It’s difficult seeing him deteriorate before our eyes. Now he’s full time in a hospital bed, unable to even get in his wheelchair to come out and sit with us when we have dinner. It makes me so angry. ALS is incredibly unfair on everyone who is affected by it. Dad may be the sick one but our childhood disappeared the minute he was diagnosed. I wouldn’t wish this disease on my worst enemy.
Faith Keeble, 15
My parents didn’t tell me what was going on with Dad’s health when he first got sick. I think I was 9 years old and they didn’t want to worry me. Mom told me that they felt I was too young to have to deal with that kind of news, but I don’t believe there’s ever a good time to hear that your dad is dying, no matter how old you are.
I feel robbed of my Dad. We used to play basketball and ride horses together. We used to play in the pool together and have fun. My sisters had that right up until their late teens, but I didn’t because I was so young when he was diagnosed. Now I find it really hard to remember what he was like when he was fit and walking, and that makes me so sad, my mom too.
I’ve just turned 15 and I try to spend time with Dad in his bedroom. We watch movies, I show him funny Tik Tok movies and we have a laugh, something we always did together because we have the same wicked sense of humor. I try to make the most of him being here while I can, although it’s horribly hard watching him getting sicker.
I wish our lives were different. I hate ALS so much and I feel like I’ve lost so much of my Dad already.