His pride will be the death of him.
He has ALS, but the struggles and the stress of the disease were only compounded by an ego that even still, refuses to accept the diagnosis.
He received the news two years ago. A strong, fit man who took great pride in his physical prowess, is tearing apart his family; the stress of the sudden caregiving and his quick progression are taking a toll on his wife. His refusal to ask for help, let alone accept any offers of support. He goes so far as to refuse support and care for his wife. She is seldom allowed to leave his side, and any suggestions for others to help is quickly taken off the table for discussion. His idea of what honor is will be death of the both of them.
Who am I to judge how someone navigates a death sentence?
My role in their lives is simply to listen. To offer suggestions, stories of possible outcomes and ways to alleviate the often-overwhelming medical jargon, equipment, therapists, and progression. When families reach out, my role is to soften the blow, and hopefully offer a ray of light while they are traversing through a blackened tunnel. I often compare and count my blessing as I listen to many stories, and todays was no different. I have heard of stubborn men, but this man may win the prize.
His independence will be the death of him.
His breathing and speech are quickly becoming problematic. Yet when there was a suggestion over a year ago to start learning about feeding tubes, he simply stormed out of the office. He didn’t need a feeding tube. He never darkened that doorstep again. Matthew’s situation was similar in that, very quickly into his diagnosis, it was suggested he have a feeding tube placed. “Just in case” was the suggestion. You don’t have to use it, but it is there if you need it. And by having the feeding tube placed early on in the diagnosis and progression, it becomes simply one more task to see to, but is definitely the lesser of the stressful tasks. Thankfully, Matthew agreed. Less than seven months after his diagnosis, his feeding tube was inserted, and after a half day stay in the hospital, we left and went about our lives. I flush the tube, clean around the tube and could probably replace his by myself if need be. (We have a backup tube in the closet….just in case)Her husband refused to even discuss the option, preferring instead to believe that he would be healed and that his diagnosis was a mistake.
Now, as he is months, maybe weeks away from dying.. choking on his own saliva, barely able to eat or drink for hydration, I can’t help but wonder if he regrets his actions. Does he wonder if maybe having a simple procedure such as a feeding tube could have prolonged his life? At the very least, maybe it could have kept him from starving to death, or dying of dehydration, or pneumonia brought on by choking and bacteria entering his lungs. There will need to be IV’s inserted to help alleviate pain if his veins don’t collapse from the dehydration. Maybe his stubbornness, pride and ego could have been spent on better battles?
His vanity will be death of him long before ALS.
His wife recalls walking into their living room, having left to go grocery shopping. There, she finds him doing wall squats, as his best friend is tossing a medicine ball for him to catch. He is straining, determined to gain his strength back. His refusal to accept the disease and limitations only progresses the ALS. He pushed himself beyond what his body could repair, and two days later, his legs simply stopped supporting his weight. He has never walked again. He has spent the majority of the last year in a recliner. His wife bears the brunt of his ego, and now physically moves him from the bed, to the commode and to a chair, with the help of a manual wheelchair. His pride once again stopping him from seeing a power wheel chair as a resource. He has refused all help to learn how to navigate and adapt.
Matthew texted me, just over a year into his diagnosis. “I am fine, please don’t worry.”
Of course, nobody in the history of being told not to worry actually doesn’t worry! I had been sitting in an evening class, working towards a bachelors degree. I rushed out of the classroom, refusing to even offer an excuse for the disruption. Matthew had fallen in the parking lot, and with my children witnessing his collapse and no way to help, Matthew simply decided it was no longer worth the risk or the potential trauma. He began using his power wheel chair to alleviate any potential falls, and he gave up his last aspect of health and independence. He stopped driving all together.
This man is now on Hospice. He refuses to let his wife utilize the respite care that is offered. Two times a week, she leaves for two hours to play tennis. It is her only outlet, her only reprieve. Matthew is a former Marine. I honestly don’t know what we would have done without the help of the VA. Within two years of his diagnosis, we received four hours a week in aid and attendance. The aid helps with laundry and dishes, and the caregiver helps Matthew urinate in a handheld urinal.
As his disease has progressed, we have gone through so many caregivers, I have lost count. But I know how incredibly lucky we are to have the help we have. I also know how difficult it must be to accept help from strangers for intimate situations such as using the bathroom, but I cannot always be there to lend a hand and it is nice knowing I don’t have to worry about him when I need to leave. I still do the majority of the care for Matthew. I feed him, bathe, shave and cut his hair. I still do almost all of the transfers, and usually push him to eat more often throughout the day than he would prefer. I nag him to get sunshine, and to rest. And I know how incredibly blessed we have been to have in- home health care; therapists that help with range of motion, and a caregiver four days a week for six hours a day. It allows me to run errands, spend time with my children, work from home, and meet families navigating this new world.
I honestly doubt if they had caregiving support daily that he would allow her to have a break…day in and day out. His disease is so far advanced he needs to use a computer to speak, his eyes straining against a foreign software program. He can no longer control his bowel movements and wears diapers to contain the mess. Every day, she cleans him up, repeatedly bathing him, dressing him and setting him back in his recliner. She tries to feed him but it is getting too difficult.
His stubbornness will be the death of him.
I wonder how she has cared for her husband for the last two years, watching the man she has been married to for over forty years slip further and further away from her and not feel such grief and loss. I wonder how she is not scared, after battling breast cancer last year by herself, including a mastectomy to remove any residual cancer, and jumping right back into caregiving, putting herself last, in order to put his care first. I wonder how she is not furious that they are facing foreclosure, losing a business, as well as learning her husband let his life insurance lapse shortly before his diagnosis, since he felt it was a waste of money…how is she not furious that when he passes, she will find herself having to go back to work at almost 70 years old having lost everything they ever worked for in this lifetime together?
His refusal to accept his diagnosis will be the death of him…
I work from home part time. I have income from a rental property. I know I will be ok, even after Matthew is gone. While we are far from rich, we get by. We are able to pay our bills and help others from time to time. I am grateful every single day for the help and resources we have. While not much, it is beyond helpful when I compare our situation to others. There is not a day that goes by that I am not fully aware of how lucky I am that we are not in that same situation. How does she not curl up in a ball and give up, when she realizes that whatever was left of their savings was spent on holistic doctors who “couldn’t promise a cure” but encouraged a three week stay to relieve him of heavy metals in his body. In the end, it only relieved them of the dollars in their bank account.
Matthew relied on his specialists to teach him about the disease. He listened to them and was unwilling to chase potential cures or treatments that had no scientific data to back it up. Her husband refuses to see a doctor, nor learn about ways to navigate and potentially extend his quality of life. During times when I am at my breaking point, I count my blessings. I am beyond grateful for Matthew. His quiet calm, his ability to think of others, and his willingness to learn new ways to adapt to the challenges that he faces every day.
I can’t help but feel my heart break a little when I think of what burdens that woman carries. She is alone in her struggles, even as she has been by his side.
ALS Fact of the Day~ 