Day 24 …

John Muir Woods

Minke left this earth 24 days ago. Am I supposed to feel fine by now? Well, I don’t. I feel worse, if you must know. As the reality sinks in deeper and deeper, and I look about and see this warped world without my Love, I feel worse.

I want to write about the last days with him. I’m doing this more for me than anyone else because I want to remember. I don’t feel like writing or talking about it, but the longer I wait, the less I will remember. It’s already starting to fade. Let’s face it, the last four years are a complete blur.

Minke entered home hospice on September 19, 2023. He left the hospital and came home on my birthday. At that time, he had decided not to get a tracheostomy. I was all for that. I thought his quality of life would be much better without one. Possibly shorter, but definitely better.

During the first month Minke was home, I saw him visibly relax. He was calmer. He laughed more. He told jokes, spoke clearly, and ate very well. He would occasionally ask for a beer or a small taste of his beloved Macallan Scotch. Always sipped through a straw. Always with a smile on his face.

I thought things would slow down once he was in Hospice Care, but they never really did. Caregivers came every day from 9 AM to 5 PM. Hospice workers popped in every now and then! Yes! Only now and then. (*Remind me to tell you how I feel about Hospice! It’s not good! Believe me, it’s not what you see in the movies! More on that later.)

I didn’t know how long Minke had left, but based on what the doctors said, I didn’t think he would make it to Thanksgiving. But every day, he seemed okay. Not better. Just not declining. He was holding his own. And we talked, or rather, I talked! By late October, it was harder for Minke to catch his breath so he started communicating through the computer.

He had recorded his voice way, way back in late 2021 for this very purpose. It’s called voice banking. By now, he no longer had use of his hands. So he communicated with something called Eye-Gaze. On his computer, mounted on his bed directly in front of him, he could type with his eyes. He could turn lights on and off. He could close the shades. He could turn the TV on and off. Pretty damn amazing technology. So, he would talk to me with the robot Minke voice through the computer. He would include terms of endearment. Like, “Love, please pull the covers down. I am hot,” or, “Debbie, you are my Love,” said the robot-voiced Minke.

He would tell jokes with the robot Minke voice, and they wound up being even funnier because of that monotone computer voice telling a story that really needed human emphasis. He continued making me laugh. We had made that pledge to each other to laugh every day. Well, we didn’t necessarily succeed every day. There were plenty of bad days where there was no room for laughter. But we laughed more than you might think given the circumstances.

November 25, 2023

I wrote about Thanksgiving earlier in this blog. Yes, Minke made it to Thanksgiving. Though we don’t celebrate Christmas, Minke was there for that too. And New Year’s Eve, and New Year’s Day. So the doctors were wrong. They said Minke had 1-2 months back in September, and he wound up staying 4 1/2 months! Don’t listen to doctors when they give a prognosis! There are many other factors that can keep a person here. Minke just wasn’t ready to leave! So, what kept Minke here? In a word … Love. That is the answer, plain and simple.

But, ALS is a progressive and aggressive beast and things became more and more challenging. Minke was using a Bi-Pap machine and though he started out wearing it only at night, he wound up using it almost 24 hours a day. Took off the mask only to eat or go to the bathroom. Minke fought that mask from the start. But that fight became worse, as he could never get comfortable with the damn thing. The fit was driving him crazy, mainly because his allergies were causing congestion and the mask would leak air.

The caregivers and I were constantly loosening and tightening the mask for Minke at his request. Nothing seemed to be working. And then we all realized that Minke had developed a pretty nasty wound on the bridge of his nose from the hard-to-fit mask.

Minke had consistent problems with skin breakdown. It’s part of the disease. But a wound is bad news. It could get infected, and then that makes everything more complicated. And scary. Hospice did bring some antibacterial lotion for that wound and put a solid bandage on it. But now, he needed that wound to heal, and wearing the mask would not allow that. They set up the oxygen on January 10th, and Minke had the oxygen tube up his nose instead of wearing the mask. I don’t know if that caused the final decline, but I certainly don’t think it helped.

The next day after the oxygen came, the struggle to breathe truly began. I remember calling Hospice because Minke was whispering, “Help … help me …” That will echo in my head till the end of my days. His greatest fear was that he would struggle to breathe, and here it was happening.

I called Hospice in the middle of the night and I was yelling at them. No, I’m not proud of that. I have a hard time remaining calm and not getting emotional in the best of situations. This was the worst-case scenario. I screamed into the phone, “THIS IS SUPPOSED TO BE COMFORT CARE!! HE IS NOT COMFORTABLE!!!!

The nurse showed up at 3:30 AM. The nurse was kind and patient. I have no problem with the individual nurses Minke saw. It’s the Hospice as a whole that causes me distress. The nurse upped the dose of all Minke’s meds that night. But the problem was that the morphine was making Minke sick. Minke knew it was the morphine because his mind was sharp and he always knew what was going on in his body. He wanted to throw up but he had no muscles to do so. He wanted to spit, but could barely get out the smallest stream of saliva.

This went on for TWO MORE DAYS!! Minke would sleep very little, and when he did wake up, he couldn’t breathe. The morphine was making him worse, but it wasn’t knocking him out. He said he wanted me to call Death with Dignity. Oregon is a “right to die” state.

Now, here’s the thing … Minke and I discussed Death with Dignity when he was first diagnosed in the fall of 2021. He didn’t blink when I brought it up. He said, “No. I want to be here for as long as possible.” Kudos, my love! I applaud that. But between you and me, if I was the one with ALS, I would have looked into it. But Minke didn’t want to, so that was that.

But now he was suffering and panicking. And he wanted to die, and fast. Anything to end the misery. My heart was breaking for him, but I knew it was too late. I made the call anyway. Death with Dignity says you have to be able to drink or eat 2 ounces of liquid or soft food in 2 minutes or less. They said he could sip through a straw, or if it were food, I could hold the spoon, but they were very clear that the “cocktail” needed to go down in 2 minutes. Not to mention that it took 15 days to get all the appropriate paperwork from the doctors and everything else that comes with this decision. The woman I spoke with said we could waive the 15 days, but we were out of time. There was no way Minke could take the cocktail. He couldn’t swallow anymore. It was the end, but I was bound and determined to make sure he had peace before he left.

June 6, 2023

What wound up happening, was I adjusted his meds. That’s all that he needed. But it wasn’t through the help of Hospice. Oh, no. They just wanted me to keep pouring morphine down his throat, even though it was making him nauseous. We have a friend who is a retired doctor. He called me, and when I told him exactly what was happening, he told me what adjustment to make.

I trust this friend. Minke trusts this friend. And so, I did what he said, and lo and behold, Minke felt more comfortable! He was no longer struggling to breathe. I cannot say enough how thankful I am that this man is in our lives. But he loves Minke and he helped me help Minke, even at the bitter end.

Minke was out of distress and breathing better with the oxygen. I stayed up all night with him the Saturday night before he passed, just watching him breathe. No need to call anyone, I just held his hand all through the night and watched his chest rise and fall.

The next day, Sunday, I was talking to him and he was smiling. I thanked him for the best decade of my life. I thanked him for choosing me. I thanked him for loving me. We both smiled and the sparkle was still there in his shiny blue eyes.

I know Jupiter had a similar experience, having a conversation with Minke and Minke responding with smiles and sweet tears. And then I noticed Zelda, up on the couch, staring at Minke, and Minke staring back at her, and of course, smiling.

As I play this memory back in my mind, I realize that Minke was saying his goodbyes to us. He was ready to let go, and he needed to have one more bit of connection with the three of us. I watched him fall asleep as the morning went on. Around noon or so, I noticed drool on Minke’s chin. I put a washcloth underneath to keep him dry and realized he was unconscious. A hospice nurse came about 1 pm and confirmed this.

I felt like I was going to throw up. It was happening. The signs were all there. I had been worried about this moment for so very long, and now … it was here. Minke was dying.

You may have heard that the hearing of a dying person is the last to go. When they are unconscious, they can still hear what is going on around them. You shouldn’t talk about an unconscious person in front of them; you should talk to them. Which we did. Both Jupiter and I were very aware of this, and we chatted with Minke as if nothing were out of the ordinary.

Again, I sat up with him all night. I changed the washcloth under his chin regularly. Jupiter plumped up his pillows to make him more comfortable. And he looked comfortable. He looked peaceful.

I turned on the television and played meditative music with scenes from nature. You can find these on YouTube. They created a tranquil environment. And this music filled the house for hours on end.

Monday morning, our regular nurse arrived at 9 AM. We continued through the morning as usual. Jupiter had been taking Minke’s pulse-ox throughout the past few days and it was always around 90 or 91. A little after 12:00, he took it again, and it read 76. “Uh-oh,” I jumped up. Jupiter and I both were at Minke’s side and the nurse was feeling for his pulse.

“Does he have a pulse?” I asked. “Very faint,” answered the nurse. Jupiter and I were both holding on to Minke, and Jupiter placed his hand gently on Minke’s chest. Minke took a big breath of air in, and then … he was gone. 12:20 PM. January 15, 2024.

The absolute Love of my Life, the one I had waited to meet for so long, was gone. But everything we had wanted to say to each other had been said. We expressed our love every single day. I am grateful that he was able to go peacefully and that the struggle he experienced ended before he left this earth. He looked as beautiful in death as he had in life. He looked angelic. Sleeping blissfully, serenely.

Thank you for reading and following our story. I’ve never been so up close and personal to death until now, and I have learned so much and my perspective on everything has changed. Moving forward will not be easy.

And currently, I can't breathe. I'm finding myself in the labyrinth of bureaucracy. The catch-22 of calling agencies and being put on hold and not getting to speak with a real human, and being hung up on only to start all over, and round and round and round we go. It's soul-crushing. And I miss him. And I ache. And I don't understand what I'm doing because my brain is in a fog. I can barely move. I thought caregiving was hell. No. He was here. I could see him, touch him, talk to him, smile at him. No, caregiving was a walk in the park compared to this current hell I'm in. And yet, the world does not stop. And I must move forward somehow.

It doesn’t get easier with time. I know this from other losses I’ve experienced. But I will always know that Minke loved me with a fierceness I have never known before. We were an extraordinary team. A sensational couple. Perfect and compatible in every way. Oh, what an incredible soul he was. And ours was a love story for the ages.

I love you, Minke. I always will. You are forever in my heart.

And in my pocket.

new normal

Minke Ceilidh May 11, 1969-January 15, 2024

I don’t think we talk enough about how quiet the road gets. how long the waiting feels. how lonely healing can be. I don’t think we talk enough about how undone we become in the valley of grief. or how enormously we must stretch just to fit ourselves into some kind of a new normal and dare to call it life again. And I don’t think we talk enough about how we have no other thing left but to gather up our heavy limbs and carry on. Because the earth keeps on spinning. the sun keeps on rising. and the days keep on bleeding one into the next, regardless of the moment that made all the minutes inside of our hearts stand still.

~ullie-kaye

And The Beat Goes On …

Zelda has diarrhea. You needed this information, right? Isn’t that why you’re reading this blog? Well, I tell you this because I wanted you to know why I’m more sleep-deprived than usual. She’s got the runs, so we’ve gone out every 2 hours for the past two nights! Poor puppy. Poor Debbie.

On our walks through the neighborhood, I couldn’t help but notice how quickly the house decorations have gone from spooky Halloween pumpkins and inflatable giant spiders to wreaths, poinsettias, and brightly-colored lights. Where did the time go? I’m truly flabbergasted that everything seems to be moving at warped speed. I remain in my Home Hospice Bubble and feel completely ambivalent about the goings-on in the world. Seems irresponsible. So be it …

So … tomorrow is Thanksgiving. It seems as though yesterday was the 4th of July and tomorrow will be … what? Who the hell knows what tomorrow brings?

There will be no turkey dinner here because Minke can’t swallow very well. There will be no mulled wine or spinach artichoke dip appetizers or green bean casserole, or family and friends pretending to get along all in the name of gratitude.

There will be a nurse here. We are spending the holiday this year with a nurse. This person will be making time and a half working on a holiday. Good for them!

And there will be mashed potatoes and pumpkin pie, not because they are holiday fare, but because of their soft and easily-swallowed consistency. And there will be gratitude. Most definitely there will be gratitude.

Because honestly, I didn’t expect Minke to be here for Thanksgiving 2023, but sure enough, my Minke is still with us, fighting the good fight.

And for that, I am grateful.

Hospice

Minke has been in Homecare Hospice for two weeks. I was naive to think that our lives would suddenly become peaceful and quiet. These last two weeks, like everything else about this ALS journey, have been a whirlwind.

First, came the onslaught of the caregiving agencies we use. They needed to come to our home and assess the situation. Then, the hospice workers themselves were here. They needed to do intake, and ask extensive questions that Minke was unable to answer due to poor breathing, so I spoke for Minke and answered questions about his life as best as I could.

I felt the grief rise up in my throat as I spoke of our life together, and it felt as if I were being choked. It got stuck in the middle of my throat and I gagged and fought to push it down so I could continue my story. The Hospice Social Worker said, “It’s okay to cry, Debbie.” And I responded, “No. Not here in front of Minke. Not now.”

My grief, you see, has become quite personal. I know it’s upsetting to Minke to see me falling apart. And it’s uncomfortable for others to see how tremendous my emotions are. If I can help it, and I can’t always help it, I release my sorrow in private.

In the search for something, anything, to help me cope with all this, I discovered a video that surprisingly helped to calm me down. I will share it here because I found it to be very helpful. Practical. It helped to take away some of my fear.

The acceleration of this disease has never ceased to amaze me. Since Minke has been home and opted for Hospice Care instead of the tracheostomy, I’ve seen him appear more calm and relaxed. But I’ve also seen his decline. His fingers are now curled like little puppy paws and his hands have become completely useless. His speech has slowed down quite a bit, and talking is not always possible because of his inability to breathe.

And yet, the visitors continue to flood our home. And though I want Minke to see his people and vice-versa, I see the tremendous toll it takes on him. I go into Mama Bear protective mode and I want them all to leave because they are sucking up all his energy.

I bought a twin-size rollaway bed and set it up right next to Minke’s hospital bed. Last night, for the first time in a year, I slept beside my husband. I held his curled-fingered hand in mine, luxuriating in the warmth of his touch. Zelda was close by in her bed, and the three of us were all together again in the same room. Like before. As it should be.

I don’t know how much time he has left. But I see his body beginning to shut down. I find myself staring at him as he sleeps, watching his chest rise and fall, loving him, cherishing these days. I ask the Universe for strength. And peace for Minke.

HAPPY BIRTHDAY TO ME!

Yes, today is my birthday. It will certainly be one that goes down in the history books.

If you’ve been keeping up with this blog, you know that Minke was scheduled for a tracheostomy on Friday, September 29th. On Saturday night, September 17th, I needed to call 911 because Minke couldn’t breathe. They took him to the ER and wound up admitting him to the ICU.

There is a lot of stuff that went on in the ensuing days. But I’m gonna cut to the chase. The VA health team was working to speed up the surgery. So many i’s needed dotting and t’s needing to be crossed. I cannot say enough about the care that not only Minke received during this time but the care I received as well. I received phone calls each night from the doctor for updates, questions, and ways to alleviate my anxiety. While at the hospital, I was treated respectfully and my questions were welcome.

But yesterday, Minke and I were alone in the room, and he told me he didn’t want the trach anymore. He was out of gas. Done. He wanted to come home and he wanted hospice.

Needless to say, this took the wind right out of me. We talked as much as Minke was able because he can’t really breathe, so talking is difficult. I told him I wanted whatever he wanted, and frankly, I never wanted the trach in the first place. And as long as I’m speaking frankly, I think his pulmonologist (who I really have choice words for … I don’t like this dude at all, and I hope he reads this) I think he waited too long to schedule everything. He took way too long and now it’s come to this.

The circus that would be the care for Minke with a trach was going to be way too much. And at this point, all Minke wants is peace, quiet, and time to spend with me, Zelda, and Jupiter.

This morning, I received a call from yet another doctor. I answered the phone and he said, “Is this Debbie?” “Yes, it is,” I answered. The doc said, “First of all I’d like to wish you a Happy Birthday. I am Minke’s doctor and his wish for your birthday is he would like to come home today.”

And so, as fast as I could get there, I went to the hospital with fresh clothes and the wheelchair and we began the long process of getting discharged.

Just to let you know, there have been a million conversations in the interim. We spoke with a wonderful social worker who explained hospice care. We spoke to the wonderful doctors who let us know what to expect and laid out exactly what hospice would entail. We get it. There’s not a lot of time left. But Minke is home now and it is the best birthday gift I’ve ever received.

I need to stop writing for now and let hospice know we are home, but I wanted to spend some time with my family before getting down to business. And, I wanted to update all of you because your words, kindness, support, and love have meant so much to us.

We are at the end-of-life stage. Minke’s final chapter. I will be here and holding his hand every step of the way. And as we look into each other’s eyes, he is smiling, and those blue eyes are twinkling. This is the greatest love story ever told, and I’m so grateful I got to spend the last decade with my B’Sharta.

Walking into the Unknown

What lies ahead?

It’s been five months since I’ve updated the blog. I needed to take a break from it, but now we have a major change on the horizon and I wanted to let everyone know what’s up.

Minke had a solid three months of stability. For the first time since this journey began, we experienced 3 months of consistency with no progression of the disease. It almost felt normal, though I no longer know what normal feels like.

May, June, and July we spent time outside in our beautiful backyard sanctuary. We laughed a lot. We had some extremely hard but necessary conversations. We survived four months of construction workers who were renovating our bathroom, and though that stressed me out to no end, Minke kept making me laugh about it. And now that the bathroom is finished, Minke has gained back a little privacy and is now able to have a shower instead of sponge baths. Definitely something worth celebrating!

Minke with his son, Jupiter, July 2023

But on August 1st we received word that Minke’s pulmonary function had gone down again. The decline of his lung capacity has been consistently going down since last December. By August, Minke’s numbers were under 50%, so guess what time it is now? The time to get the dreaded tracheostomy is now upon us.

The surgery is scheduled for Friday, September 29th. But we have loads of appointments to fit in pre-surgery, so suddenly September has become an extremely busy month. Minke must stay in the hospital for 2 weeks after surgery, and he will only be released to come home if we have 24/7 care in place.

Minke can never be left alone with the trach. We currently have two caregivers and two RNs, and more are on their way. There are a lot of hours to fill. Overwhelming, much? There will be people in the house at all times. Day and night. It’s weird. It’s stressful. I need to make my peace with it. They’re helping Minke after all. And in so doing, they are helping me.

The trach scares the shit out of me, but I will be trained on how to clean it and how to use the suction device when Minke needs it. Of course, he will no longer be able to eat through his mouth. For me, this is the worst. Food is love in my book. Food is how I show my love to Minke. And now, that simple pleasure will be taken from him. We’ve been grieving a lot of losses all along the way. This is a HUGE loss!

Further, Minke will no longer be able to speak. He will use his eye-gaze computer to communicate. Long ago when Minke was first diagnosed, he did something called voice-banking where he recorded his voice for the time when he could no longer speak. I clearly remember thinking we would never get to that point, but I was in complete and total denial two years ago. I couldn’t see what our future looked like. It looks like today. We are here. I will hear the AI Minke speaking and I’ll take it. Any voice is better than no voice at all.

So that’s the update. Not exactly good news, but there is no good news when you’re fighting ALS. Have I mentioned how much I detest this disease? It never gives anyone a moment’s peace. Not the patient or their family.

The future is still unknown. I still can’t see what it looks like. All I know is that Minke will be able to breathe a little while longer. He will be here with me and Zelda, a little while longer. I will take every single second I can get.

The Day-to-Day Today

Minke and our Zeldie Girl! April 18, 2023

To those of you who think I’m some sort of hero for taking care of Minke, believe me, I’m not. I’m human and I’m being pushed to my limit. 

Minke thanks me all the time and says, “You are a hero. You could have left a long time ago and you didn’t.” I’m appalled by this. What kind of monster would that make me? To leave Minke? NO! As hard as things are, I’m definitely not the type of person who would simply run away when things get too difficult.

But don’t, for one second think that I don’t imagine what it would be like to be out of this situation. But when I fantasize about it, I fantasize that Minke is well; I don’t fantasize about running away.

With every progression of Minke’s illness that leaves him further incapacitated, is one more thing I have to do for him. 

He can’t put his glasses on. He can’t put his headphones on. He needs my help to have a drink of water. He needs the wrapper of a cough drop removed. He needs that cough drop in his mouth. He needs the covers pulled up. He needs, he needs, he needs …

It also feels to me like Minke’s personality is changing. Why wouldn’t it? The changes occurring to his body are unprecedented, rapid, and scary as hell! He does share some things with me about what’s going on in his head, but obviously not everything. I think he’s taking inventory of his life. Honestly, I’m taking inventory of mine. The reality of death can make one very philosophical.

But what I find the hardest about his changing behavior, is I feel like I can’t share things with him like I used to. When Minke is having a good day, it’s both a pleasure and a relief. He’s animated, funny, and talkative. But when I want to share some of my teeny, tiny little joys (which are few and far between, believe me) he’s not interested. He’s distant. Off in his own world and not engaged with what I’m saying. I see his glazed eyes, and then I feel like a dumbass for trying to laugh with him when he’s obviously not feeling it.

And I feel hollow and empty, because I wanted to share something I found funny or lovely or cool, and he’s not there for me. I’m feeling more and more solitary, even though there are many people around the house on a daily basis. But my best friend? He’s checked out.

I have a friend who is a potter. I love his work and I’m going to give him a plug on this blog right here and now. But I’m bringing this up, because today, I received a new pot I ordered, and I am in love with it! And I was so excited about it, and I went to go show Minke, and I got … NOTHING! And the soundtrack in my head went, “Wah, wah, wah.” It pissed me off. I don’t get many moments of fun and giddiness and I wanted to share this with him, and he was not into it. I’ve been making so many compromises about so many things since this journey began. And I keep saying it doesn’t matter. But it does. And it hurts. And as I’ve said before, I keep losing different parts of him and the ache is excruciating.

So, here is my beautiful new pot! I love, love, love it. It’s now sitting on top of my very groovy little table on my front step. Moving closer and closer to the bohemian vibe I love. My friend’s name is Mark and you can find his shop on Etsy. It’s called MuddyRiverClay and his pieces are whimsical and delightful and they bring me joy. Have a look! And thank you, Mark, for all the charm and magic your pieces of art bring me.

Is it tiring for you to read about all this? Believe me, I understand. Is it boring for you to read about all the things that must be done in order to care for Minke? Are you rolling your eyes? If you are, I definitely get it. If you’re exhausted from reading about it, try living it.

We squabble. We bicker. No different than any other married couple, except it is different. I lose patience and Minke gets frustrated and it’s kind of a constant thing. Would I prefer the alternative? OF COURSE NOT! I know I would have much more patience if I wasn’t always in chronic pain.

I want to eat my dinner after feeding him his. But when I go to sit down, he needs something. And then I try and eat and he needs something else or he can’t get comfortable or he needs his Bi-Pac mask adjusted. So then I’ll go sit down to eat and wind up warming up the meal at least 3 times.

We no longer eat together. And we no longer sleep together. And we don’t do much of anything together. He says, “Let Molly be my caregiver so you can be my wife.” But I don’t feel like a wife. I feel like a caregiver, and sometimes I feel like a babysitter.

You have thanked me for my honesty and for being real. Well, here’s a deep dish of reality for you. My living room smells like a bathroom because that’s where Minke uses the commode. I’ve never lit so many candles in my life. Sometimes I’m undone by all the clutter of the many, many medical supplies. I thought I had gotten over that, but nah … seems I’m still very bothered by it.

I realize this post has turned into a rant, and I should have just posted all these thoughts in my ALS Spouse Caregiver support group. Most of the posts in my group are like this. We all understand each other. It’s a safe space. We all know what it’s like to live with a terminally ill ALS patient. We all know it’s an impossible situation and we either learn to live with it or let our resentment get the best of us. The resentment, at this stage, is pointless. It’s not Minke’s fault. I’m basically feeling less resentful these days. But the constant fatigue has taken a toll, way beyond anything I’d ever imagined.

I’m going to take a break from blogging for a while unless there’s something major to report. Well, it’s ALL major, but you know what I mean. Barring no immediate emergencies, this is going to be life for the indefinite future. Until Minke gets worse. Or gets the trach. Or both.

I suppose I wanted all of you to know I’m not the warrior some of you think I am. I’m a human being with more flaws than I’d care to admit. And I feel guilty as hell when I snap at Minke. I already told him, that when he’s no longer here, I’m going to relive those moments over and over and never forgive myself. I know it.

I hope I’ll be able to forgive myself!

Artist: Lisa Aisato

Home

To clarify, the photo above is not my home, but it’s what I’d like my home to look like. It’s very Boho! Okay.

Moving on …

Minke is home from the hospital. I brought him home last Wednesday afternoon. He was at the hospital in total for 5 days. One full day in the ER and four days upstairs.

First, I’d like to say THANK YOU to everyone who sent well wishes, love, support, prayer, and all the loving messages, texts, and emails that were sent. You have to know how very much we both appreciate your kind words and blessings.

And now a word from Minke:

The texting, phone calls, emails, Insta, and Facebook Messenger are frankly out-of-control for me. This is the place to come to get updates because I only have the energy to tell the details once. It’s too, too much to go into the story more than that. I will always do my best to update the blog; so please respect that and know the details will land here eventually. That goes for you too, family. I love you very much, but I’m spread way too thin these days. Read the blog!

If you are looking for good news or some sort of fairy-tale ending to Minke’s tale, you’ve come to the wrong place. Never forget that we are dealing with the most horrible, insidious, despicable disease that ever was. ALS fucks with everyone involved. The patient. The spouse. The caregiver. The doctors. The nurses. Everyone! ALS doesn’t give a shit, and if ALS was a person, it would be a psychopathic serial killer who takes pleasure in causing pain. Sadistic as fuck! Excuse my language. Or not. I don’t care. I’m very angry. Why don’t the experts know? This disease is 160 years old! How many more people afflicted with this disease have to live with unanswered questions? It’s torturous.

Minke was at the VA hospital. In all the hospitals that we’ve been in since this began, the care in the ER at the VA was by far the best. Remember, he was in delirium and they were right on top of getting him tested and diagnosed. But here’s the thing: The urine labs came back normal. The blood labs came back normal. His low-grade fever went down to normal, and they couldn’t find anything here. So, they admitted him.

By the time he got upstairs at 7 pm on Saturday night, he was lucid. Why? He had spent all day in the ER like a blathering maniac and then, all of a sudden, lucid. No explanations. Minke’s white cell count was slightly elevated indicating there might be an infection. He was given an antibiotic, even though they could not find the source of the infection. His first night in the hospital was non-eventful. He wore his Bi-Pap mask and mercifully slept.

During the hospital stay, Minke had a CT scan, and a CAT scan, both ruling out stroke and bleeding in the brain. He got an EEG to rule out seizures. It was normal. And finally, he got an MRI which also came back normal. The docs were scratching their heads. But that’s what ALS wants them to do. Remember NO TWO PATIENTS ARE ALIKE. So you just have to make an educated guess. UGH!!

A lot of what I’ve written I already put in my last post. So I will skip ahead.

Upon discharge, they had no definitive answers for what happened to Minke. Because ALS is a sneaky son-of-a-bitch and wants to keep us constantly guessing. The pain Minke experienced is very likely the muscles in his stomach and diaphragm atrophying. ALS is a disease where the muscles literally disintegrate. We’ve already seen this in Minke’s limbs. Now, it’s happening internally. The muscles in his stomach and diaphragm are spasming as they deteriorate and ultimately as the nerves die, the pain will eventually stop. When? Don’t know. So far, Minke hasn’t experienced the Level 10 pain he had in the hospital. But it could happen again at any time. I’m on constant alert.

Minke’s also much shorter of breath than he ever was before. Was the delirium caused by a lack of oxygen and an abundance of C02? Was it C02 poisoning? Don’t know. Docs don’t know either.

ALS is also associated with something called Frontotemporal dementia, where portions of the frontal lobes in the brain atrophy. Not all ALS patients get this type of dementia, but we need to be aware of it and on the lookout. The neurologist said Minke’s delirium came on very quickly, so it’s not likely that it’s FTD, but of course, we need to keep monitoring it. We can’t rule anything out right now.

So, we are currently in Late Stage ALS. We got here very quickly. There’s only one stage after this one … End Stage. And we all know what that means. Late Stage ALS looks like this:

Minke is unable to walk and requires his wheelchair whenever he is out of his hospital bed.

He requires assistance in reaching for objects, feeding himself, going to the bathroom, and doing any sort of communication using technology. So he needs Molly or me to type his texts and emails, and to push the buttons on his phone. He can still talk and chew and swallow, but once he gets the trach, he will have to take everything through the feeding tube and will need to use Eye Gaze Technology to communicate.

So … these are our current circumstances. I hate it, in case any of you were in doubt. My body is on fire every day with the chronic pain of stress, arthritis, and sleep deprivation. There are always a million things to do and keep track of and appointments to make and people to talk to and emails to write and I hate it. I hate all of it. I want my life back to the way it was. But like I said, this ain’t no fairy tale and there’s nothing I can do about it. I just need to carve out the moments when I can hug and kiss my Minke. Where we can watch a show together and laugh. Where we can share our love for Mrs. Zelda Goldfarb and feel gratitude for having the time that we have. It’s all I can do. But I’m not very good at it. Because I’m grieving even while he’s here and I don’t know how to stop that. I don’t know how to enjoy what I have right now at this moment. I’m trying. But I don’t know how.

Below is one of our favorite songs, for your listening pleasure! Enjoy!

DELIRIUM … and then some

Minke’s in the hospital. I have told this story what feels like a million times and now I’m finally writing it down. I’ll skimp on some details because I’m tired. I’m writing this on Monday morning at 3 AM.

Minke started acting odd on Thursday afternoon during the informative Pre-Trach surgery Zoom meeting. He was agitated and started yelling. Then we ended the meeting and he was in a full-blown panic attack. Nothing odd about that; I have panic attacks daily. 

But Thursday evening, he wouldn’t stop talking. He was wired. Hyper. He wasn’t acting like Minke. His chatter was constant. Nonstop, and some of what he was saying was nonsensical. Some things made perfect sense. But he didn’t sleep at all. Neither did I. 

On Friday, his nurse came and I told him what was going on. He agreed that Minke wasn’t himself. He had a low-grade fever and I said I thought it might be a UTI. I know UTIs can cause a change in behavior. The nurse was going to have a doctor order labs and he would get back to me to get a sample. But I never heard back. 

Friday night felt the most surreal. He was laughing and saying things that made me laugh but he was talking in riddles. In circles. I videotaped him and sent the videos to my siblings and to his. For verification, I guess. They agreed. There was definitely something wrong. Minke was wired. Manic. Not sleeping, only constant blathering.

I tried calming him down, massaged his head, and played soothing music, to no avail. He just kept chattering away. He seemed like he was on acid. Having epiphanies. Contradicting himself then cracking himself up. He was definitely experiencing some sort of euphoria. But to me, it was so disconcerting. 

Saturday morning I called his health team. Call 911 they said. So I did. He was very amusing to the EMTs, but when the time came to put him in the ambulance, he was yelling at them saying they were kidnapping him and he was going to sue! I felt sick to my stomach.

In the ER, he seemed to spiral further. But all tests came back normal. His stats were great. Blood pressure perfect. Pulse perfect. No fever. No pain. But his pupils were as big as basketballs!! 

Crazy eyes!!

I had to leave and go take care of Zelda. He got mad at me for leaving without him and my heart broke. I was planning to come back after feeding and walking my girl, but the doc called and said I would be a better advocate for Minke if I recharged my own battery. I was terribly sleep-deprived too. They were admitting him. He was in a safe place where he would get the best care. I agreed with the doc. Hung up the phone and had one of the most gut-wrenching sobs of my life. 

I woke up Zelda who was snoozing in the living room and got her to come into bed with me. I needed her. We laid in my bed butt-to-butt and her presence and snoring were soothing. I had uneven sleep. 

Sunday morning I spoke with the nurse who said he had a good night. He calmed down. Became more lucid after moving upstairs to his room. He seemed to have a much-needed good night’s sleep. I was flooded with relief. But just as quickly, that relief vanished when the doctor called a little later in the morning. Minke was having severe pain in his lower abdomen. His pain was at a 10, the doctor said. They gave him an antibiotic and some Ativan to calm him down and soothe the pain. It worked.

But the doc was saying this case was a real head-scratcher. She couldn’t find any cause for the pain. She’s been consulting with neurology. And they plan on giving him a full workup of tests.

I went to see him and he seemed surprised, but he was back. He was my Minke again. He thought he remembered everything that had happened, but when I told him what I had seen, he couldn’t recall any of it. He was jittery, couldn’t eat, constipated, but no longer agitated. I thought my presence would calm him. I guess I think too highly of myself, because I don’t think my being there helped him feel better at all.

I did the only thing I know how to do. I brought him treats. See’s chocolates and Jolly Ranchers and Trader Joe’s Raspberry Heart shortbread cookies. Food will solve everything, won’t it? Of course, he couldn’t eat. Wouldn’t eat. While I was there, the doctor came in and spoke to both of us about the course of treatment. He would stay at least another night. Neurology wanted to do an EEG and check his brain. They ordered an MRI. This doc is amazing and extremely thorough and seems bound and determined to find the cause of all of this.

Was it ALS related? Something else? They ruled out a stroke, thank goodness, and from the tests they took, there was no bleeding in the brain. Everything looked good. Except Minke was feeling terrible.

My heart continues to break with each progression of this disease. I’m losing him a little more every day. There will be no happy ending to this story. When this journey is over, my heart will be shattered. I don’t know how I’m still standing.

Exactly ten years ago today, we met for the first time. We knew fairly early that we were meant to be together. B’Shart. Ten years. It feels like yesterday.

July 4, 2013—B’Shart

The Trach Discussion

Yup! We are there. To trach or not to trach, that is the question. I could have gone my whole life without ever talking or thinking about this. But let’s face it, my life has been hijacked by ALS and this is the topic of conversation these days. So, here we are.

First, for those of you that don’t know what the heck I’m talking about, a trach (tracheostomy) is an invasive surgery that creates a hole (!) in the windpipe where a ventilator tube is placed.

Minke’s pulmonary function is declining and declining rapidly. They told him that if he goes below 50 percent, the urgency for the tracheostomy becomes imperative. In December, Minke’s pulmonary function was at 75 percent. In March, he dropped to 65 percent. That’s a BIG drop in a short amount of time. Hence, the conversation.

Plenty of people with ALS (PALS) decide not to get the trach. There are also plenty of people who decide against the feeding tube as well. It’s an individual and personal decision. Some people decide to have, “no holes” in their ALS journey.

But, in deciding to get the trach, the PALS needs to accept that they are putting additional and tremendous responsibility on their caregiver.

Having a trach requires care 24/7. Molly and I would have to be extensively trained on the care of the trach BEFORE Minke comes home from the hospital. They ask the spouse to spend 24 hours with their PALS while they are still in the hospital, so the spouse can be trained under the supervision of a respiratory therapist. Once Minke comes home from the hospital, Molly and I will need to care for the trach site round the clock, maintain and clean all the supplies, tubes, hoses, ventilator, and cough-assist machine, as well as suction secretions from the airway multiple times an hour. Did I say STRESSFUL?

However, having a trach can also extend one’s life anywhere from 2 1/2 to 5 years. So … why are we even having this discussion?

Because I am petrified.

Will I be able to do it? To step up? Will I be able to handle/manage the quality of care Minke will need? I’m already finding everything about this caregiving stuff overwhelming. Now, we are adding more to the mix. I fear I will lose my already lost mind.

I’ve been doing a deep dive into researching everything I need to know about this surgery. I’ve been asking my fellow ALS spouse caregivers to share their experiences. One of my fellow caregivers did a video chat with Minke and me the other morning. Her husband is a Vet with ALS. He was diagnosed in 2015. In 2018, his pulmonary function went down to 20 percent and he went into respiratory failure! They found themselves in an emergency situation and so, to save his life, her husband had a tracheostomy. That was in 2018. Now it’s 2023 and he is still very much with us. A pretty powerful testimony for getting one, don’t you think?

But … but … but …

But with the type of care it requires, I can just forget about having any kind of life, right? I already don’t have much of one. I don’t do anything but stay home and care for Minke and Zelda and occasionally the highlight of my day is getting out of the house to grocery shop.

I can forget about having any kind of career. My writing has already been put on the way-back burner and I can’t possibly keep up with any other type of work while being a full-time caregiver.

So, I can forget about everything and just do whatever it takes to keep Minke with me for as long as possible. As long as that’s what he wants. And Minke wants the trach. To refuse him, to say that we are not on the same page, and flat-out refuse to be here if he gets one … well that’s just plain selfishness. And remember, I told him I would catch a grenade for him. And now, one more grenade has been tossed at me.

I’m gonna catch it.

Good Days & Bad Days = Whiplash

In the two weeks since the ER debacle, things have calmed down as much as they can calm down. We canceled all appointments for the days following the 13-hour ER stay. And though we never received a precise reason why Minke was having pain and pressure in his chest and abdomen, we self-diagnosed (as one does in the 21st century) and decided it was Minke’s latest ALS medication that was the culprit. The drug is still new; only approved last September, and Minke seems to think they may have rushed it through for FDA approval. Possibly. The side effects of the medication are definitely GI-related. So, Minke has stopped taking it. He is seeing his neurologist today, so we’ll wait to see what he says.

Everything about this disease is a waiting game. And no two patients are the same, so we are in a constant state of not-knowing. It can be torture at times. The not-knowing. I am a Need-to-know-type of person, dammit!

I mentioned in my last post about the Overhead Lift versus the Hoyer Lift. If you need reminding of what a Hoyer Lift is, go here for the post that shows the video of this horrific machine!

The Overhead Lift is a game changer. I don’t have to try to lift Minke up, or roll him side-to-side, or knock myself out trying to fit the Hoyer into places it will not go. The guy who installed our overhead was amazing. His father had ALS, and he wanted to find a way for his father to live more comfortably. He came up with this design and it is brilliant! Have a look:

This is me trying it out. OMG! It was so much fun! I think we could make some additional income by having people come over and take rides in the overhead!

In a much more detailed video, here is Minke in the new overhead lift!

So much better, isn’t it? I’m actually able to do this machine. I feel better about my skills as a caregiver and Minke feels safer with me as his caregiver. Big Plus!

Some days when Minke has good energy and we are laughing and joking around with Molly and Zelda, things feel almost normal. Almost. But just as quickly, the next day can bring searing depression, bouts of constipation, low energy, and feelings of hopelessness. It can go back and forth like this from one day to the next. It’s very hard to keep the status quo around here.

The never-ending parade of people continues to trample through my house. There’s nothing left for me to do but accept it. And I also need to accept that my living room looks like a hospital room. That Minke is taking his shits on a commode in the living room, which, because of our open floor plan is extremely close to our kitchen. (sorry, my Love … just trying to keep things real for the readers) Ewwww! I know. But what can we do? Pretend we’re camping? Ha!

The bathroom remodel is STILL pending. We’ve been waiting 8 months (since before Minke even needed the remodel) to remodel our bathroom to include a walk-in shower and a doorway wide enough to accommodate his power chair. A wet room they call it. It’s not happening. Don’t know if it will ever happen, and Minke has all but given up. So, the commode in the living room is how we’re dealing with it. Molly is a champ at getting him on that thing. I’m pretty good; not as good as Molly or Minke’s son, but they are both much taller than me and have a longer reach. It’s very difficult to be height-challenged when having to caregive. What can I say? I’m a shortie. Always have been, and as I continue to shrink, always will be! Harumph!

What I’m really good at … and Minke is going to kill me for writing this … but what I’m really good at, is the wiping of the buttocks! I am very thorough. I want Minke’s butt to be spotless! This will be my claim to fame. Oh, lucky, lucky me!

Poop! There it is …

Yesterday was a good day. Minke went on a walk with me and Zelda and Molly. He went out into the garage for a little while to paint. And though this creates its own challenges as he adapts to what he is physically capable of doing, he’s doing it. It brings him joy. That’s all I want for him.

As for me, I just continue to try and steer this ship. I get off-course a lot. There’s a lot to manage daily. All I can do is all I can do, and I’m doing the best I can. Never been here before, never want to be here again. So, the day-to-day can certainly cause whiplash. I thrash around a lot. I’m reactive, not responsive most of the time. But I’m learning. And here it is … another day … what will this day bring? I never know.

March 27, 2023

And then THIS happened …

13 hours in this charming abode!

I am continuously exhausted. Even with Molly’s help, the tasks never end. Molly is amazing, but the reality is she’s only with us about 5 hours a day, which leaves just me to do the other 19 hours by myself.

On the weekend, Minke’s son comes over to help, but he’s not here for very long. I appreciate his help as well as everything Molly does, but the fact is the burden of all of it is on me.

This past weekend was hard on me physically, so by early evening on Monday, all I wanted to do was lie down. Minke was in an extremely upbeat mood. I hadn’t seen him like that in a long time. And I could barely stand up, but I didn’t want to miss this burst of energy he was having. So I stayed with him a little longer and then a little longer and we had a wonderful conversation, but then I just couldn’t keep my eyes open. It was only 7:30 pm, but I went to bed.

I typically leave my phone on, but as I was falling asleep, my texts kept dinging. I looked every time to see if it was Minke; it wasn’t, so I muted my phone.

I woke up to the sound of Minke’s voice. Minke was in his hospital bed in the living room, and I was in the bedroom. As soon as I heard his voice I picked up my phone and saw he had called me about 7 minutes before. I ran into the living room.

Minke was on the phone talking to 911. He was slurring and hard to understand. He said his chest and abdomen felt tight. He said he was going to pass out. I kept calling his name to make sure he stayed conscious and I took the phone and talked to the operator who continually asked questions and said, “they’re on their way.” She stayed with me on the phone until the EMTs arrived.

They ruled out a heart attack, saying his EKG looked great, but they took him anyway. I asked which ER and as they left, I found myself sitting on the edge of the couch, soothing Zelda and feeling completely numb. I felt paralyzed. I couldn’t think. Or move. Or breathe. I just felt blank.

Finally, I went inside to get dressed and I called Molly. I don’t know why I called her, but she’s become my right arm, and it seemed like the right thing to do. After I told her what happened, she said she was already in the car and on her way to pick me up. I still wasn’t registering what was happening.

When we arrived at the ER, Minke was moaning in pain, the doctor was there doing an ultrasound, and the nurse was getting ready to insert the IV. No problems with the IV this time, thank the Universe. They took blood, and they brought out the big gun drugs! Dilaudid! Yowza! That’s the stuff! I told Minke to hang on … he would be floating in no time.

As the drug took hold, Minke started cracking jokes. Bad puns are his favorite. Molly was laughing and I was shaking my head in disbelief. The nurses were laughing and I felt like I was stuck in some strange alternate universe or some 1980s hospital sitcom. It was all so incredibly surreal.

Minke was talking nonstop, and for those of you who know him, this is so uncharacteristic. His throat was getting raw and dry and he sounded like some Mafioso gangster. He kept saying this was all bullshit because they were going to wind up sending him home without knowing what was happening to him. He was funny, but he was also scaring me. He was angry. I can’t say I blame him. Thank goodness his pain was under control. But what he was saying turned out to be absolutely true.

Minke said to me, “take my picture! Use it for your blog.” So I did. And here it is. Minke cracking up Molly with his crazy puns and a nonstop diatribe about incompetent doctors and emergency rooms. I told you it was weird.

At some point, they took Minke for a CT scan. At 2 AM, the doc came back in. Blood work—normal. CT—normal. There were no signs of kidney stones or liver or gallbladder problems. No signs of appendicitis. It did show a distended bladder, and Minke said he’s been feeling bloated ever since the feeding tube insertion. The site of the incision for the feeding tube was fine. But was this the fault of the feeding tube???

So now what? The doctor said he didn’t think Minke was in danger, but wanted to keep him a little longer to rule out anything else.

At 3 AM, I could barely keep my head up. And I had Zelda to think about, and Molly, who kept saying she was fine, but did she ever expect THIS to be part of the job? I told Minke I needed to go home. I needed sleep; I could no longer function. He was agreeable, and I wanted him to stop talking and try to get some rest. I gave them my phone number, said I was THE WIFE and told them to call me when he was ready to be released.

Did I feel like a terrible spouse for abandoning him? You bet I did! But what about Zelda? She needed me too. She’s got severe separation anxiety and she was pretty freaked out when the EMTs came and took her dad, and then I left too. That little face in the window just about broke my heart.

And what about me? I couldn’t even walk straight. So Molly took me home.

Did I sleep? No. Did I eat? No. The first thing I did was take Zelda out. She greeted me like I had been gone a year. The house felt weirdly quiet and the empty hospital bed made me sob uncontrollably. I laid down on my own bed and Zelda cuddled next to me. A calming force, for sure. I fell asleep for about an hour.

At 6 AM, I called the hospital. They said they were waiting for medical transport for Minke, and Minke told them not to call me because he wanted me to get rest. Can you believe that? He’s having this excruciating night, and he’s still taking care of me. Unbelievable.

Two hours later when Minke still hadn’t shown up at home, I called again. They said he was waiting for a ride!!! Can you believe this? Holy shit. I could have gone and picked him up at 6 but thought he’d be home any minute. I felt sick to my stomach. I told them I was on my way.

I had to maneuver his power wheelchair into the van and then I sped to the ER as fast as possible. Isn’t it funny that when you go to a hospital there are a million handicapped spots, but they’re all taken? I parked illegally. Got into that power chair and whizzed on over to the ER. They let me go right in this time without having to walk through the security scanner. They did ask me if I had any weapons. Damn! I forgot to bring my hunting knife!

Minke was awake and sitting up. Startled to see me. He had been discharged 5 hours before, but no one came in to check on him or tell him what was up. He had to pee. He had no call button. He was treated like shit. Again. By our wonderful healthcare industry. When I rolled on in he said, “they forgot about me. For five hours!”

I don’t even know what to say anymore. It seems when we tell people Minke has ALS they look at us as if we’re from another planet. INCLUDING HEALTHCARE WORKERS. I cannot understand this. I will never understand this. It truly makes me want to puke.

We finally got home by 10:30 Tuesday morning. With Molly’s help the night before, we managed to cancel 3 of the 4 appointments that were scheduled that day. But when Minke phoned the 4th appointment person, he insisted he was more than 1/2 way to our house and he would come anyway. After being told Minke had spent the night in the ER, HE WAS COMING ANYWAY!!!!! What is wrong with people?

So, another surreal moment … Minke, in a hospital gown, sitting on the commode in the middle of our living room, and this guy comes in and wants to install something in our bathroom that we needed 6 months ago. We no longer need it because Minke can no longer stand or be able to use it, and this guy proceeds to talk and talk and talk about how he can help us. He’s very handy, blah, blah, blah, make changes here and there, and it will be so much better than what we have and SHUT THE FUCK UP AND GET OUT OF MY HOUSE!

When Minke, being quite polite in front of this dude, asked me what I thought, I told them both exactly what I thought. “With all due respect, sir, I’ve been up all night. I’m not operating on all cylinders and I cannot think about this right now. We both need sleep. And privacy. And we will let you know.”

The guy said he understood, and after thanking Minke for his service he left. And we were alone. Finally. Just the 3 of us.

I got Minke back into bed (I haven’t told you yet about the overhead lift versus the Hoyer lift—it’s a game changer and a lifesaver. I’ll tell you next post.) I did a little clean-up, took my pup for yet another walk, and then, FINALLY, to bed. I slept about 2 hours before Zelda woke me up to go out again.

My friends, my ass is draggin’! I am no spring chicken, and this life … this so-called life is aging me faster than a 1970s Polaroid picture in the sun!!

Don’t think you have all the answers by telling me I need to get a dog walker. We’ve tried it before; a couple of times. Zelda will not have it. My friend Nancy told me to think of rescue dogs as special-needs children. Zelda definitely has special needs. I wouldn’t give her up for a zillion dollars, but there are times she can be difficult and exhausting.

Minke also has special needs. So here I am, in the third act of my life, caring for the most special creatures I have ever known. I have lost myself along the way somehow. But maybe that’s the point. I’ve been focused on myself for far too long; now it’s time to give to those who need me most. Minke and Zelda. They are the loves of my life. But I am bone-tired. And that’s just the way it’s got to be.

The Feeding Tube Extravaganza

Look at me!! Doing medical stuff! Never in a million years, did I think I was capable of this sort of thing!

What a week this has been! Please read that with thick sarcasm in your voice.

To start, Minke was scheduled to have a feeding tube inserted into his stomach on Monday. This is actually typical for ALS patients, and it’s also a good thing. Because … Minke lost A LOT of weight in the past 6 months and was not getting enough calories from eating food. The weight loss is obviously all muscle, but the result caused him to have extremely low energy. The doctor said he was malnourished, so we knew this day was coming.

For now, while Minke is still able to eat, the feeding tube will provide additional nourishment and calories. We can also put some of his icky-tasting medications in there so he no longer has to deal with swallowing those nasty pills. Not all of the meds can be crushed to go in the tube, but enough of them can be crushed, so it will make a difference. He will be getting a fiber-filled formula, not unlike the Ensure beverage that some of you may know about.

So … Monday was a total bust. They were short one doctor; the room where this procedure was to take place was occupied by someone whose procedure was taking longer than usual. His appointment was for 9:30 AM, and by 1 PM, he still hadn’t gone in.

Additionally, the bonehead who was putting in the IV took nearly an hour to do it with multiple pokes. Shrinking and disappearing veins are also typical traits of ALS. Doncha’ just love, love, love this fucking disease?

Anyway, Minke came home on Monday after an exhausting day of emotional and physical exertion. Thankfully, he slept like a baby that night. Tuesday, we laid low. And Wednesday, we were due back at the hospital by 6:30 AM.

I walked in there on Wednesday morning, ready for a fight. I didn’t need to be, thankfully. All went very smoothly. The nurse we had was EXCEPTIONAL! I love her. Also named Molly. What is it about these nurturing Mollys in my life now? I’ll take it. Molly was my paternal grandmother’s name. Never met her. But I’m meeting some amazing Mollys now!

AMAZING Nurse Molly!!!

Molly used an ultrasound to spot the vein for Minke’s IV. I watched the ultrasound and it was absolutely fascinating. Molly was a great teacher, and it turns out she’s the nursing trainer for outpatient surgery. She took her time, showed me on the ultrasound screen which vein she was going to go for, and lo and behold, with one poke and no pain, the IV was in. Minke and I breathed a collective sigh of relief.

The procedure went well; shorter than expected, and caretaker Molly and I went back to the hospital after the procedure to be educated on nutrition and, of course, how to use the feeding tube.

I was (and still am) nervous. There is a hole in Minke’s stomach. It cannot get wet. It cannot get infected. It CANNOT get any stomach acid on the skin!!! But Nurse Molly was a wonderful instructor, and as she taught me how to do things, Caretaker Molly videotaped all of it so I will have a constant reference.

I am reassured that once we get through the healing process, the use of the feeding tube will become routine, and one more thing we need to do to keep Minke healthy and with us for as long as possible.

This morning, DAY 1, Caregiver Molly and I worked together with what we’ve been taught, to have a somewhat successful first day; using the syringe and the feeding bag and flushing the tube and all the stuff we have to do. I flushed the tube a little too quickly, which caused it to leak. I panicked, of course, but I called my friend and neighbor Michele, who used to be an RN, and she, in turn, called her friend, Jamie, an RN, and we FaceTimed with Jamie, and successfully cleaned, dried, and redressed the wound. PHEW!!! I was not made for this medical stuff. There’s a reason why I was a theatre major! But here we are …

Minke resting comfortably. Or as comfortably as possible with a hole in his stomach. Feeding bag with formula in background.

And all during the craziness this morning, my poor darling Zelda had to be continually taken out for walks because she has diarrhea. Caregiving never ends. My poor baby girl. We went to the vet this afternoon, and we got some medication, and they are testing her for heartworm and other possible parasites.

I lost my shit at the vet. Started crying. It’s been so much, and the thought of anything happening to Zelda on top of everything happening with Minke was just too, too much.

The vet was wonderful. Empathetic. She said if Zelda does test positive for Heartworm, they will put her on medication immediately and she should be good to go. For now, she’s taking an anti-inflammatory and antibiotic to help with the diarrhea. I’m hoping she’ll be able to sleep through the night without having to go out repeatedly. I hope that for my sake and for hers. Right now, she’s sleeping and seems cozy and tucked in for the night. I love her so much. I hope she feels better tomorrow.

My sweet girl.

And finally, through all the emotional highs and lows of the day, was my loyal and patient rock; our caregiver, Molly. She is amazing, calming, steady, and keeps me from completely losing my mind. We are so grateful to her for going through all of this with us.

Amazingly, three of my playwriting colleagues decided to start a GoFundMe Campaign to help us keep Molly on as our caregiver. They launched the campaign today on Facebook, and I am overwhelmed with the support they have offered, as well as others who are responding to the call. I’m not good at asking for help, but there’s no way I can do this work alone.

And it’s often been said, to caregive for someone with any terminal illness, much less the beast that is ALS takes a Village. I never thought I had a village. Today, it seems, I do. In the worst of times, I find myself blessed.

If you would like to donate to the GoFundMe Campaign to help us pay Molly for her services, you can click here.

So grateful to my wonderful Molly!!

Caregiving is not for Sissies: PART II

This is who we want for a caregiver!! Is that too much to ask?

Okay, so where did we leave off? A crappy caregiver who seemed sketchy and didn’t know how to cook eggs or flush a toilet. Yeah. No. Goodbye! She wound up calling in sick for her last day anyway, so we definitely made the right decision!

I notified the agency to tell them things weren’t working out with this woman. I wasn’t mean about it; I just said it wasn’t a good fit. Of course, agencies loving their paperwork as they do, asked me a billion questions regarding this particular caregiver, and what my “ideal” caregiver would look like to me.

I said I needed someone strong, empathetic, and kind. Someone who preferably had experience working with an ALS patient. Someone who was a self-starter and saw things that needed to be done and did them without having to ask. Light cooking skills. Light housekeeping skills. And basically, the person I was looking for was Mary Poppins! Hahaha!

The woman from the agency said, “well … um … it might be a little while before I can make that match.” I said, “fine. I just want the perfect person. Take your time.”

But the problem is we didn’t have time. Minke’s disease is progressing, and he’s losing strength. So he can no longer contribute to helping in any way to make those transfers, mainly out of his wheelchair and onto a commode or toilet.

Last week, I had to use the Hoyer Lift (now come to be termed the Horror Lift) and I did manage to get Minke back in bed, but he never made it to the bathroom. The next day, I got him to the bathroom, and onto the toilet, but I couldn’t get him back in the chair. I had to call 911, and Todd, the fireman, and his crew, who have been here multiple times, came over to save the day. They know us now. We’re regulars.

So, along with dealing with Minke’s limitations, we are now dealing with mine. Let’s face it; I’m an old lady. Not in the best shape. My arthritis has been progressing over the last couple of years and it’s getting worse as we speak. And I have no strength. I think the fact that I was able to lift Minke at all up until now, was sheer will. But my body is broken, and I can’t do it anymore.

Enter Molly …

We knew Molly when we lived at our other house. I used to order CBD balm from a local company which worked wonders for my arthritis. Sometimes, I could pick up the balm at a local dispensary, but mostly I would order it from their website. Molly used to work for this company and one time, after receiving my order, she said she was going to be in my neighborhood and could drop off the product. Cool!

This stuff is AMAZING!!!

And that’s how I met Molly. Who, from the moment I met her, I loved her. It’s hard not to. She’s sunshine on a blue-sky day personified.

When Molly let me know she was leaving her job at the company, I was sad I wouldn’t see her anymore. But I still used the product. To this day, I use their product. This is not a commercial for Rescue Rub, I just really love how much it soothes me.

And then, sort of randomly, about a month ago, I got a text from Molly. She said she was in my neighborhood and asked how we were doing. Molly knew Minke had ALS, but the last time she saw him, he was still walking and being his good ol’-self.

I wrote back and told her we had moved. That Minke’s ALS had progressed dramatically and I was on the verge of losing my mind as his sole caregiver. She asked if there was anything she could do. I love this woman! As a matter of fact, I could use help chauffering Minke to the VA for a couple of appointments. Did she happen to have any experience with a wheelchair van?

And VOILA! Turns out Molly was a caregiver for a small boy with cerebral palsy for five years. She did, indeed, drive a wheelchair van. I was astounded! Would she be available to take Minke to his appointments? YES!

Molly drove Minke to two appointments that week. But the notable thing here is that there was a bit of an issue at one of the appointments. (Too long and boring to go into, but the fact is, Molly advocated for Minke, got angry at the assholes on Minke’s behalf, and displayed this Mama Bear protective mentality, that up until now, I felt I was the only one who possessed this in regard to Minke’s health.

Minke and I discussed and we knew we needed to ask Molly if she was interested and available in working for us. The timing was right, the goddesses were smiling down upon us, and we did, in fact, manifest our own Mary Poppins. Now known as Molly Poppins!

Molly Poppins! Of course she has a photo of herself in this costume!!!

Molly worked for us this entire week, and I don’t know how I lived without her. She’s practically perfect in every way. There’s just one glitch. Of course there is. Nothing is easy!

The aforementioned Caregiving Agency was paying the caregivers they sent to us. But they send shitty caregivers. So, do we accept shitty caregivers into our home to take care of my precious Minke, or do we fork out the dough from our own pockets, and get the very best? No brainer, right? We are trying to find ways to get Molly a stipend or to get her hired by the agency to just work for us, but we’ve been running into some roadblocks.

Regardless, I’m bound and determined to find a way to make it work. Minke trusts Molly. Molly is super strong, super smart, and has masseuse training, and she is always laughing. Zelda loves her, I love her, and she makes fabulous eggs! There is no discussion here. We are keeping her. Forever. And if anyone has any great suggestions on how we can continue to pay for her services, please let me know in the comments. I’ve put a lot of messages out to a lot of different places, and hope something will come through. But in the meantime, we have an exceptional caregiver who has definitely become part of our family. And I couldn’t be more grateful!

Our beautiful Molly! She’s one of the good ones!! ❤❤

Coming up: New medical equipment, overhead lifts, and feeding tubes. I’ll try to make it fun for you.

Caregiving is not for Sissies: PART I

I’m a sissy. I’m a weak, privileged little bitch who doesn’t like icky things!

Too bad, sweetheart! Caregiving is icky. Caregiving is physically strenuous. Caregiving requires patience. Kindness. Patience. Empathy. PATIENCE. Skill.

I’ve discovered I have none of these things.

I used to kiddingly sing to Minke the lyrics from the Bruno Mars Song that goes, “I would catch a grenade for you …”

Well, the Universe decided to see if that were true and here I am. Holding this grenade, this bomb, the bomb that will go off intermittently and reignite over and over. Its ticking mocks me. This explosive little pellet known as ALS!

This past weekend was R O U G H! Minke’s losing strength. I’m losing strength. I’m no longer able to lift him. I never believed I could lift him in the first place, but I was doing the lifts and the transfers from bed to wheelchair, wheelchair to toilet, and back again. Can’t do it anymore, because Minke no longer has the strength to hold himself up at all.

This past weekend tested every bit of mental and physical strength I had, and it was a big, fat fail.

To lift Minke, there’s a nifty piece of equipment called a Hoyer Lift. I’ve been trained on the lift multiple times by Minke’s physical therapist. And practicing with the physical therapist in the room is one thing. Using it by myself in a crisis situation is a totally different story. I’ve had to use it a few times now when Minke has either fallen or if I had to put him on the floor because he was about to fall.

Now, let me tell you something about the Hoyer. This piece of equipment causes me to panic. And I’m talking, about heart palpitations, sweating, nausea, and the need to FLEE! Watch the short video below to see what a Hoyer Lift is. This is only 1 video in six of my training. You’ll get an idea of what I’m dealing with if you don’t know what it is. It’s very … intense.

So, here’s the story of obtaining a caregiver. Caregivers, as we have come to find out are scarce. GOOD caregivers are extremely rare. We were put on an agency waiting list through the VA and we waited about 6 months.

Three weeks ago the agency called to tell us we would get two caregivers for the following week. One for Mondays, and Fridays, and one for Tuesdays, Wednesdays, and Thursdays. Okay. Here we go. A stranger will be entering my house and will be privy to our private and personal life. How fun!

On the following Monday, the agency called at 7 AM to tell us the caregiver had called in sick. Wow! Off to a great start. On Tuesday, the second caregiver showed up promptly at 8 AM. I was encouraged. But in the four days she was with us, she turned out to be a no-go!

Minke politely called her “odd.” I used some other words for her which I will not repeat here. Oh, and she had never used a Hoyer Lift before. Nor had she ever cared for someone with ALS. I came to doubt that she had any caregiving experience at all.

She didn’t know how to flush a toilet. Our toilet is a normal toilet with a handle like every other toilet I’ve flushed every day of my life. She didn’t know where the handle was. Really?

She couldn’t remember things 30 seconds after we told her. She asked Minke if he wanted breakfast. “yes, please,” says Minke. “May I have some eggs and toast?” She says, “how do you want your eggs?” Minke says, “scrambled is fine.” She takes two steps, turns around, and says, “how did you want your eggs? Minke repeats, “scrambled, please.” She takes two steps, turns around and says, “did you want toast?” “Yes,” says Minke. She takes two steps, turns around and says, “how did you want those eggs again?” Minke, ever-patient repeats for the third time, “scrambled.”

As she heads to the kitchen, Minke hears her utter under her breath, “I’ll just make ‘em like I make ‘em.” Great attitude, crappy caregiver.

So … guess what he got? Scrambled? No. Over-easy? No. Raw? You got it! She gave him sunny-side-up eggs that were not cooked. Runny is one thing, but these were RAW!!! The whites were still liquid. This is when I knew she needed to be gone the next day!

I will not continue to list all the other things she got wrong. All we knew is she was not trustworthy and she didn’t listen to us or our needs, and we wanted her gone. Compared to some of the other horror stories I’ve heard from my fellow ALS spouse caretakers, we got off easy. But yeah, we fired her!

To be continued … PART II tomorrow!

Do You Wanna Dance?

I don’t want this blog to be a total bummer. Our circumstance is awful, but neither of us wants to fall apart and be a puddle on the floor. Not every day anyway. There is still so much love in this house, and we honor that and are grateful for it.

Zelda. She makes us both laugh every day. She clearly knows something is up, but she doesn’t understand why Dad isn’t sleeping in our bed anymore. She just knows he’s in some crazy contraption in the living room. She’s curious about it. She misses snuggling. But we make that happen as much as possible.

When Zelda is up on the couch, Minke can cruise alongside in his power chair and reach her to give her some lovin’ and get to touch her fur and rub her ears. And he needs that just as much as she does! It’s a beautiful sight, those two. The video below is a little ritual we used to do with Zeldie at bedtime. She always knew her cue. This was back in the old house when we all slept together like the cool pack of wolves we are!

We did that with her every night for years. Now, she’ll sleep in her bed in the living room or on the couch to be near Minke. Or sometimes, she’ll come into the bedroom and hop on up to sleep with me. I love when she sleeps with me. Her snoring is soothing, and I miss sharing the bed with both of them. Minke and Zelda would often snore in sync. It was truly music to my ears.

The other thing I miss is dancing with Minke. Just randomly. We did it often and impulsively. Slow dancing in the kitchen. Or the living room. Or anywhere, really. Minke’s a good dancer. We still dance. Only he’s in his wheelchair. But we still sway to the music together. Nothing is going to stop us from doing that.

Dancing in the kitchen at the old house. 2017.

Chronic Sorrow

Our wedding day. July 25, 2015. The future looked so bright.

“Chronic Sorrow: A natural grief reaction to losses that are not final but continue to be present in the life of the griever.

Chronic sorrow is not about endings; it is about living with unremovable loss and problems that cannot be fixed.

It is due to a series of losses requiring energy and courage to cope with crises and make the adaptions necessary to live a life of one’s own choosing. This process is about finding a way forward in the face of a series of losses.”

I don’t know to who to attribute this quote too, but I found it somewhere in my meanderings. It describes my current mindset perfectly.

January 18, 2023

ALS: The Firebreathing Dragon

September 2021 The Debinkefarb Clan. Debbie, Minke & Mrs. Zelda Goldfarb

From the moment we received Minke’s diagnosis, it felt like we boarded a runaway train. And once we got onboard, there was no way of stopping it.

The infuriating thing about this disease is that no two patients are alike. Furthermore, it is always changing. In the beginning, Minke felt fatigued and weak. Okay. We adapted to that. Then he needed to use a cane. Then a walker. Then he kept falling with the walker and I was petrified to leave him alone, even if just to walk Zelda or go to the bathroom. In one month, Minke was taken to the ER 3 times. All for concussions. I can’t tell you how many times my heart has stopped since this train began.

Minke is now full-time in a power wheelchair. He can no longer walk. He can no longer dress himself. Or bathe. Or shower. He finds it difficult to hold things. Pick things up. He can still eat on his own, but sometimes he needs me to put the food in his mouth. He sleeps in a hospital bed. In another room from me. Has all this changed our relationship? You betcha.

The physical state Minke is in now came about eventually. It wasn’t the way things started, it’s the way the disease progressed. So, with each progression, it takes some time to get used to. Every time there is a change, We both need time to process his limitations. Last week you could do this, but this week you can’t. And you’re never going to get that back.

So we are dealing with constant loss. When things are going relatively well, I hope with all my heart Minke stays in that place for a while.

But frankly, I can’t even remember how we got here. How we got to today. Everything is a blur. My life is a blur. I’m trying to live in the moment, but c’mon … we are always thinking, “well, we don’t need this piece of medical equipment yet, but we will … we will need it soon.”

And then, of course, the reality of where this journey eventually leads … and sometimes I push those thoughts away, but we have to prepare for it, don’t we?

It’s so surreal. So scary. So Goddamn sad. In my mind, we just met! We’re still so new. We only met 10 short years ago, way back in the before times. I want more time!!

ALS you fucking thief! You are robbing us of having a beautiful, long life together. Motherfucker!

How it all Began …

Minke & Zelda- July 4, 2021-right before Minke’s diagnosis.

Minke got COVID really early into the Pandemic. We locked down on March 13, 2020, and on April 5, 2020, Minke had the virus. He caught it at work from an idiot co-worker who didn’t understand boundaries.

Minke was quarantined in our basement, which he had set up like a bunker. Once an Eagle Scout, always an Eagle Scout. He had telehealth meetings with his doctor and did manage to get himself up to the Portland Expo Center to get tested.

It was still so very new and the person who did the test was young and scared and her lack of confidence showed. The test came back negative. Meanwhile, the symptoms of COVID continued, including a skyrocketing fever and hallucinations at night.

Minke refused to let me come down to the basement, and the fact that I couldn’t help him through the nights, the worst part of COVID, was agonizing to me. I would put food on a tray, put on my mask, open the door, and place the tray on the top step. We’d wave at each other. It was heartbreaking.

Three weeks later, Minke emerged from the basement. Gaunt and fatigued, he didn’t think he would have to return to work. But Intel considered their workers “essential,” and so back to the salt mines he went.

In my opinion, he was never the same after that bout with COVID. He never regained his energy. And eventually, he told me about the muscle twitches that had started while he was in the basement, and never stopped. Muscle twitches. We all get them. Annoying as hell. In your eye. In your calf. Twitch, twitch, twitch, and then it’s done.

Not so with Minke’s twitches. They were all over his body. Arms, legs, calves, thighs, eyes, stomach! Constant. Never stopping. I would hug him and I would feel them. Like some creature had entered his body and was using it for a playground. In fact, a creature had entered his body. A beast. A beast known as ALS.

It would be nearly 10 months later when he would receive an actual diagnosis. No doctor wants to give their patient the news they have a terminal illness. They had to rule everything else out first. But on August 27, 2021, the diagnosis was made.

ALS. Good luck, Minke Ceilidh. You have two to five years to live.

FUCK!!!!!