For about a year now, I have noticed that either I don’t really have dreams anymore or maybe it is more of I don’t remember my dreams. This is weird because I would have crazy, vivid dreams. In our pre-ALS lives, part of the getting ready for work routine would be spent telling the Big He about my dreams. It was in my dreams where I would work out my problems. Problems always seemed to solve themselves in my dreams. That doesn’t happen anymore. I am pretty sure it has something to do with the emotional and physical stress I live with these days along with the sleep deprivation that has become the norm with cargiving 24/7.
For what ever reason, this morning I was dreaming. It was amazing and I remember when the Big He woke me up because he needed suctioning, I had this feeling of happiness in my heart. When things calmed down with the Big He I tried so very hard to get back to that dream, because only in my dreams are the Big He and I that couple before ALS.
So what was the dream? I remember the moments just before I woke up and in those moments, Tom was laying in bed with a scratch on his forehead. As I stood over the bed I asked what happened. He didn’t know how the scratch got there. So, I climbed in bed and snuggled close and rested my head on his chest. It was pure and simple comfort and peace when my head hit his chest.
As I tried to get back to that dream, the words “only in my dreams” circled around my head. ALS has robbed me and the Big He of the life we knew. It is now in my dreams I find my way back to that place of familiarity and peace of our pre-ALS life. This post-ALS life has taken so much from us.
Have you heard of this term? As I was waking up this morning, this term came to mind as it relates to being a caregiver to my veteran husband. It is term I would keep in mind, as an environmental regulatory consultant, when reviewing proposed rules. One of the things I tried to identify when I read rules was that the proposed rules did not have any unintended consequences. That is, were the rules written to solve one issue but created another one that was never intended.
This morning, it dawned on me that veteran caregivers are in a sense, unintended consequences. Stay with me…when the Big He joined the Air Force he knew there were risks. When he deployed that Christmas in 1990 to Saudi in support of Desert Shield/Desert Storm, he knew there were risks. I knew there were risks. However, do you think the Veterans Health Administration would have ever thought about the consequences of the caregivers to those veterans? I often say, I do what I do because I love my husband, which is true, but as a caregiver, I bear the brunt of the result of my husband’s service. I am so proud of that service. I am proud of him, but there have been unintended consequences for me as a caregiver. My physical, mental and emotional health has suffered. It’s not something I or many of those caregivers I speak to like to talk about. Most of the time, we just do what needs to be done. We hope the promise by our government leaders and the VA to help care for the caregiver will be fulfilled.
So why did this term come to me this morning? For over a year I have been asking for additional help. Particularly help at night a few nights a week. As the primary caregiver to my now paralyzed, vent dependent ALS veteran husband, I am exhausted. Yes, some nights we get more than 4-5 hours of sleep, but it is not that good, restful sleep. I am always listening to the sound of alarms or that sound the Big He makes as he struggles to breathe because he needs suctioning. I have been denied night time help by two different programs at our local VA. The frustration factor is at an all time high. From my perspective, it as if the clinicians making these decisions are truly clueless to the needs of the veteran and their caregiver. Keeping in mind that these clinicians have probably not done patient care in some time. At our local VA, the hiding behind problems is common and it may be due to an old mindset that government officials have. It is a rare few that don’t see a problem, just a solution that has not been discovered yet. [disclosure: I was a state government employee for a few years so yes, just as in any profession, there are those that go to work to collect a check and those that go to work to make a difference].
I am working through these issues. Step by step, person by person. While there are times that yes, I get tired and throw my hands in the air and say, “I am done”. However, the next morning I wake up and try again. You see with unintended consequences, it doesn’t mean that’s it. It means you work through the problem, identify and eliminate the cause of the unintended consequence. This means, seeing the caregiver for their true worth and doing what needs to be done to ensure they have all the resources needed so we can keep our veterans with us healthy and strong for as long as possible at home where they belong.
April is the month we recognize children of those that serve in our military and in realty those that have served. Our Little He came in to our lives years after the Big He honorably discharged from the USAF. We never imagined that we would be thrust so actively into this community again. Our time in the military were stories we shared with our boy. Pictures we shared and fun souvenirs he could take to school.
Once we learned the Big He’s ALS diagnosis was connected to his military service and our connection to this community was re-established, our son has now seen first hand what being connected to the military community really means. Just as we learned when we were so young, the military takes care of their own. They watch out for you for one reason, you are family. The Big He’s brothers and sisters he served with have reconnected with us and have shown our son the same love and friendship they have for us.
Today I want to recognize our amazing man-child. He was only 13 when he learned his Dad had been diagnosed with a terminal disease. It was the day that would start his journey as a kid caregiver. I have to say kids are amazing and we don’t give them enough credit at times. As much as we want to protect our boy from the heartache this disease causes, I know it is this journey that will shape him into a man we could only dream he will become.
Our boy has become so much more empathetic which is not something you find in a tween and teen. His responsibilities are also more than the average teen. He assists with those things around the house that his dad once did. He assists with the daily hands on care of his dad. To some extent, care that most adults will never have to do. He does it with a smile and joke most days. His sense of humor has grown and he has learned to use humor to help cope with the sometimes embarrassing or awkward moments. His emotional intelligence is sharpening [more than some adults I know]. This trait will serve him well in the future. I hate he has to experience so much pain so early in life, but the man he is becoming because of this journey makes his mom and dad’s heart smile with pride. We know he will have the skills to handle whatever this life throws at him.
As the morning is starting, the dogs are ruff-housing on the floor and on my bed. The play seemed to change when the wrestling shifted to the Big He’s bed. Lou the service dog called a time out to get some one on one time with the Big He. Not to be left out, Remi also got herself some Big He cuddles.
Today, we mark one year since the Big He had his trach placed. In a month we mark 4 years living an ALS life. Had the Big He not chose to trach, the Little He and I would be approaching a different anniversary. The memories of watching him struggle to breathe and how weak and helpless he looked laying in that bed will forever be etched into my memory. The fear that I felt as I watched him was incredible. Night after night wondering if I would be leaving the hospital a widow. Overwhelmed with how I would tell the Little He. I am not sure how many people truly knew how I was barely holding on. I gave a brave face to the Big He and Little He and those around me, but at night when the ICU was as quiet as it could be with all the equipment and alarms, I would pray for comfort. I would pray for strength to hold it together one more day and I would pray for my husband.
His decision to trach was made because he was not ready to die. His decision to trach was because he loved us that much. His decision to trach has not been easy. The recovery from pneumonia was very, very hard. He experienced greater paralysis as a result of the insult to his body. Not gonna lie, this has been an incredibly hard year for our whole family. I can tell you that this year has also shown the Little He and I how much we are loved by the Big He. Not only has he fought hard physically to recover from the pneumonia he has fought mentally as well. He walked (figuratively of course) a very dark path for many months. Are those days behind us? Probably not, I mean with a terminal disease, with paralysis and with the need for life support there are a lot of dark days. The difference between now and then is that the Big He can see that there are bright days too. If we can focus on those days, I think we are doing pretty good.
He spends the majority of his time in bed, but I am hopeful that as we push into Bonus Year 2020, we will see more outings and making more memories. This past year has not been all of losses for him. He has gained 30 pounds, he started standing in a standing frame, he started coming off his ventilator for short times, and recently he has started to sit on the side of the bed and use his own muscles to hold him self steady. He has even begun to move forward and backward and side to side. Not bad for a guy that was supposed to be paralyzed. We will take every win we can get.
I hope you now see why this is our Bonus Year and I pray we have many more to come. If you are out and about this weekend or even staying home, raise a glass and celebrate our bonus year. Post your pictures and tag our Tom’s Troops Facebook or Twitter accounts and use the hashtag #bonusyear2019 so the Big He can see his Troops celebrating with him.
Caregivers are not perfect. They are not Superheroes (but we like to play them from time to time) or Angels (well maybe some of us but we slide back and forth between wings and horns). The millions of unpaid caregivers in the U.S. are just ordinary people doing what needs to be done for their loved one or friend. It is love that makes us do what we do. We make mistakes. We are not always on our “game”. This can be due to stress, exhaustion from lack of sleep, illness or injury, depression…the list goes on. The caregiver can also lose themselves in their care recipient. When you give yourself to care for another person there is little left for you.
Disclaimer:This post was not intended for the public, it started as a journal entry. I am not sharing for sympathy nor am I sharing to elicit affirmations. This is me being honest. Me hoping that if just one family caregiver sees this and takes something away it was worth sharing.
As we ease out of crisis mode and into living this new life, I have lost me. I spend my days taking care of the Big He, Little He, Dogs, House and that is when I can drag my butt off the bed or chair and focus long enough to get things done. Some days I feel like I am just putting band aids on problems and other days I can only tackle one thing. Many days I sit and mindlessly read my social media accounts. My head tells me I am being lazy, my body tells me it has hit a wall. Every day my needs are left for last. I often forget to take my meds and have put off every doctor’s appointment that should have been made in early 2019 to now. If I do take any time away for me, which usually means a quick errand, the guilt I have is so heavy that it is easier to just come back home. The one area of my life that I have maintained is the twice a month appointments to my mental health therapist…who I lovingly refer to as my crazy doctor. Guilt is a common topic as is my need to make sure everyone has what they need. People pleaser has been a term that has come up many times. Maybe people is the wrong term, family pleaser. Yep that’s better. I want to please my family. All of this has led to you guessed it, me not really knowing who the hell I am.
I have one of those fancy planners that you can buy stickers and use to make them look pretty. There was a sticker that talked about using the week to cultivate: my social, spiritual, emotional, intellectual and physical aspects of my life. I stared at that damn sticker for days and it hit me, I had nothing to add to this. I take that back, I have started to do guided meditation thanks to a very smart person I have in my life…you know who you are MHW. She started me on guided meditation and the idea of being present in my life. She is also the person that tells me to “get over that guilt shit”. In my defense she has been doing this caregiver life longer than me. It turns out she is letting me cheat off her and learn from her mistakes as a caregiver.
This has been very overwhelming and I will admit I feel a bit overwhelmed. I want to correct all of this right now. Oh, did I mention that also in my therapy sessions we talk a lot about my control issues? I know it will take me some time to first figure out how to cultivate the different areas of my life and second to not feel guilty. I like projects. My new one is that I am going to work on me.
It’s funny, well not haha funny but more like hmmmm funny… I have referred to myself as a widow in training. When I first said that it was because I was having to do all those things that the Big He did for me. Get gas, know when the oil needed changing…and not ignore the oil light, fix stuff around the house…stuff like that. I now look at it as I need to find who I am absent of the Big He. So, from time to time I will keep you updated on Project Me as I learn to navigate as a caregiver that gives her everything to her husband, her son and as important herself.
What do you think about when you hear about families with ALS? Bucket list adventures? Advocacy? Awareness? Fundraisers?
Want to add something to those thoughts? How about this picture…
It is 5:00 am. I’ve been up since 3:30 am. Why? Well around 3:30, the Big He called out to me that he needed suctioning. I went from sleeping to suctioning to doing a cough assist all within 2 mins. After he was able to breathe better, he closed his eyes and drifted back to sleep…sort of. He sleeps very light these days. Me…well I cleaned the equipment, took off my gloves, washed my hands and headed back to bed…but didn’t drift back to sleep. I’ve suctioned him three more times. So, now its 5 in the morning and I am watching him sleep..sort of and thinking if this is what people not living an ALS life think about when they think about ALS.
Something else…do you notice the distance to the Big He? I now sleep in a twin bed about 3 feet from his hospital bed. We’ve been married 29+ years. Do you think about this?
Have you thought about the fact that I’ve been up since 3:30 and soon the day will get going. I will be caring for the Big He all day. This is not a once in awhile thing….this is like an every day thing. Little sleep. No days off.
Am I complaining…nope. Just trying to provide you with something more to think about when you think about ALS. pALS and cALS don’t think about this, we live it. Daily.
If more doctors, researchers and elected officials lived this ALS life, would there be a management or cure for this disease? That’s something I think about.
Several months ago, the Big He had the opportunity to co-write a song with singer/songwriter Darden Smith. This was made possible by a non-profit in the Austin area called Swan Songs. Swan Songs grant the gift of music for those ending their journey here on Earth.
During the song writing session, I was not able to be present. So hearing the song for the first time was incredible and melted my heart. This is a love song for our family. So grateful to be able to have this amazing legacy of the love that the Big He has for our son and I.
For more information on the work of Darden Smith and his non-profit ‘SongwritingWith:Soldiers’ please visit the link HERE
For more information regarding Swan Songs, please visit the link HERE
For many, today is a day to be thankful for many things. For many, they are only celebrating with friends for a number of reasons and for many, today may not be as happy as Thanksgiving’s past. However you are celebrating we wish you love and comfort.
Amazing. Beautiful. Energizing. Heartfelt. All words to express my thoughts on the Elizabeth Dole Foundation’s Gala. I have one more but will save that for later.
The Gala is not only the Foundation’s fundraising event but also a chance to spotlight caregivers the Foundation supports as well as those sponsors that help support the Foundation. It was beyond my expectations in many ways but more importantly I underestimated how this event would make me feel or how the Gala would fill me with gratitude.
Let’s get some of the initial thoughts out of the way…First, who doesn’t like putting a fancy dress on and going to a good party-This girl definitely does. Second, the ability to be in the same room with the Doles, Tom Hanks, Rita Wilson and of course Michelle Obama was so very exciting. Third, meeting the sponsors and donors that help the Foundation carry out its mission gave me along with the other Fellows our ability to show our appreciation.
Just how did this event fill me with gratitude? Well, I had been keeping a secret for several weeks leading up to the event that was shared that night by non other than Tom Hanks. The Foundation launched a new campaign called the Tom Hanks’ Caregiving Champion. When you join this campaign, you are given a Caring Tag. The Caring Tag is inscribed with the name of a military caregiver, along with their family’s story. The tag is a symbolic token of the support you will provide to the 5.5+ million military and veteran caregivers nationwide.
Drum roll….I was asked to be the first caregiver identified on the caring tag. The Big He is mentioned as well as my veteran/spouse. Tom Hanks introduced the new campaign along with our story. The words, service connected ALS, were mentioned in a room of close to 1000 people, many were hearing it for the first time. The awareness that occurred in a moment was more than I could have ever dreamed. From the onset of the Big He’s diagnosis, our family has been determined to bring awareness to the veteran/ALS connection. Awareness for a terminal disease is often hard because many people would rather have a tooth pulled without meds than hear about death and dying. This very topic is common place for people with ALS.
What is also important is that, Service connected ALS, was mentioned in a community of disabled veterans and their caregivers. There are pretty good odds that some in that room will be diagnosed with this disease in the future. Those veterans that have served since 911, have combat related injuries have the same high chance of being diagnosed with ALS. This is why it is so important to spread awareness. While there is no cure, one is coming. With awareness and advocacy we are helping to ensure consistent care by the VA.
As a token of appreciation you will get a caregiver tag with my family on it. I ask you hold it or put it someplace where you will see it. Think of my family and the thousands like us and know that you are part of the awareness and advocacy that the Big He and I want very much to spread.