Today the Big He and I celebrate 30 years of love. My anniversary go-to gifts to the Big He are typically those that he can use to either fish or grill. ALS has taken those things away so the challenge now is what to give that is meaningful to him. My gift this year to my better half is the gift of memories. To remind us of our amazing life together.
Pandemic hair and this wife does care. The Big He needs a haircut. He said he would not cut it except for a good cause. He wants to support Hidden Heroes like me, but he needs your help. He will cut his hair if we meet our $5000 goal. Can you help us? Give a little or a lot. Collectively we can reach this goal. You will not only be helping support veteran caregivers but you will help this wife get her husband’s haircut. It’s really long folks! You can give at the link below. Thank you.
In February of this year I vowed to take better care of myself. I even did a blog post on it, I called it Project Me. At the time I was in the mindset of actually doing it and have, to some extent. I started practicing daily mindfulness. Planning and executing my daily to-do list and getting on my treadmill 3-4 times a week.
Caregiving and living during a global pandemic stopped me in my tracks. We were paying attention to the Covid crisis in February and in early March it was clear we needed to hunker down. Like everyone else, we started to anticipate and buy those things we would need as we became housebound. What we did not factor in was the shortage of supplies that are necessary to our everyday lives. It wasn’t just things like toilet paper and alcohol, it was hand sanitizer, bleach wipes, masks, gloves, distilled water and the respiratory supplies the Big He needs to survive. He is on a ventilator and our daily needs include many of the same items people stockpiled and what hospitals use. The initial stress of getting supplies, distancing ourselves from everyone and limiting who comes into our home was pretty high and I often felt like I had no idea what I was doing. We knew that should the Big He get sick, we would not have the safety net of the hospital. More stressful is the fact that the Big He does not have the reserve of a healthy person and his outcome would most likely be death. Between family and my caregiver tribe much needed supplies started to arrive. We also began to ration the respiratory equipment and stayed vigilant to who was allowed around my family. He became sick in March/April (not covid) but we were able to do the things we needed to keep him home and get him well.
In addition to keeping my family safe and healthy, I was beginning to gear up for what has turned out to be the biggest fight to date with the VA. I had been asking, for over a year, for either respite services or a skilled night nurse a few days a week to give me much needed sleep. The answer was always, no! I never received anything to support the no decision, it was just, no. Now let me just say here, I am okay with a no answer if you can support it, but when you have no support either by regulation/directive or other, I won’t accept it and I will challenge it. Challenge is what I had to do. With the help of my caregiver tribe and lots of research and effort on my part, my request made it to National VA. From there, our VISN was roped in. [The VA VISN is a service network and ours is over most of the VA Medical Centers and clinics in the State of Texas. They are in essence the ‘Mother Ship’]. After about three weeks, a video meeting with the Director of our VA and discussions with VISN, skilled nursing was granted for a few nights per week. This was a HUGE win for those caring for our most fragile veterans in Central Texas and what I hope will be the State. It starts with one person…that is what I keep telling myself. All of this has left me physically, emotionally and mentally drained. I have withdrawn from everything and everyone with the exception of those in my home and my family. Most days, I find it hard to do anything but mindlessly watch TV or scroll through social media. Any fight I had, has been used up on the VA.
I recently read something about ghosting and that made me wonder if that is what I have been doing? I mean, it does seem like I just stopped communicating with friends. For me, I got to a point that I had nothing left to give. While scrolling social media, I would think to respond but all I seem to be able to do is just hitting the “Like” button. Finding the time and energy for practicing mindfulness, exercising or even getting my to-do list done didn’t happen. At a time when I need these things the most, my internal drive no longer worked. It’s stress, depression, and exhaustion or burnout. I know not getting enough sleep is not good for you, but the level of exhaustion I have been at was truly threatening my health and that of my family. Living with this level of burnout is like being in a boat on ice filled water. You can move through it but it is slow and one piece of ice has the chance of putting a hole in your boat and sinking you. You can’t just take time for respite or leave for a good night sleep if there is no one to cover you. Yes, we have daytime help but the Big He really needs two people in the home to make things work efficiently.
We have had a skilled night nurse for two weeks now and one of our caregivers spent the night recently. That is five days of sound sleep in 14 days. That is more sleep than I have had since last October. Those five days have been good for me. It is Sunday night and I can say I will start Monday with more energy than I have had in awhile. I am using the time I have night care not for catching up on the endless list of things to do, but for sleeping. I am planning on not pushing myself and listening more to my body on what I need. So be understanding and don’t take it personally if I don’t respond. I am not ghosting you, I am just being a caregiver.
All my love,
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.
All my love,
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.
All my love,
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.
Happy National Puppy Day
All my love,
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.
All my love,
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.
All my love,
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.
Until next time.
All my love, The She