Family Update as of August 19, 2021
Update from Amanda Hoffman
“No one ever told me that grief felt so like fear.” C.S. Lewis
Loss of any kind brings out some overwhelming emotions. These emotions are new and scary to someone who has never experienced a medical trauma in someone as close as a spouse. When Bob was in the hospital and in rehab, I was definitely in denial. I’ve written about this before, how I was able to compartmentalize my day into farm work, kids, household chores, and then have my time for Bob. Denial for me may have really been in the form of shock; moving through my days like a zombie, barely processing the information from neurologists and therapists and floating along with their guidance. Now that he is home and I am his 24 hour a day caregiver, our new reality has surfaced some unexpected emotions.
I’m not angry at Bob. That’s the last thing I want him to think. I’m angry when the dog barks incessantly. I’m angry when I burn the toast. I’m angry when I can’t find my LWF shirt for summer camp. I’m angry when I see my laundry basket of medical bills. I’m angry when I don’t get to the gym for three days in a row. I’m angry when I get a splinter in my toe at the beach. You know, in the south, we are allowed to get angry over those little things. But when the shit really hits the fan, and our lives are shattered, those are the feelings we push down to the depths of our gut. We grit our teeth and smile, creating a pounding headache behind our expertly applied mascara. We fix our make-up, hide the crazy, and act like a lady. We cook and we clean, we dress our children in matching seer sucker, and bring the apricot delight jello salad to the church supper. I joke, but I have stuff to do people. I don’t have time to think about my feelings. I have kids and horses and summer camp and laundry and I have to just let the moment pass and move on to the next thing. I have plenty to do to occupy my time but these can only hold me together for so long; can only distract my mind for so long. The truth is, my mind and my heart are a mess.
I’m not one to get angry at God. I never have been. I think questioning God is different than being angry. Deep in my heart of Sunday School hearts, I KNOW that challenges require perseverance, which in turn creates character. Like any other hardship in my life, I know that I will find inner strength I didn’t know I had, I will have strong people around me to hold me up, and I will discover that the reason for all of this is so I can help others in the same situation. But the grief moves in a series of cycles, not a line with the end in sight. Just when I think I’m doing ok, some small little thing sends me right back. Maybe Bob asks me the same question over and over again. Or he wakes up thinking it’s our wedding day (for the 15th day in a row). Even our new bedtime routine can sometimes bring me to tears. It turns out that showering your husband and tucking him into bed is pretty sobering.
Bob has been getting amazing therapy. He has come so far in the three months that he has been home. His short term memory has improved so much that I sent him into Hannaford the other day to get three items, no list, and he came back with all three! His PT has him back on the bike and running. He cooks dinner for us once a week with his OT. Even when he talks to people, he is so much more himself, the jovial, verbose, story teller that we all know and love. My dear friend from VA recently visited with her family, and she knows. She knows that for appearances sake, Bob is “back,” but I don’t have my husband back. This is where grief transitions to fear. I try so hard not to dwell on the what if’s. What if he isn’t able to drive? What if he isn’t able to go back to work? What if he isn’t able to stay home by himself again? I know I shouldn’t, I know it’s a waste of energy and stress, I know that it’s ultimately out of my control. But I’m only human, and grief is a lonely, lonely process.
So thank you. Thank you to my friends who see me. Thank you for your persistence in trying to get me out of the house. Thank you for encouraging me to talk and share real feelings. Thank you for the bottomless cups of coffee, glasses of wine, and vodka lemonades. Thank you for continuing to ask me what I need even though my response is always “I don’t know.” Thank you for understanding that this is not a linear healing process, and that my mental health has peaks and valleys. You make the great alone a little less lonely.
Thank you also to our family at CrossOver Fitness for organizing the Bob Strong fundraiser last month. We were completely overwhelmed by the generosity of our community. The kindness and empathy that has been extended to us since Bob’s injury is such a comforting reminder that we all struggle and we all have experienced pain and loss. Thank you so much for being the rainbow in this cloud over us.
Bob’s Health Update as of June 17, 2021
Update from Amanda Hoffman
Traumatic brain injuries are often called an “invisible illness.” Some patients who are recovering from a brain aneurysm or stroke can appear physically healthy. There’s no evidence of physical disability, no sagging of the face, no loss of use of a left arm, no difficulty speaking. What isn’t obvious to most observers is the effort of remodeling the brain. The brain is constantly doing mental gymnastics to not only keep up with the physical body and keep it moving the way it should, but also to process the world around. Cognitively the files in the brain are not in the last place they were left, they are scattered and disorganized, and it takes a lot of energy to search for information.
This is certainly the case for Bob. Prior to his injury, Bob was extremely physically healthy. His muscles were strong, he exercised daily, he worked an intellectually challenging job. Even though he was considered critical for 23 days, his physical strength allowed him to bounce back relatively quickly. (Minus 30 pounds.) However, the brain bleed that he suffered was the most critical brain bleed that Portsmouth Regional Hospital had seen to date. Thankfully I did not know this until we were on our way to rehab. Our neurology team really protected me from a lot of fear, repeating to me not to worry about something that might not even happen. Now that we are receiving home health services, this seems to be an ongoing theme. Focus on strategies and successes for today, regardless of what tomorrow might bring.
So while Bob looks healthy and strong, which he is, only those who are part of his daily care know that he is not yet back to himself. We know how fatigued he can get after only 20 minutes of an activity. We know how confused he can get about the daily schedule and the activity on the farm. We know that he can’t remember conversations from earlier in the day, or the name of someone that he’s just met. We know that sometimes he still thinks he’s in Virginia working for his old company. We know that the he can’t pick out clothes for himself without guidance. We know that he will stand in the shower staring blankly until we point out which soap is his.
This week, while playing backgammon with Cat, Bob lost the use of his left hand. He couldn’t get it to pick up a piece to move. He was staring at his fingers, willing them to clasp the disc, and they just couldn’t. Standing in line at Scoop Deck for ice cream, he must’ve asked me 10 times what flavor I was getting, legitimately forgetting. Every morning when we wake up, he asks, “what’s the plan?” He asks about his parents, his brothers, my parents and who is coming over today. Bob told his PT the other day that “I don’t feel like I can’t do it, I just struggle with the how.” It’s like he knows what he should be doing and thinking, but can’t quite get all the pieces lined up.
The biggest change in Bob is his lack of motivation. We used to call him the “energizer bunny” because he would go from dawn to dusk. He would get up and ride his bike 20 miles at 5am and then prance into work. He would haul and stack 350 bales of hay on a sweltering summer day and then throw down at the lobster pound. Bob was always on the lookout for improvements on the farm, always in his overalls walking around like he was on a mission. Most days now I can’t get him interested in anything for longer than a few minutes. He can sit quietly on the porch and just stare into space for half an hour. When someone suggests a game of backgammon, half the time he says no and just wants to lay on the couch. He kind of wanders around the house, pouting that I won’t let him play on his phone and shrugging off any other activities. At the end of the day, he is exhausted by 8:30. We brush his teeth, put on pajamas, I tuck him in, and we pray. We thank God for one more day together and the progress made. We thank God for providing the people we need to help and encourage us. Silently I plead with God to give me my husband back. In my head I know that he has suffered a trauma and we have many days ahead of us to get back to regular activity level. But in my heart I’m lonely and I miss Bob.
I keep comparing this journey to a marathon. I feel like we are around mile 14 or 15 right now. We are too far in to see the starting line, where we came from, but not far enough into the race to see the finish line. All we can see is miles of lonely road ahead of us. Like running, recovery is a very personal experience. It can feel so lonely in those middle miles, and the exhaustion is disorienting, not knowing which way is forward anymore. All we have to go on is faith. Faith that God will provide the daily strength to keep going, faith that our marriage and our family can take the daily pounding, and faith that we will reach a point where we can rest and find peace with the outcome.
Bob’s Health Update as of June 5, 2021
Update from Amanda Hoffman
“Stop looking for happiness in the same place you lost it.”
Apparently I’m a member of the “club of the bad thing.” A TBI doesn’t build up and loom over you for years like cancer or dementia or even ALS. Author Allison Pataki describes the line between the before and after as giving you “emotional whiplash.” A TBI instantaneously changes your life, and all of a sudden, this is what we are doing. We are waiting for our loved one to open his eyes. We are waiting for him to speak. We are waiting for him to walk, to feed himself, to dress himself, to remember his kids’ birthdays and where he lives. All of a sudden we are putting bells on the door to alert of movement at night. He’s wearing a watch with GPS in case he makes it all the way down the driveway without being noticed. We are counting pills, forcing vegetables, posting stop signs on the stairs. The “bad thing” has happened, and all we can do is adapt.
This week has brought some big changes for us. Bob had his initial evaluations last weekend with Rehab Without Walls and started receiving services this week. It’s intense! He receives two different types of therapy a day; a combination of either physical, occupational, or speech, and each session is 2 hours long. In our first meeting with the speech therapist, I think I took three pages of notes. She’s working on reformatting his brain: trying to turn his curvy back roads of recovery into an information highway. The average person has a working memory of 15 seconds; Bob’s is 5. His hippocampus has been hijacked by the aneurysm, and that is the structure of our brain that codes everything we hear and turns it into memory.
She noticed how well he compensates for missing information, and how hard he works to “fill in the gaps.” When he doesn’t know the answer to a question, he goes into his long term memory and retrieves something old or he makes up an answer. He sat at the table for 20 minutes trying to figure out what year it was and how old the kids are. He thought Katarina was in third grade (she’s in ninth). Several times the speech therapist has heard that the best part about Spaulding Rehab was the helicopter flight over Boston. He joked to the PT that one of his goals is getting back on the six foot unicycle so he could juggle for my birthday. We’ve been together over 20 years, and I know Bob and his history almost as well as I know myself. He’s never been in a helicopter. But he does know how to ride a six foot unicycle and juggle.
Bob has had several field trips with us this week to the kids’ games, to the gym, and even to Wal-mart. His occupational therapist took him to the grocery store with a list that we created. He did great, but went back to the chicken four times because he forgot that it was already in the cart. PT had him working with us in the barn, and it took him 22 minutes the first time he scooped a stall. He scrubbed the same water bucket three times. For those of you that have seen him, you know that it’s a complete miracle that he’s walking and talking and out and about. His conversations with you may seem completely logical and somewhat normal, with a few “quirky” comments thrown in. We bring the wheelchair everywhere, because once he gets tired he’s like a floppy toddler. There’s no forward movement happening, there’s no amount of pleading and bribery that works, and he will lay down right where he is. When he’s tired he starts to repeat himself. He asks where his parents are, when his brothers are coming, what my parents are up to. If he’s away from me for too long, he starts to wander on Cat and completely loses focus. It’s very hard to redirect once he realizes I’m not available. At night he says, “I’ve missed you. It was really nice to see you today.”
My husband is so smart. He holds an engineering degree and an MBA. He’s managed projects and people for a very successful career in manufacturing in Virginia and Shanghai and now with Pratt and Whitney. I married that man for his brain. This is what constantly brings me to my knees asking WHY? I don’t need an answer. I may not get an answer for a very long time. That’s ok. It must be ok to ask God WHY. Job, David, and even Jesus asked God why. The only answer we receive is the reminder that He is in control. Most days I’m ok with that answer and it’s enough. Some days, like this past Monday, I spend all day chasing him around, trying to get him to eat and drink, trying to get him involved in a game or activity, reminding him that we live in Maine. Everything he does makes me sad for our life before the “bad thing” and I eat all the chocolate I can find and cry so hard it hurts. I won’t find happiness there. Those days aren’t coming back to be exactly the same. It terrifies me to think that he won’t fully recover; that I will mourn the loss of a husband that’s actually still alive. I won’t find happiness searching for the “before.” It’s a daily lesson for me to be thankful for the small accomplishments, to fully trust God’s plan, and to find happiness in the “after.”
Bob’s Health Update as of May 27, 2021
Update from Amanda Hoffman
“For better or for worse.”
A short little line thrown into about every marriage ceremony that I’ve ever attended, but are you actually prepared for that latter part?
Our first week home has been a complete roller coaster. Everyone is so excited that Daddy/Uncle Bob is home, but we have to pump the brakes on our energy. He’s not the energizer bunny Bob that we are all used to… the guy that can’t sit still and moves from one project to the next. He’s happy to sit on the porch and nap. Happy to be rolled down to the barn and watch us scoop the poop. He loves going to the kids sporting events and saying hi to everyone. But we have to make sure he has quiet time, and decompress before bed. I have to remind him to brush his teeth, to put socks on, to eat his vegetables. On good nights we only get up twice in the middle of the night. On a bad night he gets up 6 times. The one time I sleep through the bells jingling on the door, I race through the house looking for him and find him standing in the middle of the garage in the dark, not knowing how to get back into the house.
Our six children are amazing, if you haven’t heard. They sit with Bob, play games, watch Marvel movies, have wheelchair races. But they also watch him so I can shower, or so I can change my clothes, or do evening chores. We have hand signals to tag out when someone has to leave the room. They know how to remind him what day it is, or quiz him on what he had for lunch.
Our approval for Rehab Without Walls finally came through this week, and we should have regular services beginning Monday! I’m so excited to participate in his therapy and get some real strategies for accessing his memories and cognitive skills. We had to fight for this specialized program, to give him the best chance possible for recovery.
Please stay with us as we continue this journey. Seeing you all at the farm or at the ball field or at the gym fills my cup. Life never moves in a straight line, and we don’t get to write the script. But the characters matter.
Bob’s Health Update as of May 23, 2021
Update from Amanda Hoffman
Almost two months to the date of his aneurysm, Bob walked out of Spaulding Rehabilitation and came home on Wednesday, and I have not had the time or the energy to update you, my friends. While the drive back and forth from Boston was tiresome, I knew he was in good hands. Honestly, with him there, I could compartmentalize my day. I could put my heartache about Bob’s condition in a box and just open it from 3-8pm. I had no idea what home life was going to be like. Now that he is home, we are on watch 24 hours a day.
Taking care of Bob at home is very similar to taking care of a dementia patient. His short term memory is misfiring and he is unable to recount events of the day or the meal he just ate. The psychiatrist at Spaulding helped by explaining that right now Bob doesn’t have the capability to make new memories. He may never remember what he’s going through now, and right now he definitely doesn’t remember events from day to day. We try to take lots of pictures and video so he can have some sort of documentation to look back on.
Bob does enjoy being outside and watching the farm girls ride horses. But he tires easily and takes multiple naps during the day. Usually we use the wheel chair to tour the farm so he has somewhere to rest. One of our biggest struggles is that he gets very disoriented in the house. He forgets where the bathroom is, and even our bedroom. He gets up frequently in the night, and I have bells on the bedroom door to alert me. He wanders in the middle of the night, tired yet unsettled. Last night he was up every hour, needing to move and use the bathroom, but I have to follow him because he opens every door and wanders around every room. Bob is very stealthy, and as slow as he is, can disappear on us within seconds of our backs being turned. While he can walk unassisted, he is unstable especially when he’s tired. The biggest fear with his instability is that he finds his way to the stairs. We moved our bedroom to the ground floor to eliminate the risk of climbing stairs, but we are waiting for permits to complete construction on a full bath downstairs.
We are still waiting on insurance approval for Rehab Without Walls, a nationwide rehab program that is designed for Neuro patients. Our original plea was denied, but his doctors from Spaulding have personally called the insurance company to appeal his case. It is so important for Bob to receive these specialized services, as he needs every chance he can get to regain his cognitive abilities.
Thank you to everyone who has helped us make it this far: bringing meals, driving our kids, farm chores, farm projects, encouraging texts and calls, sending packages to Bob at Spaulding, trying to get me out for coffee (or other beverages). I appreciate your perseverance and friendship.
Psalm 94:19 reminds me that I can’t let my anxiety about Bob’s recovery control me. “Whenever my busy thoughts were out of control, the soothing comfort of your presence calmed me down and overwhelmed me with delight.” The responsibility of our new reality weighs heavy on our hearts, but like everything else, we focus on one day at a time. I can’t worry about something that may never happen, I can’t bear the burden of tomorrow’s anxieties today. My husband is home, our crazy clan is back together, and we will put all our effort into playing out this symphony that has been written for us.
Bob’s Health Update as of May 12, 2021
Update from Amanda Hoffman
“Perseverance is not a long race; it is many short races one after another.” (Walter Elliot)
We look at every day as a new short race for Bob. Each day is different from the last, with different goals, different strengths, different challenges. His therapy team at Spaulding continues to push him physically and cognitively. The good news is that he remains positive and humorous. He has become less impulsive, but physically stronger so he is able to move more throughout the day. He is still under 24 hour supervision, as his safety awareness is still developing. Bob wants to be on the move, and craves social interaction.
I‘m driving to Boston every day, a three hour round trip, and spending around four hours with him each evening. We usually have dinner together, video call the farm family, play a game or two of Connect Four, take a walk, and watch some hockey. I help him get ready for bed and give him a massage before I leave to help him relax. He has had a hard time sleeping and is still on the melatonin, but we are trying to avoid sleeping medications. The massage is a big help. The challenging part is that his cognition comes and goes. Some days he can be very conversational, but other days he has a hard time focusing for more than two minutes at a time.
Bob recently met with Dr. Joseph Giacino, who is a world renowned neurophysiologist. They are heavily focused on retrieving his short term memory, such as a sense of time, location, and recall of the day’s events. I cannot express the respect I have for anyone in the field of neurology. We have met some very famous doctors, and their attention to and patience with Bob’s case has been so deeply personal. Spaulding really does have the best of the best, and I am thankful for the people that helped me fight to get him there. I know without a doubt that we will finish this marathon stronger than we started. Our marriage, our friendships, and our trust in God will be powerful and will have endurance to see us through to the finish.
The Back Story
On Monday, March 22nd at midnight, Bob Hoffman experienced a brain aneurysm. The last several weeks have been a significant journey for the Hoffman family as well as the entire Living Wells Farm community. The outpouring of love and support have been an amazing testament to the strength of this community. As Bob and family continue their journey to recovery, there are growing needs at both the personal and business level. Living Wells Farm is a true family owned and operated business. As such, personal finances overlap significantly with the health of the business. The current circumstances of Bob’s health were on the heals of a pandemic, in which income producing activities such as trail rides, horse riding lessons and summer camps were limited over the past year, creating cash flow stress which continues to ripple after the winter months.
There is great hope that this summer season will get the farm revenue back on track but there are still many responsibilities that Bob would have normally managed in terms finance and operations that he is not currently able to do. There have been many people that have reached out to offer help, some locally and others abroad. This page is designed to help coordinate efforts and share the priorities that would be the most helpful both in terms of tangible volunteer help as well as financial gifts. All donations will be given directly to the family for their use in the items listed on this page and based on their discretion as to the most significant needs that arise including health care costs, personal expenses related to hospital visits, as well as farm operating and maintenance needs, etc. Due to IRS regulations, gifts will not be tax deductible
As medical bills continue to roll in for the intense time Bob was in the hospital along with ongoing costs of Therapy and Farm Staffing. If you are willing and able to continue to financially support the Hoffman Family and by extension the Living Wells Farm community, please click the Give button below.
For context for those that may not have been as close to the Hoffman family, here is a short excerpt on who, what when.
On Monday, March 22nd at midnight, Bob Hoffman experienced a brain aneurysm. The last several months have been a significant journey for the Hoffman family as well as the entire Living Wells Farm community. The outpouring of love and support have been an amazing testament to the strength of this community. As Bob and family continue their journey to recovery, there are growing needs at both the personal and business level. Living Wells Farm is a true family owned and operated business. As such, personal finances overlap significantly with the health of the business. The current circumstances of Bob’s health were on the heals of a pandemic, in which income producing activities such as trail rides, horse riding lessons and summer camps were limited over the past year, creating cash flow stress which continues to ripple after the winter months. This is what this page was originally designed to help communicate. We will continue to use the digital space to update what is happening for friends and family near and far.