The Last 30 Days

The last 30 days have been filled with unexpected lessons. The new pain meds Jeff was on made him unsteady and one night while getting out of bed to use the bathroom, he fell. The crashing sound of him hitting the floor woke up the house just after midnight. I rushed over, the dogs rushed over.  Both dazed, we realized he wasn’t going anywhere, and I didn’t (nor couldn’t) move him. I called 911 and shortly, 2 ambulances and 5 guys gracefully and strategically got him onto the scoop stretcher and off to the hospital. As I followed, the entire drive I was praying that it not be broken. That the last thing either of us needed, right now, was a fracture to his ‘good’ hip, the last remaining area in his pelvic region that isn’t enveloped with either metal or cancer. X-ray confirmed…he broke the top of his femur.

26 Days in the Hospital

The first 9 days were spent at the local hospital recovering from surgery to place a new rod and screws from knee to hip. With more metal implants, we’re waiting for his new superhuman strength and speed to appear. On Day 9, he was transferred to the hospital in Tacoma and spent the next 8 days at a progressive rehabilitation program. He worked hard – physical therapy and occupational therapy for a total of 3 hours a day. We celebrated Thanksgiving with a bedside, candlelight picnic a dear friend had sent us. The morning I arrived for family discharge training, I was welcomed by a “graduation day” sign posted on the outside of his hospital room door. I was excited, nervous, relieved and wanted him home. We wanted our life back.

Working Hard in Physical Therapy
Dinner by Candlelight

Something is Not Right

As soon as I walked through the doorway, I knew something was wrong. Jeff’s pain was escalating, he had spent the night throwing up and they couldn’t get the pain under control. He wasn’t ready for discharge. And, we all agreed that transferring him to the medical floor where he could receive comprehensive care was the right decision. It was a tough day for us.  They sent the psychologist up to check on us. As expected, we were disappointed, a little overwhelmed, yet more sad that he wasn’t ready to come home. 

A few nights before, I stayed up late to hang Christmas lights in the front yard and I put up the Christmas tree. I thought it would be a nice way to welcome him home.

Driving home solo that night was hard.

The Final Push

The last 9 days were spent on the cancer care floor at the hospital in Tacoma. The collective goal was to “hurt less so Jeff could do more”. The entire team was hyper-focused on pain management and improving his quality of life. We worked with a talented and compassionate palliative care and neurology team. And, after days of trying a well-designed sequence of pain meds, we all agreed it was time to move forward with surgery to place an intrathecal pain pump into the spinal fluid around the spinal cord. It delivers targeted pain medicine with far fewer side effects compared to oral medications. The surgery went as planned, recovery was a bit rough and he was discharged last Friday afternoon with, you guessed correct, more metal. A proud owner of a titanium pump installed under the skin, just to the right of his belly button. The superhuman strength and speed are coming…we know it.

We left the hospital armed with our new tools: a walker, wheelchair, shower seat, toilet support bars and gait belt. We had trained in rehab for the 5 stairs into the house, we perfected our transfers to and from the bed to the toilet and safely taking showers. We made a few modifications to the house for safety and will do more in the coming weeks.

Safety First!

Individuals with metastatic cancer that has spread to the bones are at greater fall risk which means working together to keep him safe is priority #1 as he builds back his strength and reserves.

But, Wait…

On Saturday, he woke up with a complication from surgery. A known risk of surgery is the development of a spinal headache where spinal fluid leaks, causing nausea, vomiting, and the mother-of-all headaches that seem to lessen when lying horizontally. They can frequently resolve themselves with rest; however, not in Jeff’s case. And so yesterday, we were back at the hospital to have a surgical procedure called an epidural blood patch to clot and seal the leak. What made it more interesting than normal is that the doctor allowed me to accompany Jeff in the operating room. It was a pretty cool experience and far better than hanging out in the waiting room where many people believe this holding space gives them carte blanche to share their various ailments, each one worse than the next. The procedure went well, he’s back home, headache is reduced and we’re looking forward to a few uneventful, boring days.

Day 30.

Today marks 30 days from the date of the fall. Today, I’m not driving to the hospital and meeting with doctors, and sending emails to coordinate with the Seattle cancer center. It’s the first day I’m not finding a quiet corner to have client calls. And I no longer have to work on graduate assignments sitting in uncomfortable hospital room chairs.

I knew we had been at the hospital too long when the café staff asked for my employee card to swipe before paying.

Reflections

Today, I reflect on the positive and negative impact being an active advocate has on my work, personal goals, my mental and emotional state and relationships.

While in the hospital, I chose to spend about 4 hours/day with him. Depending on work and school schedules, I tried to visit during a meal time so we could eat together and connect with the medical team. On the weekends, I was there longer to keep him company. It accounted for 120+ hours over the last month. It was taxing for us both.

I also feel proud and am filled with a strong sense of accomplishment for how we got through this experience together.  I know my strength of being an active advocate makes a positive difference in Jeff’s life. I’m demonstrating my love for him through my words and actions.

I felt comfort knowing the nurses, nursing assistants and doctors were taking care of him, they were listening to us, our needs and our goals. They were true partners in improving Jeff’s health. Every night I left the hospital, as much as I wanted him home, I knew he was being well taken care of. That alone released me from the worry (not all of it) and helped me to get solid rest at night, which allowed me to be a stronger active advocate the next day – to myself, to Jeff, to everyone in my life, including my clients.

This extended hospital experience wasn’t our first rodeo – it was our fourth. It was; however, the longest hospital stay we’ve endured, not taking into account ongoing treatment for prostate cancer that started in 2014. I am hoping we do not have to experience something like this again.

The anesthesiologist pulled me aside and said: “You guys need a break. This should help to get things back on track.” It took everything in me not to give him a hug. Simple words and the timing was perfect. In that moment, I felt the wave of relief.

Moving Forward

The daily responsibilities of a caregiver don’t end with a hospital discharge. This is when the tasks filled by the hospital staff such as bathing, dressing, bathroom, medications, meal time now shift to varying degrees to the family caregiver.

It adds another level of responsibility we weren’t having to work through before the fall. For now, I think it’s temporary. There may come a time when he requires greater personal care support and we’ll explore options that make sense.

Tonight; however, I’m looking forward to a glass of wine and enjoying the Christmas lights together – in our family room.

Home at Last.

Post Coming Soon:  How to Be an Active Health Advocate.

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11 thoughts on “The Last 30 Days

  1. Jen –

    You are a incredibly brave person! I’m glad Jeff has finally made it home. I hope you both have a Merry Christmas and Happy New Year.

    Mike

  2. Jen… your words travel far and bring a smile, validation, inspiration, determination, and a reminder on the tenacity and power of caregivers… there are so many remarkable people just saying ‘it is what it is’ and rolling with each day…

    1. Kat – thanks so much for sending your caring words all the way from Australia! Rolling with each day is a great phrase to use. The % of primary caregivers in their 40’s who provide primary care for a parent or spouse is relatively low when compared to other age groups. I’m hoping my “sitting in the seat” and sharing tools and perspective will help others as life unfolds and they themselves in a caregiving situation.

  3. Jen,

    You are amazing. My uncle was a caregiver to my aunt who passed away from Alzheimer’s. She was 61 years old. It takes a very special individual to be able to do what you are doing. I have the utmost respect and love for you. God Bless and know that lots of prayers are being sent your way for you and Jeff. Love and Hugs!

    1. Stephanie – thanks for your kind words and I’m so sorry about the loss of your Aunt. I suspect your Uncle has words of advice that would help many who are currently experiencing the level of daily care he provided.

  4. Jen and Jeff,

    Enjoy your quiet times together. I’m happy to hear the hospital stay is over.
    Merry Christmas and Cheers to the Happiest of New Years!

    1. Penny – thank you for taking the time to post your holiday wishes. We are looking forward to quiet times ahead indeed! Merry Christmas to you 🙂

  5. Thank you for sharing this. As the primary caregiver for my son, I have learned the need for personal time. Having outside caregivers come in to provide respite is not being selfish. There are good days and days that don’t always go as planned. There are times I have to remind myself that this is not something he or I chose. “It is what it is” is a statement I make often. We do what we do out of love. Family is everything.

    1. Malia, thank you so much for your comment and sharing your experiences caregiving for your son. Personal time is valuable and you’re spot on – it’s a need. Respite care is an option I hope more caregivers will consider. I know when I get a few hours to myself, I feel renewed and far more capable of being a stronger advocate for his health – and mine.

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