I am thinking of two separate postings. This first one seems important as context., which should have been first. The next section is the most recent.
As you know Chuck has struggled with increasingly painful and debilitating back pain for over 20 years. No treatment has helped for very long, if at all: one low back laminectomy surgery, numerous injections, a stimulator his body rejected creating life-threatening sepsis, several rounds of physical therapy, two rounds of inpatient treatment designed to eliminate or reduce his opioid medication (which never worked), and techniques we don’t even remember.
Finally, we agreed to a 360 Fusion combination Laminectomy and spinal fusion as the only option to avoid increasing opioid dosing. Dr Jeffrey Phelps, Spine Works Institute, performed what is called a 360 degree fusion, entering from the front and the back, on November 3. The surgery was 7 hours long with Dr Phelps as the spinal surgeon. Another surgeon was standing by since they had to move organs over to get to the front of the spine. I do not remember his discipline. My nurse sister-in-law, Chuck’s brother’s wife Karmyn, may be able to help me here. Dr Google could not and it is too hard to get through to the doctor’s office as it is to ask such a trivial question.
Although we have excellent health insurance, Chuck was denied admission to an inpatient rehab hospital. He spent 6 wasted days in a skilled nursing facility (SNF) with three 45-minute physical therapy sessions. Most of the staff were outstanding but the services were “not consistent nor beneficial,” to quote Chuck On the 4th day we both noticed tremors on his hands and legs.
On the sixth day, he fell on the way into the bathroom while using his walker. He was taken to North Hills Medical City emergency room, in N Richland Hills. Based on a family and professional appeal, Chuck was admitted to Texas Rehabilitation Hospital. The 27 staples on his 3-inch C-shaped scalp laceration are now down to 15 as the area pops the staples out. Texas Rehab Hospital had been approved and we left the emergency room and checked into the rehabilitation hospital. The tremors continued to worsen and on the second day of admission, the supervising RN on duty talked with the hospital consulting physician. He recommended returning to the emergency room. Although one was closer, we returned to North Hills, where Chuck’s records were from procedures, testing, and in-patient stays.
ER testing resulted in admission for a bruised kidney that could be physical or chemical. He was treated with IV fluids.
A consulting neurologist has seen him every day while here. The tremors continued and worsened. EEG, ordered by the consulting neurologist, showed no evidence of injury, stroke, TIA, or other problems.
- Insurance and money
- Family Caregiver
- Surgery recovery
- Fell in his hospital room
- Complaints of pain in his knee and right hand
- Confusion, memory, and “sundowning” symptoms
- Testing for Parkinson’s disease
- Diagnosis – don’t know yet
- Chuck and I have been married for 28 years and I miss my husband being home and our routine. He opened his eyes at the last ER visit and asked me if I knew what I wanted. I answered “A Coke.” He said no and that he wanted one night at home together in our recliners with our dogs. I teared up
- Keep up discussions with Chuck that this is temporary and will change.
- Remind myself how much we are grateful for.
- Continue to be grateful for family and friends always there for us.
- For six months as his health declined, I took on more and more responsibilities around the house. Both our sons have said to ask for their help but I can do it and they have such full lives already! Just like other caregivers are.
- Ask for help.
- Accept help.
- Be gracious about it.
- My chronic back pain and sciatica are worse so I am using Chuck’s cane to reduce my risk of falling.
- Start exercising more consistently.
- Go to Yoga classes every week.
- Use the recumbent bike, even if it is a few minutes a day.
- I am semi-retired and still love what I do but find I am less focused and lack the interest and energy that I have had.
- Already done:
- Sent an email to contract clients will be working less
- Training my web manager to take on more responsibilities which she has. Awesome partner!`
- Already done:
- I average 5 hours of sleep a night so I am tired.
- Make myself leave the hospital or facility at a more reasonable time.
- Eat better.
- Get in bed and either go to sleep or listen to sleep-friendly music and meditations.
- I slept better last night in the hospital recliner converted to bed than I have in weeks. I may stay here Thanksgiving Eve but definitely Thanksgiving night. So maybe sleep at the hospital or rehab center.
- Diabetes – I had asked for a glucose monitor but here we are a month and the company said they were waiting for Medicare approval, having just gotten the doctor’s prescription.
- Start taking prescribed injections of Trulicity once a week to manage nmy type 2 diabetes. It has been shown to reduce the risk of major cardiovascular events, such as death, heart attack, or stroke in adults with
- Eat better
- Social isolation, usually by choice, but
- Spend time with Friends
- BFF at our pedicures and sitting it in the car with sodas to chat
- Sushi with long-time friend
- Phone calls and text
- Laugh more
- Read books, listen to audiobooks, watch YouTube, watch innocent often dumb motives
- Start scanning a century’s worth of family photos. Doesn’t have to be all at one time, does it?
- Find something to do that I enjoy or I can learn
- (it wasn’t the guitar although I tried. Didn’t want to put the time in to practice). My travel wall and sandscapes are all done.
- Crochet some more dishcloths, coasters, throws, etc
- Learn to knit? That purling always gave me problems
- Organize something I have put off. I enjoy seeing it done. I asked for some help with the garage for Christmas
- Spend time with Friends
- Worry – Reminding myself that having come from a family of world-class worriers, I am a worrier-in-recovery. When I start that “what if” thinking, do something else that I can see results in. What I (or anyone) worry about never happens that way anyway!
- Too intense and serious
- With the dogs
- Cherish and play with the grandsons when they are here, talking to them, and seeing their photos and videos.
- Watch more funny or lightweight movies
- Make exercise play or fun.
- Read all those free blogs I have written or edited with my awesome web manager partner and use information from the 20-year-old website I created and am responsible for now evolving under the management of my outstanding web manager
- Etc, etc. ???? I could go on and on
I know how. Learn some new things. Just do it!