During the month of hospitalization and the beginning of dialysis my husband has lost 40 pounds. Now he is a big man to begin with and of course the mid section got bigger once he was not able to walk. Now he doesn’t have much more to spare. He has no appetite. He tries to eat; the most he ever manages is a few bites. “They” say this will pass as his body adjusts to the dialysis. His loss of strength even more than I gauged, needing assistance with every transfer and even just to roll over in bed. It breaks my heart that there is so little I can do to make it better.
Two neurologists and one neurosurgeon cannot agree on what is causing this loss of muscle tone, the painful atrophy. The rehab neurologist told me Syringomyelia is progressive. The first we ever heard of that. When I researched it further after our conversation, from what little they know of this rare disease, it is only progressive if left untreated. He had the surgery, he has a shunt in his spinal cord and all the new CT and MRI scans show no further growths. The neurosurgeon decided it was a spinal cord stroke that he in fact had; and our neurologist saw no change in the syrinx. For some reason they have ruled out any neuromuscular disorders as he does have some strength in his upper body. He can’t lift his own leg! He used to be able to carry a stack of lumber on his shoulders and maintained that type of strength up until about three months ago.
I picked up a large brown grocery type paper bag full of new RX’s consisting of lotions, potions and pills. Literally two typed RX pages, 8- by 11-in. upon discharge! So I spent the day typing up my spreadsheets. Update permanent med list, create temporary list with times to give meds, calendar with list of doctor follow ups to schedule and coordinating transportation to dialysis. It’s a wonder I had any time to assist him at all. I guess I did; he was fed, watered and tucked into bed. He also has a home health care team. They are sending a nurse, an aide and physical therapist. This is all good. He’s home, happy as he can be under the current circumstances and will be ready to once again attempt to get some quality of life back.
All systems go; the ambulance arrives to take him to his first OP dialysis. For now he needs a stretcher, he is not strong enough to do the wheelchair transfers. As I’m following the ambulance to dialysis, all of it finally hits me. Is this it? Is this our new normal? Is this all my husband gets to have? I wipe at the tears that start flowing down my cheeks.
Like a sign from above, “What a Wonderful World” comes on the radio. I love that song. It inspires me and brings me hope. Not only do the tears stop but a smile comes across my face slowly turning into a grin. Surely this is just a stepping stone, a place somewhere in between now and then. It may be a long road, and a winding road. But it is definitely not the end of the road. This too shall pass.
How much, how little remains to be seen. For now I will count our blessings and do everything within my power to keep my husband safe, his attitude positive. Here goes another adventure into the unknown.
- Happiness and Fear as Discharge Approaches (caregiving.com)
- I Can’t Play Piano When My Fingers Aren’t Happy (caregiving.com)
- Simple Pleasures, Home at Last (caregiving.com)
- If I Knew Where It Ended I’d Know Where To Start* (caregiving.com)
- Hospital Stay or Hotel California? (caregiving.com)
- Advocating Can Be a Dirty Job or I Went Kaboom (caregiving.com)
- “And now these three remain: faith, hope and love.” (caregiving.com)