Mom is living in limbo. She is stable right now and has been, with a few relatively minor issues, since she came home last December. Caregiving in this house is not the challenge of caring for someone with a life threatening disease, it’s not the kind of disease, whether acute or chronic, that has frequent medical crises, the balancing of new or changing medications and multiple diagnostic tests. The challenge, right now, of caregiving is watching someone inch away ever so slowly.
It has been over three and a half years since Mom moved in with us. Wet macular degeneration robbed her of the vision in her left eye. Her independence has been lost during that time to the point where she is being moved from bed to wheelchair via a hoyer lift. She cannot go to the bathroom when she wants, walk to the window or feed her cat. She is unable to move the wheelchair on her own due to the arthritis in her hands, shoulders and neck. Even trying to hold playing cards is almost too painful to tolerate.
Osteoarthritis isn’t a dramatic disease. In fact, most of us will feel its touch before our lives are over. But most of us won’t become so debilitated that we cannot reach our hair to comb it, hold a knife and fork to eat without pain or be able to stand to brush our teeth.
So she lives in limbo. Pain pill to pain pill. Bed to wheelchair. Wheelchair to bed. At 94 she is all too aware of what she has lost, what she wants to be able to do for herself and cannot. She hates needing to call for everything that is out of reach. The salt or sugar if I forget. The remote if she drops it. Her place in the Kindle if her tremors make her fingers touch the screen too many times or in the wrong place. She feels so out of control and so lost.
She is grateful for everyone who comes to help her, to heal her. She is so loved by her doctor, nurse, caregivers and of course her family. She loves us back with all her heart. She knows that but she usually ends her evening silently or out loud hoping she won’t wake up in the morning.
- In Limbo (caregiving.com)
- How Did You Learn to Provide Care? (caregiving.com)
- Virtual Caregiving Conference: Reflecting, Two Years After a Diagnosis (caregiving.com)
- New: A Directory of Caregiving Services, Products and Companies (caregiving.com)
- Still Grateful with a Touch of Combat Fatigue (caregiving.com)