We Can’t Fix This.
03 Sep 2009 3 Comments
in elderly, family, father, nursing, Parkinson's Disease, Uncategorized, Worry
Listening to the Hospice doctor speaking to Fay and I today, I was reminded how serious the job of helping someone die really is. We had our first Hospice consult on Friday last week. Six days later, we’ve had 4 scheduled RN visits and one highly unscheduled visit when Charlie fell. We’ve had two social work visits. Today, Dr. Playfoot came here and stayed until we were ready for him to leave. Nearly 90 minutes.
He cared, he talked, he asked, he questioned, he looked, he examined and observed. But most of all, he was a human treating a human. Not a clinician treating a symptom.
So often in the medical field, we want to fix the thing that bothers our patient by throwing medication or therapy or tests at them. For nearly 30 years, Charlie has been rescued and sustained by an ever-increasing number of medicines. New surgeries, fake heart valves and blood tests. He has a neurologist, cardiologist, urologist, endocrinologist, podiatrist, internist, gastroenterologist and a family doctor who shall remain nameless because he’s the most incompetent physician to walk the earth.
Now, he has a hospice team who will save him from blood tests, unnesecary pills, and stupid ideas of physical therapy. He has a team of people who care about all of us and are willing to help him live comfortably as long as he wants. They are also willing to help him die comfortably when he decides to give that a try.
They are the first people to ask Andy and I how WE are doing. The social worker stopped by unannounced with information on how the kids can deal with this.
We can’t fix this. Fay wants to try, but we can’t.
Today she found out that no one can fix it. Dr. Playfoot told her that he can’t fix each symptom…we’ve lost part of this fight to PD.
Maybe she’ll get it.
Trial Run
22 Jan 2008 1 Comment
in aging, elderly, family, grief, nursing, Parkinson's Disease
Four and a half years ago, Andy and I made a decision that has greatly affected our lives in ways we weren’t prepared for. We bought a property with an in-law quarters so that his parents could move in. At the time, the decision was made because his mother was having some mobility issues. That has resolved. But, in the meantime, his dad’s Parkinson’s Disease has taken hold and crippled him and is beginning to suffocate those around him.
Over a month ago, Andy’s dad was admitted to the hospital with severe dehydration. He had been sick for weeks and neither he nor his wife were taking care of it. They are fiercely independent and wouldn’t seek medical care for what they thought was a minor illness. He became sicker while hospitalized and then transferred to a skilled care facility for rehabilitation. The goal of rehab is to get him home again.
During his absence, we have begun to learn more and more about Andy’s parents. The facade they have constructed during 60 years of marriage is crumbling and the picture isn’t so pretty anymore. So much energy has been spent on doing the “right” things in public and being the “right” person and not enough energy spent on developing relationships or being at all real. There seems to be no one around them except us. Even their church has no idea what their real struggles are and there are no friends in the congregation at all. The pastor shows up on occasion to visit at the nursing home, but that’s it.
Today the therapist from the nursing home is coming here to see the apartment. Andy’s dad will be here too to try and show her how well he can care for himself at home. Hopefully it involves a walker and a wheelchair. It’s his trial run. I’m sure he’ll put on a great show; I’m not sure she’ll get the real picture.
We’re frustrated and irritated and sometimes angry. We’re sad and confused and often stressed out. We are at a loss for what to do; what would truly be the best thing to do. We know they need more physical on-site care. We also know they won’t allow that yet from anyone outside. So, that leaves us to either drop everything and be here or just go about our lives and watch them struggle with their day because they’re too proud or independent to ask for help. Much of his physical care falls on Andy’s mom. She can’t handle it. She doesn’t want to handle it and she’s made that very clear to her kids but she won’t tell her husband that. So, instead, she does whatever he wants at her own risk.
I struggle with being home for them more. It wouldn’t hurt my kids either if I was here more than at work. But, we’d be financially incapable of maintaining our property or anything else. So, that’s not a choice. Andy has even considered quitting his job to be here; that’s not a viable option either.
So…we’ll see how today’s trial goes. Then we’ll know more about what will happen in the near future. The only thing for sure is that it just won’t be easy. For anyone.
So You Say