by Pat Carbonell
Okay, so I ripped off the title from a series they're doing on NBC News this week, but it's a good title for this topic: taking care of one's elderly parents. I've been up to my eyeballs in this topic for the past six weeks in my family, so I'm inviting you along for the ride.
Brief synopsis: My mother is 80. She's had degenerative osteoarthritis in her spine for 50 years - ate a lot of Excedrin so she could keep going. She retired at 65 after a career as a nurse, quit smoking and proceeded to keep house for herself, me and my (our) daughter. We've been together for 21 years now, so she's Jo's other parent. I'm the Dad for the house.
Summer 2001: 2 heart attacks and a triple bypass. Fall 2001: mild brain stem stroke. Winter 2001: pneumonia. Jo came home and started taking care of her grandmother while I worked full time. Mom named me her agent under a Durable Power of Attorney for Health Care Decisions, which means that if she can't answer, I do.
2002: Mom started going blind. Summer 2002: stent surgery to stabilize a major aortic aneurism in her belly plus a graft on her right femoral artery.
2003: Mom fell on top of her walker, broke her collarbone. Now a fall risk, got bed rails to keep her from walking around by herself. Diagnosed with mixed dementia.
2004: pretty quiet. The blindness progressed, along with the dementia.
May 2005: Mom fell getting into the car at my sister's house, wrenched her knee and concussed herself on the driveway. A week after the fall she told me she was never getting out of her bed again. I called my oldest sister in Georgia and asked her to come help for a couple of weeks. Mom asked her to stay. She's still here.
2006: also pretty quiet, except for the stress of having our home taken over by my sister, and my getting laid off in July.
Which brings us to 2007.
Mom was scheduled for surgery Jan. 3, to clean out an infection around her graft. Knowing the risks of anestheshia, I sat down with her and went over her final instructions and bequests. Mom doesn't have any property or anything like that. This was what did she want for her funeral and who gets the salt & pepper shaker collection. It's just a hand-written document, but she signed it and I witnessed it, so it's good for the family. It'll never have to go to Probate.
But she came through the surgery great. So great that she was sent home two days later, which kind of struck us as a bit fast, but her doctor explained that Medicare rules were that as soon as she met Medicare's discharge conditions, she had to be discharged or Medicare wouldn't pay for any part of her stay. Nice to know how little our doctors have to say about things these days. We got to transport her 90 minutes in the back seat of my Ford Escort with a six inch open wound in her groin. Great!
Then came three weeks of recovery. The surgical wound healed fine, but Mom's mental state was not doing great - real confused, depressed, crying, more word-loss from the dementia. Plus she was nauseous from the antibiotics so she wasn't eating worth a damn. She lost 15 pounds in that month.
January 31st she woke up with mumbled rambling speech, could barely walk, and couldn't feed herself breakfast. Lynne (my sister) and I figured she'd had a stroke and called the ambulance. We were right.
In the emergency room her doctor asked us what her living will said. I winged it, and then went home and pulled the originals. Then I went back and told her nurse exactly what they meant: she would accept an IV for liquids and a feeding tube for food, but if she stopped breathing or her heart stopped, let her go. No machines, no shock paddles, nada. Mom had seen them do all that to my Dad 30 years ago, and didn't want it for herself. And as her agent, it was up to me to make those instructions clear.
Sitting alone with her in the E.R., I told her that if she was ready to go, it was okay. Jo and I would be okay. She could join Dad if she was ready.
But she isn't ready. She rallied and the stroke damage disappeared within a couple of days. Her doctor was really concerned about her weight loss and loss of strength, so we decided that she should go into a nursing home rehab center for a few weeks.
I get a laugh out of the people who think this is going to be a break for us, her caregivers. Nursing homes are fine for two types of the elderly: those who are so out of it they don't know or care where they are and just want to sit and vegetate, and those who have physical limitations but are mentally sharp enough to do as much as they can for themselves and know how to ask for help with the rest. Mom is neither of those. She's almost totally blind now, so something as simple as finding the call bell is a challenge for her, plus with the dementia (Alzheimer's) she forgets that she needs to push the bell for help. She yells, instead. Or sits and does nothing. She cries. I've been called at 7:30 am because she wanted to know why I wasn't there when she woke up. We're spending, on average, between the three of us, seven to ten hours a day up there with her, keeping her company and keeping her calm.
Don't get me wrong, it's a good facility, and the staff are very caring. It's just that she's used to being in her home, where all she needs to do is call one of our names and someone's there to see to her. She's not independant enough for the nursing home.
So we're going to see how much weight she's gained by the end of this week, and how she's doing on her walking. If she's made enough progress, we're going to ask her doctor to send her home.
Maybe then our lives can get back to normal for awhile.
It's kind of crazy, dealing with family during times like this. The sister who doesn't live with us thinks that we should put Mom in the nursing home permanently, so Jo and I can get on with our lives... except that Mom is a big part of our lives, and we promised her that as long as we could care for her, we would keep her in her home. It's not like I have a husband and/or a career that I'm putting on hold to do this - I don't.
My brother, and a good friend, have both asked me what I'm going to do after she dies - what's my plan. Yeesh. I'll deal with it when it gets here. She could die tomorrow, she could last another five years. I don't know. I'll keep working to pay the bills and feed the cats and go from there.
I'd love to get my business up and running this year, which kind of depends on me getting a real job and some money coming in. I plan to do the Farmers' Market again this year. I have these things in the works, but they're not A PLAN.
One of my favorite quotes of all time is "Life is what happens while you're making other plans." So I don't make many plans, 'cause life's going to happen without them.
Wow. So, the moral of the story is that as your parents age, you need to be ready to face the hard choices. You need to be prepared to be strong. You need to brace yourself for making choices out of love and caring - what's right and best for them. Sometimes that's fighting for their right to die with dignity. Sometimes it's fighting for their right to come home. Sometimes it's recognizing that you can't care for them and it's time for them to go somewhere where they can be cared for. You'll go through a very long, drawn out period of grief as you watch them decline, and watch the parent you love slowly disappear. You'll find yourself praying for a peaceful end, and be ashamed that you ever thought that.
And then you'll get up the following day, and do it all again.
Peace. Blessed Be.
Do do a great job of writing about family. You know what's important... thanks.
Posted by: Dan | February 16, 2007 7:53 AM
Dan - thank you. I know that writing and reading stuff like this isn't "fun", but it's real. I appreciate the fact that you're still with me.
Posted by: Pat | February 16, 2007 12:33 PM
Nicely done, my dear friend.
Posted by: Jenn | February 21, 2007 9:12 AM