As I drove along the highway, I noticed it was what my mom likes to call, "A blue, white and green day." That epitomizes Florida to her.
Vibrant blue sky. White puffy clouds. Luscious green foliage.
My dad had spent nearly 12 years here living out his retirement dream. Home in a golf community. His own cart. A weekly game with a group of friends. Just as he had always pictured.
A call from my mom yesterday morning revealed he had been refusing food and drink for days. The staff has stopped trying to get him to go to the dining room. Instead, they bring his meals to his room and sit with him, trying to get him to eat. To no avail.
Mom went the night before, taking food and reserving the facility's private dining room. He would not eat, telling her, "I am dead."
Hubby, my daughter and I visited dad together last weekend. He had been in good spirits. It was hard to believe he had declined so quickly. I wanted to see for myself. I felt an incredible sense of dread.
When I opened the door to his room, he was sitting in the chair by the window in his pajamas. He didn't look as bad as I had feared he might. He was unkempt. Frail. But he did not look like a man on death's door.
Any relief on my part was short lived. He looked up at me with a blank expression on his face. And I realized; he didn't know who I was.
There was no smile. No, "Hi, Boo Boo!" He didn't try to rise to greet me with a hug. He just looked at me, vacant. The strangest part was, he didn't even seem as if he was trying to figure out who I was.
It stopped me in my tracks. I wasn't sure what to do. But, I wanted to be able to spend time with him. I don't know how much more time we have. So I stepped in to the room.
"How are you today?" I asked, forcing a smile.
"I'm just fine, thank you," he answered, as if making small talk with a stranger on the street. "How are you?"
"Well, I'm a bit concerned. I hear you haven't been eating."
"I'm eating a little."
"That's not what I hear. I was told you are not eating at all." I sat down on the edge of his bed. "Are you drinking anything?"
And that's when he got a look on his face like he was searching. He clearly didn't understand the question and looked at me, confused. It was as if he didn't know what drinking was.
I pulled a bottle of water out of my purse, took off the lid and handed the bottle to him.
"I'd love for you to drink this," I told him.
He held it up to his mouth and drank.
I asked if I could pick up any food and bring it back for him. If there was something in particular he'd like to have. He said no. I offered to take him to a restaurant of his choice for a meal. He declined.
I looked around the room. The TV was on. The movie Tin Cup had just started.
"This is a good movie," he said, noticing I was looking at the TV screen.
"It is. I haven't seen it in a long time. May I watch with you?"
We sat for a while in silence. It was awkward. The first time in my entire life I have ever felt awkward around my father. Several times I found him looking at me, questioning. His eyes said, "Who are you? Why are you here?" But his mouth did not open.
He began to behave as if my presence made him uncomfortable, shifting often in his chair and fidgeting with his pajamas. His affect was becoming agitated.
I didn't want to end the visit; I wanted to stay with him. I couldn't stand the thought of having to say, "Goodbye." And then, suddenly...
"What's new, kiddo?"
He was back.
I smiled for real and told him about my latest writing projects. My daughter's last week of summer camp. Our back-to-school shopping excursion. Showed him the latest photos and videos on my phone.
He picked up a book and said, "Look what your mom got me." It was a collection of The New Yorker cartoons, all about golf. We looked through them and enjoyed a few laughs.
Then I leaned over, placing my hand on his arm and looking him in the eye as I asked bluntly, "Are you trying to check out on me?"
This time, his face did not register any confusion. His eyes told me he knew exactly what I was asking. Mine began to fill with tears, and I had to look away, afraid of what his answer might be.
"No," he said softly.
I looked back at him. "Then you have to eat. Your body needs food."
"OK. I'll have dinner tonight."
"Do you promise me you will eat dinner?"
I squeezed his arm and leaned back. After some time he said, "I wish I could go home."
"I know you do. We all do. This is not what any of us want."
"It just is what it is."
"I've been here for a very long time."
"You moved here in April, and it is August now."
He looked bewildered. He held his fingers up, as if trying to count. Then I watched as a wild anger flashed through his eyes. His fingers clenched into fists.
"NO!" he screamed.
"OK," I replied calmly.
We sat and watched the remainder of the movie, engaging in mundane chit chat. He tried to stand as I was leaving, but required assistance in order to do so. We hugged and exchanged I love yous. And I wondered, will I have the chance to say it again?
This post originally appeared at The Writer Revived. It is part of a series I will be sharing here concerning my family's journey with dementia, and how it impacted my parenting. My father passed away March 10, 2014.
Talking with other people who face the same daily challenges can help caregivers manage stress. Specific types of support groups can vary on a community-by-community basis; check out this Caregiver.com guide to find the right program for you.
Caregivers have their hands full and may not have the time to meet with an in-person support group. In that case, an online support group can be a great alternative.
Support groups not your thing? You can see what other people are saying about caregiving by just checking out a simple message board, such as this one sponsored by AARP..
You may need to attend an event or simply seek a few hours for some much-needed rest. Eldercare.net offers a Search For Respite Tool or Eldercare Locator where you can find professional help. Also check out this guide from caring.com for more respite-care ideas.
Does your loved one need transportation to go buy food or go shopping? There are numerous van and shuttle services specifically for seniors. Contact your local Area Agency On Aging for one near you.
Don't have time to shop and cook? Consider a service that will deliver gourmet meals to your home, no matter where you live. For low-income seniors in need, AssistGuide Information Services offers a directory of food services available.
During the 2009 economic downturn, 1 in 5 family caregivers said their finances were so strained that they were forced to move into the same home with their aging loved ones to reduce expenses, according to a survey by caregiving.org. Some 47 percent of working caregivers indicate that an increase in caregiving expenses caused them to use up all or most of their savings. The Many Strong Support Network has a fundraising tool which allows other people to anonymously donate funds to people who are under financial strain.
If ever you have a question about resources, or need support at a moment's notice, AARP's caregiving support line is available at 1-877-333-5885, Monday through Friday, 9 a.m. to 5 p.m. Senior care advisors for Care.com, also provide free counseling for caregivers, and help them map out the best course of care for their loved ones.
Organized caregiver co-ops can provide an affordable way to coordinate care for your loved ones. Check with local community centers or this Adult Day Care Directory to see if someone in your area has already started one.
Care.com's Senior Care Directory can set you up with a housekeeper, errand runner, pet sitter, or whatever you need to make the caregiving experience a little more manageable.
According to author of "The Medical Day Planner", Tory Zellick, hospital social workers are a great resource for all caregivers. "[Hospital social workers] are always armed with information for your community," said Zellick.
Websites like Lotsahelpinghands have caregiving communities that connect volunteers with caregivers in need of support or help.
Family gatherings offer a great opportunity to discuss the future of loved one you care for, says Dr. Bruce Chernof, president and CEO of The SCAN Foundation. The group offers a guide -- "10 Conversations To Plan For Aging With Dignity And Independence" -- to lay the groundwork for these critical discussions.
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