Respite stays are a true blessing to caregivers, and can help to restore depleted energy, improve our attitudes, and enhance our ability to be the very best version of ourselves with our patient. As I talked about in my earlier post on making the call to Hospice, they offered me the option for a respite stay – and after discovering how long I’ve been pushing through without a break, my social worker made it clear to me that I really needed to look into this option.
I was able to arrange for a 4 night respite stay at the Hospice care center for my mother over the weekend of July 4th. Given that it was already a 3 day weekend, I took Thursday and Monday off as well to make it a 5 day experience. This was the best thing I have done both for myself and for my girlfriend in a very long time.
Preparation
In the days prior to the respite stay, I would talk to mom several times each day about the coming event. Since telling her I really needed a vacation from my caregiving responsibilities felt a little awkward, I told her I needed to go on a business trip, and that I needed to know she would be safe and well cared for while I was gone. The first few times it was a little distressing for her, but she would agree that she needed someone to take care of her. By the two days prior to respite, she was even asking me on occasion, “When do I go to that place?” Each time, I’d sit and explain to her what was going to happen and when. The night before, I packed the things that she would need and included some comfort items to help her settle in.
Day 1
I took mom to the Hospice care center in the morning, and she took it all well. All the new sights and new people kept her very engaged and we got her settled in her room. After the check-in process was complete, we said our good-byes, I hugged mom and left. She seemed to take it all very well.
Our trip, including gas stops and rest stops was to be just under 8 hours. At first, I was stuck in a loop of concern with how mom would deal with the change, but consoling myself with the understanding that she was safe and in good hands. About halfway through the trip, as we were pulling into a rest stop, I got my first call from Hospice. My mother was distressed and agitated, and apparently giving the hospice staff a real workout. They asked if it was ok to give her an anti-anxiety medication and if I had any other ideas to calm her down. After our talk, again my mind was busy with concern.
As we got deeper into the coastal range, I became absorbed in both the scenery and just in the opportunity to have relaxed conversation for an extended period with my girlfriend. Finally, I started to let go a little. When we finally arrived at our lodging, everything started to change. A sense of relaxed freedom started to set in.
Day 2
This was when it got real. I woke up and had no responsibilities concerning my mother. I didn’t need to clean her up and dress her. I didn’t need to wash her linens or make her breakfast. I didn’t need to watch her in the baby monitor and check on her throughout the day. I didn’t once hear my regular call to action of, “Rod, Rod, Rod, help, help, help!”
What I did do was to enjoy a fine breakfast with my girlfriend and toasted the start of the day with a delightful mimosa. But there was something much bigger going on here that I hadn’t anticipated because I guess I hadn’t given enough thought to just how little we see each other now that my mother’s care needs have grown so much… I was remembering the many reasons why I love this woman.
We stopped for espresso and a thermos of coffee, then we headed out to explore the Olympic peninsula. On this day we found so much… driftwood beaches covered with flat, rounded stones begging to be stacked, lush and dense forests, tourist attractions, and even a couple of towns that were closed to non-residents because of the COVID-19 pandemic. Being turned away at a roadblock in front of the entrance to a town was a new experience for both of us.
I did get a call this day from Hospice. The caller was a volunteer who had come in to sit with mother to help keep her preoccupied and at ease through the day. She asked what sorts of things might engage mom and presented some of her own ideas to get my perspective. She also said that the Hospice team wanted to nominate me for sainthood for my ability to see to my mother’s nearly constant needs all on my own.
This did two things for me. First, it made me laugh… but more importantly, I think, it served as some validation that I really am working as hard as I think I am – and that her requirements really are difficult to keep up with. Too often I’ve wondered if I’m just not bringing enough to the table, but this reassured me that it really is a lot of work to care for mom.
Day 3
By day 3, I was completely present and in the moment with where we were and what we were doing. We spent this day hiking long beaches. seeing historical monuments, visiting local farmer’s markets, and again eating great food while sharing the peace of just being ourselves with no worries weighing us down. We even took the opportunity to meditate on the beach, which is both relaxing and energizing. When we got back to the room, we opened a really nice bottle of wine and sat by the babbling brook that ran by our patio. Oh, and did I mention we started the this day with mimosas, too?
This was the first day I chose not to call mom. The first two times I called her, she immediately started crying and telling me she wanted me to come get her and take her home. But I realized that I was the trigger responsible for this behavior once I spoke to family members who had been visiting and calling her. When they called or visited, she was cheerful and laughing, never crying or expressing a need to go home.
Day 4
In a word… amazing. We went to the Hoh Rain Forest, hiked the trails and reveled in the beautiful experience of the old growth forest. And yes, we weren’t about to miss the opportunity to meditate in a place like that. Even the drive was a wonderful experience. And yes, this day also started with a mimosa (if you could only see how I’m smiling as I write this).
No worries about my mom, she was safe and being well cared for. I just spent my time where I was, enjoying each and every moment to the fullest.
Day 5
Every dream must eventually come to an end, and so we headed towards home first thing in the morning. I realized on the trip back that I had found a few things that I hadn’t quite realized had been lost. Peace. Ease. Appreciation of everything in my life. Appreciation for my girlfriend, Marcie. The wonderful feeling that comes with getting a full night’s sleep.
We made it back, I picked up mom and took her home. She was happy to see me and glad to be on her way home. Much changed when I got her home again, but that’s for another post, for now I just want to share with you how much this short respite changed my world.
The Post Respite Difference
It’s hard to find the right words here, but things feel so much better now. Yes, I have the same, if not more, responsibilities in caring for my mother – but it feels different now. I’ve told some of my family that it’s like I was a pressure cooker near to its maximum pressure, and someone just hit the release valve. I’m sure that pressure will build back up as we go forward, but for now, everything just feels better. I’m more optimistic. I’m more patient. I’m more hopeful.
Being back means not much sleep again, but even after getting around 5 hours of sleep my first night back, I still woke with a smile and kept it going throughout the day. Rather than trying to smile during mom’s sporadic agitation that comes with her dementia, I was actually smiling and feeling good inside and out. Writing this after a demanding week both at home and at work, and again running on insufficient sleep, I’m still smiling and feeling optimistic. The respite stay has made such a difference in the state of my mental health.
In Closing
Remember, Hospice is here to help in so many ways. Respite is possibly the one that has made the biggest impact on my mental state and attitude. Caregiver fatigue is common for many caregivers, if you can take just a few short days – vacation or stay-cation – it can make a huge difference in how you feel. I’m a caregiver, and from what I’ve read, I’m not alone in the fact that I haven’t had a sufficient support network before making the call to Hospice. My mother is currently deteriorating, but she may or may not be in her last six months of life. If Hospice determines that she reaches a point of stability, then we will change over to palliative care – just having a nurse come in to check on her regularly and ensure she’s safe and comfortable. If you’ve been considering calling, my advice is to pick up the phone. Don’t forget that caregivers need to practice self-care not just for themselves, but also for the benefit of the ones we care for.
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