I realized I was self-care deprived the day after Robert was
released from the hospital and temporarily placed in a Skilled Nursing
Facility. It was a Saturday and my to-do list looked like this:
%2B(479x640).jpg)
Hmmm, I’m seeing a theme in this list.
I didn’t get everything done on that list the first weekend
but I had an immediate and overwhelming sense of panic to get it all done
before Robert returned home.
Obviously, I hadn’t been taking care of myself.
I didn’t recognize this while Robert was home. I was doing
my best to just keep up with his care since his needs changed (and grew) daily.
Robert declined – slowly at first – then picked up speed and things just kind
of fell apart and he landed in the hospital. He left with a couple of new
diagnoses and the knowledge that he would need physical therapy the rest of his
life and he would continue to decline. Hopefully, with physical therapy and a new
medication the decline will slow down.
Robert has been in the SNF for a month now. It is taking me most of that time to unwind
and allow myself to relax. Robert had several doctor’s appointments just after
being transferred to the SNF since we were still investigating his swallow
function. I visited three times a day at first but it eventually dwindled to
twice a day. I even allowed myself a
single visit in a day every now and then.
I knew this initial rush to pamper myself was to refill my “bucket”
but I began to think this bucket of mine was a bottomless pit. I still felt
tired – no, exhausted. Actually, that’s not even the right word – it’s weary.
I felt weary.
My mind swirled with doubts about what I could do in the
future. Maybe I can’t take care of
Robert at home. Maybe having him live in
a Skilled Nursing Facility is for the best for all of us. I was consumed with
this decision, thinking about pros and cons and changing my mind 50 times a
day. In one minute I would convince myself that having him home is, of course,
for the best and that we can manage. In the next minute, I was sure Robert
would be happy where he is. He isn’t asking to come home, he is enjoying being
served meals (sometimes in bed!) and he enthusiastically tells me about going
to the gym or the Boardroom (which is a place at his Day Program but I think in
his mind is a blanket term for an activity room).
From day one, while refilling my bucket, I grappled with
this decision. My best friend repeatedly reminded me that a decision doesn’t
need to be made just yet. Wait, she said. See how he does. See how you do.
I continued to engage in manic self-care. I got another
massage which I understand sounds incredibly self-indulgent but I pay for
monthly massages and they’ve piled up. I
now have 13 massage credits in my “bank.”
And that’s after using a couple recently.
My intention to take care of myself while caring for Robert
fell far short of what is necessary for my mental health.
In the midst of Robert’s decline and subsequent
hospitalization, we have been trying to sell our house. We had a couple of
offers that fell through. My mind went in circles again deciding if we should
sell. Maybe the offer falling through
was a sign we shouldn’t sell. If Robert isn’t coming home, then we don’t need
to sell just yet.
Richard and I watched movies and ate dinner later than 5:30
in the afternoon and planned a trip to the coast for a few days.
Walking on a beach, seeing otters (or seals – I can never
tell the difference), smelling the crispness of the ocean air and wearing a
favorite sweater in the cool of the morning air will refill my bucket more than
I have found possible in a very long time.
The trip is planned for the end of next week.
Over the weeks, my brain started to work again. I had more
energy and was able to tackle tedious, back-burner projects at work that I had
let languish. I worked more hours and accomplished even more.
I finally had energy to clean my house.
In the meantime, I saw Robert making progress. I participated in a morning of physical
therapy with him which had us both laughing. Robert used the wheelchair most of
the time but he was actually able to walk across a room using a walker.
Robert is getting around better than he has in months. He is
able to transfer (with assistance) from the wheelchair to the bed or toilet. I
was even able to get him into the car for a doctor appointment and not take the
transport van.
I finally had the time and energy to catch up with my
favorite online caregiving community (CareGiving.com). I was interested in
looking at one-story houses again and we did a few more things to our house to
make it attractive to buyers. I did necessary maintenance on my car that I had
been putting off (well, I took it in to have it done).
Robert continues to make progress and Richard and I talked
about the future with Robert. We decided we will bring him home and care for
him as long as we can but I now know that it will be okay if he eventually has
to live in a long-term care facility. It helps that Robert is enjoying his time
there and not asking to come home.
Now that I know what self-care deprivation feels like I hope
I can recognize it in the future. It’s interesting that I was in such a state
considering we had a wonderful respite last November and Robert does go to a
Day Program through the week. I think I made things worse by telling myself
that I “shouldn’t” be tired because Robert isn’t as bad off as others or other
people have more responsibilities than I do.
There is no room for comparing in caregiving. We all have
different experiences and lives and tolerance levels. There are no wrong decisions.
There is no judgment.
We are all doing the very best we can.
I surprised myself because I didn’t feel guilty about
indulging in self-care. Actually,
indulging is the wrong word. My self-care was necessary – not an indulgence.
For a second I felt guilty for not feeling guilty but then I
realized I was the most neurotic person I know, laughed at my crazy self and
set that aside.
I hope by sharing about my own self-care deprivation others
will allow themselves a moment or two of guilt-free self-care.
To encourage you to do so, Denise Brown, founder of
CareGiving.com, and I are co-hosting a #mycare event. Let’s share a picture of
how we care for ourselves on Twitter, Facebook and Instagram and be sure to use
the hashtag #mycare. Denise and I will pick five winners who will get an “I
Care” t-shirt and a $25 Visa gift certificate to use however you wish. The contest begins today and winners will be
picked on August 19.
Caring for others is important but caring for ourselves is
important too.
Lesson learned.
