Self-Care Deprived

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:

photo (1) (479x640)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 for 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 doctors 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’s appointment and not take the transport van.

I finally had the time and energy to catch up with my favorite online caregiving community (yes, this one!). 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 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.

[also published at]

Profile photo of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

10 thoughts on “Self-Care Deprived

    • Profile photo of TrishTrish Post author

      It is so difficult! I hope I don’t fall back into the routine of putting my self-care aside when Robert returns home. It’s very difficult not to when the decline and changes happen so quickly. All we can do is take advantage of the moments when we can give ourselves a little self-care. Hope you find time for a little #mycare! :-)

  1. Profile photo of janjan

    “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.” That is brilliant. Love it. So glad you could hang in there until the posse showed up. Oh, wait, you’re the posse.

    • Profile photo of TrishTrish Post author

      Wow, Jan, anytime someone calls me brilliant – well, let’s just say I’ll need to add that to my list of self-care items that need to happen more often! LOL! We are all the posse aren’t we? Happy to be in this posse around here! :-)

  2. Profile photo of PegiPegi

    So happy to hear you’re taking some time for yourself. Your care and advocacy for Robert is inspirational. Enjoy the moment.

    • Profile photo of TrishTrish Post author

      Thank you, Pegi. You know the inspiration is admirable. You are a miracle-maker! I want to hear what your self-care plans are. <3

  3. michelle bracken

    Thank you. I, too have been telling myself that I shouldn’t be tired because I have more help than many family caregivers. Thank you for reminding me that ‘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’.

    • Profile photo of TrishTrish Post author

      Michelle, Isn’t that hard to do? I am more critical of myself and what I “should” do than I ever would be of anyone else. Let’s keep reminding each other that it’s to feel whatever we feel. This is exhausting work! Take care.

      • michelle bracken

        Yes Trish, we have to keep reminding each other and you’re right. It is exhausting work, physically, mentally, emotionally, and sometimes even spiritually.
        Take care (self care, that is)


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