Wednesday, August 20, 2014

#mycare Contest Winners!

What a fun week! 

After my realization that I was self-care deprived, Denise Brown of CareGiving.com and I launched this self-care challenge:

Take care of yourself, take a picture of it, post it on social media using #mycare for a chance to win a prize! The prizes of an “I Care” t-shirt and a $25 Visa gift card were just an added bonus because the real fun was taking care of ourselves as we care for others. 

We picked five winners from the entries posted on Facebook, Twitter and Instagram but from the looks of the pictures, we all won. How much fun was it doing something for ourselves (if even for a minute or two)?  I found myself recognizing activities or moments that are part of my every day that really count as #mycare.

I may have personally started off by fulfilling my self-care with pedicures, manicures and massages but what I realized is I can have a moment or two of #mycare in my backyard with my dogs or lunch on the patio with my husband:









Our winners found #mycare with a home pedicure, gardening, time with friends, a delicious indulgence and a box of chocolates. 

Congratulations to Pegi, Richard, Pear Lady, Y Diaz and Chrisanta!  (Please PM me with your contact info and I will get your prizes out to you). 

















Even though the contest has ended, I am going to continue to take care of myself while caring for Robert (and sometimes Richard). I am going to recognize and be more grateful for those snippets of time that can refill my bucket. 

I don’t want to get in that place of forgetting how to care for myself. Of doing things that make me happy and that rejuvenate my spirit. I am going to remember that caring for me is as important as caring for others. 

I can no longer think of self-care as an indulgence – it is a necessity. Let’s help each other remember that.


Tuesday, August 12, 2014

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:


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.

Monday, August 4, 2014

The Caregiving Creep

Six years ago my girls were in their second year of college and had, for the most part, moved out of the house. At least one of them came home on the weekends (or for a day here or there) and Richard and I still had our son living at home but he split his time between our house and his mom’s.  It was a slow introduction into our Empty Nest.

Which was fine by me since I loved a household full of kids and their friends with their delightful laughter and energy and love of life.

I wasn’t a fan of the messes but at least two of the three cleaned up after themselves (yes, Christopher, I’m talking to you).

It was also a time I decided to make more of an effort to keep in contact with Robert. He lived with a companion in a city 90 minutes away but I was not very regular with my phone calls or visits. Our dad (who lived in the same town as Robert) would bring Robert and his companion, Judy, to visit for birthday parties or holidays.

I was better at keeping in touch with Other Brother. He and his wife were raising two kids but we kept in touch on a much more regular basis.  It probably had a lot to do with how easy it was to communicate with Other Brother.

Robert didn’t use a computer or a cell phone so a quick email or text was out of the question. Whenever I called him, his television was on so loud he asked me to repeat everything I said. Judy (who also has epilepsy and cognitive impairment) was in the background yelling for Robert to tell me one thing or another.

After the initial greetings and catching up (which took all of five to ten minutes), Robert fell silent and I could tell I was competing with the television for his attention.  Sometimes it was because he had a seizure but most of the time he wanted to watch his shows.

That’s okay. I felt good that I had called.  “Call Robert.”  I could check that off of my list for the week.

When Christopher had a football game in Robert’s town, I thought it was a perfect opportunity to visit with Robert and involve him in his nephew’s activities. I invited Robert and Judy to the football game, arranged a time to pick them up and was excited about multi-tasking: I could see Robert and Christopher’s football game all in one swoop.

Richard and I arrived at Robert and Judy’s house and Judy answered the door with her shirt covered in what I thought was blood.  I immediately assumed one of them had cut themselves during a seizure and there was an enormous amount of blood.  Judy is standing in front of me and doesn’t seem to be woozy from a loss of blood but Robert is nowhere to be seen.

“Is Robert okay?”

“ROBERT  - YOUR SISTER IS HERE!”

Robert comes around the corner with a huge grin and is ready to go. He gives Judy a kiss goodbye and walks out the door.

Um . . . what about all the blood??!!

I look behind Robert and ask Judy if she’s okay and awkwardly ask what happened to her shirt.

“Oh, I was making spaghetti and the sauce spilled on my shirt.” 

Ahhhh.  Well, that’s a relief.  Although, given the track record of these two, I’m not convinced she didn’t spill the sauce on her while it was still hot.  She looks and sounds fine, though, so I ask her if she’s coming with us but she decides to stay home.

While walking to the stadium from the parking lot, I notice Robert has his arm wrapped in a bandage and is pretty wobbly.  I hold on to his arm to help steady him and assume it’s because the parking lot is gravel.

Once we get to the stands, Richard spots an empty space on the bench on the 50 yard line and a few rows back.  Perfect seats.

I follow Richard up the stairs to sit with Robert following behind me and I turn around to see Robert struggling to walk up the stairs (there are no guardrails to hang on to) and then fall forward before I could catch him. Oh goodness!  What is going on with him?

Richard sees what’s going on and we move down a few rows so Robert doesn’t have to maneuver the stairs.  The football game commenced and we screamed and yelled (and may have rang a cowbell or two) and watched Christopher’s team be demolished by boys twice as big as Christopher.  I didn’t realize they were playing a professional football team! (It looked like it anyway).   

That’s okay, we all had a great time.

Robert was just as wobbly going back to the car and I asked about the bandage on his arm. He gave a vague explanation about it being hurt and I didn’t ask any more questions about it.

A couple of months after that football game, my concern for Robert was ramping up. He arrived for Thanksgiving dinner with a black eye.  Other Brother and I took care of that situation and I called County Services to see if Robert qualified for in-home help. (When they showed up, Judy and Robert told them they didn’t need help.) 

By December, Robert had developed a life-threatening infection and I was taking him to doctor’s appointments and he ended up in the hospital then back home again by New Year’s Eve.

Richard and I treated ourselves to dinner and a nice hotel on New Year’s Eve but called Robert to see how he was feeling. He said he was doing great.  I relaxed a bit.

By January, we were going to doctor appointments again about his recurring infection and I was in contact with his UCSF neurologist. “Gosh, I wish we had known about you before now,” they told me. “Robert has been missing doctor appointments here and there for about six months and we’re concerned about him.”

The time to step in and be a caregiver is never crystal clear.  I struggled with guilt over stepping in too late for a long time but now think I stepped in just when I needed to.

Robert had emergency surgery in January to stop an infection that was spreading to his brain. He needed several weeks of antibiotics and his doctor didn’t recommend he return home to independent living. 

There was a Skilled Nursing Facility stay after that, then assisted living and then a Board and Care home.

When I took Robert to that football game, I never imagined Robert would be living with us eventually.  We have a two story home, no bedroom on the first floor and do not have a full bathroom on the first floor either. Richard has his own chronic pain issues. I have a full-time job and we have a houseful of dogs, cats and turtles to care for. 

I never imagined having caregiving supplies or equipment in my house. Now we have a walker, a wheelchair, a transport chair, an oxygen tank and a cabinet full of briefs and bed pads.

I never imagined being able to do some of things I am doing. Now I can converse intelligently with the doctors about blood pressure, pulse and oxygen rate and seizures and cognition. I clean up things I never thought I could without being squeamish. I report on the color and consistency of bodily fluids with the matter-of-fact tone of voice usually only heard in nurses (or caregivers).

Caregiving sometimes is immediate (as with a tragic accident happening to a loved one) and sometimes it creeps up on you.

Robert is back in a Skilled Nursing Facility for now regaining some ability to walk.  I have to admit I don’t know how much longer he will be able to live with us, given his decline and the increased physical demands, but caregiving will always be a part of who I am and what I do for Robert. 

And it’s something that wasn’t even on my checklist. 


Saturday, July 19, 2014

Welcome Back, Robert

Sometimes there aren't any good decisions in caregiving. 

Mail call! A card and bookmark from Carol
Decision number one: Do we send Robert to the hospital?

Robert couldn’t walk.  I mean he couldn’t even turn his legs to transfer from getting out of bed to the wheelchair. I could see him thinking about it.  I could see that he really was trying to get his brain to tell his leg to MOVE! but the signals got crossed and he just couldn’t do it.  

I called his neurologist who had just seen him the previous week and explained that his decline was even worse than before.  Since they had suspected a compression of the nerves in his neck, I was advised to send Robert to the hospital.  It seemed to be the quickest way to get the MRI done in order to confirm that diagnosis and if it didn’t confirm it, to figure out what exactly was going on.

We all know how that went.

Every time Robert goes to the hospital there is a significant decline afterwards and a significant amount of work involved in getting back to baseline.  Usually he falls just short of baseline so we end up with a new baseline.

I don’t take sending Robert to the hospital lightly. Partly because I am selfish and realize the post-hospital decline not only affects Robert but me and Richard too.  (There has to be honesty and self-awareness in caregiving. It helps.)

Robert couldn’t walk so there really wasn’t a choice for me.  My concern was if there was a spine compression and he was losing mobility so quickly, what more could happen?  He needed answers as soon as possible so the paramedics were called and the ER wait ensued.
A wonderful surprise from a Guardian Angel!

Decision number two:  Do we take Robert home or find a rehab facility that provides physical therapy?

Um, he’s been in a hospital bed for over a week and couldn’t walk when he arrived.  I’m pretty sure he still can’t walk and has now lost muscle strength.

Richard and I were already past the point of being able to care for Robert.  The decline happened so suddenly (or felt like it) that we just did what we could to keep up.  Sometimes even to our own detriment.  Like the time Richard physically lifted Robert from the wheelchair and moved him to the bed (and then suffered through extra back pain for several days). 

Let’s go with a rehab facility.

(It helped tremendously that Robert was completely agreeable to this plan. Many times when making caregiving decisions, the caree and caregiver are at odds at what would be best.  That makes the decision-making even more difficult.  It’s just the worst.)

Decision number three: Which rehab facility do we use?

Our first option for Robert was to get him in the hospital in-patient rehab center. I was told some of the new doctors/residents don't even know about it.

Even though many of the nurses and a couple of the doctors and physical therapists raved about this in-patient rehab center they all warned me that Robert would have to be evaluated by a team and they would be the ones to decide if he could be admitted there. 

If he was accepted it would be so easy!  The hospital would discharge Robert and then wheel him to the rehab center (which was in the hospital but not considered part of the hospital). He would get checked in and they would do 3 – 4 hours of rehab per day!  Wow! 

The goal would definitely be to get Robert able to move and transfer so he could come home.

It felt like an exclusive, secret club and I wanted entrance granted for Robert. Please, please, please!

One doctor evaluated Robert.

Then he came back with another one.

They asked Robert questions, then asked me questions.  Dang it – I don’t even know what they are looking for so am stressed out about giving the “right” answers.  Plus I didn’t have time to study!!!

After a while I realized they were not going to accept Robert into the program. Wait – I want to change some of my answers!  “He probably won’t be able to meet the goals we set each week.” Could you please just try him out to see?  Maybe he’ll surprise you! 

In my heart, I knew Robert couldn’t tolerate 3 – 4 hours of physical and occupational therapy. I mean, his favorite time at Day Program is when it’s Recliner Day.

This now means we have to scramble to find a rehab facility.  The discharge planner helps with this and sometimes you get a really great discharge planner who goes the extra mile and sometimes you get one who just does things by the book. 

The entire hospital stay has been challenging so it did not surprise me that the discharge process was not smooth. I expected it to be smooth because I usually have a terrific experience at discharge but not this time.

The discharge planner gave me several options for Skilled Nursing Facilities that have physical therapy programs to accommodate Robert.  I asked her which ones she would recommend. She couldn’t say. 

Okay, give me a hint. Sounds like? 

Instead, she asked me if I had a particular one in mind. 

No! I’m asking you for help to find a good one.  She did help by sending out an email to all SNFs, giving Robert’s info and asking if anyone had availability. She referred me to the www.medicare.gov site so I could check ratings. It was some help but it wasn’t anything extra. 

This would have been a good time to have someone doing something extra.  I was frustrated. It had been a long two weeks (or close to it) and I just wanted someone to make this decision easy for me.

That wasn’t to be so I got on the phone and called a few facilities.  I contacted Robert’s Day Program for references.  I called Robert’s case manager at his Regional Center. I checked ratings, checked availability and checked what the PT schedule would be. The last thing I want is to choose a place that is going to just let him lie in bed all day and do 10 minutes of physical therapy on occasion.

After all of this, the place I settled on is a place Robert has lived before. When I first moved Robert to Sacramento, he went to a SNF for about two months then I moved him into a Residential Care Facility for the Elderly.  He was there on a waiver and under an exemption (since he is in his forties).  Robert lived there for a couple of years and enjoyed it until we ran into some problems with the management and it was apparent that Robert and the facility were not the right fit for each other any longer. 

It was not easy choosing this facility but I knew he would be in the SNF portion of the facility and not the Assisted Living area.  I knew that management had changed since Robert last lived there (a few times, actually). I hoped that the familiarity of it would somehow aid Robert in regaining mobility.

I even thought the Universe was trying to tell me something.  The SNF had an available male bed; the PT department was stellar and could work with Robert two hours a day for 5 – 6 days a week (which seems doable for Robert); the location was halfway between home and work and there was a bit of comfort in going to a familiar place. 

Robert was on board with whatever place I chose.  He told me he remembered this place but I’m not sure he does. 

Once we arrived, I didn’t recognize anyone but the intake social worker remembered Robert. Robert said he remembered him too. Who knows if he really did but it makes me feel better that Robert at least thinks he remembers this place (and fondly).

Robert happily settled in while I pushed away the thought that if this doesn’t work out I have no one but myself to blame.  After all, I know the problems we had here before but I am optimistic the Universe knows a thing or two about what is best.

Decision number four: Having faith in the caregiving decisions I have made. 

Working on it.