Robert is Back Home!

After nearly two weeks in the hospital and 48 days in a Skilled Nursing facility, Robert is home!

Packing up to leave the SNF

For weeks I wondered if he would be able to come home or even if I could continue to care for him at home.  By the time he went into the hospital on July 1, he couldn’t walk. Heck, he couldn’t even transfer from a wheelchair to the bed.  We were dressing him, cleaning him, brushing his teeth and dealing with days of excessive sleepiness and grogginess.  Not to mention, his extreme crankiness (and mine!). 

I didn’t think I would see the old Robert again and I certainly didn’t think he would walk again. I even came to the realization that continuing to care for him at home was not in the best interest of anyone. (That was a really tough realization and I will write about that more in depth soon.)

Robert started a new medication called Sinemet while he was in the hospital. It is supposed to help with Parkinsonism which is one of his new diagnoses. The goal was to also get Physical and Occupational Therapy while in the SNF.  Upon discharge from the hospital, the goal was to bring him home.

A lofty goal considering he had to be discharged using a gurney because he couldn’t transfer from the bed to a wheelchair.

Robert's last day in the SNF - Excited to come home!

Once settled into the SNF, Robert loved being served meals in bed and watching television. However, he was irritated with the physical therapy staff – at first.  They were making him do things that hurt his muscles or (worse) stopped him in mid-routine of brushing his hair for the third time or shaving for the fifth time. (Some people have trouble getting their caree to bathe or do their own personal grooming. I have the opposite problem – Robert could spend hours on personal grooming if I let him!)

The physical therapy team persisted.  Robert got into their routine and, for the most part, was cooperative and even enthusiastic. We celebrated each milestone from getting out of bed to learning to use a transfer pole to leg exercises and eventually walking with a walker!

There were days he didn’t want to do the exercises but I participated with him one day and suggested they do PT before breakfast since he was already awake and dressed and just waiting around for breakfast to be served.  That seemed to work except on the days when his excessive drowsiness came back to haunt him (the doctor suspects that might be caused from high ammonia levels so we’re keeping an eye on that).

The physical and occupational therapists came to know Robert and worked around his drowsiness and his occasional reluctance.  They commented on how polite he was and how hard he was working.

The combination of Sinemet, the PT and OT and Robert’s own persistence has worked miracles. 

Robert walking again!

My hope was to get Robert back to where he was in June – using a wheelchair and being able to transfer without us having to lift him. Then I knew he could come home.

He has exceeded those hopes and blown them out of the water! He is walking with a walker but we’re using a wheelchair for long distance as he still gets tired easily. He is dressing himself – including those difficult socks! He is brushing his teeth by himself and is not nearly as sleepy. He actually moves quicker and is staying awake and alert throughout the day. Robert is cooperative and pleasant and is continually surprising us with his progress.

Robert is happier than I have seen him in a very long time. He is grateful to be home. He said he liked the SNF but he likes being home “a lot more.”

Robert was happy to see all three dogs (yes, even Taz!) and said they were all “good dogs.”

Robert's first meal back home: Cheeseburger & shake --
and a little bit of Rocky Road ice cream

Robert told me and Richard on his first night at home, “It is a very happy day to be back home.”

Robert is back – not just back home but back to himself and that makes for a very happy day indeed. 

The reality is that Robert will continue to need physical therapy and for us to help him with “cues” so he doesn’t slip back into old habits. He will need to continue to be monitored to see if the Sinemet needs any adjustment. We still know with all of Robert’s diagnoses, there is no “cure” and we will see a steady decline but we have reset the starting point. We have drastically shifted where we were just a few months ago. 

Even though there is no cure and the reality is that the future holds a decline and probable hospitalizations, the moment right now is what we are celebrating. And if there’s one thing Robert has taught me, it is to appreciate the moments.

The future cannot take this moment from us.

#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.

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.

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.