Sunday, September 7, 2014
Robert turned 49 years old on Saturday, September 6. Woohoo! Happy Birthday, Robert!
Richard took a birthday cake to program when he dropped off Robert on Friday morning. I had forgotten to tell program that we were doing this but they know me by now and are not going to turn away cake!
I wondered all day how the party went so after work on Friday, I asked Robert about it. He’s a man of few words so the conversation went a little like this:
How was program today?
Robert (smiling): It was EXCELLENT.
Did you have your birthday party?
Robert (smiling): Yes, we did!
How was the party?
Robert (with a huge smile): It was GREAT!
Did everyone sing happy birthday to you?
Robert (grinning from ear to ear): Yes, they did!
Did you guys eat cake?
Robert (still smiling): Yes, we did!
Was it good?
Robert (still smiling): It was DELICIOUS!
I think he was happy!
We let Robert sleep in a little bit on Saturday since I knew he would be up late with his family birthday party happening later in the day. Once he woke up, Richard and I told him happy birthday! Robert responded with a “thank you” and “today is my actual birthday.”
Yes it is!
Richard and I spent the day cleaning the house and running errands to get everything ready for the family party. Robert relaxed watching Family Feud and working on his word search books. Every now and then, Robert would tell us, “Today is my birthday!”
We responded, “Yes, it is! Happy birthday, Robert!”
Robert was so excited about his birthday that he must have repeated this 20 times throughout the day.
By chance, I saw San Francisco 49er football plates and napkins at the store and since Robert loves the 49ers, I thought we’d have a 49er themed party. Richard saw them and immediately made a connection of Robert turning 49 and having a 49er party! Sounds good to me and Robert loved it!
We had four dogs and nine people, sometimes all in our tiny kitchen! The laughs were just what this house needed after months of worry and decline and mood swings. (Robert’s mood has improved greatly since his medications were adjusted and he is able to walk again. It’s amazing what a difference attitude makes in everything!)
Richard grilled corn on the cob and cheeseburgers - real ones for Robert and most of our guests and veggie burgers for us and Rachel.
Robert read all the cards after dinner and opened his gifts. He even won $15 on a lottery ticket he got as a present! Chocolate cake and Rocky Road ice cream came next and Robert was in heaven (and will be for a while because we have a lot of cake and ice cream left over!).
Fitting for the 49er themed party, Other Brother gave Robert a 49er cap to match his own. It was delightful to see the two of them together in matching caps!
The day was also the 17th anniversary of me and Richard which just added to the enjoyment of the day.
After these last few difficult months, I am grateful for the gathering of our family for lots of laughs and a wonderful celebration. Even though health problems persist with Robert and Carol and Richard, I was able to appreciate how healthy they are right at this moment and enjoy the magic of the day.
Happy birthday, Robert!
Saturday, August 30, 2014
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.
Wednesday, August 20, 2014
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
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.