Robert Update



How bad can it be? He's got his puzzle book and a shake!

The first thing I want to tell all of you is how much I appreciate the outpouring of support and concern from everyone.  (I've been posting quick updates on Robert's Facebook page www.facebook.com/robertssister if you'd like to follow and check in with us there too). 

Robert was admitted to the hospital on Friday. There was some debate about putting him in ICU or a regular room and he was kept in the ER for several hours until they eventually settled on a regular room with Telemetry monitoring.

His diagnosis: pneumonia in the right lung and Sepsis.

Google Sepsis and you'll know why this scared the crap out of me.

They started him on antibiotics (two different kinds) but yesterday and today his fever has ranged from "normal" to over 100 degrees. That may not seem like much but for Robert with his diminished cognitive reserves, it takes a huge toll. His blood pressure is low anyway but since Friday it has fluctuated from low to holy-crap low.

Today, they took more blood to run culture tests and also took another chest x-ray. I've been at the hospital all weekend in order to talk to the doctor when he does rounds in the morning and also through the shift changes so the nurses are able to meet me and I can reiterate certain details about Robert: give him his meds on time and he won't have an increase in seizures, he has seizures but doesn't convulse during them, he enjoys his food so it may take a couple of hours to finish his tray.

The important stuff.

He certainly seems better but not out of the woods yet. I am comforted by the fact that he's in a regular room and, when he's not sleeping (which he has been a LOT), he's joking around and working on his word search puzzle.

I have so many things to write about this whole ordeal including a difference of opinion with Other Brother about how necessary it is to stay at the hospital all day long since nurses go to school for a reason as well as a few beefs with New Home (shocker!) but will save those for another day when I'm not quite so tired.

Thank you all for your support and well wishes and thoughts and prayers. I've told Robert that he has a lot of people praying for him and thinking of him and hoping he gets better.

His response: a simple "thank you."

More later . . .

Total Extremes

I wanted to write a quick update and promise to update you more later.

Yesterday, Robert and I were interviewed for a nationally aired AARP produced for PBS TV program "Inside E Street." Woohoo! It was exciting and nervewracking and I joked with Robert that he was a TV star.

He loved it.

During the interview and time with him yesterday I noticed he was more sluggish than normal (dragging his foot more, falling asleep a lot). He stayed with us last night and I chalked it up to being tired from his big day.

Nope.

He woke up this morning with a fever and coudn't do basic things like sit up without assistance or follow directions like "can you put your hand on the walker?"  My husband (wow, thank goodness for my husband!) and I got him cleaned up from his leaky brief and changed his clothes.  I gave him some Tylenol and had him go back to sleep for a bit but we're going to have to take him to the hospital. 

There's a problem and it just might be the fever but I don't want to take any chances.  Plus, he just had a fever and was on antiobiotics two weeks ago.  Something isn't right. 

I'll keep you posted.

The Spring Wardrobe

Robert and his Spring Wardrobe

The weather is warming up so Robert is finally ready to wear his short sleeve shirts and keep his coat in the closet (well, we’re still working on that – he really likes to wear his coat).  Robert is very particular about his shirts so I’m always on the lookout for shirts that are button down, have easy buttons to manipulate, have a front pocket on the left and are some shade of blue or solid white. 

Since buttons are getting more and more difficult to manage for Robert, I was thrilled to find Buck and Buck which I briefly wrote about a few months ago.  I was first told about this clothing company from a fellow caregiver who needed clothing that zipped up in the back so that her mom with severe dementia couldn’t wiggle her way out of clothes and her protective brief.

I’ve ordered long sleeve and short sleeve men’s shirts from Buck and Buck and have been extremely pleased with their products.  More importantly, Robert is pleased too and has even branched out to include a red shirt in his wardrobe!

Buck and Buck is based in Seattle and has a variety of clothing for the disabled and elderly.  They also don’t do any advertising.  How in the world do they stay in business without a marketing budget?  By word of mouth, a reliable product and the best customer service a person could ask for. 

The shirts Robert uses are closed with Velcro but have the buttons on the outside so the shirt looks like any other dress shirt.  It makes dressing that much quicker and easier for Robert and undressing is done even quicker.  In fact, when I first showed Robert how the Velcro shirts worked, he carefully watched me “button” the shirt with the Velcro and then laughed at me “ripping” the shirt open to “unbutton” it. 

The shirts are practical and amusing.

My most recent order for Robert’s short sleeve shirts was placed one recent evening but I received a call the next morning from the customer service representative.  Apparently, I ordered two different kinds of shirts and the rep politely asked me if I actually wanted to do that.  One shirt was meant to be worn completely buttoned up (which covers up the Velcro) and the other was to be worn slightly open at the collar without any Velcro showing.  Did I mean to order two different shirts?   Um, no and thanks for calling.  Obviously, this caregiver needs all the help she can get.

Talk about good service!

Because I don’t want to keep this company a secret and (selfishly) want them to be in business for a very long time, I’m passing the word about this caregiving friendly company.  Please pass along their website (www.buckandbuck.com) to anyone who may need special clothing for their loved one.  (And, no, they didn’t pay me for this post).

I’d love to hear about your experiences with this company.  If you know of any other caregiver friendly companies, please let me know so we can spread the word and keep these businesses thriving!

Spilling the Family Secrets

After my mom died, I started writing a book about caring for her through her earlier depression and then as she succumbed to the cancer mercilessly thriving within her.  It took me ten years to write which, even by my perfectionist standards, was a tad on the lengthy side. 

I did wonder why it took me so long to write.  Sure, I had the usual (okay, the excessive) disclaimers but maybe there was something else that hindered my ability to finally call it “done.”

This book was something I was bursting to write.  I hoped the experiences I shared of growing up with a depressed mom and (most likely) bipolar father would help others in similar situations. (Having a brother with epilepsy didn’t even seem not “normal” to me).

As a family, we kept these things to ourselves and took care of the inevitable problems that resulted from these challenges ourselves. 

Then I wrote a book . . .

Both Mom and Dad had died when I published the book.  Dad knew I was working on it and assumed he would figure prominently and even joked about some of his most outrageous antics that should be included. He had started to read a few things I had written before he died but was always either effusive with the encouragement or indifferent.  (Dad never experienced what it was like in the middle of the road – always to one extreme or other). 

In the back of my mind, I was concerned about hurting his feelings with the book.  I was also very aware of how Mom would feel about it if she were still alive.  (I can see how this stops people from writing memoirs!).  I knew the book was written with love but didn’t want to hurt anyone’s feelings.  Growing up in a family concerned with appearances, this was a huge struggle for me. 

There isn’t forgiveness in the book but only because there is nothing for me to forgive.  We went through suicide attempts (Mom) and 3-day mental health holds (both Mom and Dad) but they had always tried their best so why would I have to forgive them?  There was nothing to forgive.  What we experienced was just part of what happened in our family, without malice, and I knew we all loved each other.  Forgiveness was an unnecessary part of the experience. 

I quieted my internal disclaimers and my concerns about hurting anyone’s feelings and hesitancy to spill the family secrets. 

I took a deep breath and published the book.

Then people started buying the book. Friends, acquaintances and extended family. 

Oh crap.  The extended family.

What would they think?  I loved my extended family and would never do anything to hurt them.  How would they feel about me opening the basement and letting everyone see what was down there? 

I don’t know for sure yet.  I did receive a very heartfelt letter from a couple members of my extended family. They both read the book and shared with me some tragic parts of their lives that I hadn’t known about.  I was honored they shared their own childhood experiences with me and hope sharing those experiences helped them in some way. 

Everyone has a story to tell and I like to listen to these stories.  My intent in telling my own story was to tell it with love and understanding and to let others know they are not alone with their family secrets – no matter what those secrets are.  What happened in my own family is nothing compared to what others have experienced but we all have something. 

Since publishing Forever a Caregiver, I’ve heard from many people who have said my book helped them realize they were not alone because they had similar childhoods.  They’ve told me this book that took me years to not only write but find the courage to actually publish, has helped them process their own experiences. 

These responses and those from my immediate and extended family make this ten year investment completely worth it. 

If you have a story (or family secret) to share, I would love to listen.  Acknowledging these experiences and sharing them can take away the hold they may still have on you. 

If you’d like your own copy of Forever a Caregiver, please visit here.