Monday, May 27, 2013

What I learned From New Home

Robert has lived with me and my husband, full-time, for two months now.  Before that, he lived with us on the weekends and lived at New Home through the week (unless he was sick or if we had to cut the weekends short because of the 73 day rule).

I made no secret about the fact I had some troubles with New Home and the facility before New Home.  I expect the best possible care for Robert whether he’s living in a facility or living with me.  Sometimes it just takes a while to get the facilities on board.

Playing cards at New Home
It’s easier to see what I’ve learned from these experiences with New Home and Old Home now that Robert is no longer living there.  (Now that I’m no longer on red-alert making sure he’s well cared for.)

I don’t think having Robert live with us is giving up on facilities because I think there are plenty of wonderful, caring facilities that Robert would be perfectly happy in and I would be happy with.  Finding those facilities will be priority number one if Robert ever gets to the point where my husband and I can’t give Robert the best possible care. 

In the meantime, I have gained some insight into these facilities and have to give credit where due.  Yes, you heard it here first - I am admitting that I learned a few things from New Home. Not that it was easy coming to this realization . . .

1.  Client care.  The people who truly care for the clients are the staff workers.  The people who work at the bottom of the pay scale but whose hearts are huge.  At Old Home, the person who cared for Robert the best was the woman who did his laundry.  She made sure his sheets were changed and cleaned daily and washed and returned his clothes to him within the same day.  She took me aside when I moved him out of Old Home and explained that he was extremely incontinent every night and the New Home should make sure he was kept clean and dry.  The real concern she showed for Robert touched my heart and made me wish she could follow him to every care facility he ever had to live in.  New Home had their own caring staff, many of whom were young adults supporting themselves through college.  They laughed at Robert’s silly jokes or took time to play a game or two of cards with him. 

When touring a facility to see if it’s the best fit, pay attention to the floor staff.  Do they engage with the residents or just do their work and watch television?  Do they seem at ease having conversations with a disabled or elderly client or are they uncomfortable?  

2.   Facilities need help being comfortable with family involvement.  Each facility is different, of course but there are varying degrees of comfort with family involvement.  Old Home was used to families visiting or taking the residents out for the day.  New Home had multi-layers of rules and regulations as far as visiting at the home or taking Robert out for the day or an overnight visit. The first time I took Robert out for the day, there was a great deal of commotion and chaos when we returned because they were not used to the clients leaving with family.  I felt like a criminal for taking Robert out to dinner.  However, I was not about to be intimidated into not visiting so learned all the rules (call House Manager and Supervisor ahead of time; sign the sign-in sheet; have an estimated time of return, etc.) and followed them.  After a while, the staff got used to me and relaxed the rules a bit.  Apparently, I wasn’t quite the scofflaw they thought I was (although, after Robert had lived there for almost two years, one new staff member asked for my identification before she’d let me into the house. That stung a little.). 

3.  Supply companies and program services.  The staff and even supervisors at both Old Home and New Home were terrific at pointing me in the right direction for services and programs for Robert.  It was at the suggestion of the Director of Old Home that I enroll Robert in the local Regional Center which opened up all kinds of services for him.  Because of this, Robert became eligible for a Day Program for other disabled adults and transportation services.  When the Regional Center suggested a few Day Programs for me to choose from, the staff at New Home provided insight into the different programs and which one would be a good fit for Robert.   Their guidance proved extremely helpful and accurate and Robert has been very happy at his Day Program for three years! 

New Home also provided me with the names of supply companies to use when I moved Robert into our home so I could continue to get his incontinent supplies.  This was extremely helpful and saved me research time as well as time spent setting up a new account. 

4.  They want to do the right thing.  Even though I had difficulty with the administrators in both facilities, I do think these people wanted to do the right thing for the clients.  In fact, I saw change in both facilities over time and, sometimes, after Robert left.  Both are corporations and must watch out for the bottom line which affects many, many decisions (staffing ratios, turnover, meal selection, to name a few).  It’s a difficult balance between solid client care and profits.  Administrators are juggling both goals and it oftentimes looks as if they lose sight of the health and well-being of the clients.  I can’t blame them their predicament.  I do blame the corporate atmosphere and, if Robert ever needs another facility, will look into privately owned homes.

5.  Communication.  I can’t stress how important communication is with these facilities.  When first placing Robert, I really underestimated how difficult it would be to communicate with Old and New Home.  Now I understand they have several residents of varying degrees of disability, health concerns and family (or not) involvement and may not be able to give Robert their full attention and me full reports on Robert.  This was something I assumed would be easy going in but soon realized there were always “behind the scenes” reasons for their behavior and lack of communication.  It was really difficult to maintain good communication because when I asked for seizure logs, for instance, I was always promised them.  And then they wouldn’t show up, even after repeatedly asking and explaining their importance.  If we ever need a facility again, I will need to come up with a much better plan to ensure great communication from the outset. 

I do appreciate both Old and New Home for taking care of Robert before we were able to do so.  I think they both provided Robert with very positive experiences (remember Robert playing Bingo every day and hoarding his Milky Way “prizes?”) 

These experiences have helped us get to where we are today – Robert living with us, trying to get used to dogs who are fascinated by him and love to invade his personal space (one of them, anyway) and all of us trying to establish new routines.

For this, I am grateful for the lessons I’ve learned from New Home (and Old Home) and for helping us get to the place where we all are today: Home.

Thursday, May 23, 2013

There’s Always Tomorrow

Newsflash:  Sometimes caregiving is fulfilling and sometimes it’s a pain in the you-know-what.

For someone who loves order and routine, I have learned am learning that these wide swings can be over the course of a month, week or day.   

Even moment to moment. 

Since moving Robert to our home, my husband and I have had challenges but we’ve had some really memorable moments with Robert too.  

It’s those moments of laughter and, for me anyway, routine that can sustain us through even long stretches of difficult times. 

These difficulties are not because Robert moved in with us because, as even a casual reader here knows, I had my difficulties when Robert lived in a care facility. 

Caregiving is caregiving no matter where your caree lives.

This past week presented challenges but it also had moments of pleasant surprise. I see glimpses of routine!  Some people may not like routine but I seek it at work and at home. It provides me something to count on and a sense of peace. As much as I love the word discombobulated, I loathe the feeling of it. 

I see Robert looking at Richard with respect and watching how he does things, seemingly making a mental note.  I see bad habits we’re trying to change in Robert go by the wayside.  I see progress with habits much more difficult to break. 

Knowing Robert is wearing clean clothes and is changed and kept clean as much as needed is a huge relief.  I see an improvement in Robert’s health (knock on wood).

I see light at the end of the tunnel. 

This is what a week on the way to “normal” and "routine" looks like:

Last Thursday

Robert’s GP suggested he see a pulmonary specialist since he’s been in the hospital twice in the past 11 months for pneumonia.  She wrote the referral and said to call in a few days to get the appointment.  I waited more than a week because I know how these things go.

My first call was to the clinic where I wanted the appointment and was told the referral was written for another clinic and to call them.

My second call was to that location but was told there was no referral and to call the central referral line.

My third call was to the central referral line.  They  told me they don't handle pulmonary referrals and to call office #2. After explaining I already did that, she took my number and said she will have office #2 call me back.

It’s been a week and I just today was able to get the appointment with the pulmonologist.  I gave up on my preferred location and am just happy I got an appointment. 

Thursday night:

Robert had a seizure and ended up on the floor (as much as we try to keep Robert seated or catch him when he falls, it’s not always possible – falls happen). He came out of the seizure with me, Richard, Taz and Oz on the floor with him. Instead of his usual confusion, he woke up giggling.  We must have been quite the sight! 


Richard stayed with Robert while I went to a yoga class in the morning with my daughter.  It was a studio we hadn’t been to before and we fell in love with it!  I was relaxed and rejuvenated. 

The middle of the day was filled with the not so fun stuff: multiple seizures, falls, hubby and I not communicating well and Taz (aka Crazy Puppy) and Robert not communicating well.

The evening was much better and was spent on the patio with Robert and I watching hubby play ball with the dogs. There was ice cream and laughter involved which helped soothe the rough spots of the day.


While I was outside with the puppy working on a writing project (and trying to tire the little maniac), Robert was just inside watching Wheel of Fortune. Every time someone solved a puzzle, he said, "That's good she solved it." Or if they go bankrupt, he would declare, "That's too bad he went bankrupt." He loves to give a running commentary during game shows!


While making dinner, I glanced over and saw Robert's hand moving. I assumed he was having a seizure (he sometimes tugs at his clothes when having a seizure) but saw he was petting Oz! Granted, Oz is our 8-year old, CALM lab who had walked over near Robert but until now Robert hasn't initiated petting any of the dogs. This is progress!


A birthday dinner out was planned for Richard’s mom but she became sick in the afternoon and by evening needed to be taken to urgent care (she is back home now and on antibiotics).   The upside of the evening is my daughter was over and was able to tire out the dogs and keep them out of Robert’s hair!


It was a hectic morning at work made even busier because I had to leave early to take Robert to a bone scan appointment.  Thankfully, Richard picked Robert up from Day Program which saved me from having to leave even earlier! Once they were home and Robert settled on one couch and Oz on the other. Robert looked over at Oz and, good-naturedly said, “Good afternoon, Oz.” 

I picked Robert up from home and took him to the appointment.  We were back in time to have pancakes for dinner! 

(We also just ended the evening with an earthquake! Luckily, there are no reports of damage but it was disconcerting to have the chair move beneath me. Robert and the dogs slept through it.)

There is definitely light at the end of the tunnel.  Early in the week a friend reminded me of a favorite quote:

"There's a great big beautiful tomorrow shining at the end of every day."

The beauty of this week is its normalcy (except that earthquake, of course) and the tiniest sliver of routine.  And the fact that there will be tomorrows full of routine and normal and pleasant surprises which will far outweigh the difficult days.  

Friday, May 10, 2013

Kindness – Every Little Bit Helps

It is sometimes difficult to believe in the goodness of the human race when there is such evil, violence and despicable acts splashed across most news sites.

A fond memory of mom
It can be difficult to see the goodness even for a Pollyanna like me, especially if I’m feeling under the weather – which I am due to a dental implant gone wrong.  As my daughter succinctly pointed out, I have become one of “those” stories – the horror stories people repeat to each other about medical procedures gone as wrong as you can imagine.

Here I am on pain medication and antibiotics with a raging infection in my mouth, swelling in my jaw and on a forced diet because I can only open my mouth wide enough to fit in the tiniest bits of a peanut butter and jelly sandwich (on the softest bread possible and absolutely no crust because even that is hard to chew).   

I guess pizza is a bad idea for dinner tonight.

I’m trying to get some work done from home today but it’s difficult to avoid the news.  The situation in Ohio is nothing short of horrific which is one reason we want to crown a hero.  People want to balance out the evil – let’s see some good!  Yay!  The women were saved by someone not afraid to get involved and not willing to ignore screaming from the neighbor’s house.  We have a hero! 

Then, for some odd reason, we want to dig up all the dirt possible on this man.    

Guess what?  People are not perfect.  People make mistakes – big mistakes (and, believe me, spousal abuse is a big mistake).  These mistakes cannot define a person, however.  These are pieces of a person’s life – some good, some really awful. 

I really don’t know anything about Charles Ramsey other than he, along with Angel Cordero, is credited with helping Amanda Berry escape her tormentor.  That is kindness.  Their efforts go a long way toward restoring our faith in the goodness of humans.  Maybe it even helps him make peace with his past mistakes. 

It’s such a simple concept: Be kind.  Spread kindness.  Do something kind for someone.  It doesn’t have to be huge because the ripples of kindness go beyond what we can even imagine. 

I believe people want to be kind.  Everyone wants to make a difference – to have an impact and to find a purpose to being here.  When my mom was dying of liver cancer, she struggled to know what her purpose had been.  She wasn’t famous or even outgoing but she was kind.  While she wondered what her purpose was, she tipped the cashier at the McDonald’s drive-thru.   She packed a bag full of groceries out of her cupboards when her daughter was struggling as a single mom.  She even threw in a box of dryer sheets because her daughter thought it was too extravagant to spend $3.50 on dryer sheets when every penny counted.

Throughout her life, Mom had also been depressed, suicidal and drank too much boxed wine.

None of these pieces of her solely defined her.  She was made up of kindness and a complicated life and poor coping skills.  In the end, it was her kindness that won out. 

We visited her favorite beach before she died and she made friends with a small boy who decided Mom was the one person on the entire beach he wanted to share his starfish with.  She spent time with him and made that moment on the beach memorable for me, watching my mom exude kindness.   Who knows how that kindness rippled through the boy’s life (or mine)?

 These small bits of kindness add up and make it easier to believe in the goodness of people. 

Let’s find the goodness and kindness in ourselves and share it with the world.  Even in bits as small as my peanut butter and jelly sandwich. 

Happy Mother’s Day, mom!  Your kindness is missed. 

Sunday, May 5, 2013


I love the word “discombobulated.”

Only a moment of peace -
do not be deceived
Just hearing the word conveys its meaning: confusion.  The word bounces around your mouth as if in a state of confusion itself.  Whenever I say it out loud it takes so long to say that I have time to wonder if I’m going to pronounce it correctly.  I have a moment to wonder when I’m going to get to the end of the word (I wonder the same when I am actually in a state of confusion). 

Will it ever end?

I’ve been feeling discombobulated lately and even though I know the feeling will eventually pass, that I will once again enjoy the comfort of routine, I wonder when it will happen.  How soon will I be able to establish new routines that I’m comfortable with and can count on? 

Some people don’t mind chaos and not knowing what’s around the corner.  I prefer to know exactly what to expect, when to expect it, and if it’s a problem, how to solve it. 

Some people call that being a control freak; I call it comforting.

When I am feeling discombobulated, I can physically feel the chaos in my body.  My nerves bounce around in my stomach, head and chest and my temper is triggered more quickly.  My patience wanes and I find myself getting easily frustrated about thing that normally don’t bother me. 

It’s only been just over a month that Robert moved in and we are working on developing new routines.  He needs help getting clean and staying clean, medications need to be organized, ordered and dispensed.  We don’t have an extra bedroom for Robert so the sofa sleeper needs to be pulled out each night and put away each morning (and since he’s incontinent there’s a lot of laundry in between - even with him wearing briefs and using lots of pads).   

There are habits that Robert has picked up after years of living independently and then in a facility setting and not knowing any better and we’re working on changing some of these bad habits.  These are things we have worked on when he visited over the weekend but were difficult to get them to stick since he lived elsewhere during the week.

These are habits that are important for him to change so that he can be more accepted in a social setting (like learning not to blow his nose at the dinner table) or for health or safety reasons (like knowing to ask for help when he uses the bathroom). 

It’s actually not that much extra work but my mornings are now filled with getting Robert ready for the day and making sure the puppy gets his play time instead of reading the news or other blogs or writing.  Part of my day is also spent teaching the puppy to stay out of Robert’s personal space and teaching Robert that hitting a puppy out of frustration is not okay (no matter how many times he tries to lick the straw of his chocolate shake or share his lunch).  

Thankfully, Hubby helps with Robert’s morning routine and gets his breakfast ready and makes a lunch for him to take to Day Program and I use that time to get ready for work. 

Moving to our house from the Board & Care was a big adjustment for Robert and for the first week, he had several seizures. Robert doesn’t like change either.

The extra seizures started to subside but less than two weeks after moving in Robert was in the ICU with pneumonia and septic shock. 

Talk about feeling discombobulated!  Running from home to the hospital to work and back to the hospital again completely disrupted routines at home and work.  Even the dogs were discombobulated and had a few accidents in the house while we were away. 

Robert recovered and was home after a week but his motor and personal care skills took a hit.  The routines we had established in the short time he was here before being hospitalized had to be recreated.  Robert and the puppy had to get reacquainted with the rules of getting along.

My stress started to show and I was more than a little cranky.  Even Robert was showing signs of stress.  

The discombobulation (yes, I made that up) seemed to want to take up permanent residence. 

Quite discombobulating for a control freak comforting-routine-seeker like myself.

I know I have to have patience.  The routines will come.  I will again find time to read my favorite blogs and websites.  I will again have time to write without sacrificing sleep.  I even think the puppy and Robert will eventually get along (they may not be best buddies but I do believe a peace accord is possible!).

I do see hope on the horizon.  My head realizes it’s only been a month – and a month which included a week long hospital stay at that!  My heart is still feeling a bit discombobulated but here I am writing which feeds my heart and soul.  I’m finding time to watch favorite shows with my husband.  I’m enjoying my time with the puppy and, of course, our good/more laid-back lab.  I am refueled with visits from my daughter and the occasional shoe shopping excursion. 

My husband gave me a moment of clarity at dinner last night when he asked Robert what he liked about living here since he had been here for a month. 

Robert thought for a second and responded, “It’s comfortable.” 

Now it is possible Robert was just talking about the sofa sleeper but it’s also possible he’s telling us he’s no longer discombobulated.   That he is happy living with us. 

It might take me a little longer to get there but I’m reaching for “comfortable” too and have faith I will get there.