March Interview with Denise Brown

In the March interview with Denise Brown of CareGiving.com, we talked about the stress of a working caregiver. I realized during our conversation there is a baseline of normal for my stress level and then there is a line that when I cross it, know I am under too much stress.

I feel it from my toes to the top of my head. I am tense and focused on plowing through the situation. My lips are pursed, my eyes are squinty and I forget to eat, drink and go to the bathroom.

Grumpy Cat - Always full of wisdom

Stress builds up and is manageable until it isn’t.  It can be one little thing that makes me cross that line (an unexpected work project; a deadline that has been moved up; a cluster of seizures Robert experiences or the question “why don’t you handle ‘insert project here’ this way?”).

I AM GOOD AT MY JOB SO LET ME DO IT!

There is a line and I know when I have crossed it.

I get cranky (see above) and need to indulge in self-care.  What if there isn’t time for that?  Then I postpone the self-care for a short-period of time (a day, a week) but I know that it will happen. For me, self-care is usually a manicure or pedicure (or if I am really indulgent, both). If my schedule is so packed that I cannot indulge in that block of time, I know that I have to do something to relax – maybe just watch a television show or have unproductive computer time (you know, watching cute cat or dog videos).

Where is your line?  What do you do when you have crossed from the manageable stress level to the “I CAN’T TAKE IT ANYMORE!” level?

I invite you to share what pushes you over that line in the comment section below.  

Also, please join us the second Saturday of each month to listen live so you can participate and ask questions or comment in the chatroom during the show.  I look forward to the show with Denise and as we also discussed this month, the shows are a great collection of the ups and downs of caregiving – each month is a new episode.

Denise asked what I hope to talk about in April. I told her I hope to have the house sold and have us well on the way to moving into a one-story house. That is an episode I would like to end soon!

I think I might actually yell, “That’s a wrap!” when we sign on a new house – someone get me a megaphone!  

Thank you for listening (and reading). 

The March show can be heard here.

New Day Program: A Warm Welcome

Once we determined Robert needed more care at his Day Program, including having the option of using his wheelchair when his mobility was questionable, the transfer happened fairly quickly.

Robert's first day of new program (2014)

Fortunately, we had the option of going to another program run by Easter Seals.  I have been very happy with Robert’s other Easter Seals Day Program and had no doubt the new one would be just as terrific. 

We toured the facility, completed paperwork, got the transfer arranged through Robert’s Regional Center and had the intake meeting all within a few weeks of the decision to move him.

As with any change, I was a little concerned if this was the best choice for Robert.  After all, the staff at the other program knew his quirks, Robert had friends at his other program and most of all, he had his routines.

Routine is huge in Robert’s life.  We have realized that change is actually a seizure trigger for him so I do not take lightly making any changes to his routine. 

The new program had numerous benefits though: Robert could use the wheelchair whenever we thought it was necessary (and, actually, it’s become a daily necessity). There were more staff per clients and since Robert’s needs were increasing, this was a huge bonus.

Selfishly, I was looking forward to it being in a more convenient location. Since Robert returned home from the Skilled Nursing Facility, we had decided to make the morning routine less rushed.  Robert sleeps in later than he did before being hospitalized and we no longer take advantage of the morning transportation to program.  Richard or I take him to program once he is ready and we are not rushing him or stressing him (and us) out in the morning. The problem with this plan is that the previous program is 20 minutes from our home and that much further from my office. 

As a working caregiver, this was a price I decided was necessary to pay.  Even though I arrived at the office later than I would have liked, I checked emails and voicemails in the morning (don’t worry – not while driving!).  I also spent a lot more at Starbucks because by the time I was done with the caregiving part of my morning, I was ready for another dose of caffeine!

The new program is mid-way between our house and the office and five minutes from Robert’s physical therapy. (That is a whole other routine of drop off and pick up on physical therapy days.)

So, yes, selfishly, I was looking forward to this more convenient location. I was also relieved that I didn’t have to worry about sending Robert to program with a walker when he would be safer in the wheelchair.  I was looking forward to more staff helping Robert in the bathroom and helping him make safe decisions (sometimes Robert misjudges distance or his ability to pick up something from the floor which causes him to topple over).

I’d rather not get calls that Robert has fallen onto another client or over-corrected his walker and fallen sideways onto the floor. (Both have happened.)

During the transition period, Richard and I spoke enthusiastically of the new program and Robert was excited about the change.  He did have an uptick in his seizures which I believe was due to the anticipated change.  However, I knew he would establish new routines quickly and was happy with the speed of the transfer so was confident this disruption would pass.

The intake process was extremely helpful as it gave me an opportunity to tell them about Robert’s likes, quirks and things that irritated him. I asked if it would be helpful to send a list of upcoming appointments instead of calling in the morning of each appointment and they appreciated that idea.  The intake meeting was a great chance to offer suggestions on how best to communicate with Robert, especially during his stubborn moments.

I was very impressed with the staff on Robert’s first day.  They were very conscientious about the medication I was dropping off, counting it, completing paperwork and even training other staff members on how medication intake was done. 

It seemed as if the staff had read all about Robert before he even arrived that first day.

While I was discussing medications and the bathroom help that is needed, Robert made himself comfortable at a nearby table and was soon surrounded by clients befriending the “new guy.”

It didn’t hurt that most of them were women since Robert fancies himself a ladies man!

Unfortunately, Robert had an incident after the first few days (Argh! It’s only been three days!). Apparently, he refused bathroom help and got angry with the staff person trying to help him. He was eventually changed but refused help later in the day and ended up at home soaking wet.

The site manager has been terrific with communication, though. By the time I got home from work, Richard told me how Robert came home on the van soaking wet.  I had an email from the site manager explaining what happened as well as a note in Robert’s bag from the staff member who was involved in the incident. 

I talked with Robert and explained the staff were there to help and that it wasn’t okay to not be nice to them.  Robert listened intently, as he always does, and said, “I understand.”

I explained to Robert that he would have to apologize to the staff member the next day.  He agreed and I told him the name of the person he needed to apologize to.  The whole next morning while getting ready, Robert asked me who he was supposed to apologize to.  I told him he had to talk to Noah.

“Noah?”

Yes, Noah.

“Thank you for telling me that.”

Fifteen minutes would pass and Robert asked, “Is the lady’s name Christine?”

No, you have to talk to Noah. It’s a guy.

“Noah?”

Yes, Noah.

“Thank you for telling me that.”

We repeated this routine until we arrived at Day Program. As I pushed the wheelchair into the building, I asked a staff member where we could find Noah. She didn’t hear me at first so Robert repeated the question. She pointed us in the right direction and Robert looked at Noah and said, “I’m sorry I wasn’t nice to you, Noah” and extended his hand.

Noah shook Robert’s hand and told him it was okay.

I talked with the site manager and told her I was sure there would be more instances like this but hopefully, they would be few and far between.  I asked her to continue to keep me informed about behavior issues and we would work on them at home. She was grateful for our communication.

I too am grateful for the communication, as well as the care they are giving Robert, even on his difficult days.

Aside from the “off” day, Robert is coming home excited about his day and the various activities they have him doing.  So far, he has tried arts & crafts, a visit to the local park and a day of volunteer work.  All things he said he wanted to do. 

He is coming home telling Richard the names of the new people he met and as far as I can tell, he already has several friends. One morning when I dropped him off he greeted one of the clients by extending his hand to hers. More of a “holding hands” gesture than a handshake so I think he’s getting along with his new friends just fine.

There were bumps in the first week but overall, I think Robert is going to be just fine – if not downright excellent.

10 Tips for the Working Caregiver

During November, for National Caregivers Month, Caregiving.com shared 10 Tips for Family Caregivers – every day. These tips came from other caregivers or Denise Brown and I have been grateful for these as there was always something someone came up with that was new and helpful.

My contributions were about caring for someone with epilepsy and, along with G-J Heins, tips for caregivers while traveling while traveling.  The tips today are about the working caregiver (and, yes, I realize it isn't November.) 

Considering 42 million Americans work while also juggling their caregiving responsibilities, we need all the help we can get. Here are the 10 tips to help the Working Caregiver I shared on Caregiving.com:  

1. Communicate with your employer.  Not everyone will be comfortable telling their employer about their personal situation and, sadly, this may not be a good idea with some employers. However, even though it isn’t even necessary to do so but it can be a huge help.  Remember, there are 42 million working caregivers so there is a pretty good chance at least some of the people you work with (maybe even the boss) are a working caregiver too.

2. Adjust your schedule.  Consider if a schedule change could help with the routine with your caree.  Maybe it would fit better with the caree’s needs to have an earlier schedule or a longer lunch. In my own experience as a manager, I have a secretary who requested an adjustment to her hours so she could see her mom in the morning and during lunch.  She wasn’t reducing the number of hours she works but making a slight change to when she worked. She is a valuable employee so we didn’t have any problem approving her request. The transition has been seamless. 

3. Know the leave laws. Ask the Human Resources Manager (or look in the employee handbook) to see if you are eligible for leave under FMLA (Federal Medical Leave Act). Additional leave laws and benefits vary from state to state but can be crucial in protecting your job. Unfortunately, not everyone qualifies under these leaves (for instance, sibling care is not covered under FMLA) so it is important to check with the HR Manager to find out exactly what you might qualify for.

4. Ask for help.   Working and caregiving can be exhausting.  Getting additional help for even a few hours a week could make the difference between burning out (fast) and feeling like the situation is manageable.  Check home health agencies, benefits provided by insurance or even ask relatives, friends or neighbors for help. 

5. Be an Exceptional Employee.  No one is indispensable and, of course, employers do have to comply with leave laws. Yet, you can buy a lot of good will by being the best employee possible which can help when asking for something the employer doesn’t have to do. 

6. Use the Employee Assistance Program.  If your employer has an EAP, you are in luck! This is a terrific service – free to the employee.  With just a phone call, there is a person waiting to talk with you and to provide you with all kinds of resources covering a variety of topics – including caregiving.   

7. Connect with others.  Whether it is with other co-workers in a similar situation or an online support group (such as Caregiving.com), reach out and talk with others in a similar situation. Caregivers are extremely resourceful and can lend a listening ear, helpful tips, support and encouragement. It might be tempting to cocoon yourself away from others but as a working caregiver we need all the connections with others we can get.  

8. Organize, Organize, Organize. Yes, I include this in every list I ever make – but it’s true! It is especially true if you are a working caregiver. Organization is not only important with the caree (keeping track of medications, doctor visits, vitals, contacts – plus a million more) but at work. If there are recurring projects, do everything possible to get as much of those tasks done ahead of time when there is a lull or a little bit of downtime.  As a caregiver, we never know when an emergency hospital visit or other emergency will strike. It will be a relief to know you are not completely behind on work if you stay organized and ahead of the game. 

9. Take a break.  I know – everyone says this and it can get annoying (especially if it seems impossible to do).  I am suggesting if you have to take care of caregiving duties on your lunch break (making doctor appointments or updating medication spreadsheets or visiting your caree), try to take a small portion of that break just for you. Read a couple of pages of a book (unrelated to caregiving). Close your eyes and take ten deep breaths. Stand up and stretch. Walk around the block. Walk to the corner if there isn’t enough time to walk around the block. Listen to your favorite music during the commute. Take those snippets of time (sometimes just a minute or two at a time) to nourish your soul and refill your bucket. 

10. Forgive yourself. You’re going to have bad mornings with your caree and sometimes they will follow you to work.  You will get cranky and tired at work. The stress will seem overwhelming and never-ending. Remember that it will be okay and tomorrow is a whole new day. Don’t waste time beating yourself up. You are not alone and you are doing extraordinary work as a working caregiver. Forgive yourself – you deserve it. 

There are so many other tips for the working caregiver but I would love for you to share your own tips. After all, we are here to learn from each other! 

Discombobulated

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. 

When Things Are Too Much

“I was wondering if this would be too much for you.”

A friend, Denise Brown, recently asked me this but she wasn’t referring to caring for Robert.  She knows Richard and I can care for Robert and that bringing him into our home was the right decision for us. 

She was referring to an interview she asked me to participate in.  Denise had invited me on her show to discuss working and caregiving with a panel of other working caregivers.  (The show airs Friday at noon Pacific and can be watched here).   

Unfortunately, both working and caregiving got in the way of doing an interview about working and caregiving!

Richard and I are easily settling into a routine with Robert much as we did when we blended our families and raised three kids together.  We have our rough spots but the best thing we do is work well as a team. 

In the morning, I get Robert up, washed and get him his medications.  Richard makes decaf coffee for Robert and a mocha for me (costing Starbucks a small fortune in the process).  He prepares Robert’s breakfast and packs a lunch for Robert as well.  By the time I’ve finished helping Robert get ready for the day and he’s eating breakfast, Richard has showered and dressed and is able to keep an eye on Robert while I get ready for work. 

The night time rituals are split evenly as well and we even get to spend quality time watching whatever crime show has our interest at the moment (for now, it’s NCIS).

The routine goes smoothly until The Universe decides to pile on.  Remember when I thought I was being tested?  Apparently, the test has extra credit now.  

Last weekend, Richard was put on bed rest because of a complication from his chronic back pain (his legs swelled up enough to make his knees disappear and make his legs look like mid-size tree trunks).  A few days before that, I had a dental procedure go horribly wrong and was in excruciating pain for days.  I have a high tolerance for pain (I gave birth to my daughter without using pain meds and pride myself in taking only one pain pill after my appendix was removed).  Actually needing pain medicine so I could function was a shock for me and one I fought valiantly against. 

I had to give in – the pain was too severe.   (Thankfully, my pain is finally getting better which I can attribute to either my mouth healing or the wonders of pain meds). 

In the midst of missing some work for the dental appointments, dealing with pain, worrying about hubby’s gigantic legs (and throwing in an afternoon off to take Robert to a neurology appointment as well as watching Robert’s cold come back), I was working on several projects at the office with deadlines this week.

The interview on Friday was looming and even though I could do it over the lunch hour, I was concerned I wouldn’t be able to finish a project that is due Friday. 

I reluctantly bowed out but cringed when Denise told me she wondered if this would be too much.  She didn’t mean anything negative by it – she just has no idea how neurotic I am.

I don’t want to admit anything is too much!  I can do it – I mean, really, I could.  My thinking is unless I am completely incapacitated, I can make it happen. 

I certainly don’t like saying, “I can’t” because it sounds to me too much like, “I have failed.” 

Is that really true, though?  Maybe it’s okay to say, “No, not this time” without it meaning failure. 

Maybe it’s okay to say, “This is too much” even if I’m still standing.   

Sometimes, there is a reason things happen and things end up working out for the best.  What was just a little congestion all week and even up until a few hours ago took a terrible turn tonight and Robert is now running a fever, coughing and wheezing.  It’s actually a relief that I declined the interview (although, obviously, I couldn’t have known Robert would be getting this sick at the time).

Maybe The Universe is testing me but maybe it’s also trying to help me out. 

Even though I won’t be discussing working and caregiving with a panel of talented men and women, I will be doing some working and caregiving and hope to be able to join them in their discussions next time. 

(Please keep your fingers crossed for Robert – let’s hope this cold doesn’t get any worse).

Welcome Home, Robert

No more rationing how many nights Robert can sleep over;

No more arranging doctor appointments not only around my schedule, work and when Robert is sleeping over but New Home schedule;

 

Robert's first "official" night home -
with a bowl of Rocky Road Ice Cream

No more worry if Robert’s seizures are being logged;

No more worry if he is wearing clean pants every day (and a dry brief) or if I have to change him before bringing him home;

No more calls from Robert asking if he can come over a day early and having to explain why he can’t (a real problem when we’re hitting our limit of overnight visits);

No more communication problems with New Home (although, to be fair, this had shown improvement in recent months);  

Robert is home!

The actual move didn’t take long but the timing turned out to be perfect.  I was supposed to meet the regional director at 10:00 a.m.  I soon found out she was not meeting me but having the new house manager handle the exit.  (Wonderful New House Manager was moved to a different house and a new House Manager was hired – someone promoted from the floor staff and who is very caring of the clients so I wasn't too wary of the change).

When I arrived, Robert’s things were being logged and packed because they didn’t know when Robert was moving out (the director hadn't told them and Robert had told them it was going to be that afternoon – he’s not very reliable for that sort of information). 

Robert was waiting, as he always does, in a recliner working on his Word Search puzzle.  I asked him if he remembered he was moving in with me and Richard and all I got was a, “Yes, I remember.”

I know better than to expect fanfare and excitement with Robert.  Partly because of the medications he takes and partly due to his brain surgeries, he doesn’t get overly excited about anything (unless he happens to tell a joke he thinks is particularly funny). 

The new House Manager did say he’d noticed a little more skip in Robert’s step.

Ah, I had my suspicions Robert may be excited after all!  

Fortunately, Robert’s roommate was going home for the weekend and leaving at the time I arrived, so I was able to talk to his mom and give her my contact information so the guys can get together for lunch at some point.  Robert will definitely miss his roommate and the feeling appears to be mutual so I’d like them to maintain that friendship.

If I needed validation this was the right decision, I got it in spades.

I shouldn’t have been surprised there were communication issues about the move out time.  Not a huge deal but typical of my experience there the last two years.

Validation . . .

Robert’s roommate’s mom also told me a story about when she had moved her son in to New Home and how he had a broken foot for a week before it was noticed.  For someone who is supposed to get daily shower assistance, it really makes me wonder how this could have happened.  

Validation . . . 

Granted, they’ve had numerous staffing changes since then but have yet to stabilize their staff.  They might have wonderful people there now but they haven’t been doing the job for any length of time. I hope for the sake of the clients, the staffing will stay stable. 

What I felt most during the move was relief.  It is such a relief not to have to worry about Robert getting good care and whether any changes in his health are noticed.  I’ve cut out the middle man so it’s on me now. 

And that's okay.

I’m fortunate Robert is high-functioning and fairly healthy and can do many things on his own (although at a very, very slow speed).  I’m interested how the move to our house will affect his behavior and if he will become more independent or will stay about the same.  Since Robert was the most high-functioning at New Home, I always wondered if he deteriorated a bit because of his environment.  We’ll see and it is something I will keep in mind down the road if he ever needs placement again. 

My experience with New Home also gave me a clear idea of what I would like in a future placement, whenever that may be necessary. 

The medications were transferred seamlessly (although I did somehow end up with a couple of expired over-the-counter medications).

Yep, validation. 

The briefs and bed pads along with clothes and personal care items were loaded into our cars. Fortunately for me, Hubby knows how to pack a car to maximum capacity.  I underestimated the number of boxes of briefs coming with us but Hubby made it work and we were able to move in just one trip.

Robert said his goodbyes to everyone at New Home and shook hands with his roommate.  He didn’t jump for joy when we walked out of New Home but kept to his weekend routine and asked if he could have a chocolate shake. (There’s a lot to be said about routine). 

Once we arrived home, Robert walked over to his place on the couch, took off his jacket and settled in to watch Jeopardy and do his Word Search.  Chocolate shake by his side, Robert looked pretty content.

The best validation of all . . . 

I know we’ll have our share of problems and frustrations as well as new worries.  We might even get sick of each other. 

For now, I’ll take content.

Welcome home, Robert.

Universe, Are You Testing Me?

On Tuesday, I announce that Robert is going to live with us starting in April.

Robert is on the mend!

On Wednesday, the Wonderful New Home House Manager calls to tell me Robert is not feeling well and wanted to stay at New Home instead of going to Day Program.  Robert has had a cold/flu all winter and has periodically missed his Day Program to stay home and rest.  Between living in a home with six guys and going to a Day Program with 50 + adults (all of whom need assistance in some way or another), Robert pretty much lives in a germ factory.

By Wednesday evening, Robert’s cold had gotten worse so I decided to pick him up from New Home and keep an eye on him at our house. Robert tends to go downhill pretty quickly and because New Home is located pretty far away, if an ambulance is needed they won’t take him to the hospital associated with his doctors. This means I have to update new doctors on his epilepsy, medications, medical history, etc. while trying to get him treated for whatever ails him. 

If he’s at my house and we have to call an ambulance, they’ll take him to the hospital where both his GP and his neurologist are affiliated.  Emergency Rooms are hectic enough without having to start from scratch.  Driving the hour and a half round trip to get him up was definitely going to make things a lot easier if Robert suddenly took a turn for the worse.

Once Thursday morning arrived, I was grateful for the decision to bring him to our house.  Robert woke up with a fever, was extremely lethargic and his cough sounded awful.  I was worried about pneumonia again so made Robert a doctor’s appointment which, unfortunately, couldn't happen until late in the day. 

I started to suspect The Universe was testing me.

Robert was sick, I had a work event mid-day, Hubby was taking his mom to a doctor’s appointment out of town so couldn’t stay home with Robert and Robert had a doctor’s appointment late afternoon.

Oh, yeah, and one of our bathroom pipes sprung a leak. 

Yep, The Universe was really enjoying this.

I thought I might be able to take Robert back to New Home for a few hours so I could take care of the work thing (he technically still lives there, after all, so I may as well take advantage of them).  If so, I could pick him up once I was done at work and take him to his doctor appointment.  It would be tight but doable.

Except Robert could barely keep his eyes open much less get up and walk out to the car. 

I realized I wasn’t going to make the work event (much less get any work done).  Robert slept until it was time to get ready for the doctor.  Once there, I was grateful for the wheelchairs they have available if needed.  I wheeled Robert into the appointment and talked to the doctor about how sick he was (while Robert was groggily telling her he felt excellent).  She prescribed antibiotics to fight off suspected pneumonia and a chest x-ray to confirm her suspicions.  I took the opportunity to talk to the doctor and her nurse about the plan to move Robert into our house and ask for their advice on how to manage the medications.  I felt much better about the process after talking to them.

Robert stayed with us for another night and while Hubby supervised his dinner, I ran back to New Home to get more of his anti-seizure medications as well as the antibiotics. 

I’m exhausted before Robert has even moved in but think I did okay on The Test.  I didn’t eat as well as I should have and I let myself get stressed out for a minute about not doing all I had planned but I was able to adapt and adjust Plan A and go to Plan B.  

I also realized I don’t need to get an A+ or do 100% of what I had hoped to have a successful caregiving day and (bonus!) was able to get information on how to get Robert’s prescriptions transferred.

It really helped to also reach out for support from my fellow caregiving friends and got this bit of encouragement from Denise Brown of Caregiving.com, “If I might offer a perspective: I don’t think this is a test so much as a reminder that you are critical to Robert’s well-being.”

Well, if this is a test I’m going to count all of these realizations as extra credit. Not that I'm competitive or anything. J

Happy Anniversary, FMLA!

On February 5, 1993, President Bill Clinton signed into law the Family and Medical Leave Act (FMLA). (Yeah, I’m a few days late with the anniversary wishes – I blame the puppy). J

FMLA provides unpaid protected leave to eligible employees employed by a business with 50 or more employees.  Specifically, the Department of Labor defines the FMLA as follows:

The FMLA entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave. Eligible employees are entitled to:

·         Twelve work weeks of leave in a 12-month period for:

o   the birth of a child and to care for the newborn child within one year of birth;

o   the placement with the employee of a child for adoption or foster care and to care for the newly placed child within one year of placement;

o   to care for the employee’s spouse, child, or parent who has a serious health condition;

o   a serious health condition that makes the employee unable to perform the essential functions of his or her job;

o   any qualifying exigency arising out of the fact that the employee’s spouse, son, daughter, or parent is a covered military member on “covered active duty;” or

o   Twenty-six workweeks of leave during a single 12-month period to care for a covered service member with a serious injury or illness if the eligible employee is the service member’s spouse, son, daughter, parent, or next of kin (military caregiver leave).

 

According to the Department of Labor, the “findings and purpose” of this revolutionary leave act was to “balance the demands of the workplace with the needs of families.”  

Twenty years ago, the President and Congress recognized that the majority of caregiving roles fell to women and these caregiving responsibilities affected women in the workplace more than they did men, therefore one purpose of the FMLA was to “promote the goal of equal employment opportunity for women and men.”

While the majority of caregiving responsibilities do fall to women, that has even changed over the years as more men become primary caregivers.

In a 1997 study, the National Alliance for Caregiving and AARP showed the face of caregiving looking like this:

o   There were more than 22 million caregiving households;

o   73% of caregivers were women;

o   23% care for more than one person;

o   85% of caregivers care for a relative; (Robert’s Sister note: the specific relatives were not broken down in this study);

o   64% of caregivers were employed;

By 2009, a study by the National Alliance for Caregiving and AARP shows the changing world of caregiving:

o   65 million caregivers provide care to someone who is ill, disabled or aged;

o   66% of caregivers are women;

o   33% of caregivers take care of more than one person;

o   86% of caregivers care for a relative; 33% of caregivers care for a parent. The rest care for a child, in-law, sibling, grandparent, grandchild, spouse or other relative or friend;

o   73% of caregivers were employed at some time when they were caregiving;

o   Among the working caregivers, two-thirds have needed to revise their work schedule in order to take care of caregiving responsibilities;

The number of caregivers exploded over those years, with an increase in the number of working caregivers and those caregivers caring for more than one person.

 

It is obvious many of those being cared for do not meet the definition of family under FMLA: there are caregivers providing care to grandchildren, grandparents, aunts, uncles, siblings and adult children (who are not dependents) in addition to those who care for a spouse, parent or dependent child.

 

In order to keep up with the growing caregiving population – and keep those growing numbers of caregivers in the workforce – FMLA needs to change.

 

Keep in mind, FMLA is an UNPAID protected leave. 

 

Would a paid leave help family caregivers stay in the workforce longer?  Of course.  However, as an employer, I understand this could be a strain on employers so I am not asking for that (okay, not yet). 

 

What I’d like to see changed in the near future is an expanded definition of family.  Why not include siblings, in-laws, grandparents, domestic partners, adult children (non-dependents) and grandchildren? 

 

What I would like to see changed is a lower employer threshold.  Why not allow eligibility to those employed by businesses that have fewer than 50 employees?

 

FMLA needs to expand the definition of family and FMLA needs to lower the threshold of the minimum number of employees in a business to qualify for coverage. Many states have taken steps on their own to address these limitations within FMLA. 

 

California is one state which has made strides in changing the definition of family under the California Family Rights Act (CFRA) by including domestic partners but has stopped short of including any other type of family care.  Legislation has been introduced the last few years to expand the definition of family under CFRA but, unfortunately, has not yet succeeded.

 

I would like to see change in the definition of family on both the national and state level of these family leave acts.

 

I am grateful for what President Clinton did twenty years ago for the working family caregiver but it is time to recognize caregiving responsibilities have changed and include more than what was envisioned in 1993. 

 

I hope you had a nice anniversary, FMLA.

 

Now let’s make some changes.

Working and Caregiving: Emotions in the Workplace

As a Legal Administrator (manager of a mid-size law firm), I have had many situations in which I’ve had to keep a cool head: firm closures, office moves and lay-offs as well as the routine tasks of preparing the annual budget, conducting reviews and hiring or terminating employees. 

Panic, freaking out, emotional breakdowns (by me) cannot happen during any of these situations and I have done a very good job of keeping my emotions in check during any and all of these stressful situations.  (I usually have a meltdown once the situation has passed but that’s another story.)

One instance stands out where I did not keep it together – at all.

It was our annual budget time which occurs each January (guess what I’m doing this month at work . . .).  It’s a stressful time because, for one reason, expenses have to be kept to a minimum.   Since I do a pretty decent job of this, it’s a personal goal to do even better the following year.  Which means hours of review, analysis and decisions. The budget process is intense, stressful and exhausting.  In fact, I joke that I’ve had exploding body parts because of it (one January, I developed Appendicitis and had to have my appendix removed.  I asked the surgeon just before going in for surgery if I’d be able to return to work in time for my budget meeting). 

Budget time is a stressful time.

I became involved in Robert’s care in late 2008.  In January 2009, he was in the hospital with a life-threatening infection needing surgery and looking at weeks of intravenous antibiotic treatment.  I was simultaneously managing Robert’s care and involved in one of my most stressful projects at work (the budget). 

Upon handing a draft of the budget to the Managing Partner, he asked a simple question.  I don’t even remember what it was but I became defensive and angry and burst into tears. How embarrassing!  Poor guy didn’t know what hit him.  I managed to extricate myself from the conversation and get back to my office as my tears wouldn’t listen to my brain screaming, “STOP!” 

The Managing Partner later called me (so brave of him!) and asked why in the world I was so upset about the question he asked. 

It was then that I explained what was going on in my life as a new caregiver.  I had only briefly mentioned that my brother was ill but, after my out of character meltdown at the drop of a hat, felt I owed him an explanation.  Thankfully, he was understanding and compassionate.  The budget eventually was completed without any other meltdowns from me (in front of the managing partner, anyway).

Are emotions like this okay in the workplace?  Working caregivers can be stressed out or exhausted (or both) yet come in day in, day out to do their job.  Saturday, on “Table Talk, Your Caregiving Journey,” Denise Brown of Caregiving.com asked the question, “How do you keep it together at work?” 

Denise and I talked about emotions in the workplace during our chat and explored possible solutions for the caregiver to manage these inevitable bad days (and, sometimes even, the meltdowns). 

Denise and I came up with five tips to manage the emotions:

• Talk to a trusted friend at work;
• Share the situation with your boss (if you are comfortable doing so);
• Use the Employee Assistance Program at work;
• Channel those emotions into projects;
• Take a day off or consider if it might be time for a longer-term solution such as flex-time or job sharing;

Click on the player below to hear the entire program and please join me and Denise on the 2^nd Saturday of each month as we discuss issues facing the working caregiver. 

I promise not to have a meltdown during the show! 

Please share your Working Caregiver stories in the comment section.  I'd love to know how others handle the emotions in the workplace. 

Listen to internet radio with Denise Brown on Blog Talk Radio

Working and Caregiving: Communication, Flexibility, Creativity

On today’s to-do list:

·         Decorate the outside of the house;
·         Start and finish Christmas cards;
·         Pick up Robert and bring him to our house;
·         Help Robert maneuver through the myriad of Christmas decorations I have (hopefully) just installed;
·         Have Robert start his Christmas cards; Expecting him to finish in one day is unrealistic – actually expecting him to finish before Christmas is a stretch; (Yikes! I should have started a month ago!)

The list goes on but you get the idea. It’s the holidays and there’s a lot to do!

Before tackling my to-do list today, I joined Denise M. Brown of Caregiving.com on her internet radio program, “Table Talk.”  I join Denise the second Saturday of each month to talk about the issues facing working caregivers.  As Sally Abrahms, a blogger on AARP.org, shares from the AARP Public Policy Institute, “61 percent of family caregivers age 50-plus work either full-time (50 percent) or part-time (11 percent).”

That’s a lot of caregivers impacted by policies and benefits in the workplace that may or may not be sensitive to the needs of those caring for a family member or friend.

On the show today, Denise and I talked about how the holidays add extra stress to people already stretched thin with their responsibilities: work, family, caregiving, self and now the holidays.  How does the working caregiver juggle not only these responsibilities but the very real possibility of the unexpected (a hospital stay or illness) happening?

For starters, with communication, flexibility and creativity.

Employers don’t always know what an employee may need and it’s going to take a while for the law to catch up to the ever changing needs of both the employer and employee.  I know this first-hand after fighting for an expanded definition of family under CFRA.  Sibling care is not covered under either FMLA or the California version of it (CFRA).  If the law hasn't caught up yet, then employees need to ask for what they want from their employer.  Whether it’s a more flexible schedule or paid sick time to care for a relative not covered under FMLA or CFRA, communicating the employee’s needs to the employer is the first step to change.

Working caregivers can be the hardest working employees an employer has.  Add to this the benefit of having long-term employees and these are the employees employers do not want to lose.  Flexibility – from both sides – is essential to making this working caregiver situation work. 

Coming up with creative solutions so the working caregiver does not feel compelled to quit their job and the employer maintains a high quality employee is not easy but it is possible.  Flex-time, job sharing, a combination of working from home and the office are just a few creative solutions. 

Caregivers are very adept at creative decision making and problem-solving in their caregiving role and there’s no reason to think they wouldn’t be in workplace either. 

In our conversation this morning, Denise tells a funny story about how she “creatively” managed her full-time and part-time jobs. 

As a working caregiver, how do you manage both the caregiver and employee roles?  What creative solutions have you suggested or implemented as an employee or employer?  I’m interested to know how people have resolved this conflict without leaving the workforce. 

If you’d like to listen to the show today, please click here.  

I’m off to tackle my to-do list!  Wish me luck or the next picture I post could be me tangled in holiday lights and Christmas cards!

Two Appointments, Lots of Rain and a Few Surprises

Robert had two doctor appointments on Monday.  I schedule his GP appointments for Monday mornings so Robert can visit on Sunday and have an overnight visit.  I’m carefully counting the overnights since we are only allotted 73 for the entire year.  (I did find out that we can pay $182 per night if we go over the limit).  It’s great to have a back-up plan but sheesh – for that amount Robert should be staying in a fancy hotel not sleeping on a sofa bed in the middle of my family room! 

His second appointment was with the Memory Specialist and was set for Monday afternoon.  Even though I had to take a full day off work in order to accommodate the appointments it worked out perfectly. 

Except for the rain. 

I forget that Robert does not like to get wet (he won’t argue about his showers but he does want to dry off pretty quickly). 

We set out for the first appointment only to have Robert stop in his tracks once we went out the front door because it was raining. 

“Can you open the umbrella, please?”

I’m carrying Robert’s “just in case of an accident” bag, my purse, my bag with information for the doctor and trying to steer Robert toward the car.  I thought we could make a run for it.

“Robert, the car is just around the corner of the house.  Get moving.”

He won’t budge.  I expect to hear him start screeching, “I’m melting, I’m melting!” any minute now.

Instead he says, “My walker is getting wet.” 

Okay, okay.  The umbrella is now open.  I’m holding it over you and your walker (oh, never mind me over here getting soaked – thank goodness I have a hood!).

We get to the car and he makes his slow climb into it while I’m still juggling the (open) umbrella, bags, purse and now the walker which he has let go of. 

He gets in the car but I can tell he’s worried about his wet walker.  I assure him I brought a towel so he can dry it off once we get to the doctor’s office.  This seems to satisfy him.

We’re off to see Robert’s new GP since he no longer sees the New Home doctor.  Remember the guy who didn’t even realize Robert had been in the hospital, didn’t notice his pneumonia nor had any idea Robert had seizures even though he had been “treating” him for a year and a half?

Yeah, Robert has a new doctor now.  But I’m not bitter.

Robert has his own doctor now and sees her every 60 days since that is the rule of New Home (presumably following a rule set by the state).  The Most Awesome House Manager attends these appointments and is tasked with bringing the doctor’s orders prepared by the New Home nurse so Robert’s doctor can sign off on his medication refills. 

Robert has seen this GP three times now and she is really terrific.  She is friendly and personable.  She reads the chart (what a concept).  She listens to what I have to say.  She thinks it is unnecessary to see him so frequently but does anyway. 

The House Manager came to the appointment frustrated and without doctor’s orders.  Apparently, New Home nurse did not prepare the doctor’s orders this time.  Or last time.  Oh, and not the time before that.  (That’s three for three if you’re keeping score).

This is more frustrating for the House Manager than it is for me (although it’s going to get pretty frustrating very quickly if Robert runs out of his medications).   I’ve been trading calls with the area director to see how we can resolve this issue.  Unfortunately, this type of disorganization (or just plain incompetence) just creates more work for the House Manager and, frankly, is quite embarrassing in front of the doctor.

Doctor’s orders or not, by 10:00 a.m., the doctor had given Robert a clean bill of health and we had his next appointment scheduled within the 60 day timeframe.   The doctor’s office is mere minutes from my house so we made a quick stop so I could get a coffee and Robert could get a shake and we were home. 

The plan was to have an early lunch and then get to his next appointment in plenty of time (allowing for last minute bathroom breaks or paralysis in the rain).  Since I never know how long those appointments will last, I planned on having Robert over for dinner after the appointment and then taking him home. 

At the appointment, Robert did the usual battery of cognitive and physical tests.  There is always more than one doctor at these appointments (after all, it is a teaching hospital) and they confirmed he was not walking as well as he was last year.  There was a debate whether the loss of his right field of vision was encroaching on the center field of vision.  They obviously had a difference of opinion on the matter and stepped out of the room to discuss this.  When they returned, the vision tests were redone and the senior doctor’s opinion that the loss did not include the center field won out.

The right field of vision is still worse than it was last year which would have been good to know earlier in the day when I held up a banana in one hand and an apple in the other and asked Robert which he wanted to eat with his lunch.

He couldn’t even see the apple so he thought I was only holding a banana (and probably thought I was crazy for giving him a choice of a banana or . . . nothing).  Once I realized he couldn’t see the apple, I moved it so he could see it and he chose both. 

Robert does like to eat.

The appointment continued with Robert asked to write a sentence.  Usually, he writes “God loves you” but this time he added “if you are a Christian.”  I actually think he made the sentence longer because the doctor asked him to include a noun and a verb and a subject and Robert looked at him like he was speaking a foreign language.  (Note to doctor: Let’s pass on the diagram a sentence test next time).

Robert knew he was supposed to write a sentence and knew he was supposed to do something “extra” but didn’t know what.  He just decided to make it longer to appease the doctor. 

Once we were done, we walked out to the car and the rain had stopped.  Robert was convinced it was a blessing from God.  I tried to prepare him that it was still going to rain later but he wasn’t having any of it.  God stopped the rain and he wasn’t going to let me ruin the moment. 

In other words, I couldn’t rain on his parade.  Bah da bum. (I can’t resist a good pun).

I picked up a cheeseburger and fries for his dinner since by this time I was too tired to cook.  Robert got in the house and started watching the weather report while eating dinner.  After a few minutes, I realized the weather report was actually a special program because there were possible tornado sightings in the county where New Home is located. 

Great.  I get to drive 45 minutes into a rainstorm which may or may not include funnel clouds. (Apparently, I should stop questioning blessings when Robert declares one.)

After a few texts with the Most Awesome House Manager, I decided to keep Robert overnight again (shh! It’s a secret!) and take him back to New Home in time for his morning medications.  He was thrilled to stay another night and I was thrilled I didn’t have to drive into a storm (even though it meant waking up at 4:00 a.m.). 

Two appointments, lots of rain and a few surprises.  Not a bad day at all!