No, You May NOT Make a Suggestion

My husband is a wonderful co-caregiver. We make a terrific team and it warms my heart to see Robert look at Richard with respect and admiration. I appreciate his help more than he will ever know.

But sometimes I want to strangle him.

Through thick and thin - we are a
great team!

Our morning routines are scheduled down to the minute.

Because of Richard’s back pain, he’s usually up by 4:30 a.m. (after a fitful night’s rest).

I wake up at 5:15 so I have a few minutes of me time (okay, time to go to the bathroom, pet the dogs and cat and throw on a sweater) before waking up Robert and giving him his meds at 5:30.

Richard makes breakfast for the dogs and Robert (and rarely mixes up the two).

He also packs a lunch for Robert and makes me a mocha which is greatly appreciated! Isn’t he awesome?

I strip the bed and start laundry then help Robert with his bath and hustle him to get dressed. He gets more meds at 6:00. Richard goes upstairs to shower and get dressed.

I work at wearing out the puppy and try to read a few emails.

By 6:40, Robert is heading to the dining room table for breakfast and Richard is back downstairs.

My turn to get ready for work. I run upstairs while Robert eats breakfast and reads his Jeopardy question of the day from his day calendar.

By 7:15 Robert needs to be back in the bathroom to brush his teeth and, if there’s time, shave.

Oh, yeah, there are more meds at 7:15.

The van arrives anywhere between 7:40 and 7:50.  Usually Robert is on the couch by then, dodging the puppy and working his Word Search.

There is very little wiggle-room built-in. I could wake him up earlier than 5:30 but then we run the risk of him not getting enough sleep which could increase his seizures.

On a recent morning, Robert needed to use the restroom before the van arrived. Oh boy. You have to be quick, I remind him.

I run back upstairs to finish getting ready and when I return, I know there’s a problem.

He’s still in the bathroom and it’s 7:40. This can’t be good.

I open the bathroom door and immediately know there’s a problem.  I tell Robert not to touch anything. He touches his protective brief.

DO NOT TOUCH ANYTHING!

I grab new briefs and shorts and hope his shirt is unscathed (it is, thank goodness).  I ask Richard to ask the van driver if he’ll wait a couple of minutes while I clean Robert and get him dressed again. 

Richard offers to instead drive Robert to Day Program. 

No, I’m sure the driver will wait a minute. I just have to get Robert cleaned up.

I get to work wiping and cleaning.  I need more wipes; Richard brings them to me.

Robert is finally all cleaned up so I help him put on his briefs. We use two briefs on Robert so he doesn’t have as much leakage and right now I’m in too much of a rush and rip the first one as I pull it up. 

Crap (pun intended). 

I grab another brief and start over.  Richard tells me the driver said he could wait.

Awesome!

Then he says, “May I make a suggestion?”

I have a garbage can full of messy briefs, gloves and wipes, I’ve been rushing around to finish quickly and I’m still trying to get the briefs and shorts up and Robert out the door.

My eyes say, “CAN YOU MAKE A SUGGESTION?! HAVE YOU LOST YOUR FREAKING MIND? I’M UP TO MY ELBOWS IN POOP, HERE, SO NO, YOU CANNOT MAKE A SUGGESTION!!”

My mouth says nothing.

He makes his suggestion and I think I’m going to lose my mind.

What’s funny (now that several days have passed) is every other time I help Robert get dressed, I do it the way Richard suggested (put on both briefs and shorts all at once and then pull up). I do it that way every single time.

Except this once. 

Now (since several days have passed) I can appreciate the help he did give me that morning.

Since several days have passed, I can again remember how grateful I am for him and for being the best co-caregiver I could ask for.

But, no, you may not make a suggestion.

It’s still too soon.

Co-Caregiving: Recognizing the Pitfalls and Avoiding the Sinkholes

I have to break it to you: Co-Caregiving is not all roses, sunshine and success. 

Yep, there are bad days.  On my good days, I will break down that bad day (or days) into moments and realize we had some bad moments. 

Co-caregivers need to have some fun - and kisses!

Of course, who wants to be so rational on a bad day?? 

Co-caregiving situations can vary and since the relationships vary too, so do the pitfalls.  My husband, Richard, and I are co-caregivers for my brother, Robert.  I help Richard with some of the caregiving for his mom but would actually classify him and his brothers as co-caregivers for her. 

Siblings can be co-caregivers for a parent; friends can be co-caregivers for a neighbor and spouses can be co-caregivers for a relative or friend. Each relationship brings its own dynamic and issues to the situation.

Is there sibling rivalry between the co-caregiving siblings?  You can bet those hurt feelings and unhealthy communication styles learned while growing up will show themselves while caregiving.

Neighbors may be kind enough to step up to help someone they have lived next door to for many years but they may not like the other neighbor who is helping also.  Those differences and problems will show up in co-caregiving.

Spouses as co-caregivers?  If you’re past the honeymoon phase then you have been married long enough to know what hot buttons set off your spouse.  Trust me; caregiving will not make those sensitive issues go away.

Many of the pitfalls co-caregivers fall into are due to what’s going on in their relationship anyway.  The good news is, if overcome, these can easily turn into successes. 

Dueling Expectations.  Expectations can be unrealistic to begin with but when there are two people with different expectations and they don’t talk to each other about those expectations, it can lead to problems. 

Richard and I don’t have a huge problem with this particular pitfall but we do have different expectations about the decline of Robert (at least the timetable of an expected decline). What we’ve done right is discuss these differences.  Richard sees Robert declining at a faster rate than I do and wants me to be prepared to provide a higher level care for him when it is time. He worries I won’t know when it’s time to find a facility for Robert again.  I disagree with the rate of decline Robert is experiencing and actually think it has stabilized since we have taken over his care full-time.

I am confident, however, Richard and I will be able to discuss these expectations and Robert’s need for additional care as that becomes necessary.

Solution. The most important way to avoid falling into a sinkhole with this particular potential problem is to have a discussion about expectations before committing to caregiving and continue the discussion while caregiving.  It’s important to keep an ongoing dialogue with your co-caregiver about pretty much everything.

Power Struggle.   The beauty of having two control freaks as co-caregivers is we can get stuff done!  Where trouble might happen – theoretically speaking, of course – is when we both have our own way of doing something and the other person’s way isn’t “right.” 

Not that this ever happens to us . . .

For the most part, these sorts of power struggles over the way something is done can be resolved with a couple of deep breaths and remembering that how one person makes a bed isn’t necessarily worse than how another person makes a bed.

Theoretically.

The problem is with more critical aspects of caregiving.  For instance, there should not be a struggle over who talks to the doctor or how medications are dispensed. 

Solution.  If the struggle is over how someone makes a bed or does laundry, first try to understand why the other person does things a certain way.  For instance, I layer Robert’s bed with a fortune in bed pads but I do it so Robert’s overnight incontinence doesn’t cause me more work in the morning.  I wash all of his clothes in hot water so his clothes and sheets are sanitary.  However, as Richard rightly points out, “You both need to trust each other in that they can do it.” It may not look the same or be done the same way but as long as the underlying reason for doing something is taken into account, then it might be okay to let go a little.

Theoretically.

As far as the more essential parts of caregiving, the responsibility for them need to be discussed and agreed upon by the co-caregivers.  For us, Richard is the primary caregiver for his mom, so he is the point of contact with the doctors.  I am the primary caregiver for Robert so I talk with his doctors and handle his medications.  We both can be back up in a pinch but unless Richard asks me to talk to his mom’s doctors, I sit back and let him handle the conversation. His brothers do the same.

Equal Division of Responsibility.  This was counted as one of our successes but it can just as easily become an issue.  I have this neurotic need to be confident I am doing my fair share.  This can cause a problem because when I want to go to a yoga class or spend time with my daughter, I may feel that I am taking more time off than Richard has had.  This leads me to the annoying behavior of verifying with him that he doesn’t mind I go. “Are you sure? Are you sure? Are you sure?”

His response is usually, “I WOULD NOT HAVE SAID ‘NO PROBLEM’ IF I HAD A PROBLEM." (Yeah, those caps are all his). 

Solution.  Communicate with each other. If I ask if Richard minds staying with Robert while I do something for myself, I need to trust his answer.  If I’m feeling overwhelmed and I feel I am doing more than my share, I have to be able to tell Richard I need help.  If Richard has had a run of doctor appointments or trips to the hospital with his mom, he has to be able to raise the white flag and ask his brothers or me to step in for a day or two. 

Attitude adjustments.  This is a news flash to absolutely no one but I’ll mention it anyway: I am a pretty serious person.  I am focused, committed, driven and need to sometimes be reminded to laugh a little.  On the other hand, Richard loves to joke around (yes, even when I’m trying to stay serious) yet if something bothers him, he will hang on to it like a dog with a bone. He stews, it festers, unpleasantness ensues. 

(I don’t like admitting these things to myself much less in a public forum but if we’re going to be successful co-caregivers, we have to know what might drag us into a sinkhole.)

Solution.  We both need to chill out sometimes.  Let things go. Laugh a little more. Stop taking ourselves so seriously.  After all, we don’t actually know how many more caregiving days we will have and I certainly do not want to waste them with a bad attitude.

We are new at this co-caregiving role but we seem to have more successes than pitfalls.  As we continue to work out the bugs and learn from others who have more experience with this than us, I suspect we will have more successes to share. 

Our co-caregiving style may not work for everyone (heck, it sometimes doesn’t even work for us) but we know we’re in this together and that means a lot to both of us.  What’s important is remembering to let go of the little irritants and embrace the goal: taking care of a family member or friend who can no longer take care of themselves and enjoying that role for as long as possible.

We are always looking for more examples of co-caregiving so please share what pitfalls you have been able to resolve in your caregiving experience. 

Co-Caregiving: Tips for Success

Our caregiving situation is not unusual.  According to a 2009 study conducted by the National Alliance for Caregiving in collaboration with AARP, approximately one-third of caregivers care for two or more people.  

The Team: Trish and Richard with Robert in the middle

In our own situation, I am the primary caregiver for my brother, Robert, and Richard is the primary caregiver for his mom, Carol.  To add to the mix, Richard is a caree himself because of his chronic back pain.  We’re each helping to care for at least two people and we’re doing so together.

Becoming co-caregivers didn’t happen overnight.  It took many years for Richard and I to develop into a successful co-caregiving team. 

This is not to say we are always successful but we will discuss the challenges and pitfalls of co-caregiving in the next post.  For now, let’s talk about what works.

Knowing Our Strengths.  It is important for us to not only know our own strengths but the other co-caregiver’s strengths as well.  Fortunately, we are both organized and prefer “neat and tidy” to chaos (just ask those kids we raised).  Richard tends to nest better than I do yet we all benefit from it!  Before Robert moved in, Richard was on not only a cleaning spree but took up canning jam and spaghetti sauce as well as trying his hand at pickling asparagus.  I’m sure I gained five pounds before Robert even moved in with his never-ending supply of Rocky Road ice cream in the freezer (not that I ever eat ice cream . . . ).

While Richard was canning and cleaning, I was creating spreadsheets for the medication and supplies, ordering supplies and contacting all the agencies we would be dealing with.  My “nesting” showed itself in organizing cabinets in our garage for Robert’s clothes and supplies. 

Recognizing Limits. This is huge.  At any time and for a  variety of reasons (bad day at work, not enough alone time, not enough sleep/food/water, woke up on the wrong side of the bed, increased back pain for Richard), either one of us can feel overwhelmed and cranky. I recognize the signs when I need a break: I’m short-tempered, snap at anyone (including the cat) and have no interest in talking with anyone. Leave me alone when I’m at my limit (seriously, I am not pleasant).  Thankfully, my husband understands this (most of the time) and knows to steer clear. When I realize I’m cranky, I have to figure out what is wrong and then take a break to correct it (eat something, take five minutes for myself) and it helps, even if for a little bit.

When Richard is at or past his limit, it is usually related to his back pain.  He’s either done too much or has a flare-up.  He knows when this is happening (usually a few minutes after the rest of us do) and he will take a nap, go to our bedroom to stretch his back or have some quiet time. 

We both are learning to recognize when the other needs a break without being accusatory or nagging.  “What the heck is the matter with you?” is not often said out loud in our house.  (I’ve been known to think it a time or two, however).

Setting Priorities.  Sometimes it feels as if I have a magical to-do list (and not in a good way).  Every time I cross one or two items off the list, five more appear in its place.  The to-do list is never, ever completely done which makes it a necessity to prioritize.  Richard and I both understand that if we are at our limits (see above) but we still have to have dinner, give Robert his meds and get him ready for bed then it may be a night to order pizza.  Sure, we prefer to have a healthy, home-cooked meal with green vegetables and fruit but sometimes the priority is giving ourselves a break instead. 

Equal Division of Responsibility.  This is very important to me.  I don’t want to feel as if I am not contributing my fair share.  Maybe it’s because we’ve been together for so long but dividing up the responsibilities when Robert moved in was seamless.  I get Robert up in the morning and get him bathed and give him his clothes for the day.  While he dresses, I unmake his bed and start a load of laundry. In the meantime, Richard makes decaf coffee for Robert and a mocha for me.  (I’m spoiled!)  He gets Robert’s breakfast ready and packs his lunch for Day Program.  We share dog duty and both see Robert off to Program in the morning.

In the afternoon, Richard greets Robert when he gets home from Day Program while I’m still at work.  He will clean up Robert if needed and gives him a snack and lets him watch television.  When I get home, I give Robert his meds and start dinner.  Richard does the clean up after dinner and I get Robert started on his bedtime routine of brushing his teeth, shaving and changing into pajamas and getting into bed. 

There aren’t that many variations on the schedule (except hubby sometimes makes dinner – especially if it’s pancake night!).  It feels like a very  fair division of duties which makes us both happy and keeps Robert well-cared for.

Communication.  I hesitate to even include communication as an important part of a successful co-caregiving team because it seems so obvious.  Common sense dictates Richard and I have to talk to one another in order to work as a cohesive unit.  As simple of a concept that is, we do need occasional reminders. I am more than willing to admit we see a therapist every now and then to keep us on track and to work through any difficult issues that come up.

Asking for Help.  I had planned to end with communication but realized something else contributes to our success as co-caregivers - being able to ask for help, either from each other or from an outsider.  We see a therapist, we both get massages to help with stress and reduce Richard’s back pain and we ask one another if we can have a few hours away.  Sometimes I will go shopping with my daughter or Richard will have coffee with his mom and brother or volunteer at the animal shelter.  Both of us have taken up yoga and are okay asking the other one to stay with Robert while we attend a class.  What we need to figure out next is how to get a break together!

It’s early in our co-caregiving journey so I am sure I will learn more of what makes us successful as we go along.  In the meantime, the next post will focus on what challenges and pitfalls we’ve run into and how we manage to not get stuck there. 

Please share your own co-caregiving tips for success!

Co-Caregiving: Developing into a Team

My husband and I work pretty well as a team.

 

We first blended our families together (me with my daughter and him with his daughter and son) and raised these three kids the best we could.  They have all turned into productive citizens and wonderful human beings.  Not that their success is because of us but I’d like to think we at least didn’t fumble too much along the way.  It’s likely they won’t need a lifetime of therapy but maybe just a few helpful sessions.  I can’t ask for more than that.

Co-caregivers: Trish and Richard on vacation

Richard and I also worked together when his back pain became unbearable.  He was rear-ended on the freeway by a drunk driver before we met and he dealt with his injuries as well as horrible pain when his son was just a newborn and daughter a toddler.  By the time we met, his pain was manageable (or so it seemed). Shortly after we married, the pain increased considerably (I try not to correlate the two events).

We worked together to get him the right pain management doctor and the right treatment that worked for him and our family.  We went through some tough trials with the various medications he was on (a few which severely adversely affected his ability to get out of bed or be the least bit pleasant when he was out of bed). 

We (and I’m including the kids here because it was truly a team effort from all of us) plowed through and, eventually, found a terrific doctor who installed Richard’s intrathecal pain pump. The amount of medications he had to take was reduced significantly and, although his pain has not completely subsided, it is at a level he (and the rest of us) can live with.  

After seventeen years together (sixteen of those married), we have developed into a pretty good team but it hasn’t always been easy. Heck, I was ready to lock him out of the house plenty of times during the trial and error period with his medications and the kids would have thanked me!

There was a brief stint as co-caregivers during my mom’s illness before she died as well as during the death of my dad.  We have come to realize our co-caregiving experience is neither perfect nor idyllic but it does work for us and we have been able to smooth out the rough spots over the years. All of these experiences have prepared us for our next co-caregiving experience: caring for Robert and, to a lesser extent, Richard’s mom.

Richard was always on board with helping care for Robert when Robert could no longer live independently and, eventually, with bringing him into our home to care for him. We each had our concerns, however.

I worried that with Richard’s back problems, the extra work with Robert would be too much for him.  Robert sometimes ends up on the floor after a seizure and a big concern for me was Richard hurting his back when trying to help Robert get up. 

Richard’s concerns centered on the logistics of Robert being here. Would Robert be able to stay at his Day Program and will transportation be available for him? Will Robert be happy with the sleeping arrangements since we don’t have an extra bedroom downstairs and he has to sleep on the sofa sleeper?  Will there be back-up help if we need it? 

Our first step was to discuss these concerns and then we had to rely on each other for reassurance.  I needed Richard to convince me he would be honest about any increase in his back pain and I had to reassure him that I confirmed his program and transportation would stay the same and back-up care would be arranged.

We both had to rely on Robert to let us know if the sofa sleeper was satisfactory long-term since he already had adjusted to it for short-term visits.  We explained to Robert that he wouldn’t have a bedroom if he lived with us and he replied, “I know; it’s okay.”

We had our answer from Robert and our reassurance to each other which meant only one thing: the real work was about to begin.

In the next post I will talk about what works for us to make co-caregiving successful.  In the next few days, I’ll also discuss the pitfalls of co-caregiving and how to overcome those without too much heartache.

In the meantime, I invite you to tell us about your own co-caregiving experiences and what works (or doesn’t work) for you.