Co-Caregiving: Recognizing the Pitfalls and Avoiding the Sinkholes

(This is reprinted from @Trish’s personal website www.robertssister.com)

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 fun a few kisses

Co-caregivers need to have fun a few kisses (that’s a sea lion kiss)

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

Co-caregiving situations can vary and since the relationships vary, 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 (@kreisler) 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.

Profile photo of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

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