Category: Caregiver Emotions

I just read that all caregiver coping strategies aren’t equal.

In Every Victory Counts, a free manual for living well with Parkinson’s Disease that  has info that applies for MSA and other neurological diseases, a section on caregivers talks about the emotional impacts of caregiving on the partner.

Apparently there are two major categories of caregiver coping strategies, and based on our personality and the level of stress, we default to one or the other – either emotion- based coping or problem solving coping.

Caregiver emotion-based strategies are things like avoidance (not so successful), meditation, religion, etc – things to help with the emotions.

Caregiver problem-based strategies are things like seeking opinions from multiple providers, searching for complementary therapies, focusing on managing the disease symptoms.

According to studies, problem based coping leads to lower levels of distress in situations involving chronic disease.

I think I do both, and personally think both are necessary.

The emotional strategies help you manage the stress so you can stay present and think.  The problem strategies give you some sense of relief because they are action based and you at least feel like you can control the actions you take, if not the disease.

So today we are taking action.  I’ve made an appointment with the primary care doc about Larry’s breathing, which I wrote about yesterday and has continued to be a challenge.  I’ve recorded about twenty seconds of his labored breathing on my phone so that if, as seems to happen, the symptom doesn’t show up in the doctor’s office, I can play it for him to hear.

We’ll see what happens.

I was looking through a journal I kept two years ago.  We had moved to Florida seven months earlier but were up in Massachusetts visiting friends and consulting with my husband’s neurologist about the Florida neurologist’s diagnosis of possible ALS.  It wasn’t ALS, it was MSA, but regardless, the ever increasing symptoms were a heavy weight.

The caretaking increases and the fun continues to decrease.  I’m tired of trying to encourage him to exercise.  Tired of using my energy to try to motivate him.  Tired of his “I can do it,” and then he can’t.

I’m tired of not getting to feel good about me.  I’m tired of being so inactive – well, active in the sense of moving to help him but doing so little else.

Our situation won’t change for the better.  I have to learn to accept rather than to fight against.

I also have to start looking at what we do by myself and make what I think are smart decisions about how to make things easier for both of us.

Smart decisions.  Simplify,  Think how to make my life easier.  then also give myself respite times during the day.  A run.  Reading.  Painting.

Also I should wait until he asks for help rather than jumping to do things for him, both so we see what he needs and so I do less.

When people ask how we are, I tell them all the problems, because things keep getting worse.

But if that’s the bottom line, perhaps I’m missing something.  This is our journey, my journey.  What is there to learn?  Spiritual presence?  Acceptance?  I’ve been fighting against the disease, against my part of the journey.

What if I go with the flow of the river, ride the rapids as best I can, find the quiet pools and revel in them?

As I read this now, I realize  I’m actually in a better place now.  I am more accepting, more able to find the quiet pools in the river between the rapids.    

Some days I have nothing left.  They sneak up, seemingly without reason.

The several days previously I’d been fine for most of the day.  Five PM is when I always run out of steam these days, but until then I was good.

But yesterday I woke up with no energy.  I felt like a stuffed animal with the stuffing kicked out of it.  I sat around wondering what to do with myself.  I wasn’t sleepy – didn’t want to nap.  Didn’t want to read or watch TV.  Couldn’t face doing chores.  Didn’t feel particularly depressed, just exhausted.

There was no reason.  I slept okay.  I hadn’t any alcohol or sleeping pills the night before to slow me down.  I hadn’t overdone the day before.  There hadn’t been any catastrophes to deal with, no falls, no choking.

I was just completely washed out, my body just drooped.  I helped Larry the best I could.  I tried to nap but couldn’t.  I left all the chores for another day.

Someone who had been a caregiver to her husband with Parkinson’s Disease said to me “you won’t realize how tired you are now until this is over.”

I encountered two extremely different perspectives on being a caregiver in the last few days.

The first was in our local Herald Tribune.  Columnist Carrie Seidman wrote an article about Bob Dein, who cared for his wife after her diagnosis of Parkinson’s Disease.  The tragedy of his experience evolved from a combination of his wife’s desire to keep it a secret and her increasing cognitive impairment.

Many people associate Parkinson’s Disease only with the tremor, or bigger movements that they see from Michael J. Fox.  There are many other far more troublesome symptoms.  For some, like Bob’s wife, there are delusions and psychotic behaviors, and dementia.

The article went on to describe the enormous weight Bob carried in secret and how it wore him down to the point of planning suicide.  He wanted a way out and he couldn’t see any other way. Luckily, with grace, he brought his wife to the hospital and got help.  Unfortunately, it appeared from the article that he still felt some guilt. “I always felt that she died thinking I didn’t do what I was supposed to do.”

While my situation is no where near as grim there have been times where the thought of suicide fleetingly appeared, along with running away to a foreign country.  I never planned it, I never actively considered it.  But it came along with the moments I thought “I can’t do this anymore, I just can’t.”

Thankfully, it helps that we have at times taken advantage of support groups, some  run by the Neuro Challenge Foundation where Bob Dein is now putting his experience to good use as a board member.  We, unlike Bob, are not isolated.

I feel lucky compared to Bob in our situation of caregiving.  From day one Larry has been open about his disease.  He said he wanted to tell, because if it had been the other way around he’d want to know.  We talk about it early and often, to family, friends, sometimes even strangers if there’s a reason to explain why he looks or behaves differently.  Sharing prevents isolation, and helps others understand.

I read on some of the online discussion groups that there are many people who don’t want anyone to know.  Of course, that is ludicrous.  The outward signs of neurological diseases make others wonder about you when you walk differently, talk differently, or your facial expressions change.  Absent knowing, they make up a story – maybe he’s an alcoholic, or on drugs, or mentally ill, etc.   I also read about others who promise they will never put their loved one in a nursing home.

I’m lucky in that he’s still Larry.  His personality hasn’t changed.  He has no psychosis, no dementia.  He only had hallucinations for three days as a result of a medication that we immediately stopped.  He still has a sense of humor.  Caring for your loved one who isn’t really the same person you loved must be brutally hard.

On the other end of the caregiving spectrum is someone who was visiting with us.  For three months, he gave full time care at home to his first wife who had cancer and was paralyzed by it.  He described it as his finest hour.  He is a very spiritual man and felt that the worse his wife became the more spirituality was required of him.  I guess I think of it as grace. Even he and his wife, at some point, realized he could no longer do it alone as her condition progressed.   And three months is different than many years.

There is no glory or grace in being a caregiver for me.  If we had all the money in the world, I’d hire someone wonderful to do the caregiving so I could just be the wife.  But we don’t, so I’m the caregiver. A sometimes begrudging caregiver, mostly loving caregiver, but a reluctant caregiver nonetheless.  I’m just not much of a nurturer, and I’m certainly no martyr.

Someone said to Larry in my presence, “you know you’re not a burden to her.”  I disagreed.

“Of course he’s a burden, or at least his disease is a burden,” I said.  “Let’s not sugar coat this.”  The person looked dismayed.  “It’s a burden I am choosing, now, because I love him,”  I went on to say.   “I know he would do it for me in a heartbeat.”

There may come a day, however, when the burden will be too much, that we will  have to consider other options, including a nursing home, as hard as that decision might be.  I can’t promise it will never happen.  I only hope that if I can’t see the time has come that someone else will help us see it.