Difficult Seasons

There is nothing about caregiving that causes more anxiety and stress and that strains relationships more than having to make decisions about what to do or not do than when there’s not ready agreement between all parties.

Here are some difficult decision situations people I know have faced:

• A dad on dialysis, suffering unpleasant side effects and low quality of life, wants to discontinue dialysis, recognizing that it will cause his death.  His caregiver daughter is faced with the decision to follow her dad’s wishes and let him die, or to fight to continue dialysis and keep him alive.
• A wife has surgery for a brain tumor.  Without undergoing chemo and radiation, she’s given less than six months to live.  With treatment she has a chance to live longer, but with the side effects of the treatments.  She doesn’t want to undergo the treatments.  Her caregiver husband and her adult children want her to fight for longer life.
• A wife is the caregiver for her husband, and his condition becomes such that she is struggling to provide care in their home.  As a result, her own health is declining.  Her adult children are in fact becoming caregivers for both of their parents, and want them to move into an assisted living facility.  The mom refuses to move.
• A mom in a distant state has had several serious medical issues, and her physicians now say that she needs to be in assisted living.  She doesn’t want to move out of her apartment and away from her friends.  Her daughters want her to move near them so that they can provide needed care.

In serious situations like these, who gets to make the decision?  The caregiver or the person needing care?

A wise person once told me that the answer to almost every question is, “It depends.”  But that answer is not very satisfying.

So here’s a general principle:  The person who has the illness or disability requiring care gets to make her own decision, unless there are overwhelming reasons to force her to proceed against her will.

As the caregiver, you don’t get to make the decision just because you’re not ready to let him go or just because it would simplify your life or just because you think she would be better off.  Even feeling strongly that the person you’re caring for is making the wrong decision doesn’t give you the right to make the decision.  Yet there are situations where the caregiver will rightly intervene and force a course of action that is against the will of the care receiver.

How would you have handled the decisions in the situations above?  Here’s how the folks involved resolved them:

• Following a lot of discussion, prayer, and consultation with physicians and trusted friends, the daughter blessed her dad’s decision to discontinue dialysis.
• Given some time, the wife and mother decided to undergo the treatments and had an extended period with good quality of life.
• After a lot of stops and starts, the mom was finally able to make the decision on her own to move out of her home into an assisted living facility.
• The daughters together agreed to move their mother to an assisted living facility near their home, even though it was against her will.  While it has been extremely difficult on all involved, further serious health crises have confirmed the wisdom of the decision.

If you’ve faced a decision like these and would like to share it, it would be great if you’d write about it in the comments or give us a link to your blog or other site.

A feeling of independence is even more important when you’ve lost some of the ability to take care of all of your daily needs.  It is a major factor in quality of life for the care receiver.

So as a care giver, it’s vitally important that you find as many ways as possible to help the person you’re caring for feel independent.

1. Some of helping them feel independent is through how you communicate with them.  Asking his  permission for even simple things, offering choices instead of commands, and taking his or her desires about things into account are big.
2. If she is not able to drive to medical appointments or to go shopping, help find alternatives that she can manage on her own.  Most independent and assisted living centers provide some type of transportation service.  Or, in many cities, there are commercial or governmental services specifically for older adults that will provide transportation for a reasonable fee.  This allows her to regain a measure of control over her life, as she can handle these activities on her own, without having to depend on you.
3. Let him do everything he can or wants to try to do on his own.  If he can do his own laundry, don’t do it for him.  If she can manage her own finances, don’t do it for her.  If he can make his own doctor appointments or handle his own insurance issues, let him.  Being able to handle these kinds of routine tasks promotes good self esteem.  When you take them away when she could do them, you take away an important source of good self image.  It’s fine to offer to assist, as long as you let her do it her way.

And I’m sure you can think of other ways to promote a feeling of independence for the person you’re caring for.

Here’s the principle:  Allow the person you’re caring for as much independence as they can handle, even when it makes you uncomfortable. Allow the person you’re caring for to live their life with as little interference from you as possible, but with as much support as needed. Don’t make the person you’re caring for more dependent on you than is absolutely necessary.

A lot of our problems as care givers are of our own making because of our style of communicating with the person we’re caring for.

In the last several posts, I’ve written about the importance of not assuming the role of parent to the one you’re caring for.  It turns out that we often sound like a parent because of the way we attempt to communicate.  We can avoid that by intentionally adopting a different communication style.

Here are some general guidelines that will help you.

1. Avoid phrases such as:  “You should …”; “You need to …”;  “You’re going to have to …”;  “If you don’t … then …”;  “Why didn’t you …?”  “I can’t believe you …”
2. Use phrases such as:  “I’m concerned about …  Would it be okay if we talked about that?”  “I’ve noticed that you’re not …  Would you be willing to discuss why?”  “This doesn’t seem to be working very well.  How do you feel about it?  Can we explore some other options together?”

This works for several very simple reasons:

• You’re showing respect.
• By asking permission, you’re restoring a feeling of control to someone who likely is struggling with feeling that they are losing control of their own life.
• Stating your observations, feelings, and guesses leaves the door open to further constructive discussion.

This approach does take more effort and thought.  And asking permission always carries a risk that the other person will say no.  But in my experience, care givers who follow this communication strategy find that it lowers the stress levels on both sides and results in achieving good outcomes.

Without doubt, the best preparation for becoming some one’s care giver is to develop an adult-adult relationship with them before you become his or her care giver.

I didn’t realize how important that was until I had already become Dad’s caregiver.  During my adult life, we’d spent lots of holidays and vacation time visiting together, and we’ve always gotten along well.  But we never had the opportunity to work together on a project, to do problem solving together, to share a responsibility as a team.

Our relationship was typical father-son.  It was built on mutual respect, love, and centered around family and church.  I didn’t give him advice unless he asked, and he didn’t give me advice unless I asked (mostly anyway).

After Mom died, our relationship did change a little.  We’d get together at least once a week for lunch, and our conversations did begin to evolve to occasional advice seeking and problem solving.

So when a health crisis occurred that required me to take some decision-making responsibilities for Dad and required a drastic change in where and how he lived, we both struggled to figure out how to relate and how to problem solve under these new conditions.  The situation was further complicated by the fact that his second wife Carol, who had recently started treatment for advanced ovarian cancer and was being cared for by her children in their home in another city, was part of the decision-making process.

I can remember vividly how uncomfortable I felt having to try to get Dad to do what doctors and family and I thought he needed to do.  I decided early on to do my best not to tell him what to do.  I attempted to become his advisor, and generally that worked quite well.

I investigated options, such as housing, and presented them to him as options, something for him to consider.  He responded well to that, and as his physical condition improved, we began working on issues that needed addressing together.  As things stabilized in his life, he increasingly became able to resume essentially all of his own decision making within his new constraints.  And by spending lots of time together and working together on problem solving, we’ve developed an adult-adult relationship that’s richer than just the father-son relationship we had before.

Looking back, there are some things I have learned, and some things I would do differently:

1. I was totally unprepared to become a care giver for Dad, and it is only through God’s providence that things have worked as well as they have.
2. If I had it to do over, I would be more intentional about working to develop an adult-adult relationship that included joint problem solving experience and teamwork before we encountered a crisis.
3. I would do even more than I did to make him feel more independent earlier, because the more independent of my help he felt, the more things he became able to handle on his own.

Maybe you can learn from my story and accept my encouragement to begin and continue working on nourishing your relationships in preparation for times of crisis.

You don’t become your parent’s parent, or your spouse’s parent, or your sibling’s parent when you become their caregiver.  We talked about why we don’t in the previous post.  And we talked about what to do instead.  But sometimes  an actual story does a better job of making the point.

The wife had become the care giver for her husband.

Her approach to care giving was to attempt to make him do what he was supposed to do.  She would remind him, then cajole him, then give him orders, then lecture him, and so forth.

And guess what?  He would refuse to take his medicine or do his therapy or whatever.

She was quite upset by the situation, became clinically depressed, and started having medical issues of her own.  And he’d just sit at home not wanting to do anything.

Her real breakthrough as a care giver came when she asked his doctor one day what was wrong with her husband, and the doctor said, “I think it’s you!”  Over time, with effective mentoring and coaching and treatment for her depression, she stopped trying to make her husband take care of himself.  And predictably, when she changed, he started taking responsibility for himself.

What happened here is actually simple.  She had assumed the role of parent, so he assumed the role of the rebellious child.  When she quit “parenting,” he quit rebelling.

I don’t know who came up with the phrase, “I’ve become my parent’s parent.”  But my advice is to try to wipe that phrase, and more importantly, that concept of care giving, from your mind.

As a substitute, you might try replacing it with, “I’m honoring my parent.”  Or, “I’m honoring my spouse.”  Or, “I’m honoring my sibling.”  Or, “I’m honoring whoever I’m caring for.”