The Roller Coaster of Caregiving
By Jane Cassily Knapp, RN, LCSWC

 

The decisions to become a caregiver are usually made in crisis situations. We rarely have time to consider the ramifications of these decisions nor do we really fully understand that there are any ramifications. What could be so difficult about caring for someone we love?

In the ideal situation a family meeting should be called to get an understanding from all involved as to what the primary caregiver’s role will be. What are each family member’s expectations and understanding of caregiving? What is the family’s plan for support to the caregiver? Scheduled assistance and relief to the caregiver should be routinely incorporated into the weekly schedule from the onset.

The caregiving role is a pivotal one: You become the center person, the “expert” in the care of someone. Everyone else in the family is required to go through you to find out what is now needed for this person. Your new position forever changes your role with each family member.

It’s a little like working with the same group of people on your job for 20 years and suddenly being promoted to the boss. People who were your comrades and trusted support system are now critical of you and your actions. They don’t want your job but they’re jealous that you have it. They may also feel that through your new caregiving role you now hold control over their actions to some extent.

Avoid pit falls……….. Dispel misunderstandings/ myths regarding your desire to be the caregiver.  Others not available or not wanting the responsibility to caregive may misunderstand your motives. Often this is rooted in their guilt over not taking on this role themselves. They begin to question………”what is your hidden agenda for caregiving?”

You must want the estate or checking account, etc. If this is allowed to brew you may find yourself in the midst of serious family conflict.

 You think everyone should be so grateful to you for the incredibly generous gift you are providing the family and suddenly you become very hurt by these knives of jealousy and misperceptions.

Usually caregivers are by nature giving people. This additional responsibility seems natural to them. These persons occasionally suffer from co-dependency. This means that they have had a history of setting poor boundaries and healthy limits to protect themselves from being victimized or exhausted.

Others, not attuned to this, often misunderstand. They may have healthier boundaries and would never allow themselves to do more than they feel they can do. Therefore, they assume that the caregiver is not going to work harder than they can tolerate. If an exhausted caregiver continues to try to provide everything needed without asking for help, those around them assume that they are fine. If they weren’t fine they would stop and ask for help.  The caregiver may become angry and feel abused and victimized. They feel that others should know that they need help but if you don’t ask, no one will know. The people around you may not be unwilling or uncaring; they just aren’t mind readers. No one enjoys being related to a martyr.

When a dependent family member first moves into your home for care giving there is often a “honeymoon” period.

Everyone is polite, friendly and appreciative. This new change in the family dynamics can temporarily make even old persistent family problems seem like they have been resolved or forgotten. Everyone puts his or her best foot forward.

 However, as many of you are aware, this is often short lived.  The “new” family member may offer “suggestions” about how your family should do things; especially concerning how you should raise your children. There is no longer just you and your husband watching TV in the evening. His mother is sitting in between.  Your children compete for attention by fighting with each other while you’re changing grandpa’s diapers. They may let you know how they feel about the new member in their home by acting out at school; grades may drop. All these wonderful things add to your exhaustion and frustration. Your mother-in-law may re-arrange your furniture or your kitchen closets. And just to make life more interesting, you are up every 3-4 hours to take your new family member to the bathroom only to get there and have them say, “I guess it was just a false call.”

There are many positive gifts to be had by participating in caregiving. You have the unique opportunity to get to know the dependent person in a very intimate and wonderful way. You can experience tremendous satisfaction from caregiving. You become the model for family members and others who take on the caregiving experience.

You provide the gift of allowing the dependent person to live in a home environment and to be taken care of by someone who loves them and who will honestly work to maintain their privacy, security, and personhood.

Family caregivers have history with the dependent person. They knew them before their many losses. They knew and respected the personhood of their past. Therefore they don’t only see them as who they appear in the present. This provides a connection and intimacy that is very comforting.

Family caregivers also provide a sense of comfort and relief to the other family members of the dependent person by the fact that they now have the peace of mind that their dependent loved one is being cared for by someone who really cares for them.

We have mentioned:

  • Anger

  • Ambivalence

  • Exhaustion

  • Frustration

  • Guilt

As difficult feelings common to the family members of a dependent person and the caregiving role.

Now let’s look at

Scorekeeping—Who did what, when? Who did more? Whose turn is it?  Who never takes a turn?  Who is the most exhausted? There is no equality in caregiving as in parenting. Be careful not to fall into this pit. It will only add to further family discord.

Advise Givers—Sometimes those family members who, for various reasons, are not the primary caregivers attempt to make themselves feel less guilty or more involved than they actually are by stopping by weekly or monthly to loudly advise the caregiver regarding all the things you aren’t doing adequately for “Mom” or all the ways in which you need to improve your caregiving.

Don’t allow yourself to be hurt by these people. Just let them vent. They are only trying to take care of themselves. It’s not really about you or the quality of your caregiving. You may choose to respond by saying, “I know it must be very hard for you to not be able to be here as often as you would like to be and not to be able to do the things for Mom that you wish you could.”

Overcoming Losses

One thing that is often overlooked by the caregiver and other family members is the impact of the losses for both the caregiver and the dependent family member. A wife may miss the husband she has known and loved for many years. She experiences the loss of the friend with whom she has shared interests and confidences. Who was her companion for parties, grocery shopping, going to church or just taking a walk or watching TV together. Not only have you lost your friend but now you may have to take on the roles that this person used to hold within the relationship
like financial responsibilities and household jobs.

You may feel guilty, angry, and sad for feeling like “this isn’t the person I married.”

The dependent loved one experiences many losses as well. Their lifestyle, their independence, their jobs (at home and/ or at work), their health, friendships with co-workers or others are now cut off. Others now see them as invalids but they may feel like screaming “I’m in here and I’m a person!”  It’s very hard to tolerate a constant state of dependence.

On whom do we find it easiest to take out our frustrations? The person we love, of course. When we are totally dependent on that person, we often take out our anger and frustrations. This can make for very difficult times.

Ambivalence—We may find ourselves saying “I want to do this…I don’t want to do this…..I wish this was over…” Does that mean I don’t love this person? “Sometimes I daydream about their funeral. Sometimes I wish they had died while they were independent and not survived to be in this state.  What’s wrong with me….sometimes I wish they were dead.” Does that mean I’m terrible?

You are not terrible for thinking these thoughts. You are not wishing the person you love is gone; you are wishing this state of constant caregiving and decreased quality of life for your loved one are gone. You are wishing your exhaustion and frustration are gone. That is why you need to improve your self caregiving. Your dependent loved one is counting on you to be there for them but you can’t do this if you don’t take care of yourself.

 What you can do to assist in caregiving and to care for yourself.

  • Allow others to help you.

  • Be assertive of your needs.

  • Set healthy boundaries.

  • Use respite services.

  • Participate in support groups and church activities.

  •  Exercise.

  • Take time out for yourself and your family; take vacations.

  • Make sure you have planned caregiver relief routinely into your weekly schedule.
    (i.e. Every Tues. from 2-5 my sister Mary comes in to care for Joe. Or my friend from the church comes in every Wed. 1-3.) Don’t wait until you are exhausted to ask for relief!

  • Maintain your own health. Keep routinely scheduled doctor appointments, counseling appointments; get adequate sleep and nutrition.

  • Use a “baby” monitor so that you have peace of mind while working in the yard or doing anything out of ears’ length of your loved one.

  • Use a monitor if applicable so that you can safely leave your loved one for short periods.

  •  Invite friends in.

  • Create a private space for you and your family within your home for socialization away from the dependent person.

  •  Allow yourself to vent your frustrations.

  • Don’t beat yourself up with guilt.

  • Compliment yourself for the tremendous caregiving job you are doing.

 

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