Ironically, I know exactly what I didn’t know in my dream.  I know that I have a lot of guilt over the circumstances of his death .  He wasn’t treated well at the hospital; I HATED seeing him propped up in a chair.  I wasn’t there when he passed away in the middle of the night.  Nobody was.  I wish I could change that and therefore I go over and over it in my mind, trying to rewrite the past but realizing that it is impossible to do so. 

According to Dr. Vickie Rackner, author and keynote speaker, “Guilt is a pain that tells you there’s a mismatch between the person you’d like to be and the person you were in that moment.”  At “that moment”, I would have liked to have been the person who stayed at the bedside 24/7 and the person who KNEW to argue for hospice care and kept my father at home .  I regret that I wasn’t.

Dr. Rackner also states that regret and guilt are distant cousins.  Certainly they are related because regret often leads to guilt.

In the book, “The Emotional survival Guide for Caregivers” by Alexis Abramson, Barry J. Jacobs, PsyD states that when a loved one dies, guilt is the 2nd most predominant feeling in a former caregivers’ experience.  There is guilt that they didn’t do enough, guilt that they are now “free” of the burden of caregiving, guilt that they have their own life back.  This guilt can last 6 months or even longer. It comes and goes but is eventually replaced by the knowledge that the disease process and God’s plan were the biggest factors overall.

Guilt is a part of all aspects of caregiving.  Caregivers are often overburdened and torn between what they need to accomplish for their employer, their spouse, their family and their care recipient.  What was NOT accomplished often leads to feelings of guilt. ( I missed the soccer game; I missed spending quiet time with my spouse; I ran in, dropped off groceries, and ran out of my Mother’s house without stopping to chat at length.)  When I was caregiving for my father, I would often feel bad that I didn’t make the time to sit with him and play cribbage or watch T.V. as often as he wished I would.  There was just too much to do.  We DID play Cribbage at least 2 hours almost every night but as he always said “I have all day !”  He did; I didn’t.

Anger can also lead to feelings of guilt.  We feel badly about being angry that we are stressed, overwhelmed, over-worked, tired, etc., so then we feel guilty which leads to anger back to guilt and more anger….a never-ending circle.  Guilt will also cause us not to take care of ourselves, perhaps because we believe we don’t deserve the care  – which of course, will lead to anger, to guilt…and you get the picture.

In order to get rid of the guilt, it is important to acknowledge that feelings are JUST feelings, nothing more.  You must forgive yourself for your imperfections.  You are only human and no human is perfect.

While you cannot change events or all of the activities in your caregiving role, you CAN change your feelings about them and you may be able to change some of the actual activities themselves.  For instance, if you are finding it difficult to have any quality time with your care recipient because you are too busy doing chores, hire some of them out.  (If expense is a problem, The Area Agency on Aging has a scholarship program for a certain number of hours per month where caregivers can do light housework).  (Meals on Wheels may be available in your area to deliver some hot food to your loved one or perhaps your church may have a program.) When you are able to spend some time with your loved one, you can get to (RE)know them better, and enjoy them.

In the last couple of years, there has been a lot of talk surrounding the book The Secret and the laws of attraction.  Part of that philosophy involves a change in the way you look at the world and your role in it.  You CAN change the way you perceive your caregiving role from one of burden to one of gratitude for the experience.  Changing your perception will cause you to (consciously or subconsciously) change your actions in order to align the two with each other.

You must remember that it is absolutely imperative to take care of yourself and to continue to enjoy life.  Do not feel guilty about those things that you do just for yourself (I’m speaking in moderation, of course).  They will make you a happier person to be around. Do not become a matyr; it does nobody any good. 

So how does this all relate to my dream and my feelings of guilt ?  As I thought it through, I decided that I did the best that I could with the knowledge that I had at the time, so I forgave myself .  I had cared for my father in my home up until the last week and a half of his life and I am proud and grateful that I was able to do that.

With the holidays approaching, I wanted to mention something else that Dr. Vicky Rackner stated.  “Consider giving yourself a holiday gift.  Forgive yourself for one choice that brought you guilt.  Forgive one other person for one action that disappointed you.  Forgive the world for the bolt of unfairness that stood between you and an old dream.”

I hope that you can do that.

We see them once in a while on birthdays or Easter or something like that but never aside from that.

If I lived in the same town as my grandparents I would not claim being busy as an excuse. You make some time when you want to. I would at least call or drop over to see them every couple of months. We did for our parents and grandparents. We never regret we did, we know we would regret it had we not have.

The are typical religious people. Big on talk, church going but not the best Christians in my mind. I know better Christians who never go near a church. Even if they weren’t the religious type, we always made time for our grandparents, it is the respectful, loving thing to do. No more we guess.

It makes us so very sad. Actions not words are what count.

They never stop by.  We assume we are hopeless/worthless to them anyway.

This is why Olive and I do not want a church service or anything “if” we die. We don’t want people showing up after we are dead that would never take the time to visit while we are alive. I am sure our granddaughter and husband would be at the funeral if we had one. No thank you. That won’t be when we needed them, we need them now.”

Over time, the caregiver child  frequently finds the necessity to leave the work force as the labors of care giving become too time consuming and/or stressful.  Vacations and sick leave had been utilized when a parent was hospitalized, leaves of absence were taken during extended illnesses and recovery of their loved-one.   I have noted on many forums, adult children asking advice on whether or not it was fair to use their loved one’s funds to help ease the financial burden that care giving  often causes.  As the aging population in the United States increases, more and more workers in their “sandwich years” are finding it necessary to leave the work force.

None of us feel comfortable accepting payment for caring for our parents or loved ones.  After all, they cared for us as we grew into adulthood; shouldn’t we be there to care for them too?  We would all love to be in a financial position to provide such care without compensation, but the truth of the matter is, most of us are not in that position.  Most of us need some kind of an income to support ourselves and our family. 

When a caregiver leaves the work force to care for an aging parent, they are giving up many things: an income, of course, health insurance, social security contributions (which will cause a reflection in their own social security benefits later in life), employer contributions to their retirement plan, and the chance for advancement in their career.  In addition, there in an increase in food, utility, and fuel costs in the caregiving home.

Elder law attorneys are recognizing this fact and are beginning to address the issue of compensation for the caregiving child as they work with  aging parent to have their affairs are arranged.  A parent will often suggest that a caregiving child be left an additional bequest in his or her will in recognition of the services that he/she provided.  Mr. Bernhardt and Mr. Wytychak, an elder law attorney in northern Idaho state that this is not a good idea for several reasons.

First of all, with the high cost of long-term care, there is no guarantee that there will be any funds left over to pass along. 

 Secondly, an unequal bequest may cause jealousy amongst the other siblings who would receive less and who often can’t comprehend the stresses and financial burdens of caregiving.

Thirdly, if one is working towards “spending down” so that Medicaid will be available for additional long term care, ” gifts” are not allowed to be given to ANY child (except by trust to child with a long-term disability), without penalty.

Therefore, the best strategy is to set up a caregiver contract between the infirmed parent and the caregiving child, drafted by an attorney who represents the elder and reviewed by an attorney who represents the caregiver (although the latter is not necessary).  The agreement details all services that the caregiver will provide, which costs may be charged to the elder (medications, personal toiletries, gifts to grandchildren, etc), and the amount of compensation. 

The contract is very useful because it is evidence that the payments from parent to child are not gifts and therefore cannot cause a penalty when applying for Medicaid.  It is also an attempt to reduce friction between family members because the parent is clearly stating their intention. (Friction often still exists, though, because, again, the siblings do not see the day to day activities of the caregiver.)

When a caregiving contract is put into place, the caregiver who is receiving the compensation, must supply a financial report to the courts once a year in order to show that no additional monies are being removed from the infirmed parent’s account.  This accountability is actually a benefit to the elder, as well.

In the experience of most elder law attorneys, parents realize that they are asking a lot from a caregiving child and are greatful for the care that they are receiving (although many times they lose the ability to say so).  You must NOT feel guilty.  If you are caring for an aging or infirmed parent, please consider consulting a reputable elder law attorney for advice on how to proceed.

How does one deal with the guilt?

Be realistic. Take comfort in the fact that you’re doing the best with what you have available to you. If adult diapers are not something you can handle, especially when you are female and they belong to your FATHER, then hiring a caregiver or considering assisted living may be the BEST alternative.

 Be aware that you have rights as a caregiver and that caring for a parent should NOT make you sick nor give up your own life; therefore, you should not feel guilty for taking some time for yourself and for your family.

Be gentle with yourself.  Guilt is like the other (numerous) emotions that come with caregiving.  It is like a cloud floating by, with another cloud of emotion next in line.