I am sorry I have been absent for some weeks – I am sorry I have not been as prolific as usual.  Life happens, things get in the way….well….hmmm….. I do hope somebody missed me .

A day or so ago, I wrote on Face Book that I was feeling sad.  Just that.  One statement.     “I feel  sad”….3 little  words … and I received  so many lovely and supportive words from friends and colleagues saying that “this too shall pass” and that I was such a comfort and a wonderful caregiver and daughter to my parents….So my statement of sadness was interpreted as mourning the loss of my parents and my brother – those who have died and moved   on leaving me here, alone, feeling sad.

Well, the fact is that I just felt plain old sad.  Not because I am approaching the anniversary of my mom’s passing, which is the most recent and still the most raw, in a sense, but it was just a bad old day and I woke up and could not start the day with all kinds of happy and encouraging words on this new wonderful  and invasive thing called social media.  In the old days (dare I date myself) you had two choices – to answer the phone or not – and to answer the doorbell or not.  Nowadays we are almost stripped naked on a daily basis when we partake in social media – whether it be Face Book, Twitter, MySpace –or  things I do not even know about yet – phones and apps – soon I think people will know where you are and what you are doing just from your phone – because it will be like a GPS.  I would like to go to the Ladies Room in private, thank you.….

So, my word to caregivers is – It is OK to just feel bad or sad sometimes.  Just decide if you want to put it out there for everyone to see, or read.  Some days, or feelings,  are best left private,  when we stay in our pajamas, make sure whomever  we are caring for are well attended to and can stay in their ‘jammies too if they want, just make sure all medications are taken and food is provided and eaten.  Maybe this is the day to watch a great old movie together, laugh or cry together, eat cereal for dinner if you want, tuck your loved one in and call it a day.  For tomorrow blooms fresh and you will awake and say – I am ready to take on the world and you know what?  I even think I heard the birds tweeting – so maybe that damn groundhog was right and spring is on its way and I feel a spring coming back into my step.  And all the power to you, because every day is an adventure and a challenge and you are blessed for taking it on every day…. ……”

Maryellen

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.”