What I noticed though, after just a couple of days of having her here with me, is the return to the flood of emotions that comes with caregiving, and although I am not providing any direct caregiving to her, they have still returned.

Guilt is a big one, even now.  I’ve received several invitations for outings or for business meetings and just as I’m about to respond with a “yes”, I think, “Oh no, I can’t do that.  Mom’s here.”  Some of the events are easily justifiable but invitations to lunch or an evening out listening to a new band seem like I’d be abandoning her. 

Even now, I feel badly that I’m upstairs working on my computer instead of downstairs entertaining her. Why do I impose this guilt upon myself?

Another emotion is a bit of frustration.  My mother is an artist and has done some interior design.  While she sits at the table perusing all the magazines I have saved for her, she is analyzing my house for improvements.  One conversation went something like this:

Mom:  You should refinish this table.

Me:  No, I think I’m just going to cover it with a table cloth. I’m going to refinish the (80′s pickled oak) chairs though.

Mom:  No, the chairs are fine.  You’ll want to leave them the way they are. But we’ll paint the table then.  Brown, I think.

Me:  No, Mom.  The table is old.  I’ll just cover it.

SILENCE….then…

Mom: Alright then, we’ll go to the paint store and pick out a nice brown for the table.

ME:   sigh….alright

(We won’t get to it; she’ll have many more projects planned by then.  Well, she already does.  You should hear her plans for my dining room ceiling – NICE but I don’t have the time for THAT.)

Then there is worry.  Because I have a home with 3 steps that go down to the patio (clearly I didn’t plan well for aging-in-place) and her balance is a bit off, I worry every time she goes out the door.  When she’s carrying her coffee cup to the table inside, I just cringe.   Should I let her carry it or hover over her all day long in case whe wants more coffee?  Is she okay alone in the shower?  I don’t have grab bars on the one that she is using but she doesn’t want to use the one that I had outfitted for safety for my Dad because it really is inconvenient.

Sadness is another emotion of caregiving. This past week end we went to an art festival here in town and it was clearly too much for her.  I had been used to seeing  Mom be able to do everything and suddenly (to me, anyway) she is slowing down.   Of course, it makes me sad to see this because Mom has always been so active.

On the plus side, there is love and gratitude.  I’m so grateful to be able to spend this time with her and I’m intentionally taking the time to do things that we both enjoy.  When you are young, you take your parents for granted and often choose friends or your own young children over them. 

Having cared for my father, I have come realize how precious these good and healthy times are and how quickly they can vanish.  When you take the time to make memories, you can not only enjoy them in the present but you can hold onto them for a long time.  So making memories is what I will do.

Vacation For The Caregivers “JUST DO IT”

This is an article written by Greg Pledge, who cares for his mother in Ontario, Canada. 

I am writing this article with hopes that I will reach as many of caregivers out there that read Shelley’s web site. I sincerely hope that the word “Vacation” and the importance of taking one really hits home. Why, you may ask: because it is vital to our survival.  I am a 44 year old man and  have been caring for my Mom for about 8 years. Prior to caring for my Mom, I looked after my father for 2 years with the aid of my Mom until he passed away in Feb 2002.

 Becoming a caregiver is unlike any job you will ever do in your entire life! And it is not a job that comes with a manual.   Perhaps if you work in a health care facility there will be an operations manual but looking after someone at home, especially if it is a family member, or a very good friend is very difficult.  My reason for saying this is that it is very hard to separate yourself from the person you love  while caring for them because it is just not a black or white decision when it comes to providing for them. You have to apply “Tough Love“.

Another important fact is that it’s not a 9-5 job; therefore you can’t just clock out after your 8 hour day. It’s a 24/7 job and if you’re like myself, you give up working and earning a pay cheque to accommodate the needs and daily requirements of the loved one. We do this because we love our parents, sister, brother or very good friend.  It is “Unconditional Love“.  For myself, taking care of my Mom started without any warning. It began gradually prior to my Dad’s passing and than afterwards. It was day to day, week to week and month to year to year. I had to learn all the dos and don’ts of caring for someone you love.  It was on the job training. I had to do a lot of research along the way and thank goodness for the internet and the available resources to access information.

 Unfortunately at that time, Shelley‘s website and caregiver support via face book was not around to my knowledge. So I did what came natural to me.  I asked a lot of questions and attended all doctor and specialist appointments. I even utilized government assisted resources that my Mom could qualify for and got a care assistant that comes in 4 days a week for one hour a day to help with bathing and meal preparations and just general social communication for my Mom.

So many of us we are not perhaps fortunate enough to have a million dollars in our bank accounts, so we have to draw on what resources we have, personally and with the aid of what the government will grant us. Because of my Mom’s pension income which was higher than other pensioners, she did not qualify for government assistance full time aid here in Canada, Ontario. I had to use our own financial resources combined with her pensions. Thank goodness I was able to get some help through an agency here in Canada called the CCAC (Community Care Access Centers). I have a wonderful lady by the name of Mary who comes to our home to help me with some of the daily requirements of caring for my Mom. Together we form a team and I am very grateful for her help. Mary has educated me over these past 5 years and I am so grateful for the emotional support, not just for me but for my Mom, as well.

Now that I have given you a background history to my situation, I will discuss the importance of taking a holiday. Caregivers burn out – very fast!  The reason again for this is that our job is 24/7.  Time management is crucial and every hour of our day needs to be planned out. AND during that day we MUST find sometime to detach, relax and gather strength to continue to do the job. If you are like me, I am sure some of you have families, a husband or wife, and/or children and you have to divide your time as best you can to give of yourself to all the important parts of your life. For me, I have my partner of 5 years and he has been very supportive with my caring for my Mom. He works full time and when he gets home he tries to help me in what ever he can to give me a break. However it has to be said and definitely recognized that being a caregiver will put a tremendous strain on your relationships! And your social life! It is extremely imperative that you take time not only for yourself but for your family, friends etc.   Without them you will break!  And you will collapse.  You will find that without taking time off and going on a vacation, the care you are providing for the one you love will start to suffer, and you may even find yourself starting to resent them. I am being blunt and honest in this article because I am sure we all have felt this way at sometime. It’s so important that you DO NOT feel guiltyor ashamed because it’s natural and totally understandable. When you get to this poin,t it is a clear sign and “RED FLAG” indicating that it’s time for you to take a holiday! You are no good to your family, friends and most importantly to the one you’re caring for, if you are “BURNED OUT”  It took me over 8 years to finally agree with my partner and go on a mini-holiday.  

Fortunately for me, my partner works in the travel industry and he had won a trip to New York City, all expenses paid for hotel accommodations plus some meals and drinks. He won the trip in February of 2010 but the actual date of the trip was not until July 1, 2010. So I had lots of time think about it and prepare. YES! I felt very guilty for sometime and this is very common amongst us caregivers.  But you have to “GET OVER IT” and bring yourself to the conclusion that if you don’t take some time for yourself, you are likely to run the risk of getting sick and ending up in the hospital.  This would end up being even more stressful as you are the “GLUE” to keeping things together and if you’re like me, you run a well ordered and organized care facility in your home. Once you are removed, everything goes to hell in a hand basket, as they say so you MUST take care of yourself FIRST!

Taking a vacation, even if it is just a weekend trip away, will help you in so many ways. In my case, it gave me the ability of clearer insight to the situation I was living in and I was able to get in touch with myself again after so many years.

 When you are caregiver you tend to lose yourself into the situation and forget about who and what your are all about as a person but more importantly a human being and your contribution to your own personal life and being able to socially interact with society.  While I was away, I had forgotten just how much I enjoyed meeting new people and to laugh again and be carefree!  I had forgotten what it was like to relax and not feel like I was on a 24/7 call button “RED ALERT”.  I was finally able to “CRY.”  Yes, I had bottled up so many emotions inside over the years and just could not let them out!  And one night while sitting on the deck of our cabin with my partner after spending a fantastic day together and meeting new people, it hit me!  What hit me you ask?  All the emotions, anger, frustrations ect… because I just could not let my Mother see these emotions as I did not want to upset her. I cried for about an hour.  I felt horrible for my partner but he actually was glad to see me let it all out. I began to re-connect back to ME!  And then from within, the emergence of my being started to surface.

Over the years I had doubted if I was truly doing the right thing by caring for my Mom at home. And was I truly doing everything I possibly could to maintain her quality of life and dignity. I was able to answer yes to some of the questions but had to give more serious thought to the latter of my queries.

After 4 days, I had been able to re-charge and become more focused, giving myself permission to truly answer my questions and concerns without guilt. I had made sure that my Mom was well looked after while we where gone. Our good friend was staying in our home to be there 24/7 with my Mom. Our neighbours of over 30 years were very willing to be there to help anytime should my Mom call them.  Judy, my neighbour, had been a registered nurse for many years so I knew Mom was in very good hands. However, you do need to br prepared for what I call the “Caregivers Aftermath”.

Even through all your good planning and excellent care instructions for your temporary caregivers, things can happen. In my case my Mom suffered a major panic attack (she suffers from the health condition known as “GAD” General Anxiety Disorder).  She had been put on anti-depressants for a about 8 weeks prior to me leaving.  The doctor said that this would help my Mom with her GAD. I had researched a lot of medical websites and the general consensuses was treatment with anti-depressants.  In addition to the treatment plan, she was taking Clonazepam but Mom had been on this medication for over 40 years so it was not working like it had in years prior but because she had been on it so long she could not just come off it right away. We had been trying to slowly take her off of it under the doctors supervision.  Since this was my first time  ever going away, it impacted my Mom with very high anxiety. She got scared and became panic stricken, causing her to have sever palpitations which mimic the feeling of a heart attack.

When I got home I was immediately briefed by everyone, and concerns and questions where fired at me regarding my Moms state of mind and care. I had to call a general meeting with our friend and my neighbours to talk to them about the state of my Moms GAD and all that I have done over the past year to get her treatment and look into possible medications and assure them I had the situation under control.

After I had done the damage control and was able to assure all involved everything was okay, I then had to turn to my Mom and address her issues. While I was gone my Mom had two falls which was completely a surprise since my Mom had not had any falls for over 3 years, and I certainly would have not gone away had this been happening. I made an appointment with her doctor prior to me going away so should something  happen, I had the appointment there to be examined. We had an MRI scheduled a few months prior to the trip as my doctor wanted to see how my Moms back was healing and if there where any further progressions from previous injuries from the past. My Mom was in a lot of pain and it was very apparent that she was much weaker in her legs since I had gone on my holiday.  It took me from July 5 up to now to get things back to a somewhat orderly manner.  However, something did come of this trip and even though this article is about the importance of going on a holiday for yourself and how you need the break in order to protect your health, this article will become a two part article.  Look for the 2nd part of it in the near future.

Because while I was caring for Mom over the past 8 years, I had become so absorbed into her well-being and daily needs, it became a routine which just did not allow me to think clearly and logically about the health care quality for Mom. 

Now that I’ve  had the chance to get away and be removed from the situation by taking a short vacation and clearly my mind, I can see that I/we were doing more harm than good by keeping my Mom in our home and trying to care for her.  Sometimes you end up putting the person you love and care for at a higher risk of injury and/or in some way being an enabler and cutting short their possible longevity by socially isolating them. This was the case with my Mom.  She did not want to get involved with outside community workshops or senior groups. She would just rather sit in her chair and watch her TV and do nothing but complain about the things she could no longer do!

As her son and caregiver it finally came upon me to face that difficult cross road. “Is now that right time for a senior home”?

I hope this article has helped some other caregivers and given insight and provided you with some facts and the importance of doing what is right for you.  One: taking the holiday but also gaining clarity of thought so you can revaluate your care provider situation and look at it with a fresh mind and see it for what it may truly be either good or perhaps not so good.

God Bless and stay tuned for my follow up article on “When is it time for your loved one to go into a senior care facility/ home?”

Sincerely,

Greg

Greg Pledge is a writer and caregiver for his mother in Ontario, Canada.

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.