A Caregiver's Guilt and Reminders
- Published on Tuesday, 27 May 2008 06:00
- Written by Stanton O. Berg
Why am I making this public statement or confession concerning a caregiver’s guilt? There are several reasons. It is an essay on a care giver’s guilt feelings in general but more importantly it is my own personal guilt feelings. The reasons are:
(a.) It is a notice to other caregivers that feelings of guilt over the management of a loved one’s tragic sickness or disease comes with the territory. It is a normal sort of a reaction and feeling.
I attended regular “Family Caregiver’s" Support meetings at the Benedictine where June spent her last days as a resident. There was hardly a meeting that did not have a caregiver who talked of feelings of guilt. The guilt may arise as a result of many things evolving from their relationships with their loved one. Very frequently it involved decisions relating to the placement of the loved one in a nursing facility for their day to day care. It may involve the time they spend in or with the care of a loved one.
(b.) This essay is my means of expiation and softening of my own feelings of guilt.
(c.) It is an apology and an explanation to June that I am not sure what I should have done differently as a care giver but I wish that could have done better.
(d.) It is an attempt to bring about more of a public awareness to the terrible nature of Alzheimer’s.
(e.) It is or was also a prayer and request of God. I know that God did not cause June’s Alzheimer’s. However, June and I both needed and requested God’s help as June slowly sank deeper into the darkness of Alzheimer’s. June has now been gone since 23 October 2008. I always wondered about the meaning and effect of James 5: 16 (KJV) that reads...the effectual fervent prayer of a righteous man availeth much." Did that mean the failure of our many prayers for June's healing was my fault...but then June should not suffer from my many shortcomings...June was as "Righteous" as any person could be.
Also included were prayers I made for June at the Benny Hinn Ministries Crusade, prayers made in June's behalf by our Redeemer Lutheran Church pastor, prayers by friends in the Catholic Church, Prayers by the Billy Graham Association and Pat Robertson of CBN...
I try to find the answer and at times wonder if God is saying..."Go Find a Cure and I will Help You!"
(f.) An acknowledgement of my failure in providing recognition of June's many contributions to her church and our society while I was busy taking my own bows for recognition that I had received for my forensic science work. June was a very humble person who has always made light of or ignored her own contributions to society. Her contributions were many and on a continuous basis. June was doing God's work with her many Redeemer church related activities. I was too much into myself to see what June was doing. Her achievements were really far more important than mine, and I wish now that I had recognized and honored June for her accomplishements and achievents at the time.
God clearly regards Humility as a great virtue…Humility as a virtue is the theme of both the Old and the New Testaments of the Bible. June had the virtue of Humility while I did not.
For me, my care giving feelings of guilt arose from a number of incidents that took place during the course of my caring for June. They all revolve around and evolve from my decision relating to the placement of June in a facility. Almost daily my mind second guesses and debates this decision.
A history of June's care and of my feelings of guilt
June and I would go to the Mayo Clinic once a year during her early stages of Alzheimer's. (2001-2003) This once a year trip resulted in interviews by the Alzheimer's research center staff as well as an MRI of June's brain. The appointment would take up an entire day. We would usually go down to Rochester the evening before the appointment. For the first two years these trips appeared to be no problem for June. The third year however was very upsetting to her. When we returned home that year, June suddenly blurted out to me:
"I thought that we would always be together".
I then told and promised June that "we will always be together". She then said: "I was so afraid." I do not know what the Mayo staff told June on that third trip but I decided we would never return. They were doing nothing for her in any event. It was really just essentially a death watch and a source for research data for them.
History shows that I failed in my promise. On March 16th, 2005, June was placed in the Wellstead of Rogers. Ironically the day of that month (16th) was our anniversary day while of course not the anniversary month. This decision was based on and followed a series of events, hallucinations, "wanting to go home", running away, hiding, thinking I was a stranger in the house... June at this point was in the late middle to early late stages of her Alzheimer's. I would like to think that I had no choice....I keep trying to think of feasible alternatives that I could have taken.......My philosophy had always been - "Make the best decision and don't look back." This time I cannot seem to follow my own philosophy.
See my essay on the nursing home decision making process:
We were cautioned by the Wellstead Staff that for first week that June was at the Wellstead, June was to have no calls or visits from the family until she became adjusted to the Wellstead. (The suggested time was a week.) Our granddaughter Gretchen did not know of this rule and called June at the Wellstead. It was a sad conversation. June told Gretchen.
"Grandpa is not here."
This caused me great guilt feelings. Here June was in this strange world and I was not with her to take care of her. June expected me to be with her. The first time I visited June after a week, she seemed so happy to see me. Her first words to me were:
"How did you ever find me?"
Here June thought I was looking all over for her until I found her while in reality I was a part of the conspiracy. She had this child like faith in me and I had let her down.
During the first year that June was in a facility for Alzheimer's care, she was able to respond and talk to me. I had a routine of visiting June for the day on at least four (4) days a week. I had set up a schedule so that there would be a family member visiting June every day of the week. Three of our children lived locally and they were each assigned one of the three (3) remaining days of the week.On my four days, I would come at 9 AM in the morning and leave in late afternoon or early evening. I started with a 5 hour day visitation and gradually increased it to an 8 hour + day. I would come in on other additional days or times as needed.
Many times June would cry when I left for the day. I would try to have June lay down for a nap before I left for the day in order to ease the departure. June however seemed to sense that I was leaving. My promises of a quick return were never helpful. One of the reoccurring snapshots in my memory bank is that of seeing and hearing June sobbing on the bed as I left.
This in turn, would cause me to become very emotional and upset during my drive back to the house. Usually I would also be weeping when I left the Wellstead. I remember clearly the day that as I was leaving the front entrance of the Wellstead at the end of the day with tears streaming down my cheeks, another husband Wally also leaving and driving by the front entrance saw me and quickly pulled over. Wally insisted I get into his car and he drove me around until he felt I was capable of driving myself. I will always remember Wally's act of kindness. While we were not otherwise good friends, there was a feeling of brotherhood among the husbands who were there caring for their wives.
Of course as June traveled further into and through the final stages of this terrible disease she became almost totally non responsive. My departures at the end of the day were still for the most part, very emotional events for me.
I have one episode that took place in the first half of 2006 that is forever burned into my memory. June was at the Benedictine Alzheimer's Villa at the time. I was leaving at the end of the day to return to the house for the evening. As I was leaving June started crying. I have this vivid picture in my memory, of June in her wheel chair, crying with her out stretched arm and hand towards me! I recall trying to assure her that I would be back and that I always came back! Of course she could not remember the past days nor probably even understand me. It was only a few months later that June would no longer be responsive to voice, conversation or touch and would remain this way until she passed away 2 years later.
June always loved our home. Almost every time we would back our car out of the driveway, she would look back at the house and say:
“We have such a nice home.”
Every time that I now back the car out of the driveway, I am haunted by her words. I am living in the house June always loved while she was is in an institution and now because of Alzheimer's, June is no longer here.
To me it is like June was in a velvet prison against her will. June was deprived of her possessions and most of the things that she has loved and cherished for all of her life. She could not come or go as she wanted. All of this seems so unfair. June has never broken any laws nor done anything wrong. She has lived an exemplary life with a faith and trust in God.
(June and Stan - Holy Spirit Chapel -The Benedictine - October 2007 - Photo - Jim Gehrz)
In my mind, I debate and re-debate the decision to place June in an institution. I would like to believe that what was done was the only proper alternative and the right thing to do. If I was wrong, I know that God forgives me. This knowledge however, gives me little consolation. I also know from my past failures that June would have forgiven me. However, June was no longer mentally capable of forgiveness. Alzheimer's took away her ability to think, plan and rationalize. Even if June could have forgiven me, I find it hard to forgive myself. It does not help that I have been told by others that I have done a good job for June. The horror of Alzheimer's aggravates my broken promise, and I cannot erase the past. My conscience gives me no relief. Even now that June is no longer here and has been gone for many months, these feelings are reflected each day as moments of sadness passing through my mind.
I have dedicated my remaining life's objectives to preserving June's memory and the history of her very unique and special life. I have also dedicated my remaining life to doing advocacy work in behalf of Alzheimer's research and funding as well as improving the care practices of Alzheimer's victims in nursing homes.
It has been said that one can make God laugh by simply telling him of one's long term plans. My remaining life objectives are by the necessity of my age, short term. I would hope that God is not amused and would find these objectives worthy of his support. Perhaps this is how God is making my life more meaningful for whatever time remains of it.
"Caregiving is an inadequate term...it's really LOVE‐giving. You essentially need to be willing to give unconditional love to the person that's suffering from Alzheimer's." - Mark Shriver
For a companion essay, click on the below link: "God Records the Tears of the Caregivers":
Barbara T. Vaughan - Newburgh, Indiana - (7 August 2011): “I have read your articles and want to tell you that your words talk for thousands. I was so touched, and could feel the love and respect you had and still have for June. I have Alzheimer’s, my daughter is my caregiver…with the help of your words…
I am having her read your posts, she like you has promised that she will always take care of me at home, but I have tried to tell her that she can not promise me that, and it is alright. You are a loving man, thank you for the honoring of your wife and having the courage to write about it. I know it will help my daughter...GOD bless June!”…this page has started the discussions between my daughter and I....things that I want her to know now, sharing this page with her, reading all your articles now and with us both talking about how you feel, and me being able to tell her it is ok....please share"… get the word out there! We must find a cure for this disease! I am a fighter, do it Stan…lets do it for June!!!!”
Melissa's comments: “I am Barbara’s daughter, thank you…from the bottom of my heart, my mother and I are very very close, but her disease has caused a barrier of what to say and what not to discuss. You have opened that up. I will be forever grateful to you and your June!”…”I just have some feeling that your wife answered our prayers...she is the angel my mom and I needed, and you made it possible...today started a new chapter for my mom and me because of… June.”
Editorial Notes: After receiving the above kind comments by Reader Barbara T. Vaughan and her daughter Melissa, I requested their permission to publish their comments for the benefit of others. They both graciously consented...Barbara has since passed away from Alzheimer's on 9 June 2013. (1 year and 10 months after making the above comments.) Barbara was first diagnosed with Alzheimer's in 2007 based on symptoms noted in 2006. Melissa was able to provide her mother's final care in their home. Melissa is a remarkable lady...Melissa is also a victim of MS. One of my favorite cousins Lois, came down with MS at an early age and suffered with it all her life. While this chronic disease permits a relatively normal life span, it is a life filled with periods and episodes of pain and discomfort. In spite of having this physical handicap, Melissa was able to care for her mother throughout her journey through the shadows of Alzheimer's...Like my cousin Lois, Melissa also has displayed a cheerful and optimistic outlook on life and her role as her Mom's Holy Watcher!
Chris Souder - Portland, Oregon - (21 September 2013): "Stan, the timing for your repost of "A Caregiver's Guilt And Reminders" essay couldn't have come at a better time. Since becoming facebook friends, I have touched on just about everything within June's website, but I needed to see this again as I have been so overcome with guilt and second guessing every decision I have made for my mother. She is currently on hospice for failure to thrive - going from 5'11" & 194 lbs. to 114 lbs. in less than a year. This downward spiral began about the time we moved her into Memory Care. You're so right when you say that "it does not help to be told by others what a good job you are doing" when nothing that you say, do or think improves the situation. I am not a religious person, but your wisdom and faith have helped guide me through the unpleasant reality of living with Alzheimer's. Thank you to you and your lovely June!"
Melissa Wooding Brasil - Walpole, Massachusetts- (21 September 2013): "Stan, amazing read, thank you. It has helped me understand a lot more. You are helping a lot of people. June is smiling down on you."
June passed away from complications of Alzheimer's after a long dark journey of almost 12 years. June's funeral notice as printed in the Minneapolis Star Tribune following her death in October 2008 can be found on the top blue navigation strip under the label "In Memoriam" and on the drop down menu as item - "June K. (Rolstad) Berg - In Memoriam" (or click on this link):