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 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 request of God. I know that God did not cause June’s Alzheimer’s. However, June and I needed and requested God’s help as June slowly sank deeper into the darkness of Alzheimer’s. June has now been gone for many months.

For me, my feelings of guilt arose from a number of incidents that took place during the course of my caring for June. They all revolve around my decision relating to the placement of June in a facility. Almost daily my mind second guessed and debated this decision. This is my history with 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 followed a series of events, hallucinations, "wanting to go home", running away, hiding, thinking I was a stranger in the house, etc. I would like to think that I had no choice....I keep trying to think of feasible alterntives that I could have taken.......My philosphy 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:  Making a decision to utilize a nursing home for care.

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. 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.

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 bcause 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.

In my mind, I debate and redebate 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 knowlege however, gives me little consolation. I also know from my past failures that June would have forgiven me. However, June was not 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. 

Note: June passed away from the complications of Alzheimer's on 23 October 2008. It was a long weary stuggle for June that has lasted almost 11 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".

 * Last updated on 8 March 2010.