Spouse caregivers often live with uncertainty when making decisions about the care of their loved ones and decisions about their own needs as caregivers. Caregivers do not receive an instructional manual when loved ones are diagnosed with Alzheimer's, so doubt and guilt and can easily accompany major decisions.
Taking away the car keys is often the first major decision that may cause caregiver doubt and/or guilt. People with Alzheimer's often want to continue driving and feel they can do so safely even when their caregivers feel that it is no longer safe for them to do so. Caregivers must have the courage to take away the car keys when it is "necessary," whether their loved ones agree or not. Doubt can easily creep in, however, because there is no unanimous agreement about just when that does become necessary. Some doctors and caregivers feel that until the loved one with Alzheimer's begins to ignore traffic signals, bumps curbs on corners, or in some other way demonstrates unsafe driving, it is okay to continue to drive. Others feel that people with Alzheimer's should stop driving as soon as the diagnosis is made, well before the possibility of an accident increases.
Other early decisions that can lead to caregiver doubt and/or guilt arrive when caregivers feel that they need to place loved ones in social day care programs, or increase their time spent in such programs. The same is true for when it may be necessary to hire home companions, health care aides or consider placements in assisted living residential facilities.
I experienced doubt, but not guilt, when I made each of these decisions for Clare. In each instance I did what I thought was best for her ... and, admittedly, best for me ... so there was no guilt. Once Clare was officially diagnosed with Alzheimer's, I wanted her to stop driving immediately. Our doctor agreed. I told her that whereas she might still be able to drive safely for a while longer, at some point her impaired cognitive skills were going to worsen and make driving unsafe. I told her that I did not want her to have an accident and possibly injure herself or others. Our children also told Clare that they would not let our grandchildren be in her car if she was driving.
We argued over this matter for nearly two months after her diagnosis. At that point, I told my support group that I would hide her car keys if she didn't stop driving within another two weeks. That same day, driving home from our support groups and having yet another argument about her driving, Clare reluctantly handed me her car keys and agreed to stop driving. She said that she felt she could still drive safely, but if driving caused me so much stress and anxiety, and worried our children so much, then she'd stop. I felt enormous sadness for Clare because I knew this was robbing her of her independence ... but I felt no guilt.
When we reached the point when Clare was requiring all of my time and attention at home, I needed respite time. Clare felt no need to attend day care programs and refused to consider a home companion, but I told her that she had to make a choice because I needed time just for myself. Clare finally agreed to go to an adult day-care program once a week for 4 hours, solely as a favor to me. When I needed more respite time, Clare reluctantly agreed to go to day care more often. I did have some doubts about the quality of the programs, but I did not feel guilty about my decision to initially place her in day care and then increase those hours.
It eventually became increasingly difficult for me to take proper care of Clare at home. We began arguing over her basic hygiene, toileting, showering, taking medication, dressing, and eating. Many members of my support group said that they had waited too long to place their spouses, so I asked Clare to go with me to visit assisted living facilities. The understanding was that we would select "the where" after our visits and not make the decision for "the when" until sometime in the future. We visited six facilities with separate dementia units and agreed upon "the where," thinking that we were still many months away from "the when."
Just a few weeks later, however, Clare's pattern of declines and plateaus suddenly changed and she was now declining faster and further with no plateaus in sight. I gave the assisted living facility a refundable deposit to place her name on a room waiting list, and I started preparing Clare for how it was getting closer to "the when." Three months later, the room became available and I moved Clare in. There was no doubt in my mind that this decision was necessary and I felt absolutely no guilt. I could no longer care for Clare properly by myself, she refused to have home health aides living in our house, and this was the only option left.
On the official move-in day, I left Clare in the care of the dementia unit director at around 9:30 a.m., promising to return to visit that evening. I hugged Clare tightly, kissed her good-bye, and left. When I got back to my car, I just sat there for several minutes and cried. I then drove back to our house and cried some more. I experienced tremendous sadness, and I had some doubts about whether or not this facility would provide for Clare's needs as much as I had hoped. I had doubts about how she would adjust, and doubts about whether or not she would be happy there. But I felt no guilt about placing Clare. I simply felt that I had done what was best for Clare ... and what was necessary for me.
Well-meaning family and friends may sometimes strongly disagree with decisions made by primary caregivers, leading caregivers to experience not just doubt but also tremendous guilt. However, caregivers need to always be mindful that their well-meaning friends and family are not walking in their caregiver shoes. Caregivers must accept that they may sometimes have doubts about their decisions, but there should never be any feelings of guilt. That's just not fair.
In my spouse support group, caregivers would sometimes talk about how a friend or relative made them feel guilty about a recent decision they made for their spouse about programs or placement in facilities. Other caregivers around the table would invariably interrupt to say that their well-meaning relatives and friends simply had no idea of what our lives were like as 24/7 caregivers ... that they simply "don't get it" as we all do and there is no reason to feel guilty about a decision made in the best interest of a loved one.
Doubts may often accompany major caregiver decisions, but caring for a loved one is tough enough without caregivers also having to experience guilt.
This is the sixth in a series of ten weekly postings sharing emotions I find myself dealing with regularly. It is my hope that these articles will bring some comfort to other Alzheimer's caregivers experiencing similar feelings. My next posting will be, "Reflections of an Alzheimer's Spouse ... Frustration."
Readers of this blog are invited to learn more about my journey with Alzheimer's and read copies of more than 40 of my articles previously published in caregiver magazines, medical journals, and newspapers at www.allansvann.blogspot.com. If you would like me to respond to any comments or if you have any questions you would like to ask, please email me directly at acvann@optonline.net.