All caregivers feel guilt, especially once the diagnosis has been given. Early on we don’t understand why the person with memory loss speaks or acts the way he/she does. I used to get angry at my husband thinking he was not listening to me or didn’t care. It was frustrating, but that was because I kept comparing his actions to the way he used to behave as a fully functioning and competent person…..but slowly over time he had changed.
It reminds me of the frustration that I felt with my son before I knew that he had Attention Deficit Disorder, and way before I understood what those words meant. I would admonish him, and yell at him because I didn’t understand his behavior. After seeing a video in which teachers took the place of ADD students and were admonished, criticized, and belittled by the in-charge authority figure when they took too long to answer a question, I got it! It was then that I realized how my behavior impacted my son. The video showed the teachers how their in-class behavior was hurtful and demoralizing to the ADD student. I was mortified by my own behavior towards my son and from that day on I was a different mother.
It’s no different with dementia. Until I read enough to be able to put myself in my husband’s place, I just couldn’t change my behavior. I learned how unsettling and frightening not to be able to rely on the brain for creating a sense of self that one has from all the life events that we have logged during our lifetime. Our history defines how we think and feel. When our history is erased little by little, we don’t have a comfort base and memories to rely on that give us a sense of confidence in life. Imagine going through the day with no recent memories of what we did or ate or felt. Unsettling is a mild word for what emotions they must feel.
It may take months or years for us to reach the stage where we understand the disease enough to treat our loved-one with compassionate care. Those caregivers who don’t want to learn about dementia may never understand fully, and thus have a much harder time caring for and supporting their loved-ones. When the person with dementia feels loved and understood, they are less anxious and volatile. And along the way, we have to forgive ourselves for our transgressions as we learn!
The big saving grace here is that we are dealing with someone with memory loss, so if you get angry or frustrated and show it, unless it was a major incident, it will be forgotten in the next hour or the next day! So we can have a “Do Over”. The only time incidents are remembered is if there is enough emotion, negative or positive (fear, surprise, happiness, etc.) attached to the memory. Those memories seem to be saved, perhaps in a different part of the brain, and can be recalled easier.
Let me tell The Turkey Story as an example. One year very early in Jim’s disease I was given a Thanksgiving turkey voucher by my work for a local market. When I went to pick up my turkey, they were all out of 12 lb. turkeys ( the voucher was for a free 12 lb. turkey). They said that instead I could choose a 24 lb. turkey with no additional charge. What a deal! So I took home my 24 lb. turkey and put it in the freezer because Thanksgiving was over two weeks away. It did take up a good bit of my freezer space.
Jim loved ice cream, and had it almost every night, cookie dough flavor. So when Jim went to get out his ice cream each night, he would remark, “When are we going to get rid of this turkey?” This continued for about 7 days. Finally on the 7th day, I had had enough. I screamed at him, “If you don’t quit asking me about this goddamn turkey, I’m going to take it and shove it down your throat!” Now I was not one to talk like that let alone scream it. Jim was so surprised by my answer that he had this shocked look on his face that was priceless! I took one look at him and burst out laughing, and Jim soon smiled and followed suite laughing. It was so infectious that we went from laughing to crying we were laughing so hard. Forever after that he remembered and loved to tell The Turkey Story to others. The emotional response was so big that it stuck in his brain forever.
What I want you to remember, is that we all learn a little at a time. And as caregivers we don’t always respond the way we would like. You need to have forgiveness for yourself and let go of the guilt you feel about each infraction. Follow this rule: As long as you learn from your mistakes, forgive yourself, and begin again! No one is counting.
Strategies For Dealing With Caregiver Frustration:
- Answer each question as if it were the first time it was asked. If it helps, play a game with yourself by trying to use different words each time!
- Try not to show negative emotions when answering the same questions multiple times; watch the tone of your voice and any negative physical cues you may be eliciting. They read your body language as well as your speech.
- If necessary walk out of the room, take a deep breath, and walk back in a few seconds or minutes later. This especially helps if they are resistive or angry. Re-enter with a different air and try again.
- Never argue with someone who has dementia. It leads nowhere.
- Don’t correct a thought when it is wrong. Let it go.
- Take the blame, or say it’s your fault, and apologize.
- Distraction can be very useful.
- Go to their reality rather than trying to bring them into yours. It causes them less anxiety.
- Use music to help relax the person. It has to be music that they enjoyed.
- Be inventive, and use what works.
- Take one day at a time. Try not to worry about what you cannot know
- Forgive yourself for mistakes, and move on. You are treading in uncharted waters! No one dementia person is like another.