Have you ever read a book and thought, “Why didn’t I think of that?” I just finished reading the book, Loving Someone With Dementia, How to Find Hope While Coping With Stress and Grief, by Pauline Boss, PhD. Chapter Eight is entitled, Delicious Ambiguity, and deals with the ambiguity of living with, and loving someone with Dementia.
You might recall that I was a Lutheran Pastor for over 30 years. One thing Lutheran clergy love to discuss, is the ambiguity built into our faith. For example, Martin Luther taught that we are simultaneously Sinners and Saints, in other words it’s not either/or, but both/and. We are both sinners and saints at the same time, because the New Testament calls all believers saints, regardless of their sinful condition. Then, there is the, Already but, Not Yet, ambiguity of the Kingdom of God. We already see Christ as our King and we live by the values of His Kingdom while, at the same time, admitting that His Kingdom is not yet here in its fullness. When I read Delicious Ambiguity, I thought, “Why didn’t I think of that?”
The truth is that if you’re living with someone with dementia, your life is filled with ambiguity. For example, your loved one is: Dead but still here, Gone but still around, Different but the same, an expert in a field that they know nothing about, your intimate partner who doesn’t know you, Your lover who can’t remember how to make love, the one who used to build you up but now tears you down, ambiguity lies at the center of our relationship. Dr. Boss writes, “Seeing the good side of ambiguity gives back to you some of the control that dementia has taken away. Embracing ambiguity’s constructive side gives you a resiliency and strength to endure your caregiving journey.” Dr. Boss, while admitting the downside of ambiguity, tells us that embracing ambiguity will:
“Allow for some hope despite our having no guarantee of a desired outcome.
Allows for change and new opportunities for adventure.
Makes us grow and emotionally and spiritually.
Teaches us nothing is final.”
These are the highlights of her, ten reasons to embrace ambiguity, that I find quite compelling.
I find these compelling because they allow my mind to get rid of, ‘If-then,” thinking. At this time, in our relationship, “If-then” thinking only leads to anger, frustration, sadness, grief, etc. When I think, “If Harriet really loved me, then she would want to make love with me” I’ve set myself up for pain. The truth is, Harriet loves me as much as she can with FTD, which does not include love making. In other words, she is still alive, but the sexual part is dead. If-then thinking leads to false conclusions that make me feel unloved, rejected, and unhappy. This was a huge problem before I knew what it meant, for our relationship, that she had FTD. One Valentine’s Day, we had gone out to dinner, exchanged gifts and cards; She was acting quite romantic. That year St. Valentine’s Day fell on a Saturday. This meant, as a pastor, I was going to have to get up early the next morning for church. We got home and, for some reason, the Television was on and the movie, The Princess Diaries was playing. I was surprised when she sat down to watch it. I said, “Aren’t you coming up to bed?” “You go ahead,” she answered, “I’ll be up after this movie.” I was angry, hurt and felt rejected because, she had seen that movie about a week before, and she was choosing it over making love with me. If she really loved me, Then she would turn off the Television and come up to bed. That’s a reasonable conclusion, unless your Loved One has Frontotemporal Degeneration.
About the same time, if I would try to share something very important to me, she would act totally disinterested. I wondered if there were someone else, and waited for the line, “I don’t know if I ever loved you.” I was thinking, “If Harriet really cared for me, then she wouldn’t be so indifferent to my concerns,” While that is a valid conclusion for someone in normal mental health, it is not true for a person with FTD. The truth is, it is impossible for someone with FTD to care about much of anything. Most of them don’t realize that they are even sick. Can you see how, if-then thinking makes a terrible situation even worse.
Harriet’s brain is damaged and dying. Yet I often expect her to respond to things as if she had a healthy brain. At times like that I get angry and resent the way she is treating me. Teepa Snow says, “Your loved One has Dementia, and you behave like you have brain damage,” Since Harriet’s brain is damaged and dying, she may be doing the very best that she can even when she is driving me crazy. Ambiguity reminds me that Harriet is a very intelligent person who doesn’t have a clue.
Nothing you do will make being a caregiver an easy task, but some things will help make it bearable. We may have a long journey in front of us, or it might end quicker than we believe, but by learning certain skills we will be around to attend our loved one’s funeral. This will be a huge blessing to our children. Losing one parent is difficult enough, losing both seems quite unbearable.
Since I plan to live longer than Harriet, it is quite reasonable to make plans about the life I want to live when she is gone. You might think, “That’s Terrible! If you love her then you wouldn’t want her to die and make plans like that.” Well, I do love her, and I cannot do anything about the time the Lord has given her. Besides, if I didn’t love her, I would be long gone. I make plans to give me hope for the future. Hope for the future gives me strength for today and I need all the strength I can get. I make plans because she can do fewer and fewer things. I make plans because, Dementia wants me dead, and by faith I believe I will be alive after this is all over.
I’ve read of some of the plans Caregivers have made. They include things like: Travel, Education, Adventure, and New loving relationships. You might be curious about what tentative plans are in my mind. About a year ago we bought a 28-foot, Jay Co, RV. We used it on our trip out west to California. My plan, right now, is to take off and travel for a year or two. I might sell the house we’re living in right now, not sure about that. There are also places I would like to travel to in Europe. I’ve never been to Europe and would like to take a long, leisurely jaunt through the different countries and cities of Europe. I think trips like that are better when shared with another person. I have some ideas about that as well. (I’m not going to mention any names, so that my Children, and Grandchildren, will try to stay on my good side. LOL Just joking)
I don’t find anything wrong with making plans for the future. I have a duty to care for Harriet as long as she lives. I will do my best to be a support, a blessing, and a comfort to her. I will not abandon her to Dementia but will walk with her every step of the journey. May God help me to do so.
Please continue to pray for me and be assured that I pray for you daily.