In my previous blog I spoke about the importance of fully understanding and accepting this disease that has taken over our loved one’s life. An important part of this understanding will be taking care of ourselves by getting support and a sympathetic ear. Today I will speak of decluttering your relationship by letting go of past hurts and unresolved issues.
The last time I was watching a marathon I saw Eliud Kipchoge of Kenya, cross the finish line in two hours, one minute and 39 seconds, setting a new world record. Right behind him was Sheldon Faux the fastest man to ever run a marathon in a three-piece suit. I was really impressed until I saw Betty Fauxpas running in her formal gown with matching high-heels. Of course, no one runs a marathon in a three-piece suit or formal gown with matching high heels. Everyone knows that if you’re going to run a race you want light shoes, shorts and shirt; you don’t want to have anything on that will slow you down. In the letter to the Hebrews the Christian life is compared to a marathon, “let us also lay aside every weight, and sin which clings so closely, and let us run with perseverance the race that is set before us.” In much the same way being a caregiver is a lot like running a marathon in that in order to successfully complete the task we must move forward with wisdom and discipline. We do not want to wind up like the very first marathon runner, Pheidippides who, in 490 BC, ran the 26 miles to Athens, delivered the message, “Rejoice, we conquer,” and fell over dead. Sadly, a high percentage of Caregivers will die either before their loved one or shortly after.
There is speculation why so many Caregivers die before or shortly after their loved ones. The things I’ve been reading seem to point to stress and the damage it causes to our bodies. Two of the top things that cause stress, in relationships, are unfulfilled expectations and unresolved conflicts. These two things need to be set aside if you hope be there for your Loved one for the duration of their illness, or if you hope to find a new life after your loved one dies.
Everyone has an idea of what relationships should look like, and everyone has some relationships that fall far short of this idea. Almost everyone has an idea of how a mom, dad, grandparents, husband or wife should act. You’ve probably heard someone say something like, “My husband was such a jerk, he never was any good at relationships.” The fact that people speak this way demonstrates that we have common ideas about what a good relationship looks like.
Think about your expectations on the day of your marriage. Many of us had a picture in our minds, of a relationship filled with love and respect that would bring, joy, laughter, support, kindness, consideration, and romance. Some of these ideas came from books, movies, and songs, which, at the time, we think are being fulfilled in the person we will marry. However, anyone who has been married more than a week knows that what happened before the marriage doesn’t totally continue into the marriage. You’ve probably already heard of the scientific study which found something that totally destroys the sex drive in young adults; it’s wedding cake.
Harriet and I will celebrate our fiftieth Wedding Anniversary this year and like most couples we’ve had times of great romance and times where we didn’t seem to like each other, times of fireworks and times of real frustration. But no matter how bad things got I never thought that we would have a sexless/loveless marriage. Those who study marriages speak of a “sexless Marriage, as one where, even though the couple treat each other with kindness and respect, they are more like friends than lovers. This seems to be problem for a lot of couples. Data scientist Seth Stephens-Davidowitz says that “sexless marriage” is one of the most googled topics on the internet. A loveless marriage is one where there is a real lack of respect displayed often through insults, put-downs, indifference, and unforgiveness. In a loveless marriage there is no such thing as a benefit of the doubt the partners always think the worst of each other.
One of the problems with FTD is that a good marriage quickly becomes a sexless marriage and, often becomes a loveless marriage. For the past seven years Harriet and I have had a sexless marriage. Sex was reserved for obligatory times, birthdays, Valentine’s Day, and our wedding anniversary, which meant that the average was about twice a year. There was an occasional spontaneous encounter if the Ambien or too much alcohol, stirred something up. This would be at 2or 3 in the morning, I was exhausted, and things generally didn’t go very well. Most of this was before I knew anything about FTD. I had no idea that Harriet was developing this terrible disease, nor did I know that one of the first things to be destroyed was a couple’s sex life.
When I would attempt to initiate something, she would respond with hostility or indifference. She would either have the deer in the headlights look, with no idea what was going on, or she would immediately be irritated. If I wanted to discuss the issue, she would begin to berate me for being such a workaholic. In her mind I always chose work over our relationship and had been that way for our entire marriage. For over 30 years I had been involved in ministry as a Lutheran Pastor. As such you are on call 24/7, and because people work, most meetings will be in the evening. To be honest, I was a workaholic, putting in 60-70 hours a week, often scheduling things on my day off. However, I was almost always home for lunch and dinner, and home for the evening by 10 pm. I thought all of our relationship problems were being caused by her anger about my work schedule.
Four or five years ago we had a series of discussions, initiated by me and ignored by her, in which I told her about my feelings. I said, “I don’t know what I’ve done but you keep giving me the message that you find me completely unattractive. You seem repulsed by any thought of intimacy with me and I wonder why. Unless you are stoned on Ambien or drunk on wine you avoid any kind of affection, Really, you kiss me with all the passion of a mother kissing her child good night or her brother goodbye.” Harriet responded by glaring at me and saying absolutely nothing. Sadly, she began to use my unhappiness and pain against me. Once we had some friends over for dinner and cards. We all had plenty to drink that evening and after they left, she said, “You know I was thinking about making love with you tonight but after our discussion the other night, I’ve decided that you’ll just complain because I’ve had something to drink. You should know that I will never make love with you when I’ve been drinking.” Since there is not a single day that Harriet doesn’t drink something, she was telling me that our love life was totally over. At that time indifference and/or hostility were the two most common emotions coming from Harriet. Sadly, this is also true for most people who have been diagnosed with FTD.
You may wonder why I am going into so much detail in such personal matters. It is because I came to totally incorrect conclusions about what was going on. I thought she didn’t love me anymore. In fact, there was a period of time when I was expecting the old movie line, “I don’t know it I’ve ever loved you.” When you’ve been married for over forty years you pretty much know when you are getting the signals, “I’m in the mood for love…”. Yet, she no longer picked up on any signals that I sent. I now know that this was because her brain in very damaged and in fact is dying. If you don’t know, that you know, that your Loved One has brain damage, you will misread everything that he or she does. You’re going to feel angry, rejected, unloved, unwanted, unappreciated and any other negative, relationship destroying word you can insert. Harriet wasn’t acting this way because she was a frigid Ice queen or because of a lack of love. She was acting this way because her brain is dying and so is the brain of your loved one with dementia.
I have prayed for our marriage every day for the past 45 years. St. Paul writes, “Husbands, love your wives as Christ loves the church.” Therefore, every morning I pray, “Lord, help me to love Harriet in the same way that you love the church.” At that time the Lord was leading me to work on the marriage. In fact, the worse things became, the more I was sure the Lord was leading me to work on the marriage. Finally, in frustration I cried, “Lord, it takes two people to work on the marriage!! She won’t join me in this, all I ever get is hostility or indifference.” I had the impression that the answer was, “Take care of Harriet.” I felt like the word from the Lord was a call for me to surrender my expectations, offences, desires, and longings to him. This is not an easy thing to do, but, I see now that it is necessary if I hope to stay mentally, physically, and spiritually healthy.
I do not know how to live such a life without prayer, forgiveness, and surrender. St. Paul advises us, “Don’t be anxious about anything, but in everything, with prayer and petition, with thanksgiving, let your requests be made known to God. And the peace of God, which passes all understanding, will keep your hearts and minds in Christ Jesus.” I really need the peace that St. Paul speaks of. Indeed, in that past few years, I’ve had tons of anger, unforgiveness, rage, bitterness, sadness, cursing, and swearing. Because of this, I keep going back to the Lord in prayer, to ask for what I need to be faithful. This time of prayer includes confession of my shortcomings, forgiveness towards Harriet, thanking God for the blessings that I have, and asking to become the kind of husband that Harriet needs.
A little over two years ago Harriet was diagnosed with Alzheimer’s and in September 2018 with FTD. It does help to know that her behavior is the disease and not Harriet treating me badly. Even though it helps it doesn’t take all the sadness and pain away, which is why, In order to cope I have to go to prayer again and again. My calling, right now, is to be a caregiver. Which means I must accept what is, and let my desires for what was, or should be, die. I really need to do this to get rid of all the negative feelings, and the stress they bring, and live a peaceful life.
In the past five months there has been a change in Harriet. She has gone from indifferent and hostile to caring, compassionate, grateful, and kind. However, if I try to be romantic, she doesn’t seem to understand what is happening. She pulls away afraid that I’m going to hurt her, which is also a part of FTD. Therefore, even though we still have a sexless marriage, I am happy to say, it is no longer a loveless marriage. I do not know if this is a temporary thing or a permanent development, I’ve learned not to look ahead but take one day at a time.
I have been called to care for my wife at the worst time in her life and this is truly a long-term commitment. I would like to finish well which means I need to get rid of the negativity and stress that could make this a living hell. In order to successfully run the Caregiver Marathon, we need to take off the three-piece suit, or the formal gown with matching high heels, or any other weight that hinders us.
In the final posting, on Decluttering, I will share what else has helped me with the FTD and how things are going now that I have totally committed to a life without romance.