In my previous blog I wrote about decluttering our living space. Today I’m going to speak about decluttering our relationship. For those who are serving as Caregivers, the relationship is the most important thing to declutter. For many, it is also one of the most difficult things to do. Being a caregiver is an extremely difficult calling, one that is made much worse if there is a lot of negative emotions from things that have happened in the past, are happening now, or grief about dreams that will never come true.
On the FTDSpouse Support group, I consistently read of Caregivers who are put down, pushed around, and insulted on a regular basis. I’m not sure what I would do if Harriet were that way. She has ppaFTD and is never rude, mean, indifferent, or arrogant. Instead, at this point, she is more compassionate, kind and patient than ever. This means that some of what I’m going to say today does not come from my experience. If what I say below doesn’t help, let it go, either it’s not for you, or it won’t really help anyone. If you wish, leave a comment and let me know what you think.
Have you ever had the stomach flu or food poisoning and you didn’t make it to the bathroom but threw up all over the furniture, or in a car, on the wall, or floor? You probably felt bad about it, but you were also too sick to clean up your own mess. Someone who loved you came behind and cleaned up the mess you made. Hopefully, they didn’t yell and scream about what a self-centered, uncaring jerk you were. Rather, they understood that if you weren’t sick you wouldn’t have made such a mess. In other words, it wasn’t you that made the mess, it was the sickness. In the same way when your loved one with FTD is rude, ungrateful, and indifferent it isn’t them but the sickness making them behave this way. I realize that stomach flu will usually only last for about a day, whereas the misbehaving caused by FTD is for the rest of their lives. In one sense, your loved one is no longer with you, the disease has destroyed the things that made them special to you. What a horrible disease.
Realizing that the disease, not the loved one, is causing such negative behavior can help us continue to care for them. Really, this is one of the foundational things that will give us some consolation. Therefore, the first thing to do, to declutter your relationship, is to realize that a disease has taken over your loved one’s brain, which means that, they will never be the person you know and love again. Allow yourself to grieve over this horrible reality and hate what the disease is doing to them. Again, hate the disease, not the sick person. Only by completely accepting the new reality, we find ourselves in, can we begin the process of decluttering our relationship.
Accepting it does not mean I have to like it, give it any power over my life, or stop hoping for a miracle cure. It means I’m going to face this and come to a better understanding of what is going on and what the future holds for me. This is why it is vitally important to get information about FTD. Find out what behavior is a part of this disease. Go to the Association of Frontotemporal Degeneration and you will find information to help you through this. Go on Facebook and join the FTD Spouses group. It is a great help to hear about others struggles and get support for your own. If you can find a local Support Group attend the meetings. Only by learning what to expect, and listening to what others have gone through, can you be empowered to keep on keeping on.
When you realize that your loved one’s behavior is not really directed at you, you can let things slide and not take them to heart. I realize that even knowing the rude, indifferent, or hurtful behavior is caused by the sickness won’t make it so that their words will not hurt me. But, when they vomit the nasty words into my life, it will help me get over it and forgive. None of us will be perfect at this. We will all have days of great anger and rage, deep grief and sadness, frustration and fear, but also days of peace and joy.
All Caregivers have days of grief which express itself in anger, weeping and crying, depression, and denial. If you’ve ever grieved the loss of a loved one, then you already know that grief ambushes you. For example, a few months after my mom died, I was doing some grocery shopping. I was feeling really good until I turned a corner and the first thing on the aisle was a display of Little Debbie Cakes. My mom loved Little Debbie and I doubt that a day went by in which she didn’t eat at least one. When I turned the corner, I was feeling happy, when I saw the cakes the grief welled up inside me and the tears started to flow. A time will come when you see an older couple enjoying life together and the thought will come, “Why can’t we have a relationship like that?” Or you will see an article about sex for seniors, which promises the best sex of your life. Sadly, if you are like the vast majority of couples with FTD, one of the first things to die was the romance. This too is something we grieve over, the loss of something beautiful and important. At times like these, grief for the loss of your future together will well up inside you. What can you do with this grief? You can cry, feel sorry for yourself, pray about it, talk to your support group or Facebook group, but don’t swallow it.
All of this is one reason why you should not try to do this job alone. Those who attempt to do everything themselves have high rates of depression, disease, and death. Many people will die before their partner with FTD because they wouldn’t get the help they needed. Please do not destroy your mental, physical, or spiritual health in the attempt to do it all by yourself.
The first step in decluttering your relationship is fully accepting and grieving this new reality you’re living in. That way when your loved one vomits all over your relationship with unloving, uncaring, rude, or indifferent behavior you won’t take it personally. Rather, you will understand it’s the disease not the loved one doing these things. If you can really grasp this, it will go a long way in making your life much more peaceful.
In Part three I will be writing about letting go of past hurts and unresolved issues. In part four I will speak about how to remain in the relationship and live day by day.