My Second Long Goodbye: Chapter 5
From the beginning of my wife’s placement I have been trying to examine my own life with its vastly different circumstances and to this day it is still very much a work in progress (I realize that everyone’s life is continuously a work in progress but not everyone confronts the challenges that dementia brings.) I have already alluded to the loneliness I have been feeling but I have not discussed the paralysis that overcame me as I sat alone in my house day after day.
Part of my paralysis came from my overwhelming sense of guilt at what I had done to my wife and the constant need to know what she was thinking and how she was dealing with her new situation. It gnawed on me that she might be suffering somehow from what I had done to her and the fact that there was no way for her to tell me how she was feeling added to my pain and sense of guilt. Until I could free myself from these feelings there was no way I could begin to focus on building whatever my new life was to be.
Even though I knew in my head that what I had done by placing her was the right thing to do my heart had yet to embrace what my head knew. And then one night I had a flash. As I was sitting allowing myself to just be before turning in for the night I had an insight that came to me concerning the feelings I had been struggling with having placed my wife. As I allowed myself to simply let my feelings and thoughts happen I was struck by the thought that actually by placing my wife where she is I have given her the most precious gift I could give her.
I have placed her in a warm and loving environment owned and operated by a living saint who gives my wife undivided attention when she visits and always elicits a smile and laughter from my wife with the warmth and sincerity of her love! Being in this home my wife is surrounded by a caring empathetic staff of awesome caregivers who give her incredible treatment and care for her every need. She is constantly in the company of the other residents and interacts with them and their visitors and families with smiles and laughter and always seems happy when I come to visit.
She is receiving professional care to meet her needs and it is care I could never have given her at home. Had I kept her at home she would have been in an environment where her only social contact for most of her day would have been with me and her care would have been less than adequate because I do not possess the skills nor the knowledge to provide the care she needs at this time in her life. When I think about the last many months of our living together she was always anxious and depressed.
She stopped showering and began sleeping in her clothes. She thought we were living in her mom’s house and she always wanted to get out and go somewhere every day. We were putting 1000 miles on the car every 3 weeks just going for rides to stay out of the house. She would frequently introduce me as her cousin when we were out and met someone. I was struggling to cope with her behavior and trying to meet her personal hygiene needs and when I tried to bring care givers into our home to help meet her needs she became angry and lashed out at them so that it was not possible to meet her needs in that way.
I was truly unable to cope with her needs. Placing her in a care home was the only option that made sense and although it was the hardest thing I have ever done in my life I have come to understand that it truly was an act of my unconditional love for her and it was the best thing for her even though it left me lonely and depressed for many months as I struggled to come to terms with what our lives had become.
The flash of insight that came to me that evening has allowed me to see what my oldest son saw early on when he visited his mom at the facility. After the visit he said to me “Dad I think this might be the happiest Mom has ever been in her life.” How ironic is it that in suffering this cruel disease my wife may have finally escaped the lifelong depression she has struggled with since her dad died when she was six!
Learning to live on my own
Now that my heart was at least beginning to acknowledge what my head had known for some time, it was slowly dawning on me that I now had a new freedom to address. I no longer had to concern myself with my wife’s everyday needs but now only had to deal with my own. As I had said before I continue to attend a support group and I have also continued individual counseling. These are things I highly recommend to anyone on this journey. Support groups can be joined without cost but individual therapy may come with a cost if your insurance doesn’t cover it.
The issue of reimagining my life given my new circumstances had come up in the group on several occasions and it also began to surface in my individual therapy. My therapist opined that for the entirety of my married life I had repressed my own needs in order to meet my wife’s needs. We basically decided that I had often subjugated my own personal needs to make sure my wife’s needs were met. My therapist said it was time for me to begin taking care of myself because I had been neglecting doing so most of my life. While when I thought seriously about this and accepted it as true I also accepted that it was my free choice to do so.
Taking care of myself
Confronting my need to take care of myself meant first assessing my needs and learning new behaviors. I have always been someone who professes that while we don’t control much of what happens in our lives we do control our behavior and our attitudes. We get to choose how we respond to our circumstances and what we believe. Much of what we believe has come to us without much reflection shaped by our upbringing and life experiences.
For example, I was born into a Catholic family and began attending church shortly after birth. I was heavily involved at the church through my formative years while attending public schools. I graduated from a Jesuit Catholic University and have continue to practice my faith my entire life. In fact one of the things that I have done since my wife’s placement is to attend daily Mass. My Catholicism brings me comfort but it also presents me with challenges.
Deciding how much to share of my personal journey here is difficult for me. I understand that my journey is not anyone else’s journey but I am hoping that by sharing some of the pain and difficulty I am facing I will help someone else to understand how personally difficult this can be and help them to confront and work through whatever their own particular issues are.
What to do with the hours
Having been virtually joined at the hip for 51 years and never having lived alone in my life I was now confronted with hours of time to fill that had previously been pretty much automatically filled by ordinary activities of married life and sharing time with my spouse. Modern technology has made spending endless hours easy one only has to sit at your computer or sit with your phone and scroll mindlessly engaging in whatever the algorithms feed you.
I blindly began doing that. One of the things I most missed being alone was the everyday exchanges and the intimacies of married life. Believe me when I say there are many opportunities to meet people online you simply have to click your mouse or touch your phone and you are immediately connected to a “person” with whom you can interact. Frequently you will receive an unsolicited text on your phone from someone who “accidentally” texts you while trying to text a friend of theirs.
Other times you may get a friend request on Facebook or on some other app. It is easy to get inundated with these opportunities. My advice is to click delete and report as spam! Scammers have become super sophisticated so beware. Never send money to nor invest with any person you meet online and have not met in person and vetted. Billions of dollars are lost to scam artists each year!
Many of the members of my support group have already lost their spouses and are dealing with the grief that comes from such loss. They like me are trying to reinvent their lives. The significant difference between their journey and mine is that my wife is still alive and we are still in a loving relationship that is significantly altered by her disease. For me trying to figure how and if I can meet my need for companionship and some form of intimacy while still loving and caring for my wife is my immediate challenge.
Again this is my personal journey and may or may not resonate with you but I offer it as a way of illustrating that trying to reimagine your life while on this journey requires taking an honest look at your own needs and a willingness to address them for your own health! Again I stress you do not have to do this alone. There are groups and individual therapists and even maybe close personal friends who will support you if you only open yourself to them and invite them in.
The choice is yours and yours alone. There will be people that will not agree with some of the choices you make but they are not living your life – only you are doing that. As I have told my group I will never abandon my wife as long as she lives. I will always get her the best possible care available and continue to shower her with my love but honestly I also want to have more. I want to live a life in relationship filled with love and intimacy and not feel the overwhelming loneliness I feel each night as the darkness sets in. Is it possible? How? What will people think?
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