My Second Long Goodbye: Chapter 9
It has been a couple of months since I have written about my journey and a significant milestone has passed – I turned 80 years old! Two more significant milestones are coming up next week - our 53rd wedding anniversary and the 2 year anniversary of my wife’s placement!
Two years after placement
In the two years since the placement I have continued to attend both group and individual therapy sessions and begun to attend daily Mass and engage in thoughtful prayer and reflection. I understand that no two dementia journeys are the same and no two caregivers are either. What is the same to a degree is the struggle and the stages of grief and uncertainty and it is in knowing and acknowledging these two truths that I offer my own personal experiences on the path to acceptance and healing in the hopes that they might in some small way help others along their own journeys!
I cannot stress enough the importance of both the group sessions and the individual sessions in helping me to cope and even grow from this devastating journey. If it is at all possible I highly recommend that you participate in at least one of these therapies and if possible both. The group sessions serve as a support family where you can feel safe to express your deepest feelings and emotions and know that you are being understood and cared for with empathy and concern for your wellbeing!
It also serves as a place where you can receive information and counsel from people who are at various stages of the same journey who have invaluable insights from their own experiences. There really is no substitute for this group wisdom and care! Individual therapy provides a place for deep self examination and reflection about not only what is happening but also what tools you may possess to handle it. One on one counseling is a place where you can examine your relationship with your loved one before the onset of the disease, during the early stages when you were still together and after the placement if there has been one.
For me and I believe for many others one of the primary tasks is to make sense of what the new relationship is and can be! To figure out what is best for you and also for them and how those two intersect and play out in the reality of your new freedom and their confinement. Questions concerning how often to visit, how to encourage friends to visit, how often to take excursions and to where and with whom. Navigating this new reality is different for each of us and also depends on the stage of acceptance one has reached.
For someone who has not yet accepted this situation as their new reality answers to the above questions may vary vastly from one who has come to a full acceptance that life is changed and the relationship is never returning to anything like the former reality no matter how much you wish it to or attempt to force it to by behaving in a way that mimics elements of the former but don’t really fit in the latter. Until you come to full acceptance of your new reality you will continue to be frustrated by your attempts to hold onto as much of what was as you can despite your loved one’s inability to function as they once did!
So for me two years into my wife’s placement I have come to a level of acceptance that allows me to see that while we continue to have a loving relationship that allows us to give each other comfort and express that love when we are together we also each have separate independent lives when we are apart. I recognize that hers is extremely limited because of her deteriorating mental condition but that she is happy and well cared for where she is living and probably never thinks much about me when I am not in her immediate presence although I cannot know this to be true with any level of certainty.
Knowing and accepting that I have done everything in my power to provide for her care and comfort allows me to begin to concentrate on my own wellbeing and attempt to forge a new independent life when I am not with her. Getting to this place of acceptance has not been easy and at times I return to feelings of guilt and doubt but those times get fewer and far between and less powerful with each passing day.
Reinventing my life
So where exactly am I now? I am currently in the midst of reinvention! As we talk about in the group sessions because our former relationship is no longer our safe harbor even though we wish it were we are now confronted with reinventing ourselves so as to not allow ourselves to wither and die from sadness and grief. For me because my spouse is still living albeit in a confined facility my situation differs from one whose spouse had passed.
Because my spouse still lives and I continue to love her deeply and because I fear judgment from those around me it makes it hard for me to write what comes next but it is what is in my heart and I think it is important to share because I think I am not alone in wrestling with these feelings and desires and in confronting them here maybe it will allow others to do the same for themselves. So here it goes!
I still feel a deep need for intimacy! I desire to be touched and to touch and to feel the warmth of someone close to me! I feel the need to be able to share the love still in me with someone who can reciprocate that love in a meaningful way! I want to be able to feel fully alive and share experiences with someone who can share them and feel the joy and make new memories with me. I want the remaining years of my life to be filled with love and care and compassion and excitement. I suspect I am not alone in how I am feeling. There are probably many people on this dementia journey feeling similarly but who like me are having difficulty dealing with their feelings and afraid to voice them or act on them for various reasons! Surely I am not alone here?
Making sense of the need for closeness
So now the question becomes what can and should we do with these feelings? Do we dare to act on them and suffer the wrath and condemnation of those who disagree with us? Do we have the courage to claim our lives as are own not subject to the judgment of others? Can we fully understand the reality that only we live our lives and it is only for us to choose how we do so? For me it is not only other people but also my church whose reactions I must consider.
Do I have sufficient strength to act according to my own conscience and believe that it guides me truthfully according to His will? I pray daily in submission to His will and yet I know that it is I who must act through my own volition and take whatever consequences come from my choices. I am fully responsible for my actions and therefore need to be fully accepting of their consequences and I am! And so I say that I am open to whatever comes my way in terms of intimacy with another person.
If it comes I am prepared to embrace it and if it doesn’t I am prepared to be alone!
I am reminded here of two experiences I am aware of that touch on this situation. The first occurred when my mother-in-law was living in a care facility with several other people of both genders. There was a man and a woman also living there whose spouses regularly visited often at the same time. As time went on the two residents became an item and began more and more to forget their spouses. As the residents grew closer and closer their spouses began to see each other and eventually they also became an item unto themselves! Oftentimes circumstances place people in our lives that are either there to teach us a lesson or to satisfy a need and if we are open to them they will be a blessing in our lives.
The second experience was one played out in the public eye because it involved Supreme Court Justice Sandra Day O’Connor. Her husband had dementia and she famously stepped down to care for him. He was soon afterwards placed in a care facility where he fell in love with another resident. She is said to have been thrilled that he found someone to love him even when he was confined. God (or the universe if you prefer) works in mysterious ways and if we are open we might find happiness and love in places we never imagined. I believe God is love and His wish for us is to be surrounded by Him and to share the love He showers on us with all those we meet! I am open to doing so and I hope you are to!
Continue reading