My Second Long Goodbye: Chapter 3
Having kissed my wife goodbye and exited the facility I entered my car and began the drive home. It is hard to express the many feelings I was having at that moment. They were a mixture of sadness, grief, anger, loneliness and bewilderment. I drove the 9 miles to my house in complete silence and in a trance such that I was almost on automatic pilot. Even before I reached the safety of my garage the tears were welling in my eyes and once in the garage they burst forth in an uncontrollable flow and I sat sobbing in my car unable to stop them.
It was at least a half an hour before I exited my car. I took my luggage from the trunk and climbed the stairs to my house. When I opened the door I was hit by such a powerful feeling of loneliness such as I had never felt before. Never in my entire life had I lived alone. For the past 51 years we had hardly ever been apart. Now I was totally alone and facing 5 weeks before I would see my wife again. I set my suitcase down and sat in my chair and for the next several hours wallowed in the pain I was feeling sobbing with such intensity that my chest was heaving and my nose was running nonstop.
As I looked around the room and later as I walked through the house she was everywhere and nowhere at the same time. I couldn’t make sense of what was happening. How could it end like this? What was I supposed to do to go on? How could I possible live without her?
Having allowed myself to unknowingly begin the grieving process (because that is what was happening in spite of the fact my wife was alive) my thoughts turned to her. What had I done to her? How was she coping being in a strange environment having had no clue this was going to happen to her nor any input into the decision? I had literally abandoned my wife and left her in the hands of total strangers. How could I have done that? How could I have made such a life altering decision giving her no input nor advanced warning? Who did I think I was? How did I think this was fair? My mind was whirling with these thoughts and I had no good answers for any of them.
The first night alone
As night fell I knew I had to try to sleep but when I entered our bedroom and saw our bed the intense pain of the loneliness punched me in the gut and the stark realization that this was not a dream I was having but that it was the reality of my life going forward hit me like a thunderbolt. She was never coming back. I was truly alone for the first time in my life! As I undressed and crawled into bed her absence became even more profound.
There was no good night kiss. There was no cuddling up behind her and holding her close and whispering in her ear how much I loved her. There was only silence and profound emptiness where for over half a century there had been her warm body filled with comfort and love always there for me as I was for her. I thought this couldn’t possibly be happening. It was a nightmare from which I would awaken in the morning to her bright smile and warm kiss.
For five weeks every evening and night were versions of the first night I spent alone. Crying, feeling pangs of guilt and loneliness and constantly reaching for her to no avail. Days were filled aimlessly constantly trying to figure out what my life was supposed to be now. Friends and neighbors rallied around me and provided me with meals and company. Most importantly I had my support group who fully understood what I was experiencing and supported me emotionally.
Their constant assurance that I had done and was doing the right thing both for my wife and for me helped me to begin to accept the truth of that fact. I knew early on in my head that I had done everything I could to avoid placement but that circumstances came to a head and forced placement. I certainly was in no position to give my wife the necessary help she needed and that was before she became incontinent. The group helped me to understand that what I was doing was an act of profound love.
Again my head knew the truth of that but my heart lagged far behind and even now 21 months into placement my heart feels the intense pain of the journey.
As I have said before no two journeys are exactly alike. There were members in my group that have been able to keep their spouses much longer than I did. There are even members who kept them until the very end while assisting them with every aspect of living from bathing, to toileting, to eating, to dressing and everything else entailed in everyday living. Those people had skills I do not possess and I salute them for what they have done.
Their courage and fortitude are an example to us all but they should not cause you to undertake what you are not capable of. The statistics for caregivers that keep their spouses at home are not encouraging. Eighteen to forty percent of such caregivers die before their spouse. The statistics are worse for male caregivers than for female but they are not good for either sex. Think clearly about your decisions about placing your loved one.
You are of no value to them if you go first! Many things go into making this decision and there are agencies to help you decide. Finances are a major factor. Facilities are not cheap. The size and care level of the facilities also come into play. My wife is in a six bed facility in a private home with five other ladies. There is an activity lady that visits one day a week and the residents spend almost no time in their rooms but mostly in the common area.
Larger facilities often have more activities but higher staff to resident ratios so you should consider whether your loved one will even be able or willing to participate. Staffing ratios are also important and whether or not your loved one will be able to stay in the facility as the disease progresses. Again there are agencies to help you sort through all of these considerations and a good support group like the one I am in will also be of assistance to you.
This decision will be hard. It is the hardest decision I have made in my life. The sooner you begin to face the reality of your loved ones condition and begin to plan for their future the better off you will be when the decision is at hand.
Five weeks apart
So back to our specific journey. While I am working through all my emotions during the five weeks I am waiting for my first visit with Sue she is being acclimated to her new surroundings. She is living in a room with a roommate and it has many pictures and items from our home to make it more comfortable for her. She is on a series of medications for anxiety, depression, and sleeplessness that need to be monitored and adjusted.
So as not to have to take her out for doctor’s appointments I have hired a concierge doctor who works with other residents in the facility. At a later appointment after the five weeks the doctor informs me that it could take up to six months to get the correct balance of the medications. Meanwhile during the five weeks I am in constant contact with Jennifer, the owner, concerning what is going on with my wife. It turns out that the caregivers are having a very tough time getting my wife to shower.
This was one of the problems I was having while she was still at home which prompted her placement. My wife would scream and kick and flail at the caregivers which required an additional person to help and that person was a male. He was necessary because the female caregivers lacked the strength to control my wife when she lashed out. Having a male assist did not set well with my wife and the first thing she said to me when I finally got to see her was that men were touching her.
I tried to console her because I knew why it was happening and that it was going to continue to happen as long as she resisted showering. My wife was also having trouble sleeping. It is important to monitor what is happening with your loved one but it is also important to be able to trust the judgment of the caregivers when they make a decision about care. So one thing when you place your loved one to be sure to check out is the level of experience and work record of the caregivers who will be caring for your loved one.
I am fortunate that all the caregivers in my wife’s facility along with the owner are living saints who I trust completely to give my wife the best possible care.
Our first visit
So five weeks finally ended and I was able to visit my wife for the first time. I was understandably anxious but at least I had the excuse (an example of what we call therapeutic lying a necessary tool for caregivers) for not visiting her that I had been with my ailing mother in Idaho. When you make your first visit to your loved one be prepared if they are anxious to go home or wonder about where you have been. Other than complaining about being touched by a male my wife was fairly calm and never broached either the subject of my not visiting nor about returning home.
This is certainly not always the case. One of the members of my group placed his wife in a large facility and almost immediately started visitations and she cried and begged him to take her home. After many months of this he finally relented when she was placed on hospice and took her home where she died after a short time. He still is wracked with pain at having placed her and for both of them having had to endure the painful episodes every time he went to visit.
The five week non visiting time ended in the latter part of May just before our youngest son’s birthday. Jennifer arranged for us, my two sons and my daughter-in-law and myself to have lunch with my wife on the back patio served by her. It was a class thing to do and another sign I had made the right placement choice!
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