Love is ordinarily associated with acts of nurturing, generosity,devotion, attentiveness, and care. Placing a loved one in a facility is to some degree an act of separation and nurturing is primarily provided by the professional staff. Feelings of abandonment, desertion and wrong doing are common when we place a loved one into a facility. Caregivers can better cope with such feelings of guilt by understanding that the care that is needed can no longer be given, and that placement is an act of love. The journey I began was filled with many emotional factors and continues to play out as each new day dawns.
I have been judged for placing my husband Chuck into a nursing home. I also am going through the guilt, loneliness and uncertainty about my own future, and what will take place if something happens to me. I felt that I was the only one who could give him the best care. So turning Chuck over to someone else’s care was a painful blow to me. Anger, envy and competition developed because they see him every day and I do not. It was difficult to relinquish the role of caregiver, however I have learned that many others also have the same feelings. Like myself, they are very protective of their loved one. Placing Chuck has given me some relief, but also caused me to grieve and feel guilty for not being able to take care of him anymore. I feel guilty if I’m enjoying myself and having a happy day because he is not with me. Caregivers need reminders that they have lives of their own, and are not held hostage by the terrible disease of dementia.
In placing Chuck, I felt a loss of purpose in my life, a loneliness that I have never felt before. There were times I wished I could change places with him and at times I didn’t want to wake up to another day. I believed his life was being emptied of quality or meaning. It was as though I had been targeted with the worst that fate has to offer; I had to carry out what is called “the long goodbye”. Yes, I have felt depressed and hopeless in being singled out this way. But now I know I have found a good home for him, and that is a blessing.
The stress I had when he was home and the aide came late, or never showed up to take care of him, or when he started to wander out of the house, is lifted from me. There were days when he thought I was the enemy and tried to hurt me, and at that point in my life I wanted to die also. There were times he woke me up during the night, asking what I was doing in his bed, who I was, and what was my name. I asked myself, what is life without him? But now my life had to go on and I had to do and accept the things I cannot change.
I have heard a lot of horrible stories about nursing homes, but can only speak on what I know and see. He is in the Veterans Home in Sandusky, Ohio, and I was fortunate to get him there. They had a waiting list of about two years. The advisor at the VA knew more than I knew. He knew the time would come that I would have to place Chuck. I also had a very good Social Worker who saw the stress and pressure I was under whenever I took Chuck in for respite care.
The burden the Caregivers have is terrible. I needed help 24 hours a day. I called it my 48 hour day. It seemed like a lifetime. My own health was declining. My family doctor and heart doctor told me if I didn’t start thinking about placing him, I would not live to take care of him, and then he would be placed anyway. But I was fighting it. I didn’t want to be left alone. In the end, the social worker was right. Now I have the comfort of knowing he is being taken care of each day, and that is a lot of pressure off of me.
But then come other pressures in life that you have to face. There is a whole new life that you must now face. It is important to realize that you are not relinquishing the care of your loved one to strangers. You are simply redirecting who provides that care. You can continue to have as active a role in the delivery of this care as you want. Personally, I oversee Chuck’s care. I have not seen anything but love, compassion, and caring for him and for all the patients in his unit. They never know when I will visit, and I watch as the nurses and aides do their jobs. It is a very hard job, and we must commend the professionals that do this work every day. It takes a special kind of people. Go and visit a few, and check them out first. You have a say in what they do. Remember, you are paying for a service, so you have a right see that it is being done properly. You are in charge and you can check to make sure your loved one is getting the care he or she deserves. If you have a complaint, talk it over with whoever is in charge, and if you don’t get satisfaction, go higher up until you get an answer.
I’ve had a long road these past six years, the last two were the worst. I was in isolation. Friends left and calls stopped. But God had a plan for my life. I could not be the person I am today had I depended fully on other people. I had to learn, and am still learning how to go on with my life. New friends came into my life and helped me along this new journey. No one can tell you to place a loved one in a home. You have to decide for yourself. People tried to tell me, but I wasn’t listening. I thought I would never place Chuck. In time, I realized that I could not handle his care alone and it was taken out of my hands. As much as I love him and miss him, I know in my heart I cannot go back and take care of him again. He is happy and content. This is the road I am on for now, and I know that if anything happens, the doctor’s and nurses are right there for him. I was concerned that if something happened to me, who would take care of him? Now I don’t have that worry because I know where he is. So trust in you heart that whatever decision you make will be the right one for you and your loved one. No one can live your life and no one can make that choice but you.
People think when you place a loved one in a home you are free. You are never free. You always think about them, check on them and make sure they are all right. I just pray that I can go on with my life. Only time will tell. As time passes, we will know if we have adjusted to our new life or not.
Carolyn Haynali
