Love is ordinarily associated with acts of nurturing, generosity,
attentiveness, devotion, 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 wrongdoing
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.
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