My sister Mary has dementia. I have been caring for her for about four years now. Dementia is an affliction that is difficult to deal with and it’s even more difficult to get used to.
I live with Mary in the house we inherited from our father. Neither she nor I have ever been married and neither of us have any children. I am 54 and she is 74, and while this is a significant age gap my sister and I have always been very close.
Even though the diagnosis of dementia was definite, at first I had an underlying hope that somehow, eventually Mary would return to normal. I kept waiting for the old Mary to come back all the while knowing that this is never going to happen. Like it or not, I have to accept it and make the best of it.
Resentment left Unchecked
At first I did not want to accept this. Humbling myself, sacrificing of myself, and becoming a caregiver were things that did not come naturally to me. The result was that I took care of Mary out of necessity, but with resentment. I got into the habit of blaming her for the condition she is in, as if it was her fault, and I failed to realize that she cannot help herself. She does not understand what is happening to her.
If resentment is not dealt with properly, it grows and lingers and can form attitudes that are very negative. I found myself becoming constantly annoyed by the demands that my sister’s dementia was placing on me. I found myself blaming her for acting that way and making my life more stressful.
Regardless, I did continue to take care of my sister on a daily basis, but I also did so feeling that there is nothing in it for me. I began to feel as if her worth as a person was diminished because of her condition.
Whenever we commit ourselves to do something it helps if we can see a personal benefit in the commitment. In the case of my sister and caring for her, I did find a personal and an admittedly rather selfish benefit.
A Controlling Interest
I rationalized that as difficult and aggravating as it was to deal with her dementia, it was worth it for the sake of her monthly income. Mary and I have had joint bank accounts for some time, back to before the onset of her dementia (I was on her account and she was on mine), and Mary receives a nice monthly pension check from having worked for the Federal Government. So I now have complete control of our pooled resources, and this makes life easier, financially speaking. What I found though, is that while having control of the money is nice, it was not enough to change my resentful attitude toward the daily situation that I must cope with.
Lest I paint too dark a picture here, I have never for a minute wished that Mary would pass away and relieve me of her care, nor did I ever wish that I could put her into a home somewhere. But I did find myself in a situation where I felt trapped. On one hand, I liked having control of our monthly income, but on the other, I resented having to be a caregiver. And being a caregiver for someone who has dementia is a challenge.
Growing in Compassion
As time went on I tried different methods of trying to make the best of things. I tried over and over to remind her of the past. We watched old home movies and I showed her pictures of things in the hope that it would jog her memory. I got her out of the house thinking that the sights and sounds of being in public might help her to be more cognitive. Nothing seemed to work.
It soon became obvious that she could no longer manage her own life and needed someone to be there for her on a daily basis. She was no longer able to drive safely, balance a checkbook or keep track of things the way that she used to.
So I turned to prayer. I asked God to help me to care for my sister as He wanted me to care for her. And with that, things began to change. The first change was that I started to feel sorry for Mary which produced more compassion inside of me. I began to see that compassion can rid one of resentment and bitterness.
It’s Not Her Fault
Eventually I remembered my father resenting my mother when she first was diagnosed with cancer. It was as if he blamed her for getting cancer. I realized this may be a tendency in some of us. Instead of accepting a condition for what it is, there is the tendency to blame the one who is suffering for causing us to have to care for them.
But I also realized that Mary never had this tendency. Mary selflessly took care of our father when he had dementia towards the end of his life. She literally did everything for him. When he passed in 2012 at the age of 92 that is when Mary’s condition started to become visible.
So instead of seeing things from my selfish perspective, I tried to see things from my sister’s perspective. She does not understand that there is something wrong with her and she does not comprehend her cognitive impairment. When I finally realized this, it allowed me to stop wanting her around just for the money. I began to want her around because she is my sister. I wanted her around just as she is, dementia and all.
What’s really in it for me?
One practice that really began to make a difference was finding common ground with some of the saints. I frequently thought of St. Teresa of Calcutta as I cared for my sister. She has been quoted as saying, “Love begins by taking care of the closest ones, the ones at home.”
The Holy Spirit began to show me that taking care of my sister was a great opportunity given to me by God, one that would help me grow in love and grow closer to Him.
My sister, being 20 years older, was always like a second mother to me, and I began to think of all she had done for me over the years, asking nothing in return. I began to think of all of the ways that I had lived a self-centered life and how this was a real chance to atone for a lot of that. From that point on, taking care of my sister became a joy.
Another quote from St. Teresa that I find very insightful is this one: “I have found the paradox; that if you love until it hurts, there can be no more hurt, only more love.”
Making Christ Present
By imagining myself actually doing it for Jesus Himself, my entire attitude toward my sister and my own life changed. I take no credit for the change, but I have recognized its presence inside of me. I have learned to be thankful for the sister that I have instead of wishing for the one I used to have. And I now take delight in the things that she can understand and comprehend instead of becoming aggravated by the memories and abilities that she has lost.
One thing Mary has not lost is the ability to love. She tells me that she loves me every day, and I respond in like manner saying that I love her too. I think of someday when she might not be around, and become very thankful that she is here with me now.
I ‘m also thankful that she is not alone and neglected. But most of all, I am grateful that she is happy. Learning to accept someone, simply for who they are, despite their shortcomings is a true blessing. In giving me a person to care for, Christ has allowed me to share in the part of Him that serves others. My efforts alone could not accomplish this. But through the Risen Christ, I receive the privilege of witnessing Him living in and through me, and this benefits both my sister and myself.
I want to share a quote from another saint that I am fond of – St. Theresa of Lisieux.
“We must never refuse anyone, even when it costs us much pain. Think that it is Jesus who is asking this service of you; how eager and friendly you will then be in granting the favor requested.”
Giving out of Love
One of the results of giving out of love, without resentment, is a deeper knowledge of myself and a stronger relationship with Jesus Christ, my Savior.
I now think about how many times He has been there for me, especially when I might not have made it on my own. I think of the tragic possibilities that I have avoided by God’s grace. For instance, I never got into a fatal car crash or injured anyone while driving while intoxicated. I never spent time in prison for doing drugs. I also never overdosed and died suddenly and unexpectedly. It’s almost impossible to count all of the worries and fears and anxiety that God has helped me overcome by His grace alone.
When I think of where I would or could be without His grace and love, I realize that I am not only lucky to be alive, but I am lucky I am not in eternity right now, possibly lost forever in hell.
As He Loves Me
If I am in a state of grace, and I believe that I am, then I of all people need to be thanking God with great joy and humility for being so kind and merciful to me. And now I have someone to care for in the same way. I am now able to give as I have received, to care for as I have been cared for, and to love as He has loved me.
There are times when I do miss the version of my sister that was cognitive and coherent. When we watch old home movies, it is sad to notice how she does not recognize some of our relatives. But I have grown to love her for who she still is, a living human being.
I have come to see that I am fortunate to have the opportunity to care for someone out of love for both her and Jesus. And in the end, I think I have become transformed into someone who is more like Him.
As it says in Matthew 25:40, “And the king will say to them in reply, ‘Amen, I say to you, whatever you did for one of these least brothers of mine, you did for me’.”