How can caregivers watch their parents decline right before their eyes?

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Q: It hurts to see my father with Alzheimer's deteriorating before my eyes. How can I accept the decline?

A: Many people who have experienced a loved one's dementia have said that given the choice, they'd rather deal with almost any other ailment, no matter how painful or debilitating. There's little we can do to fix the deterioration of memory, communication skills, and reasoning that dementia steals away. Few experiences are as frustrating as watching a once-vibrant person deteriorate into a confused stranger. It's not fair, it's not right, and it's hard to accept gracefully.

Try to remain calm. Pain and helplessness breed anger, and anger about the situation may spill over onto the person. Answering the same question 20 times in one afternoon or hearing your loved one recite a skewed account of events for the hundredth time can make you want to scream, but losing your cool helps nobody. Remind yourself that your father did not develop dementia to annoy you: He's not doing it on purpose, and he can't help it. And it isn't your fault, either. It just happened.

So change the subject. Suggest that you go out on the patio together and look at the flowers. If all else fails take a break, and do something that will help you regain control. Take a walk or grab a cup of tea. Call a friend. If you can keep your wits about you, remain in control, and take care of yourself, you'll be more "present" (and pleasant) for him, and you'll both benefit.

Dr. Robert Bornstein, PhD

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Robert F. Bornstein, PhD is Professor of psychology at Adelphi University, and has published more than 150 articles and book chapters in psychology. He co-authored (with Mary A. Languirand, PhD) "When Someone You Love Needs Nursing Home, Assisted Living, or In-Home Care."

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13 Comments

It hurts all of us to see people that we use to think of as a tower of strength, love and support for usand watch them detioriate. I cared for both my parents because I absolutely refused to send them to a home. My mother had heart disease, high blood pressure, diabetes and arthritis and my father had dementia, and very painful aggressive small cell cancer. I feel that it is my honor and privilege to take care of them and make their last days here on earth enjoyable and peaceful, as much as possible. They provided for me, they worked for me, they sacrificed for me, they gave me shelter, food, clothing, toys, college, birthdays, alot of love, hugs, kisses and Im going to get angry because now I have to return the favor? NO...thats not what you do. As far as siblings fuggedaboutem..Take pride in the care and love that your investing in your aging parent. God is the one who will bless you in the end. Not your brother and sister. When they are aging probably no one will take care of them, but when you are aging maybe someone sweet, kind and patient will make your last days on earth peaceful. In their last days they want to be surrounded with family and they want to know "did I do a good job, was I a good mother or a decent mother?" When my mother and father died we let them know "its okay if your tired and you want to go..its okay..youve done your job - go in peace knowing that we love you, you were a great father/mother and thats what its about. Then my father took his last three breaths and died in me and my sisters arms. Thats what its about..to be held by someone who loves you til your last breath.
God bless you and all of us! It really is a special honor that we ended up our parents' caregiver. I used to get so very angry at my siblings, because they were so selfish and thought they were getting away with something by staying away and letting me drive myself into the ground. I don't get AS angry any more, and I don't drive myself into the ground any more, because that is not what it is about. I still get angry at times, but it is almost to the point of feeling sorry for my siblings now. Really, I don't think I could live with myself if I were in their shoes; but, then, who knows for sure? And who cares, all we have to worry about is our feelings and the person/people we are caregiving. When I; feel unappreciated and taken for granted, I thank God that I have the health to be where I am! I am not doing it for the glory, anyway, so I look at the real picture and everything falls into place. Thank you all for being here and sharing your experience, strength and hope.
Thankfully my sister and I do a pretty good job of sharing the responsibility of sharing the caring of our parents. There have been times when she has had to carry more of the load and there are times when I carry more of the load but in the long run it works out.