Learning About Love – Alzheimer’s Caregiving

I am a case manager at Home Helpers Home Care Elgin.  I get the opportunity to meet many different people and learn many life lessons from them.  The afternoon that I met George and Helen (due to confidentiality issues I can’t share their real names) I knew I was going to enjoy getting to know them.  But I had no idea to what extent knowing them was going to change my life.

George was having some heart issues and he wanted to make sure there would be a caregiver available to come and help out with his wife Helen if he ended up in the hospital.  George and Helen are originally from the south and are hundreds of miles away from family and so there’s not really anyone around to help out.  George wanted Helen to become familiar with the caregiver so that it wouldn’t be as disruptive to her if the time came for the caregiver to move in for a few days.  All this preparation was due to the fact that Helen has Alzheimer’s.

Helen was about as sweet-natured a woman as you can imagine.  Always offering food, willing to share a story (or at least as much of a story as she can remember), or just chat over some southern sweet tea.  George is a kindhearted, but rough around the edges, southern farmer who knows how to work hard.  They’ve lived a modest life and put more stock in family then possessions.  Over the past year my fondness for them has grown and I’ve grown to respect George because of the unconditional and seemingly endless love he shows for Helen.

For the first few months we worked with George and Helen, George wanted her to keep normalcy in their lives. Almost every week we’d spend time going out to the local restaurant that they used to go to.  Helen began changing and would get ornery with George and refuse to eat or take her medication and George never got frustrated.  He would ask the caregiver to encourage Helen and she would happily comply for the caregiver.  It broke my heart to watch this man slowly lose the woman he had known for 75 years.  Each day as this disease claimed Helen’s mind further it was hard to know what to expect.  Alzheimer’s is not as romantic as it’s portrayed in “The Notebook” and memories are not all a person is losing.

George wanted Helen to be able to see “home” one more time.  So he decided to take the trip from the Chicago suburbs down to the family farm in South Carolina.  He said he wanted her to see her sister one more time while she could still recognize her.  I can’t imagine how hard that drive must have been.  Helen couldn’t drive for more than two hours without stopping to go to the bathroom, or walk around.  She would always be warning him not to hit other cars that were hundreds of yards away.  After a couple days down there Helen had an episode late one night.  She started pacing and getting restless because she didn’t know where she was.  She was crying and frantically trying to pack the suitcase because she wanted to go home. So George did what he always does.  He quietly calmed her down, packed the car, and started the long drive home.  He knew she needed to be somewhere familiar.

Helen was not only forgetting people and places and asking George the same question six times within an hour, but was starting to resent George.  She would scream at him, call him names, and insult his ability to care for her.  As quickly as Helen was losing her cognitive ability, she was also losing her capacity to do normal daily functions, such as walk, get dressed, and go to the bathroom on her own.  She was unable to sleep through the night and George would be up with her 4-6 times a night.  Yet, he never complained.

George is not a wealthy man, but he said he’d spare no expense to take care of her and do what’s best for her.  He went to the best neurologists, but was never pushy with her.  He ripped out carpeting, rearranged furniture, and even had the laundry room moved upstairs so that he didn’t have to leave her alone for even a few minutes while he did some chores.

I could see the stress aging George and he was beginning to slow down.  But he still continued to take care of Helen.  He would call us for help an extra day or two throughout the week so that Helen didn‘t have to go out and go grocery shopping, or tag along to a doctor’s visit.  Helen was getting to the point where walking was a major effort.  She began functioning on a lower level than her two-year-old great granddaughter.  Her fits were becoming more frequent and she was getting more pointed in her anger toward George.  I knew that there was nothing that could be done.  The disease was tearing away the essence of this woman.  George was experiencing a complete abandonment by his wife of 61 years while this disease ate away at her.

George had days where the situation was really getting to him.  He would get frustrated and have no idea how to respond and patience would wear thin.  Even when there were days that he wanted to be anywhere but that house, he put her needs ahead of him.  Some days George can barely wait for that caregiver to walk in the door so that he can go outside and work in the garden alone, in peace and quiet.  There are days when he starts to raise his voice and decides it’s best to leave the room and let the caregiver work through issues with Helen.  I can’t imagine how difficult it would be to be in his position.  Yet, he handles it better than I think I ever could.

I watched all this happen as a case manager who was there, but still so removed from the situation. There was little more that I could do to help than offer suggestions and recommendations and hope that George would accept.  I had never known the Helen that George did.  I knew the Helen that she had become.  I was taking care of her as a job and liked the feeling of helping someone who needed it.  I learned a lot about compassion and about serving others when it’s uncomfortable, but there was so much more for me to learn.

I’ll never forget the time I met George for coffee while the caregiver was with Helen and we sat and talked about Helen.  We sat for over an hour while he shared that he never wanted her to feel bad at all for her actions.  He didn’t want her to think there was something wrong.  He wanted Helen to know that he loved her more now than he had the day he married her.  He wanted her to know that nothing would change that.  Even though she was probably completely unaware of all the sacrifices he was making and in how many ways he was neglecting his own needs to make sure she was treated like royalty.  I listened to stories of their childhood, their teenage years, and their marriage.  I heard happy stories and heart-wrenching times in their lives.  It was a window into who they once were and how it made them who they are now.

George said as difficult as it all is to handle, Helen is still his wife.  Even when he’s frustrated and exhausted,  Helen is still there with him.  Although she’s lost nearly all of her short and long term memory, even though she can’t understand sentences with more than about four words, George will never stop loving her.  He’s never going to resent her, or get angry about the situation.  He’s not going to be frustrated because of her accidents or yell at her for soiling her clothes. He’s going to selflessly cherish each day that they have together.  Even though Helen barely recognizes her own house and at times doesn’t recognize anyone around her, George is going to keep doing what he always has.  He’s going to love Helen. He’s going to keep on carefully pick out clothing that she loved to wear.   He’s going to wipe her chin after she eats and hold her hand as they fall asleep watching television.   All the while doing it gladly.  George doesn’t see this as an obligation, or a hand that life dealt him.  George knows that he chooses each day to get up and take care of Helen because he loves her.

At my age I can barely imagine being alive 61 years, let alone married for that long. I don’t know what it feels like to love a spouse or take care of a slowly dying family member, but the one thing I do know is that I want to love like George does.