In August of 2010, Dad and I were leaving the hospital where we had been visiting my mother. She had fallen several days before and broken her knee. We both knew it was more than a broken knee. She was about to be moved to the nursing home for extended stay rehab. Although he didn't say it, Dad knew that Mom would probably not be coming back home ever again. He cried every time he visited her. He cried each time on the way home, and I have no doubt there were many tears shed as he sat alone in his assisted living apartment.
The day she was moved from the hospital to the nursing home he finally said the words he had been avoiding. "Mom won't be coming home. I won't be able to take care of her anymore." He started to cry. In that moment, I said the first of two statements that would forever change my entire family..."You know Dad, you can always come home with us." He cried harder and then finally managed to say he needed to hear that.
He came home about 3 weeks later and settled into the routine of life with my family. There were many visits back and forth to visit Mom in the nursing home. These, as would be expected were difficult visits for Dad. Difficult for me too, but mainly because I was the one who got the rundown about how she was behaving (not cooperating with therapy, not wanting to leave her room) and how they couldn't get her to eat. I started to dread going to see her as much as he did, just for different reasons.
So it happened, as it is with my sometimes impulsive nature, I uttered the second statement that would once again change everything. "Dad, I think we should bring Mom home."
That was sixteen months ago. In the beginning I didn't know most days whether to laugh or cry. I wasn't sure I was going to be able to do this. During those first days and weeks, she screamed at me, was uncooperative, and hit me more than once. I found myself thinking....elder abuse? What about caregiver abuse? Then it hit me...I am in charge here and I don't have to be treated this way. So one night when she started to throw a glass at me, I took it abruptly from her hand. She reached out and hit me. I tapped her back, not hard, but to make a point. She hit me again. I tapped her again. She kicked me. I lightly kicked her back. Then I looked at her and asked her how long we were going to do this. She looked at me like she had something good to say, but instead shook her head. We haven't had a problem since.
It is day in and day out the same routine....if we are lucky. Change in routine usually means someone is sick. I have said to friends that life here is like the movie Groundhog Day where Bill Murray relives the same day over and over again. They eat the same breakfast and lunch everyday. They get up and go to bed at the same time each day. Mom says the exact same thing to me every morning when she wakes up. I have started to find myself dreading growing old. I have never feared aging before, but now I do.
I come face to face with the future on a daily basis. Scary stuff. My Dad is 93 and he can't hear even with hearing aids. He can't see due to macular degeneration. Mom, in the late stages of dementia, no longer consistently knows who we are, or who Dad is, and except for feeding herself, is completely dependent on someone else to care for her. She sleeps probably 18 out of 24 hours and Dad is not far behind with his sleep.
I finally realized that the only way I was going to make it through caring for my parents without becoming depressed by the sadness of life's cycle, was to start finding the humor. It is laugh or lose my mind. Let me tell you, some funny stuff goes on here. It is all about perspective. Now I realize that some reading this may find what I am about to say offensive. For that I apologize. I know how terrible dementia is. I also see that in some ways it is an odd sort of gift. She doesn't have to be aware of growing old the way that my dad does. She is unaware of time and age. She doesn't really know that she can't walk anymore or care for herself. She is stuck in happy times. She is not suffering. Mom as she once was is already gone. My job now, truthfully, is to see to it that she has a dignified death. Laughing about it along the way is a great coping mechanism for all of us. Like I said it is all about perspective...
Here are a few of our funny moments....
--The day we picked Mom up bring her home from the nursing home she ran down this list in her head of all of the stuff in her room that she needed to take with her. I agreed with her and told her Jason was on his way to pick everything up and take it to the house. She looked at Dad and said, "Well, they are just making out like bandits." I think she thought we were stealing her stuff.
--The other day, my Dad had been to a NARFE meeting at Mallard's. When he came in, Mom and I were in the bathroom. He came to the door to see where Mom was. When she saw him, she said, "Oh good, my Daddy's home." I said, "That isn't your Daddy Mom it's your husband." He started laughing and said it was ok...he wasn't quite sure who he was either.
--Several nights ago, as I was taking Mom to bed, she told me I was going the wrong way. I asked her where she wanted me to go and she pointed toward the garage and said they had been sleeping on a mattress on the floor in there. No Mom, you and Dad sleep in here. She told me I didn't know what I was talking about but she said she would sleep in the bedroom...this time. The next morning she told Dad she really liked that bed. That it was better than the mattress on the floor. He looked at me, then at her and back at me. I shrugged my shoulders. He chuckled, reached over and rubbed her hand.
--Mom asked me the other day when the renovations on our house would be done. When were we moving was what she wanted to know. I said I hadn't been doing in renovations that maybe she was thinking about the girl who takes care of her on my days off. She said no, it was me. I was moving. I just kind of dropped it and went on. That night after Brooke had given them their dinner she came up and said that Mama was asking her about renovations and when we would be moving. Brooke told her we weren't moving, that we all lived in this house together. Mom's response was to tell her to be sure and clean up our mess when we left. (I think she wants to get rid of us!!!)
--They were watching a UK ballgame and I happened to be downstairs folding laundry. I heard Dad ask mom what it said on the bottom of the screen. (the ticker of announcements/news that runs across the bottom of the screen) She read it out loud to him. Then after about thirty seconds, she read it again. Then again and again. By the time I came out of the laundry room she had read it about six times and Dad was sitting with his head in his hands. I didn't say anything and headed up the stairs. Half way up, I heard her reading it again.
--I take Mom to the bathroom several times throughout the day. Once I get her situated, I try to give her privacy, but remain close so I can make sure she doesn't try to get up on her own and fall. I came into the room and asked if she was ready to get up. She responded by saying, "No. I was in full bloom when you walked into the room." I am still trying to figure that one out.
--I have to be careful at night when I go down to put Mom to bed. She and Dad have usually been snacking throughout the evening, but Dad doesn't pay any attention to what Mom does with her wrappers or food portions that she doesn't eat. The other night she reached out her hand and told me to throw that away. It felt warm and mushy and I was afraid to look. She had chewed all of the juice out of orange pieces and then spit the pulp out in her hand. That was gross. She also sits on unwrapped chocolate bars to save them for later. Dementia and saving a candy bar for later don't go together very well.
There have been many of these moments. Moments where I have to stop myself from laughing out loud. I can't predict how the next months or years are going to go even though I know how they will end. Between now and then I will find the funny moments and hang on tight.