Never have a serious conversation with a person with Dementia. Especially if you are like me and tend to want to take them seriously. I’ve been struggling with saying my goodbyes to Daddy. Do I say them to him when he is as close to being Daddy as possible, or wait and just talk to Lewy?
Every time I give him food or liquids or go to his bedside, I try looking deep into his eyes to see who’s inside and practice my speech. I have progressed to the point I can now get through the first line without crying. Maybe by tomorrow I will be able to get through the second line.
Yesterday, or the day after the hospital run, Lewy was in full force. I could not calm him down or convince him that he needed to try to rest a bit. I’m not sure why I think he needs his rest. He sleeps 23+ hours a day, most days. What I’d really like is a visit from Dr. Cutie Pie to talk to Lewy and yell me what he really thinks. It’s so rare to find someone that might actually know something. (I bet y’all were thinking I’d like a visit from Dr. Cutie Pie for myself…no…no thanks…I’ve got the best I could ever have with Hubbie. And he is already house trained. Not many other husbands would go where he has gone and deal with the dementia the way he has.)
But back to practicing my speech. Every time I walked over to him I started in the process like maybe my mouth would actually open and the words would come out. Stubborn words, they just don’t come. How do you say those things to someone who has never said them to you? I was trained well by my Dad…never open up…never say what you think…never leave yourself open to attack…or rejection. So that has been my life. I’ve always feared the rejection. Its always the rejection. I can deal with attacks, but having been told how my brother was the favorite of us two, and with actions from both parents that supported that notion, it’s hard not to recognize the Big Rejection. The one from the parents, the one you never recover from.
So now I am here trying to over come this enormous hurdle of expressing my feelings…
I had thought perhaps yesterday while we were alone, that maybe I could work up the nerve to walk over to him and say what I need to say. I took him some juice. Then I tried the yogurt. Still nothing is happening, I just cannot do it. This feels like The Great Battle, the battle between Good and Evil, the last battle of the war. This war, unlike other wars, ends with everyone winning or everyone loosing. I try to imagine everyone winning, with me saying those impossible words and Daddy responding positively and perhaps maybe saying at least three of those words back. But I know my Dad. He will go to his death before he says anything of that nature to me. So I must be prepared for the possibility that if I can get my speech out that he will reject me one last and final time.
This morning I went in to give him some juice. He said he had something to tell me.
“You….are…the only one…” Here it is I thought…my mind raced… if he says it what shall I say? “You are the only one…that has come to visit….”
Visit?
“You are the only one, except…then he mumbled through some words …”the Coloreds”… and then some other unintelligible words.
“Coloreds?” Yvonne was a black skinned lady. Ever since she started coming over (but now replaced by Summer) he has had dreams about a black lady... ...he has several times lately, brought up “Coloreds” as his generation referred to black folks when they were being polite…
I think he must have done something in his youth to the black nurse he encountered (if she is real, and not a Lewy manifestation) during WWII that he has regretted his whole life. I’ve never heard any stories, but he probably would not have told on himself anyway…Never leave your self open…just what Daddy taught me.
I do know that having been reared by a red neck Tennessee Hillbilly and a North Louisiana back woods poor white mother, that if I ever used the “N” word, my teeth would have been knocked through the back of my head.
But I digress. I was trying to get out those unspeakable words and hope that some might return from Daddy that I could cherish the rest of my life. This is beginning to sound like Christmas, all the hopes and expectations, just to be disappointed in some one or something every year.
Even so, I was trying to find my spine and get in there to talk to him.
Then he called out “DADDY…DADDY! DADDY!!!!” He’s been asking for his Dad a lot lately. I think he is 17 or 18 years old working in the ship yards again. He is always worried about different pieces of steel.
I went to see about him. No, he did not want anything…No he was not hungry…No not thirsty…No not cold…
Then he said a few mumbly words…I went over to see what he was saying. Then it came out perfectly clear…
“I ought to just smack the Hell out you.”
“What? What did I do?” Was this Lewy talking to someone else?
No, it was Daddy talking to me. He was mad at me because I would not get him out of the bed, because I always had to have what I wanted.
“You are always trying to unnumunumin…” “You never unumunummin…” You are just a umnumnumun….”
I’m not sure what he was meaning, other than it was directed at me, and it was hostile.
4 comments:
3rd Wife said...
Relationships between parents and kids are like a kaleidoscope..always changing. Sometimes beautiful, sometimes just muddled.
I have a problem with the "3 words" as well, at least in regards to my parents. Sometimes I can write them in a card so that they can be read in my absence. But I can rarely say them aloud. It is such a sharp contrast to the relationship between myself and my own kids. I tell them I love them daily, and they do the same.
I think about those 3 words alot, and wonder how much I will beat myself up for not saying them aloud when I had the chance. I suspect that there will be quite a bit of self-abuse when the time comes.
Say the words..it doesn't matter whether you are talking to daddy or to Lewy. Know that you can't control his response, that you can only control your actions. Then rest a little easier knowing that you did it.
Stella said...
Oh, you dear, dear child. I want to hold you and hug you. Of all the stories you have confided to us, this is the saddest. We don't do things for praise. We tend to our family members because it is the right thing to do. For now, that has to be enough. You have done the right thing for someone you love. Maybe you were not a "perfect child" growing up---how many of us were?---but you have grown into a person everyone should be proud to have for a daughter. If you have not shown your love and obeyed the Commandment, "Honor your Father...." then it can't be done. Stay strong and for get the "talk".
old friend said...
powerful message, Pauline! This is about you now though and the window for Daddy to come visiting may never be opened again. You just have to do what you feel is right in your soul....for you. You've loved him through the worst ...the evidence of that is all around. And then look around at all those who love you and grab ahold
That's my .02 cents!
pearose said...
Your Dad was raised without being told he was loved - no doubt. I think he has had the same struggle you are having now. He's tried to show you through actions - remember the bike, the first driving lesson and the invasion into you and your first husband's child marriage when you first stayed in their house? Love isn't words, it's actions to reinforce those feelings. He and your Mom brought you up to show those actions to others. He's told you all his life through his actions. The words aren't as powerful as the actions, but they're nice to hear.
Anger is present in dementia. Who wouldn't be angry about losing their mind in those windows of 'normalcy' that become less and less? It's not your Dad, it's Lewy doing the talking and the thinking most of the time. Your Dad feels safe with you so don't confuse Lewy with your Dad.
You will NOT be rejected by your father when you go up to him. If he balks, say it louder and stronger - he may feel a little uncomfortable, but the words will be understood. It is a basic human need to feel loved - so the rejection you fear is based on your version of life as a little girl who could not compete with her brother for her parents' love. Maybe they felt the need to treat him differently because he was needier in that way. You may have seemed more independent than your brother. You were the strongest between the two of you and your parents knew that.
For your own sake, don't project silence as rejection - it won't come easily for him, either. He may not answer you as Lewy, but your Dad is in there, somewhere.
Practice while he's sleeping.