Saturday, October 17, 2009

home

It's a little after three a.m. and I'm telling Daddy yet again where home is. He can't remember. He doesn't know the street or the town; thinks he's still in Peoria where he settled after World War II. "Where is Pat?" His wife, my stepmother, his anchor. "She's at home, Daddy." "Where is home?" And the loop starts again.

My very proper father has to urinate. He tells me "I'm sorry, but I really have to p-e-a." It's the way we said it as kids. It was never pee, never #1, but p-e-a. I am 52 to his 92 and he still surprises me by remembering those little things. But home? Where is home? Where is it?

"I feel so lost. Where am I?" I can say that it breaks my heart, but that's so inadequate as to be laughable. I can't describe the pain. It's actually physical, this emotional anguish. Could my heart truly shatter? It feels like it.

I don't know what to do. This is the second night we've been in this miserable excuse for a hospital. He's hooked up to IV fluids, trying to raise his sodium level to something approaching normal. He walked into the hospital. Now he can't even stand.

"I have to p-e-a, real bad." I call the nurse. Again. No one comes. I call a second time. An aide appears at the door, tells me that the last time they helped him urinate, they put him in pull-ups. That's nurse euphemism for a diaper. Pull-ups. "So he can just go, he doesn't have to use the urinal every time."

She helps him p-e-a one more time, and as she leaves, she grabs my arm and says "next time, just have him use the pull-ups." Use the diaper.

He doesn't know where he is. These two weeks away from the home he's lived in for 50 years have left him untethered. "Where is home? Where is it?" I tell him about his life. "You were born on a farm west of Dodge City. You couldn't wait to get out of there. You left for college on a train, your parents waving goodbye with tears in their eyes. They thought they'd never see you again."

He stops me to say, "My dad, he was a really good man. A good man." We talk about his mother, Wilhelmina. She was a live wire, so like my middle sister. Daddy smiles at that, the vision of his busy little mother and his hummingbird of a middle daughter.

"You graduated from St. John's and went to Washington D.C. to work for the FDA, and then you enlisted in the Army." I tell him about going to Manila, about offloading Japanese prisoners of war from the massive war ships, and how he felt so sorry for them. "When you came back after the war, you had a baby daughter, Karen. You went to graduate school in chemistry, remodeled a huge three story house, and worked full time too." He shakes his head and I think he really remembers those years in Peoria, in the late '40s, early 1950s, when everything seemed possible and he worked 20 hours a day for his little family.

I tell him he went to work for Conoco, that he worked as a research chemist for years and years. He shakes his head and says "I don't remember it. There's something wrong with my brain. It's in a fog and I can't get out of it." I tell him he is very, very smart, that he was known around the world for his work, and he squeezes my hand so hard it feels like the bones will fracture.

"Honey, I have to p-e-a again. I'm sorry." I look at him and I hear the nurse firmly telling me to tell him to just let go. "Daddy, you're wearing a special kind of pants that will keep you from getting wet, so it's okay when you have to go pee, to just go. It will be fine and then we'll change them later. Just go ahead and go where you are. It's okay."

My dad releases my hand and looks at me with sorrowful eyes. He's shaking his head as his face falls. "Oh no, no, I can't. I can't do that," and he starts to cry. I know he remembers this: That his own gentle father, a good man, was incontinent at 65, the result of steroid therapy for arthritis. He remembers the shame on his father's face as he got down from the tractor with wet pants. This he remembers; the painful things he remembers.

I've just told my father to urinate in his pants. In his diaper. He is crying at the very thought of it, his eyes overflowing with tears. He has to p-e-a one more time and the nurses are tired of it.

In an instant, I'm at the nurses' station, where there's plenty of chit chat, not much work going on. It takes a few moments for anyone to recognize that I'm there and by the time anyone speaks to me, I'm past the point of being able to say what I want. I am crying too, just like my dad. I can barely get the words out. We've been awake for most of 48 hours, and this night has been hell.

"I just told my 92 year old father he's wearing a diaper and that he should pee in his pants and now he's crying. I can't do this. You have to help him with the urinal. He can't do it on his own and I can't either and I can't tell him to pee in a goddamn diaper because the very thought of it is breaking his heart. Please help him."

An aide scurries down to the room. The RN on duty comes around and grips my upper arm. If another nurse snatches my arm, I'm going to hurt someone. "This is going to happen. There's something that happens with these people called sundowning . . . " and I stop her. "I know about sundowning. I know all about dementia. It's been 10 years. He wasn't incontinent before he came in here. He has never worn a goddamn diaper." I shake her off and go back to my father.

He's been taken care of and the tears have dried.
"Where's am I?" he asks, grabbing my hand.
"At the hospital, Daddy."
"Where's Pat?"
"She's at home."
"Where's home? Where is it? What is wrong with me?"

I take his hand in mine and in a soft voice, I tell him "It's okay, Daddy. I'll take care of everything. Tomorrow I'll take you to your home and you'll know it when you see it. Just relax and close your eyes and don't worry. You don't have to worry. You're safe and I'm here and I'm not leaving. It will be okay. Just sleep. I love you. Go to sleep."

He squeezes my hand and tells me thank you. "I thank God you're here, honey. I don't know what I would do without you." Half a dozen times tonight he's asked me who I am. Each time I tell him I'm Lynette, his youngest daughter, and it makes him smile. It's nearly five a.m. and he's closed his eyes; he falls asleep at last. His hold on my hand has relaxed and the pained expression has vanished.

I look at him and pray that he's dreaming of home, his home, surrounded by the family that loves him so. I hope he has peace in his dreams, just a little bit. Does sleep take it away? In his dreams, is he strong and healthy and clear-headed? Does the escape of sleep protect him for just a moment from the hell of dementia? Lord, I hope so.

I'm watching my father sleep as he watched me sleep when I was a baby, a small child. All my life he's been there for me, a constant presence, comforting, and safe. I am grateful I can be here for him. I am desolate. I am heartsick. Bereft. I miss my Daddy and he's sleeping right in front of me.

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25 Comments:

Blogger Greg said...

Oh Lynette, this made me cry. I hope writing this experience down has helped take a tiny bit of the sting out of it for you, knowing that so many are reading and praying for you and your Father and that your words help us know we're not alone with this Hell.

October 17, 2009 8:01 PM  
Anonymous Anonymous said...

I am so sorry Darlin. Just so sorry. I will be thinking of you with special love and care. Hugs,
Kamrin

October 17, 2009 8:17 PM  
Blogger Dusty said...

This was gut-wrenching Lynette. I am bawling my eyes out.

And it's what I have to look forward to with my 76 yo father. We are worried that he is in the first stages of dementia. He is at the age where it starts being obvious.

I can say that it breaks my heart, but that's so inadequate as to be laughable. ~ I would agree, and I would also rip the nurses a new one verbally. If they aren't busy they can help him. His pride..it's all he has left now and god-fucking-damn it let him keep that you fucks.

October 18, 2009 2:13 AM  
Blogger Chris said...

Well, you can add me to the list of bawlers! How loving and wonderful you are with him....he's a very lucky man.
Being a nurse, I can only say I'm sorry for what you experienced.....there is no excuse for not allowing a patient their dignity, and they should have known better, sundowners or no. Family does have a different perspective, as you remember the man he was, staff sometimes only sees the 'condition' and the care it requires....certainly not an excuse but often a reality.
You are in my prayers......Chris

October 18, 2009 11:38 AM  
Blogger Dusty said...

Chris, thank you for your perspective. It makes it a little easier for me to swallow, the fact that you are a nurse and you get it.

October 18, 2009 12:23 PM  
Blogger Chris said...

Thanks for that Dusty...There are a few of us left!!!!! I'm retired now...I was a neonatal nurse, so geriatrics wasn't my thing..... I know from my training and being with family as Lynette is now, it's hard and at times frustrating work, large pt loads, not promising outcomes, so not all that much satisfaction. There are nurses who love it, but they are probably the ones who are asking the families about their loved one, so that they have some of the same perspective on the person trapped inside. I made sure the nurse who took care of my grandmother knew that she had once done the same work as her caregiver, and it was her worst nightmare to be in that nursing home. The nurse always made the extra effort to keep her clean and happy!! And my grandmother always let her know she did a good job in her own way!

October 18, 2009 1:38 PM  
Blogger BigAssBelle said...

Greg, that does help, to know we're not alone with this. I just caught up a little with your mom. I am so sorry, sweetie.

Kamrin, thank you. And Dusty, I sure as hell hope not with your dad. We've been trying to figure out when it started with Daddy and I think he was just about 80, maybe. There might have been some signs earlier. It's hard to date things looking back. I found myself wanting to tell all of those strangers passing through his room who he is, who he was. To make them look at him a little differently? Not see him as a weak 92 year old man out of his head sitting up in a fucking hospital gown? I don't know, but the diaper thing was just too much.

Chris, I appreciate the perspective. I recognize that I come from a hate-hospitals-and-most-medical-people stance. That comes out of too many bad experiences, but I know, absolutely, that the vast majority of people working in medicine are enormously compassionate and caring and competent. Why do we keep getting these shitty ones? Three hours begging a nurse to look at my husband because something was wrong, then when she finally sauntered in, his blood oxygen level was 50. Another waltzing around the ICU with his pain meds in her pocket, refusing to hook them up to the pump, until he was so out of his mind with pain I started screaming at her. Hours and hours of him being in agony and then it took a day to get back on top of the pain.

No one bathed or even offered to clean up my father in seven days. On the last day, I asked if we could give him a bath before he went home, because the bathroom's still under construction and now that he can't walk, Pat couldn't bathe him anyway. "He's had a bath every day since he's been here." No, he hasn't. He hadn't been bathed ONCE. We'd been with him 24 hours a day for the last two weeks. No bath, no offer to take to the bathroom. No one ever offered to get him out of bed, to sit him up, try to help him take a few steps. I pushed and pushed and pushed and finally got a kid to help me take him across the room, but after days of no movement at all, he nearly collapsed in my arms. The man in the bed next to him wet his bed repeatedly. Nobody ever asked him if he wanted to use the urinal, no one ever voluntarily changed his "pull ups" (how I hate that term) before they leaked and wet everything over the bed.

This hospital was recently sold to another giant corporation. It wasn't a great hospital before, but it wasn't this bad. For profit fucking medical care. I think it sucks.

This was a med-surg floor he was on, so I'm grateful that at least so far, he hasn't acquired some wretched bug. Gloves? What are those?

Sorry to bitch. I know there are good hospitals, wonderful, caring people who do the work of angels. I just didn't run into any at this hospital.

Oh, and don't get me started on the psychiatrist consulting on treatment of his agitation. "What do you want me to give him? What should I try?" WTF? Crazy.

October 18, 2009 3:34 PM  
Blogger Y | O | Y said...

When my Mom entered an assisted living center at the end of June, she hadn't worn a diaper either. I still don't think she's gone in one yet. She knows when she has to go and will tell you but doesn't understand that's what toilets are for. So we have to watch where she sits in the bathroom because it could end up being over the waste basket.

After reading your account, I'm even more thankful for the folks where my mother is now.

October 18, 2009 4:56 PM  
Blogger Chris said...

Lynette....the care there is beyond anything I've experienced as a professional or a family member....abominable!!!!!!! I retired after working in my first for-profit hospital.....that says it all for me!

October 18, 2009 5:32 PM  
Blogger LSL said...

Oh, Lynette - this was so upsetting to read. Emotional pain can be physical. I don't know what to say except that I'm sorry, so sorry, and that I hope I can have your strength and grace when I go through this with my mom.

October 18, 2009 5:43 PM  
Anonymous Anonymous said...

I love you, Lynette. Please take care of yourself. g

October 18, 2009 8:05 PM  
Anonymous A Canadian Reader said...

So, so sorry.

October 18, 2009 9:36 PM  
Blogger more cowbell said...

I've got no words, Lynette. Goddamn but life is hard sometimes.

October 18, 2009 9:40 PM  
Blogger David said...

I watched both my grandmas descend into dementia and was a volunteer visitor for an elderly woman at the end of her life for a year. Still, it wasn't one of my parents in that bed, so I don't know how it will be when that day comes. But my dad does a lot of proactive research and I'm sure he's lined up good places for them to go and be well taken care of when the time comes.

October 20, 2009 9:13 PM  
Blogger ewe said...

Lynette. It is vital you find support for yourself. You are doing great.

October 25, 2009 11:53 AM  
Anonymous Tater said...

Crying too. Watching them slip away is fucking torture. phoned my parents to tell them of my new business and website, and while they were looking at it, my dad asked my mom who I was. Those are the moments where my heart seems to stop, and the ache in the center of my body is overpowering and real. My heart goes out to you, as does my love. Thank you for sharing this, even though it had me in tears.

October 27, 2009 6:43 AM  
Anonymous Dallascracker said...

lynette, if I could take the pain away and feel it for you, I would.
All I can do is tell you that you are loved, you have people who care about you, and you are a good daughter. Everyone should be so lucky as to have you as a daughter, a wife, or a sister.

October 27, 2009 6:17 PM  
Blogger Linda said...

Lynette,
I just returned and saw your post; I'm tearing up too. Ewe, in a post above, said what I will urge you to do. Find a good support source, someone who has been there, done that. All the little disconnects that are coming can really, really wipe you out. There has to be someone there for YOU too. I know. Been there, done that. Be good to yourself. Your doing a great job. Don't doubt that. Look who raised you.

Huge Hugs,
Linda

October 29, 2009 7:41 AM  
Blogger Elaine Warner said...

I have tears in my eyes, too. Partly for you and partly from remembering going through the same kind of thing with my mom. The only thing I can tell you is that when the suffering is over for your dad, you will not have a moment of regret for the hours you spent with him. In the meantime, try to find some time for you -- I was able to get a massage weekly and I think it helped both mentally and physically.

November 01, 2009 10:53 PM  
Anonymous Mark H said...

Lynette,
I can do nothing but pass on our hearts to you. You've written from the broken heart about a horrific truth going on everywhere, and when it becomes personal, it's the worst things life can bring. I only wish you strength and courage to get through.

November 11, 2009 12:20 PM  
Blogger The Pliers said...

I just wandered in off the cyberstreets from Mérida having discovered your dream-in-motion of relocating to México while working on my blahg list of those who took their toolboxes al otro lado de the Land of the Free and the Home of the Brave's southern border.

I too am shedding tears and want to say that I am sorry about your daddy's mind having gone astray. I can only imagine what that has been like for you and your family by reading your post here today and from having read a few memoirs on the subject but not from personal experience.

I wish you renewed stamina, endurance, and a wealth of support from your readers here and your co-travelers on this particularly treacherous path there.

Amitiés,

November 17, 2009 9:29 AM  
Blogger Chris said...

Thinking of you today, and hoping you have love and support........how's your Dad?

November 17, 2009 9:56 PM  
Blogger ewe said...

Where are you? What are you doing? Happy Thanksgiving.

November 24, 2009 11:57 PM  
Blogger foxy angelina said...

i love your writing!!! mabe u can teach e someday :*

November 26, 2009 12:34 PM  
Blogger Cindy...154 said...

I miss my father, too. He has alzheimer's and he can't talk like he used to, in fact barely at all. Sometimes he moves his mouth and I know he wants to say things and he can't. That is the hardest part right now, the very hardest. I am wondering how things are going for you.

December 06, 2009 8:44 PM  

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