Saturday, January 22, 2011

The Longest Day

It is getting harder to update. This is mostly because I am exhausted, and reliving it all seems to just exhaust me a little bit more, but maybe if I can write a bit, I can fill in the gaps later. Or maybe I won't want to. I am torn between feeling a personal responsibility as a writer to document this and a personal responsibility as a person to rest.

Yesterday was a long day. Matt and I rode up to Sandy, UT to tour another assisted living facility. It was beautiful. The woman who gave us the tour was sharp, responsible, compassionate, warm, and reassuring. Everyone we met was happy, calm, and like the Hospice people, just the nicest people you'll ever meet. The people who live there seemed engaged and happy, not just staring into space. They were participating in a social gathering that seemed like something that my mom could also participate in. It smelled good throughout-- like potpourri. I loathe the way assisted living facilities smell, but I couldn't get over how good this one smelled.

By the time we had seen their apartments with the view of the charming little courtyard, I was sold. Matt and I didn't even have to talk about it privately-- we wrote them a check for the move in fee. Our plans have gone back and forth though, back and forth. We talked to my aunt about my mom going up to Idaho, and one minute Pat says yes, the next she says no. She asks every single person who walks into the house where they got their shoes, are they comfortable? Do you love them? Two weeks ago, she convinced her sister Ann to give her literally the shoes off her feet. Then, today, when Ann was up visiting and wearing her old tennis shoes, Pat asked her if she had new shoes. I was afraid she would take those too. Pat decided the other day she liked my dad's friend John's size 10 (Men's) crocs. So, I got her a pair of crocs, but no, John's were particularly comfortable. I was honestly surprised she didn't convince him to give her his shoes, which are particularly the wrong size for her.

Last night, I sat down with her with whoever was here-- honestly, I'd have to think about it. Who was here? Ah, it was my dad and his former graduate student Didi. I showed her the information from Sunrise, read out loud, got out my computer to show her pictures. She leaned back against the couch and said she was too tired to look at them right then.

That is usually her solution for avoiding things. She tells people she has about six books going at a time, but she is too tired to read, or she has something in her eye. I remember when I taught at the junior high. I had a student who was special needs (I taught special ed). When I would ask him to sort alphabet cards into the correct order, he would bend forward, clutch his stomach, and tell me he was sick and had to go see the nurse.

After we had written the deposit for Sunrise, the adrenalin that had been buoying us through the week just evaporated and we both felt exhausted. I forget that my brother has had a stroke sometimes-- he shouldn't really even be driving, but he has been. We stopped at Costco on the way home, and he felt so lightheaded in the store that he thought he might pass out. He asked me to drive, and then at a stoplight, I forgot that left turns don't have the right of way and almost got taken out by a truck.

We got home exhausted. My dad had requested a hamburger though, so for the first time all week, he sat up in the living room and ate a burger. This is really great, because it's the most appetite he's had all week. He has also had some chicken dinners, but then sometimes he just wants pudding or yogurt.

I checked my email and learned that Tommy has shut down this week. He has stopped turning in math homework, has refused to make up late work, and his teacher was worried that he would fail. I went downstairs and told Matt and started bawling as I was telling him, and then went out to the garage and called The Dom (my next door neighbor, running partner extraordinaire, licensed counselor) and sobbed about Tommy's math grade on the phone and worried that I needed to come home to deal with it, but I didn't want to choose between my dad and seventh grade math. Tommy has been having trouble in math all year, but apparently this week it's gotten worse. Carol talked me off my ledge and told me that Tommy is going to have to step up, and so I called him and told him that later. I have explained to my kids that if I'm not out here, Grandpa doesn't get to stay at home. Matt can't do this alone. The two of us cannot take care of the two of them, and I am worried enough about Matt. Last night I seriously debated taking him to the emergency  room. Fortunately, he went to bed early.

 I did too, and my dad has started being all sneaky and not wanting to wake me at night when he gets up to go to the bathroom. But the monitor is up so high that I hear the bed creak and go to him. He had a dream last night about Leonardo DiCaprio converting to Judaism. He didn't get up that many times-- four? And really, I just like to get up to make sure he doesn't fall. But apparently, when Matt came up at 8:20a.m., I didn't look so good because he told me to go downstairs and sleep, which I did until almost noon.

I got up feeling rested, and thank God I got the extra sleep, or I don't know how I would have gotten through this day. Today, I did not shower. In fact, despite the people coming and going all day, I didn't even get out of my pajamas. I just put on a bra. My hair is still sort of half sticking up. First thing, I learned that my brother had had a long morning:

  1. My mom decided she *wasn't* going to Susan's, so she and Matt talked about it until my dad finally called her in and told her that he doesn't want her there when he dies. I asked him about it briefly later and he said, "You and Matt cannot take care of both of us." And that is the truth.
  2. Last night, my dad started asking Matt and I when we were leaving and going back to work, and weren't we going to take turns being out there? The hospice doc had come the day before and told my dad that his father lived with melanoma for four years-- I can't even recall right now whether I've already said this. My dad started thinking that maybe that meant that he would live for four more years, or one more year, or whatever. This concerned us mostly because he and his friends have been talking about something all week I can't blog about here, and Matt and I were worried that my dad would spend his last few weeks focused on that issue. Your priorities are different when you think you have a lot of time. So, he started talking about that to Matt this morning, and Matt gently told him that the doctors don't think that's the case. They are saying two to three weeks. My dad still had a great day visiting with people, but I do think perhaps it sobered him up. And Matt felt terrible. It's so hard not to second guess ourselves with everything, but we're both pretty straight shooters. I told him that he just had to do what he thinks is right. We both do.

My mother's cousin picked her up to spend a little time together. Before my mom left, she asked Matt to get a large valise out of the closet. She came back from her cousin's later when their old friend Maud was here. Maud had known my parents since college, and she and her family also lived in Denver for awhile when we did, and told us stories about taking care of us when we were babies. I left Mom and Maud to chat in the TV room. I went into the living room and started looking through some family pictures Bonnie (the cousin) had given my mom. I heard Mom telling Maud that we were trying to kick her out of her house and take all of her money. She said, "You know, maybe I didn't really need to have those kids in my life."

Even when you know that it's the disease talking and not your mother, that is a terrible thing to overhear. She walked into the living room and I said, "Thanks, Mom. Thanks a lot."


"I heard you tell Maud you think you didn't really need to have us in your life." And here is where I started to cry: "And I cannot imagine even thinking that about my kids, let alone saying it out loud."

Then she got mad and started to do her fake crying thing and said angrily that she LOVES me, and Maud came in and saw me crying and started crying and hugged me and said over and over, "It's not Pat, it's not Pat, she doesn't know what she's saying." And Pat was saying, "Am I not to be forgiven for this?"

Maud whispered, "You have to be strong for your dad," so I said I'd get up and wash my face. I got a towel in my parents' bathroom (my dad is in the guest room) and then I just lay down on their closet floor and cried into the towel. My mom followed me [of course she did] and so I told her that I forgive her and I'll be out in a minute. Maud came in a few minutes later and told me that I needed to come out of the closet (not in that way, but literally), so I washed my face and came out.

Maud asked me to walk her to the car, and she told me that my mom had told her that she took the will over to Bonnie's house, because she wanted them to take it to a lawyer. Then, Maud left and my aunt and uncle arrived to take my mom for a ride, and I walked down to the mailbox and back. I felt like I had been punched by the afternoon.

When my mom got back, she asked if Bonnie had come by the house again. She had, to bring a rotisserie chicken and some salad. She said, "Did Bonnie drop off any papers?" And I said, "What papers?"

"Oh, just some genealogy papers."

And that is when I realized that Bonnie still had the trust documents, which also have my dad's advanced directives in it. Um, we really need those papers. So, I called Bonnie's husband and asked if she could bring them back, but they could make copies if they wanted to, or we could make copies. Bonnie was out running errands with the will, but he told me he'd have her call.

Then, my mother started to spiral downward, telling her brother and sister that nobody loved her, she just wanted to die, we were trying to get rid of her, she was in trouble for taking the will to Bonnie's, and no matter what anybody said to her, she couldn't rest. I just sat in a chair in the living room for most of it, staring into space. I didn't have the energy to shower, change out of my pajamas, or do anything. So, then my mother called Bonnie's husband and told him that she had gotten into big trouble for taking the will, and that we had been going through her valise. Matt and I talked after she went to bed about how that must have sounded. "They went through my valise and discovered that the will, which is not even usually kept there, wasn't in there!" As if its absence had alerted us to its absence. I wouldn't really have even realized it was gone today if Maud hadn't tipped me off first, and then my mother asked about the "genealogy" papers.

Bonnie came back with the will, and Mom went running out the door saying, "I got into big trouble," and I just put my head down in my hands.

Writers are supposed to show and not tell. I have shown, or at least tried to, the sequence of the days' events. But I don't know how to possibly convey how stressful and exhausting it is. I feel like a character in a bad Lifetime TV movie, with my mother running around telling anybody who will listen that her children are conspiring against her, that she won't have anything, she is being turned out into the streets, that nobody loves her, and that she can live alone. She even told Maud that she has been driving. Maud asked me about it, and I said, "I don't see how that is possible. She doesn't even have keys to the cars." Not to mention the fact that she is still alive, and the cars are not wrecked.

I realize that I am almost as focused on my own suffering as my mother is on hers. I am not indifferent to her confusion, her grief, her terror. However, if I focus on it for too long, it will disable me. I am incapable of making a decision that will make her happy. For as long as I can remember, if I got her a gift, it was the wrong size, the wrong color, she wanted something different, but thanks. If I want to take her to Missouri with me, I am taking her from her family, friends, and support system. If I want her to live near her family, friends, and support system, then I am abandoning her, and I don't want her around because I won't take her to Missouri with me. If I get her socks, they are the wrong thickness, the wrong color, the wrong size. I have taken her clothes shopping several times over the years, brought things to her dressing room, had her try them on and insist on buying a ton of things. Then, the next day, she would try them on and model them for me (again) telling me that they didn't fit right. I have no idea what her criteria is at all, but then I'd have to take them back. I did this for several years before I finally caught on: If I go out to lunch with friends, I'm neglecting her because she never gets to see me. If I get her shoes, well, her heel slips out of them. The clothes don't fit. This color doesn't look good on her.

She is not going to be happy. She has a beautiful anniversary ring, and I was admiring it when she got it, and she said, "I don't really like it, because your dad picked it out."

I said, "My god, mom this is a beautiful ring."

"A lot of other women get bigger and more expensive ones."

My dad got a special order bed to accommodate her back. Now she says that she never liked it, but my dad did so he kept it, even though it was supposed to be for her.

She lives in a beautiful condo, but she has had it repainted and then not liked the color and had it painted again. She doesn't like the carpet or the drapes, and blinds are too mannish, and a lot of her friends have custom built houses.

At some point, I can't worry about what is or isn't going to make her happy. I have to worry about what is going to make her safe. And that's about all I can do.

Matt's friend Mindi sent us a lasagna dinner and salads and breadsticks for dinner. I ate salad, because on top of everything else, I feel so shitty about how I look. I don't like my hair short, but I can't make it grow faster. It's my natural color, but I'm used to being blonder, so I feel uncomfortable. I've put on a little weight this winter, and it's wearing on me. Yesterday morning I walked for an hour, the first half up as many hills as I could. I hurt my foot a bit running on Tuesday, so I decided I needed to walk instead. Today, I haven't worked out, but I want to go down and use my dad's exercise bike. But I have to weigh that against going to bed early enough not to be a zombie tomorrow after getting up tonight with my dad.

In the midst of our terrible afternoon, Matt and I talked. We think going up to Idaho and then coming back down is going to be too much more interruption in her routine and schedule. Not to mention stressful for my aunt and uncle. So, we called Sunrise and asked when we could get her in this week. Thursday. So, Thursday it is.

We are going to stop trying to be up front with her about it though. She tells us that she has to stay here for another month, because it will take several days to pack. She says she isn't going to leave her house and we can't make her. So, we started talking about other things and pretending she wasn't even talking until she stopped haranguing us. Fine-- if she can't handle being told the truth and having us be up front about things, then I guess we are just going to drive her up there on Thursday and move her in. That feels shitty and cruel to both of us, but we can't go on the way we are now.

If you are still reading, have you noticed how little I've spoken about my father? The person who is dying? The reason I am here? The person I would like to spend some time with, the person I would like to have some peace? Yeah, I noticed that too. Because she makes it impossible to focus on anything except her. She had a house full of adults surrounding her today and catering to her. My dad enjoyed visitors, and we heard his big belly laugh a lot, but I barely got to see or speak with him today.

Now that I've written all of this out, I don't feel like crying anymore, and I don't feel so much like I've been punched. In fact, I think, "Was it really that bad?"

Yes. It was.


  1. Love you sweetie - sending big hugs your way!

  2. You have courage, strength, and character I'm not sure I could ever hope to possess. I have followed your every entry since you started writing again, glued to every word, and in the eleven-ish years I've known you, I have never admired you more. And that is saying something.

  3. I flunked civics because I thought the homework was stupid. The joke was on me, I had to do summer school civics homework too. Your mom needs to be around people she can't manipulate. Love you. Michelle de Seattle

  4. It's 2 am in Missouri. Who knows, maybe you're up right now too. But I'm praying for you.

  5. Sadly, yes I am. And thank you.

  6. You need to move your mom out of the house so you can focus on your dad. When will that happen? Today, maybe?? (I'm quite serious.)

  7. Oh, Jen. I am speechless but sending you much love. What a storm. Breathe and know that you will get through this. I hope you find some time to just be with your dad without having to juggle everything else.
    For what it is worth, which isn't much right now I'm sure, your writing about all this is incredibly lucid and unsentimental. You will be glad someday that you have documented this.
    Holding you in the light.

  8. Thank you, everyone. I think your support is getting me through this. Ilona, I wish they could get her in today, but it's not possible-- just from the standpoint of TB test, legal documents, moving her stuff in, individualized care plan, etc.

  9. There's probably nothing I can say to give you the lift you need, but for what it's worth, you mention that you feel "sho shitty" about how you look. I was thinking the other day that you looked great in your Facebook pictures I've seen lately.
    Hang in there, get through the days.....

  10. I think you are doing an amazing job, you may not feel like you are amazing but you are. Really. There really is nothing you can do make your mom happy, she's clearly not at a place where that is going to happen and really happiness comes from within anyway. One of my coping techniques for things like this is to imagine I'm in a TV show (I'm serious) of the Bob Newhart variety - basically I'm the normal one and everyone around me is a weirdo - it creates a bit of psychic distance. I don't know if it would work for you but you might try it.


  11. Dearest Jen,

    OK I had head full of thing to say, but damn it I just can't find's incredible, and amazing, and beautiful, that you can write about all of this. Continuing to send you love across the miles....Love, Tracy

  12. Wow. Four more days. You can do four days, right? I think. Good luck. You have lots of long distance support. Thinking of you.


  13. Dealing with your mother the way you are is also a gift to your father. Your realization that you cannot make her happy is deeply important. Remember to take care of yourself, dear one. I know that taking the time to write is you doing just that, and making time to exercise. I'm sending hugs and love your way.

  14. Hey Jen,

    Your post brought up stuff I totally suppressed until I read your stuff. I was 12-13 when my dad's mom lived with us. She had dementia like your mom, and she was nice one minute, horrifyingly mean the next. It's not your mom, it's her disease.

    But I cannot tell you how good it felt when we finally had grandma in a facility. She was so much better off, our lives were so much better, and we were happy. It's very hard to have to go through that with someone you used to love so much...but it will eventually be so much easier. It will.

    You'll get your mom moved into the facility and then you'll have some great time with your dad. I hope in a few years, you can say, "Damn, I am so glad I spent that time and was able to be there." I was able to do that with my mom's mom. It was hard but good.

    Good luck. Much love.