Friday, January 28, 2011

Taking it day by day now

I don't think it's an exaggeration to say that we got my mom settled just in time so that we can fully focus on our next leg of the journey here at home. Yes, it feels a little weird to call my parents' house home. However, since I'm living here right now for the foreseeable future, I suppose it's apt. Last week, he was so strong that I thought somehow that he'd continue like that for awhile. However, this week, his decline daily is visible-- at least if you are his children and watching him sharply.

Yesterday, he was starving when we got home from the nursing home, so Matt went out and got him a burger. My dad had been hanging out with his brother-in-law and then two neighbors while we went up to Sunrise, and he had stayed awake all afternoon. He said that surprised him. It surprised me too, because he has been sleeping so much throughout the day. However, even when Matt brought the food, my dad vanished into his room for awhile with the door shut. His incontinence is growing more and more frequent.

I keep fresh clothes in the bathtub for him, on the shower chair. Last night I added underwear and pajama bottoms, and for the first time, a few Depends. He doesn't say anything to us about the incontinence-- and who could blame him? So Matt and I talked about whether or not to offer him the Depends. We finally settled on offering them silently so it's his choice. I dreamt last night that I found them shoved, unused, into the trash, but when I went to the bathroom this morning, they were still on the shower chair.

His balance is wavering, and he walks more slowly and carefully, though he does continue to be pretty ambulatory. He has been wearing his watch all the time, and this morning I noticed that whereas it was tight just a few days ago, it's now hanging on his forearm. I can't believe the body can change so fast.

I was telling a friend that I wonder if it isn't like the final days of pregnancy when you are so miserable, you would do anything just to get that baby out. Perhaps our bodies do us the great favor, at the end, of making us so miserable that we would do anything to leave them-- or at least be somewhat relieved when we are finally released. It struck me for the first time in my life this morning how intimately tied up to this world we are physically. I mean, of course I have understood my entire life that my body makes me alive-- but I don't think I had any idea what that really means. I have seen animals die in my arms, but I have no experience with people dying. My experience is very limited to funeral homes, and hasn't been all that much at that. So, I am fascinated and horrified by what I see happening to my father's body day by day as he prepares to leave this life. His life.

People have told me they are praying for me and my aunt actually sort of joked that she knew maybe I didn't want my name on the temple prayer list. But I appreciate all of the prayers. I still pray. I pray all the time. It's comforting, and I grew up praying. I can't see that it hurts anything. I have read reports of studies that show that even if people don't know they are being prayed for, prayer has beneficial effects. I wonder if I'd even be conscious and still capable of thought at this point without all of your prayers and support. I will never know. But thank you for all of your well-wishes and messages and support and prayers and love. I do feel it-- I feel it all the time. Thank you.

One of my friends commented that as for funeral arrangements, we could have it in a church for free. The only problem with that is that my father has only three specifications for what he wants:
  1. The same funeral home we've used in our family for at least the past 24 years. Maybe more.
  2. My uncle Harold to give a graveside service.
  3. No LDS service. And that means no LDS church. He has asked me repeatedly  over the years to make sure for him that that does not happen, and so we are determined to honor his wishes.
Any further plans we make are our own-- to gather, to honor, to grieve. Grief is for the living.

I'm not surprised by how many lives my dad has touched with his. I am a little surprised and deeply grateful that all of these people have given him such a tremendous show of love and appreciation. It's a mighty sendoff.

So, yesterday was not as bad as we had anticipated. Not by a longshot-- and that is saying a LOT. We took care of a lot of phone calls yesterday morning. The nurse at my mother's doctor's office and I recognize each other's voices on the phone now. It is critical to get her medication list accurate in part because her care levels increase based on the number of medications she is on. And that increases costs significantly. So, here's the used car deal with nursing homes as far as I can see: You go in without your parent and describe her. They assure you that you won't need any levels of care, from your description. They tell you a price. You write a check and hold the room. Then they start telling you she needs like two levels of care, so the price goes up $600 a month, but by this time, you're exhausted, shell-shocked, out $1500, and where the hell else can you go? That would even compare to the loveliness and competency of this place? I mean, even though I think there is a bit of used car salesmanship going on, I still really love the place and feel comfortable there.

When we were on our way up, Burke called to let me know that my mother discovered their bigger apartments almost immediately and started in on her rampage about how cheap I am. He just wanted to give me a heads up to let it roll off me. She actually didn't start in on me about that, though. She asked how dad was doing a lot. She was worried about whether she had said terrible things to Matt, and she was sorry. She thanked all of us a more than once for coming up to help her. She sat in her recliner sedately as six adults worked around her to unpack her and make her apartment cozy for her. In fact, she was so sedate that I wondered what she was on. I still don't really know the answer to that, but we found two stashes: A box of Fentanyl packages and a bottle of Hydrocodone/valium. Both of which we confiscated. Burke had to hear about that later.

My mom went down to the nurse to have her TB test results read on her forearm, and I told everyone in the room that I was taking her cash, except for the $30 they recommend, and her credit cards. She found out that her cash was missing before we left, and I told her I'd taken it and I told her why. She went shrieking down the hallway to report that I had stolen her money. So, the staff came and told me that they assumed I was doing it for her protection (oh, and also because you TOLD me that's what you prefer), and I was muttering, "No, we decided to put our mother in a $4400/month facility because I get my jollies from stealing $100 from her." So, I gave the money back to her. Then the staff was worried because she had too much money. I just told them, "I don't care if it gets stolen. That's her problem." And that is the truth. It would serve her right.

At one point, my mother asked if she could get a Diet Coke, so I went hunting. I ran into and met the executive director, Ryan, and asked him about it. He said they were having pina coladas for social hour and did I want one with rum? I said, "I knew there was a reason I liked this place." He couldn't find the rum, so I gave my mom the virgin pina colada, but Dude, points for trying.

When we had unpacked her as much as possible, Lori took her down to dinner. Mom invited me to join them, but after the hell of the whole money situation I just looked at her and shook my head mutely and sat in her recliner instead. When they got back from dinner, Lori said the food had been great, but my mom made a horrible face and said it was terrible. It was chicken fajitas. Dereck and I like to joke that my mother doesn't like food with flavor. She complains about things being spicy all the time, when assuredly, they are NOT spicy. I've seen the menu: They have veal piccata on the menu and Beef Wellington, salmon, leg of lamb. These are daily and weekly lunch options. It would have cost me $11 to join them for one meal. If she decides the food is horrible, it's her loss.

But she actually seemed pretty cheery because she had nabbed an apple and an orange. She cheerily offered to go get us some if we wanted, and it struck me that she already feels comfortable there. We had to leave to relieve the neighbors, and Lori had to go get her kids, so the three of us left at once. Burke and Mark had come down for a final load in the truck, so we knew they'd be back. But she didn't seem upset that we were leaving her all alone.

I went back, though, and wrote down phone numbers for her. Then, I ran into a resident in the hallway and asked him to go introduce himself. I took him down to her room and left them chatting.

Burke called here last night by accident, trying to make sure Ann had gotten home ok (and he was EXHAUSTED yesterday-- still the good brother taking care of his flock though). He said she had been angry about her meds when he left. He said, "Lori totally feels for you. It took her one day. 'NOTHING makes that woman happy!'"

I hate to say I told you so... No, I don't. I told you so.

I reckon we have to go back up there today, or at least one of us does, to take forgotten items or make sure her paintings and TV get hung and mounted. However, I think from now on either Matt or I should always be here. I need to mention that to him today, see what he thinks.

For now, I don't know what to do about a phone. She needs me to dial the number for her every time she makes a call, and they are willing to bring cordless phones to the residents. If they are going to have to dial the number all the time, she might as well use their phone. But we'll see. We don't have to do it all in one day.

I know this is going to seem bizarre, but some of you told me this would happen: Last night, I sort of missed her a little bit. I mean, it's certainly not boring with her around. And I felt a little deflated that this is done, exhausted by how quickly we made it happen, and sad about all of the circumstances leading to it-- her dementia and deterioration, and my father's looming death.

Heather and two of Matt's kids are coming tomorrow. It's just so much easier to get to Utah from Colorado than Missouri. I adore all of them, so I am excited. Heather lost her father a few years ago now. I still remember it like it was yesterday. She also used to work as a certified nurse's aide in a nursing home. I woke up in the middle of the night the other night and thought, "My dad is going to die while Heather is here." But maybe I just hope that she and her experience with the nursing home will be here to hold my hand physically and emotionally. Matt and I can do it-- but it's nice to have a guide.


  1. I just really feel for you and your family. At least things sound calmer and that has to be good. I don't know if you have ever seen this:

    One of the things she talks about is that when she had her stroke she felt all of her worries, anxieties, etc, wash away and she felt a sort of wholeness with the universe. I like this and I like to think this is one of the last experiences our bodies can provide us before we die. It makes thinking about death easier (for me anyway).


  2. You know I'm another non-believer who prays. You and your family in my prayers. <3

  3. Taking it day by day is all you can do. Love you, Jen. Take care, hon.