At the Foot of the Stairs

I am coming undone. During the past month, I've experienced ugly family blowups, orchestrated the fastest cross-country move on the planet, sent my husband off for a five-week-dream-come-true trip to the Middle East, and for just one night got out of town last week to Iowa to see some friends. For the past three days (and the past ten, with the perfect vision of hindsight), my dad has begun a rapid decline. They have been here for, what, a month? So of course, I'm second-guessing everything. If we were still in Utah, then I don't know if I would have my kids with me. Sam is working on campus and taking a college class. I was coming unglued already in Utah-- but if I had known that he was going to start declining this fast, I would have probably just stuck it out there. All indications were that we probably had months . Oh, melanoma, you trickster. You fooled us all. So, my mom and I, my three kids, and a couple of friends are holding down the fort. I looked at the clean...

Things have been very stressful and intense. I am deliberately not writing about it, because I need time and space from it. As I have said earlier about blogging: It happens in real time, so sometimes you have to take a breath and process and think and rest before you write about things. And sometimes you have to not write about them at all. But the movers are gone, Dereck is here in Utah, my brother is in Colorado, and Dereck and I are flying with my parents back to Missouri on Tuesday. This is a thing that is happening. We'll take our time, stay in a hotel that Tuesday night and pray the movers make it there before we do. Yesterday we bought their cemetery plots, and here are some pictures . Pretend they're worth thousands of words.

Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude -- from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able -- either physically or financially. Caregivers who are "burned out" may experience fatigue, stress, anxiety, and depression. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones. What Are the Symptoms of Caregiver Burnout? The symptoms of caregiver burnout are similar to the symptoms of stress and depression. They include: Withdrawal from friends, family, and other loved ones. Loss of interest in activities previously enjoyed. Feeling blue, irritable, hopeless, and helpless. Changes in appetite, weight, or both. Changes in sleep patterns. Getting sick more often. Feelings of wanting to hurt yourself or the...

Things started to fall apart during my last week in Utah. By things, I mean me. We had some very very good news: My father continues to do amazingly well. It became clear during my last week in Utah that my father will continue to thrive, but that also meant that things had to change. So, we set in motion the grinding work of moving both of my parents to Missouri. That work begins with convincing the parents that they need to do this. That was long, that was ugly, and after I got home from Utah, I slept for the first week. This has been my second week home, and I still feel tender, like someone has been holding me by the hair on my head, and my roots are aching. I don't feel like I can really put myself back into this ponytail. And yet. I also found my parents a place to live, and so tonight, I board the train once more for Utah. My mother is moving out of the nursing home tomorrow. Matt is in Utah now. I am going there to help him navigate both parents as well as to haul ass, ...

Before my dad was pronounced terminally ill, I saw him a few times a year for short trips. We spoke on the phone every week. He would call me on Friday mornings while my mother was at her hair appointment. So, I knew that I would miss him, miss those interactions. Now, I live with him, and he's my constant companion. So, before, when he died, I was going to miss an hour-long phone conversation, being able to pick up the phone and call him freely, and short visits. Now what the hell am I going to do when he dies? _____________________________________________________________________________________ Last night, Matt and I talked on the phone for awhile about our options. Basically, we are trying to figure out the most ethical way to opt out of this. I am wondering who exactly we are worry about yelling at us for leaving, besides our parents and ourselves. I could put my mother into a nursing home, but I could not walk away, and now for a variety of reasons, she is coming back ho...

My dad just told me that his 90-day hospice evaluation is coming up. They will evaluate whether or not he still needs to be on hospice. The nurse thinks they will keep him on. "But if they don't, then it will just be your mother and I here." "WUT." "Well, I'm not on hospice, you and Matt don't need to be here." "Why would they take you off hospice?" "Because I'm doing so well." "Well, I don't think that means you can take care of Mom by yourself." "Why not? She doesn't bother me the way she bothers you and Matt." "Oh, I don't think that's a good idea." My heart is pounding hard. What? What? They could take him off hospice? Which means, what, what have we been doing all this time? Why did we put our mother in a home? You mean after all this, we might be all the way back at square one? Which means that not only will this all have been for nothing (well, ar...

It's always a little harder for me after I've been here for two weeks already. That seems to be when the homesickness starts to kick in. I had a bad night Monday night, and then Tuesday morning, I was a mess. I realized that the housekeepers (yes, we have housekeepers. I know it's ridiculous, but would you want to put two people out of a job just because you can clean the house yourself, when you don't even want to?) had put one of my vibrams into a box of stuff that is still in the bedroom waiting to be sorted. I keep saying to it, "You've got to get yourself sorted," but it doesn't comply. One of my vibrams was in the box. I pawed through some kind of slippery drape-like fabric, pairs of socks, plastic sock clips to keep them from getting separated in the wash, address books, pens, and soon I was dumping it all over the floor. No vibram. So, I put everything back, piece by piece. No shoe. I dumped it out again. By this time, I was sitting on th...

He doesn't like how much time i spend on the computer, though if I don't have that stimulation, I get depressed. And it doesn't really seem to make much difference whether I'm on the computer or not as far as how much we talk. My brother and I have been trying to decide what to do about our mother next, and decided today to bring her home and enroll her in daycare (I sound like I am adopting a baby). So my dad and I bickered about that. He is worried that it will be the same as it was before she went in. My unce Burke is worried about that. But at that time, my father's death was imminent, it was all so new and the grief so fresh and the stress so great that we just had to get her out of our hair so we could breathe and think for awhile. I am not looking forward to having her back. But short-term, it seems cruel and unnecessary to put her in just another home that she will feel lonely and abandoned in. I am having some major guilt lately about having done this...

My dad on the phone to his friend Bob: "She's not happy there. Yeah, well, they think they can take care of her here. We'll see. I'll love having her here-- it'll at least be someone to talk to."

It's not like she didn't warn me. She told me she couldn't bear to move again. Yet, every single day she would say, "I hate this place. I see so many injustices here all the time," and then so would begin the litany of complaints. I didn't imagine that, right? Today, Burke brought her down to The Charleston. She wrinkled her nose the second she walked in. "I don't like this place," she told me. "Well," I said cheerily, "let's just look around!" "It's not as nice as the place I'm in now." "Well, when we are done here, I will show you your other option, and then maybe you'll appreciate how nice this place is." The cute girl, Michelle, who showed us around yesterday came from home (she still lives with her parents) to give us a tour. I introduced my mother. "Michelle, this is my mother, Pat." My mother said, "I don't like this place very much." We started...

... my mother's nursing home for continuing to provide me with such good material . Yesterday morning, Matt and I talked again. We decided not to decide anything until Monday, because we need time to think. I made a list of the pros and cons of bringing Mom home versus finding another nursing home. Then, when I was just sick to death of worrying about it, my dad said, "How'd you like to go get a buffalo sandwich?" "I'd love to. Let me take a quick shower." At first, I thought he meant buffalo as in buffalo wings. No, he meant buffalo as in herd, not New York. With him directing me, I drove up Provo Canyon to Heber City, Utah, where my maternal grandparents are buried. There is a really, really, really great place to eat there called Spin Cafe . (Private to Grand Marais people: Think The Wild Onion ). My dad got a buffalo burger, but I got a grilled cheese sandwich with pulled pork, tomato, and avacado. It was fantastic. Then, we both got a small ser...

Last night I told my brother that we were bringing Mom home and we were going to take care of her here and enroll her in the day care down the road. There was a silence. "Um, I think that is something that should have been discussed with me." I went red in the face even though I was on the phone. I had already told Burke to bring her home today. I had told my dad we were doing this. But Matt was right: He needs to be an intricate part of the conversation. He said, "What happened to putting her in a nursing home in Provo?" I called Burke and told him to hold off. Burke, trooper that he is, immediately offered to help me find a place nearer to where I am for her. I am not sorry that I gave notice at Sunrise. I may have even mentioned something yesterday about making sure that everybody we know hears about how shoddy that place is. I may have mentioned reviewing them on the Internet, too. Apparently, word of mouth is important. The next and trickiest challeng...

I just figured out one of the things that bothered me about today. I've mentioned cleaning her sleep machine. I have mentioned helping her with rotating her mattress and asked about the whirlpool. They were so shocked today when I was angry, and just jumping through hoops to accomodate me-- they went in and apologized to my mother and asked about helping her clean her apnea machine for the first time in a month. You shouldn't have to get angry to get this kind of treatment. I don't think it's too much to ask for this to be expected and granted . You shouldn't kick a dog just because he can't tell and his owner hasn't yelled at you yet.

So, how long did I go before I cracked up? It's been since before Christmas, so not too bad of a run, considering the strain. Today, I gave notice at the nursing home. After yelling. A lot. Some of you have been privy to my temper, and for those of you who haven't, let me tell you: It's a real treat. The director was out of his office when I started raising hell to the woman I met with on Tuesday night and told her that I was fed up, that nobody helped my mother with things like cleaning her apnea machine, rotating her mattress, they won't fill up their little hot tub for her because it's "inconvenient" and she is repeatedly told, "Ask your family." Well, if the family has to do everything for her, because they won't even provide TOILET PAPER, then I'd like to know what we are paying $4400 a month for. A space so small that a college student would rightfully object? So they can say no to her fifty times a day when she asks for meds? T...

My mother is the Holden Caulfield of nursing homes. She seems almost determined to get kicked out. Last night's conversation omitted a little detail that was being considered for my mother: A room that had a door she could close, but which she would still be sharing with another resident. For the low, low price of $10 more per day. That is $240 more than we had to pay per month just to move her downstairs. And how long has it been since they wanted to move her and increase her rates? Not long enough. Today I told her, "You go ahead and get yourself kicked out of every nursing home we put you in, and I'll make sure that every subsequent one is cheaper and shittier." So, I called Matt and we talked about it. I am calling tomorrow to tender our 30 days notice. I have already been looking for nursing homes in Provo or Orem. For one thing, even having her just 40 minutes away is a huge pain in the ass. today, I had to go and get her for an appointment with her pain doc...

I have a headache, so this might be brief. I think my dad and I were both a little down today. There was no specific cause for it. Just the particular dust particles in our air today or something. Speaking of which, my brother asked if maybe my father and I have both been extremely tired since Saturday because the air quality is bad here sometimes. I haven't seen anything on the news about it, but it's possible. I don't really think it's related to my father's cancer, though, because we have both been napping during the day AND going to bed earlier and sleeping later. So maybe he wasn't down today and I am just projecting. Anyway. I fell for it again. My mother called this morning and said that she is having so much pain that she can't do anything. She has no quality of life. She sounded genuinely distressed and near tears. So, I got her into her pain doctor tomorrow, a week ahead of schedule. Then I go up to the nursing home at 5pm for a meeting with ...