The Case of the Sudden Therapy

This past week, something strange happened. It started like this: Dad and I were just going into Mom's care center when a woman stopped on her way out and lit up. "OH, hi! How are you guys?? Leo, you look great!" She looked so familiar, but for a second I couldn't place her (I have trouble recognizing people out of context). Anyway, it turned out to be a lovely woman named Megan who was Dad's in-home occupational therapist when he first left rehab. She only worked with him for a few weeks before he was cleared to do outpatient therapy where we are now.

ANYWAY, Megan happened to be doing some fill-in work for the therapy team at Mom's care center. The weird thing was, she told us, "I just finished working with Teddie." HUH? Dad and I were so surprised, we just went with her conversation. She said she'd been helping Mom with her arms (Mom has no strength and can't really lift them) and then told us this would help Mom 'cause she'd heard Mom was getting a new wheelchair. (This is a long strange story, the upshot of which is that her current chair is falling apart, but the care center just keeps patching it. After about a month and a half of them dragging their feet about getting her a new one, Becky finally figured out they thought the chair was THEIRS and didn't want to spend the money. In reality, it's hers and Medicare will pay to replace it! Say it with me people: OY!)

We were quite surprised that even with the new wheelchair the care center was doing therapy again (in theory, they shouldn't because it's not covered anymore under insurance). Mom of course has no idea why it's happening, she just goes along with whatever they tell her. The funny thing is, it's not just OT, but they've actually been making an effort to help her work on walking and getting in and out of her special chair. Just out of the blue.

Dad and I suspect the real reason is that the care center wants to get Mom out as soon as they can. Not that they don't like her or anything, but because of her special needs, she's forcing them to spend money in ways they don't wanna and didn't expect (they figured she'd be out in a few weeks...last winter!). It's all about the $$$, isn't it.

Oh well. It's good for Mom! :)

Giving thanks

Yesterday Mom's care center had their Thanksgiving celebration. Everyone's families were invited at lunchtime to enjoy a holiday meal together. Since she has been there, we have really appreciated how hard the folks at her facility try to make life there as good as they can, especially for the holidays. They have an incredibly sweet recreational therapy team who just work their booties off constantly. And yesterday was their best event yet. The food was quite good, and they made every effort to accomodate our big group (four generations of women and our sweet patriarch!) by giving up the center's conference room. Becky put the icing on the cake by bringing in some soft music and autumnal-colored Hershey's Kisses to scatter around the table. (That last part was much appreciated by TCBitWtm, who took great delight in unwrapping -- and eating as many as Mommy would let her! -- "chocolaties.")

One of the ladies who works in the office at the care center came in to welcome us and told us that on such a day of gratitude, they feel themselves grateful that our family and others entrust our loved ones to their care. It is a difficult place for Mom to be, and certainly things do not always run smoothly, but we do appreciate that overall they are doing their best to not just give Mom what she needs, but care for her as a person. That is something for which we give thanks.

(Just as a side note, I did have a family picture from this event I was going to include, but I have always felt uncomfortable posting pictures in this public forum -- open to everyone on the planet -- of TCBitWtm's face. But I am always eager to show her off to friends and family, so if you ever want a glut of my family photos, please go to Facebook and friend me [if you don't know what I mean by that, please ask your kids or grandkids and they can explain and get you set up].)

...and a Mom update

Since I finally got my lazy butt to post an update on Dad's blog, I figured I'd give y'all the complete rundown on Mom, too.

About a month ago, Mom moved to the long-term care wing of her care center. She stopped receiving therapy in September because they had taken her as far as they could. At this point she is able to walk the few steps from her chair to the bathroom using her walker, but she still needs at least two aides to help her in and out of her chair and is still using a lift to get in and out of bed. The aides are occasionally able to work with her to practice walking down the hall, and they are trying to help her get stronger so she can get in and out of bed on her own. We hope that an assisted living facility is in her future, and possibly home, but that seems pretty far in the distance at this point.

In happier news, since Becky and I both have birthdays in October, Mom was able to get out a couple of times last month so we could have family dinners together for each occasion. And a couple of Sundays ago Mom was able to go to church! For Halloween, her care center invited residents' young family members to come trick-or-treating and Mom smiled so much passing out candy. It's good to see those moments when she's engaged.

We are trying to encourage Mom to seek out some mental health help, but she's pretty much eschewed that since summer. Please, please continue to pray that she will want to take advantage of every opportunity to get better.

In my tummy...

...is where this tiny tomato now resides. Yum

Tomayto/Tomahto

Those of you who know me well, know I have a notoriously black thumb. But I have wanted to grow some veggies (hope springs eternal!) for a couple of years now. I had given up on the notion until we were visiting family in California a few weeks ago and somehow Becky finagled a tomato plant from my Aunt Marian and Cousin Sue. And can you believe that after the trip back in the car, a little lack of water (hey, you can't get rid of a black thumb overnight), and a hail storm a couple of days ago, we are a couple of days away from yummy tomatoness?!?!?!

LOOK!

Thanks Aunt M. & Sue!! We'll tell you how it tastes!!

Enough about me, let's talk about you...what do you think of me?

I had such a lovely weekend, I just wanted to share.

Friday, I finally got to donate my hair! I've been waiting to do this for awhile, so it was a great relief. And I'm enjoying the short new 'do. (Yay for Locks of Love!)


Can you see my short hair?


Saturday, Joe and I spent the evening at the SLC Jazz Festival and had so much fun. We got to hear Debby Boone (yes, THAT Debby Boone) sing the songs of her MIL Rosemary Clooney. She did a wonderful job (although we could have done without her encore of "You Light Up My Life" -- when she first started, I thought, eh, maybe it's been long enough since I heard it, it might be okay...it wasn't...bleah). Anyway, the evening ended with a performance from The E Family (including Sheila E.) that was as exuberant and as sternum-crashingly percussive as one could wish. Yow.







Today, Joe and I were able to get away for some hiking and a lovely drive. I can actually feel my soul drinking up the satisfaction of this rare time together...I'm feeling good.

Improvements

Mom is really working hard. I confess, I'm impressed with her willingness to keep trying. The therapists have been throwing more obstacles in her way (literally) to get her to move more easily when walking, and she has been wheeling herself back to her room after every meal. Her biggest concern right now is her knee (not the one she ended up in the care center for, but her other knee which is not doing well from overcompensation). She has an appointment next Tuesday for a cortisone shot and we will see if that helps -- please pray.

It's just really great to be able to engage with her again. Dad and I went to visit her this evening and we chatted away (I showed her pictures from our CA trip) and she took such good care of Dad. So sweet.

I even got her to (sorta) smile for this:

Nearly perfect

On this wonderful (and rare!) relaxing day I got to...

...start the day meeting with my small group girls for breakfast. I honestly don't know if I would have made it through the past few months without these ladies.

...celebrate the second birthday of TCBinWtm. Yes, folks, my baby is TWO. Today she was not interested in candles, cake or presents -- she just wanted her pool! We tried to get her to look at her gifts, but she kept grabbing my hand and yanking me back to the water. "Come, play!"

...eat the best freakin' gelato in town at Bella Dolci (if you live here in Salt Lake, I'm begging you to go there and have either the pistachio or coconut almond...you will thank me).

...and veg on the couch with my now-home hubby and catch up on The Next Food Network Star (everyone needs a vice and this is ours).

A nearly perfect day.

Good news

Sometimes I feel like I have to wait until there's something inspiring or good to say before I can update blogs. Lately it seems as if we've been living in limbo (me personally, and especially where Mom is concerned). We have been getting good news in dribs and drabs with Mom. As many of you know, she ran out of Medicare last month and Becky has been working tirelessly with the folks at her care center to figure out how to continue caring for her there (she is not yet well enough to be at home) without bankrupting Dad. As of right now, it looks like the government is taking Dad's condition into consideration so he can keep everything, pay a reasonable amount for her room and board, and Medicare will still pay part of her therapy for while at least (she has been discharged from physical therapy because she wasn't making enough progress for them, but she's been doing great with occupational therapy and they will figure out ways to incorporate some PT stuff for her to do so she can continue to work on getting better). Please pray for her that she will continue to improve physically and be able to face what she needs to face emotionally.

In other good news, my 3+ veeeeeery long weeks without Joe are almost at an end. He'll be home in just a few hours and believe me, I CAN'T WAIT!!!

And in other good news (the good news being that I didn't fall or have a heart attack!) I got to spend a wonderful morning hiking today with my sweet Emmy whose birthday was yesterday. Happy birthday, Em! And to all of you, don't you wish you were here?:

Trying

Mom is trying: It's been weeks now since the last time we couldn't visit her. Every day she's doing what is required, sometimes more. We have had several meetings lately to talk about what it will take to get Mom out of the care center. Their insurance will run out for her this week and she's not ready yet to come home or even transition to an assisted living facility. Right now we're figuring out how much better she can get and in what time frame so we can make some provisions for her care. It's been really challenging -- for all of us -- but Mom is hanging in there and working hard.

I've been having a trying time: Mi vida loca has been in full swing. In the last month we've had so much company (not the least of which was my goofball nephew on leave from Iraq) and so much to do (with Dad, Mom, personally...) I have been like the proverbial chicken sans head. I'll confess I've been pretty low and not dealing with the challenges particularly well. But I'm hoping that it's just a sign that things are beginning to transition. Something needs to change soon -- for the whole family. It's time for the next phase of this journey.

On a break from making the world safe

for democracy.

"I want to do more."

My Mom rocks. Yesterday she was not able to meet her goals so we couldn't visit her. Today, she came roaring back with a vengeance. When we called the social worker today to ask if we could come, she said that not only did Mom accomplish enough of her goals for us to see her, but she accomplished all her goals in therapy today!! Then the social worker called us back just as we were getting ready to leave to tell us that she had talked to Mom's PT who told her that one of Mom's goals for today was to take four steps. She got that far and then said, "I want to do more" and took an additional step!! And then when we got there to see Mom, she told us that when she first went to therapy this morning, she wasn't able to meet her goals so she asked if she could go back to try again!

She told Dad, "I couldn't stand the thought of not being able to see you again today."

According to Mom's psychologist, she is doing "fantastic." Everyone is really noticing the difference and he said she is working hard with him to do all he asks in helping her get better. This man has been such a blessing. He's really giving so much of his time to truly invest in helping her. His attention seems to have been a catalyst for her. To be honest, I don't think I've felt this (cautiously) optimistic in a long time.

Very Good Things: Mom edition

After a rocky start to the week, Mom has met her goals for the past two days! Way to go, Mom! We are so proud of her. Not only that, but she seems more and more engaged, not only with us, but with the aides and nurses at her facility. She's joking with the aides and remembering their names (and introducing them to us!). Tonight she actually invited us to stay through dinner and didn't want us to go. The best part of all of this is she is having some real physical challenges in the bathroom arena (these things happen when she is super anxious) and she is still working hard at therapy. We are so thrilled, I can't even tell you.

Highlights from today: Mom stood with assistance for four minutes (magic number, I guess) and practiced transfers (moving from one seated place to another). She only slipped into negativity once while we were there and was very gracious when the nurse asked her to wait for something. As I mentioned above, she was joking and friendly with the aides who helped her, and then when we went down to the dining room she chatted a little with her table mates. The most encouraging sign to me happened after the aide got her in place at the table and left. Mom was cold and Dad asked if she wanted some hot chocolate. She mumbled something about wanting some, "if there was someone to get it for me." Then, instead of feeling sorry for herself, when she heard an aide at the next table offering to get drinks for a lady there, she lifted her head and called out, "Could we get two, please?" (One for her and one for Dad!)

Okay, I know that sounds strange maybe, but it is huge for Mom to be able to want something, acknowledge that want, and then assert herself appropriately to get it!

Very good things.

One matter of prayer, however. Although Mom is working hard and doing well, we are about halfway through the time insurance will allow for her to be in this facility. Our goal is to get Mom home functioning at (or better than) the level she was before. We've still got a long way to go and unless she really pours it on, we might have to make some tough decisions.

On the Mom seesaw

It's been a week since Mom's psychologist instituted his motivational plan for her. Overall, I would say that it's having some success, but of course there are ups and downs. After all, it is a big change for her.

She actually really impressed me by starting off strong. Last Tuesday (the first day) and Wednesday she met her goals and we were able to visit. Thursday was a wipeout, but she did it again Friday (for her to have a bad day and then come back the next day is huge!). No therapy over the weekend, and yesterday, though she didn't meet her goals (by now she has to do 85% of her therapy) her social worker said she tried really hard. Today was another wipeout.

From where she was coming, I'm frankly surprised she's doing as well as she has. I know it's tough for her. (Her psychologist is also working on changing around her medications so she's less somnolent which will be helpful.)

The best part for me is that working hard is lifting the fog she's been in just a little. Friday when Dad and I visited, she seemed more what I call her "real" self. She seemed more emotionally engaged and when she thought Dad and I were leaving almost pleaded with me, "I just want to spend a little more time with him." That's a first since she's been there. Usually she's very "flat" (if that makes sense) and whether we're there or not doesn't seem to matter much.

Funny, but though it doesn't seem like there's much to be positive about, I'm ecstatic that there is something to be positive about. Before it was like Mom was on a seesaw by herself, just sitting at the bottom. Now there's something on the other side so that even when she comes down, it's because she's been up.

Ode to Joe

My husband is really the best.
He helps Dad so that I can get rest.
He takes garbage out,
Lets it slide when I pout,
Listens while I get things off my chest.

He constantly watches my list
To keep up with how he can assist.
Though his worries turn east
And I can be a beast,
He is quick with a hug and a kiss.

He loves my dad as though he was his,
Loves my mom just as she is.
Makes me smile when I'm sad,
Tries hard not to get mad,
What a partner to have in this biz!

This is sillier than I intended,
But you all know he should be commended.
"An angel" Aunt Jim said,
(Which will go to his head!),
I'm just blessed to be thusly best-friended.

Immunity

Today, I'm feeling like I've won immunity on a reality tv show. Some how, some way I've been given a pass to the next round. But that's no guarantee I can keep going.

Joe got home safe last night. Yay! Thanks so much for all who were concerned and praying for him. It was a tough week for him and the family. We sure wish things didn't have to be this way, but the place his dad in is very nice, so we are happy about that at least. And I am happy to have him here again with me.

Yesterday's meeting with Mom and her psychologist went as well as could be expected (thanks for your prayers on that front, too). He very gently and kindly told her the expectations we had for her to get better and outlined a plan to motivate her to achieve them: each day, the psychologist will meet with her and go over her goals for physical/occupational therapy, he will try to talk through them with her in order to alleviate any fears (she's worried she will fall) and problem solve for any potential issues that may come up in therapy (if she is tired in the afternoon, perhaps morning would be a better time to work out). Mom must work her way up to doing at least 90% of what she is asked in therapy over the next few days (today she had to do 50%, tomorrow 65%, the next day 75%, the next day 90% and stay there). In order to motivate her, family visits will be contingent upon her meeting the percentage required.

I'm happy to report that today, Mom was able to meet 50% of her goals. Dad was so thrilled, we stopped and picked up roses on the way to see her! Mom herself seemed a little less negative while we were there. Small steps, but we are cautiously optimistic.

KaBob

I am sad about Mom. Sometimes I'm angry, sometimes I'm frustrated, but tonight I'm just sad. As I was helping Dad to bed he sighed. I said, "What?" but I knew why. He said, "It's nothing you can help me with." Finally, he said, "When you love someone for so many years, it's hard to think they won't do what you want them to." It's times like that I don't know who to feel sorrier for: me (my first impulse!) because dang it, a girl wants her mommy sometimes; Dad because he needs her so much right now and she is not there for him; or Mom because this can't be the way she wants her life to be and deep down she must be so sad and scared. (For those of you who don't know and/or haven't guessed, Mom is really in the care center not because there's something wrong with her knee [in which she is suffering extreme arthritis pain and which is the ostensible reason she is there], but because there is something wrong inside her that has given up and feels she cannot do anything for herself.)

When Dad said what he did, I thought about earlier this afternoon. I was playing with TCBitW tm and she kept reaching out for my hand (and grabbing it when I didn't hold hers fast enough), saying, "KaBob! (come on)," and dragging me around the house. If you've ever been grabbed by a toddler, you know they are somehow superstrong and tenacious and no matter how big you are, you almost can't get free (not that you want to!). I wish there was a way to grab Mom's hand and tell her, "KaBob!" and drag her free once and for all of the things that hold her down, hold her prisoner. I wish I could hold on to her with that superstrong and tenacious grip.

Please pray for our meeting with Mom and her psychologist tomorrow. We need tools to deal with all of this and a better understanding of what is going on with her. Please pray that she would not be defensive, but be willing to seek the help she needs. And that we (okay, I) would bring compassion and openness to the table.

The kid's a genius

The Cutest Baby in the Worldtm reads the newspaper.

Why I haven't called you back

For awhile now, I've been planning to start this second blog for those of you interested in keeping up a little bit more with my mom and me and how things are going. I generally try to keep Dad's blog upbeat and informative and mostly about him. But I thought maybe some of you might want to know what's going on behind the scenes.

So, our first episode is Why I Haven't Called You Back, in which I give you a little glimpse into my life so you know that I'm not ignoring you, I'm just like a shark moving through my day: if I stop, I'll die. (I'm not trolling for sympathy, though I wouldn't turn it down ;) , but just welcoming you into my little world.)

Let's take today for example. Fridays are our "day off," which means I try not to schedule anything for Dad. So today, now that he's (thankfully) sleeping, we get to "sleep in." At 8:22, the phone rings, waking us both up. It's the clinic managing his coumadin (once a week he has his blood tested to make sure his blood is thin enough to prevent clots, but not so thin that if I nick him while giving him a shave we have Psycho flashbacks). This is a new clinic because now we're having the VA do it instead of IHC. So, I'm on the phone for half an hour rehashing his story, his medications, his recent blood draw history, etc. and scheduling our next blood draw (this means we go to our nearest hospital and have their "vampires" take a sample). After the phone call, I explain what I'm doing to Dad, tell him I'll let him sleep a little longer, and then wander off to see what's on my list for today (so much for sleeping in).

Becky lent me a big dry-erase board I have hanging in the kitchen to keep track of Dad's appointments and the to-do list, everything color-coded (which means if you stick around long enough I'll assign you a color and start writing down things for you to do).

There are four things on my to-do list, but they're just the things I'll forget if I don't write them down. The real list is in my head. So I spend the next half an hour opening the blinds, putting out the flag, bringing in the paper, cutting up a butternut squash that's been hanging out in the fruit basket so long I need to cook it or name it. The phone rings again at 9 (the coumadin clinic with a follow-up) and now Dad's done trying to sleep. We chat for a minute while he wakes up. My phone rings and it's Joe (see Dad's blog for details on why he's out of town). I talk to him, dust Dad's bedroom, and help Dad to the bathroom (yes, all at the same time).

After talking to Joe, I give Dad his pills, make him breakfast, cook the butternut squash for later (nothing like the smell of Mrs. Dash Garlic and Herb mingling with waffles!), read Dad the headlines, help him eat, do laundry, clean out the fridge and work on a grocery list, and finish dusting the house. (No, not all at the same time, although there is lots of multi-tasking happening.) I also begin making a list on the white board (see above) for my niece to do when she is "hanging out" with Dad later (hanging out seems much nicer than "Dad-sitting"). I quickly vacuum and clean Dad's bathroom.

Now it is 11:30 and I'm freaking out. My niece is coming over between 12 and 12:30 so I can go have lunch with my friend and I still have to give my Dad a shower and shave. Dad is sleeping in front of headline news so I have to gently wake him from the stupor of the drugs that help him sleep at night (yay). So, I get Dad into the shower. This is a procedure that involves five towels; me trying to keep a naked, wet man on blood-thinning medication warm while providing a modicum of privacy; and trying not to slip and fall OR let him slip and fall. Yes, this is every bit as fun as it sounds.

I get Dad showered, I get him dressed. My niece shows up while I am getting Dad shaved and her daughter, The Cutest Baby in the World tm, watches in fascination as I cover Great-Grandpa's face in foam. I shave, I explain what needs to be done, I play with TCBitWtm (she talks a ton, but the only words you can really understand are, "Are you okay?"...does that give you a glimpse into what kind of alarmist freak family she got plopped down into?).

By the time I get into the shower (technically I get soaked showering Dad, but I'm also sweating [ya gotta keep it at 80 degrees while you're dealing with a naked, wet man on blood-thinning medication]), it is 12:30 and I should be leaving to meet my sweet (and thankfully very gracious) friend for lunch. I manage to get out of the house at 12:55 (I did have to stop and wave and blow kisses about a thousand times to TCBitWtm).

So, while I make the half-hour drive downtown, I (please forgive me for this), call my niece to give me some phone numbers so I can a) call Dad's old coumadin clinic to let them know the VA is handling it, b) try to make an appointment with a new orthopedist for Dad. Then, I call Becky to make arrangements for the stuff she's doing with Dad this weekend, kvetch about our situation, make her laugh at me by tossing off obscure (to her) references to Douglas Adams, etc. and arrive to pick up my (did I mention gracious) lunch date.

After a brief hour of catching up (and eating a bowl made out of bread the size of my head...with soup [I realized when we got to the restaurant I hadn't eaten breakfast...funny, 'cause when I went to bed last night, I realized I hadn't eaten dinner, just four of the cookies I was baking...you wouldn't think it to look at me, but I need to add "eat" to my to-do list!]), I drop off my friend. On the way back home, I stop to take some of those cookies I was making last night to friends who just lost their mom/MIL/grandmother. I wanted to stay longer ("Hihowareyoudoing[hug]sorryIcan'tstayherearesomecookiesprayingforyoubye" just didn't seem to convey my heartfelt condolences, but I know my friends understand) but I had to get home so my niece could take TCBitWtm home for a nap.

So, I get home, take Dad to the bathroom, wrap things up with my niece, give hugs to TCBitWtm, finish up some of Mom's laundry to take to her, give Dad some pills and get him ready to go. And we go. Our visit with my mom is not stellar. I love my mother. Most of you reading this know that. But we are coming to understand more about some of the mental issues she is truly dealing with (she is seeing a psychologist with whom we are scheduled to have a family meeting next Monday). Basically, as many of you know, my mom has just abdicated all personal responsibility for herself and simply cannot make the connection that her actions or lack thereof are what is driving her situation. She "tries" to do PT, but she is unwilling (for the moment) to work through the pain that sent her on this journey in the first place. (Please pray about this, that she will have ears to hear her psychologist and that she would accept the help God wants to offer to get her better.) Anyhoo, between that and her medications (for anxiety) conversations with her are disconcerting at best. I try and avoid them myself (yes, I'm a bad person) and simply let her and Dad talk.

So, after our visit, Dad and I head home. I make dinner, I do more laundry, I feed Dad dinner and then eat mine while he falls asleep in front of the Jazz game. I make some dessert, I clean up and put things away, I update Dad's blog (and start this one), I talk to Joe. Dad wakes up at the end of the Jazz game and I give him his dessert and some pills. He's tired (of course!) so I help him to the bathroom, help him brush his teeth, put on the medications he has in transdermal patch form, put out clothes for tomorrow, answer his questions about tomorrow, put on a relaxation CD, go out to check on laundry, go back and forth for a few things for Dad (sip of water, CD sound's too low, CD is too loud), update the to-do list, research some things about Dad's medication online...

...and finish this blog. It is 11:17 p.m. and I feel like I got a bonus hour tonight 'cause Dad went to bed early! Usually at this time of night, I've just closed his door and am starting on the laundry/dishes/list updating. I guess this really is a day off! (Yes, that was a wee bit of sarcasm.)

Just so you know, yeah, I'm tired, but I love doing this stuff. (And honestly, it's much better when Joe is here to take up some slack, and Beck gives me tons of time off over the weekend when she's done with her work week and finally gets to spend her time with Dad.) "After all, it's nice to be needed," says mousy Pauline in Anne of Avonlea. And so it is.