Update on mom

We had our care conference at Mom's nursing facility on Friday morning. The care conference is when key staff members meet with you a few weeks after the patient arrives to tell you how she's doing, what evaluations they've made, and what their plan is going forwards.

We met with the head of nursing, the CNA who is mom's main caregiver, the physical therapist, the occupational therapist, and the social worker.

The therapists were the most interesting. On the physical therapy side, she's doing really well - walking 200 yards unaided most of the time, although needing assistance to get up and down out of her chair and sometimes needing assistance bearing about 25% of her weight. For hip surgery, they said this is really good. What she's having trouble with (and I witnessed this the other day) is sequencing - it's hard for her to remember the steps to get up out of her chair or back into it, things that come naturally to most of us.

The occupational therapist said she's scored pretty low on a couple of evaluative tests and rates as having significant impairment and no real judgment about things like safety issues. Were she to come home, the OT recommended that they have 24/7 nursing care in the house with them.

It looks like her skilled nursing rehab period is going to come to an end either this Friday or next Friday, at which point Dad will have 48 hours to either pick her up, have her moved to another living arrangement like an adult family home, or sign the papers for her to become a fulltime resident.

It's pretty certainly going to be option three; Dad seems to have made up his mind and is gathering the paperwork now. Having her come home would be temporary at best, having a nurse live with them in their tiny house sounds really daunting, and the process of getting her back into a facility like this when she needed it could be very traumatic. Adult family homes vary really wildly in quality and aren't monitored closely, so it can be hard to know what you're getting and sometimes difficult to find a good fit. If she weren't doing well in this setting we'd look into that as an alternative, but she seems to be enjoying living there so far.

The staff at Ida Culver said she seems to be generally content there, that she's "pleasantly confused" most of the time and is easy to redirect when she gets agitated. I think she might be giving her CNA some grief now and then, because she's the one who has to help her do things she doesn't think she needs help with, like get dressed and get to the bathroom, but otherwise people seem to really like her and think she's doing well.

My Dad is having a tough time, I think. We're still trying to find a support group (the first one we tried to attend had folded) and are going to try another one this coming Monday. There's a really active local branch of the Alzheimer's Association that runs meetings all over town, so eventually we'll find one that's the right fit.

New Fabric, Sofie Style

Although Sofie agrees with me that the arrival of new fabric in the mail is something to be celebrated, we differ slightly on what form the celebration should take.

Her version involves fashioning a babushka and skirt from the pieces and wearing them for the remainder of the evening.

And on the lighter side...

Here's something crafty I wanted to share. Sold in about two minutes yesterday in the shop and darn if I didn't use every scrap of owl fabric I had and am unable to make another one.

And of course, the fabric is out of print!!

Oh well. I kind of wish I had one for myself though. Isn't he cute?

News and tidbits

Sofie is on a hitting phase; could this be the start of the famed two-and-a-half mess? She just wants to smack me in the face all the time, hard. It's getting old. And when you tell her to apologize, she laughs. Perhaps it's time for time outs to begin...

She's probably mad because life has been no fun at all lately. She and I have both been sick as a dog (well, as two dogs) since last Friday and the germs are still lingering. It's got to be hard to be a toddler with a bad cold when you can't really blow your nose. Can you imagine? It must hurt.

Fun is on the horizon though - we just signed up for Messy Class at a local school, which sounds like a big free for all with pudding and finger paint. Woo hoo! This starts next Friday and will undoubtedly offer many fun photographic opportunities.

***

Mom continues to do pretty well at the cognitive care center; she's not as resistant to being there as we thought. She's about evenly split between days when she's pleasant and cogent enough to have a conversation with and days when she's confused and semi-incoherent; she certainly seems to be having more incoherent days living there than she did at home, which is a little disheartening but not entirely unexpected.

I guess a lot of people with Alzheimer's tend to decline more noticeably once they're placed in long-term care, either because they stop trying to pretend so hard that everything is fine or because they find it depressing and tiring and that doesn't help the cognitive issues.

She also doesn't seem to be recovering her ability to walk very well. I saw her physical therapy session yesterday and was really surprised to see how poorly that was going. The therapist said it was an unusually bad day for her and that she'd walked better on Monday, so maybe the physical abilities vary like the cognitive side too. I don't know. I just hope she's able to walk again eventually. The surgeon thought she'd be able to within a few weeks.

We have a care conference on Friday with the nurses and therapists there, where we'll learn about the evaluations they've done on her and their recommendations for her ongoing care. We're hoping to get a lot more information about her condition, what stage she's in, whether medication would help or not, etc. I'll post more about that this weekend.

Some visual distractions

Today we're just going to go with some visual distractions.

First of all, this pic to the left has been amusing me lately. This is me, at just about the exact same age Sofie is now, meticulously organizing my own committee on a pile of blocks, just exactly like she does now.

We may not look alike, but we seem to share some personality traits.


Here's a recent pic of Sofie for comparison, although you may have already seen these on the blog - the second one in particular shares the same design aesthetic, don't you think?

Also - although I probably will eventually split the blog, I have to admit that I just don't have the bandwidth to manage two blogs right now, so I'll temporarily continue posting some of my sewing/crafting pics here. And today I just want to share a couple of pics of the paltry few new things I've managed to create for the store since this whole crisis with Mom started - almost two weeks ago now.

So just because they're pretty, here are a few recent things I made:

Oilily reprint fabric from Holland - isn't this gorgeous? One thing I've discovered from having the store is how much I'm drawn to bright colors when left to my own devices. I gravitate to super-drenched, color-rich fabrics every time when I'm not specifically trying to pick out certain colors for a quilt.

Fun learning these things about yourself.

This is also pretty much the only thing I've made in the last week - this and another one like it you can see here.

This is from a while ago, but did I ever share my Cake-o-Saurus? This was a custom order for someone Brett works with - he wanted a dinosaur holding a cupcake, and although I wasn't sure how to do it at first I really loved how this turned out. It sold a while ago, so this is sheerly show and tell.

And the coffee sleeves are selling well - in fact I need to make a bunch more. Here's one of my more favorite ones recently - robots.

Boy have I been neglecting the old shop lately. Pretty soon I'm going to have to get back into it a lot more fully if I want to keep it going.

That's it for today! I hope you enjoyed seeing some of my recent works...

A Little Bit Better

The last two days have been a little better - little glimmers of normal life shining through. Visiting Mom has gone a bit better now that we're getting better at timing it so that our leaving at the end of a visit is brought about by something happening there - for example, they come to take her away to lunch, or she's off to physical therapy, and we leave after she's gone. She gets less upset to see us go when something interesting is happening on her end, which makes the whole process way easier.

She's also been in a pretty good mood the last two days, which makes a huge difference in how everyone feels the rest of the day. She's been more cogent (after her one very bad day) and generally pleased with life there again. Dad's visiting this afternoon and I go tomorrow morning again, then we're all going up on Saturday.

Now that we're beginning to alternate visiting days and the immediate crisis mode has passed, life is starting to return to a bit of normalcy again. Yesterday was the first day in a while when I didn't feel horrible all day long. We visited with a friend in the morning, Sofie got to go to the park, and Dad and I got out to enjoy some sunshine and do some needed shopping. It felt so good just to be calm for a while.

***

On other fronts, wanted to share a funny Sofie story. We went out for sushi last night, something she's always in favor of because she likes the big bowls of rice and the teriyaki chicken you can get. She's never had actual sushi before, though, and we've never seen any sign that she wants any.

So last night we sat at the sushi restaurant and, despite her being tired and somewhat fussy, she held it together and had a good meal of her usual - rice, chicken, veggies and fruit from home. We were there almost 45 minutes and were just starting to pack up and think about leaving when Sofie looked at the kitchen and said very sadly "My sushi will be here in just a minute."

Awww... poor kid. All this time she was patiently and quietly waiting, hoping for someone to bring HER some fish. We gave her some of what Brett had left - some cold salmon and some mackerel - and sure enough, she chowed down on it and asked for more.

Next time, I guess, she'll get her own order of a couple of pieces of fish. Especially after that herculean show of toddler patience. Thank goodness she said something, as she probably would have been heartbroken if we'd just left before her food "arrived."

To stay or go?

Once again this blog seems to be entering an identity crisis. What is this, my fifth? Growing Notes began as a gardening blog and lived about a year in that mode, then became more about general life and observations, then became all about parenting, then I spent a year or so working really hard to try to get it a following as a quilting blog, then I spent most of the last four or five months talking about etsy and helping to publicize and share my crafty undertakings, and now?

Now all I want to talk about is Alzheimer's.

It feels intrusive in a way, wrong to blog about it at all; my mother is a deeply private person and would hate to know I'm talking about anything to do with her. But honestly, I don't know how I'm going to get through this if I don't. As with all things in my life, the act of putting something into words is central to how I cope. Writing through something is how I learn to understand my feelings, and sharing them with others helps too.

There are some wonderful blogs out there about people coping with Alzheimers, some fascinating ones written by the patients themselves early in the process, most written by their family members. I've already learned a great deal by reading some of them; being part of that conversation appeals to me. I could help someone else, and I could make connections that will help me.

The thought that occurs to me, though, is that maybe I should split that off into a separate blog? Can one blog really hold all these disparate subjects in any coherent way? Having tidy little compartments for things has its appeal, everything nicely in its place.

But then again, maybe I should just accept that this blog is about LIFE. Not just about crafting or parenting or gardens or one thing or another, but just the whole big sordid jumble, and leave it at that.

What do you think? Separate out the posts about dealing with my mother's illness into a focused side blog, or keep everything in one place?

*********

And today's observation on Alzheimers: we're learning that every day is entirely different and it's a good idea to have no expectations of what you're going to find. In the reading I've been doing it sounds like a person's cognitive skills and emotional state can vary wildly from one day to the next, and that certainly seems to be true for Mom. I expected the emotions to vary but the cognitive differences are more of a surprise.

This weekend, when I blogged about visiting Mom on Sunday and how delighted she was both to see us and with the place she's staying, I rather foolishly hoped that that might be the case the next day too. It wasn't. Dad went yesterday and faced a much more difficult scenario, Mom deeply upset and not wanting him to leave her there at the end of what was an extremely long visit. I went today for a shorter visit with Sofie (who did very well, the little trooper that she is) and found Mom calm and happy but having a terrible day cognitively, due to a really bad night's sleep. She was having a lot of trouble doing anything for herself today, unable to take a pill when it was placed in her hand or do much to help with her morning routine.

Dad goes tomorrow, I go Friday, and we both go Saturday. I bet each day will continue to be radically different from the day before. I've read that the adjustment period can take up to six or eight weeks before they really settle into their new home and feel more comfortable; that may the case here too.

It's a huge learning curve, but we're starting to figure some things out. Tomorrow we're going to an Alzheimer's caregivers support group run by the local Alzheimer's agency to start getting some better advice on how to handle what must be really common issues people face when their family members start to decline.

Hopefully that will help. I think it will really be good for Dad if we can find him something like that to go to regularly, to help him deal with the guilt and the sadness about not taking care of Mom at home any longer. It's a terrible decision to have to make and I feel so bad for him.

Valentines Wishes

Observed yesterday at the cognitive care unit.

During lunchtime, when about half of the ward residents were sitting around out in the common area near the fireplace, an older gentleman in a wheelchair laboriously made his way over to the nurse in the corner and told her he needed help writing a Valentines card.

"For me?" the nurse, a cute young thing, asked, and they both laughed. "Just kidding!"

She worked with him for a while on what he wanted to say and a few minutes later I noticed her sitting at the table next to us with a set of greeting cards and a pencil-written note that she was copying in ink onto each of the cards. Because of the way she was sitting, I could see the message clearly.

"Lilly,

I'm sorry. I love you.

H"

This little glimpse just broke my heart. I wonder, is Lilly even alive anymore? Mr. H, being an alzheimers patient, might not know if she isn't. Was he apologizing for his Alzheimers, for having to leave her, for not being with her this valentines day?

I can't decide if the dominant message here is that aging (and Alzheimers) can be very cruel or that love is enduring and very, very sweet.

Either way, it just kills me.

Changes

Yesterday, my father and I moved my mother into a nursing home.

It's an understatement to say that it's been a difficult few days. My mother broke her hip last week and had surgery, and her surgeon recommended she spend a few weeks in a skilled nursing center for rehabilitation and therapy.

We took advantage of her hospitalization to get her evaluated for her ongoing memory issues and have confirmed that she has fairly advanced Alzheimers. Because of this, chances are good that she'll stay on in the cognitive care unit at the nursing center as a full-time resident when her therapy comes to an end.

This has been agonizingly hard on all of us. My Dad is contemplating living alone for the first time in forty four years. We've both been running around nearly nonstop for the last five days dealing with hospital beaurocracy and figuring out where to get her placed for her skilled nursing stay and trying to sort out the overwhelming list of issues that suddenly needed a very quick solution.

Most important was finding someplace for her to go on her release from the hospital, at least for the short term, so we quickly toured a number of places, some of them truly horrifying, some mildly depressing, and one that was really nice. Luckily, the nice one had a bed in the an Alzheimer's ward, and we were able to get her moved there. Even better is that it's an easy ten minute drive up the road from our neighborhood.

Mom moved into the cognitive care unit on Saturday, and actually, she seems to like it there. The hospital made her very unhappy, with the numerous people always coming in and out and the lack of privacy and the awful gowns and nothing to do, but the cognitive care ward is pretty and homey and small - only 22 residents and about eight or so staffers most times of day. The rooms are lovely and the staff is so attentive and caring.

They take her to their "sunshine club" every morning for two hours of exercise and music and crafts, which she's enjoying, and they have activities ranging from scenic drives to hand massages to brownie troop visits. There's even a resident cat, a big tuxedo cat named Ellie, who wandered into Mom's room immediately on her arrival and plopped down on her bed for a long visit. The nurses said she greets every new resident this way. They seem to have taken a shine to each other.

Dad and I spent most of the day there yesterday, then came back today for a shorter visit at lunch time, since her mornings are pretty full with scheduled activities. When we arrived, she was delighted to see us and couldn't have been happier. We spent two hours sitting in the common area with her and she told us story after story of the many things she's seen or imagined since she's been there, and we left feeling somewhat relieved that she's not unhappy with her situation. She talked about her room there as "her apartment," didn't seem to remember the house she hadn't returned to, and told us we should get ourselves apartments there too because the food is so delicious.

I'm cautiously hopeful that maybe she's going to settle in okay. I really hope so.

In a few days, I'm going to take Sofie to visit. She knows grandma has been sick, and visited her in the hospital the first day she was there, but has been puzzled since about where grandma is, why grandpa is alone when he comes over for dinner, and why Mommy is never home right now.

I've started to try to explain to her how grandma is going to be fine but will be living with the doctors for a while. I hope Sofie is comfortable with the nursing home and doesn't mind visiting - although the presence of a friendly cat and a huge fish tank will undoubtedly help on that front. If she's not scared by it, I'd like to take her to visit a lot, since she adores her grandma and really misses her.

It's strange and disconcerting to suddenly find myself at this phase of my life. I'm going to be forty in a few weeks, my parents are in their eighties, my mom is leaving us a little bit at a time, and my dad is alone. But I have a wonderful little family who I love and great friends who care about us so much, and I'm so grateful mom and dad are here so that I can help and so that Dad doesn't have to deal with making these decisions all alone.

And with that, I'm going to stop. Hoping for a quieter week and to start the process of figuring out how this all works in the longer run. Wish me well.

Elsewhere, in toddlerhood...

Sofie still plays with The Committee, yes, but she's also taken to playing quite heavily with the 26+ little plastic animals that came with her alphabet zoo. In the past few days she keeps setting up an elaborate tableau on the plant stand in our dining room and calling it a tea party - but it involves several tall silver mountains with cups on top of them and twenty-odd little animals milling around in general confusion at the base of them.





Only the tiger is smart enough to scale to the heights and reach the cup. "You doing a good job!" Sofie tells him. "You drink tea!"





Personally, I think he seems to be the Indiana Jones of the bunch. He just needs a fedora and a whip.

Reading in the car

Sofie is definitely showing herself to be a chip off the old gene pool, at least when it comes to verbal ability and a love of books. My favorite sight of the last week was on Saturday morning. We'd gone out to breakfast and then to a local community center to play, and on the way home we stopped in a bookstore, just for a moment, so that I could run in and pick up something I needed.

Brett and Sofie stayed in the car to wait for me. And of course, being a bookstore, I got caught up in a few other things and took a bit longer than I intended. I was feeling a bit guilty when I came back out to the parking lot, expecting to see Brett in the back seat trying to comfort an increasingly fussy Sofie.

But instead? I saw Brett, engrossed in a book in the front seat, and Sofie in her carseat, engrossed in turning the pages of her rubber ducky book, both of them just as happy as clams.

Yep, that's our kid. :)

She's also continuing to be very verbally gifted for her age, with an impressive grasp of grammar and tenses and a huge vocabulary. Lately she's been moving into simile and metaphor. In the last week she's repeatedly told me that the cat's tail looks "kinda like a black pickle", that the sign at the local Fred Meyer looks "kinda like the back of a monster" and that one of her little friends wee wees "looks kinda like a snail." (Names hidden to protect the innocent.) Now how's that for a poetic nature?