Change of Pace

It's inevitable. There just aren't enough hours in a day. At least not when you are making an effort to get somewhere close to seven hours of sleep a night. I'm envious of those Bill Clinton/Martha Stewart types who are able to be productive on four or five...I'll be THEY manage to keep THEIR blogs consistently updated.

The fact is, no matter what I do, someone gets the short end of the stick. Sometimes it's my mom, when I skip a visit after work so that I can pick up Nathan from daycare when one of the other kids has a school event that Jack needs to attend. Sometimes it's Nathan, who gets fed another nutritious Happy Meal (not that he's complaining) after a ten-hour day in nursery school while dementia patients hover and coo around him. Almost always it's Jack, who as an able-minded adult has to fend for himself while his life partner attends to everyone's needs but his. And of course, I don't usually take very good care of myself either, despite constantly renewed vows to start eating better and exercising more regularly.

For now, in lieu of more excuses, I'll try to hit the highlights of the last few months:

My mom enjoyed a few visitors towards the beginning of the year, including her sisters and Tom and Judy Ordens, dear old friends from our time in Wisconsin, who had last seen her about eight years ago on a trip to see the Frank Lloyd Wright Falling Water house in Pennsylvania. They were wistful about not making the trip to visit a year ago, when my mom was more cognitively present, but you can only live in the present and they were grateful for the change to spend a little time visiting with her and connecting with her as best as they could now.

Tim was also in town for about a week in February, which gave me a longer break and we were able to deal with some of the legal paperwork that this kind of unexpected medical situation brings.

As far as my mom's health goes, her cognitive decline seems to have stabilized somewhat and her weight is stable (she lost a fair amount over the winter), but her emotional health is a bit more of a roller-coaster. The last couple of weeks have seemed bad to me, with increased paranoia and agitation, but the regular nurses and aides tell me that she's generally pretty calm and acts happy. I guess it's a sign that she still recognizes me, that she reacts so strongly during my visits. I guess my presence stimulates an emotional reaction and she just wants to communicate about what is happening to her. She's not necessarily clear on WHAT bad thing is happening, but she's definitely able to express that she's not pleased about it!

It's something I need to have a conversation with the geriatric psychiatrist about and maybe they'll try adjusting her medications.

As so many of the other residents are much, MUCH older, it's inevitable that I'll be witness to their passings as time goes by. One of my favorites, Dolly, recently died of heart failure, even though I would have said she was one of the healthier ones. She was a small woman and wore her hair pulled back in little girl braids and had particularly child-like mannerisms and during almost every visit we would discuss how her mother was coming to pick her up and take her to Webster.

In contrast, my mom's first roommate there, Millie (who everyone calls Grandma), is now almost 105 and I'm fairly convinced that she is NEVER going to die.

I'll go ahead and post this is hopes of writing more soon.

So far, so good for 2013, though unfortunately not quite as happy as the tail-end of the old year. December gave us a bit of a break after the gero-psychiatrist adjusted my mom's medication and her mood seemed to really lighten. She was consistently less anxious and seemed to connect better with other people, even towards the end of the day. Nothing changed since then in terms of what medicines she's taking, but maybe she developed some tolerance to the dosage, since lately it seems like she's back to experiencing more down days and she's a lot less alert during my weeknight dinnertime visits. It's worth a call to the doctor though, so I'll have to see if he has any theories.
Having said that, she's still not nearly as anxious and argumentative as she was back over the summer. Despite a vicious flu season in these parts, she's staying strong and healthy and even though she probably covers several miles a day with all of her restless walking up and down the halls, she's still got enough of an appetite to keep her weight up. It's just been so rare through the whole process of this disease for things to ever get better, I just got a little spoiled to see those glimmers of optimism and personality again.

Another happy thing to share is that my mom has been able to visit with her sisters several times over the past couple months. One of Erin's ongoing stories is based in Missouri and she has been able to schedule STL layovers during some of her other travels. Sheelah and Brigid were just here last weekend. The excitement and conversation does seem to leave her a little more tired than usual, but I really do think she recognizes everyone and enjoys the interaction.

Other than that, things are pretty much the same. There's been a little bit of turnover with the care-taking staff, but the core cast of characters has remained pretty consistent. The same is true as far as the other residents, though I worry sometimes that not everyone will make it through the winter. Except Millie, of course. My mother's cantankerous, 104-year-old former roommate will probably outlive us all.

I've been struggling of late when it comes to updating the blog. The problems is that this forum really strains to fulfill several purposes and at times the needs of each are at odds.

This is MY blog. For most of its life it was a running blog, though in reality it really started off as more of a self- involved relationship blog. More recently it functioned as a photography blog. All of it was a record of my life and my personal struggles and triumphs and whatever advice or cautionary tales I could pass along to others interested in those subjects.

And now? I guess it's more of a caregiver blog or occasionally a mommy blog (though, for the record, I DID run today). The problem is that these sorts of blogs are about people other than myself, so every entry involves at least a modest intrusion on someone else's privacy.

Besides that, it no longer really seems like an appropriate forum to just vent or gripe and complain, even if sometimes that's all I really want to do. I want to stay upbeat and positive and use the blog to share heart-warming and encouraging stories about life with MS, but lately all I want to do is just rage against the unfairness of it all. Even when there are hopeful developments to report (she's more engaged with other people, her verbal communications are easier to understand!) they tend to come with trade offs that hardly seem to justify the gains (she keeps hitting and pinching people hard with no warning and tells me that people want to kill her and that she hates me).

So, what's left is to just try, try, try to appreciate the fleeting and occasional moments of tenderness and connection that do still happen. Nathan's hugs that sometimes calm her spirit for a minute (as I hold my breath and stand ready to intervene if she suddenly grabs him too roughly) or the heartbreaking apologies and tears that sometimes come after she's said or done something particularly hurtful.
"Did you mean to hurt me mom?"
"YES!"
"But why did you want to hurt me?"
And in a very small, defeated voice, " I don't know..."

Just a little update of my mom's dog, Rudy. She hasn't seen him in a while since he stresses out so much in a new environment and now that she's a little further away, I hate to skimp on a visit with her just so we can take the dog home. Next time I take him for a bath though, I'll try and swing by Delmar Gardens with him.

Since he had about half his teeth removed last year, this old mutt's had a new lease on life. He still has some toiletting confusion at times and his eyesight and hearing are atrocious, but he's lean and healthy and even downright playful at times.

For all of our worries about his temperament, he's remarkably patient around Nathan and sometime seems to almost enjoy his company...or at least tolerates it! For his part, Nathan is very fond of old pooch and I'm not looking forward to explaining where OOOOdy went when that time comes.

Ah, Missouri...of course, he IS in fact turning left.

In this current election/convention season, it's impossible to avoid the constant barrage of political commentary, though not being a television household, at least we're able to avoid most of the overwhelming bitterness contained in the attack ads. Most of the Facebook newsfeed chatter aligns pretty closely with my own beliefs, but living in a red state, you never know when a neighbor will throw out some comment about how much better off we'll all be after we get rid of Obama or you pull up behind someone in traffic who hasn't bothered to look up the definition of socialism.

I can, of course, say that all of this is relevant to a running blog following Paul Ryan's outlandish claim of being a sub-3 marathoner. Maybe he is just completely clueless and this says nothing about his character, but I'm still suspicious as to how you forget just missing the four-hour barrier in the ONE SINGLE marathon you've ever run. Yeah, I know it was more than 20 years ago, but it's the same year I ran my first marathon and I sure as shit never forgot missing MY goal time for that race by one measly minute. If your brain can't retain that basic bit of personal trivia, then what does THAT say about you?

This thread pertains to my mom as well since I'm having trouble figuring out any legal and ethical way for her to vote in November. I have no doubt that I could choose candidates FOR her that would be in accordance with her long established preferences, but voter registration materials state very clearly that powers of attorney do not include the right to vote for someone. I am under no illusions that she could go into a voting booth and do anything more than just stare uncomprehendingly at the buttons.

It really is frustrating though since it is likely to be a close election and even just a few months ago she was verbally expressing very clear thoughts on her opinions of candidates in the primary race. (And every time John Boehner would show up on the Evening News she would perk up and say, "I just HATE him!") So in addition to everything else this disease has taken from her, it looks like it's effectively invalidated her U.S. citizenship as well.

And finally, the latest update on my mom's condition necessitates a mention of how we spent all day Sunday back in the emergency room after she behaved aggressively towards another resident, putting her hands around the woman's neck. I would have been less surprised if it had been the other way around, knowing this individual, but as it was, Delmar Gardens is obligated to send anyone who is a danger to the self or others out for observation. Which only sort of makes sense since she's pretty much always a danger to herself as much as she's fallen lately.

So, after four hours at the hospital for bloodwork, a CAT scan and urinalysis, we found out that there were no obvious underlying causes for the incident (other than the fact that Resident R. Is a loud and annoying personality) andf we drove right back to where we started. Everything seemed fine today.

One of the other residents did pass away last night (just the first of many that we'll see there, I presume) so I asked about the possibility of my mom changing to a new room. I'm just worried that she could lash out physically towards her current abrasive 104-year-old roomie and that would just not be good. It's actually happened once already, but fortunately, M. is one tough little centegenarian. The new room vacancy won't work for insurance reasons, but the nurse agrees that my mom and "Granny" are not compatible, so it looks as if a rearrangement is likely to happen soon.

I can't even remember the last time I went running; it has to have been sometime in the spring. But in honor of the men's Olympic marathon this morning I promised myself that I'd find a way to sneak in at least a few miles this weekend. Now that our awful heat wave has finally broken, I have no more excuses. So Nathan and I hit the road after breakfast and he took a nap (what a life) while I pounded out four and a half hilly, 11:16 minute miles -- more than twice the pace of the runners in London. Now I've just got to make this the start of a new routine. Though minus the part where I let him clamber around in the little playground adjacent to the running trail until he started acting all weird and I peeked into the play house to find him surrounded by RATS!

Not really. They turned out to be baby bunnies. Totally freaked me out for a second though!

I got a little more exercise in the afternoon strolling up and down the halls with my mom, over and over again. She's still just so restless, but now that she's got her helmet, the nurses are okay with just letting her walk and walk (and walk and walk). I stayed with her until she was completely exhausted and she let me and a nurse aide seat her in a big BarcaLounger for a pre-dinner nap. The staff all seem to think she's doing better though. Tomorrow I'll give a call to the gero psychologist who saw her on Friday.

Tim, Andrea and Gabi made it to Missouri in mid July after a week of unsuccessful house hunting & a loonng drive out from Virginia. The visit already feels like it happened ages ago, but that's because it's been a pretty eventful few weeks since they left.

My mom did seem pleased to see everyone, even if it wasn't always clear that she was exactly clear on who everyone was. Her energy levels were also very limited, meaning that Tim never was able to really visit with her for any sustained period of time because after 10 or 15 minutes, she'd simply doze off in her chair.
Although I had to work most of the days that they were here (to preserve as many of my remaining days off as I could) we still had a nice visit, making it out to the zoo, city garden and Purina Farms. It was fun watching the cousins play together, though by the end I think Gabi was just starting to realize how easy it was to knock Nathan over.

And then. So the day after they left (and of course it was the day after they left) and after I'd already stopped by for an evening visit, my mom is in an agitated mood and rushing around the unit she lives in and she stumbles into the nurses desk hard enough to give herself a bloody nose. Jack was out that evening, so Nathan and I spent the evening with her in the emergecy room until we got the bleeding under control. That was a Thursday night.

Friday, I got a call around noon that they're sending her back to the emergency room for being combative and throwing food at the nurse's aides. The ER docs seemed somewhat mystified about why we were back and what we wanted them to do for us, but one prescribed a different antibiotic for the UTI she was being treated for and recommended a different sedative. This whole experience was especially frustrating because she was supposed to see a gero-psychiatrist at the nursing home that afternoon, but they called for the ambulance before that could happen.

Saturday. For the sake of brevity...more of the same, at a different hospital this time. But this time she was admitted into the behavioral health ward (aka psych ward) for further observation. She stayed there until Friday, then was moved over to the behavioral health senior unit, which has a little bit less of a hospital feel to it and somewhat less screaming.

After a little less than a week there (and minimal improvement in my eyes) she was cleared to go back to Delmar Gardens. We've been back there about two days now and she's still super restless and not very steady on her feet. Especially the ways she walks with her back hunched and her head looking straight down, she remains a very serious fall risk.

The head nurse got her a bike helmet for safety, so it gives her quite a sporty look, but she's so tired now from lack of sleep and rushing about, she spends a lot of time hunched over in a wheel chair, resting her head on a towel and napping.

Next up, assuming we don't have to make more trips to the ER or senior psych...she'll probably do some sessions with occupational therapy to try and help with the posture, we're hoping that the Aricept she started taking will help to stabilize her moods a bit and I'm going to look into whether it would help if we hired some one to sit one-on-one with her for a chunk of each day.

Fact is, the last couple of weeks have been very tough and ultimately, it's hard to tell if her sharp decline of late is the chicken or the egg.

It's been a predictable series of up days and down days since my mom moved into Delmar Gardens and all in all, it hasn't been as bad as it could have been. The caretakers there are definitely familiar and comfortable with the issues of dementia and it's clear that I won't be getting any more late night phone calls letting me know that she's crying again and could I please come over. It doesn't help with the fact that I know that the crying still happens and that she's still confused and frightened a lot of the time, but at least I know she's with people who won't freak out at the sign of a tear and who know how to redirect and distract her.

The biggest difficulty for me right now is that lately my visits, especially when I come with Nathan, seem to bring her more distress than comfort. I think that she does still enjoy seeing him, but her paranoia has become so acute over the past week, that all she can think about or talk about when we're there is that someone is going to try and hurt him or take him. When I try to assure her that he's safe and that I won't let anyone take him, she becomes very angry at me (she actually hit me quite hard today!) that I don't understand the dire nature of the situation. This had become an issue at Autumn View Gardens as well, so this is nothing brand new, but her distress over the matter seems even more intense now.

Now while I feel like I'm quite sane and reasonable in thinking that there's no way any of the frail little old ladies at Delmar G. are capable of stealing Nathan away from me, Jack has pointed out that if you step back for a moment and look at things with complete objectivity, my mom's concerns don't seem quite so irrational.

1. You walk into the place with Nathan on your hip and the event immediately triggers a chorus of, "Baby...baby! Look, look! There's a baby! Oh, isn't s/he precious, look at the baby!" This continues at intervals as the audience forgets and then realizes anew that there's a baby in the room.
2. In an attempt to connect with her, the staff frequently asks about Nathan...how's Nathan, how's your grandson, have you seen that little grandbaby of yours, oh, your grandbaby is so cute, I could just take him home with me, etc. It doesn't help matters.
3. A few of the ladies insist on trying to pick him up and get very agitated when I intervene. They will continue following him around, calling and reaching for him and grasping at his clothes. Even when I tell them that I'd like some private time to visit with my mother, they still follow us from room to room. Not shockingly, Nathan isn't a big fan of this attention either.
4. Many of the women will talk to my mom quite urgently about their own sources of anxiety, most of which are quite firmly based in their personal past histories. Whether it's about a delinquent order of office paper, a sick cousin or the most usual complaint of wanting to go home, the message to my mother usually translates to Nathan being in danger.

I find it intolerable knowing that she is there without me and that she is scared and angry and uncomprehending of why this is even happening, but it is even worse to feel like my visits only exacerbate the situation. I do feel like this is a safe place for her with a manageable scale and a proficient and compassionate staff. The level of care is appropriate and fits where we are right now. The only drawback, and it's a total Catch-22, is that some of the other people who require this level of care are intolerable to be around. They often scream angrily and they lash out and they harangue my mom with their own nervous obsessions and they contribute to making her even more anxious.

But what else is there to do? Even if long-term care insurance covered home care, our house isn't big enough to make that solution workable. I'm still going to check out the new assisted living residence with the memory unit, but since that's a private pay option, we would still eventually need to move back to Delmar Gardens.

So, for now, this is what we're working with. And it's not like there aren't any good days...there were a couple of them last week. It's just that I only seem to manage a blog entry after the bad ones!

An example of the blood-pressure raising color scheme at Delmar Gardens.

The gratifyingly more subdued palette of my mom's room.

I'm going to try writing in outline form just to make sure I've got the basics covered and then go back when I'm able to fill in the details.

A. Nathan and I got back to St. Louis on Saturday night

1. Relatively easy traveling with just the kid
   
2. Didn't leave enough time to get to the airport, so couldn't check the carseat
   
3. Missed great photo op of pack mule self
   
   • a. Nathan strapped to my back
     
   • b. Carrying overstuffed diaperbag and the carseat
     
   • c. Big DELTA sign reading "Need Help?"

B. Texts started arriving with info about various crises in Columbus

1. Sat 8:30 pm: She refused to sleep downstairs
   
2. Sun 6:30 am: The caretaker hours need to be adjusted
   
3. Sun 8:30 am: She refuses to take any meds & threw her juice across the room, scaring my grandma
   
4. Sun 4:30 pm: Email request arrives from a family member that I put my mom on Valium or Xanax
   
5. Mon 7:30 am: She refuses to eat or take any meds
   
6. Mon 8:00 am: Grandma is really upset
   
7. Mon 8:30 am: Apologies that this isn't going to work.

C. I called in a prescription for an anti-anxiety/sedative to try and get everyone at least through the week. For my mom, but I guess we all could have used it!
D. Since our plan to move my mom into the not-yet-open assisted living memory unit is not going to work, Jack and I spend the evenings of our "caretaker break" visiting area nursing homes. We make a suicide pact for our golden years. Tres romantic.
E. Wednesday, my mom had a really good day.

1. "Pleasant, talkative and very mobile"
   
2. Developing attachments to her caretakers
   
3. MUCH improved appetite, taking her meds crushed in food
   
4. Showing interest in and concern for her mom

F. Jack's kids ended their week with us early, so we could drive up to Columbus on Saturday. Nathan held up pretty well, but with all the stops it ended up being a ten-hour trip, so a certain amount of crying and frustration was to be expected.
E. My mom was super-subdued when we got there.

1. She was already in bed and didn't respond much when we saw her
   
2. She DID recognize Jack and call him by name
   
3. She didn't open her eyes when Nathan gave her a good-night kiss, but she did make some barely audible kissy noises.

F. Sunday, it was back into the car for the trip back to St. Louis.

1. My mom expressed a desire to stay in Columbus, of course.
   
2. Lunch at a Cracker Barrel in Indianapolis. Challenging, but successful.
   
3. Break to stretch our legs at a Cracker Barrel in Effingham, IL.
   
   • a. She pulls her pants all the way down in the main part of the restroom and refuses to go into the stall, starting to cry...while I'm trying to change Nathan's diaper.
     
   • b. Back in the parking lot, she tells me she's not going with us and won't budge.
     
   • c. Cars wait for us to move out of the way and she gets agitated when I try to get her to go to our car.
     
   • d. She shows an amazing ability to run quite quickly as she makes a break for it.
     
   • e. Cracker Barrel management comes outside to ask if we need help.

G. Back in the car. No more stopping until we get home!
H. Home.

1. Nice dinner
   
2. She agrees to sleep in Nathan's room downstairs after a brief crying jag upon seeing that the room she lived in last year is now the boys' room.
   
3. 2 am: She wakes up to use the bathroom, but goes right back to sleep
   
4. 3 am: Nathan wakes up hungry. Rare these days, but he's had a long couple days too.
   
5. 5 am: Nathan wakes up again crying. When I get him, she's gone....up at the top of the stairs, trapped by the baby gate. Good Morning everyone.

I. Monday: She reluctantly accompanies me to the nursing home we've picked out.

1. I had to hold it together when they couldn't accept the THREE MONTHS worth of medication that I'd just refilled (Anyone want some cheap Xanax?)
   
2. She does seem responsive to the caretakers.
   
3. Very subdued mood, lots of crying.
   
4. Complains about the color sceme.
   
   • a. "These are NOT good colors for me."
     
   • b. Hot pink and signal orange? I think she's justified in this.
     
   • c. At least her room is a soft teal, definitely a good color for her.
   
   
5. 4. Repeatedly asks, "Why are you doing this to me?"
   
6. 5. Not pleased with the idea of having a roommate
   
   • a. 103-year-old
     
   • b. crotchety
     
   • c. snores
     
   • d. leaves poop smeared on the toilet seat

J. In lieu of cleaning up roommate's feces, we are directed to the bathroom by the reception desk.

1. Toilet seat hinge is broken.
   
2. Seat slides off to the side when she attempts to sit.
   
3. Hard tumble to the floor, resulting in a bruise to her forehead.
   
4. Ambulance ride to the hospital emergency room for a CAT Scan.
   
5. Results are completely normal. As expected. The whole ordeal was really to satisfy Delmar Gardens' liability concerns.
   
6. Four hours later we return to the facility.

K. Nice relaxed bedtime after a quiet day adjusting to the new surroundings. Not.

1. "PLEASE let me go home with you."
   
2. Super friendly nurse aide who tries to rush mom into pajamas and into bed. Doesn't work.
   
3. Snoring roommate
   
4. LOUD nurses hollering back and forth in the hallway
   
5. Crying jag over forgotten toothbrush (that it turns out was in the suitcase all along)

L. Home.
M. Tuesday am: Back to Autumn View Gardens to pick up most of the belongings we left there.

1. I allow myself some snarkiness when a couple residents who were not nice to my mom ask, "Where's that CUTE baby?" I tell them that they'll never see him again. "Oh, give him a kiss for me." I don't think so. He has no idea who you are.
   
2. A housekeeper expresses interest in buying some of the furniture. I guess that's a good thing. (Anyone want a cheap loveseat?)

It's 11:30. If there's any hope of me getting to work on time tomorrow, I need to get to bed an hour ago.

In an ideal world I'd update promptly following one of our travel adventures, but as it is I'll try and recall things as best I can.

I got to Autumn View Gardens with plenty of time to pick up my mom for our trip to Ohio. I'd packed up all of my mom's cold-weather clothes and left just one outfit in the closet for her to wear. So I wasn't thrilled when I saw that somehow the aide had pulled an outfit out of the box of winter clothes. But whatever, not a big deal. So just a quick bathroom trip and we'd be off. Unfortunately, she was completely soiled and required another outfit change and a major clean up. By the time we finally made it out to the car, we really had to hustle to make the flight.

When we got to the airport, we were still okay...until we realized we'd left Nathan's car seat in the car and then my mom decided that she was NOT going and refused to budge another step. It's funny though, no matter how crazy things got, I never really felt overwhelmed by any of it. I mean, when the worst thing has already happened, nothing else really seems like that big a deal.

And besides that, it always amazes me how helpful everyone is to me when I'm traveling with my entourage. TSA didn't make me unstrap Nathan from his Ergo baby backpack when we went through security and both he and my mom were able to keep their shoes on. Apparently the latest regulations say that passengers under 12 and over 75 don't have to take their shoes off. I told them that I appreciated that, but that my mom was only 64 and they just waved me off with a pointed, "she's fine."

The important thing was, we did make the flight, even if it was just barely!

Nathan was a champ on both flights and I didn't even have to break out the baby Benedryl. I wish I could say the same for myself, as I got smacked with a bout of airsickness and Delta had NOT provided either me or my unfortunate seatmate with courtesy bags. I was able to threaten Nathan for the rest of the day, "If you keep acting up, I will barf on you....and you know I will!"

Upon arrival I rented an overpriced luggage cart for the first time in my life to get all of our stuff to the car rental (totally worth it). It turned out that I had not printed out a required voucher for the car rental and was going to be charged an extra $80ish for I'm not sure what exactly, but I allowed myself the luxury of a few tears at this point and the problem magically went away.

Finally, we got to my grandmother's and started the process of settling in there. My grandma already has 24-hour nursing care, so the plan was to add a second caregiver to the daytime routine from 10 am - 8 pm and have both the ladies sleep in improvised bedrooms downstairs.

Issue #1 came when my mom had trouble staying asleep in the family room. The light from the kitchen (where the overnight caretaker sits) may have been the problem or the noises made by my grandmother's dog or just the novelty of the situation and the unfamiliarity of the caregiver...whatever it was, the young woman was coming upstairs every half an hour or so to let me know my mom was awake again and very agitated. I'd sit with her for a bit, get her calmed down and then head back upstairs to try and get some sleep. Of course, come morning, her memory of the situation was that I had kept coming down to wake her up! Somewhere in the wee hours I finally brought her upstairs to sleep in the room she usually does when we're there.

I remember thinking that night that this solution was just not going to work and regretting that I'd allowed myself to be talked into dragging my mom all the way out there. I wanted to be optimistic, but I just couldn't imagine leaving her with strangers every night when she is so fearful and anxious.

The next day must have seemed terribly confusing to her, what with the sketchy sleep, two new caretakers, her sister, mother and daughter, three dogs and Nathan running around. Heck, I was feeling a little overstimulated by it all!

It's getting a bit late here though, so I'll continue the narrative tomorrow...