Elopement!

You just have to laugh...

From Liz:

I received a phone call from Barbara (Wellness Ctr) to tell me that, this afternoon, Mom decided she needed some cough drops (a particular type) and would walk over to CVS to buy some.  She dressed warmly, took her walker, and left Oakbridge on foot - didn't sign out or tell anyone where she was going.  She was going to walk a block up Rte 352, down Rte 452 about 2 blocks, and cross Baltimore Pike to the CVS, a total of about 0.8 miles. (Then back again, of course.)  The guard at the gate saw her, but apparently remembered her walking out to 352 in the past, to be picked up for a ride, so he didn't make much of it this time.  Barbara said the walker should've been a red flag.  Anyway, some incoming employees noticed her walking up the street and mentioned it to the guard.  Then it gets a little confused - I think the employees tried to pick her up but she refused to come with them.  The guard then sprinted off down 352 to intercept her.  A passing stranger offered to drive them back to Lima - but Mom refused again and insisted she had to go to CVS.  Eventually they persuaded her, but only by promising to take her to CVS first.  By the time they persuaded her, she had reached the library on 452, about 0.6 miles from Oakbridge Terrace.  So this stranger drove her and the guard (and maybe a nurse's aide - this part is unclear) to the CVS, the guard went with her to look for the cough drops (which the CVS didn't have!), then the stranger drove them back to Lima.  Keep in mind here that there are still banks of plowed snow at the roadsides, and probably no sidewalks (that I remember, anyway - you can bet I'm going to look Tues.).

LeeAnn called me a while ago to say that this is referred to as an "elopement."  (Don't tell Dad; he'll think she's seeing another man!)  Lima has to report the incident to Dr. Wertheimer and the Dept. of Public Welfare (which oversees assisted living facilities).  They must take some steps immediately to show they are ensuring her safety.  The first step is to see if there is any physical problem, like illness, that would contribute.  They will do a urinalysis to test for any infection that might be brewing - remember LeeAnn told us that, in the elderly, infection can have immediate cognitive effects, even before any fever shows.  Also, they will put an alarm sensor floor mat outside her door after she goes to bed at night.  (LeeAnn said Mom will not like this - I'm sure that's true, if she ever finds out!  Maybe they'll remove it before she arises.)  There is only one nurse's aide on duty all night, and she covers both floors, so this will alert her if Mom leaves her room in the middle of the night.  LeeAnn asked that we let her know if we have any additional ideas for safety measures.  The regulations of an assisted living facility permit the residents to sign themselves out of the facility and leave the premises on their own say-so.  I gather that this is part of what defines an assisted living facility, so if you need different rules then you don't belong there.  They hope that explaining to Mom why this was an unsafe action and poor judgement will make this a one-time event.  Mom apparently said to them that she had no idea it would cause such a fuss.  Until now, Mom has consistently signed herself out, so we don't know why this time she slipped up.  Frankly, I'm not sure it matters if she signed out or not if no one asks her where she is going.  She could have signed out and then gone off to CVS anyway.  LeeAnn was also concerned that it took so much effort to persuade Mom to stop walking and get in the car - she was going to CVS, and that's all there was to that.  Mom has an appointment with the neuro-psychologist this week for a 3-hour evaluation - I don't think they'll look at this as a good sign.

More about Dad (mostly)

I spent a lot of time with Dad and some with Mom on Mon and Tues. 

Overview:
Monday, Dad seemed pretty down.  I sat with him at lunch and dinner.  He really wasn't interested in eating much and had to be coaxed.  Dentures kept flopping around making it hard.  Also, he is generally picky -- has never been big on fish or vegetables.  The meat is chopped; looked OK to me, but he finds it unappetizing just because of the way it looks.  He is finally allowed to have thin liquids again so he was able to have ice cream!  At least that was good.  Anyway, the day was kind of a bummer, though he did cheer briefly when Liz came.  He isn't particularly interested in TV and doesn't read much, so he spends a lot of time sitting asleep in his wheel chair (like many if not most of the residents in medical).  He says his mind wanders all the time, but mostly to things that are not good.

Tuesday he seemed somewhat cheerier and he ate better.  I think some of this was due to the improvement in his teeth (that I'll explain in a minute) as well as the fact that a lot was going on.

Mom was pretty much the same.  (Years ago she told me that as you get older you get 'more the same' -- i.e., your personality traits get stronger.  That is certainly the case for her!)  She was glad to see us and seems pretty settled.  It does seem like she doesn't do nearly as much as she used to, though -- lots of naps.  She does have a smaller puzzle going, but it isn't going very fast.  And she plans to get Christmas cards sent out some day.

Doctors and Dentists:
Monday Dad had a visit scheduled with the mobile dentist to start on getting his dentures fixed.  Liz came specifically to be there for the dentist, but as it got late she called to find out where they were and they had no record of his appointment.  In fact, they had no plans to be in the county that day.  Since we had been considering the mobile dentist because we thought they might be quick to respond if needed in an emergency, we decided maybe we should reconsider.  Liz called  local dentist recommended by the Lima folks.  They had a Tuesday cancellation, so she came back on Tues and took him.  That went pretty well.  He verified that Dad should have new dentures.  It will take four visits (a month) to get them -- a long time when you are in pain -- but he made some temporary adjustments to Dad's current dentures that seemed to help and should be OK for a month.  Eating seemed to go quite a bit better after that.  Between this and being off of thickened liquids, I think/hope his eating and spirits will improve.

Liz also took Dad to the Urologist.  (It worked well that she could do both apptmts the same day.)  It was not great news -- he seemed to have a fuller bladder than they would like (amazing what they can do with ultra-sound) -- but it was not so bad that they will go back to the catheter quite yet.  The doctor wants to see him again in a few months.

Therapy:
Because of the way Medicare works, both he and Mom are now down to three days a week of therapy.  (I think you get five days for some period of time after you come out of the hospital.)

The PT seems to have helped Dad's walking.  If he remembers -- needs a lot of reminding -- he will stand up straight like he is supposed to.  We walked down to Mom's room, hung out a bit, and then walked back.  I'm pretty sure that was a first for him.  (The distance between rooms might be 40-50 yards? including an elevator ride)  I think normally the only walking he does outside of PT is to and from the dining room, which is maybe 15-20 yards.

Speech therapy seems to be helping, too, or at least he is doing well enough that he can have thin liquids as mentioned before.  (If you don't remember, this is not really about speech but about his ability to swallow w/o aspiration -- i.e., food going down the wrong way. )  He has been on 'supervised eating' meaning that someone keeps an eye on him as he eats.  I think there are two reasons for this:  watching out for aspiration and making sure he eats enough.  For these reasons, they haven't wanted him eating anywhere but in his regular dining area.  Good news is that the speech therapist says he doesn't need to be supervised any more from the aspiration perspective.  Not sure yet about the other aspect.  Anyway, when they say it is OK, he could go eat with Mom.  That would be nice, but is still somewhat problematic.  First, someone has to take him (I think Mom thinks she could, but I don't know if she can or if they will allow it).  Second, someone has to encourage him to eat.  The aide in the dining room normally does this.  Not sure how that would go with Mom in charge, though I can sort of picture it...

Other stuff:
After way too much work, Dad finally has a regular land line phone.  Yay!  It seems that it will be much easier for him to get to and to operate.  I canceled his cell phone.  I hope this actually helps.  Have been realizing that he doesn't actually spend a lot of time in his room so it may still be hard to reach him.

I put up a number of pictures in his room.  Had to hang them by strings from the ceiling since we aren't supposed to put nails in the walls while he is temporarily in this room.  Not great, but better than nothing.  He seems to like it and that is what we are aiming for.  (Dor, I cracked the glass on a picture of you.  No offense.  Will get it fixed:)

Am thinking I will order a transport chair (folding wheel chair) for when he goes out to doctor, church, etc.  Lima does not really have a supply of them for borrowing, though we were lucky to borrow one a couple of times.

One last thing:  I am pretty impressed with the folks at Lima.  All things considered, they do a great job.  And I am also very thankful that Mom pushed to get signed up there and to sell the house when they did.  Things are not perfect, but they could be a lot worse.  And Dad and Mom are very fortunate that Liz spends so much time visiting and watching out for them.  Few residents seem to have that much family involvement and it makes a huge difference.

[P.S. I just got Dad on the phone -- finally.  Figured he would be going to bed and he was.  He seemed very sad -- on the verge of tears.  Wishes he saw Mom more.  Feels like he is 'holding everything up'.  I'm guessing that probably means he feels like he should be good enough to move up to assisted living, but he is not and he thinks it is his fault.  Please pray for him.]

Dad's Care Meeting

Lima holds a regular (monthly?) 'care' meeting for those in the medical unit (or at least for Dad).  They had one yesterday.  Liz and Mom were there.  Dave and I were on the phone.

Here are notes from the meeting:


Present: Suzanne (nurse), Nancy C. (social services and activities), Karen (nutrition services mgr)

Therapy will be reduced from 5x/wk to 3x/wk starting tomorrow - not clear whether all therapies are affected (Phys, Speech, Occup.), need to ask the therapy dept

• some discussion of medicare B - Medicare A is related to hospitalization, so any therapy that was related to the hospitalization was covered by Med A.  The reason for hospitalization was a sugar low, and it sounded like they can't claim that as a reason for PT or OT any longer.  May be able to stretch it for Speech Therapy.  Again, said to ask the therapy dept.
  

Walking program -- Dad uses the walker (escorted) to get to 2 meals a day; goes to breakfast in the wheelchair due to time constraints (on the part of the aides, I believe).  I think his walking is noticeably stronger, more upright.

Diet same, mechanical-soft -- start thin liquids next week, with monitoring for aspiration  (this change is as a result of the barium swallowing test on Wed.)

• starting at beginning of week allows them to monitor (not around on weekends)
  
• permission for thin liquids is required for ice cream

Dad still needs help with everything (ADL - activities of daily living).  Suzann said that they have reservations about his ever being able to move to Oakbridge, but also said it was too early to say for sure.  I said that there are still definite things he can work on to make him more independent than he is.  They mentioned that he will not be in room 27 permanently anyway, unless he wants to keep a single room (cost of $72/day extra).  Said that if we were considering keeping this room we should mention it to them as soon as we could.  Said also that as a permanent resident of Willowbrooke, if Dad is hospitalized for any reason, his bed is held for him.  As a temporary resident, if he is hospitalized he may not find a bed open at Lima when he is released.

Weight 131 (measured weekly)

Dad complained about food:

• about thickened liquid
• food doesn't look appetizing

Dad said that the dentures are his biggest problem.  Mobile dentist is coming Mon.  We asked about leaving his dentures out for eating - I don't think they said either "yes" or "no", because the discussion veered off into how easy it is to lose the dentures if you take them out at meals.  Anyway, no one said he wasn't allowed to take them out.

He is still not permitted to eat at Oakbridge with Mom.  The issue is not getting his special meal transferred, but that he still requires supervision while eating.  I guess I should've asked what drives the need for supervision - will it continue after he has adjusted to thin liquids because of his other swallowing problems?

Dad has breakfast at 8, therapies during the morning, then lunch.  Sometimes therapies aren't completed and are continued in the afternoon.  There are "social activities" scheduled in the afternoon, too.  Dad complained that he is sometimes taken to these activities without being asked if he wants to go.  Suzann said she would arrange that he would be asked first.

I talked to Nancy R. (Dad's reg daytime nurse) after the meeting:

  She said some of the bloodwork results are back (and look fine, a little low in protein due to diet probably), but not the zinc level results.  If the zinc level is normal, she agreed he could use extra Fixodent until the dentures are fixed.

  Blood sugar levels are consistently good - range from about 75 to 100.

  Said she will cut his fingernails and check when the foot doctor last checked his feet and cut his toenails (answer: Dec 21, and he does this service every 2 months unless asked to come earlier).

  She said it's fine to leave the nightstand where Dad can reach the phone.

  She checked to see if Dad had standing doctor's orders permitting him to leave Willowbrooke for an outing (asked this because of the memorial service at the church Sat.).  Answer was that he had no such orders - Nancy then called his doctor to arrange for those orders, so they are now in place.

  Said that the alarm on Dad's chair/bed was a trial period (or a period of trial, to Dad), and I didn't see the alarm anywhere while I was there.  I guess it was removed.  But they found him standing in the bathroom this AM, on his feet but looking shaky, arms and legs spread for balance; he hadn't pushed the button to call the aide or nurse to supervise his getting out of bed.  I asked Dad to please call them when he needs to get up, he asked "why?"

Status 1/17

MB and I visited today and Liz came down for the afternoon, too.  We had lunch with Dad -- wanted to see what his issue is with the food.  Mom did not eat with us, partly because she had to run out to book club but also because after eating there once she decided that the food is not good in Dad's dining room.  I'm pretty sure that it is the same food that is served in her area, but who knows.  MB and I also stayed around and had dinner with M&D in the regular upstairs (independent living area) dining room.  It is very nice and once again a lot of people stopped by to say hello.  I think this was the only time they've eaten together since the one time Mom tried out Dad's dining room.

Unfortunately, Dad is still in rather low spirits.  He was glad to see us, of course, but he simply is not happy and that's bad for a lot of reasons.  Many of the problems revolve around eating.  A basic problem -- and maybe the most important one -- is that it hurts him to eat, apparently because his dentures don't fit well.  Liz is working on the dental end of things to get this remedied.  I hope it goes well and soon.  Oddly, it seemed like today was the first time he mentioned that it really hurts him to eat.  Also, he is still on the soft/pureed diet with thickener in his drinks so much of the food is not very appetizing.  Between the pain and the food, he doesn't eat enough (and probably doesn't get enough liquid) which makes him feel even worse.

Dad liked Granite Farms much better.  This is partly because Mom ate with him there, but there are other reasons, too.  As Liz explained in an earlier post, the business with alarms on his bed and chair makes him feel like he is in prison; I can appreciate that.  They won't let him try to go anywhere or do anything by himself.  It doesn't really foster improvements in his ability to do things for himself.  And many of the people in the area are parked in their wheel chairs schlumped in front of the TV in the common area -- it's not something to aspire to.  It feels like the environment is dragging him down.  Unfortunately, though he is in better shape than many in the medical area, he is not good enough for assisted living.  So please pray for him.

Mom is OK.  She seems reasonably happy and is fairly settled.  She does get up to see Dad regularly, though we wish she would spend more time with him.  It means a lot to him.   Mom's room feels pretty much like home unlike Dad's room, which in spite of some touches of home still feels like a hospital room.  David modified her puzzle board to fit on the fold-out desk area she has, so she has a puzzle going for the first time in a while.  She got to church yesterday and book club today (Aunt Kathy picked her up), so she has a bit of social life.  It also sounds like she keeps in touch with people by phone (said she talks with Aunt Bet pretty regularly).

I brought up the subject of selling the car today.  Interestingly, she did not object to losing the car -- seems to have accepted that she won't be able to drive -- but she would rather keep the car in the family, perhaps giving it to one of the grand kids.  I can understand this;  it's nice to be able to pass your things along.  Selling it isn't quite the same.  But how to work out who gets the car?  Seems easier to sell it.  Have to figure that one out.

On the walker front, not much has changed. She was not using it in her room and when I asked she simply said that she does not use it in the room.  (She knows she is supposed to.)  There is no convincing her, so I didn't even argue (much).  I did ask if she has had any falls.  She said, "a few, but they were minor."  Aiee, aiee, aiee.

On the positive side, MB, Liz, and I had a nice time with Dad in the afternoon (while Mom was at book club) going to the apartment, picking up a few things, and looking through old stuff.  I found a couple of things that made Dad (and all of us) really laugh.  These aren't relevant to M&D's health, but you might enjoy them.  When our kids were little, we used to write down the really hilarious things they said.  Apparently Mom and Midi did some of the same:

• Mom to Liz (when Liz was little):  Isn't that Dorrie's money you have?
  Liz: Well, when Dorrie isn't using it I call it mine.
  (Gary, does she do this with you?)
  
•  Something I said when I was 4 (written down by Midi): Mommie owns two great big phone books.  She sure doesn't know a lot of people!

A Little Improvement for Dad

From Liz (edited):

The last week has not been a particularly happy one for Dad, but today he was in a somewhat improved frame of mind.  Not perfect, but better.  Still didn't like his breakfast or lunch, but the new menus (with the upgraded-to-mechanical-soft diet) don't kick in until tomorrow.  Keep your fingers crossed.  

On a good note (I hope), Dad had his catheter removed today at the urologist.  Hooray!  He has a follow-up appt in two weeks.  They will do a scan of his bladder then.  His prostate is only mildly enlarged, and he is to stay on the Flomax (which relaxes the prostate, I think he said).  Hope he will do OK with getting to the bathroom.

And maybe it was just refreshing to get out of the Lima and wheel around over at the doc's office (at Riddle).  There is a great view over the buildings and treetops from the breezeway from the parking garage - he always remarks on it.  I wheeled him to the hair salon when we returned, arranged for them to cut his hair sometime this week, then right into PT, where Mom joined him and everyone was chatting.  Oh, that reminds me...his speech therapist (Maggie) was there too and said that he is to have another swallowing test at Riddle next week, to see if he can get off the thickened liquids.  Another good note.

And from Dor:

I think  if nothing else the removal of the catheter will be good for his mental health - affirmation that he has "made progress" - and he worries so much that he is "failing."    I can add a strong second on the "getting out and about" front too - when I got there Monday night, I took him down to visit Mom.  Kind of unplanned - I had knocked on her door & gotten no response so I headed up to see him first.  After talking a bit one of the things we did was "test" his phone - by calling Mom!  She was indeed awake (though barely - the nurse told me later her regular bedtime is a pretty firm 8:00 ) so we went down to visit together. Sat there and read through some more Christmas cards and of course went over my "to do list" with Mom.

Anyway, point is it is great for him to be in that environment - he commented several times on the things in her room that feel like home. Also several folks in the hall or at their doors greeted us and he just perked up engaging with them a little.  We talked on the way back about maybe bringing a few more things down from the apt to make his room feel more like home.  I will ask tonight if we can hang anything on the walls.  He would love to have the Rose Valley map & Aunt Kathy's painting.  I think I could rig something from the ceiling trim  -  along string or yarn - that wouldn't do any damage to the walls. Keep thinking positive!

Things Could be Better

Got this from Liz who has been busy with Mom and Dad ever since getting back from vacation:

Another little update.  I talked to Karen (Clinical Coordinator) at the Wellness Center today.  She is getting back to me with the fee info on laundering Mom's sheets.  I asked her about Lifeline or Medalert, and she said that all those companies will respond to an alert by calling 911, which circumvents the Lima staff.  The police would arrive.  I'm not sure she's entirely right about that - thinking about some of David's stories.  I had previously verified that Mom only needs to formally sign out of OBT if she is going outside of Lima Estates, but she is supposed to inform someone at the OBT desk of her destination any time she leaves OBT.  I don't know if Mom really goes far from OBT often (like to the main lobby even), but she does go regularly to the computer room upstairs.  Karen is putting the computer room on her chart, so that they would think to look there if they didn't know where she was.  Karen also recommended that Mom be told that she has to formally sign out whenever she goes anywhere (Mom is going to love this), and Karen is going to tell OBT this.

I also talked to the PT dept today - I think Tricia is the main therapist, but Mike is also there (and Chris floats back and forth between Lima and Granite).  Mike answered the phone, and I asked him about Dad's status with the walker.  He said Dad is doing well with it and getting stronger, but is still on supervised-use only.  Unlike at Granite (I think), Dad is not allowed to get up from anywhere (wheelchair or bed) without supervision.  He has to push the call button from bed in the morning in order to arise.  Lima even has pressure-sensitive pads that are put under him both on his wheelchair seat and in bed - if he gets up without calling someone an alarm goes off.  This has happened at least a few times and Dad is upset.  He says he can't even turn around without an alarm going off.  Maybe it wasn't well-explained to him beforehand, or maybe he just didn't remember about it, but he's been a bit disturbed for the last few days.  I didn't even know about the alarm until yesterday, so I explained to him then.  Dad is just generally down on the whole business - the alarm, going to the activities where people next to him are asleep in their wheelchairs ("what good is that!"), said "this whole thing" doesn't seem to be working.  Mike said he had a bit of a "meltdown" in therapy, expressing his unhappiness about stuff.  Also, Dad is upset that he can't eat with Mom (which is because Mom won't come to Willowbrook to eat with him, and he can't eat at OBT because of the special diet).  Mom apparently asked Mike repeatedly today who she should talk to that could allow Dad to come to OBT for meals.  Mike tried to tell her to be patient, Dad has a special diet and still needs supervision, can't come to OBT yet.  He thought Mom's pushing might be making Dad anxious. (M and D have therapy at the same time, when possible, so Dad was there too.)  Also Dad got in "trouble" with the nurse yesterday because they couldn't find his lower dentures in the AM, went on a major hunt.  He had put them in his pants pocket when getting ready for bed (because the denture cup was in the bathroom, which he didn't know) and they ended up in the dirty clothes bag.  I have put the cup next to his bed now, but I bet I should've labelled it "keep at bedside" because a different aide is bound to think it should go in the bathroom.

There sure seems to be a lot more fuss going on with Dad at Lima than at Granite.  I do think a lot of it comes down to the alarm (which Mike said would likely be removed next week) and Mom's attitude.  I swear Mom is like a butterfly these days, flits around, comes to rest for only a minute or two at a time.  She doesn't eat with Dad, but she goes over to see him a few times a day, I think.  I imagine she wheels in, plunks down his mail, says three sentences, and leaves.  "Here's your mail, Fred.  Did you have therapy this morning?  OK then.  See you later."  At 3:30 yesterday, as I was leaving, she kissed Dad and said "See you tomorrow."  She was going to take a nap, as was he, and he offered her to nap on his bed while he took the recliner.  She said she'd rather go back to "her place."  I suggested she come over after dinner to watch the news with Dad. She said she watches it at "her place."  Eventually she allowed that she might come watch the news - "we'll see."  Then "see you tomorrow" again.

About eating meals together, Mom also told me that she figured she'd wait until Dad's swallowing was better and he could eat at OBT.  I should have said earlier that she did eat dinner at Willowbrook with him on Tues. and did not have a good experience.  The "service was bad" - that is, her food was slow in coming and she didn't think it was what she ordered.  I have told her that they would do a good job of transferring her order if her dinners at Willowbrook were prescheduled - like, MonWedFri, or whatever.  She eats dinners with some friends, but I don't know about lunch.  Maybe we can talk her into lunches with Dad.

Maybe today will be a better day.

Dad is back at Lima

He moved yesterday with help from Liz and Dave.  He is in a single room in the skilled care unit (Willowbrooke Court).  I forget the room number at the moment but will post it soon.

It's starting to feel like maybe we are getting back to a steady state.  Hoping that M&D will be able to see each other reasonably often.  It's great that they are in the same facility, but they are farther apart than they were at Granite Farms.  It is too far for Dad to walk, so it will be mostly up to Mom to visit him.

They've gotten out a little more lately -- Christmas at Dor's, belated Christmas family celebration the day before yesterday at David's, church, and book club at Aunt Kathy's (Mom).

Aunt Betty asked about Dad's urologist and endocrinologist reports.  I will check with Liz and Dor who know better than I.

Oh, and the old land line phone number is now working in Mom's room.