Saturday update on Lena

Rosemary here updating:
My sister Joyce and I went to see mom and dad on Friday.
Mom seems to be coming out of the fog after the removal of two medicines she was taking. She seemed more alert, and happy. While we were there, she did not suddenly fall into a deep sleep as she was earlier.
She is enjoying pureed foods, and continues to do well with the speech therapist with the mechanical soft.
Physical therapy took a decline last week with those medications, so this week and over the next few weeks it will be catch up. However this week-end she has her favorite physical therapist, Jonathan, so hopefully he will boost her confidence.
A big surprise for Joyce on Friday was to see mom pull herself up in bed and turn herself to the edge, then put both of her feet on the floor!
Here are some pictures from Friday.
It was a great day.

mom's lunch

pureed potatoes, pureed spinach, pureed something meat

vanilla pudding and thickened cranberry juice

 mom and dad having a discussion

 mom having a physical therapy session with two therapists

 out for a walk

mom, Joyce, daddy

Sally came for a visit on Thursday afternoon

 Mom, me and Joyce

encouraging mom to eat a lot

 Joyce and mom

two beautiful ladies

Lena with her nursing student

A good day all around.
Lena is much more alert today. I think the medicine that was making mom so
dizzy and drowsy is finally getting out of her system!

Yes, Lena is looking rather thin. We are working on that!
I (Rosemary) am going to see my mom and dad tomorrow.

Update On Lena -- finally

Greetings friends and family
So sorry it has been so many days since there has been a post.
Not to worry. all is going well with Lena. She is improving every day.

We did have a couple of stumbles these past 10 days. We discovered that Lena is taking two medications that make her very sleepy. These medications are not ones that she must take, they are for her comfort.
One was for restless legs. We do not know who prescribed this medicine. Lena did not take this before her stroke!
This medicine had some side effects that interfered with Lena's alertness, and physical stability.
The other was a medicine for depression but it was given to her with the intention to alleviate any anxiety she was having with physical therapy.
Together, they were a bad mix. 

We had to take some bold steps this week to discontinue these medicines. We felt that the medicine that Lena was taking for the restless legs was actually causing some of her recovery anxiety, and also nausea which decreased her appetite. The combination of these two medicines together was creating a very drowsy sleepy situation and mom's blood pressure became extremely low. So low, her physical therapy sessions were cancelled completely!

So, we are moving ahead now. Hopefully we will continue to see Lena get more energy now that she is off of these medicines.

Lena is still having a feeding tube at night to supplement her calories. She can eat pureed food on her own and doing well with that. She also has one meal a day that is called "mechanical soft". That is soft food that mom has to work a little bit more in her mouth before swallowing, like small peaches, cottage cheese, and ground foods. She is doing well with this one meal that is supervised daily by the speech therapist.

Every day John is with Lena. They have had many opportunities to go outside for walks, John pushing the wheel chair.  Lena has enjoyed this greatly.

We will try to keep the blog updated more often. Really, we only had about 7 other things going on at the same time and also being intensely involved with Lena, and helping John manage the household at their home. Everything is going so great.
Thank you so much for the continued prayers.
We really appreciate your devoted attention.
I promise to have more photos in the next post.
Love always, Rosemary

ps: I am typing this post because Christina, the lovely daughter of mine that started Lena's Recovery Blog, --- went on a cruise, on a boat. She is having a fun time.

Other Sunday 4-14 Notes

A few other things from my perspective I wrote about on Sunday but forgot to post:

- Grandma had some good moments and some depressed moments today; a little bit up and down throughout the day. I'm told she woke feeling kind of bummed, but Grandpa said a walk this morning was nice. She took a nap and was very happy to see Joyce, Andrei, and I when she woke, and was very chatty for quite awhile. In the beginning, she spoke a little less clearly than normal (clarity of actual speech was fine; but she would use some weird words from time to time or hesitate for awhile while trying to figure out how to say something), but as she became more awake she was more and more with it, happy to hear about the CPR/AED training I did yesterday (and we discussed changes in medical guidelines over the last several decades for awhile), hear about what Jason was up to, and Andrei's scouting stuff... but then she would start to get in one of those moods where she was acted like she wasn't sure how much better I can get, and how-can-you-be-so-sure-of-that. And when we helped her get into her wheelchair for an afternoon walk, there were some complications (we forgot to undo her food tube before helping her move to the chair and at some point it came undone, made a little mess... and then it was a three-person operation to adjust her pants which in all the scooting to the edge of the bed had twisted and ridden up so high Joyce thought they were shorts or pedal pushers.. and Grandma had a moment where she kind of whimpered about what "an operation" this was and felt discouraged "having to live like this," but we were able to encourage her away from maybe crying a little by reminding her that this wasn't it and that every time we see her she's improved, and that we love to help her in her recovery, etc. And then we went on a walk and she was a little bitt cocky again. We asked her about things she might want to do in the future and she said things like, "Well who SAYS I wouldn't be able to go [to the Annapolis Greek Festival this June]??" or "Well. I can do those things. It's all in your head!" So, up and down today.

- At some point primarily Joyce and Grandpa had a talk with Grandma about maybe trying an antidepressant -- this was while Grandma was in a bit of an ambivalent mood. She reiterated her spiel about "medications are the last thing I need," but understood a bit that an antidepressant might help her have more positive days and that would be helpful to her healing, and that she did not expect physical side effects and only expressed a concern for the mental side effects (I think she was afraid that they might affect her "personality")... but ultimately said (at that time) that she might be willing to try it. I'm not sure how convinced she was of this and don't know she would feel the same way if you asked her about it tomorrow or the next day as she was in one of those "You have to do what you can" and "It's worth a try" and "We can see what happens" type moods, but considering her typically strong anti-medication stance, I think this is worth noting. I don't recall what the doctors have recommended about that, but I do know that that antidepressants are not unusual in the course of stroke recovery because they do help in coping with discouragement, etc. But then, I think some of us know from experience that some antidepressants can make you feel a little flat or weird... *shrug* Guess we'll wait on that one.

- Still very good to remind Grandma of goals. She feels confident she will attend Elizabeth's wedding. She looks forward to a day when she can go by to see the house, but expressed some concern about getting the wheelchair over that step in the front sidewalk. (I was surprised she remembered it had a front step; I definitely did not!) She thought the idea of having a picnic on the rear lawn of the rehab center would be fun. She does look forward to being able to go home and cook what she wants (She definitely questions the nutritional quality of the meals she is given at HHRC) and she said she sort of missed having a glass of wine with dinner (I told her when she gets home and can have wine again, that first glass is going to be SO GOOD and she laughed and agreed about that, haha.)

- There was some discussion in subsequent emails among relatives about Grandma's likely feelings of lack of CONTROL, and I completely agreed.  I tried to do some things today that would help her feel more in control.  Had her choose what color sweater to wear when we went out (pink is springy, but she liked the idea of wearing the purple one because I mentioned Dolley liked red and purple and she was wearing a red tee shirt), and when we went for our walk I made her choose what direction we went in.  Giving her choices helps her feel more in control of her fate and less like everything is decided for her.  This is something they teach you to do when helping people who are depressed, too -- even just making them decide simple things like what to wear or what to do (go for a walk, or stay inside and talk some more) can be even a little bit empowering.

- We also talked with her a bit about maybe seeing if we can adjust her breakfast menu, since she doesn't like things like eggs and prefers bananas and yogurt for breakfast... Adjusting what foods she gets might help encourage her to eat more of her meals. :)


- Grandpa is the most wonderful, sweet, encourager ever. Seriously. He is so, so good. :) I just wanted to hug him all day!  (My favorite part was we were on a walk outside and Grandma started to hang her head at some point, so Grandpa said to her, "Keep your head up, Meik*! The Queen has to keep her head up high, not looking down...!" Adorable.)   (*Meik is Grandpa's nickname for Grandma; it comes from the Dutch word for a little girl.)

Overall an ok day. :)

Christina's Sunday 4-14 Pictures

Lunch

Happy to be in the sunshine!

Found a forsythia bush to pose with -- Grandma struggled a moment to remember the name of them, but did recall that they have several of these bushes on the side of their house.

Cute chat with church friend Julie, who has been at HHRC (nursing home portion, not rehab) for two years.

Sunday 4-14 with The Purple Ladies

Grandpa's update:

Lena started the day in a depressed mood, but Andrei & Joyce & Christina, as well as the nice weather managed to cheer her up. 

She did not eat much at breakfast, but commented favorably on the lunch & dinner. 

Thanks very much, Joyce & Christina, both Lena & I appreciated your visit and your help very much and Andrei, you are always one of grandma's favorite people to see!

** A reminder from Christina: If you click on the pictures they will open in a large slideshow view so you can see them better. **

Lunch: Beef, mashed potatoes, peas, and in the dish: dessert (marble cake, pureed).  Grandma has about the same meal as others at HHRC, but hers is just pureed.

Note that we're all wearing purple -- completely unplanned!

Visiting Julie (friend from church who has been a long-time patient at HH rehab) -- Grandma was surprised to learn Julie is only 66, yet has been at HHRC for two years, and yet Grandma is 90 and will probably eventually walk and be sent home!

Dinner: Chicken (or Turkey?) salad, beets, tomato soup, and I'm not sure what was in the small bowl. Apple sauce maybe.

Thursday 4-11 and Pictures

Some news I forgot to include from last Thursday. From Grandpa:

When I came in this morning about 9:00, mom was happy to see me, but complained she had been awakened at 6:00 ("That's the middle of the niiiight!") to go to the doctor. She claimed she had gone there, but as the wait was long she had given up & gone back. 

Anyhow she claimed also that at breakfast she had eaten a whole banana! I could not believe this, but later saw the speech therapist who confirmed that this was true! The therapist said that this was quite a milestone, but she stressed that such eating of rather solid food should only be in her (the therapist's) presence only. 

Then mom settled back in a rather noncomittal mood, leaving uncertain where the day would go, but i tried to liven her up with some music, and when the therapists came she agreed to be cooperative. 

After some exercises in bed with the one therapist (lifting the arms, and also with a 2 lb weight), they helped her move into the chair, and she helped rolling the chair to the exercise room where they had her stand up in a contraption she had been in before. She seemed pleased with the accomplishment but again scared them with stating she felt dizzy and breaking out in a sweat. However, her vital signs were OK and they took her to the middle of the room for a rest while they observed her sitting there with a rather absent look. However, she then suddenly broke the spell by saying, "Can anybody tell a good joke?" I then suggested she sing something she had composed, which she did, a happy tune. 

The PT (Annabelle) then worked for a while with her on exercises of her right leg, and indicated she was satisfied. The PT asked me however to discuss with Dr Chopra this frequent almost seeming to black out. 

Mom & I then sat in the room for at least another half an hour until she asked to be back in the bed which seemed deserved after the good work she had done. 

While we sat there, this doctor W (?) came by and said that he was making a slight change in her medicine, so as to correct her soda level which he stated was 129 and should be <135. 

All in all this was a good morning.

Although not overly enthusiastic, Lena agreed to be moved to the chair (4/11/13)

With her left arm & left foot she helped move the chair to the exercise room 

Resting from having stood up (assisted in special contraption)

Practicing lifting right leg

Lifting right knee

Saturday 4/13 and Pics

Per an email from Grandpa:

• When he arrived, Grandma still had her breakfast in front of her.  She had eaten some of the oatmeal but had no banana as there is no speech therapist on weekends. She seemed to feel good, and when the nurses came to clean her up she agreed readily to be transferred to the chair.
• Jonathan arrived, a favorite physical therapist, and this morning he did two new things with her.
• "He had her work on the NuStep bicycle. She was at first hesitant, but improved as she went along. As you all know, mom is often a kind of combination of being negative and a moment later cocky. When he installed her in that machine she gave her usual talk of her right leg not having been any more of use even before the stroke. But once she got going, she got better & better, and then said that such machines were below her dignity. Anyway she did more than 10 minutes on it."  -- Grandma is so funny!!
• "He had her stand up between 2 bars where she supported herself with her left arm on a bar. At first when she did this, she acted like she might faint, an experience other PTs have had with her. However she recovered almost immediately and indicated that she had had a tremendous fear she could not do this. But she tried this a second time and did better."
• After all this she was tired, and about 11 she went back to lie on her bed and take a nap. 
• Today is kind of cool, so we'll see how she feels this afternoon about going outside. 

She did more than 10 minutes

Standing up with help by Jonathan

Friday 4/12 and Pics

Per an email from Grandpa:

• Nothing very exciting to-day, but progress seemed to continue.
• Grandma had a banana and a drink for breakfast. :)  I know she likes bananas for breakfast, so she's probably pretty happy to be able to eat them again.
• Occupational Therapy came in the morning.  Grandpa says Grandma "was not overly cooperative," for instance when the PT wanted her to count her repetitions of an exercise, she was reluctant to do so, saying, "that's not my department, that's my husband's department..." Always a feisty one, she is.
• Grandma spent the rest of her morning in the wheelchair, and Grandpa wheeled her around the facility, but not outside since it was raining.  By about noon she was tired again and wanted to rest in bed, so Grandpa left for lunch.
• Grandpa came back to find Grandma had 2 visitors from the church "circle" Grandma belongs to.  
• She didn't eat very much of her lunch, but she is getting at least some of her daily calories by eating on her own, so this is great progress. :)
• She had some Physical Therapy later in the day (leg bending, lifting her behind, etc.) with Annabel, and did well. Yay!
• In the afternoon Grandma was complaining of being bored, and thankfully it had stopped raining, so Grandpa took her around outside for an hour and a half or so!   Wow!  Grandpa reported that this long second "walk" shows Grandma's increasing ability to keep herself sitting up and alert.  Hooray! 
• Someone told Grandpa later that a neighbor, 95 year old Gene across the street, who is in a wheelchair, accompanied by her care taker, Brenda, had visited Grandma on Thursday midday.  Grandma confirmed this information when Grandpa asked her -- I would think this is good progress with Grandma's short term memory, since previously she has had trouble remembering days or even hours earlier.

Monday and Tuesday Pictures from Grandpa

Monday - Grandma with therapist & nurse aide

Tuesday, being delivered at Sajak Bldg for appointment with Dr, Farhadi, neurologist.

Lena at HH Rehab back from visit with neurologist Dr Farhadi

In bed after tiresome day, entertaining PTs and others with a song, which she stated was her own composition

Some other notes from Grandpa not covered in my mom's message:

• Both yesterday & today, Grandma was too tired to do therapy in the exercise room, but she was still able to to have good sessions in her bed, practicing sit-up, and moving her right arm & leg.
• The neurologist also stated that the pain of which she has complained in her right thigh muscles, etc. cannot be caused by the stroke but probably results from not having used those muscles much in a while (I believe this answers a question Lizzy once raised).
• The doctor was very pleasant and the transportation by HH vehicle was very professional, but in Lena's current condition this was relatively a pretty tiresome experience, and she was happy to be moved in her bed after this was over.

Tuesday 4-9 Pictures from Rosemary

The delivery van. Had a nice wheelchair elevator on the other side, very snazzy.

Mom settled in her snuggly bed.

Also from my mom's report: "After mom's PT session, she started singing a nice song with no words. It was pretty, it sounded very spiritual.  She said she made the song up a long time ago. Mom still has a very good voice.  She said this song was a happy uplifting song. That made me very happy too."

Tuesday 4-8 Update from Rosemary

Today's update comes from my mom/Rosemary:

• Mom went straight to the hospital since she figured they would still be in this meeting with the neurologist and ran into Grandma and Grandpa in the hallway! Ha!
• Grandpa said the doctor was nice, but they did not have any brain scan, and that they just came to visit the doctor and talk about her progress?  Hm, we thought there would have been a CT scan.  (Grandpa later said in an email that when he asked the doc said they could do one, but he didn't see the need.)
• The doctor had showed Grandpa the previous brain scans and told him that Grandma had a small bleed and she was going to recover from this, quite possibly fully recover.  What FANTASTIC news!
• He also prescribed one baby aspirin a day, since Grandma is not to go back on Coumadin after all of this.  He wrote a prescription so that it could be administered at the rehab center.
• Because Grandpa wasn't sure what he understood/remembered from the meeting, Mom had the receptionist in the neuro office agree to send Grandpa a copy of the doctor's visit notes to Grandpa, so hopefully he'll get that in about a week.
• Grandma was tired upon returning to HHRC, so Rosemary and Grandpa left for lunch so Grandpa could nap awhile.
• When they got back, Grandma was already under attack of the physical therapists. Two of them working with Grandma.  Her right leg was hooked up to the stimulator leads and every time they started firing on her muscles she had to extend her knee.  She did okay. She did not really enjoy that exercise...
• Then they put hand weights on both sides: 2 lbs on her left, 1 lb on her right.  Bending and flexing with every last ounce of energy she had.  Those therapists are great and do not take any excuses. Grandma told them she never uses her right arm, or she uses it for different purposes and she did not understand why she needed to lift weights. haha
• Then the therapists flattened out the legs portion of Grandma's bed and sat her up. She then had to pull herself forward, up, keep her chest and head up, THEN with her left leg and foot, she had to push her right leg and knee out off of the bed, so she could turn and sit on the side of the bed. That was a lot of work. The therapists supported her but they made her do it.  She did well. She worked at keeping herself balanced, both feet on the floor.
• Then she got hot and clammy (her room is boiling hot and dry but she claims she is cold) and the therapists put her back in bed.  They both commented that mom did really great.
• Rosemary noticed that Grandma did not eat much of her lunch.  She did eat more than half of her chocolate pudding.  (No surprise; she's a "chocoholic"! -Christina)

WHAT A GREAT DAY!  :D

My mom plans to return to HHRC on Friday.  I think Joyce will be there Saturday, and I hope to make it out on Sunday. :)

Monday 4-8

Update from Grandpa:

Monday morning Mom had very little energy. She said she was "out of it". When the therapists came, she told them so.  When she was moved into her chair, I volunteered to take her out on a walk outside in the nice weather (about 70 degrees & sunny) in order to try to liven her up. We had a really nice walk but after less than half an hour she wanted to go back saying she was tired & once in the room she said she was "collapsing" & wanted to go back to bed. When the therapists saw this situation, they agreed to try later. She then went to sleep & I went for lunch.  

About 2 PM I came back and found that she was a lot more peppy. Soon one therapist showed up & decided to work with mom on the bed, things like moving her leg muscles, sitting up, etc. However at some point this was discontinued when the PT noticed that mom was breaking out in a cold sweat (her cheeks & neck became quite clammy).  

After mom rested for a while and also had a visit from pastor Bill of our church. During his visit a PT named Jenny showed up with that muscle stimulator that she worked on mom's left arm for 20 minutes, and after that she also had mom do some sitting up until again she was tired.This PT stated that mom has made some good progress. 

Also I was told today that mom has been promoted in her eating, in the sense that she has started on the pureed diet where she gets 3 spoonfed meals a day which she eats under nurse supervision! In this connection, a sign on the wall behind her bed, stating that she was an NPO, was removed.

Great update!  Sounds like Grandma is getting a bit better at fighting the sleepiness during the day.  Every day, little by little, we see progress.  Wonderful to hear as always.  <3

Sunday 4-7 Update from Joyce

Sunday's details were from Joyce, sent to me late Sunday evening.

• Joyce arrived around 2 when Grandma was getting cleaned up.  She was in a great mood, very alert and smiling.  Was excited to see Joyce and said, "We were just talking about you!"
• The 2 aides with Grandma love helping her, stating that she constantly chats about everything and makes them laugh.  One nurse commented on how sweet grandpa was with Grandma.  "This is how you hope it is when you get old," i.e. that your spouse is there for you. She thought they were very endearing.
• Grandma spent a lot of time outside, going all the way around the rehab center, sitting outside in the sun. There was a gentle breeze and wonderful sunshine. They went to a particular part of the road where Grandpa reminded Grandma that they always would walk this way to get to the rehab and walk around. Grandma recognized this area, and assured them that she could remember where the house was in relation to where they were. Wonderful!
• Afterward, they hunted down a lady on the second floor (more like nursing home on that floor) that Grandma knew that was there for a few years.  They talked for about 15 minutes, just glad to see each other.  The lady definitely remembered mom, and when she asked about mom being there, mom just said something like, "Oh I had a problem but I'll be walking out of here pretty soon!" Joyce says she really did say something very much like that. Ha!
• After this visit, Grandma was starting to get tired, so the nurses put her to bed to rest for a 15-20 minute nap.  
• Later, Dr. Chopra came for a visit. Here's what he had to say:
• Grandma's had a few UTIs since the catheter was in, and now out. He has once again put her on an antibiotic for that, but felt she shouldn't have so quickly gotten that infection, so soon right after the other one. We'll watch this. Might need a urologist to look into this further. 
• Mom was trying to follow this conversation and the doc REALLY noted how clear and coherant mom was. He stated those UTIs really make her more muddled, so that's probably part of why she's had many more "good" days late. 
• Doctor also confirmed the neuro appointment Tuesday is probably an evaluation and maybe a CT scan to follow up.
• Grandma said that she gets cold at night, so Joyce was going to leave a note for the nurses to make sure she gets extra blankets.

Sounds like great news all around.  I'm sure Grandma loved visiting that lady upstairs. As social as she's been, visitors must really make her day, too.  If anyone asks how to help, I would say to visit her, or send her mail, or maybe one day we can see about setting up video chats on Grandpa's computer. Wouldn't that be fun!

Sunday 4-7 Pictures

One of her favorite nurses-aids had put her in the chair 

Enjoying the sunny weather

Visiting a friend who has been a patient in this Rehab Center for years

Back outside again 

Just relaxing in the sun for awhile (Grandpa's Subaru in the background)

Posing with Grandpa's Subaru

Saturday 4-6 "Mom's Best Day"

From: GRANDPA

Subject: 8 iPhotos 4/6/13 at HH Rehab
Date: April 6, 2013 9:08:37 PM EDT

To me this was perhaps mom's best day.

It started with the arrival of Jonathan in her room. He and mom bond very well together and he inspires her to try her best. He took her outside (the weather though sunny, was nevertheless kind of chilly so we bundled her up). He had her find various things such as a yellow bush, a white truck, a bird feeder, etc. He also had her do some exercises such as turning her head, pointing her right foot forward, etc, small advances perhaps, but boosting her feelings of accomplishment, making her remark various times that she was "amazed" she could do these things, which she could not do before. After she was finished with Jonathan, we wheeled her around for a little longer outside, until she noticed she was getting cold, so we then took her around inside for awhile, until she indicated she was ready for a rest. In the meanwhile, Rosemary had arrived and pretty soon after that the three of us left mom to take a nap & we went to the house for some lunch & moving Elizabeth's stuff out to the car as she had completed her one week's stay with me, as my care taker, cook, laundry & dish washer operator, chauffeur, telephone operator, grocery shopper, and advisor, in addition to joining with me in our activities at that rehab center, interacting with mom & the personnel there. (There were several evenings that both Lizzy & I were thoroughly exhausted, & in addition she had to do her work for her job).

After we came back from lunch, Mom had rested, and she was able to enjoy various Utube music videos on her iBook & on Rosemary's mini iPad.

Pretty soon after Rosemary & Lizzy left to return to Virginia, Sally Baldwin arrived, & mom spent a happy & animated hour & a half with her, as Sally is also one of mom' s favorite people.

When I left Mom it was about 5:30, and before I left she suggested I go to church tomorrow morning.

I thought today was such a good day, because she was alert, happy, & optimistic all day with positive thoughts about her progress, and the real possibility that she may lick this thing eventually.

Working with therapist Jonathan (making her find various things such as "yellow bush" 

Sticking out her right foot

Pointing with right arm

Relaxing back in bed

Music videos on Rosemary's iPad

All smiles!

Sally visiting

Sally brought flowers & magazines for Grandma