Monday 4-01 Pictures

Getting out of bed to go into the wheelchair 

Combing her hair

In a device to support her as she re-learns to stand.

Standing up!! Grandma was amazed that she could do that. How awesome it is to see her big smile!

Ate a little bit of everything with the therapist

Drinking from a cup

Start of April Brings New Healing - April 1

Hello, folks - as Christina mentioned, I (Lizzie) am staying with Grandpa for the week and am your humble correspondent from Annapolis, MD. Below are details from yesterday, Monday, April 1st.

HIGHLIGHTS

• Grandma shared that she feels very sad sometimes
• Grandma saw a Physical Therapist, Occupational Therapist, and Speech Therapist
• With help, she sat herself up in bed and shifted into the wheelchair
• In the Occupational Therapy room, Grandma stood up for almost 10 minutes total!
• After a visit with the Speech Therapist, Grandma ate independently
• The Speech Therapist would like to start Grandma on a pureed diet TODAY (Tuesday, April 2)
• Grandma spoke with a representative from social services
• Grandma shared that she is not too impressed with the rehab center nurses

Details:

Yesterday morning, as shared by Grandpa in his emails, we noticed that Grandma was feeling a little down yesterday morning and again in the afternoon. Some of the things Grandma said are that she has trouble believing that she will gain strength in her right leg and right arm; that she sometimes feels that completing this therapy "has no purpose."

"At this age, I need to accept that it is just the way it is," she told us. She also said that many ladies at Heritage Harbour neighborhood do not drive or even walk; she seems accepting that this will now be her lifestyle - however, Grandpa and I gently encouraged her that this is not certain and that she is making miraculous progress! Grandpa is a great encourager.

To ensure that she was perked up for the anticipated therapy visits, Grandpa played some wonderful music, which made Grandma smile. She even sang along softly but also dozed a bit in bed, resting. Grandma knew it was Easter Monday and I asked her what she did on Easter Monday when she was my age. This question seemed to spark some enthusiasm and she explained and remembered happily.

Grandpa tells me that in the morning, the Physical Therapist installed a special machine on Grandma's leg that senses pathways to the brain. Our understanding is that this machine is supposed to stimulate these pathways and muscles to help Grandma move it more easily, and regain mobility in that leg. Grandma did not like this machine very much, and said it was painful.

A few hours later, 2 occupational therapists came and helped Grandma up in bed. They encouraged her to straighten her shoulders and back and lift up her pretty head. Grandma seemed a little doubtful that she could get out of bed and into the chair, but she did it with help. I saw her support herself with her right arm and her left leg helped her to swing into the chair. Grandpa and I cheered her on!

She seemed pretty happy in the chair, and we continued to encourage her to keep her head up. In the occupational therapy room, she saw many other people at different stages of recovery rebuilding their strength. Grandpa and I both think this was a good thing for her to see.

These therapists rolled her to the far side of the room in the chair to an apparatus used to help her stand. They extended a strap on her bottom and across her hips and with help and encouragement, she stood. These therapists took her blood pressure while she was standing up and it was in good shape (I think it was something like 138/80). They had her stand with her arms supporting her for 5 minutes, then sat her down in the chair. Then they repeated this process. Grandma did great - she began apprehensively, and repeated "I just cannot believe it," a few times. Returning to the chair, she seemed perked up. We helped to push her back in the room.

Grandma shared many times yesterday that she notices that her brain and body are almost severed - Her brain knows what it wants her body to do, yet her body isn't listening and doesn't have strength. I shared my experiences with my foot surgery and how atrophied and weak my foot and leg were after 1 month of not getting out of bed. She seemed surprised and encouraged by this.

Grandma and I talked while she remained in the chair in her room for a few minutes. Grandpa got a drink. During this time, Grandma shared a lot of her fears and said that she didn't feel positive that she would regain her strength, repeating "this has no purpose." I told her that we all loved her so much and that it was normal to feel scared - but that we would be with her every single step of the way. Grandma said she's almost glad to have had this stroke at 90 years old, because to have had one earlier would have been more difficult to adjust to a new lifestyle, and that she would have had to forgo a lot of activities much earlier.

I held her hand and brushed her hair, and then she became exhausted and had some trouble holding her head up. I called some nurses to help her back into bed before Speech Therapy.

The Speech Therapist brought a big tray of food - pureed chicken pot pie, water, juice, and milk with a honey-like consistency, mashed potatoes, and pureed peaches. She fed Grandma 1 or 2 times and then Grandma began eating independently. The therapist put 2 fingers against her throat to be sure the muscles were working to help her swallow. The reason why Grandma cannot drink more watery things is that those liquids move more quickly in the mouth, and particularly to the back of the mouth. This increases the risk that it will go down her airway.

The therapist noted that Grandma continues to build the muscle in the back of her throat that helps her to swallow quickly. "It takes me 3 swallows to get a bite of food down," she said. Grandma did really great, and she seemed proud of herself at the end. We were so impressed. The ST would like to start Grandma on a pureed diet TODAY, working her up to a soft diet perhaps by next week!

Grandpa and I left for lunch shortly after while Grandma began to doze off.  In the afternoon when we visited again, Grandma seemed a sad. She shared that the nurses are not too responsive, and that this is particularly true overnight. We encouraged her to press the red button at night to call the nurses that way. Grandma did not seem too hopeful that this would solve the problem, and said she had tried this before. She also said that the television has no stations that she can relate to (I believe many of the stations are from Baltimore instead of Washington DC or Annapolis), and this is frustrating.

I ran out to the nurses station and asked who was on duty now, and who would be on duty overnight. Apparently 5 nurses are on duty in the daytime. Their names are listed on the white board near the nurses station. Their shift ends in the evening around 11:00 pm. I asked how patients can contact the nurses, and if the nurses routinely check in on them. The head nurse affirmed this, and said they make regular rounds. When Grandpa and I shared this with Grandma, she seemed doubtful. She shared that she was not too impressed with the rehab center. Grandpa responded that this was good motivation to get better and get home as soon as possible!

We left Grandma around 6:00 pm as she settled in for a nap. We agreed that the day had been filled with both accomplishments and challenges, and that it was very important to help Grandma stay positive.

In the evening, I think both Grandpa and I were feeling a little worn out and deep in thought. Jerome made a special surprise visit around dinnertime and we enjoyed a good meal together at home. I think this cheered us up!

Easter 3-30 Pictures

My mom made Grandma another "sweater" out of a sweatshirt. She loved it!

Grandma immediately rolled up the ends of both sleeves, by herself! :)

We were short on chairs so Grandpa sat in Grandma's wheelchair. He thought it was kind of nice to wheel around... :)

Listening to YouTube videos of Heino and André Rieu...

In the later afternoon Grandma was complaining about being restless, so we got Grandma sitting up for a little while and had her work on holding her head up and stretching her arms.  She did great despite being pretty tired and it was fun to do a little "family rehab" together. :)

A Happy Easter!

I went out to Annapolis with my mom and sister today; Joyce and Andrei joined us soon after. 

First impressions: I had not seen Grandma in two weeks and I was IMPRESSED.

• Grandma was supporting her head, turning her neck and speaking much better (helped that she had her teeth in)
• She was much more alert and was alert for a longer period of time than last I saw her.
• Grandma followed and joined in conversations much more like her "normal."
• She seemed to have much better control of her arms and legs, but she did complain that it was difficult on the right side, comparing it to when your arm is very asleep; you can move it, but you don't have as much control or feeling.
• She cannot yet sit up on her own, but she is able to push her torso up from the bed a little if someone is trying to help with a pillow or the bed. And she can hold herself up in a seated position (with some assistance, once you've turned her on the side of the bed and helped her up). Two weeks ago, she was not doing this; now they're talking about having her try (supported) standing!

Some challenges I still noticed:

• While Grandma was much more alert on Sunday, she did tucker out after a couple hours of lots of stimulation throughout (6 guests in the room, YouTube music videos, "dancing," conversations, etc.) When she was tired, she was a little more "mumbley" like she was when I saw her two weeks ago, but she was a bit more "with it" until she started to fall asleep. So even her "good days" seem to be improving gradually. :)
• Grandma acknowledges that she seems to have memory and alertness issues.  
• She says she only remembers "episodes" of the last month and I'm not sure how far back she can remember since the stroke. I don't think she remembers the stroke at all; sometimes she can't remember why she's in the rehab place. I'm pretty sure she can't remember much if any of her time in the hospital.
• Grandma realizes that she seems to go in and out with her alertness. She says that she doesn't always know it is happening, though, but she is quite aware of the fact that she is sometimes "off the map" as she says.
• While she has very good memory of things from her past, childhood, even before the stroke, she has some confusion from time to time about details of the present - the year, her age, etc. When you tell her the correct information she'll hesitate with it, even after you've walked through the math (2013 - 1923 = 90 years old).
• She has some trouble reading smaller print that she didn't have issues with before.  She may need a new prescription, but it could also be a little neurological. 
• Grandma wasn't sure why the nurse came in to check her blood sugar at some point and didn't realize she was being tube fed ("I haven't been eating anything in days, I don't know why they do that").  Upon explaining that to her, she understood the whole thing, but I'm not sure how much of it she would remember a day or even a few hours later.

Grandma's mood:

• Grandma says she's kind of lonely in the rehab place.  I'm sure this is a combination of not remembering family visits (as I've discussed before, she doesn't always remember when people visit, even later the same day) and not having really anyone to talk to when family leaves; she can't exactly call in a nurse to chitchat with her when she's bored, and you know Grandma likes to talk, so this is surely difficult.
• She says the rehab place is ok, but that she "might have only another year to live and it's kind of a sad way to live it out."  When we tell her that she's making great progress and eventually will be able to go home, she seems encouraged by this, but she doesn't always remember on her own that is the goal, thinking that this is it, this is all she'll get better.  Thus the importance of constantly reminding Grandma how she is doing.
• Grandma says she misses outside.  Again, we just tried to focus on the positive and remind her that once she is capable of sitting in a wheelchair for awhile on her own and supporting herself, perhaps she can be taken outside in the wheelchair, and she seemed to like that idea.

So all in all, a great Easter Sunday.  I was really glad to see Grandma having a "good day."

Elizabeth is staying with Grandpa this week and will probably be reporting on the blog a bit while she's there.  There is also a "Care Conference" with the doctor on Tuesday that Elizabeth should attend so it will be interesting to see what comes out of that.

Saturday 3-30 and Pictures

• Grandma was kind of sleepy on Saturday.
• Shelley and Sally visited for a couple hours in the afternoon which Grandma enjoyed, but Grandpa reports that she kind of dozed off several times during their visit.
• The Easter Bunny came to visit! (See photos below.) Sally also brought Grandma a really cute stuffed animal bunny.
• Physical Therapy came in the late afternoon, around 5 PM.  This was a really nice guy named Jonathan; Grandma seemed to really like him and enjoyed talking with and working with him. He had her turn her weight from right to left, and even helped her sit up for awhile. Grandpa thought she did really well even though it wore her out.
• Grandpa discussed the boot on Grandma's foot with Jonathan.  He said it was the best solution, but did not elaborate on what else could be done. Maybe the weekday therapists will have some information on this.  
• Since Grandma was tired from her therapy, Grandpa left around 6, and a nurse got Grandma ready for bed.

Great Website on Stroke Recovery

My mom/Rosemary shared this website on stroke recovery, especially the section about left brain injury patients (that exhibit the right-side weakness that Grandma has).

"Emotional and Behavioural Changes After Stroke"
by Stroke Recovery Burlington, a stroke support organization in Canada.

I found some of it to be so spot-on that I think it's worth quoting directly here:


______________

Following a stroke, the patient's anxiety, fear, and frustration are enormous. Many stroke survivors initially suffer confusion that makes it impossible to do the simplest mental tasks. They often feel helpless and dependent, and their sense of self-worth is diminished. It is important to understand the survivor's limitations and allow an appropriate time for recovery. Self-worth, confidence and enjoyment of life will gradually return.


Encouragement is an extremely important motivating factor for stroke survivors. Caregivers should avoid being critical. While inappropriate behaviour should be pointed out, nagging tends to upset and anger stroke survivors, and discourages rather than encourages effort.


Determination is essential in overcoming the effects of a stroke. Patients must be willing to adapt to the disability and be convinced that by therapy they will improve. It has to be stressed that the will to recover does pay off. Nothing helps raise the body and spirit of the survivor of a recent stroke like seeing how their own hard work helps their recovery.


On a survivors return home, the following guidelines will encourage a positive recovery.
- Set attainable goals ­ the road to recovery is built of simple achievements.
- Involve the survivor in daily activities and routines.
- Encourage independent activities, while recognizing the survivor's limitations.
- Try to maintain social contacts within the family and community.

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Left Brain Injury (right-sided weakness (hemiplegia) )
Those with left brain injury and a paralyzed right side are more likely to have problems with speech and language. Apart from language problems, these individuals tend to be cautious, hesitant, anxious and disorganized when faced with an unfamiliar problem. Many of those with right hemiplegia need frequent assurance that they are doing okay, with lots of immediate positive feedback. Breaking tasks down into steps and practicing often will aid learning.
______________

Depression
Depression resulting from a stroke is one of the most difficult factors for a spouse and family to deal with. A certain amount of crying, though upsetting to the family, may be a natural and normal emotional response to the stroke survivor's greatly changed circumstances. However, chemical changes caused by stroke may result in deeper depression and apathy, with the survivor appearing passive and detached, a state that will usually improve with time.

______________

Memory Deficits
Almost any brain injury, however slight, may cause memory problems, contributing to language, spatial-perceptual and retention span difficulties. For most stroke survivors, remembering old information (from before the stroke) remains easy, while new learning is difficult.

______________

Generalization
Some stroke survivors are capable of learning new information, but are unable to apply that learning to other similar situations (generalization). For instance, they may make safe transfers to and from a wheelchair while in the hospital, but are unable to once at home. They may become very sensitive to and often fearful of changes in their environment, and will thus benefit from, and be comforted by, an effectively established routine.

______________

Sensory deprivation and over-stimulation
Many recent stroke survivors are overwhelmed by too much stimulation. When visiting, go singly or in small, quiet groups, and speak one at a time.
Conversely, some stroke survivors may have diminished sensations of touch, pressure, sight or pain, causing them to suffer a constant level of sensory deprivation, leading to psychological stress. The quiet of night may compound this-a radio playing softly or a soft light left on may help.

Friday 3-29 Pictures

Clean, dressed, and ready for the day!

(Snazzy socks courtesy of my mom/Rosemary.)

Getting transferred to the wheelchair before therapy... 

Sitting pretty in the wheelchair, ready for therapy.

And back in bed after the "unresponsive" episode.

(Note the boot thing they have on her foot.) 

Friday 3-29

Grandma was pretty alert in the morning.  Nurses came in, cleaned her up, got her dressed, put her in the wheelchair in preparation for therapy, everything doing well.  She was waiting for therapy, watching tv, and then Grandpa said the next moment she was slumped over and sleeping, another episode like before where she was unresponsive. Nurses and therapists came in, put her back in bed, and ultimately Grandma awoke and said she didn't know what happened or remember anything! Physical therapy was cancelled for the rest of the day.

In the afternoon, though. Grandma was awake enough to have some food with the therapist (some on her own, some fed to her).

At some point they strapped some boot thing on one of Grandma's feet, to protect her from getting a sore on her right heel-- the restless leg issue is still present and they don't want Grandma to develop a sore from rubbing her food on the bed.  As you can imagine, that thing started to bother Grandma and she wanted to take it off.  Grandpa got someone to come in and talk to her about it and explain its purpose, and was Grandma saying things like the sore didn't bother her and that she was 98 years old** (?!) and has maybe only a year or so to live, did not want to put up with this contraption, etc, etc. So the two argued for a bit over this and Grandma apparently held her own until ultimately Grandpa intervened and convinced her to at least keep it on through the weekend.

An hour later, Grandma asked Grandpa what the year was and how old she was and where she was. Grandpa says, "When I gave her the info, she first argued I was wrong and I think she was not quite convinced when I left."

** The "98 years old" comment I think comes from Grandma's confusion about just how long she's been in treatment; the "year or so to live" bit is something she's said before.  Grandma has had some difficulty with remembering people's visits, things about her progress, how long she's been in hospital/rehab, etc.  We are hopeful that her ability to remember things will improve with time (memory issues are pretty common with stroke), but we'll just have to see how things progress.

A psychiatrist visited, and talked to Grandma about whether she had depression or trouble sleeping, indicating that he could give her medication that would help. Grandma explained that she does not like medications and later told Grandpa that "a psychiatrist is the last thing I need," and "wait 'til he is my age." Ha! That sounds like Grandma...!

No therapy this weekend, except some Physical Therapy with a guy named Jonathan. Grandma said, "Ok, we can do our own therapy," to Grandpa. Adorable.

Thursday 3-28 Pictures

Physical Therapy and Speech & Swallowing Therapy.

Thursday 3-28

It's been a busy week but I'll do my best to get some posts up about the last several days as soon as I can.  Here's last Thursday; I'll cover Friday and the weekend tomorrow.  -Christina

My mom/Rosemary visited this day.  She said Grandma was sleepy but not all out groggy like she is on some of her tired days.  

Physical therapy came midday and put some electric muscle stimulator things on Grandma's legs to help her leg muscles work again.  She did not like it and that it felt terrible, trying to tell the therapist to take them off...!  After about 20 minutes (while mom and grandpa tried to distract her from the irritation of the treatment), the therapist took grandma to the physical therapy room, where they worked on a number of upper body exercises in front of the mirror..

Mom reports that while the nursing staff at the rehab center are passable, the physical therapy staff are excellent and very sweet with Grandma. This is great!

Grandma occasionally has a bit of trouble with remembering the year, her age, how long it's been since she had the stroke, etc.  She apparently told one therapist that she has not used her right side (arm or leg) for 4 or 5 years... When you explain to her her error she usually understands but sometimes questions -- she asked Grandpa the other night her age and when he told her 90 she said there "was something not right" about that.

After physical therapy (about 30 or 40 minutes) they took her back to the room, she sat in the wheel chair awhile longer, and then asked to get back in to bed since she could not keep her head up for much longer. Grandma does not have the muscle strength to manage her right side very well, but it is improving... just after PT she was particularly worn out.

Again, mom moved the chairs to keep Grandma's attention on her right side to encourage her to use those muscles and develop that strength. 

Speech and Swallowing therapist came with a tray of food!  Pureed carrots, pureed beans and rice, apple sauce and honey milk [I'm not sure what this is... -Christina]. Grandma did great and probably ate about 1/4 of the food there including drinking a sip or two of the honey milk from the cup.  Yay!

Grandma does continue to have some issues with short term memory.  For instance, she will ask for something from the house (shoes, blanket), but when Grandpa brings it she asks, "What did you bring that for?" Also, while she may have a really good visit one day, she won't necessarily remember much the next day, which probably is a significant contributor to her feelings of loneliness. We'll have to keep an eye on this.  Apparently this is pretty common with a stroke where Grandma's was, but we'll have to see how this develops; hopefully it improves.

Grandpa has also mentioned that in a lot of pictures, Grandma looks just like she was before the stroke, which I think is due to Grandma regaining control of her facial muscles; you'll notice she doesn't have as much of the right-side droop as she had right after the stroke.  (Yay, good job Grandma!) But as Grandpa also cautioned, the pictures also could give a misleading idea of Grandma's condition.  She does pretty well, but she is still has a long road to get back to "normal."

Overall, a good day.  Subdued, but good. Hooray!