Saturday 3-16-2013 Pictures

A Difficult Day

[Written Sunday 3-17-2013. Again, it's been a rough weekend. Sorry for the delay... -Christina]

Elizabeth and her fiancé Jerome visited, as well as Joyce.  In the morning, they all cleaned Grandma and Grandpas house, vacuuming, cleaning the kitchen and bathrooms, running laundry, etc. so now the house is super clean which I'm sure Grandpa appreciates.  It's hard doing all of this on your own, especially when you're not used to handling these things to begin with.

The afternoon was kind of difficult.  While the gastric tube surgery went well, and Grandma was happy to have the visitors, my sister reported to me late in the afternoon that at some point Grandma all of a sudden started saying things like "I'm done." "I want to go home." [Not home to the house, but home to God.] "At this age, it's ok." [Kind of like, I'm ready to go, I've had a good life.]

Naturally this was upsetting, and they weren't really sure how to take all of this.  This isn't inconsistent with Grandma's previously-mentioned wishes (prior to the stroke) that she didn't want to live "hooked up to a machine," but considering Grandma's progress it was really hard to hear her go on like this.  I wasn't there, so I don't really know how things happened after this, but looking back the general thoughts going on that evening via emails and phone calls included:

• We know Grandma's wishes, and this is her decision, yes.
• However, it is kind of also our duty to be encouraging and help her stay positive while she still has a good prognosis -- and her treatment is still focused on recovery, not just "making her comfortable."  She is not dying and not being sustained merely by machines. 
• We should still have hope for all of this, and will have to see how she feels tomorrow and the next day... One day at a time.

So yeah.  Saturday was a rough day. I think we were all emotional wrecks, trying to process this information and figure out where to go from here.

I had a giant piece of greasy pizza from the grocery store for dinner, I just didn't care. But I felt a bit better later in the evening after I had some time to think and get back to focusing on what comes next. <3

One day at a time...

Friday 3-15-13 Pictures

Here, Grandma is reading someone's card.  

She could read the printed words, but had some trouble with the handwritten note... but then, even my mom couldn't figure it out entirely!

Grandma and Grandma really enjoy all the wonderful cards she's received. :)

Friday 3.15

[Sunday 3-17-2013] Sorry it took me so long to post; it's been a rough few days at work, home, and everything else so it's been hard to find time to sit down and write...  -Christina

Mom/Rosemary had a meeting with that Chesapeake Palliative Care (?) girl - Heather Travis.  She seemed utterly clueless as to what we've heard from the other nurses as to Grandma's progress, saying things that were really not true (saying things like that Grandma was not doing as well as the actual doctors have told us, etc.)!!  So strange.  In fact, I'm not even going to summarize anything she said since she was really off-base.  We're not really sure how she came by (whether she was sent by the hospital or not), but I personally suspect she was from some post-hospital-care facility and was trying to get us to transfer Grandma to their place so they could have our money.  How slimy!

ANYWAY!

After the meeting, Mom and Grandpa went back to the room and played some fun German dancing music and Andre Rieu videos for Grandma, and she really enjoyed this.  She was sleepier this day, and we suspect that some of the medications she is on have side effects that would be causing the sleepiness.  She is not on a ton of medications, mostly drugs for blood pressure but also something for her restless legs and Tylenol.  In any case, we hope to investigate that some more over the weekend.

While Mom and Grandpa were at lunch, this really sweet care technician came by. Mom says she had cute flowery tattoos and said she was "really sweet, so so kind" with Grandma.  She gave Grandma a bit of a BATH!  Cleaned her up really well.  "Mom looked great!"

After lunch, Mom and Grandpa found more YouTube videos of Grandma's favorite music -- Heino, Gerard Cox, Andre Rieu, and Freddy Alexander...  (Thank goodness for free wifi in the hospital!  This has been wonderful.)  Grandma was sleepy, but she really enjoyed the music, smiled, and mom even took her hands at some point and "danced" with her. Ha! So cute.

The hospital folks talked to Mom and Grandpa about Grandma's nutrition. Up to this point, Grandma was receiving her nutrition through a nasogastric tube (NG tube), the tube down her nose and throat to her stomach.  This tube is kind of a temporary fix (inserting it isn't a surgical procedure, just gets the job done), and it does make things a little more difficult with swallowing, could make some things irritated, etc.  So the next step would be to switch to a gastric tube, a tube from her stomach to outside her tummy where food and medications can be given that way. This is a very common procedure, and in Grandma's case is seen as a temporary setup, until Grandma can meet all her caloric needs eating food normally.  So the plan was to have the surgery this Saturday morning.

All in all, a lot of the same from earlier this week.  Kind of sleepy, but not unexpected.  Still need to keep Grandma positive.  I can't remember if I've said this before, but Grandma does have times where I don't know how clear her thoughts/understanding is but she will say things like, "I'm 90 years old..." "I don't know if I can do this..." "There's an end to everything..." and we have to remind her that she is not dying and is in fact doing very well.  There sill be difficult days, but everyone thinks she is progressing as expected and should focus on recovery.  Of course to what real extent of recovery remains to be seen, but keeping Grandma positive is very important right now.

Thanks for keeping her (and Grandpa) in your thoughts.  The cards and notes are wonderful!  We love to show Grandma her cards and re-read them with her to remind her how many people love her and are thinking of her.  :)

Thursday 3.14

[Sunday 3-17-2013] Sorry, this was up Thursday, but then I had to edit it and forgot to re-post! So sorry!
-Christina

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I haven't really heard anything since Tuesday, but hoping that "no news is good news" and assuming the last couple days have been a lot more of the same as earlier in the week.  Some reports below from Grandpa and Joyce.  My mom/Rosemary is going tomorrow for a meeting with a lady involved with the ultimate moving of Grandma to the rehab facility.  We'll see what she says.
-Christina

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From: GRANDPA
Date: March 14, 2013, 11:20:30 AM EDT
To: ROSEMARY
Subject: Mom this morning

Nurse Stacy still here, but not tomorrow.
Told me occupational therapist was here & Mom did pretty good, but now she is worn out. I put the music on which she wanted low but follows attentively (moving her finger). Nurse had fed her some apple sauce, which she swallowed readably well, but they have to take some kind of test to check whether it actually goes to the stomach.
Another important point. Nurse said that under some kind of rules she may be considered ready for moving to the rehab pretty soon. If she does not properly swallow they would put some kind of tube in surgically to her stomach!  She talked like this was often done. She said she would hope they could keep her at least over the weekend! Of course I emphasized I would like to keep her here until she can move without a tube. (Mom just asked me to raise the music volume ). Stacy just said the speech was ready to come, but they agreed to postpone until later, hoping she'll be more perky  then.  Mom's legs also became restless again so they'll give her some Tylenol.

...........................

From: GRANDPA
Date: March 14, 2013, 6:43:42 PM EDT
To: ROSEMARY
Cc: JOYCE
Subject: Update  at end of today (Thu, March 14).

Around 1:30 I left Mom's room to spend some time in the cafeteria, and after I came back a  rep of a group called Palliative Medicine Consultation, Heather Travis, NP, was waiting to meet with me & mom. At my suggestion she sat down with me, away from mom's hearing. (Actually, I just noticed that the name of her office is Chesapeake Palliative Medicine (445 Defense Highway) and I'm not sure now whether she is on the staff of the hospital).
Anyway she said that at some point a decision will have to be on how to proceed with mom, namely to move her (to a rehab center) with or without a tube (either thru the nose or to the stomach), and that all these methods have risks. For example, even with a tube, the patient could inadvertently take food by mouth, and in all cases food could wind up in the lungs. I don't think Mom at this time is able to make decisions about this and I said  I would consult with my daughters and that you would come in tomorrow and Joyce Saturday. She then suggested and I agreed to a meeting tomorrow at noon (if you can't make that let me know) and she then said that they could set up what she called a speaker phone connection so Joyce could participate). So I hope you two can have a preparatory get-together by think of questions, etc to ask this lady, who said she is member of a team that recommends or decides what to do. She seemed a very friendly and informed person. I am certainly glad however that you had decided to come here tomorrow.
In general Mom seemed to be kind of tired (sleepy) today. Nevertheless I think she did very well with the therapists. Particularly with the speech therapist checking on her swallowing. She ate a whole container of that apple sauce (about 12 spoonfuls!) and after that about 3 spoonfuls of that apple juice [honey-thick consistency -CHA] and then a spoonful or so of water. I thought that was real progress.
An another issue you may want to inquire about is that they found a big difference in blood pressure sitting up and lying down. I believe they were going to give her medicine for that.
Finally, however, it seemed to me that mom still has (or has wound up with) poor short term memory. For example asking where she is, telling me she does not have the right eye glasses, saying today she was married 70 years, that this year is 1998, etc.
So I'll see you tomorrow. (Just spoke to Rex and agreed to charge up the iPod and take the cable for connecting to the MacBook Air)

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On Mar 14, 2013, at 7:07 PM, ROSEMARY wrote:

Oh my,
poor mommy with regard to her memory loss. I believe perhaps it becomes more apparent when she is fatigued after a lot of activity.
Yes, I will be at the hospital before noon. Hopefully. The only thing that would delay me would be some massive traffic tie up. I plan to leave the house here at 9:30, which is just the tip of the end of the rush hour here, so I will be there as soon as possible.
From everything I have read, this sleepiness is all pretty much par for the course for now.
I am interested to find out what new medicine regimen she will be on.
I hope you have a restful evening daddy. spend a little more time relaxing and reading something for enjoyment and go to bed early.
You need the sleep.
See you tomorrow
Love, Rosemary

...........................

From: JOYCE
Date: March 14, 2013, 9:57:45 PM EDT
To: GRANDPA, ROSEMARY
Subject: RE: Update  at end of today (Thu, March 14).

Hi Dad and rosemary,
Well,  I do hope that you can get a hold of me when you have this meeting. Rosemary, call me at either one of the numbers I gave to you.
Alot of these practicioners are consultants nowadays, (and it sounds like it based onher group name) , but its good because this topic is  part of her specialty  area.  Anyway, I think you could learn alot.  The tube in nose is the one that could become misplaced for some reason, and end up in the lungs instead of the stomach. Thats why they do the XRay before actually using it- to confirm placement. The other tube would be placed inher stomach- and come out of her tummy. You wouldn't have food end up in the lungs, but it requires a little procedure to make a hole t o place the tube thru- therefore, an opending that would always require a dressing (bandage) of some type.  That dressing would have to be changed regularly and the open hole is potential site for infection, so has to be taken care of a bit.  This is a common procedure tho, and nothing to be scared about.   Anyway, lets see what she says!
  Well, I guess with her short term memory problem, she may be lucky in some ways, and not in others. I mean it may bug that she has to keep asking about certain things or whatever, but at least she doesn't remember that she asked before and have to feel bad about it! Also, maybe she doesn't really even remember things that are unpleasent (getting the nose tube, or someting else) and have to ponder on them....
Have a good day tomorrow.                                 love joyce

Tuesday March 12

My mom and dad visited today.  Just a few things to report:

• Another more quiet day, but Grandma is doing well.  She was sleepy at times, but she was alert and knew what was going on, happy, etc.
• My dad put some music on her laptop for her to listen to, and she was SO happy to listen to that, even moving her arm to the music and "conducting" a little!  I think this was some organ music she received on CD in the mail last Monday from a friend in the Netherlands.  Perfect timing!  Music is fantastic for recovery from all sorts of brain issues/trauma.
• Mom reports a nice woman from the rehab center came to visit, and talked about Grandma being transferred there soon.  Not sure when exactly that will be yet.
• They've found that Tylenol helps a lot for Grandma's restless legs, so that should give her some relief.  If it was keeping her up at night, then this will hopefully give her some rest.
• Mom says she talked to the neurologist who said that the drowsiness is normal and will continue for weeks or months, part of the healing process.

Sunday Pictures

A few pictures from Sunday.  

The first two are mine; the last one is Grandpa's.

A church friend brought the flowers from church that morning.

 Speech and Swallowing therapist working with Grandma

Happy Sunday!

Quiet Monday

Received a few messages today from Joyce and Grandpa.

Grandma was much sleepier today, which was a bit disappointing to Grandpa.  I think she was worn out from the weekend, especially Sunday with all the therapists and visitors, and Joyce and my mom/Rosemary agree.  

Joyce also suggested that perhaps Grandma is not getting a ton of rest when we are not around (in addition to also not getting rest when we are around), perhaps waking up at night too, so then she needs some days to rest up a bit more.  And it's not easy sleeping in a hospital to begin with!  (Honestly I feel this is to be expected; I myself was even wiped out yesterday and a bit today from the busy day Sunday and I'm perfectly healthy!)  

Mom/Rosemary added that from everything she has read, these days of extra sleepiness are to be expected and are a normal process of the healing post-stroke, and that just because she is sleepy and her eyes are shut, does not mean that she is not aware of sounds or activity.  Just knowing we are still visiting and being there for her will be a comfort. 

We will keep an eye on things, but I think we agreed it is not yet anything to be worried about and that for now it is important to remain POSITIVE and remember that this is all part of the process of recovery.

Joyce called the nurse to check on things and the nurse reiterated that Grandma was sleepier today but did not indicate that there was anything particularly bad about that.  The nurse said that the doctor was telling Grandpa that there are going to be some hard days, and some better days; this is just a harder day compared to yesterday. The nurse also mentioned that Grandma still has kind of restless legs (as we saw late in the day Saturday and Sunday), and the cause of this remains to be seen, but the doctor is looking in to it, getting in touch with Grandma's regular doctor as well.

Also, at some point today Grandma (unknowingly) pulled the NG tube out of her nose, and putting it back in went okay but I understand Grandma had some pain from that process.  Kind of awful to think about, but it is good that Grandpa was there to comfort her and the tube is seated just fine now (confirmed with X-ray).

Joyce also says she talked to Grandma on Grandpa's cell phone today.  She was able to state that she was tired and that it was a harder day. She stated she had eaten, she said that she was fairly comfortable, but that she was sleepy. Joyce said the same things to her as to Grandpa, and urged her not to be discouraged by the more difficult days, reinforcing that for the most part she is so much better than a week ago, and that she should not be afraid of the way she felt, that things would get better. Grandma said something about doing the best that she could, and Joyce applauded that as the truth. 

On Being Positive

Again, I think it is easy to feel discouraged by the ebb and flow of progress.  However, even though it is hard, it is important both for US and for HER to remain positive and remember that this is all part of the process. (There are some links in the Helpful Links page that speak to this.) Recovery will take time and Grandma is already doing so well, in just one week!  As I've said repeatedly, she will continue to have good days and bad days, but she is doing AWESOME for one week later and I think we saw this weekend that she really is continuing to make progress.  Yes, it is frustrating after a series of good days to have things seem to take a step backward, but she WILL get through this!  A sleepy day does not mean things are getting worse.  These are things we should remind her of as well.  

If you're the praying type (and even if you're not), please send your prayers (and positive brain waves and happy thoughts) to help Grandma and Grandpa to remain positive on the more difficult days. <3

Saturday Pictures 2

These are Grandpa's pictures from Saturday:

Good morning!

Getting ready for "launch"

Up, up and away!

Safe landing

 Rosemary, the Queen (napping), Elizabeth, Jerome

New "Helpful Links" Page

In my looking around online, I've come across a number of great resources for stroke patients, caregivers, and their families.  I have collected a number of these links a page which you can find by clicking the "Helpful Links" tab at the top of the homepage.

Let me know if you come across any good pages to add to this list and I'll put them up.