A Slow Week

Bettie continues to be troubled by abdominal pain, and it is definitely slowing her progress. We're not sure to what extant the pain is just from her gall bladder drain vs "other issues" she wouldn't want me to mention. Anyway, the net effect is she spends more time than I would like, lying on the family room couch.

When she is up and able, her walking is improving by the day. Many times I walk her to the bathroom, rather that wheeling her, and I can see definite progress. It's frustrating to have her down so much when I can see that with some concentrated work, her walking could improve vastly. Patience is the order here.

When she is down, we work on speech skills, word recognition, and small hand skills as she is able. We see progress there too. During "slow" times like these, it is good to keep in mind that from birth to death, the human body is engaged in a continuous effort to be well. Even while lying down, brain cells are working to restore function, re-make lost connections, etc.

Though the week was slow in terms of progress, she did have visits from all three therapists plus the home nurse. Tram, the nurse, suggested that we try to get the internist doctor visit moved up a week to look into the abdominal issue. We did that and will see that doctor on Wednesday.

Meanwhile, the family continues to refine the routine here at home, adjusting to new duties and requirements. On the three days that I go into my office, I awaken Jordan to come into grandma's bed when I leave. I get home a little before noon to relieve her. When school starts, the schedule will have me, with the blessings of my supervisor at work, working from home most of the time. Two days a week, Veronica will take a long lunch and come home to assist with Bettie while I go into the office for meetings and to maintain a presence with my co-workers. It should work fine.

A Diet to Die For

You may remember from the post on Thursday that we spent some time that day at Dr. Heide's Clinic getting briefed on nutrition.

I must confess that when I heard Raven, the pleasant young woman who greeted us, identify herself as a dietitian, I put up my guard. My only experience with "dietitians" has been in a hospital setting ... not exactly a place known for truly healthful eating, at least not in my (and Bettie's) opinion. (The term Jello-dispenser comes to mind.)

It was probably fun for Raven to watch as I morphed from hostile to accepting as she explained her credentials and approach. It turns out she is a graduate of Bastyr University, one of the premier "alternative" medical training schools in the country. (And they are located right here in the Seattle area; Juanita to be precise).

There are a couple of issues for which we needed dietary help:

• Maintaining a consistent level of foods with sufficient Vitamin K content.
  This is so that her diet does not end up counteracting the desirable effect of the blood thinner that Bettie must take.
  
  
• Stopping further weight loss, and beginning to build back some muscle. (At the time of her stroke, Bettie weighed 122 pounds. She is now down to 102.)

Both these issues are important, and both of them have a feedback method that will tell us how we are doing. For the Vitamin K issue, we go in for a weekly blood check to be sure the consistency is where they want it. The weight loss monitoring is more simple: get her on the scale.

So, what does Raven recommend to arrest the weight loss and begin going the other way? A high calorie diet, of course. Lots of olive oil, nuts and nut butters, cheese, fish, (particularly high-fat salmon). For now, eat the high-starch potatoes before the green vegetables. And how about desert? Oh sure, ice cream, cake, anything dense with lots of calories.

Of course I will be hovering over her at meals, making sure that her plate is clean...secretly hoping that she can't quite finish that last bite (or scoop) of Haagen Dazs Coffee Mocha. Ah, the life of a caregiver. Yes, it's a tough job, but somebody's got to do it.

"Is there anything I can do to help?"

When this first happened, I couldn't count the number of people who expressed a desire to be of help, as this post is titled. At the time, I had no idea if I needed help and if so, what kind. I needed my wife back, that's what I needed..."Help with that if you can", I thought. Now that I've lived a little over a month with stroke in my life, I have a clearer perspective than at the first.

Our home situation is unique in that we have live-in family. Our son Tim, his wife Veronica, and their two children: Jordan, 17 and Jonny, 14 have been with us since we bought our present home, five years ago. That's a different story, but it has worked out for us quite well...and now it is a godsend.

I often would tell people: "We're like the Waltons (a 70's TV series) and I'm the grandpa." Funny thing: in the TV show, Ellen Corby, the actress who played the Grandma, had a stroke, just like Bettie's: speech impeded somewhat and right side partially paralyzed. She was off the show for a time, then came back, stroke and all. Her role on the show only lasted another couple of years, but she lived 20 more years after the stroke. Will Geer, the actor who played Grandpa, died within a year after her return to the show. (Hope we're not like the Waltons in that regard.)

I mention the home situation only to make the point that what I say here about the need for help and support is being met for me by live-in family.

But if you know of another couple where a spouse has suffered stroke, the unaffected mate needs help immediately. They want to spend every possible minute at the hospital for those first few weeks. This means home meals, lunches for work, house and yard maintenance, car servicing...all the things that take time away from being with the loved one are opportunities to be of service. If you are inclined to be of help, don't ask "Is there anything I can do?". Just pick something and say "I'm going to ...." and then do it.

Once the stroke patient is home, I don't think one person could possibly provide safe and responsible care. If there is no family or other support network, then a live-in facility is probably the only reasonable option.

If you find yourself in that situation (and you should not think "It can't happen to me") your choices for providing that level of care are: be rich or have long term care insurance. Think about it...this is not something you want to try at home...alone.

Settling in at Home

Bettie has now had each of the three therapists (speech, occupational, and physical) visit here at home and a schedule is worked out for regular sessions.

She is making slow but steady progress. We see little signs here and there: Complete sentences that make perfect sense, correct answers to "test" questions, that sort of thing. The scan to confirm the absence of the clot had to be postponed for a week due to insurance issues.

Can't Keep Her Down

She wanted to go back to our bedroom after breakfast this morning. She lay on the bed and I told her: "Now I'm going downstairs for a little bit, so don't move, OK? Well, you can go to the bathroom, you know how to do that, but otherwise, don't get up." She nodded agreement.

I was back to check in on her in no more than ten minutes. When I came in the bedroom, I noticed her purse in the entrance hall, between our two closets. "That's funny" I thought, "I don't remember getting that out." In the bedroom proper, there I found her, trying to get her slacks snapped with one hand. She was fully dressed in a light blue top and nicely contrasting navy slacks. She had her knee-highs out from the dresser where she keeps them. She was standing by the bed, the full-length mu mu that I had put on her earlier was laying aside. All this in about 10 minutes. "Oh you naughty girl" I laughed and she fell back on the bed laughing too. What am I to do with this one? Ya can't keep her down.

Later, she was sitting on the edge of the bed and suddenly looked down at a small stack of books that I had left, just as she left them the day this happened. There she saw, peeking out from the stack, a book about heart disease that she had checked out from the library . She exclaimed: "Oh, I forgot". She pulled the book out, and sure enough, it was over-due. (When I returned the book later in the morning I told the librarian the story and ended with: "...so I'm happy to pay the fine". The librarian concurred that it was cause for celebration, given the circumstances, then added: "That will be $3.75 please.")

Later in the morning we (Bettie and I) left for two appointments. The first was to her long-time hair-dressers Yahow & Betsy Lam at Yahow Hair Salon. Bettie has been going there for a long time and they do great work. They turned her from a Medusa look-alike to the glamorous gal we all know. Thanks Yahow.

Then we headed to an appointment with every one's favorite stroke doctor, Dr. Aaron Heide. The visit is documented in a separate post.

Husband = Caregiver

Today was Bettie's first full day at home. What a relief to have her back. No more three trips-a-day to the hospital. It was also the first day of my transition from husband to caregiver.

Actually, that's not true. I'm still her husband, but I'm also her caregiver. Well, one of her caregivers. From my perspective now, I can see that husband and caregiver are very similar in many ways ... at least I think they should be. I should have been more of a caregiver all along; then this transition would be easier.

Anyway, the fact that this Thursday status is not being published until Friday morning should give you an idea of the difference between being at home and at the hospital. Silly me, I though that now that she is at home, I'll have more time since I won't be driving back and forth to the the hospital three times a day...wrong! I'm not complaining, mind you, just being realistic here. I am very blessed to have live-in family, so we're able to manage quite well...at least we will as we get used to the new requirements.

I think this will be the last of the daily "Status" posts that I'll be doing. From here on, in addition to the occasional "thoughts" kind of post, I'll be doing one post per week titled something like: "At Home: Aug 1 - 7". I'll add to it through the week as there is opportunity and something of significance to report.

(Note: I later decided to change the blog format as detailed in: A New Look For The Blog.)

Setting up for Rehab at Home

Two home care nurses visited to set up follow-0n home care for Bettie. We decided on a weekly nurse visit plus physical, speech, and occupational therapy. I have ordered the same speech therapy "kit" that they used at Acute Rehab so family can work with her to get communication skills back to working order.

We had considered getting her a hospital bed to keep on the main floor in the family room, as our bedroom is up seven stairs. That does not look like it will be a necessity...she does fine on the family room couch when she wants to rest, which is pretty often. Other supplies: shower chair, toilet attachments, support bars, etc. are readily available from medical supply outlets, and Craig's List is a good source too. In a few days, we'll have a reasonably accommodating atmosphere for her. She came home with a new walker from Acute Rehab and we already had a wheelchair at home.

In our master suite, the bath is just a few steps from her side of the bed. Each time she needed to "go", she woke me and I basically just watched...wait, that doesn't sound good. Well, she is perfectly able to get up, move the walker to the toilet, etc. I just...stood guard, that sounds better.

She is eating well, and we are managing the medications (she came home with seven prescriptions) OK. She never complains about taking them. (I'll know she is getting a lot better when she does, as the "old Bettie" was not much for medications at all.)