Hold Me Up!

One of the things I never realized when Boo and I began this journey was the need for support. At first, I thought I was invincible. Nothing that Boo, his doctors or home health care threw at me was too difficult. I could do ANYTHING. And I could do it alone, without anyone's help. After all, wasn't that part of being a wife? Part of “in sickness and in health”?

Well, that didn't last too long. I caught a virus and crashed. Suddenly my I-don't-need-any-help attitude didn't seem so realistic anymore. In fact, getting out of bed to prepare a can of soup didn't seem realistic either. Fortunately, my rescuing angel came in the form of a determined coworker who brought us a meal. OK, really she brought me ginger ale and oyster crackers and a meal for Boo. She also set up an informal daily round of friends to check on us and help with daily necessities---whether I wanted help or not. I'll always be grateful that she stepped in with help I didn't think I wanted and pushed me to accept what I so desperately needed.

I began to better understand our need for friendship and support. Still, my vision of what friendship looked like was no longer workable for us. Going out for dinner and a movie, having friends over for a meal, spending the day shopping or at a street fair...none of those familiar activities were even a remote possibility. Our lives had changed and I needed to adjust my expectations. That was a very difficult time for me.

The face of friendship has evolved for us. The phone and the internet have become integral parts of our daily life. Instead of spending the day shopping, I frequently get emails from a few friends with coupon codes or special online offers. (Did you know that Wal-Mart and Amazon usually offer online coupons and free shipping on items we routinely use for Boo's care? Definitely good for the budget and a time saver too!) A quick ten minute Face Book chat with a friend over coffee brightens my whole day and gives us both a mini break. Boo finds it easier to talk on the phone than to meet a friend for a meal. Most days he finds it difficult to tolerate the visual and audible confusion in stores, restaurants and other public places. I've come to realize that even though we are more home bound than I would like, avenues for friendship abound.

Besides friendship, Boo and I need other types of support. One resource that I've found extremely helpful in the last nine months is email contact with Boo's doctors. The particular practice he uses has an website that allows us to access the results of his medical tests, his general information and to email questions to his doctor. We've received amazingly quick responses to most emailed questions. Sometimes an email response is sent, but usually we receive a phone call. This service has eliminated unnecessary office and emergency room visits and has resulted in better care for Boo.

One area that has been lacking is information about the realities of day to day caregiving. Through books, tips from home health agencies and other medical professionals and trial and error I've cobbled together a workable life. It just doesn't seem like enough. I know there are excellent courses available, but leaving Boo to attend one isn't an option. Yesterday I stumbled across (or was led to) a website that either offers many of the resources I've wanted and needed or have links to places that do. Catholic Caregivers is an answer to prayer. Thanks so much to the Dodds for all the work they've done in preparing this wonderful resource.

http://catholiccaregivers.com/index.htm

Thank you to everyone who has been so wonderfully supportive and understanding of us during this part of our journey, who have truly held us up!

Remembering Words

A few months ago, Boo announced that he hated not being able to remember words, especially when he knew what he wanted to say. So, we began our vocabulary trek...

We began playing word games several times a week. Because of his limited vision, Scrabble is no longer an option. We do enjoy Quiddler, but once again Boo's vision was an issue. The cards were too small and the printing too intricate for him to see. (Quiddler cards are beautiful!) I have made some modified cards for our Quiddler games out of four by six inch white card stock with simple bold black letters.

Remember the alphabet car games you used to play with your children? You know, Aunt Sally is going on vacation and in her suitcase she has an Apron, a Book, etc. We play variations on that. This past week we worked on people, places and things we heard on the news from A to Z. Other times we've done emotions A to Z, adjectives that describe ____ (winter, people, Boudreaux, eic.) from A to Z, books from A to Z and, his favorite, what to take to a deserted island from A to Z. Hint: Boudreaux is always B.

Years ago, my parents bought a game called Spill and Spell. I don't know if it is still available. I haven't seen it since I was in elementary school. I printed three inch die with simple bold letters and we play a variation of Spill and Spell. Boo is actually very good at this one. Boudreaux and his friend, Romeo, “played” with the letter dice when I left them out recently and I need to make more so we can play again.

Another thing Boo has found helpful is poetry. We've begun to read poems at lunch, partly to keep him at the table long enough to actually eat. He seems to respond well to the cadence of poetry and retains lines that he quotes later. That seems to help him “connect” with the words he wants to use. This past week we read a lot of Robert Frost's poetry. I think this was his favorite this week:

The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference

Out for Coffee---And an Omlette

Happy to be out and about

Drinking coffee!!!

Boo agreed to go out for coffee today, a very rare occurance these days.  He prefers to stay home almost all the time.  Sometimes I can convince him to ride around while we run errands.  Getting him to go in a store is another story.  Boo is easily disoriented by loud noises and bright lights.  I ensured that the restaurant wasn't crowded before we left.  Maybe, maybe with a few good experiences under his belt, Boo will be more interested in regular outings.

When the waiter asked Boo what he'd like to drink.  Boo quickly told him that he wanted an omlette with cheese, ham, onions, tomatoes amd peppers, a plain hashbrown and wheat toast AND  coffee.  He ate every mouthful and drank four cups of coffee.  All that after eating breakfast and lunch/

Boo is napping now with Boudreaux who is still upset with me for taking his favorite person away.

A Blessing for Medicine (and those who take it)

Tonight while attempting unsuccessfully to give Boo his medicine, he announced that he thought he'd be willing to take his evening medication if it were blessed. However, since it wasn't, he wasn't interested. OK...a blessing for the medication? I've never heard of that! Less than an hour later I actually found one in the Rural Life Prayerbook on EWTN's website. Once his medication was blessed, he quite contentedly swallowed it, put his pajamas on and went to bed. Amazing!

A BLESSING FOR ANY MEDICINE

V. Our help is in the name of the Lord.

R. Who has made heaven and earth.

V. The Lord be with you.

R. And with your spirit.

Let us pray.

O God, You have made man out of nothing in a marvelous way, and in a still

more marvelous way You have "remade" him. You have been so kind as to come

to our aid with many remedies in the various sicknesses with which mankind

is weighed down. Kindly hear our prayers and pour Your holy blessing from

heaven upon this medicine, that he (she, or they) who partakes (partake) of

it may merit to receive health of both mind and body, through Christ our

Lord.

 R. Amen.

Divine Mercy Sunday

          Today is Divine Mercy Sunday and Boo is excited.   We have prayed the Divine Mercy Chaplet once and I guess from his attitude, we'll pray it again at bedtime.  He has listened to a talk about the chaplet three times today.  (I think we downloaded it from EWTN, but I'm not sure.) 
         Boo is beginning to eat a little better.  Tonight we're having sauteed chicken strips, yellow rice, cabbage and carrot strips.  He drinks at least one protein shake daily and usually has a bowl of oatmeal with fruit or yogurt with a whole grain muffin.  Other than that, it takes some bribery.  For example, when you've eaten all you can, you can give Boudreaux a treat.  That seems to work quite well.  Boo is also using his exercycle daily for one ten minute and one five minute session.  The extra exercise may make a difference in his appetite. 

Visit to Doctor

We took an unexpected trip to Boo's doctor's office today.  Boo hasn't been eating well the last few days and has been rather confused in the evening.  His BP and glucose readings have been within normal parameters, but slightly higher than usual.  Of course, his family doctor is on vacation, so we saw someone different.  Boo was quite unimpressed and reacted as he often does when he's unsettled by change.  He refused to speak.  Finally a nurse he recognized came in and he responded to her questions.  He does have a slight infection which is being treated.  If Boo is still not eating well and confused on Tuesday, we'll go back.

Homemade Yogurt

Boo is happy today. I made homemade yogurt last night. We have four pints of sugar free cherry pineapple yogurt and three of plain. He has had yogurt twice today and really wants more. Maybe if he is restless during the night...

Lately Boo has had a major sweet tooth. I've had to really scramble to satisfy his appetite. I've served whole wheat pancakes with added protein powder, cranberry oat muffins, sugar free milkshakes and blueberry bran breakfast cookies. When this phase is over, I'll be glad. Ensuring that he has adequate vegetables and protein daily has been a challenge. Still I am grateful that he is interested in eating.