Focus!

You remember Melissa, our Down's syndrome daughter - - - I am sure. Well, this was her weekend with us. But this visit was super important for her as she was to see my new living arrangement. Same old stuff - - - squashed into new spaces.
No sooner had she arrived than we were invited to an Easter music concert in the same building. That would be fun, so we accepted. It was happy, bees-in-your-honey music and we grinned at one another. One moment later I turned to whisper something to Melissa, but her chair was empty. My blood drained down to my heels. Edging up to a real panic, I looked down one hall and then another.
The halls were empty. Fifteen - - twenty - - thirty minutes passed.I am sure my fears were contagious for everyone seemed to be looking for her.

I went back up to our new apartment and waited. I was frightfully aware of what could happen to someone as vulnerable as Melisssa. There was the huge shopping mall parking lot, the shops along the strip, the super Genuardi's store, the strangers, the cars zooming along on Boot Road, the fact that she was non-verbal - - I shivered.

Dear God, surely You will watch over her. Please send an angel to show her how to get home. Surely she will remember. Finally splitting the silence in two, the telephone rang. It was Howard our security guard from the front desk.

"Melissa Jane just walked in the front door with a big smile on her face. Looks like she has been on a shopping spree."

"Shopping?" I tried to keep my voice low. "Oh thank you, Howard, please keep her there. I'll be right down."
Grabbing my walker I took off at breakneck speed. There she squatted on the floor in the middle of the spacious lobby in the main building, unconcerned as a naked jaybird at midnight, removing the cellophane from four decks of playing cards. Melissa sat on any cards that spilled out of her arms. She was not about to share her loot with anyone, let alone her mother.

I quickly deduced we were not at the arbitration stage so I suggested that we go upstairs to our new home. So, pockets bulging and hands full, we left the lobby for a more familiar battleground.

Melissa is non verbal so hunting for the facts of the matter was useless. Upstairs, in a calm tone of voice I reminded her of the evils of stealing.
She assured me she would never do that and we cried together and hugged and then I thought that as sure as the day ends she would.

But she had no money with her. She must have taken them. So Melissa went back to Melmark soundly scolded, and I went to bed a mother raising her daughter to steal. Horrors!

BUT, the next day, when the manager of the store was contacted to repay him for the stolen goods, the truth came out. One checker remembered her waiting in line and how she dumped all her change on the counter only to discover she did not have enough.I will not attempt to imagine the hue and cry that might have emerged. I was not there. I did not ask.

However, another checker three aisles over, offered to make up the dollar difference which ennabled Melissa to go home with her trophies and a Pepsi to boot.
A one-in-a-million young man. Kudoes! And to you, our Melissa, what can I say? Happy Easter.

Merry Christmas, Melissa!

Christmas to me means God loves me enough to come to my house, to get  me ready for His home in Heaven whenever it's my turn to die, because - - -  now get this, because HE LOVES ME!

 Doesn't that blow your mind? So do you really understand? He loves YOU!  And me!  Both of us. And even more important He knows us inside out and still He came.  Think about it.

   And while you are thinking about it, let me tell you about Melissa's Christmases.  Melissa was born in 1963, our sixth child, with Down's Syndrome.  But Melissa is a happy 46-year old child.  (Just ask Mary Parris.) Melissa may not hear you when you call her name, but walk in with a package bedecked in ribbons and bows and she KNOWS!

 It's Christmas!
SO it has long been a friendly family competition of sorts to see who can please Melissa the most at Christmas and send her off into cascades of laughter.
      A few years ago when we all were gathered together, the usual competitions sprang to life when Melissa was opening her presents. David gave her a huge circular carryall with zippers galore and Melissa emoted happily all over the place.Julie and Steve gave her a raspberry sweater which she barely acknowledged and promptly stuffed in David's bag. They they pounced on their mother with a "Thanks Mom, that's the last time we'll listen to your suggestions."
    Then Brian and Jolie presented her with a black bag that looked like a deluxe computer bag.  Melissa went into overdrive.  She held it up and showed everyone with volumes of never-to-be translated words.  Then she took David's bag and crammed it into Brian's bag.  At this point she was beyond reach.
 But Diane and Ron's present had yet to be opened.  It was a red zippered carryall which registered high on the squeal scale and was a hilarious addition to her haul for the day.
      The rest of our time there, Melissa strutted around the house with the black bag on one shoulder, the red bag in her hand, her raspberry sweater on and a Christmas muffler aound her throat.

   She can't remember what I gave her and neither can I.  Such is the stuff of Christmas with Melissa.

But this Christmas, as we strut atound with our latest acquisition, are we missing the best Christmas present of all? The gift of baby Jesus, God's Son.  Think about it!

A "heads up" for those caring for their spouses with Alzheimer's

Perhaps I should tell you that when Alzheimer’s entered our world my husband Paul was almost seventy years old. Along with that radical change, we found activities of daily living changed. Oh how they changed.


Arguments multiplied, bad feelings festered when my saint-like contributions to caring for his life were misunderstood. I tried. I questioned. WHY would a good God do this to His child? Did he not realize how much He had permitted in my life already? My six-month old baby dying in her crib - - and then the disappointment of the birth of my Down’s syndrome little girl two years later when I had just blown out 42 birthday candles. This seemed like a nightmare.

Then along came a dream of a different color. Kind of like a vision. We felt commissioned somehow, holding our bright-eyed little pathfinder in our arms; commissioned to help other children like Melissa. We knew we could do this with God as our pilot. So we founded Melmark, a residential school for the mentally challenged. We started long ago in the year 1963.

But back to Alzheimer’s and Paul. He died after doing battle with Alz in 1996.  And since I am a six-month blog enthusiast, I have been hopping here and there and reading comments by caregivers.  But you know what I have discovered?  I find myself wondering  as I read  what seems to be the consuming distress of the caregiver as they witness the disintegration of the personality of their loved one.

Now, understand please, I did not like it one small bit either, BUT it is what it is.

All his life Paul had  been Vice President, Chairman of the Board, President, Founder, father of six GREAT kids, always a leader as well as my pal and lover since college days.

But know something? When he was stricken with this dreaded disease, he suddenly became none of these. However he carried a huge slice of his loving personality WITH HIM into the disease. He had Parkinson’s disease as well as Alzheimer’s, and I remember sitting on the arm of his chair planting kisses in his neck until he giggled almost non-stop and said “I think I’m going to have to tell my wife about you.” And I agreed.

Hey, he loved me. Oh, there is so much more to tell. He needed me and while his body was still here with me, I was going to show him I loved him, coming or going.

So, my advice for caregivers would be “Don’t cry for the man you loved for so long, love the man you have right there breaking your heart and making you weep when the sun goes down. But stop long enough to look up unto the hills and trust God. He knows what He is doing. Hang tough! It’s not the end of the world. It’s life.”

Now, you will probably never listen to what I have to say about living with Alzheimer’s and Parkinson’s and Down's syndrome. But to deny reality and weep day after day about your portion in life - - -  there simply is no future in that. God knows you can handle it.  Call upon Him.
 To will what God wills produces peace.

Happy Thanksgiving

Last night was a night from the book of Job. (Job – in the Bible)

The only difference was with Job's resume. I was neither "blameless nor upright" but I did "fear God and tried to shun evil". But that was it. It was Thanksgiving weekend and Melissa who is my Down's syndrome daughter was home for her visit and inoculated with Christmas madness over the visit of her sister Diane and family.

It was hard to keep her spirits in tow; she threw hugs and kisses all over the place. All afternoon. But neither Santa nor Christmas presents appeared. And when her sister and family left for home, Melissa was clearly upset; her timetable must be off kilter. What had happened to Christmas? Even the turkey dinner transported by Diane and Ron was refused.

Melissa then decided to pack and unpack her suitcase as she marched around the house wheeling her precious cargo of noisy plastic hangers in the bottom. She would not let me near either of these. I bit my lip and we made it until eight o'clock. At that point I decided to put an end to our cold war by announcing cheerfully, "BED TIME!" It was dark outside but there was no rest in sight, so I firmly announced that I was going to sleep with Melissa. I tried to make it sound like fun but that announcement was greeted with disdain. She allowed me little room in her bed; however I managed to get both legs up in time to grab a pillow.

It was like Times Square in her bedroom and I begged her (I did) to unplug the twinkly lights so we could sleep. For some unknown reason she obliged and got up. Into her suitcase they were carefully squashed on the bottom next to the plastic hangers. That little maneuver took about 45 minutes for then her night lights had to be found and plugged in. We again approached Morpheus. But I knew the truth that no sleep was available that night on her turf. Now was the time for Mommy's room.

I grabbed her American Girl doll and her dog-eared playing cards and stalked out of her room saying,"They're in my bed, Melissa. Hurry up now."

Well, she did not hurry but made it eventually into my king-sized bed. Well I dropped off immediately. But almost one hour later, I awoke in horror to discover she was not there. I found her seated on the floor in her bedroom packing again the things that she had somehow left behind. It's a virtue to know when to surrender. "C'mon Melissa, let's you and I have a party." We broke open the cookies and chips, set my computer on the edge of my desk and watched The Fox and The Hound on Net Flix until 3:30 am and Rudolph and some other Santa silliness until we were both bleary- eyed. It was now 4:30 am when we finally retreated to our beds again.

I decided then and there not to try to sleep but just in case she roamed I parked my walker outside her bedroom door. All seemed to be quiet as I crept into the living room with a glass of grape juice and the latest catalogs.

Moments later, I had overturned the entire glass all over the window sill and grey-white carpet. I sat there watching the red stain drip down the wall as I tried to tell myself it was only grape juice. I prayed," God I know what is happening here, and I know You will not let me be tempted beyond my ability to go through it with You victoriously. Help me not to lose it God."

I think I fell asleep praying.

When Grandma goes to the doctor

I get so lonesome for Heaven that I am afraid God is testing my patience and I will have to wait until I am 100 or some such foolish number. This has been my week for doctors, the cardiologist, the neurologist and my primary doctor. I saw my primary yesterday and this is what I said. "Look, please do me a favor, don't ask me a bunch of questions, let me tell you what my problems are first."

    He listened to my puny complaints and then I said, "Now I know you are a good doctor and I have told you what is going on with me, and I know full well your predilection for extensive excursions in your chosen field but I do not want to do one thing further about any of them. You have let me unload my gripes, now I will not have to tell my peers. I do not want to see any specialist or have any sophisticated battery of tests, so let's you and I agree that they go with my eighty-nine year old turf. They are the physiological decay that goes with my age group. So we shall not question them, simply acknowledge them and then wish me a Happy Birthday, okay?"

    He smiled, albeit grimly, and said, "Happy Birthday!" and we shook hands before I opened the door. Oh yes, he did ask me one question before I escaped, "Why is it you want to get to Heaven so badly?" So I told him before I left his office.

     

Wrinkled Wings - - (continued)

           
 It was an innocent sounding answer to my neighbors question of what do I do all day?

• "I write." But it came out kind of blunt, and a bit prideful. 
•  "And what do you write?" he persisted.  I gave an "Anne-of-Green-Gables" answer.
• "Books!"
• "About what?" my questioner was not quite satisfied.
• "Old folks living in communal facilities for retirement living."
• "Oh. they are really great institutions, aren't they?"
• "Right. But, you know, there are other viewpoints."
• "Well, I guess you only find that out by living there."
•  "The last ten years in two such facilities kind of makes me an expert, right"?

           Where does Grandma go now that she can no longer live alone?  At this juncture a healthy respect is required.  We simply must talk about it together.  Young folks and us old geezers.  Thus, the reason for my book.  For although I am fairly familiar with all the unsung blessings of retirement homes, there remains a dearth of honest, gut-level information about what it is life really like, little tips that can grease the skids for grandma and grandpa who are ready to settle in for the long haul.

           Most of all complete honesty is needed. So present all the facts; what you do know and what you don't. Be forthcoming,
          "You know Mom, I don't really have all the answers but we can go over to visit again, how about that?"
             Mom will be disarmed by your obvious  "I'll settle for nothing less than the truth." attitude.  This is a big step for her at the end of her life.  It takes guts and a good sense of humor to avoid the shallows.
             "But,"  Mom is sure to say, " now that Tommy is in the Navy, his room seems awfully empty."   So again the obvious must be re-examined.
               "Don't forget, Mom, Tom needs to have his own room waiting for him when he is discharged, and you know how he drives us all a little nuts when he has the remote control in his hand."
              And slowly the bare naked facts stand there shivering. Mother should not live alone anymore for she might fall down and break her hip.  Breaking your hip seems to be the one thing in life you must never do, for it marks the beginning of the end. So it follows that Mother must go to a place where someone can watch her.
                  Here it is that Mother's horrible "nursing home" must do a Jekyll and Hyde transformation into a turn-of-the-century retirement facility for independent seniors.  And here it is that I jot down the fun and the fury of what life is for some grandmas and grandpas as they hit their eighties.

Confession of an old saint with wrinkled wings

Psalm 71:18 “ Even when I am old and gray, do not forsake me O God, till I declare your power to the next generation.”
And there it is. Old age! It’s not a contagious disease but sure as sin, you’re going to get it. No cure known to man, yet millions of dollars are spent on artificial knees and hips that often accompany this period. You can’t talk about it, nobody hears you; you can’t see it for you can’t believe it is happening. You just witness day after day the erosion of previous life skills as time relentlessly marches on.

With this verse as a diving board, I humbly offer you one more blog. In it you will find a bit of humor and snatches of thinly disguised wisdom. Perhaps your loved ones might never expose the rawness of their feeling that time has passed them by, leaving them washed up or shelved, squashed into some self-assigned cubby hole. Some senior citizens are too scared to voice their objections; they are not even sure they have a right to say how they feel.

As an author, I have taken the liberty to mix and mask both the facts and fiction that surround my life experiences at this stage of my life. These “Golden year” observations are written from the wrinkled pages of my life. I have chosen to call them “wings” (as in angel). I have also included the insights of others. They are presented to you in no particular pattern or sequence. There is no personal beginning or ending to this saga. The only starting point for this book is found in my Bible.

I ask you to withhold final judgment of this blog until you realize first hand that time changes and caught you off guard too! I hope you can drop your defenses and any “Hallmark” prejudices and allow my musings to expose you to another viewpoint .

My insights are only mine and are neither right nor wrong, black nor white; they just are how I see my world. I guess what I say is something like a parting legacy to those pilgrims that follow. My only HOPE and the only truth you can trust is found in the Bible.

Romans 8: 37 “No, in all these things we are more than conquerors through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus Our Lord.”
                                                                                                                            (to be continued)