Please Take Time to Watch...

Dementia is one of the hardest things for caregivers of the elderly to understand.  "Why does Mom act this way?"  "What is wrong with Dad?"  How can they be so confused and lose focus so easily?  This video does an amazing job of examining these questions and more...and demonstrating what life may be like for a loved one with some form of dementia.  It is well worth the 8+ minutes it will take to view...8 minutes that could change your entire perspective.  I would not wish this on my worst enemy...but sadly, many people we love dearly are dealing with some level of this madness - either personally, or as a caregiver.  Please take time to watch and learn...it might make a huge difference in your life and that of someone you love.

One Ringy-Dingy...

When I visited Mam-ma Polly yesterday, I found her cordless phone in the floor behind her night stand.  Honestly, she has not spoken to anyone by phone in months, and it would be virtually impossible for her to do so now.  I have left the phone in her room more for her peace of mind... an assurance that not everything has changed.  But in reality, everything has changed, and the fact that her phone was on the floor behind her night stand told me that Mam-ma doesn't even notice.  Removing the phone will actually give her more space on the night stand for things that do matter now, like her drink cup.

So this morning, I called AT&T and disconnected my grandmother's phone service.  The number that has belonged to my grandparents all of my 55 years, and probably longer, no longer belongs to them.  I have to admit, it was a bittersweet moment.

A speech therapist is working on papers to qualify my grandmother for her assistance... to see if there is anything that can be done to help Mam-ma get out at least a few coherent sentences.  It's worth a shot.  We believe she knows what she wants to say, and LORD knows she certainly tries to talk... but the words just will not come.  Her frustration is clearly evident... and often she simply cries.  Through gritted teeth, she told the Hospice nurse yesterday, "I.am.so.tired."

I don't know what will happen in the next few weeks/months.  I've reserved a room at the ALF for a 100th birthday party for Mam-ma on November 4th (her birthday is actually the 5th, but that's a Monday).  This morning, I sent the requisite application form and photo to Willard Scott, in hopes he will recognize Mam-ma on the TODAY show on her birthday.  While these things have to be done well in advance, I know there is every chance that the birthday celebration will never happen... and that is fine with all of us, because I know that an even bigger and better celebration will be taking place... in Heaven.

For now, I will remove the phone and remind any who might still try to call my grandmother that she can no longer communicate with them in this fashion.  I hope whoever gets this number next enjoys using it as much as she did... and has even half as long a run with it.

What Do Old People Talk About?

Someone was talking to me recently about visiting a nursing home resident, and she said, "I don't want to go... I don't have anything to say."  The resident was much like my grandmother... expressive aphasia, meaning she can say very little beyond the "social niceties" of "Hello," "How are you?" "I'm fine," etc.  Lately Mam-ma has gotten out some pretty long sentences and some big words... but on any given day, she opens her mouth to say something, and all she can muster is "I don't know."  OR... the words are not appropriate, as in telling my husband her sweet tea was "precious!"  I think she probably meant "delicious."

So I told this person, "Don't talk TO the resident... talk with someone in front of him.  Carry on a conversation about your previous shared experiences... kids and grandkids... mutual acquaintances, the weather, or whatever comes to mind... and let him listen.  When we do this with my grandmother, she lights up and becomes engaged.  I visit with the other ladies at her dining table, and she listens... and she enjoys that.  She feels as if she is participating without saying anything.

I've not spoken with my friend yet to see if she has visited her nursing home resident, but if she followed my advice, I am quite sure that the visit was positive for both of them.

As for my Mam-ma Polly, she is best described as "up and down."  Friday, I found her in the parlor, having donuts and coffee with several residents.  Ladies from my grandmother's church had come to visit and host a get-together.  Apparently they do this about once a month, which is great!  The ladies from the Sunday school class that hosted mingled with the residents and visited with each one, and I could see that Mam-ma enjoyed this immensely. 

Sunday morning, I went to see Mam-ma, and she wanted to go outside and sit on the porch.  It was already 93 degrees in the shade, so I suggested we go to the dining room. “Would you like to hear me play some hymns?” I asked. “YES!” she said enthusiastically. I positioned her beside the piano in the dining room and began to play some of her favorites. Soon, several residents had joined us, and one lady sang virtually every hymn I played. She sang strongly and knew all the words. I tried to play each hymn through at least twice to give her time to really recognize it and sing along.

As I played the hymns, I considered how some of them remind me of Holy Communion, as they are often played during this service. “Nearer My God to Thee,” “Blessed Be the Tie That Binds,” and “Faith of Our Fathers” come to mind as some of the “Communion hymns” I recall. So I asked my grandmother, “Would you be interested in taking Communion again?” The answer was “Yes!” and I talked with her and a table-mate, who belongs to my church, about receiving Holy Communion.

When I rose to leave, a man at a nearby table motioned for me to come to him. He asked, “If you are going to have Communion, are you going to serve it once a week, like the Bible says?” Another man at his table looked at him, perplexed, and said, “Where does it say that in the Bible?” The first man said he didn’t know the exact verse, but the Bible says that they gathered once a week at the church to “break bread.” “What else could that mean?” he asked. Man #2 and I almost simultaneously replied, “… to share a meal!” Man #1 retorted to us, "Well, you're full of CRAP!"  Needless to say, he was not happy! I wished them a good day and left as the two men continued to argue.  I felt like I might have started a religious World War III!

The Hospice nurse had done a urinalysis on Mam-ma last Friday, and the report was that everything was clear.  By Sunday, her urine looked "milky" - like watered Milk of Magnesia.  So the nurse did another urinalysis, which showed a UTI.  I don't know of the first round of antibiotics did not totally wipe out the infection, or if another one promptly arrived.  Either way, Mam-ma is on another round of antibiotics.  However, she told the nurse she didn't like taking so many pills.  So the nurse talked with Mam-ma's doctor, and he removed virtually everything not absolutely necessary... multi-vitamin, Claritin, fish oil, and more.  I think he cut the number of pills she takes daily by almost half! 

The nurse also discovered that many of Mam-ma's symptoms... confusion, frequent urge to urinate, and more... were side effects of her new pain medication.  Thanks to her research on the Internet and her initiative to pursue this with Mam-ma's doctor, we are now back on a lower, regulated dose of Hydrocodone for pain... and Mam-ma does seem mentally clearer at times.  We have actually had some decent conversations this week - interspersed with some bizarre ones, of course!  Nothing is simple - or consistent - at this age and stage!

So today when I visited, Mam-ma told me she was "fussy!"  And boy, was she ever!  When she saw me talking to the Hospice nurse, she summoned her and said, "I don't want you a tellin' Debbie about me."  The nurse told her, "I was just telling her you are good today... but I also tell her when you are bad!"  Mam-ma didn't say anything else to her!

I'm thankful that we have a Hospice team we know - and who know and love my grandmother so.  They treat her as if she were their own grandmother... and that also means they take no guff!  I'm also grateful for such a loving staff at the ALF.  They, too, treat Mam-ma like a queen.  She is spoiled rotten on a daily basis. 

I hear about trips to the garden to pick fresh vegetables - as evidenced by the tomatoes in her room.  I see how one of her favorite aides, Josh, fusses over her hair each day before taking her to meals.  I've heard her speak of him and the maintenance man, James, as if they were gods!  I actually think they may walk on water! 

I'm also thankful for the occasional moment of clarity that Mam-ma has... the times she lovingly fingers something I've sewn and says, "I tell you what!  I'm so envious!"  Today she asked, "Are you not sewing today?"  I told her no... but I plan to soon, and I will bring new things the next time I come.  She grinned widely.

Mam-ma Polly and Timmy,
sometime in the fall of 2011.

I'm grateful that our little Timothy is with his mom, stepdad, and sister... but golly, we miss him!  I can't believe it's been seven months since we've seen him... and I'm struck by how my world has changed from diapers and wipes, car seats and toys to adult diapers, wipes, rubber gloves and wheelchairs with "lap buddies" to prevent falling overboard.  Things can change in a hurry... and I've learned to roll with the punches.  Maybe next time one of the residents tells me I'm "full of crap," I won't be so totally stunned!