Wednesday, March 6, 2013

Safety in Numbers... and Paying it Forward

Yesterday, I attended a quarterly Family Council meeting at the ALF.  Dr. Kimberly Curseen, Medical Director of the geriatric palliative care program at the UAMS Reynolds Institute on Aging was the speaker.  I'll be honest... I almost didn't go.  And as Dr. Curseen began to speak, I wondered why I was there.  It wasn't her fault.  But the discussion centered on Alzheimer's patients and their care... and dementia.   However, as Dr. Curseen began to explain the stages of Alzheimer's and dementia... and the various kinds of dementia... she hit on several things that resonated with me and my situation with Mam-ma Polly... and she gave me several insights.

The first thing that hit home with me was Dr. Curseen's comment that "one of the last things to go" in dementia patients is the "social graces"... the ability to smile, say "Hi!  How are you?"... or to shake a visitor's hand.  She said this is why patiens will light up when someone enters the room and speaks to them... and this is 100% Mam-ma Polly.  Later in the discussion, I said to the group, "If one more person tells me that Mam-ma 'still has that sweet smile,' I think I may scream."  Mam-ma will die with that sweet smile.  It's all she has left!  The administrator chimed in and agreed... "Even when Polly feels really bad... like today... she is still smiling."  Another family member attending the meeting asked, "Oh, is that the sweet little lady who is always peddling around in her wheelchair... the one with the white hair?"  That's my Mam-ma Polly!

Later, Dr. Curseen talked about how difficult it is to take Alzheimer's and dementia patients out of their routine.  She mentioned that once-frequented restaurants may now be too crowded, noisy and confusing for the patient.  She suggested that any visits to places outside of the facility be done at off times... with small groups... in quieter settings.  This really resonated, too.  Mam-ma did not do well at all the last few times we took her out to eat.  And the ALF administrator added that they always see a lot of behavioral problems with residents around the holidays... when families insist on taking them out of the facility and away from familiar surroundings.

This was another revelation for me... and I thanked the administrator for speaking out.  I told her that I truly grieved over the decision this Christmas NOT to take Mam-ma out and try to get her to our house on Christmas Eve.  While I knew in my head that we could not physically get her inside - she didn't even make it off the driveway last year! - I still felt guilty.  And then someone asked me, "How was it the last Christmas she was with you?"  "Terrible!" I replied.  "She slept most of the time or looked and acted miserable... and she was ready to go home before dark."  "So there's your answer," this person told me... and she was right.  And now I had reinforcement from the facility staff.  Mom and her husband ate lunch with Mam-ma on Christmas Day... I was there for the facility dinner earlier... and a day or so before Christmas.  And Mam-ma was fine... probably happier than the last Christmas she spent with us. 

When the doctor finished her discussion, the family members began to talk and share.  One lady, a retired nurse for the state hospital, told of her husband, who has Alzheimer's.  She said she should have seen the signs earlier, but she didn't... and maybe she didn't want to.  The doctor very lovingly reassured her that "We see the signs when we are ready.  You did nothing wrong.  When the time was right, you made the move."  This sweet lady spoke so lovingly of her husband and how she visits him each day... and how hard it has been.

Another lady spoke of her mother, who is apparently the QUEEN of guilt trips.  She told of visiting recently with her sister.  Her mother lay in bed repeating, "Oh, LORD, help me!  LORD, help me!"  Finally, the daughter said, "Mother, what do you need?  We're right here!  Why don't you let us help you?"  The mother replied, "Because I can trust HIM!"  We all had a laugh, but the woman tearfully said, "It's been four years now... when do I stop feeling guilty?  I can't even enjoy doing the things Mother used to do, because I feel so guilty that she can no longer do them."
I reminded this lady that we honor our loved ones when we do the things they can no longer do - or at least I believe we do.  I told her that I can make my grandmother's sugar cookies and homemade rolls, and in sharing them with others, I feel like I carry on her legacy.  Now, this woman's mother may not admit that to HER... but the administrators assured her that out of sight, this woman is adorable and pleasant - that she truly has mastered making her daughter feel guilty... and delights in doing so!  And this may never change.

What can change is this woman's attitude.  She can live in the world of her mother when she visits, and leave it at the door.  I know it is hard, but you can do it if you work at it.  We also all agreed that talking and sharing helps tremendously.  I pointed out that I believe if anything positive can come from our experiences, it is that we share them with others who are going through a similar situation, so that they know they are not alone.

In the end, the doctor told us that statistics show that the stress level of caregivers with a loved one still at home versus that of a caregiver who has admitted their loved one to a facility is markedly similar... no real difference.  I found that tremendously profound.  I don't think I am nearly as stressed now that Mam-ma is at the ALF... but if I add up all of the trips and meetings and phone calls and struggles over laundry and diapers and wipes and medications and falls... the wondering if/when the phone will ring... the not feeling comfortable to leave town because this might be "the day" that we are needed... I see that the stress is still here.  It's just packaged a little differently and distributed in spurts more than day-to-day (and sometimes hour-to-hour) like before.

So I came away from the meeting with a sense of community.  We are all in this boat together... and we have stories to tell... people to encourage... and at least one for each of us who desperately needs us to reassure him/her that they are still loved, valuable, and honored.  For the foreseeable future, this is my task.  I pray for the patience to see it through.

Meanwhile, I need to throw in a happy thought.  Timothy started HIPPY this week... the Home Instruction for Parents of Preschool Youngsters program.  He LOVES it already, and he made quite an impression on the instructors at the elementary school when he went for his evaluation.  All three of our little ones are growing like weeds (and keeping the other end of the spectrum in perspective!).  Oh, LORD... give me strength!
Our little Zola... almost 2.
Nathan Daniel (7 months) with his Uncle Greg

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