Monday, December 27, 2004

"... I'll Be Home For Christmas ... "


Picking Patti up for Christmas was full of high hopes only to find Patti unaware it was even Christmas Eve or that she was going home for the holidays, such is MS and memory. <grin>


Bowel incontinence torpedoed the evening’s agenda. The associated custodial care involved in clean up, bathing, and laundry was difficult. It’s been 9 months since I did this level of home caregiving 24/7 by myself or have been accustomed to the daily routine.


Patti’s strength has increasingly failed in that time and symptoms of spasticity have not only had their advent but also progressed. Wow! Does that double punch multiply the level of difficulty in handling Patti by oneself. I better understand the increasing use of Hoyer Lifts by care facility staff.  


Associated stress and exhaustion yielded to gloom, I doubt visions of sugar plums danced in anyone’s dreams.



Patti who NEVER wakes early, of course, was up early. <grin> Patti’s only remaining contribution to self care is some ability left to put on her own socks and shoes. The process of getting her up, bathed, changed, dressed, and laundry of bed linen and soiled bed clothing turns any morning into slow motion.


To balance the family aspects of ‘Christmas morning’ with caregiving is tricky. A late brunch followed by gift opening worked better than expected.


Patti’s parents stopped over in route to a larger family gathering, taking our daughter along to give her the counterbalance of an “able bodied” Christmas.


Patti’s napped the better part of the day. Her brothers and their families were able to visit later. The final guests making it just as Patti was ready for bed. Patti rallied for company and did rather well for the extra time before succumbing to fatigue and ‘abruptness’.


Repeatedly reminding and explaining to Patti the differences between  living in a home environment and care facility seemed to help extend her cooperativeness. It took effort on her part and wasn’t easy for her.


Absence of vehicle transfers and consistency of environment stacked the deck in favor of a good day. Patti wanting a good time and trying her best was the rest of the formula of success for a Christmas Day at home. It wasn’t the kind of Christmas that you dream of or sing about, “…just like the one’s I used to know…” . It was an ‘alternative’ Christmas - the best of possible.


On a lighter side, for whatever reason Teazer, our 18 yr old cat, was obsessed with climbing all over and sleeping on top Patti when she napped and slept. Patti thoroughly enjoyed this disruption. <grin>



Now THIS morning Patti slept in until almost Noon! <grin> Again we moved through the slow motion process of lifting, bathing, changing, dressing, laundry and feeding.


You cannot box yourself into a timetable with homecare. In a care facility with increased staff that is another story because you have so many people available to do simultaneous functions.


We decided to wrap up the time with a movie matinee of “Meet The Fockers”. One of those zany comedies Patti can enjoy and did. Sealing the weekend with a couple hours of laughs.


It also provided somewhat of a ‘regular’ outing ending to an unusual weekend. It seemed such a segue way might make the most sense for all.



Asking Patti if she had a good time or enjoyed the visitors or being home? She thought for a moment and responded that she, “enjoyed seeing Megan and the cats!”. <GRIN>


Only 9 months ago Patti could still assist in her own transfers, had no symptoms of spasticity, and could somewhat dress her self with minimal assistance. Now, multiple times daily needing to lift Patti in and out of bed and completely change and dress her are progressed needs and new and physically demanding caregiver functions.


I am not only sore and aching in different muscles but also grateful that we timed the transition to a care facility when we did.


Was it all worth it to have a Christmas at home? I don’t know. <grin> I just know I had to try. And Patti's smile in the last picture says more than words can ever try.


  1. You tried, that's for sure.  You always try and most of the times you succeed.  I pray you had pleasantness amidst the daunting challenge of caregiving.


  2. Some just don't understand that the effort is well worth the outcome.  It doesn't always work the way we want it.  Outsiders don't understand the unscheduled changes that always happen: We had guests coming Christmas Eve, they said they changed their minds and would come for breakfast.  We got ready ( as you say it  takes time) and just as we are ready to go, we get  a call that they overslept and would come at 1.  We went ahead and then they drove up at 11.  But they just can't see anything but us just sitting there waiting for them to decide when they would come.  WE DO HAVE A LIFE!  I think I hate most not being able to plan anything!  The unexpected always comes up! Sorry I needed to rant about how others see caregiving and the patient.

  3. "Ranting" is always welcome here! <grin> Consider it a second home.

  4. Thanks so much Patrick, I think Patti had a wonderful time...she was surrounded by her family and that is soooo important.  I came down with either food poisining or I have the flu today.....I feel like a train hit me so we did not get up to visit Patti. I will have to wait and see how I feel tomorrow to plan a visit.


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