Saturday, March 12, 2005

YEAR IN SUMMARY Part 2 of 5: did not need a weatherman to tell her which way the wind was blowing

About 5 years ago we began to look for something more than homecare. MS was beginning to impair Patti’s cognitive ability, reasoning, and memory. Lability and Pseudobulbar Affect in particular among other intermittent MS emotional factors were complicating Patti’s ability to interact with people. Incontinence was increasingly a problem both bladder and bowel and that totally affects quality of life.


We also were a family with an 11 year old daughter when this process began. The increasing MS related mental and emotional problems and the increasing custodial care needs unquestionably affected the entire family and our interaction with the community of neighbors and friends.


Patti's safety was a growing concern. Falls increased from frequent to multiple times daily.


Day by day, Patti could no longer be left unattended for even the briefest periods. Patti’s increasing inability to direct her own care reduced the options for contracted home care helpers. Symptoms were intermittent at first but Patti could see the immediate consequences and did not need a weatherman to tell her which way the wind was blowing.


Our process was interrupted for about two years when we moved to Pennsylvania in a failed attempt to improve options for informal caregiving help. That plus Pennsylvania’s age restrictions for adult day care and increasing need for 24/7 care we began to meet with attorneys specializing in elder care law and explore the legal and financial ramifications of nursing homes while Patti was still lucid most of the time.


Over in favorite sites you can read tons of material on MS and Long Term Care for further information.


The NMSS claims that 20% - 25% of those with MS will eventually need Long Term Care. Anticipate and explore options together before decisions are needed. All the information in the world can help but it will not make your decision for you. That will be one of the hardest you ever participate in.


It is not an instant process, at least not in Pennsylvania. We first began exploring and visiting actual facilities nearly a year before admittance. As a tip, consider not just what the facility has to offer but it’s proximity to you and other probable visitors. There are structured layers of fail safes both medical and social to prevent a rush to judgement.  


Then it gets to the money. In many ways it is simpler to buy a house <grin>, which sets up the next chapter on money…


"...for money makes the world go round ...”       Cabaret


Caregivingly Yours, Patrick Leer

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