Sharing the trial and error learned lessons of a MS spouse caregiver / carer about family, home care, and transition to the care facility era from 23 years of living with Multiple Sclerosis as a family ... a ‘warts and all’ picture of living with MS.
Statistics clutter the internet. 30% of caregivers die before those they are caring for. Spouse Caregivers are at 63% greater risk of death than non-caregivers. Family caregivers have been shown to age prematurely, as much as 10 years off a life.
More important … what about the surviving person of need?
Successful caregiving situations are as unique as the people involved. Loss of a caregiver is no statistic it is the unraveling of the fabric of living and caring.
In our story, we learned you have to plan for the worst. Of course hope, but plan while you can. Talk about when, how, what, why and who will step in.
We began to talk about and develop a ‘best of possible’ plan for Patti.
Homecare was never an Alamo for Patti. Patti did not want our daughter to have to sacrifice her life as her home caregiver. Past experiments with home care helpers had always ended poorly. Other family or friend options were not 24/7 dependable.
We began to look at care facility options from independent living communities through nursing homes.
Assisted living seemed ideal but after visiting we learned it was not an option for Patti’s level of Multiple Sclerosis progression.
To replace my level of home caregiving necessitated a 24/7 nursing home level facility.
We kept discovering there was so much to compare and consider. God help families that have to do this under immediate need conditions.
A family caregiver is an economic godsend. Paying to replace their services is astronomical.
Financial and Estate Planning became a MUST.
Before cognition became an issue of competency we met with a lawyer and Patti assigned me durable general power of attorney. We additionally established secondary people so transition would be seamless should something suddenly happen to me.
Financial planning, special needs trusts, etc are not only critical but can ONLY be done in advance.