Here is the basic "what's up" for us as a family, and what we are thinking about.
Out of respect for the immediate family, please come by and visit, but call first.
- Mom's stroke is in an acute phase- and we should have sen some positive results from the surgery by now.
The doctors or family members close to the situation do not expect much and do not think it humane to have
mom suffer for a 5-6 weeks recovery.
- During her acute phase (recovering both from the stroke bleed and the surgery to alleviate the pressure from
the bleed), she is likely to have multiple infections, all of which are decision points for us to see if we treat, or not.
- The sobering reality:
- She will not recover from this. Prayers for a peaceful and loving death are welcome.
- She will need assistance for all basic functions- something she expressed never wanting in her will.
- She will have so much muscle atrophy that rehab to get her back to some function, even if she could,
would take months to years.
- She has limited gag reflex, so she is likely to get food / water into her lungs (not a good thing).
- The damage to her brain is causing her body to recoil- her legs and arm are retracting to a fetal-like
position. This will lead to bed sores, infection and pain.
We were waiting for a CT scan- which showed no good improvements, so we decided against a rehab facility.
Her vitals are all over the place, so God could take her at any moment.
Based on our mother's wishes we need to decide not to have a different feeding tube, or G-Tube is inserted. Mom
has expressed that she did not want to live at the assistance of machines, and that she wanted to die at home.
We are praying about the fact that she will never be self sustaining, never be able to hug her grandchildren again and
that over the next few weeks, we may see some improvement in her ability communicate. A number of us experienced
this first hand: mom makes efforts to respond (occasionally) to our request. Doctors are not clear that she is present,
or that she retains any of this, but nonetheless, those of us with her have clear indications of her awareness. She
cried during the rosary, moaned when the priest showed up, puckered when we asked for a kiss. She fades in and
out like an analog radio station- sometimes clear, mostly static.
The challenge this creates-- it feels good to help mom. Many of us felt a connection with her and we could physically /
medically sustain her body for years. All this would be causing mom to live a life that no one (and most importantly
she) never wanted to love.
What we are praying about and what we need your prayers for:
We are making her comfortable and not treating any of the many challenges that will arise. VNA Hospice will aid as we
take care of her at home as she dies. Lillian loves her family, her connections to people, so we'd love to have people
visit her in prayer (providing the good Lord doesn't take her sooner).
What we realize is that we will all die. Whether or not we can join mom, Lillian, Memere on her journey is the question
we all are living with. We want to celebrate Lil and invite you to join us in that process.
Family Decision Points
Lillian's new beginning - From Feb 2006
Nurse practicioner Rhea Photopolous reviewed mom's chart and
provided a second opinion and confirmation of mom's diagnosis.