I see my mother everywhere, whenever we travel. With the passing of Chris’ mom recently I am reminded that when you have a good one, there is no one that loves you like your mother. Lillian was a great mother.
Old women in our travels have that loved, wrinkled, worn and warm face of my mother. Her years of smoking, “some” drinking – the woman never met a mudslide she didn’t love – and childbirth, being married to my dad- all printed a map of life on her face.
I continue to scrape content worth keeping from my website. What I have below is the progression of her strokes, diagnosis, and death. As I look back at this, the content speaks for itself but doesn’t adequately capture the honor and privilege it was to be her health care power of attorney and to share that responsibility with my sister Paulette, and indeed- all my siblings.
What is not stated below: we spent nearly the last two months and certainly the last month of her life constantly by her side in laughter, tears, love, and family. I enjoy my family, and sometimes more so from a distance. I am sure the feeling can be mutual- we all are quite expressive and never suffer the fear or expressing an opinion (or two). During mom’s last few weeks, however, we visited with family, cousins and each other. We prayed the rosary- something many of us had not done in YEARS- and found our time together comforting. My mother’s death was her chance to have all of her beloved babies by her side.
[ The posts below started as mom had her second stroke. The first stroke she had was mild but left her sitting in a constant, pre-coffee, morning fog. As a family, we began discussing how viable her living alone was, and she fought for her independence- even continuing to believe she could drive as needed. My timeline editorial and commentary are here in italics and brackets ]
For any of the first time visitors, here are the basics:
* Mom had a stroke around Thanksgiving, 2004- was recovering through the Holidays.
* She needed to have surgery to fix some blockages and to have a by-pass. Doctors were concerned about her low blood pressure and poor circulation.
* The Bypass and surgery went well, but she had a subsequent massive “deep” stroke. Once blood started flowing, apparently, the blood vessels couldn’t take the recovered pressure.
While recovering from the blood pressure surgery in a care facility, Mom was brought back to intensive care.
The Doctors recommended a surgery to release some pressure due to the stroke. The risks of the surgery were less than the potential benefits of the surgery.
— Forgive my spelling errors- but here is what she had Craniotomy for an evacuation of an inter-cranial hematoma. She also had some bleeding in the frontal/temporal area.
[ In the months prior to all of this the local Blackstone family began reporting that mom was slowing down, losing track of conversations. The far-flung family (Bobby, Anita, me) would notice consistent drops in abilities as we came and went with time and visit. Together we all knew something was up. The low blood pressure was an early sign and we learned that over the past couple of years she had suffered from a number of minor strokes. Just prior to the massive stroke, we began making plans for more attendant care and some backup assistance for Steven and Sandra who lived with Mom and were attending to most of the issues, with the local siblings stopping in and helping out where they could. Stubborn Lillian, however, pushed to maintain her independence.]
Here is the basic “what’s up” for us as a family, and what we are thinking about. Mom has had a massive stroke during a recommended blood pressure “release” surgery, so it is not clear what is next. 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 seen 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, especially given that it is not certain she would ever recover to a life she hoped to live.
- * During her acute phase (recovering both from the stroke bleed and the surgery to alleviate the pressure from the massive bleed), she is likely to have multiple infections, all of which are decision points for us to see if we treat, or not.
We’ve prayed the rosary with her and will do so again today at 1:30 is, with Mass. The Hospital and hospice staff have said wonderful things about how we’ve expressed mom’s wishes. We’ve all talked about the consequences of this stroke and surgery and are prepared to act according to her wishes.
- Mom will never live without assistance again
- She had a “dense stroke” impacting the left side.
- We have to pray and be patient- It will not be clear how much recovery we’ll get for 4-6 weeks.
- We should have seen more progress by now, but we remain hopeful.
- There will be a CT scan on Wednesday to see if there is any improvement.
- The “bleed” has to subside, but her primary care physician does not expect huge results
Frankly, this may be it, but one thing is sure. God’s in charge. Mom has faith that keeps her here or send her home to daddy, God and of those we love and miss.
Don’t expect too many web updates. Call if you want details.
[ Our big issue at this point was trying to balance our desire to have our mom around, acknowledging that going into the surgery she said she want to fight, that she wanted to live on. After dad died, mom said she wanted to live longer. We struggled because this was happening so soon after Dad. Was he calling her home, blind without her and needed her hand again? We knew she wanted more, medically we saw that this was logistically impossible (the type of rehab needed was intense) and technically beyond what the medical prognosis indicated likely. She would not wash, eat, walk or function without constant care and then MAYBE- after months and months of therapy, regain some speech and normal function. ]
Many family members have stopped in or visited asking if nothing could be done. We all knew mom wanted to fight, all were not ready to see her go. 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 in her will that she never wanted.
- >She will have so much muscle atrophy that rehab to get her back to some function, even if she could, it 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 bedsores, infection, and pain.
We were waiting for a CT scan so we could baseline our decision on something- 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.
[ Ours is an extended, loving and open family. Lillian never met a person who wasn’t a friend. She was kind with her heart on her sleeve. Many of the cousins and family were grieving and needing details, so we/I continued to post details. Back in 2004, there was no social media- so this was our way to get the news out and not have to repeat the same shitty, painful details and reality we were living with moment to moment. ]
Dear family and cousins: 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 (howled, really) when the priest showed up- it made him go white as a sheet-, 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.
These are the historical notes on the death and dying of our beloved mother, Lillian E Renaud Marcotte
2-2-05 through 2-6-05
- Mom’s staff is great. She is comfortable and never have we seen better care.
- She floats in and out of awareness, in BRIEF moments- 5-10 seconds at a time
- She sorta has acknowledged us around her, less so recently by puckering, squeezing, crying and yes, sticking out her tongue.
- We are watching her closely for fever, infection, and signs of growing awareness
We’ve prayed the rosary with her and will do so again today at 1:30 is, with Mass. The Hospital and hospice staff has said wonderful things about how we’ve expressed mom’s wishes. We’ve all talked about the consequences of this stroke and surgery and are prepared to act according to her wishes.
What’s up here:
She has a feeding tube (temporary) in her nose to see if she gets stronger. We have to get through the acute period (a week after surgery) and keep her strong enough to see if there is going to be any progress. The marks on her neck are from the artery surgery
Mom’s Journey Home
21 February 2005
Lillian should be home on Monday, February 14th with Visiting Nursing Associates and her children and many of her grandchildren by her side. We all know that her pending death is an occasion to celebrate her life and help her with this ultimate transition. The Doctors have recommended “comfort care.” Certainly no surprise to all of us, but a somber reality. It is expected that given mom’s frail condition, she is not likely to have many more moments of recognition and that she may not come out of this “coma-like” state she is in. Once at home and receiving comfort care, it will be unlikely that she survives more than a couple of days and certainly not more than a couple of weeks. This has been an occasion of sorrow, grace and prayer for us as a family.
Prayers For Lillian
From Susan Perez 2-12-05
God, I thank you for the life of my grandmother, Lillian. I thank you for all she has taught me: the importance of family and loving them unconditionally. She modeled that with every one of her children and grandchildren.
She reminds me daily of the importance of a quiet heart. I thank you for all the Lillianisms I will carry in my heart. The funny way she has of sticking out her tongue to say I love you. Her ability to go into a restaurant and distinguish between what belongs to the restaurant and what she deserves to take home depending on the amount of money she has spent on a meal, drink, etc.. I thank you for the times she has quietly mourned with me and for her ability to not say word with her mouth but for her eyes to say it all. I thank you for her legacy she will leave with us when you call her home and for the assurance that I will one day see her again in paradise! I pray that her illness is painless and merciful.I love you mem,
Susan Her journey toward Christ.bruary 2005
Embracing The Final Journey
Mom has spent the last six days at home with her grandchildren and kids in the comfort of her own space.
Her will states, “If the situation should arise in which I am in a terminal state and there are no reasonable expectations of my recovery, I direct that I be allowed to die a natural death and that my life is not prolonged by extraordinary measures. I do not wish to be kept alive by devices. I do, however, ask that medication be mercifully administered to me to alleviate suffering even though this may shorten my remaining life. I have
confidence in my family and the medical community to come up with the right answers.”
Mom’s strokes caused a loss of function on her left side with no chance of recovery.
Her body became unable to process fluids or nutrients. While in the hospital she was retaining fluids so much that she was in pain. Together family and her doctors decided
the only merciful thing to do was to have her die peacefully.
Since coming home on Monday, mom has been calm, resting and occasionally aware enough to squeeze our hand, hold her rosary beads, and when she was there, pucker for a kiss.
Today her vitals have slowed, blood pressure dropped and she has been unresponsive
since her 8 AM bath and medications. The family asks for prayers for a peaceful and
Maggie and Arline made a necklace for Lillian. When Maggie went to put in on her, she said, “Memere, let’s put this on your arm and when you get to heaven, you can ask Pepere to put this on you.”
[ Mom died with all 8 of her kids there and our beloved adopted sister and cousin Arline, in-laws and family with her. We all witnessed the last of her living and dying breaths as Anita remained snuggled and vigilant as an adoring cat. She and I stayed with her as the paramedics came to remove her body. I lingered in the room to attend to her bed and raised her pillow to my face as the last of her bodily warm left for another life. We wept and I still cherish that last moment of the warmth of my mommy. I miss you, mom. ]