When I chose Persistence as my word for 2022, I gave some thought to choosing Peace instead. I was thinking that every facet of my life could use some peace – that might be the best word for this year.
Turns out there’s no such thing as peace when someone close to you has a severe medical issue.
M has been living at the nursing care facility for the past few weeks and has seemed to adjust well. For the last 10 days or so, he has been living in a room of his own (rather than semi-private), so I was pleased with how things were going for him.
One thing I did notice – as I have noticed the entire course of M’s illness – is how quickly he seemed to be declining. I know some elderly people with dementia who live 10 -15 years with the illness and decline at a very slow, almost imperceptible, pace. But I first noticed M’s symptoms in December 2017 and we started the doctor’s visits to find a diagnosis in January 2018. Here we are in January/February 2022 and he has declined so quickly. He’s gone from jumping over a wheelchair his first week at the nursing care facility to barely being coherent the last days of January.
And then we get to February 1st.
I visited with him the evening of the first, but he was asleep the entire time I was there. According to the nurses, he had slept for the majority of the day and hadn’t eaten any of his meals. Almost all of his medications had been eliminated, so we knew the sleeping and inability to wake up weren’t being caused by medications.
The first phone call during the night came about 2:30 am. M was running a fever, having trouble breathing and was restless. The ambulance had been called. Several more phone calls later (each one came in as I was just getting back to sleep) an ER physician let me know that M had pneumonia and I had to make a decision about how aggressive we wanted to be in treating him.
No one prepares you to make decisions like that at 4:30 in the morning.
Comfort care vs. aggressive treatment. Bowing to the inevitable vs. delaying the inevitable. There’s no right or wrong answer.
With COVID restrictions, I’m the only one who can visit M in the ICU and, as I walked in his room this afternoon, there was a tiny part of my brain that was holding out hope that he wasn’t in there. That somehow, the nursing care facility had made an error in identifying which patient was so ill and that I was going to walk into the room and see a different person in the bed from the one I was expecting. One of those classic Brady Bunch mix-ups.
Sigh. That’s not what happened. My love was there. Just as ill as I had been told.
There was one bright spot in today – I received a call from a woman with palliative care at the hospital who wanted to discuss the different levels of care available and make sure I understood what each one would mean. She talked to me about M and our relationship – how long we had been married, where he worked, our children . . . I’m sure she had a list of questions she was supposed to ask, but for the first time in A LONG TIME, I felt like someone in healthcare was actually listening to me. I thanked her, at the end of the call, and told her that I appreciated being heard, that I hadn’t felt heard in M’s care for a long time.
Prayers for peace. And peaceful resolutions. And peas. We might as well have them, too.
Continued prayers for His Grace in this and comfort for you both.
Thank you – love you!
My heart and prayers are with you Linda, as you navigate still more difficult decisions. ❤️
Thank you – so glad you are here with me.
You and M are in my thoughts and prayers sweet friend!!❤️🙏🏻❤️👍
Sweet friend. I am praying for you and your family now. Palliative Care staff are the angels sent from God. Lean on them. Ask them every question big or small. Let your kids lean in too. With their help you can be assured of M’s comfort and I pray that brings you the peace you need. Sending love, prayers, and a big hug. ♥️JMN
There’s nothing as wonderful as a road map, left by someone who has walked this trail before. Thank you for your kind words and for helping me see there is peace beyond this.
Prayers for you and M my sweet friend.
Thank you – miss you!
Thank you – miss you!
Linda, I’ve walked this walk and get how incredibly impossible it feels to be doing all this. Not fair- this shouldn’t be happening at this stage of your lives. One never knows how much they can handle, until they handle it. I’m here to listen anytime. Love you!
Thank you – your love and help mean the world. Can’t wait to see you tomorrow!
So very sorry this is transpiring so rapidly! You all are in my prayers.
Thank you – you are a good friend!
Yes, prayers for peace.
My beloved and I were faced with the same question the first week of December. I was fortunate that he was cognizant enough to participate fully in the decision. Live gives us hard questions. I send love and compassion to you.
I’m so sorry to hear that you have been on this journey, as well. Please know I’m sending you love, hugs and wishes for peace.
My heart breaks for you! Thank goodness for palliative care folks….my daughter in law is one of those who seems to always be on call. Praying for all those decisions you must make and for peace for you and your family. ❤️
Thank you – and please give your daughter-in-law an extra hug from me.
Oh my dear one. What you must be going through. My heart aches for you, and I know one day in the not too distant future I too will be in a situation not too different from yours. I’m so glad you had someone who actually wanted to talk with you – actually LISTEN TO YOU – and even better, HEARD what you had to say ♥️. Sending you love and strength as you continue to navigate the wacky pirate ship of dementia. Nobody asked us to be the captain out here in the middle of this ocean and yet here we are, huh?? I bow to your resolve, tenacity and fortitude. You are a hero and an inspiration to us all.
Thank you for your kind words – I can only hope that I have somehow left a little piece of a roadmap for you to follow. This is the worst journey no one would sign up for – and yet here we are. Sending you love and hugs – and my wish for you to have peace.
Linda and Family,
LOVE and PRAYERS to you all. May God bless you all.
Thank you, my sweet friend and neighbor. Love you!
Hi Linda, so sorry for this turn of events. I’m so glad that the right person has been in touch with you and has listened. There are no right or wrong answers. You will let your heart and your family guide you. I will continue to pray for you, M and your entire family. May you find peace.
Thank you – you can’t help but think if you make the right decision, or right combination of decisions, you’ll be let off this sinking ship. But it just doesn’t work that way.
Only those who have gone through and are going through what you are can truly understand how difficult and heart wrenching this must be on so many levels. Somehow you’ve managed to hold on to your hope, humor and spirit as your blog has given us a glimpse of the struggles; emotional, financial and navigating through the healthcare process. God Bless You!
Thank you – and thank you for being there from the very beginning. Love you!
I am praying so hard for you and M!
Thank you – I’m so glad to hear that your surgery went well. You’ve been in my prayers and I’m sending good thoughts for your continued recovery! Hugs!
Linda
Sheila and I have Matt in our thoughts and prayers. Of course, we are also thinking about you and your family. My mother, Matt’s aunt, suffered with Alzheimer’s. As a loved one watching this unfold, it’s horrifying. My mother was such a force in our lives and to see this disease ravage her was terrible. We hope for the best for Matt, whatever that may be. We hope and pray that he finds peace. Take care of yourself. God bless.
Thank you for your kind words. We loved Aunt Mary and can’t believe such a beautiful, bright light was allowed to be darkened by this terrible disease. I know that one day, we’ll all understand, but I’m a long way from understanding right now. Sending you love and hugs!
Linda,
What a difficult journey this has been.
I hope it won’t sound strange to say so here, but I’m so glad you two went to Ireland when you did; great foresight and wonderful memories created while Matt was still able to do so.
Praying for you both. Peace.
That trip to Ireland was the best thing we ever did. Of course, I wish now that we had done more, but I will always have those memories. I only wish that we had known the results of his Ancestry DNA test prior to going, so that he could have visited his “home county” while we were there.