So much pain and suffering, and sadness. Thoughts for all of you enduring these times.
Hugs to each of you who are currently going through this. One surprise to me when my father was passing was what hard work it is for a body to let go. Or, if your faith is inclined to frame it this way, for a soul to extricate itself from the body. It’s such an active process, and can be so difficult to witness.
Yes, dad is working hard. He’s now pretty much unwilling/unable to eat or drink. He’s exhausted, poor guy. My family members have been getting to know all the staff at the hospital. They have been angels and moved the other guy out to another room, so there’s more room for our huge family when we all come to see dad.
They put in a central PIC line because it’s so hard to find any usable veins for IVs and so he rarely has to be poked any more. They were kind enough to do it at bedside so he didn’t need to be moved.
Mom has no idea how bad he is and alternates between thinking he’s golfing or in the hospital and soon to be discharged. She’s visited every day but disconnects the body she sees from her memory.
Thanks to all for your support. This is hard for everyone on multiple levels. I’ve lost many in groups I lead to lung disease and it’s painful to watch folks struggle so hard to breathe. In some ways, it feels like previewing my future, as I have severe lung disease too. The experts predicted I’d be dead long ago.
@HImom my best to your entire family.
I am so sorry @HImom. Hugs.
@HImom - so sorry for all your family is navigating. You are there for your parents in every way possible; I remember finding some comfort in that. Wishing you peace.
Thinking of all who walking the difficult walk now and sending you my best.
I am thinking of you all and hoping that the path you each walk is peaceful and as gentle as possible on your loved ones and you. When we were growing up we heard all about raising children, not losing parents. It’s do difficult to watch and to know what is best for them and for us.
I am so sorry for all the families who are struggling. I hope you are all able to navigate this difficult path as peacefully as possible.
Dad is still on the ventilator but my sister had an encouraging talk with a doctor. The CT scan showed that his yeast infection hasn’t returned, and the fluid they are draining is not infected. They may insert a tube that would remain when he goes home, so they can drain the fluid regularly instead of having to admit him to the hospital. Hmm, we asked about that possibility last time!
The couple who looked at my parents’ house today are interested. Trying not to get my hopes up… The only other offer so far was a lowball. It makes me nervous that I may have to be the person who rejects/accept offers. There’s a lot of money involved, yikes.
Well, the seesaw continues with my folks. Mom finally understands dad is in the hospital and encouraged him to take his meds from the nurse. She also asked to go to see him tonight to say good night.
Dad’s lab tests have improved in pretty much all measures, which is encouraging (and frankly surprising). We shall just continuó watchful waiting.
I dropped off a package of individually plastic wrapped edibles for the staff, who have been uniformly very helpful and kind to dad and all of us. His nurse today was surprised and happy and said she’d put it in the break room for everyone to share.
I’m wishing peace to all of you. It’s a hard path to be on.
This op-ed piece also rings painfully true. https://www.latimes.com/opinion/story/2020-02-16/doctor-patients-send-home-to-die
@DeniseC excellent article. I’m so thankful my dad has LTC insurance that pays for part of his 24/7 care and that he can afford the OOP expense. I honestly don’t know what we would do, otherwise. My mom and sister couldn’t take care of him.
Ugh, caregiver drama. One of the women, we’ll call her Jane, does a great job with my parents. BUT she thinks she can break the rules. She rearranged the work schedule without running it by the supervisor. Without going into details, the supervisor decided reluctantly to let her do it.
Well, then she asked for a Christmas bonus, which is a big no-no and she knew it. She was warned not to do it again.
Then this week, she asked Mom if she could have the lounger in the bedroom that the nighttime caregivers sleep on! That is the last straw. I told the supervisor I will be the bad guy and ask for her to be replaced. Even if Mom were to say, “Jane, I’d like you to have this ring I got in South Africa,” the correct answer would be, “No, thank you!” I think Mom and Dad are going to be upset with me, but I will deal with the fallout.
Your decision makes sense, @MaineLonghorn. Given the “bold asks”, I might double check the possibility that other items have gone her way. Seniors are so vulnerable. All the best.
The op-ed is spot on. Thanks for posting it. Caregivers, often elderly family members themselves, can be put in a horrible position of wanting to be a resource while feeling ill-equipped for daily judgment calls and decision making, as well as physical care for a bed-ridden patient. It can be too much, for too long.
@travelnut, good point. I think I’ll mention that to my son.
A doctor spent a good bit of time talking to us (I was on speakerphone). Long story short, Dad is not going to get better - his lungs are just in bad shape. It’s not smoking damage, because he never smoked a cigarette in his life. Ugh. Their unit closing is fast approaching and I’m feeling very nervous about it.
Thanks for listening. It does help to vent! I think my IRL friends are kind of burned out.
Is it too late to get out of buying the unit? I spent the last 7 weeks of my mother’s life coming from out of state to help my sister deal with her end of life issues. It was very difficult. Hospice was helpful but as noted they just don’t provide 24/7 care. All the best to those of you still dealing with this.
Another article on caring for the ill at home… https://www.washingtonpost.com/health/many-americans-say-they-want-to-die-at-home-its-not-always-easy-to-make-that-happen/2020/02/14/4196fa0a-325a-11ea-9313-6cba89b1b9fb_story.html
We might want to save that link, if we ever need to pass it along. There is no easy answer. But when I see families in hospice (inpatient,) part of their relief is the better attention to loved ones. The other is they can finally admit they don’t have the training (or even frame of reference) to know how to manage home care well.
Our hearts are in the right place, do take credit for that. But the knowledge isn’t there. And care is so often so much more complex than in our grandparents’ day.
Love to all of you. As one pointed out, try to accept that you’re doing the best you can, from love and caring.
In good news, mom is getting more stimulation than she has had in years by being with us and my sibs and going out and about. I’ve personally demonstrated to two of my sibs how to turn her hearing aids on and hand them to her one at a time and she’s been wearing them all day in the week she’s lived at our home. Despite my leaving notes, none of them have helped ensure she wore the hearing aids, only H and I have. Without them she can’t hear at all and can’t participate in any conversations.
She’s much more responsive while wearing them. Last night for the first time ever, I was able to get her to wear a Poise pad in a Depends for sleep and covered mattress with waterproof, and fluffy mattress pad.
I convinced her to wear it by saying that her long beloved internist admits HE wears them so he won’t have accidents and be embarrassed. I told her they are for sleep and when we just want a bit more security.
My family is exhausted from trying to have at least one family member be with dad 24/7 while in the hospital (including sleeping overnight in his room). Nearly all of them are working full-time.
Mom is staying with me and we visit as well. Some family members have mentioned how this is not sustainable with other obligations.
The trouble is dad is wanting to pull things off and remove them (like O2 mask). If a family member can’t gently discourage him, he will have to be tied/restrained and will hate that. It’s also still touch and go (on him surviving at all), but not all family members understand that.