Parents caring for the parent support thread (Part 1)

My mom’s little apartment in her memory care unit is quite small as well but she’s hardly ever in it other than to sleep. I’m happy she’s involved and engaged in activities the majority of the day.

@MaineLonghorn
We just moved to Boston but lived in Austin for the past 9 years. I am pretty sure that I know of the community that your Mom is going to move in to. Let me say, that our best friends in Austin just moved her mom in to the same facility and she absolutely LOVES it!

I know you are dealing with a lot… I just wanted to share our friend’s esperience. I am SO sorry for all that has happened with your Dad. You are a great daughter. Please PM me if you we can discuss the details of your moms new home. My BFF’s mom is there as well.

I’m on my way back to Fl. Mom had a grand mal seizure, brain bleed, and her lactic acid levels are through the roof. I consented to hospice care and they are moving her to the inpatient unit. She will probably slip into a coma and pass fairly quickly, and hopefully peacefully. My brother is on his way too. I hope we make it before she passes.

Oh @momofsenior1 I’m so sorry. Safe travels and comfort to all of you.

@momofsenior1 . So hard , sending support from here and a PC hug.

@MaineLonghorn you are still getting energy and PC hugs, too. It is very hard.

Oh, gosh, @momofsenior1 , I’m so sorry. Wow, so many of us going through similar experiences.

I am just going nuts being across the country from my dad. I have a huge project to work on and it’s going poorly. My productivity is at about 50%, maybe less. It doesn’t help when I get frequent interruptions - “We need to figure out how to transfer funds to pay for Mom’s first month of rent,” “The UT band director needs to know the location of the funeral service,” “Mom, you stiffed me $117 in my caregiver’s pay…” OMG. I think it’s time to drop my iPhone into the toilet.

@momofsenior1. So sorry . Please take care of yourself and safe travels. We are all thinking about you.

It is so distracting, both the final year and then dealing with estate stuff and settling the remaining spouse. Sorry ML!

My mom is hanging in there and opened her eyes and smiled at me so she knows I’m here. My aunt said she was calling for her father earlier. The nurse doesn’t think it will happen tonight but I don’t think it will be long. We have family members not on board with our hospice decision. That’s hard for me. Thankfully my brother and I are united in adhering to her wishes.

Thank you for all the kind thoughts and good wishes.

@momofsenior1, stick to your guns. We have some family members who feel like we should keep trying different options. Just NO! Why do people feel they have the right to protest the immediate family’s decisions?

@momofsenior1 - glad you were able to get there and share a smile. Sorry for all you are going through.

@MaineLonghorn - it is so much, over a protracted period of time. 50% productivity while you navigate so many sets of needs is impressive. All the best and remember you are a variable in the equation.

So many lay people or the extended family not “there” for the everyday reality are just so uneducated regarding so many dying and death issues.

Btw, beyond the estate issues and other details to resolve, people just don’t get the whole personal bereavement and grieving process. It will feel callous, at times.

ML agree we’re all still holding you in our thoughts and prayers. And @momofsenior1, as well. So sorry for what you’re going through, too.

There are no easy answers.

HiMom, hope you’re doing well after your own loss. Glad your family seems to be pulling together.

I think people really don’t understand hospice. Hospice services can go on for years, and people do go on and off. In a terminal situation, some people seem to feel hospice is somehow bringing on death when the death is approaching anyway, and it is just a gentler supportive way to go in a situation where the outcome is clear. But hospice services fit to whatever the existing situation is, which may or may not be death within 6 months, or imminent death (what most people think).

So sorry for what you are dealing with and it sounds like it was relatively sudden with the grand mal.

So sorry for what @momofsenior1 and @MaineLonghorn are going through. My mother died 2 weeks ago and her final 6 days were very difficult for me. My mother was well cared for and was comfortable and peaceful, but for me it was extremely stressful. I wasn’t sleeping well, couldn’t really concentrate, and kept waiting for the call. My mother outlived all the estimates I got (“it could be hours or a couple of days”, “within the next 24 hours”) which prolonged the stress. Two weeks later, I’m still in a bit of a fog.

My thoughts are with everyone negotiating this phase of life right now.

@shellfell, I’m so sorry. Yes, the waiting and unpredictability are brutal. I’m glad her last days were peaceful. I will be thinking of you!

I decided to get plane tickets to head down to Austin on Monday and stay for a week. I booked Southwest, so I can always change the trip if I need to. My sister says that Dad seems a little weaker every day and sleeps longer, too. We’re afraid his CO2 is building up again (he can’t breathe out hard enough to get rid of it, and his BIBAP mask doesn’t seem to be working right, even though hospice keeps coming out to fix it).

I stayed up until 5 am two nights ago and 3 am last night, getting out a project. I feel very fragile, so I know I need to take better care of myself. Today I’m taking a bus down to Boston to be part of an advisory panel tomorrow for a drug manufacturer that wants to develop a med for the negative symptoms of schizophrenia (blunt affect, zoning out, lack of ambition, etc.). I signed up for the job before everything went south. I signed a contract and they’re paying me for my time, so I can’t cancel. I figure I can sleep on the bus and crash in the hotel tonight.

@MaineLonghorn, you have so many things on your plate. I’m sending thoughts for strength as you do this advisory panel, and for dealing with your father as well as your son. Sending thoughts for peace for all of you and for a peaceful passing for your father, at just the right time.

@momofsenior1 I’m also thinking of you as you sit vigil with your mother. I’m so glad you know she is aware of your presence. I’m sure you are a huge comfort to her. Peace to you.

@shellfell, my condolences to you. Be gentle with yourself. My fog lasted quite awhile. There are so many things to do after a loved one dies. Sometimes the feelings don’t hit until later. May your mother’s memory be a blessing to you.

@shellfell I’m so sorry. Wishing you comfort and peace.

We’re supposed to take Son back to his apartment on the way to the bus station, and now he tells me he feels horrible - “1.2 on a scale of 1 to 10.” Good Lord, I don’t want to be a grownup anymore.

How much more can you deal with! Wish there was more we could do for you than offer virtual hugs.