Or something similar. My MIL ate well today, I think she was excited to see H, but has told H, some how, that overall she is really not feeling good. Now, her breathing is rapid and HR is high. O2 levels are low and her fingers are turning blue. The care givers, who it turns out are not really nurses, are gone for the day.
I just don't know what all this means other than she has turned this corner. I hate not being there.
My mil passed this morning. H had been sitting with her, holding her hand and went to call me to tell me her breathing had slowed and when he went back upstairs she was gone. I know this is hard on all of them, but if you can a little something extra for my FIl, I would appreciate it. They were married nearly 51 years and truly best friends. We are going to try and see if will come back here for a time. Thanks for all the support.
I’m so sorry that she has taken this turn. Is there an after-hours line that you can call? Is she on oxygen? If so, they’ll probably have you turn it up (unless she has an Advanced Directive against that.) Blue fingers means she’s not getting good circulation there, and that’s related to the oxygen.
I’m glad that your H made it there to see her and spend time with her. I’m praying for him and your whole family as you walk this path that no one wants to be on.
I asked about a DNR, not sure what is in place. She has a ventilator using a mask, but i think that is it and its job to help pull the CO2 out since she was starting to not do that well and it was making her feel terrible. not sure about oxygen.
Is she on hospice care? They will send nurses at any time to you if so. Hospice was a godsend at the end of my mom’s life care and don’t ever hesitate to call or ask for assistance.
Is she on hospice care? They will send nurses at any time to you if so. Hospice was a godsend at the end of my mom’s life care and don’t ever hesitate to call or ask for assistance.
I just asked about that and no. I told him to tell his dad that they need to call them in. Tomorrow. I think, weeks ago, they did call them. The hospice nurses that helped care for my Gram at the end were angels. Honestly, they were amazing for us and most important, for her.
I think my FIL is a bit scared because she has made this turn and nothing he has done in the past is able to get her back to "normal". Her breathing is now even more rapid.
Is she on hospice care? They will send nurses at any time to you if so. Hospice was a godsend at the end of my mom’s life care and don’t ever hesitate to call or ask for assistance.
I just asked about that and no. I told him to tell his dad that they need to call them in. Tomorrow. I think, weeks ago, they did call them. The hospice nurses that helped care for my Gram at the end were angels. Honestly, they were amazing for us and most important, for her.
I think my FIL is a bit scared because she has made this turn and nothing he has done in the past is able to get her back to "normal". Her breathing is now even more rapid.
I am so sorry I would call the ambulance or get her to the hospital. They can bring in the social workers and hospice team at their end and at least walk him through.
My father in law hated that meeting because he thought the family was giving up on him but he went into the hospital and never got to come home like he wanted because he wouldn’t sign off on it. My mom on the other hand got everything the way she wanted it by accepting hospice at home with us figuring out her care. We lost both of them in the last year and were 8 hours from my FIL and 3 from my mom so that is so hard when one spouse was helping and the other was holding down the home life.
I am so sorry. Who is overseeing her care? A neurologist? An ALS Clinic? Her primary care doc?
I am not a medical professional, but worked for an ALS nonprofit for many years. Our patients were assigned a social worker/caseworker who would guide the family through the process and act as a liaison with the neurologist to help determine when it was time for hospice. It was not generally a decision the family had to make without guidance.
Does she have a care team or anyone at the doctor's office who can help with next steps? I am surprised that they would send her home with a ventilator but without instructions on what to do if there are signs that it is not working. If there is not an emergency number to call at her doctor's office, I think I would try to get her to the hospital.
They do have hospice care since the fall, I think, those are the caregivers who come in during the day. (I asked H all this a little while ago). I mentioned they might want to add night care as well. They do have meds to give her for anxiety, but it is seen as an in case of emergency. I think we are there and perhaps, my FIL is in denial a little bit.
I do think they need to verbally tell her it is ok to let go. I think she is fighting so hard and her body is just tired. It is shutting down, but they need to let her know it is ok. We did that for my Gram.
This is all tricky, because were it my family I would have no issue asking these questions and insisting if need be, but that is not how they do things. So, I hope we will get more answers tomorrow. I hope they will give her the anti-anxiety meds. She's a physician. I could see her not wanting to go to the hospital. Right now she is in a hospital bed in their den which has windows all around it. She is in the home she helped design and picked everything to make it exactly how she wanted. I don't see her leaving. I think even in the fall when she first took a pretty big down turn, she did not want to go.
In my (albeit limited) experience, what you described in the OP does not sound like hospice but a home health aid. I have only seen hospice care provided by nurses, and there is an understanding/expectation that you can reach someone 24/7.
She could absolutely receive hospice care and remain at home, though.
I'm sorry your H's family is going through this and that you feel helpless. It sucks for everyone.
It sounds like she is having some significant pain or anxiety. I really feel like your DH should push for her to receive some of the anxiety medication at a minimum. It would be so beneficial if they could get her examined ASAP, get her comfortable.
My grandmother was given anxiety meds regularly towards the end, which was a comfort to us. Hospice was also very clear in speaking with us on the "stages" of dying and that helped us with expectations. I hope they are able to provide answers and some guidance for going forward tomorrow.
Post by SusanBAnthony on Feb 24, 2020 6:01:03 GMT -5
It sounds like the daytime care giver is not from hospice as they do not provide home health care except perhaps for a short visit. They would just have nurse visits and family would provide care.
I know it's not your family but wtf to a doctor not being more clear about what she wants and also your H needs to call hospice today.
I'm sorry she isn't doing well. Hospice will be able to put her comfort first and keep her home if at all possible.
I don't have any advice or insight, but I just wanted to say how sorry I am that you are all dealing with this. You'll be in my thoughts.
ETA: Just to be clear, Hospice care is for anyone who has moved on to palliative treatment, which it sounds like where your MIL is. I got to experience Hospice Care with all 4 of my grandparents, 1 in home, 1 in the hospital, 1 in a facility, and 1 in a nursing home. Ever single time the nurses were amazing and honestly such a godsend for my family. It does sound like right now your MIL is receiving home health care, so hopefully today the family will be able to put the Hospice care in place. They will ensure that she is comfortable and that all of her needs are being met.
"Why would you ruin perfectly good peanuts by adding candy corn? That's like saying hey, I have these awesome nachos, guess I better add some dryer lint." - Nonny
I’m so sorry for your loss. I will continue to pray for all of you.
If your H mentions being upset that she passed when he stepped out, please tell them that happens often. I firmly believe that people have a lot more control over their passing than we think. It was likely her last opportunity to “protect” him from that heartbreaking moment. I hope he’s able to see it as her final gift, not that he wasn’t there...but that may take time.