@MaineLonghorn, we are thinking of you and wishing you and your family peace and comfort during this time. I am so sorry.
With regard to my dad, this hospital said it will use mittens and restraints and will only have a sitter for patients who are suicidal.
The geriatrician said if he pulls out his O2, yes he will die but that’s ok!?!!! That’s NOT suicidal! I guess because he’s 95.
His platelet counts are very low tho (even with transfusions), so that may be what ends the struggle.
@MaineLonghorn and @HImom my heart goes out to both of you and your families.
@MaineLonghorn, keeping you and your family in my thoughts.
@MaineLonghorn your love and dedication to your dad has always been evident. Sending prayers that your son will be stable and that you can just focus on your dad and Texas family for the time being. Take care of yourself too ok?
@HImom- All the best to you and your family. I hope the hospital can create a situation that allows family members feel confident enough to get some rest. You have a lot on your plate; take good care.
@MaineLonghorn - Sending good thoughts as you navigate the complexities and emotions of two ill family members. Your father sounds like a remarkable man; you are doing a lot to help both of your parents. Wishing you peace.
Thanks, everyone. I’m not sleeping tonight. I texted my son just now, because I know he’s on duty at the hospital, watching over Dad. I asked how Dad was doing, and he wrote back, “Great. I’m rubbing his head as we speak.” Makes me want to cry! My son has been a bright spot in the middle of a lot of sadness.
@HImom, may I suggest that you look into the State of Hawaii laws regarding physical restraints on elderly, hospitalized patients. They are quite specific regarding how the order is written, who applies the restraints, how often they are checked and documented and how long they are applied for. They also must not be used for the convenience of the staff or hospital.
May I gently suggest that you look at hospice care that your dad may receive in hospital. They will focus on his needs and what comfort measures may be taken to relieve his anxiety, restlessness, pain. They are also a wonderful resource and comfort for the family. Sending hugs.
We didn’t ask for a sitter in the hospital: it was provided by the hospital. If I showed up for 4-6 hours, the sitter was pulled to help on the floor. After a while I tried not to stay that long so the sitter would continue. My mother was delirious and kept saying, over and over and over “I want water” and pointing to her tongue. It was horrible. None of us could even talk to her.
As for hospice, in our experience, hospice may suggest considering pulling the O2. I don’t really know. Perhaps it is a comfort measure. I do know they suggest pulling life support of course. We found that once my mother was on Hospice Medicare, many medical procedures and treatments were no longer covered.
Hospice would not discontinue oxygen use. Each hospice has different sets of rules and if you agree to hospice, there are procedures that would not be covered. You will, or should be informed of this at the outset. If you decide on procedures that are not on the list, you can remove patient from hospice thus ensuring coverage, but it would be unlikely they would take patient back.
Wow, the hospice information is helpful. My sister is talking to hospice today and I imagine I will, tomorrow. Sister was hoping for more guidance regarding how to tell my mom, niece, and nephew, but she said they weren’t too helpful there - probably not their area of responsibility. I’ve been pretty upfront with my kids, although of course I didn’t tell my son in the hospital too many details.
My nephew is a college freshman and my niece is starting her first post-college job in Santiago, Chile. These are the two who lost their older brother in 2015, so my sister is worried about how they will handle the news.
There are also options for hospice. One may be affiliated directly with the hospital, but that doesn’t preclude an outside hospice from coming into the facility and rendering services. So sorry to hear hospice was unhelpful, that is very much part of how they are supposed to assist families. Perhaps the way the question was worded? If you aren’t happy with them, see if another hospice organization is available. You can be very upfront with them in what your father’s and family’s needs are. Hospice should have a social worker, chaplain, nurse, aides as members of their team.
@MaineLonghorn Ask your sister to request a meeting with the hospice social worker. They will help her with guidance on how to talk to her children. Usually the initial appointment is done by an nurse who is going to be much more focused on the physical stuff. Hospice will also have bereavement support as well.
@momofsenior1, thanks. That’s good to know.
Re Hospice, do check out all in the area to select one you feel most comfortable with. I chose a non-profit in the area for my dad based on reviews and the info I found on website about staff/professionals. Had he been closer to home I would have chosen one I knew from working with them. My sister was several hours away but she spoke with the Hospice for our mom. My sister, a therapist, is better at making arrangements. Sadly soon after, my sister had to make Hospice arrangements for her husband. My sister went with hospital’s recommendation for her husband and had heart wrecking Hospice problems the weekend of her husband’s death. Sadly all hospices are not equal.
Prayers / good thoughts to all
In our experience, you can go off Hospice Medicare for one day, have a procedure and go back on. That probably varies with state and facility and hospice, but we were told we could do that.
+1 for noting that there are different hospice “rules” for different companies. And that you need to check in to their main office to speak with more than just the nurse.
Hospice was a big help to my mom and she was on it for almost 18 months. THEY provided medicines for a UTI for example so Mom didn’t have to go to the hospital for it. So it is not true that hospice won’t do “healing” treatments; and medicare paid for it.
For my Mom, it was interesting that medicare paid for hospice to come help Mom shower, but wouldn’t pay for an extra aide (while Mom was in Memory Care) . So when Mom was on hospice, she got more help and more attention.
I know that her circumstances are not what HIMOM and Mainelonghorn are in the midst of dealing with. So I am sending support and energy for their steps right now.
Yes, hospice will pay for and treat anything needed for comfort/palliation. UTIs are uncomfortable so they will treat. Same with the utilization of oxygen. What isn’t covered are curative or aggressive treatments for the underlying disease.
You can come off hospice but you will lose a benefit period when you come back on. With someone with an illness that doesn’t have a predictable disease progression, that isn’t ideal, and it makes sense to wait until you wont need to come on/off services.
Thanks @ECmotherx2 and everyone for all your support. I have read the “medical rights of patients” for the hospital where dad is receiving care. It says upon MD orders, they will use least restrictive physical (or chemical) restraints.
Dad is showing increased interest in everything and wants to eat and drink, though he needs Speech Therapist eval on that as well as ST eval on why he can no longer talk.
He seems to want to go — leave the hospital, as he did the other time he was hospitalized years ago.
Think about @HImom and @MaineLonghorn today. I finally cleaned out under my dad’s sink where all his meds were stored. While I knew he was on a ton of medication, until I helped load his pill box last year when he left the hospital for the next to the last time, I didn’t really know what and how much. Today while looking to see how to dispose of the leftover medication, I am a bit shocked by the quantity of pills some doctors prescribed.
For as long as I can remember, dad has had a horrible back and dealt with much pain. He actually went to my pain management/anesthesiologist that I went to, and a friend of my husbands. As this doctor worked for the same hospital as my husband, he didn’t want my dad to call the office for more medication and be told he had to come on for a visit that wasn’t needed. He would write an Rx for dad with 120 percocet or similar pain medication. I mention to the doc that I worried about dad taking too many, but he was not worried; he just didn’t want dad to be forced by the office people to be seen. Luckily, the bottle had plenty left.
I do think, especially with the elderly, Dr A has no idea what Dr. B prescribes and there is a huge chance of overlapping medications and medications that should not be taken together. My dad up to the last 6 months was great about taking a typed list of his updated medications to each and every doctor’s appointment, but I can tell you, many don’t even pay attention to the list. The intake nurse enters the meds into the EMR and the doctor prescribes whatever he wants. Again, dad’s pharmacist was very good about mentioning to dad that Dr A sent in an Rx for X, but dad can not have it because he is taking Y.
I had wondered a year before dad’s death if some of his issues were medication related and we talked about it a bit. He seemed in control, so I didn’t intervene, but in hind sigh, which I had. Moral of the story, take a look at what your parents are taking, and make sure they are taking what they should, when they should.