Parents caring for the parent support thread (Part 1)

So sorry. That really does sound unsustainable if this goes on much longer and resentments/conflicts between family members could erupt if someone is pressuring others to do more than they can do/want to do, given other obligations. Is there money to hire someone, perhaps for overnight shifts?

@HImom I’m so sorry you are going through this. Has anyone at the hospital mentioned a one on one aide? My dad needed that on occasion after his brain injury, and there was an aide who would sit in or near his room and redirect him if he got agitated. I don’t think the hospital should have to rely on family for more than a day or so, but if you are still there, they have no incentive to put another solution in place unfortunately.

Have they definitely said they will restrain him?

Also, I know you mentioned he is not in good shape. Is this perhaps a situation that hospice could assist in? As we all know, hospice does not mean death is imminent, but it sounds like he is in some decline and their services may make his hospital stay more manageable.

At the very least I would consider hiring aides to sit with him at times. That is definitely not sustainable, what you are doing. I am an only child and I could not be at the hospital 24/7 after the first day. I simply could not.

There are 7 of us kids plus6 of us have spouses, so we have managed to cover it so far but everyone is pretty tired. I did suggest hiring someone to watch dad but family members didn’t seem interested. Maybe we can revisit.

Will ask my friend who did hire someone to watch her grandma in her home so she could get at least 2 notes sleep when grandma needed someone watching her 24/7.

Have never heard of hospital one on one aide. Will call my insurer to ask about it.

Shucks, insurer says nope, no reimbursement for such service (one on one side). We would have to pay 100% out of pocket. No insurer nor Medicare A nor B benefit. Medicare only pays for people to come to perform medical services.

The hospital put the one on one aide in on its own. I guess dad was agitated from his TBI and he was bothering the nurses. I do not recall any extra payment or how it was handled.

I later had to hire a private duty aide when mom was hospitalized (for dad) because the AL staff could not monitor him enough. That was $$ but essential. I really don’t know what would have become of them if we could not have afforded this.

Check the pricing that would apply to you.

@HImom your dad’s situations sounds so much like my dad’s. I’m so thankful my son is there and takes the overnight shifts at the hospital. There’s no way we would be able to cover 24/7 without paying him and the other caregivers. It really is asking a lot.

@HImom my mother was pulling her nasogastric tube out and also lunging for water, which would have choked her with the tube. The hospital put a 24 hour aide in her room and paid for it. It is worth asking. It is liability for the hospital. As long as family is there 24/7 the hospital won’t consider it :slight_smile:

What @compmom said! Hospitals employ aides or “sitters” to protect against liability and to assist their nurses etc.

^^ Agree with this. However @HImom you mentioned previously that many family members were visiting (at the same time or throughout the day) - the staff may see all these people are ample people to stagger the day/night hours to be with your dad.

So you may have to make clear your family’s ability to assist or not assist with night hours for your dad.

You have spoke so fondly of your parents - I’m sorry to hear you are dealing with this poor health now.

@HImom - The last time my mom was in the hospital, they had a “sitter” for her because she kept trying to pull out the NG tube. I stayed with her the first 3 days around the clock and when I had a breakdown, the staff sent me home and said they would have someone with her, which they did. After that, I only came during the day and they provided the sitter at night. There are many situations where family isn’t available and as far as I know, hospitals are not allowed to physically restrain patients anymore.

@himom You have my sympathy. We went through this. I came to the hospital one morning to find my mom in mittens to keep her from pulling tubes out. At that point I was the only one in town and had to be with my dad, too. Until help came, I kept long hours bedside and she wore the mittens (but was not restrained) when I was not in the room.

I was on speakerphone while the medical team spoke to my dad, sister, and advocate. Long story short, the measures needed to POSSIBLY keep Dad alive longer are just too arduous - tracheostomy and then a lengthy stay in rehab to attempt to get strong enough to qualify for a surgery with a high mortality rate. So Dad has opted for hospice at home. I’m actually relieved he made this decision, because I think it’s the right one. I’m flying down to Austin tomorrow. He also agreed to a DNR order, so I think it will be a matter of weeks based on the past few months of breathing difficulties.

My son is still in the hospital so it will be hard to leave, but I don’t know what else to do. Boy, this sucks.

I’m so sorry @MaineLonghorn. I hope your dad will be as comfortable as possible and that your son improves quickly. The timing of this really blows. :frowning:

Oh, @MaineLonghorn, I am saddened, but relieved to read that this decision has been made. Your dad sounds like a remarkable man. Wishing all of you peace and strength for this next phase.
Take comfort that while you are away, your son is under professional watch and care.

I’m very sorry @MaineLonghorn

I’m so sorry @MaineLonghorn. My thoughts are with you and your family,

Oh @MaineLonghorn I am so sorry. I had a parent in hospital with a life threatening condition at the same time my daughter was in a severe depression and it was a difficult situation all around (not sure your son’s issue, and it doesn’t matter. When your kid is not well, it is heartbreaking)

I am praying for an easy journey for your family.

@MaineLonghorn — so sorry! You have my deepest sympathies. This is all so hard! Your dad had an amazing life and accomplished so much! You and he should be proud of all he did, even though he couldn’t complete all he hoped.

Wishing you and your loved ones the best through this tough time.