Hospice in our future?

Quilting brings calm

see 2/14 update to this update in the comments

Update on our situation:

While I was on vacation in Florida, Mom requested to go to the ER with chest pains a week ago today( Monday). She was promptly checked out and released because the pain was from her previously injured ribs which just have to heal on their own. Which we all knew. As of today, she doesn’t remember going to the ER.

Dad got tangled up in his oxygen tubing on Tuesday and fell. AL staff forgot to tell me until Thursday. It’s ok, he was ok and they were monitoring him.

We got home from vacation Thursday and I went to AL on Friday. Dad was in the recliner covered with a quilt ( the quilt was an unusual accessory for him). Wasn’t talking much, seemed fatigued. I was back out there today ( Monday) around 11. He was asleep. Office manager told me the nurse wanted to see me, so I went down to see her. She said Dad’s not eating or drinking much so she wanted me to pick up some Ensure. She said he’s not bouncing back after a couple days like he usually does. Being fatigued is common for him with his COPD and heart issues. We both agreed that he’s probably at the stage that hospice should be called. She would talk to Dad about it because he never agrees to anything I suggest. Paranoia runs deep with him

I had lunch plans, but I did their grocery shopping after that. Nurse had talked to Dad and he asked for my thoughts ( wow). I explained there was no downside other than he couldn’t go to the ER or to the doctor unless hospice okayed it without stopping hospice.

I’m not sure he totally understands 1) that hospice means treatment stops except for comfort reasons and 2) that he probably only has a few months left. I know mom doesn’t understand because the nurse told me she asked if the hospice benefits would be for her too.

A man from the local VFW chapter has been working with dad for a month or so applying for service connected disability benefits. He works for our state’s Dept of Veteran’s Affairs and said that eligibility rules have changed and that it’s possible the VA could rule Dad’s cancer and hearing are service connected and he could get some benefits- even though he only served during peacetime and didn’t qualify for Aid and Attendance. He was there today and will check into how hospice works with the VA( he’s only been employed at his job a couple months). I will be surprised if service from 1958-1961 is connected to cancer from 2004.

Any thoughts or advice on hospice or the VA?

JeriLynn66

QBC, VA. Can pay for Hospice if the Veteran qualifies, otherwise Medicare would pay. I would pursue a Hospice evaluation. The added support could be beneficial. More eyes and “boots on the ground” can’t hurt ❤️.

I’m an old retired Hospice nurse who believes in the program.

Quilting brings calm

@JeriLynn66

i plan on pursuing hospice, and I will cooperate fully with both them and the VA process. Thankfully I will be here for the next few months with no plans to be out of town until 4 days in May. I wondered how one service would affect eligibility for the other, so thank you for the response.

The reason I don’t know whether Dad understands his actual medical situation is that I wasn’t in the room when they explained hospice to him. The activities director came in when I was there later and she made a comment that muddied the waters ‘Hospice doesn’t mean you are dying’. That’s true in some diagnoses such as dementia. In his case, he has various other diagnosis that are terminal and I believe he’s reached the six month timeframe.

I’m somewhat concerned that he will balk at accepting hospice if he realizes why we are calling hospice in. He’s just so difficult to get along with and he believe everything the activities director tells him.

M1

Glad you got your time in the sun. I know you must worry about how your mom will respond to the loss of your stepdad. Hope they accept him and that they are helpful.....

harshedbuzz

@Quilting brings calm

I'm glad you were able to get the trip to Florida in.

What a situation to walk into; I hope it didn't completely negate the benefits of your time away. IME, care facilities are all about bringing in hospice at the earliest possible opportunity. It's free to them and can relieve the burden on the AL staff. They may even present this as a condition of remaining in their apartment unless they agree to fund additional private aides. I would expect the activities director to fall in line with getting dad to agree to hospice.

In your shoes, I would work on a Plan B for mom should dad pass away or need a level of care offered in a SNF. Are these available on their campus or would she need to move?

HB

Quilting brings calm

@harshedbuzz

The AL switched from an all inclusive to a service based fee model last year. She and Dad are rated at the lowest care needed - meaning no up charge from the base residency fee. The base fees have really gone up the last couple of years. Even though they have contracts that state an annual increase, corporate made additional increases due to the inflation rate. They are not affiliated with an MC- but there is one across the parking lot. There’s several in the 120,000 person town we all live next to.

To answer your question- she wouldn’t meet the medical criteria for an SNF unless something drastically changes. She wouldn’t currently meet the criteria for an MC rather than an AL either. She can handle her own ADLs. Capable of getting to activities and the dining hall. Only needs someone to be in the area for showering to help her in/out. There are several people that live there that require more help than she does. In addition, in January there were 12 empty apartments out of 50. I don’t think management will be in a hurry to have another one.

However, you are correct that I need to start looking into MCs in case I’m wrong.

@M1

It’s a 50/50 guess as to what her response will be when he passes. She could enjoy life more or she could rapidly decline. Their 60th anniversary is in June- but they’ve had a tumultuous marriage the entire time. He’s caused a lot of their estrangement from family.

harshedbuzz

@Quilting brings calm I was thinking more about dad needing to spend time in a SNF. End stage hearth disease and COPD might require a SNF-based hospice to keep him comfortable.

I would prepare for a downturn in her general level of function when he'd gone. Even though he isn't providing care, his mere presence in the apartment might be providing scaffolding. Hopefully, that won't happen, but it's best to know your options if it comes to that.

I am sorry you are facing all this.

HB

Quilting brings calm

@harshedbuzz

oh, I misunderstood. I believe the hospice the AL suggested is equipped to deal with his needs. They discussed things with him like a hospital bed, newer oxygen equipment than what he currently has, etc. They’ve provided care for multiple people at the AL until death. However I will be sure to ask about it. I know Medicare pays for Hospice, but I don’t know if an inpatient SNF hospice would be fully covered.

Quilting brings calm

Update:

The powers that be seem to think he will be accepted to hospice without any issue. I talked to the evaluator at 6:45 tonight and she was just then heading to the AL to evaluate him. She was supposed to be there during the daytime hours. She told me that his heart condition was enough to certify him- which surprised me. I thought it would be the cancer or the COPD. His heart isn’t really that bad - dilated arteries and a prior heart attack several years ago. Isn’t even on heart meds.

But I digress. I really didn’t want her to evaluate him this late in the day, but I left it up to him and mom. I told the evaluator I wasn’t there and that dad would prefer I not attend the meeting. ( He thinks I try to take over his control). The AL nurse had told me today when I saw her that I didn’t need to be there, that she would be/ but I’m sure she wasn’t there that time of night . So the evaluator called me back at 8:30. The meeting didn’t get finished because mom and dad wanted me to answer the evaluator’s questions - such as where will his current bed go if they bring a hospital bed. So now the evaluation will take place with some other evaluator at some unknown time tomorrow- which totally scrubs my schedule for the day. I had plans to be 30 minutes from my house in the other direction all day. That makes a trip from my plans to the AL at an hour one way. I told the evaluator I needed at least 45 minutes notice.

For all I know, they won’t show up until Friday. When I will be 4 hours away visiting our son for his birthday.

I know I sound like I’m whining and I am whining. However I have been physically, mentally and emotionally exhausted ever since returning from Florida. Most likely depressed since I feel as tired an hour after I get up as I do at night. Missing our younger son - I think I have moved from the denial stage of grief to the depressed stage - after 10 months

BassetHoundAnn

Reading through these messages I can only imagine how exhausted you must be Quilting. What predicaments to discover upon your return from what should have been a restful vacation.

On the subject of the VA... I recently applied for VA Aid & Attendance for my mom through a county Veterans Service Office (VSO). Omigosh, what an incredible help and a great resource they have been! I love the VFW. They've been a great resource for our family through the years. But when it came to filing for VA benefits our VSO was just outstanding. They knew all the rules, the regulations, the VA's quirks in regard to processing applications. They spent half a day with me going through the paperwork, filling out forms, scanning docs, submitting everything directly to the VA's computer system. Prior to that they spent hours on the phone with me answering my questions and telling me what documentation to assemble. They promised to monitor the application and work with the VA if the VA claimed they had not received needed documents, which they apparently often do thanks to their computer filing system's quirks.

Apparently there's a VSO in every county. I encourage you to contact the one nearest you. They will surely be able to answer your questions, if not help with your dad's application.

Quilting brings calm

@BassetHoundAnn

That is similar to what the VFW gentleman is doing for us too. He is involved with the local chapter, and recently became employed at the IL Dept of Veteran’s Affairs. He’s handled all of this - he started about a week after my knee replacement. Dad didn’t want to have me involved- he refuses to give up any control of anything. Currently waiting on an appointment at a VA doctor. Which would have already been made had Dad allowed them to contact me rather than himself. I gave the VFW person my contact info when he showed up Monday while I was at the AL. I don’t know what documentation he still needs - he hasn’t asked me for any.

Quilting brings calm

It’s official - he’s accepted into hospice due to his thyroid cancer in his lungs and COPD. Nurse believes the continuing pain in the upper left side below the armpit is either due to the way he is breathing or cancer related. We don’t know and won’t know now since his CT scan for Monday is now cancelled. She also feels he might slide into CHF too. He’s lost 17 more pounds since Jan 8th. Making a total of 35 from his weight last summer. Technically he is just a couple pounds underweight for his height, but we all know what it means. She got him to sign a DNR by explaining the physical injuries that happen when they do CPR on a frail elderly person, who usually ends up on a ventilator

No life expectancy timetable has been suggested. I gather they won’t say unless they feel he is actively dying.

GothicGremlin

@Quilting brings calm This is an awful lot to be confronted with so soon after a vacation. I'm glad you were able to get away.

My experiences with hospice so far have been excellent. It's like @JeriLynn66 says "more boots on the ground." I've been quite relieved that Peggy has more sets of eyes on her. It's taken a load off my mind.

I hope you have the same experience.

M1

Glad you got the consult qbc and i hope they are a true help. 35 lbs. Is ominous for sure.

harshedbuzz

@Quilting brings calm

I'm glad hospice was able to get him approved before your trip today. I hope the additional layer of attention can provide some relief for you.

HB

Quilting brings calm

No trip today. Winter weather. That’s ok. Will catch up on household things… such as income taxes

@harshedbuzz

The AL nurse told me yesterday that Dad’s being accepted to hospice meant he would not be required to go to an SNF when he gets worse. His final days would be at the AL. She was given the comfort pack of meds, and either she or the hospice nurse will be the ones to administer them.

mommyandme (m&m)

QBC, this is so hard, I’m very sorry! I’m glad hospice is on board for all of you. I hope your stepdads days going forward are peaceful and comfortable, You’re all in my thoughts.