I have a friend, now with her Mom in Chicago, where the very independent minded (and cranky-always) Mom recently fell, broke her pelvis, another bone, and they found a mass. Somehow, I think they still think she will go home and live independently. Mom is 90+ and will not accept “strangers” in the house. Not sure how this is going to work.
A friend’s late-60s wife had a bad stroke in May and still can’t walk, maybe they are trying a rollator this week? She’s due to be discharged from rehab next Friday. I’ve advised an elder-care attorney to see what might be arranged for finances. I suggested have a meeting now to see what they might need to do in the future. I really think they need advice now, but was trying to soften the blow. I really don’t know their finances, but they were self employed and may not have the financial/insurance structures of someone who had a corporate job.
And DH’s best man is in the hospital with ALS. His LinkedIn shows he just changed jobs in April. Many are shocked at this turn of events. Age 67. There really seems to be a question of who is in charge. (Another friend’s husband died of ALS in his early 60s in July).
This is true. And there is still a risk of aspiration anyway…until that feeding team or whomever determines what the issue is and how to least invasively solve it. For example…some folks need a certain consistency of foods to avoid aspiration…and nothing else. A diet can be created with the help of a nutritionist…if that is found to be a helpful thing.
I’m so sorry. I’m going to suggest that someone have the conversation with your dad again about hospice. A medical professional he trusts followed by you or your sister. My dad very much wanted to live, was still cognitively sound and could walk on his own, read, etc. He very much wanted to attend some family weddings/graduations, etc. He was a huge believer in modern medicine and its power to heal him. But, in his case, he knew that dialysis would take away his quality of life and he chose hospice instead. He lived two months on hospice and never wavered. I’m not sure I could have predicted that would be his choice but it was the right choice. He did need “permission” from us to choose it. He would have gone on if we had strongly wanted him to. But it would have been the wrong decision - another few mouths maybe, probably way less pleasant. I know your dad has had some real miracle cures, but a stomach tube seems like a bridge too far to an outsider who only knows what you’ve said here. I think someone needs to have that conversation with him when the time comes and make sure it’s what he really wants.
My mom had made it abundantly clear that she did not want a stomach tube - it was listed on her advanced directive as a no-go - so it made it easier for us when that decision had to be made. But she made the decision herself. Every individual views things differently, and it’s important to allow them the choice as long as they are able to make the choice.
H has his best friend who had a wife who had a feeding tube — for 5 years. She was unable to talk except for one day after 5 years when was she was given a medication for excessive perspiration. At that time, she said she wanted to go home from nursing home and die in her bed so that’s what her H told facility & arranged for.
True. And he needs to stay sitting up 45 min after eating, and tuck his chin or swivel his neck when swallowing. They need to determine a thickness for liquids which may be suitable.
Do all the reading you can and see if hospital follows up on it. And he can’t be sleeping flat on his back.
And I’d really look into why he’s sleeping all the time. That can be related to the formula used if it’s recent and connected to the start of the ng tube.
I’m not a doctor but I’ve worked in hospitals for way too long in my life to trust them to fully take care of my loved ones without a bit of oversight. Nobody knows your dad like you do. His sleeping (for example) may be just “an old person” thing to young nurses/doctors and it gets ignored. You may be the only one who can tell them differently.
And while others are quick to jump to hospice as the easy answer I ran into personnel who think of it as “you’re old and it saves us money”. They can bring it up all they want but nobody needs to feel pressured. Just sayin’
That’s the very definition of a good news/bad news kind of day. I’m sorry. Do they think the sleeping is related to the oxygen?
It’s hard to face hospice, or a feeding tube. Maybe the way to frame it is that hospice can be changed if you all decided it wasn’t the right choice after all – but the tube, is that reversable? What does his advocate think? How are YOU holding up? Here’s a virtual hug…
Preferred video chatted me from Mom’s room – she’s cut holes in her clothes with her new scissors – and she didn’t recognize me at first. Later on in a store, the clerk asked if I was having a good day and I started to cry, and bless her heart, she came and gave me a hug.
H & I are still a bit traumatized from his mom’s behavior on Tuesday. Besides being extremely lethargic and rambling incoherently in her sleep, she was combative when we tried to move her at all. The pièce de résistance was when she mooed … she was not quite awake, but she mooed very loudly and angrily for too long. The hospice tech was there, so she called the hospice nurse. While waiting for the nurse, her PT stopped by and was unable to wake her - he said that he hadn’t seen her like that before. The nurse determined that it was very likely a UTI. It’s amazing how quickly it changed her behavior. We’re glad that the UTI is likely the cause, but it was disconcerting to see her that way.
The thing about a feeding tube is that once it’s inserted, it’s very difficult to get consensus to remove it, which is why H’s buddy’s wife had hers for 5 years, even though she was trapped in her body and became bedbound.
We just got word that MIL’s hospice is considering discharging her from hospice because she has been on it 4.5 years. She has almost died a few times, and her life was miserable until we found her current hospice a little more than a year ago. This hospice is so good, and their care has led to her doing so much better … better being a relative term, as she is 99, has a lot of trouble seeing & hearing, can stand for a couple seconds to help transfer to/from a wheelchair but isn’t strong enough to walk, can’t do anything for herself … but she currently isn’t considered near death, so I guess they might end the services that have actually allowed her to be considered no longer in need of them. It’s so disheartening, and local will try to keep hospice, but we are aware it might not work. H said that he expects she will go downhill in that case.
Tender, loving care! She gets showers from the hospice tech, which always happen (as opposed to the AL staff showers that other residents say they don’t necessarily get - but her aide can shower her), PT & OT (we will pay out of pocket now that we know how much it helps her), good medical care that comes to her, and hospice staff that stop by to lift her spirits regularly. It’s hard to explain, but this group of professionals has been so amazing. We can deal with it, of course. I think the hardest part will be not having the medical care that comes to her.
Good hospice is such a gift. My mom’s wasn’t great, but we had been through it with my dad, whose hospice WAS great. We already knew the ropes thanks to our good first experience.
Local doesn’t want to move her at this point. She has moved 3 times in the last 4.5 years, and it’s really hard on her. There are a lot of pros and cons to her care, but at 99, change is especially difficult. We know that she may need a higher level of care down the road, but we don’t want to do it unless we have to.
Dad has been moved from ICU to a regular room. As usual, he has rebounded remarkably well and amazed the doctors! We’re going to see if he even needs to go to the long-term acute care hospital - maybe rehab would work.
Thanks for the thoughts about hospice. We will definitely talk to him about it. It’s my guess that he will say he wants to use the feeding tube, but then he might feel differently as time goes on.
Today, both he and my husband are having MRIs. Trying not to cry. I told my husband about the 8:45 am appointment last night. I got up early to go to the gym - I had told him I’d get back at 8:15 and we needed to leave immediately. I returned at 8:10 and he was running on the treadmill!! So now it’s 8:18 and he’s in the shower. He’s just so incredibly forgetful. Ugh.
See what it will take to keep her on Hospice. Some do stay on Hospice a long time, and with age 99 and lots of close calls, Hospice has to follow rules but sometimes persistence pays.
Many on Hospice are very short time because some should have been on Hospice sooner. Some are days. My brother took my mother to hospital ER (the procedure in their county for 3 MD evaluations for Hospice) on Monday - she was admitted and IV antibiotics for suspected infected gall bladder, home to Hospice on Thursday (got hospital bed delivered and set up), sister and brother at mom’s bedside with her actively dying, and she was dead by Monday. So on Hospice care 5 days. Mom was 77 and with dementia, but had a sudden decline, and when my brother told me I talked to him about Hospice and Hospice evaluation.
I told my husband about the 8:45 am appointment last night. I got up early to go to the gym - I had told him I’d get back at 8:15 and we needed to leave immediately. I returned at 8:10 and he was running on the treadmill!! So now it’s 8:18 and he’s in the shower. He’s just so incredibly forgetful. Ugh.