@deb922, your mom may surprise you. My MIL was put on hospice 3.5 years ago. She has been on death’s doorstep several times, but she keeps coming back. It hasn’t been all sunshine & roses over the years, but she has had a lot of good days. We’ve had a switch of hospice companies a few times -after a period of months, some of them wanted to over-medicate her as if to hasten the end (saying she was in pain & needed strong meds). We finally have a wonderful hospice service that medicates appropriately and provides her with PT and OT.
What isn’t wonderful is her AL situation, but SIL & her H are the locals and they aren’t going to switch ALs. We have been trying to get them to hire more aides, because the current one can only do ten hours a week (2 days). They are supposedly trying to get coverage for five days, but my BIL, who is the one who actually is working on it, has a million excuses. We gave him the names of the aides someone we know from the area recommended, but for some reason, he refuses to contact them. It’s frustrating … the AL staff is not giving her adequate attention, and MIL can afford to pay for the additional help. It’s tough not to have any control.
I’m no expert, but when my mom was ill I learned that the POA is void when the person dies. It’s only good while someone is alive. This is why it’s preferable to get things done while she’s still alive. Here’s one link with more details …
My father’s hospice nurse told us that it is not uncommon for patients to rally once the decision for hospice is made. The day after he was moved we thought we’d made a terrible mistake and she told us that is rarely the case w hospice.
Also our experience that some people cope by trying to make decisions, and some people don’t want to make any, and some people don’t want to decide things right away. Of course, those people always end up in the same room
It’s always hard to know how things will go. My huband spent 5 weeks in Boston while his brother was hospitalized. He expected hospice designation any day, found some nice hospice home options. After he had to fly home for a group of deferred medical appointments, another sibling was called saying BIL had been transitioned to hospice care…. ready to move elsewhere. During the two hour drive to the hospital, conditions changed such that he was too critical to move. He died in the hospital 2 days later.
A “rally” isn’t confined to moving to hospice. It is very common. Fortunately a nurse had told us about it so we were able to look for it. I’ve witnessed it in end of life dealings with my mom, dad, and aunt. My BIL too.
My mom was able to say good-bye, hear all the news, and was totally alert and cheerful before she was gone a day later. (hospital but she wanted to go home)
My dad (thankfully I recognized the signs and called everyone) visited with more energy for two full days with family and friends than he’d had for a couple years. It was a joy to see him his old self. He “held court” telling jokes and giving advice to the very end. Then he lapsed and died two-three days later. (home)
My aunt (lived out of state) was in a SNF when we got there. She “didn’t want to bother us” or we would’ve been there MUCH sooner (don’t do that to your family). But she latched on immediately to tell us everything we needed to know and wouldn’t rest until we’d written it all down and followed through to her satisfaction. Her only wish was to go back to her IL facility (her home). We made that happen and she died within the week.
My BIL who was in terrible shape and no question about his condition (at least to me) kept going valiantly until the end to tie up every loose end he thought was around. It amazed me
at the energy that took to provide those last rounds of help. Really an act of love to those he was leaving.
So it’s not unusual to have that rally but it is nice to be forewarned. It’s really a true gift.
And if you “aren’t there” don’t feel bad. Way too many people feel awful that they “stepped out of the room”, “took a break”, “went to the cafeteria” and then their loved one died while they were gone. Turns out that’s much more common than not.
My mom gave hugs and said “I love you,” to those of us fortunate enough to be in her room when she rallied. That included me, H, S, D, and a nurse. My sibs were a bit jealous but I told the of course she loved all of us. She died within 72 hours afterwards.
Mom’s rally was yesterday. She wanted to go back to her IL, told me in our last conversation that she would go to assisted living if she had to. She was able to talk, fight and be feisty to all of us. I even called her when I talked to her friends at IL, they were delighted to talk to her. As was she.
Fortunately for her, she won’t have to go to AL or a nursing home.
I feel bad, we were with her all day but left to go home and sleep tonight. If she passes tonight, I feel that’s what she wanted.
My niece told her as we left tonight that it was ok to go.
It’s weird how I feel, numb. My mom was a complicated person.
I’m forever grateful to my sister who was mom’s main caregiver at the end. I just wrote the checks wherever I could. So thankful that we always agreed on what course to take. Hugs to all whose families made dealing with their parent’s final moments difficult.
My mom died around 3am, when no family was present. I am sure she wanted to spare us all. Every time I saw her the last week of her life, I told her how much she was loved and how we’d all be OK and continue supporting one another, and she could go and be with dad in heaven when she was ready.
When my sister’s death was imminent, my 36 year old niece asked if she would be a terrible person if she wasn’t in the room when her mom passed. She was having a very rough time and needed a break and sleep. I told her that the last 36 years are what mattered, not one moment in time that night. I could see instant relief wash over her and she was able to go get some rest. My sister passed that night with me and our other sister with her. I truly believe she chose that time.
I was in college when my beloved grandmother died. I couldn’t bring myself to visit her in her final days. I had a need to remember her as she was before the end. I have never regretted my decision - it was right for me in that particular situation, and I know that my grandmother understood. OTOH, I felt compelled to be with my brother throughout his final hours (I didn’t even want to leave his side to go to the bathroom) - it was just a feeling that it was necessary. Every situation is different, and I think we instinctively react to what is placed before us. There is no right or wrong, and we just have to follow our hearts.
It is up to the person dying, if they want to ‘go’ w/o family in the room. My dad died once mom and my brothers went out - my sisters were at bedside and told him it was OK to go (dad died of cancer and he was hanging on by a thread but hanging in badly). Mom waited for my brother and sister to step away to the kitchen (she was in a hospital bed in the living room that was open floor plan to the dining room and kitchen) - my sister said that mom had a radiant face of joy/smiling. Dad died at age 64 and mom at age 77.
