Too late for me, but I have a few thoughts.
My mother passed away in March due to congestive heart failure. But she also had some dementia along with hearing and vision problems. She was 86.
I keep feeling sad because, although we knew she was in a decline, we didn't realize how steep that decline was, and people who were caring for her didn't seem to, either.
Since November she had been in and out of the hospital several times. They'd patch her up--get her body chemistry up to its optimal level, get her plenty of rest and oxygen as well as good socialization and she'd feel pretty good, then a few weeks later she was back to being more confused, tired and weak.
Just before her last hospitalization, the nurse at her assisted living facility was testing her for a bladder infection, but that turned out negative. They were just not seeing the forest for the trees, because in fact she was dying of heart failure. And having dementia she as not really able to articulate just how she was feeling. Just said she was too tired to do anything. She didn't want to walk, didn't want to eat, didn't want to get up out of bed.
Nobody was able to really sit us down and tell us that the end was near. I suppose since nobody really knew, they didn't want to go there. But looking back on it, she was dying. You always think it is a matter of getting a little more exercise, or rest, or eating properly--all the things we do when we are younger to feel better. But at some point it is over.
But here are some warning signs I can see now, in hindsight, some of which I learned at the hospice (too late):
1. In her last six months, her ability to walk became more difficult. They got her a walker, mainly so she'd have something to lean on as she walked. Otherwise she'd grab onto someone's arm or a handrail. With the walker she could go faster.
2. She stopped eating as much. Nothing tasted good, or she'd get upset and not be able to finish her food in the dining room of her facility. She felt rotten and didn't want to eat. This is a sign of someone who is getting ready to die. She went from 185 lbs. in the summer to about 153 in February right before she passed away. Her baggy clothes hid it, but the scales told the truth. Of course her caregivers were happy about the weight loss--good for her blood pressure, etc.
3. Her mental clarity declined rapidly, because I think it was tied to her overall cardio-vascular health. It was that kind of dementia--memory loss mainly, the ability to remember what had recently happened. She always knew who she was and who her family members were. But simple tasks became very hard to impossible. She forgot how to use email, forgot how to operate the TV remote, and forgot how to use the phone. I got her a phone with big memory buttons with the family member's name on it so that she could just push one button to call us.
4. Increased difficulty even talking--finding the words, keeping on track with what she was trying to say.
During those last six months we had moved her to a memory care facility, out of her other facility which had "attended care" but which was not enough. If I had known how close she was to passing away I would have said just leave her in her familiar surroundings. She spent half of those last few months in the hospital anyway, and that became her happiest place. She never had time to get used to the new place and didn't like it. Said she wanted to go "home" to the other facility. I feel sorry about that, but we didn't know. I would have guessed she had about a year left.
In the end the hospital recommended hospice, because she was not able to stay out of the hospital for more than a few weeks without falling apart. While in the hospital the last time, she was barely able to walk, even with help, although she had a few days of good mental clarity thanks to their attention. But it was time.
She entered a very nice Hospice on a Friday night. Family members who were nearby came to visit, and one of us was with her daily. On Sunday night or Monday she became almost completely unresponsive, and on Wednesday morning slipped away. One of my brothers and I took turns being there round the clock and I was there then.
On Sunday she had told me that she had the strangest dream: that my dad (who had already passed away) was in bed next to her and had his hand on her arm. I don't think she was aware she was near the end, so that was really something to think about. She thought she was still in the hospital and had forgotten that they'd moved her.
Maybe she should have gone into hospice sooner, and not have been subject to so many tests and treatments, the low-salt diet, the rehab facility they put her in for two weeks after one of the last hospitalizations. But hindsight is 20-20.
How is anyone to really know? I was also taking her to the dentist for work on her teeth, and she had a monthly injection in her eye for her retinopathy! All that could have been skipped, along with all the trouble and pain.
But I thought I'd like to write here what I've learned in case it helps anyone else. If your loved one starts going into a steep decline physically and/or mentally, especially if they stop eating as much, take it as a warning sign. (My mom went from having a healthy appetite to just picking at her food and leaving most of it on the plate. This started maybe 4-5 months before she passed away.) If they quite suddenly can't do as much for themselves, and especially if they don't articulate how they are feeling, look at the signs.
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