Was contacted by the facility this weekend. Apparently 1poormom is requiring more attention than before, and they think it appropriate to move her into MC. Same cost, so there is no monetary motivation here. Evidently, they have to remind her to eat (though she can accomplish that task by herself), and she is sometimes having issues dressing.
I don’t particularly want to move her. That is always traumatic. But they do have a higher staff/patient ratio in MC vs AL. I have a few more questions, but it’s looking likely.
They also want paid escorts to go with her to her appointments, not just the driver. She has one appointment regularly that is pretty quick, but the driver is having issues corralling her afterwards, which messes up his schedule.
Was contacted by the facility this weekend. Apparently 1poormom is requiring more attention than before, and they think it appropriate to move her into MC. Same cost, so there is no monetary motivation here. Evidently, they have to remind her to eat (though she can accomplish that task by herself), and she is sometimes having issues dressing.
I don’t particularly want to move her. That is always traumatic. But they do have a higher staff/patient ratio in MC vs AL. I have a few more questions, but it’s looking likely.
They also want paid escorts to go with her to her appointments, not just the driver. She has one appointment regularly that is pretty quick, but the driver is having issues corralling her afterwards, which messes up his schedule.
When Dad was in the “Retirement Home” in Texas the community was mixed - some were just old, others were more or less immobile, and others were senile. Dad was all three*. Wheelchair confined, he could scoot around and visit the friends had made, go to his meals, etc. My sister and BIL lived close enough to handle outings as needed.
CNC
*So senile he didn’t recognize my brother. Talked a lot of gibberish. But he still played a sharp game of dominoes. (Dominoes is big in Texas.)
I don’t particularly want to move her. That is always traumatic.
I remember when you had to move her from her initial unit to the one she’s in now, and you had really resisted the move initially as you were convinced it would be traumatic. As I recall—and I hope I’m correct—it turned out to be a lot easier than you had feared. And I hope that this move will be a lot easier than you fear now. She’s confused in her current setting, and hopefully it will make things significantly easier for her being in a setting that provides her with more support, and consistent anticipation of her specific needs.
Sounds like she definitely needs an escort to accompany her to all of her appointments. It’s not just the driver’s time and extra effort that are issues, but eventually it will be her safety. The more confused she becomes, the more likely it is that she will wander away and get
lost despite everyone’s best efforts. A situation like that may—or may not—end well. And while it’s ongoing, it is terrifying. Paying for escorts is totally worth it, to avoid that possibility.
Good luck with the move. I’m hoping it will be a lot easier on your mom than you anticipate. But even so, it’s really rough on you, seeing this evidence of her further deterioration, and knowing she is getting closer to where it is ultimately headed.
I wasn’t as concerned about the second move because she requested it. She didn’t like the first facility. Of course, she has the same complaints about the second one (i.e. people stealing her stuff). It did make it easier to transition to AL since she was changing facilities.
This time she will remain in the same facility, but she will be aware it is “memory care” where they lock the door to that wing. Not that she wanders around much, but just knowing that option is removed likely will be a stressor.
BTW, and I know this may sound harsh, but I sort of hope she expires quickly. She was a proud woman, and valedictorian of Shortridge High. Now her quality of life is the best we can do, but it’s not great, and I can’t even imagine what it’s like to know your brain is melting away. I’d rather go quickly than experience that. I suppose at some point she won’t realize anymore, as alstro’s hubby almost certainly doesn’t. But it is a cruel way to go.
She is very old already. Hopefully she won’t have to live through the terror of not knowing who she is, where she is, or what’s going on. She’s already had enough terror. More than enough.
She is very old already. Hopefully she won’t have to live through the terror of not knowing who she is, where she is, or what’s going on. She’s already had enough terror. More than enough.
Dad knew (at least at first) that he was losing his grip. After a while in The Home he seemed happy. But he always had a happy, positive outlook. Mom would have not liked it at all if she were there.
I know this may sound harsh, but I sort of hope she expires quickly.
It’s intense, but to me it’s not harsh. You’re thinking of what her life is like for her, rather than not wanting to let her go because you don’t want to. These are complex and difficult decisions.
Now her quality of life is the best we can do, but it’s not great,
Those thoughts were part of my decision making in my wife’s final hours.
She had told me many times that she didn’t want to be on life support, with machines keeping her alive. After she had a couple episodes of very low blood oxygen (fell to 50% on two different occasions), she was no longer responsive. She became dependent on a bi-pap machine to keep her breathing. When the Dr. came around for his rounds with a team that final morning, we had a talk about her future. She basically had none. Machines could force air in and out of her lungs to keep her blood oxygenated and her heart beating. But that would be all there was. She was not going to recover from that point. The damage from the low oxygen episodes was too great.
In many ways, that made the decision to remove the bi-pap machine pretty easy. She would never have any quality of life at that point.
My brother was with me when I had to make that decision. Some days (maybe a month or so) later, he told me that if he ever had to do that, his hands would be shaking too badly to actually sign. And I get that. I fully understand that. But I somehow had the strength to sign the order. My religious faith helped, as did my understanding that she was basically already gone, but her body hadn’t figured that out yet.
I hope that when the time comes for you, that you will also have the courage and conviction to do what must be done, and peace in knowing you are making the right decisions.
what a powerful and moving expression of the issues, the emotions, and your navigation of the decision you faced.
Thank you. But to keep things real, this event is also the source of some ongoing guilt. When I look at it dispassionately, I know I did the right thing. But when the emotions kick in, I feel like I signed my wife’s death warrant.
I also wonder if I could have done more by getting her to the hospital sooner. We did wait over a day after the fall before getting to the hospital. She fell a lot in her last months and had a number of minor bumps and scrapes that were still a bit painful. At first I thought this was just another one of those falls. I had no idea she had actually broken a bone. It’s another of those “what if” points that haunts me from time to time - usually keeping me from getting to sleep at night.
But to keep things real, this event is also the source of some ongoing guilt… It’s another of those “what if” points that haunts me from time to time - usually keeping me from getting to sleep at night.
That is rough to learn to live with. You know that you did your best, but that’s objective logic. Not the emotional logic that keeps hauntinvery g you with “what if.” With how often she was falling though, I strongly suspect it was just a brief question of time till she had a fall she wouldn’t survive. So let’s say a day really might have made a difference this time. It wouldn’t have been for long. I hope you can suceed in shifting your focus to how much you did for her, and her quality of life, for so long—all of the physical and emotional support and love you gave her.
I don’t know about you, but I’d feel more guilty if I kept my husband alive on a breathing machine when he was all but brain dead. To what end? Likely just prolonging the inevitable decision. Or waiting days/weeks/months/years till she became totally brain dead (I’m having flashbacks to Terry Schiavo). I think nobody would want that for themselves–I sure wouldn’t. And your wife didn’t. You did the compassionate thing, the rational thing, the right thing.
I took care of my dad for the last 3 1/2 years of his life, I retired at 53, had about three weeks of retirement before his girlfriend booted him out of her house. It was right after he took her to Australia for her 80th birthday, he paid of course.
I spent 5 days a week 24 hours a day with him, living 90 miles away from my wife only home on the weekends. My brother did weekends. Do yourself a favor do not wait until they are too far gone. The worst thing you can do to an Alzheimer’s patient is to take them out of their familiar setting.
Once my brother said he was unable to continue our arraignment I set out to find a solution. His mother lived until 101, grandmother 104. I calculated he was 1.1 million short of funds, if he lived as long as his mother. I was able to find a first rate Memory Care facility that I was able to pay an extra $500 per month for a fixed rate of $5750 per month for the rest of his life. The average person will only live 30 months in a facility per my research. In that time they will go through on average $500,000.
Christine Benz with Morningstar has a very eye opening cost survey on nursing home costs.
My dad only lasted 3 months, he just gave up. Best wishes with your family member. It is the most horrible disease other then ALS a person can get.
I’d feel more guilty if I kept my husband alive on a breathing machine when he was all but brain dead.
I got the sense from Peter’s comments that, painful though the decision was, he knew that he was carrying out his wife’s wishes in taking her off life support. The sense of “what if” guilt that he hasn’t been able to shake involves what if had taken her to the hospital the day she had that last fall instead of assuming it was just another minor incident. What if he had not waited until the next day, when it was more clear that she needed attention.
Zraki: My dad only lasted 3 months, he just gave up. Best wishes with your family member. It is the most horrible disease other then ALS a person can get.
From what Alstromeria has told us, PPA ain’t no picnic either.
I got the sense from Peter’s comments that, painful though the decision was, he knew that he was carrying out his wife’s wishes in taking her off life support.
Correct. But there more to it than just that. There is some guilt or remorse for not trying to do something just a bit more. There is that sense of responsibility for having signed the piece of paper that led directly to her death.
I signed, the nurses started very high doses of morphine, the technician removed the machine, the doctor personally bumped up the morphine even higher, and an hour or so later she was gone. There is no going back, no reconsideration, no do over.
All of that has an impact on you. I’m not sure you can really prepare for those feelings. I’m not even sure I can explain it properly. But I talk about it because it helps me work through it all (at 12:30 am when I should be sleeping, but just can’t). You all are my group therapy, I guess. Perhaps this will help someone else. I suspect it is something you can’t fully understand until you are forced to experience it yourself. And I don’t wish that experience on anyone.
I may face a similar decision before too long. It’s scary. I so appreciate your posts about this, Peter.
My biggest fear is that my husband could be in pain and I can’t tell. Sometimes he puts his hand on his head or his heart, his leg, his foot…does it hurt? how? how much? what can I do to help? I just kiss it and caress him and hope that’s enough.
My biggest fear is that my husband could be in pain and I can’t tell.
I could jump in here and say that if hubster allows you to monitor his heart rate, pain often results in a higher heart rate due to the stress of the pain. But that’s best diagnosed with additional information, like limping or favoring a limb, refusing to do some action, changes in behavior, things like that. Perhaps thinking like a veterinarian would help. Their patients are notoriously non-verbal.
But I know that’s not really what you’re thinking. The best I can do is say that the rational part of you will probably know what is best. The emotional side may object, and will drive you crazy for quite a while. But eventually the emotional side will give in and allow you to accept whatever life delivers to you.
I think. At least that’s what my rational side is saying.
