Hugs @“Cardinal Fang” I am sorry. Getting more information before these decisions seems like a good choice.
@GTalum I am sorry for the loss of your mom. You have been bringing your parents comfort for a long time, may happy memories comfort you now.
@dietz199 I felt that way for so long. Then I posted the condensed version and the amount of support I got here was incredible. I needed it. Sometimes it helps to “talk” to folks that you have no history with and who are going through the same thing. In due time…
@“Cardinal Fang” I am sorry you are going through this. It is not easy at all. You and your siblings are doing your best. I am surprised they want to put an external pacemaker on an Alzheimers patient. Glad you are researching with google and here on CC. It is so hard to tell with Alzheimers disease what is causing what or the result of which. Do you all think the antibiotic caused the seizure or coincidentally occurred? I wonder about seizures and Alzheimers too. When you get more info I hope it helps you on how to proceed
@dietz199 definitely post even if exhausting as you might feel better just getting it all out!
@GTalum, you have been as loving and concerned daughter as any parent could hope to have. Peace and comfort to you as you navigate the next steps along this road.
@GTalum - I’m so sorry for your loss. Please take care of yourself over the coming weeks and months.
Thank you everyone. The last several weeks were hard watching my mom decline and holding firm to her wishes of not living with dementia. Mom was a kind, gentle, gracious, and humble woman. I will try to work on my “mom” personality.
@“Cardinal Fang” Something to remember with dementia, is that at each incidence, the disease gets worse. It also sounds like she “rallied” with your presence. My father does this each time a grandchild visits. The grand kids marvel at his clarity on the first visit over several days. The next visit, later in the day, or the next day, is never like the “rallied” visit. It exhausts him. I’m not surprised she had a medical incident with the strength she mustered during your visit. Capturing those moments of clarity are such a joy. But I also realize we can’t control when that will happen or figure out what happened to make it so.
I’ll have to say, I have new found sympathy for those who feel the need to bring mom to the ER or the hospital. It was hard to see my mom waste away knowing I could stop it with an IV, force feeding or even tube feeding. But I kept going back to mom’s wishes prior to dementia. I’m glad there were no hospital or ER visits in the last 2 years of her life.
Fortunately, she never had a seizure and I didn’t have to make that call. I would give a “no” on the defibrillator, but that is for my parents, not yours.
@readthetealeaves I think they suggested it because she is in the hospital. Life-saving treatments are what they do.
My mom rallied last week before I even got on the plane to go see her. It wasn’t me; she didn’t know I was coming. We’re convinced it was the restorative ice cream.
My mom loves ice cream. Two days ago I took her to the little cafe in her assisted living place, for some lunch. She looked at the menu, but she was looking at the breakfast part, and she said she wanted waffles. I gently asked if she might want some lunch item instead, but nope, she was insistent about the waffles. She may have dementia, and she may have garbled speech, and she may be unable to say more than about four or five words at a time, but by golly she wanted the waffles. So I ordered them. Then she said she wanted ice cream with the waffles. Oh kay.
She doesn’t eat much. I thought she might have a few bites, if I cut up the waffle for her. Nope. First, as I was off getting her some silverware, she ate up half of the bacon on the side and put the other half on my plate. Then she carefully cut a piece of waffle, applied ice cream to it, dipped it in syrup, and ate it. Her stroke has made it difficult for her to use her left hand, but she persevered with that waffle and ice cream. She ended up eating the entire waffle and all the ice cream.
After this latest episode, we wondered if she’d never wake up. An hour or so ago, she woke up and told my sister she’s a little tired. She’s a tough old bird.
@GTalum, my brothers and sisters and I are adamant about no feeding tube, and no forced feeding. I’m ambivalent about IVs. I know of people who have gone to the ER during endurance races, gotten IVs, then continued the race. It’s easy to get dehydrated by mistake. But if my mom seems to be refusing liquids and refusing food, which she is not doing now, then I hope we can recognize it’s time.
So sorry, GTalum.
@“Cardinal Fang” - I chuckled at your mom’s lunch of waffles and ice cream. That would be my mom’s kind of meal. She still gets a lot of pleasure from food, especially desserts, and music. I’m glad that there is still some joy in her life.
@GTalum - I am so very sorry for the loss of your mom.
Oh, @GTalum, I am so sorry for your loss. All I can offer is (((((cyber hugs))))) and reassurance that you are an amazing daughter.
@GTalum I’m sorry for your loss. I’m glad it was a peaceful passing. And I agree it’s a blessing that your father is unaware. I’m sending hugs and wishes for peace for you and your family.
@GTalum Condolences. My heart goes out to you and yours.
@“Cardinal Fang” My mother has no dementia but was hospitalized, seizing, and in a coma for the better part of a week. Neurologist said very low sodium, and dehydration was probably a factor (yard work on an extremely hot and humid day). She also had a UTI at the time and had just begun her course of abx to treat it. I have no idea about causality v. correlation. Every doctor she’s seen since is unsure of exactly what played into her illness, but more than one of them has used the phrase “perfect storm” about the contributing circumstances.
I, too, believe in the amazing restorative powers of ice cream. What a wild ride you’re on.
In the Lewy Body groups they call this “showtiming”: for the hospice eval, the physician, the other kids, they showtime and then crash.
@somemom love the term “showtiming.” @“Cardinal Fang” we knew when mom lost interest in ice cream, food refusal was serious. It was when we knew we needed hospice.
So sorry GTalum. I have been told that parents often die when their kids are not present. They have trouble letting go if we are there. Wishing you peace in your loss and best wishes in caring for your Dad.
Cardinal Fang, the medical “decision trees” that crop up along the way with dementia are so hard, and it seems each one needs to be taken individually. Right now, IV seems to be the right course, and doubts about the external pacemaker are warrented since there might be pain.
We also got our mother off hospice due to limits on medical options once she rallied, and we found she had diverticulitis rather than cancer. However, we have kept the MOLST form’s maximum limits (no transport to hospital, no IV’s at all, no artificial food or respiration) to give us flexibility.
We switched to a hospice organization that is also home care, and they offer three levels, home care, palliative and hospice. Palliative is also called “bridge to hospice.” Our mother is now on the middle range service with the ability to switch up and down and it is working well. We have the support in decisions without the rigidity of hospice.
Good to read the term “showtiming.” It is soooooo frustrating. I recently told a friend I feel like the guy in Mr. Ed, the one who saw the horse talk. I am the only one who sees the horse talk! My mother was diagnosed with moderate dementia a year ago, at a 10 day geriatric psych. facility, yet she just passed a hospice nurse’s Mini Mental Status exam. Argh!!! She looked at the calendar over the nurse’s head to see the month (she just wished her dentist Merry Christmas!). The three objects to remember were all on the hassock right in front of her. And the daily paper was also on the hassock with the president’s name. I think that she remains smart and canny in some ways, despite memory loss, confusion, and trouble understanding anything complex!
@compmom, I hear your frustration with the smart and canny person able to pass the test. I tried to get my mom’s Dr. to declare her incompetent to drive, so he gave her a test. When she passed (barely) 2 out of three, he let her go. I had to turn her in to the state near her birthday time to have them retest her. She failed the written test, yet continued to drive saying that her slip that said NO LICENSE was a temporary one.
But at the near end, when she rarely could speak, or remember anything, because she could still read (not comprehend, but read words), one hospice person thought she was just fine. ugh.
Showtime!!! The other thing is, should we feel honored that they don’t put on any shows for us?
We go to all the rehearsals for the show, build the set, handle the costumes, do the publicity, hire the ushers, but don’t get the performance!! 