The change in my mom during the pandemic was so severe. It probably would have been bad either way, but almost a year without being able to see us could not have helped. I feel like another facility lockdown is coming so I bought a Facebook Portal (yeah I know) so we can see her and speak even if she can’t, Shri g what’s about to come.
My mother-in-law is 73 and sadly is likely going to die in the next week or two despite not being completely bed bound right before her hospitalization. She's had long-term issues with having trouble swallowing before she was diagnosed with Alzheimer' and she's now basically not able to swallow any puree food or liquids and keeps getting hospitalized with coughing issues (aspirating on her own saliva). It's been a miserable couple of months since my wife is a wreck and I'm basically a single parent to my toddler for most of the week. I would not wish this on anyone, but I am glad that hopefully my MIL will finally get some peace.
This is where I’m at with my dad. I don’t want him to die, but I can’t imagine life is enjoyable for him anymore.
Yes, my wife is a social worker so she's been very involved for this reason. She's constantly advocating for her care, working the memory care facility and making sure she was eating properly as much as she could. Basically this morning my wife was told that her mother is okay on vitals but has been unresponsive and the hospital doesn't think they'll have a bed if my wife wanted to try and get her on a feeding tube, which the doctors aren't likely to recommended at this stage.
We did the non-responsive thing with my mom many times with hospice. I hope this doesn’t sound too morbid but early on they would call and I would lose my shit then she would rebound. Now they basically have a 24 hour wait when it happens. I’ve learned a lot about this disease in the last few years, but the best thing to do might be a DNR since her quality of life is going to be so bad, but of course it’s your family’s decision. we just decided that since my mom is where she is, letting her go peacefully is better than poking and prodding to maintain where she is. Again, sorry if this sounds morbid or depressing, but this has made me take a long look at end of life, similar to my fathers cancer.
I won't anonymously, ham-fistedly weigh into the case specifics of such an important and sensitive decision displaying no credentials but my Ratt affinity, but I would make sure that your wife feels well informed about her mom's care directive. Feeding tubes are one thing that's often a big source of confusion near end of life, as families tend to think the patient is going to suffer due to the lack of adequate nutrition/hydration. If she hasn't, very much recommend having a conversation with one of her hospice nurses or providers about it, and having them take time to help complete a POLST (or whatever your state's equivalent is) if she hasn't already so she and you can feel more empowered.
Primary care MD. I've managed a lot of end-of-life care for patients. It feels really absurd to step over into my professional world with my absolutely absurd username/avatar/Ratt fan of, but there are just so many patients caring for their loved ones with Alzheimers around their death who in hindsight wish they had known more than they knew at the time, and few things are more important than for families to experience their loved one's death as free, empowered and present as they can be. Won't ever cross the line of making specific recommendations, but anyone itt, please don't hesitate to PM me if I can at all help you ask the right questions to your care team.
She set up an advance directive before her mom got really bad, I was even looking at it last night. She was talking about the distinction between being a vegetable and on a feeding tube versus still being okay relatively speaking and just needing help getting nutrition. It's more than the doctors think that she should just go ahead and go on hospice because she's been hospitalized with pneumonia so many times and is still unresponsive. There was a concern they may not even have a bed for her because so many people are hospitalized with covid unfortunately. My wife worked several years specifically with case management and stuff like this so she's very well aware of what all is involved, she's practicing therapy since getting her LCSW Currently my MIL on IV fluids and antibiotics and they're going to move her to in patient hospice soon.
So my MIL wound up rebounding in terms of gaining consciousness and having energy after being in IV fluids and antibiotics for 24 hours, I'm guessing she was severely dehydrated and wasn't quite at major organ failure yet. However they did another swallow study in the ER and she cannot swallow anything now. She has some energy and my wife is debating whether she should have surgery to get a feeding tube. She would almost certainly pull a nasal tube out so the other option is for one to be inserted through her abdomen. Her advanced directive is written more as if she's in a coma so it's not completely black and white on her wishes. I'm guessing if she doesn't screw with it, that is she doesn't actively try to mess with the incision, it could extend her life another few months. Given her advanced dementia though there's, at least in my opinion, a good chance that she'll get she's antsy and screws with it. Right now she has enough energy and according to my wife is messing with all the various wires and tubes hooked up to her. The palliative care nurse said that if she does actively mess with the incision then she would be sedated and likely wouldn't have a great quality of life anyways. Anyways one of her mom's best friends said that she wouldn't think my wife's mother would want this, even if she is a candidate for it after being evaluated, since it's going to require anesthesia and will likely result in some pain. My wife basically agrees with this and if decisions to not go that route then after her mother is done receiving IV fluids and antibiotics she'll be discharged to in-patient hospice where she would likely then pass in a week or less as they don't administer IV fluids or antibiotics. My wife's brother on the other hand wants his mom to get the "best care" and is pushing for it, but he's a selfish piece of shit who hasn't done much of anything to travel down here and care for his mom. He basically assaulted my wife when he came to visit their mother around Christmas where he yanked her off his rental car where their mom was at the time and my wife got into a huge fight with him about his behavior the past couple of years (he only suddenly gave a shit about her care when she moved out of their original house two years ago but never could be bothered to travel down to do anything). That's been a huge source of stress throughout all this since he is responsible for the funeral arrangements per her mother's advanced directive and still has some legal right to know what is going on and have his say, but who knows if he'll even bother to quickly come out once she passes. My wife had an appointment to talk to a family lawyer yesterday (which she had to set up weeks in advance) but they didn't handle this sort of thing and recommended a mediator. It's likely she wouldn't be able to meet with one in a timely manner before she has to make life changing decisions. Sorry for just mostly venting, but at least my wife was a lot less stressed since she was able to talk to her mother some. We'll see how things go the next couple of days and if her brother makes this whole process a lot more stressful than it already is.
My mother-in-law is slipping away from this right now. I lost my grandmother and my great aunt (both wonderful people) to this, and I know the stage my mother-in-law is in, and I know what lies ahead. It really sucks.
Want to throw a quick positive in here. My moms hospice nurse called me yesterday and said my mom was more coherent than she has been in a while. Put her on the phone and we talked more that the last few visits. She was far more audible than the last 4-5 months, but she was asked if she was happy I was coming to see her Saturday and she said oh yeah. I told her I loved her and she said of course. I laughed because that is dead on her personality and even if it isn’t what at was, it’s more than we’ve gotten in a while.
Without looking at any data, I assume this is because of increased life expectancy, more awareness/diagnoses, etc. I don’t think the incidence of these kinds of neuro degenerative diseases are actually on the rise. edit: I guess I could have read the article/link before posting…
I live 600 miles from my folks. My dad is fucked up and can’t travel anymore. They used to come down 4-5 times a year to see my family. It’s spring break week so we decided to go up to them. 15 minutes into being there and we get this… Spoiler Parkinson’s and dementia can suck a dick. My mom finally enabled their long term insurance/care plan so things are progressing (both good and bad). It’s so bizarre to see the deterioration. It’s not even sad anymore. It’s just like ‘what the fuck’. Sad is when I FaceTimed him a few weeks ago. I asked how it’s going and he said “Terrible. I don’t want to do this anymore. I can’t do it everyday for much longer.” He’s completely out of it and makes no sense anymore, but even he realizes how awful his quality of life is.
Spent all day babysitting my dad yesterday and physically dragging him (240lbs) around. He fell on his face a few weeks back, knocking out his front teeth, stitches, concussion, etc and hasn’t seemed to recover. He can’t walk safely anymore and has been falling multiple times per day. My mom is calling assisted living places today because shit has progressed fast. I’m leaving on Wednesday and my mom can’t handle him by herself. I don’t know what she’s going to do. I’m happy something is finally going to be done. It’s terrible to watch even for just a few days.
That's horrible, I'm so sorry to hear it. Does he have any home care services set up? PCA? Might be worth a call to the alzheimer's assn care consult line. See what they have to offer
Nothing is currently set up. She has been doing it by herself for the last 5 years. He’s been getting worse, but the fall seems to have really accelerated things. My sister and her family live 2 minutes away so there is some help. It’s just not 24x7 which is what is needed. Luckily they have a pretty robust long term healthcare plan that will cover most/all of it for the next few years. I have no idea how long he lasts at this point though. We have always been told that Parkinson’s/dementia doesn’t kill anyone…the falls, pneumonia, infections, etc do.
Mom's just an idiot at this point. That's indelicate but I say it with no malice and it's not a foreign thought for any of the rest of you. She's got no concept for time - when things are, how long it is until x. What day it is. She's regularly confused about who she's talking to or who is in her presence. Never knows where anything is. We tell her 10 times in the span of 5 minutes which of our carry out packages contains her salad. Constantly says baffling (or best case totally inane) stuff. Actual conversation is impossible. Best I can do is just try to prompt her to reminisce in a way that I might be able to share in. Every activity is too daunting, or fraught with an excess of complication. And it's still, not (yet). that. bad. There's a possibility that there may be a hereditary thing to it in our case, and all I can think is I'm not gonna let myself get to even this phase of it. Fuck that shit.
My dad couldn’t move yesterday and we couldn’t get him out of bed. Had to call the ambulance and he’s in the hospital. Advanced Parkinson’s and dementia, aspirational pneumonia, refractory pain, etc. It’s just a coincidence that I’m here while all of this is going down and I was not ready for it. My mom is wrecked and it is heartbreaking.
I know it is of no solace but try to take some comfort in the fact that the burden on your mother has been lifted. Your dad will get great care in the hospital and while she is heartbroken, she will be able to finally get some rest. It's not easy having to place a loved one in a long term facility but it was an eventuality. His fall was likely the inciting act. Sincerely hope you all adjust to the change as smoothly as possible.
jbr I haven't had time or more the emotional energy to write out what happened with my mother-in-law in the past few months, but it sounds remarkably like what she went through the past year and a half. She had swallowing problems before her Alzheimer's diagnosis and so she deteriorated very quickly. Would definitely recommend getting him in a memory care part of an assisted living facility if possible.
He is being transferred out of the hospital in a few days to a skilled nursing/rehab center for 3 weeks. Then he will be moved to a memory unit at a care center. We’ve visited 3 of them today and have a favorite that will get decided on tomorrow.
My dad was in the hospital for 9 days due to pneumonia at the beginning of the month. Been out for a week in rehab. Headed back to the hospital today one more time before we go the hospice route. Shit just sucks. I’m not ready to be the highest ranking male in the family.
Interesting show on 1A on NPR today re: use of robots in memory care facilities to assist with caregiving and companionship.
any advice on getting dementia patients to swallow pills without chewing them? Mother-in-law has covid and you're absolutely not supposed to chew the pills when you take them.
Yes, sorry, should have been more specific. I'm not there (my wife and both her parents all have covid, I do not). I'm guessing it's because of paxlovid mouth, not because it's specifically dangerous. https://www.theatlantic.com/health/archive/2022/05/pfizer-paxlovid-covid-pill-side-effects/629772/
My dad had to take 100 pills a day for years. We put them in pudding towards the end. Spoonful of pudding, a few pills, and he’d swallow it all.
my Uncle passed away 11 days ago at only 61. He had been battling Alzheimers around 8 years. knew it was heading that direction but still tough to accept. I am convinced the Pandemic sped up the end for him, before COVID visited him at least once a month and while the decline was there he was still eating well. that went south with more isolation and accelerated the last month
Just closed on a new property jointly with my dad. Big, beautiful barn renovated to a home on some gorgeous land on a river. Plenty of room for me, my wife and two small kids in the upper level, while we finish the lower level into a really comfortable, accessible suite for my mom and dad. My mom's approaching the end stages. With us all together, we can more closely enjoy some good times, however much is left. Her biggest joy is having her grandkids around, so this is a big deal for her. And us. We're hoping that with this set up, and some homecare support, later home hospice, we'll be able to keep her with us until she dies. She was an incredible care giver. Her mom lived with my family growing up. She wanted nothing more than to be a close caregiver for my kids, and man that would've been a beautiful thing to behold. Not fair that this disease showed up in her late 50s just in time to rob her of that.
Brutal circumstances, but you are doing right by her. As tough as it is, you will look back and be grateful for this time. We just had the memorial for my dad on Sunday. He passed in his home (a couple months ago) with my sister and I each holding his hand. I hope you are able to have a similar experience.
Man. If it’s any consolation, I got to know my wife’s mom for 5 years. She passed away about 18 months before we got married. I think about how much fun she would have had with my son all the time. Enjoy any time you can.
It's gonna be an excellent aging in place situation for my dad, too, after my mom is gone. Dudelord is an OG husk, grew up on a farm, work ethic like none other. Had to retire early to care for my mom, and he's just not ready to be retired. So now he and my wife get to raise horses on our property. She's an equine mental health therapist, and he's just ready to get his Nebraska hogmolly on. Gonna be really great for his mental health.
my old man regularly uses “shoot/shot their wad” as a descriptor in practically any social situation, including in front of his 9 year old granddaughter, at restaurants, parties and other social gatherings. It’s wild.