The ED visit thing is a tough one, my FIL insisted on a couple of ED visits during a week when all kids were on vacation. Why did he go? Because he was not walking as well as he should, of course the whole ED experience is exhausting and also quite tiring is me on the phone whilst at Yellowstone, trying to arrange a wheelchair accessible transport home other than the ambulance. If you let the ambulance take them home after not being admitted, then Medicare won’t pay and they were charging $1500 
POLST is an excellent idea!
The personal care home where my parents are know that they should not go to the ER. They have both fallen several times and they just let me know. I wrote a letter saying I am aware of falls and don’t want them to go to the ER.
I also filled a MOST which is my state’s version of the POLST which says no ER. The default is to keep them there. Only to the ER with my permission.
Thank you all for the info. My mom was so heavily sedated from the ER that she was still asleep and barely responsive nearly 8 hours later. All the tests were negative so we got her back to the facility with a private duty caregiver but this just isn’t good for her. I have a conference call with the DON so I will ask about MOST or POLST.
Can someone please tell me what the acronyms of MOST and POLST stand for?
POLST = Physician Orders for Life Sustaining Treatment. Not sure about MOST but something similar.
Medical Orders for Stopping Treatment? Our state has POLST, so just guessing.
States have different acronyms for the form; some states use MOLST for Medical Orders for Life Sustaining Treatment. Reviewed this form with my father’s Dr., item by item, and it was in the front of his chart at the skilled nursing home. Very helpful process; concise template for considering “what time it is” and what is appropriate.
Could see going over the form with Dr or DoN as a way to help family members begin to sort out variables that can be challenging or divisive. Asking specific questions about different interventions was very helpful: what is the likely outcome for my relative if x were done? Some procedures are unlikely to be effective for some patients and can be painful.
I could use some advice from the collective hive here…FIL, age 84, just got out of three months in the hospital and
rehab. He had a major fall coming out of the orthopedist’s office and broke C1 and C2 vertebrae – somehow he managed not to incur any neuro damage. He had fusion surgery after the breaks didn’t heal, so range of motion is now limited. He also is having a hard time getting around with a cane/walker because of arthritis and carpal tunnel in his hands (he also had significant gout in one hand while he was hospitalized).
The arthritis in his hands is severe (he was an electrician) to the point where he now needs adaptive utensils to eat (and an aide to come prepare and serve food twice a day). His main form of entertainment and engagement has been to go online – mainly looking at articles and videos vs. actually writing messages. He now is unable to manage that with his hands. Does anyone know about large-key keyboards or other adaptive devices (or voice-activated if it’s SIMPLE) that might be helpful? We thought about an Alexa-type device, but he is also very hard of hearing and prefers to see a screen/visuals. We are concerned about his mental well-being if he is now cut off from the things that engage his brain.
Dear BIL lives 1.5 blocks away and takes care of pretty much everything, though since I left my job this spring I am now going up to give him respite periodically. BIL needs it – his wife’s dad is 85, has dementia and lives with BIL and SIL – that is a bad situation, as her dad has gotten mean and nasty (and is healthy as a horse).
Meanwhile, my dad (age 81) just got out of the hospital and should be out of rehab by the weekend after a bout of salmonella and pneumonia. He has also passed out twice this summer, but nothing showed up on results by CT, MRI, bloodwork, etc. Will be going down there in early October to give my sister some respite (and clean up the house) while DH is overseas for work.
Glad I have been following this thread for several years – I have learned so much from all of you. While I’m not the point person for our dads, I’m much more aware of the need to support the sibs who are the laboring oar keeping the ship afloat. If there are things I can do remotely that can make their lives easier, I’m all over it. Hope that this can keep the relationships together when the seas get stormy.
Wow CountingDown that’s a lot going on. I found this keyboard online, but I would ask the OT at the rehab place, I am sure they deal with this all the time. https://www.infogrip.com/products/keyboards/large-print-key-keyboard/big-blu-visionboard-with-bluetooth.html
There are also eye-gaze command mouse devices, if that would work.
There are larger keyboards, but then the distance he moves his hand is greater. There are pointer-like things he wan wear on each hand that stabilize the wrist and fingers a bit. And there is software or a device that can speak what’s written on the screen. But all these may be more hindrance to an older person.
There are also devices that track eye movements that correspond to the screen and keyboards. No idea of the costs though.
I watched a live q&a with Teepa Snow online tonight. She is an amazing wealth of knowledge for anyone dealing with a parent or relative with dementia. She’s probably been mentioned before in this thread but she’s worth mentioning again. When I feel like I’m going crazy taking care of my mom, I find Teepa and watch her - and rededicate myself to having patience and putting myself in my mom’s world to interact with her better.
I’m bringing my mom home from the mental health unit today. It’s been 4 weeks. Praying for a smooth transition back to home and with Dad. Cleared the house of all the notes she had written and other reminders of her bad summer at home. My sister and I will stay for supper and hopefully she has a great night. I think she will be good about her medications. She feels physically weaker so we’ll need to work on that but it seems the anxiety and hallucinations and prickly feelings are gone.
I’m struggling with something that sounds rather lousy to say out loud, but it seems like this thread might be a good place to share it. I noticed the same thing with the in laws. I am 24/7 thinking about, and dealing with, a working on things for my Mother. Tiny little things, great big things, no one thing is any big deal, but the unceasing nature of it all makes me feel full up on parent related stuff.
When I have spent the day dealing with this stuff I am emotionally done in terms of “her” so I find I don’t want to do the thing she would most appreciate- sitting down and having a conversation, sitting down and watching TV with her. I’m so busy doing all the “important” things that I don’t have a warm fuzzy desire to just sit and visit. When I try to do that, if I am honest with myself, I have to admit, I really have to force the conversation- she is not a good conversationalist and having lived with us for nearly a decade, I am protective of my life stories as I am ever so weary of hearing her tell others all about my life, get the details wrong, and just generally overshare MY stuff, so I find it really difficult to relax from the caregiver/caretaker role and have anything to just chit chat about.
I want to be a better person than that, and I have certainly noticed that as I recovered from the hell 18 months of dealing with the in laws failing and later dying and all the stuff we had to do, yah, now I am much more patient and kind, much less annoyed by the ‘stupid’ stuff she does. But I’m not yet to the point where I want to sit down to a cup of tea and long chat.
I am utilizing the tactic I used with my teens when they were not chatty, car rides. For some reason being in a car takes the pressure off, you can talk or not, be silent a while, etc., and it just eases the whole interaction.
But I am still disappointed in myself that I plain old don’t want to sit and talk with my own mother about life. It’s also hard because I could only do that on a good day, on bad days she is confused. All the things I deal with on bad days, the falls, the stitches, the rearranging the whole house, the hiring shower aides, the obtaining new stuff for her current stats (shower chair, bed that moves up & down, etc.); all that I am doing, when she feels good, she has no recollection of the bad times. Even showing her the photo of the 3" cut on her head from a fall incites no emotion and little response. So on a good day, she just feels like her old self with no recall of all the bad (and isn’t that truly a blessing for her) whereas, I can be overwhelmed with all the stuff I’ve been doing. It reminds me of my friend who’s son was on drugs for about 5 years, once he got over that bad time, life has been ok. But she is still a bit shell shocked by it all and he has very little recollection and views it as in the past, something to be discarded, but she will never quite forget.
Not really asking any question, just putting this out there.
@somemom, I don’t think you should feel disappointed with yourself. Your thoughts and feelings seem entirely normal to me. My ex-husband has been his parents’ caregiver for several years, and he said he hates listening to his dad talk and has no interest in conversing with him. He hears the same old (emphasis on “old”) stories from his dad all the time, and his dad isn’t interested in listening to my ex plus can barely hear him, because of hearing problems and because my ex mumbles. Anyway, I know that you’re not alone in your feelings.
@somemom - Seems normal to me too. Caregiver burn out is real and you need down time for yourself. Be gentle with yourself. You are doing a lot!
You are not alone in your feelings. My mother’s dementia is advanced at this point, and she doesn’t hear well, so we no longer have conversations, but even before she got this bad, I didn’t really feel like having conversations with her. My time and energy for her was spent doing the “important” things, as you said, and I was spent by the time I sat down with her. I always had to be careful what I told my mother about my personal life because she’d turn around and make it all about her, so I was used to not necessarily having good conversations with her, but I sometimes wish I’d have had more patience with her.
Ah, yes, the hearing loss, even when you do find some inconsequential thing to say, darned if it sounds sillier and silier on each subsequently louder repeat 
I struggle with what to talk about with my Dad. He is at the point where he really can’t carry on a conversation. When I visit I either bring candy or the dog just to give us something to talk about. I dread going to visit, but then feel tremendously guilty when I don’t visit.
@somemom I also think you are entirely normal in the way you are feeling. I immediately thought that before I read beyond your first line and saw all the many things you are doing for your mom!
I am not dealing with half of that (folks are in ALF) but I find that I spend so much time dealing with small things: laundry, paperwork, doctor calls, paying bills, arranging blood tests, etc that I have much less time to actually just go and visit with them. To them, it probably feels like I don’t spend much time with them. To me, it feels like I spend 2-3 days on them, but very little of that is positive, social interaction. It’s a shame.
I assume your family has decided that your mom living with you is the best situation, either due to finances or care or values etc. But I do not think I could do that. It is emotionally too draining for me to be around my mom for a whole day. Please give yourself a break - literally and in your head.