I think the main reason she doesn’t like it is it’s not home. Even though she has her own furniture, etc. The other big reasons are she has had trouble making friends (something she has always done fairly easily in the past) - that is probably a combo of being deaf as a post and often confused/rambling as well as just not putting herself out there. She doesn’t do the activities. She doesn’t like going down to meals though if someone takes her she eats heartily. She used to complain they made her put on shoes to go down (!) but I haven’t heard that lately. Her main complaint though is the lack of routine - she doesn’t know when the aides will come - and if she calls it takes a long time for them to come. She complains some mornings they come get her for breakfast, some days they don’t. I think it’s all wrapped up with bring confused, she (probably rightly) thinks with more of a routine she’d be less confused and more able to cope with life. The place is very good but like any AL the aides have a lot of people they are handling and can’t cater to her. Plus she doesn’t know how to ask for what she wants and if I advocate it’s only effective short term. They really liked her at first but I think they find her frustrating - she refuses to shower and tries to wear the same clothes everyday. Which I think they think makes them look bad plus they waste time arguing with her. Mostly she’s pretty docile though and the aides I’ve met are all very nice. I think she magically thinks she’d be better cognitively and maybe even physically at home, and now that she’s accepted she needs help she’d rather have someone is dedicated to her rather than serving 20 other people as well. I sympathize as I am even more independently minded than she is - I would hate living there in a lot of ways nice as it is. It’s really hard to be old and not in control of your own destiny.
This is why I have said I am writing a letter to myself, and giving it to my 3 sons. It will say “Cinnamon, when all three boys give you this letter, you have to listen to them!!”
If I didn’t know better I would swear you were talking about my MIL. It’s very difficult to navigate this situation. MIL is 99, and we finally persuaded SIL, the local sibling, to hire additional help a year ago. MIL thinks it’s a waste of money, but we tell her that it’s to make US feel better. The aide was 3 days a week, 3-4 hours a day, until a month ago. She is now 4 hours a day, 5 days a week, from 3-7. She keeps the room clean (including the bathroom!), takes MIL to the bathroom/changes her if needed (it’s usually needed), helps her with dinner (she typically eats dinner in her room), gets her in her nightgown, helps her brush her teeth, that sort of thing. She’s more engaged on the days she is wakeful.
We also instructed the staff that MIL is to go to the dining room for breakfast and lunch - she’s in a wheelchair, so they have to come get her. We want her in the common area between breakfast & lunch whenever possible, so she typically watches tv with a couple other residents (none of whom can hear the tv I suspect). MIL was at the point where she spent all of her time in her room - the AL staff was not trying to get her out - so we had to put our foot down & demand a change.
The recent changes & the addition of the aide have helped her, even if she won’t admit it.
My mom is like this. She doesn’t want to go sit in a big room full of half awake wheelchair people and listen to music, or make a craft. She doesn’t want to eat in the common dining room with food she doesn’t like and people she barely knows. She (and I) can’t figure out if they really do want her to buzz for help getting up and to the bathroom, or if she’s to attempt that somehow on her own. There’s no onboarding, so to speak, and I see that theres no realistic way for that to happen. Aides don’t have time to cater to one person.
So I help her to the bathroom. I got her in the wheelchair and we went around to see where everything is. She’s shy and scared. She will retain almost none of this. She is confined to her bed most of the day. Local and Preferred are afraid of the wheelchair, not sure why, hoping that will change. Mom never advocates for herself, (there are alternate food choices; she never asks for one) is afraid to ask questions, and worries she’s a bother, 24/7. There’s just a real limit on what you can do. I did cut her nails and bring her an emery board. Aides are uniform in saying that’s one thing they cannot do.
Many years ago, my sweet mom wrote my sister and me a letter saying that when we said it was time, she would move to a nursing home. Her only request was that we visit her regularly. She was such a thoughtful, loving person. (It makes me sad to think that she passed so suddenly, literally weeks before she was due to move into the wonderful facility my dad now resides in.)
My MIL also doesn’t want to be a bother. We keep reminding her that she is not a guest - she is a paying customer. She has a right to ask for help, and she has a right to expect that help will arrive in a reasonable timeframe. The bathroom thing is an issue for her, too (has been an issue at 2 of the 3 AL’s she has lived in) - the lack of adequate help is problematic, and it’s especially problematic when the resident needs assistance to get on/off the toilet. My MIL just wears a disposable brief now & will sit in it all day if no one checks in her. I don’t like it, but it’s not my fight.
Can the head of nursing for your mom’s unit be alerted that staff needs to check and change your mom’s brief, say every 2 hours during daytime, so she doesn’t get diaper rash and/or sores that can be very tough to heal?
That is actually what is supposed to happen. It happened for a few weeks after our family meeting with the head administrator, then it stopped. H does not want to get into it with his S & her H, who are local & in charge of MIL’s care. H & I would not accept this if we were in charge, but we aren’t. He expressed his concerns to his S … her H doesn’t want to complain because residents who complain are asked to leave, and he keeps promising his MIL she won’t have to leave. F’ed up? Yeah. But H can only express his concerns. (His S is the one I wrote about who has some big health issues, and that is still being sorted out. It’s a mess)
Our friends moved their folks to family care home yesterday that parents agreed to. Now they’re raising holy heck and say they want to go “home” and will call the cops! The great grandkids are there with them, visiting are the care home.
I told my friend she needs to reach out to geriatrician to help ease this transition & how long they need to wait before they go & visit so as not to rile up the parents. The sister who lives in CA is scheduled to come next weekend to visit.
Yup, same. Mom has the additional obstacle of her bed only maybe 4" off the floor, so to exit it herself she’d have to use the controls to raise it (not happening) or be able to rise from a very low position to transfer. (Also not happening)
we find the gulf between what is promised and what happens to be fairly wide for some things. I don’t necessarily blame the staff, but it sure is frustrating. The staff of course intends to help her on schedule (it’s in her plan of care, etc) but that’s just not possible most of the time. I can’t even get them to answer email or the phone.
Phew, crises averted at this time. The elders have calmed down. The mom is getting re-acquainted with the staff and woke the dad from his nap to have dinner. They asked for photo albums and slippers to be brought over so they can enjoy them and look them over. The daughter (my friend) called the geriatric clinic at the medical center and they helped her figure out tips to ease the adjustment. She has them as a resource for when there are future issues in the adjustment. There is a puppy in the family care home that resembles the dog the mom used to have, which everyone thinks the mom will like.
If I were just dealing with my (cognitively-impaired) father, it would be a, pardon the pun, no brainer. However, my mother is not suffering from anything more than magical thinking and she is the one with legal authority to make the decisions. I cannot force her to do anything. I am trying my best to disengage enough so that I don’t make myself sick with worry about things over which I have absolutely no control.
Wow, your mom sounds just like my mom. He says he wants to save money and balks at paying for his granddaughter’s lunch, then orders $200 worth of crappy supplements on his phone. We did decide to have Dad speak to the bookkeeper any time he wants to charge anything - I haven’t heard how that’s going.
BIts and pieces of our last few days:
Preferred doing a bunch of driving and arranging (bless my SIL) to assure Mom is properly transported to two appointments. The wheelchair van driver casually mentions that P could always just ride along. Nobody told us.
Dr 1 bugging me about blood tests. RN Super not returning email or calls; realize the contact list I was given (after I asked) is full of errors. RN Assistant returns messages. Dr 2 bloodwork has been sent to Dr 1; Dr 1 is pissy about the wrong work being done; Dr 3 is now queueing up for more sticks. I say perhaps we could get organized here, RN Assistant tells me they will take care of all that and Dr 2 bloodwork is “basically the same” as Dr 1 so I have to point out that no, it is not.
Get texts about 3 new appts we did not make for her. Her AL is scheduling these without our knowledge; I cancel them all and RN Assistant and I have a convo about why and how and who is going to dothis going forward.
two existing appointments are with 2 different doctors but the same office, one hour away and 2 weeks apart. We are unable to get these scheduled for the same day bc the doctors are only there some days, and insurance won’t pay for 2 at the same place/day anyway. I find this out after pushing back on the phone over whether I am HIPAA cleared or not (I am, they figured it out)
Pain Management appointment is hilarious; this Dr is leaving practice (as did the previous one) and I am badgered by Epic to make a new appointment,except there are no providers within 50 miles. PM Dr’s suggestion is to have the AL staff keep an hourly record of Mom’s pain level!! As if!!
Her cast is off. Even Preferred thinks her dementia is worsening. Thank goodness we are all on the same page of : if the doctor cannot provide some demonstrable relief or stabilization, why drag her around?
We have about 10 more days until a decision is made about whether or not she returns to personal care or has to stay in nursing care. I cannot imagine her doing well in the chaos that is nursing, and feel so sad for her. What a terrible and uncomfortable way to end up at 92, when you did all the “right” things. I’ve started thinking things like it would be better if she just passed away in her sleep. sigh.
What a lot of things to try to manage. Her AL facility sounds suboptimal. Do you think Preferred might get on board with her moving to a location closer to you?
For my siblings, moving her is a non-starter. Some reasons I agree with, others not so much, but in any event it is not going to be considered. (And after a walk and mowing my entire lawn, I feel a bit less rant-y)
My husband is going to his mom’s house tomorrow, this is one of those times that I’m glad I have plans here and won’t be making the trip.
Yesterday local called to let my H know what is going on. For 30 years, local has lived 4 blocks from his parents. He went through a late in live divorce, decided the best course was to purchase a roomy house so his kids had a home base, in the neighborhood they grew up in.
Over time, the kids don’t visit often, local has found a new love. Decided that he is going to sell his home and move in with his girlfriend. She lives maybe 20 miles away, in the same area but not 4 blocks away.
I guess this news didn’t go over well. Local told H that god forbid you suggest any advice to mom, but she certainly loves to tell you what to do.
Mom says she is looking at assisted living, her neighbor is going to help her look at places. Local told H not to do anything stupid like tell her that it might be a good idea to look at moving!
Should be a day for H!
My aunt in Switzerland is 87 and is now on palliative care after pneumonia, stabilized in ICU, and medically they can do nothing more to help her. She is very dear - has a long marriage with a dear man who will be so lost w/o her. Their home is multilevel and their son/family live on the third floor, so Uncle Leo will continue to be well looked after. Their four children/grandchildren/spouses are keeping vigil, so someone is always with her/dad. My aunt is the last remaining sibling of my dad who died young in 1995. My dad was very close to all his sisters, especially this one who was younger by 8 years. My dad always stood up for her best interests on big and small things.
CBS Sunday Morning did a segment recently on rural areas which have bigger growth with aging residents - at least 20% growth of people over age 65 since 2010. Individuals being lonely and socially isolated. Can possibly find the segment via FB (where I saw it) or elsewhere.
Many don’t move to bigger cities due to cost disparities, and “There’s no place like home.”
Land areas are considered ‘frontier’ if there are 6 or fewer people in an area per square mile.
There are areas where there are community groups - one program “Aging in Community” which benefited from a Foundation - and is expanding to 12 counties in ND. Mostly farming communities - and I imagine many extended relatives look out for these individuals who can still live at home.
QOL, being connected, feeling confident.
A friend’s mom lived in her home outside of town in medium-sized MN community and died in her early 90’s - stayed pretty physically and mentally strong until quick decline and death. Friend had a local sibling that helped navigate things and communicate to other siblings.
Families can get so fractured. I am one of five siblings, and the younger two have problems which has really divided us. DH has three brothers that all get along, and he cannot fathom how sad it is on how badly younger two siblings of mine have gone.
My FIL did call the cops about my DH stealing his car!
We are on our 2nd visit to Dad/wife, 8th night at Homewood Suites. Each time we stay I tell my husband - “these are set up really well to be indepedent or assisted living centers someday”. Ha, so that’s my prediction… someday converted Homewood Suites. And truly I do look around and think it could work for us someday, once downsized and junk gone. But that’s a different discussion - Bag a Week 
Stayed an extra night (kudos to hubby, who agreed to do so even though it meant 1 less freebie night with friends on jersey shore). But such a good day! Got some paperwork sorted. And ta daaa - interview with a home aid my sister met at the hospital last winter. She seems great, and we arranged a “trial week”, with a 2 hour morning and a 2 hour evening another day. The aid wants more hours, but this trial allows demonstration of value. (I had to keep rolling my eyes every time dad’s wife said “ideally I’d want one hour in the morning to get him dressed and the come back another hour in the evening to put him to bed”. That unicorn could only happen in the rarest of instances, if a candidate lived on same block. We’d pick a morning to schedule when aid available 2 hours… and she’d say “and then maybe another hour that night?”)