Is there a patient portal you could access? Ask a care manager for update? I’m so sorry, that would drive me crazy.
Could Local get an update from AL and text to you? Nurse take a pic of her or her chart or dr’s orders, plan of care, to share with you?
Your poor SIL, how scary! So sorry that your family is having to deal with so much at once.
I did not realize until recently, that there are senior living consultants who are like realtors for senior living facilities. Is your church friend one of those? I wish I’d figured it out before I got too far down the road. I love that they are paid by the communities and would have appreciated having an advocate during the process. I spoke to one I really like in my town, where my mom wouldn’t move, and she mentioned that she would negotiate for us, and told me to be sure to ask about any incentives. She had definite opinions about different places depending on the elder’s specific needs, that kind of insight is hard to get from a dog and pony show tour. Good luck!
Our church friend works for a lawyer who is legal guardian for elderly people. He is hired by families who live out of state and by the courts. Friend visits the people in guardianship wherever they are living - AL, CCRC, nursing homes, private care homes. She has been doing it for more than 20 years (maybe 30 now), so she has been to a lot of facilities. She has firsthand insight into the good and bad.
There is no patient portal for the AL, only her doctors (and only some of them)
Local never asks questions. He gives us a text if he visits, typically one or two sentences. I am not on her HIPAA contact list (for this unit) and she isn’t capable of adding me; as POA Local could do that but I’m certain that would not occur to him. The staff gave me info as a courtesy when I was physically present. (Small town, no log of conversations to explain)
I tried calling and after many rings, one of the residents picked up and starting rambling into the phone. I eventually hung up. I need to get over it, I do. Deep breaths (but only inside! Holy smokes indeed)
The lawyer who drew up our wills/poa/etc does this. He also serves as the judge for elder care cases, as our area doesn’t have a dedicated judge and the system is overwhelmed. He said that he has learned a lot by being a legal guardian. Made us feel better about him drawing up our papers.
Local may not think of adding you, but can you ask?
One of the most irritating/hurtful things that happened during my mom’s care is when she was transferred to a rehab place. I had just spent 72 hours straight with her in the hospital, iced in. Finally got her discharged and into a rehab place, where my sister met us after doing the paper work. The next day, the social worker came by and asked who I was. I said her dd, and she clarified XYZ, my sister’s name? And I said no, YDS. She said she only had two chldren listed, XYZ and our brother. Now, I know that I am not local, but after what I had just been through to be told my sister didn’t even include me a a child on mom’s paper work? I was so pissed!
Now, my sister is a %$&*. But I’m willing to give your brother the benefit of the doubt and say maybe he hasn’t thought to list you on HIPAA because you aren’t geographically as close.
I wish we could have a resource person like your friend to help navigate senior living options. I think (I know) mom needs to sell her 4 BR/ 2 1/2 BA house and move into a much smaller senior apartment. I know she won’t like it, and I definitely know one of siblings will do everything possible for that to not happen. Like @greenbutton some sibings are real PIA and say how much they do (NOT! even local and closer in distance than me) or will do but can’t commit to any scheduling (all hollow promises) but hate that others actually do the work and have the situation in control.
Having mom here with me and H has been good overall but this can’t be a permanent solution. I do see that her balance is not great and retaining new info is hard. She was driving and going to church and senior center activities right up to the night she had her flare up.
Her spinal stenosis issue in the lower region (had it for decades and surgery about 15 years ago) caused her greater pain and loss of mobility about two weeks ago for one night. I got a call in the morning that she couldn’t move. I brought her to my house to figure out her condition and communicate with doctors. Luckily her doctors have been prompted in seeing her to assess her needs. We are doing the conservative route of epidural injection and PT to see if her condition improves. If not, then more serious conversation if she’s a candidate for surgery. For 86 years old? I have my doubts, but I am not an expert.
I know all of you are also doing so much in caring for elders too. Navigating the care part where they are safe and getting the health care they need is so challenging!
Ask around and do some googling to find a Senior Placement Agency to help you!
I started it. The buy-in cost for CCRC is very high and I know mom and local sibling will balk. Senior apartments that have good reputations without buy-in cost will be $4500 minimum. Some of these places are not in mom’s familiar suburbs. Again, mom and local sibling will balk. Selling the house is a must. Mom and local sibling will balk. Trying to do what’s best for mom is an uphill battle mainly because of local sibling. Just imagine trying to work with a person who has a very mercurial personality like the “famous” person whose name rhymes with dump.
That does sound problematic. I was lucky that my sibling came on to the same page. We finally had (success?) after a telehealth w her Dr where we discussed safety concerns amongst others, and call with financial advisor, assuring that it was affordable, and materially a wash with maintaining the house after considering hoa, taxes, maintenance, lost investment income, etc.
We spent last weekend visiting H’s elderly aunt who never married and never had children. She is of very sound mind and body but her house is falling apart around her, her small mining town is decaying, and she will very likely lose her license next month because she needs to do a driving/written/eye test which she doesn’t think she’ll pass. (And yes, we’ve all told her that if she doesn’t think she’ll pass, she shouldn’t be driving right now!)
We are trying to get her to agree to move to a CCRC community near where there is still some family but in an area that she’s visited frequently her entire life. She said ‘yes’ but we are super worried she was just saying that so we’d leave her alone.
H has offered to fly back in 2 weeks and take her to tour the top three contenders. They are all gorgeous and places I would enjoy living in myself and an enormous upgrade to her current home.
Aunt wants to get estimates to fix her house. I’m not exaggerating when I say it would take a full gut reno. There are two active plumbing leaks, the wiring is old knob and tube, there are big foundational cracks that are starting, the ceiling is bowing in one bedroom and one of the outside walls is also bowing. And the house is worth next to nothing anyway. The big thing though is that she wouldn’t be able to stay in the house during the renovations so this really is the time to move. And even if she moved temporarily, everything would need to be cleared out of the house (see next paragraph), and she’s still left with the problem of not driving in a town where even the laundromat, church, bank and the pharmacy have closed. Other than one diner, there is nothing left. And all her friends have either died or moved.
The biggest problem though is that she is a hoarder and doesn’t want to get rid of ANYTHING. We told her she can choose to bring whatever she wants and that we’ll rent a storage unit for the rest so she doesn’t need to throw anything away. We hope that will be agreeable to her but I think it’s going to be a super painful process to get her out of the house.
H’s hope is that we can get her moved to one of the CCRC’s this Fall and that once she’s out of the house, he’ll take care of getting everything to storage otherwise she’ll want to go through every bag, every box, every envelope and it will take years! We managed to throw away 16 huge trash bags full of stuff, mostly paper trash, and that took 72 hours and we didn’t come close to making even a small dent.
We have a pow wow today with SIL who was with us to figure out our next steps. H has been playing phone tag with the plumber for a week and his office told us to call him tomorrow morning at 7 am our time. Hopefully he gets him. Basically we just want him to tell aunt the true scope of the work and to be clear with her that she can’t live in the house with the water turned off.
It feels harder because this isn’t their mom but they feel responsible for her.
I think if she refuses to move, the next step may be calling adult protective services. The house is that bad that I think they’d remove her.
The whole thing is so sad because she has plenty of money and cold have been living in much better circumstances. She just doesn’t want to spend it. But now is the time!
I feel very badly for H and SIL but I will admit that not being as emotionally involved is helpful for my psyche. Hopefully they’ll have some time before they need to worry about their dad but he’s slowing down now too. Thankfully he and his wife are already talking about moving to a CCRC and have already looked at places. Hopefully they can make that happen sooner rather than later.
For what it’s worth, after trying many nonsurgical options for spinal stenosis, my dad had his surgery at age 89 and recovered well, with no more pain. Hoping for the best for your mom.
If you are serious that she is a pathological hoarder, the only way to get her out of the house is to have her township, fire department, or social services declare the house unsafe and/or condemn it. That obviously reduces the value to the land or lot; the house will be considered a knock down.
Elder services have to have permission to enter and evaluate and she will find reasons to not give that. The township and fire department do not typically need that and can sometimes pronounce it unliveable without any cooperation on her part.
Hoarding is a mental illness that you can’t reason with. (as many here may remember, my DiL’s mom was a hoarder). If rooms are impassable, trash present, escape routes blocked and broken utilities unfixed (because she’d need someone to enter the home and hoarders are resistant to that), then you have a sick person who needs intervention. But if she has lots of stuff and that’s the only problem, it’s harder to get help. PAthological hoarding is staged, like cancer, so there are degrees and it always gets worse. (We took 3 uHauls and 8 full size dumpsters of stuff from DiLs childhood home)
You might have more success with visiting one site yourself, and another with her, framing it as a “we are going to come and do this” and less “would you like to”. The fewer decisions to make, the less resistance.
It’s not quite that bad but close, and getting closer. She does not typically let people into the house. Since there is an active leak, she had no choice but to call the plumber and let him in.
There is one pathway through the first floor and up the stairs (which we helped clear when we were there).
Good to know about calling the fire department/township. Thank you!
The fire department is a good start if needed. They will mark the house if they think it’s unsafe for firefighters meaning if the house ever catches fire they will not go in to fight it (will still fight it from the street but only to keep it from spreading). They likely will need to involve the heath department to order it condemned/vacated. As stated above elder services has no power - they can offer help but if the resident refuses they can’t and won’t force anything. But hopefully it won’t come to that. Even if you frame the initial move as temporary and get her a storage unit and then later tell her the house is unrepairable or will take a year to be repaired or whatever it takes to get her out of there. And if it’s a temporary move she doesn’t need to go through everything hopefully- just decide what to have with her temporarily and the rest will be waiting for her when she comes back (which obviously she can’t but for believing that for now might be helpful). We had an unmarried aunt in my family that fell to my dad and his brother - she lived to be 98 and her money just barely outlasted her (literally a couple thousand left) she is lucky to have you. I don’t know what happens to single people without children or other family.
I think this is my first time posting in this thread, but I have an unfortunate situation and could use some advice. My mother is 100 years old with only mild cognitive impairment. She lives in AL and is doing okay. Frail, recurrent UTIs, but no serious health problems. My sister, unfortunately, has late stage cancer. We have kept this information from our mother, and my sister managed to keep enough hair when undergoing chemo that my mother never suspected. The question is if my sister passes away, do I inform my mother or just keep covering for her absence? I don’t want her to think my sister “abandoned” her but she would be devastated forever.
I’m so very very sorry!
FWIW, I would be honest with your mom. I think I would feel differently if she had Alzheimer’s or full on dementia.
Depending on her belief system, maybe it will even make her aging easier knowing your sister is waiting for her on the other side.
I agree that if her cognitive impairment remains mild you might need to tell her. But you might have more time than you think to cross that bridge. Perhaps by the time your sister passes, your mom’s decline will be such that it’s a secret that’s easier to keep. Sad thing to consider, but it’s true.
We kept my sister’s divorce from our dad for three years before he died (her wishes). Kind of sad it was so easy considering they lived five minutes apart, huh? But that speaks to what a loser the ex-husband was!
My 81-year-old mother who was in excellent health recently went through a serious illness that ultimately resulted in her death last week after a complicated eight-week post operative course. (I posted about this above) In the middle of her post-op complications a dear family member of hers came to visit her to up her courage try to keep her motivated etc. He spent a couple of hours with her, then went out for a bite to eat, and died of a heart arrhythmia in front of the hospital.
We really debated whether to tell my mother; he lived far away, she was a little confused and could have believed he had said goodbye and went home. But in the end other close family members (my siblings, her sibling, my dad etc) just didn’t think we could look my mom in the eye and lie to her. So our first approach was to wait until she asked what happened and then tell her, but after about 24 hours, a couple of other family members couldn’t stand it and felt they had to tell her, she had the right to know etc. So we arranged for another close family member to tell my mom. I don’t know if we did the right thing, since she died one month later, she could have died not knowing this. But of course we didn’t know this at the time. In short, these are tough situations and I think for me, I thought it was the right thing in the end because my mom had a lot of family visiting, a lot of friends, someone might have said something “sorry for your loss” and she would have been even more stunned. And hurt we lied to her. But I can see if the person has few visitors, maybe not many friends left alive to visit (a real problem when my grandmother reached her late 90s), then it might make sense to keep this information from her. And you can assess her condition at the time your sister passes.
So sorry for the loss of your mother. I remember your posts and how sudden it was.