@runnersmom You are a blessing to your mom and to your sister.
@runnersmom - it’s so difficult to witness the decline, but must be additionally so to know your mom recognizes her decline, too. She continues to show her strength by relinquishing control on important matters. My mom fought us every step of the way and many days still believes she takes care of herself. Have a wonderful visit with your mom and enjoy giving her the gift of outings and time together. She sure sounds like a remarkable woman.
“As they were admitting him and the nurse was accusing my mother of killing him by refusing treatment he quietly passed away - I saw it as him taking his exit…stage right.”
@runnersmom I am so with you on the idea that at some point it is time to let go. Your mom’s actions sounds heroic to me. We had a nurse like that in hospice with my mom…she was obviously very uncomfortable with palliative care and made little accusatory comments, etc. etc. Why would someone give their opinion in the midst of a clearly horrendous situation for the family, when they haven’t been asked? I didn’t get around to complaining immediately but she disappeared within the week, to my relief.
Good luck with the shingles…that can be quite an ordeal…there are some threads elsewhere on this site about it if you haven’t already found them.
My dad was a respected scientist and tenured college professor who did work related to the immune system in the later part of his career. Much of his research was based on fundamental principles of evolution. He has been slowly sinking into dementia for 5-10 years (hard to pinpoint exactly when it started, but in retrospect, quite a while ago). He now gets these endless “health newsletters” in the mail…most are veiled advertisements for expensive dietary supplements, the kind that are not regulated and have no clinical evidence of effectiveness. When I moved him into an independent living apartment 4 years ago, I discovered crates of the things. He would also get solicitation calls asking him to buy series of “reference books” costing several hundred dollars, and he would dutifully hand out his credit card number. When they arrived he had no memory of ordering them, but he felt good about getting these somewhat official looking books in the mail and would leave them out on his coffee table. As a result of reading this garbage, which he seems to believe is prepared specifically for him, he now to my horror buys into a lot of this anti science crap. It pretty much goes against his life’s work, and I don’t want to go into a lot of specific examples, but it is pretty clearly the dementia that is in charge nowadays, not the scientist.
Anyway the relevance to this thread is I think it is at times humiliating to him that he can no longer make decisions about his care or even day-to-day activities. So he occasionally (not often, thankfully) puts up a fight or refuses to comply with this or that medical recommendation, and backs it up with these newly formed “beliefs.” I do want him to feel like he has some autonomy but it’s a tough situation.
I find it reprehensible that provider’s are causing loved ones of harming patients by not aggressively treating folks that are pretty demented and suffering. I fail to see how they have any right to substitute their values and feelings for those if loved ones who have suffered with the ailing patient.
I give credit for all those who can continue to do what they know is best for their loved one in the face of criticism that is only destructive and cruel.
I’m so grateful that my mother has a detailed living will and made her wishes known early. Made it much easier to make her a DNR and have conversations around end of live care with the facility. It helps me to know that I’m advocating for what she would want for herself.
When my dad was dying, I made a point of not telling anyone outside the family that we had to decide whether he would have a feeding tube inserted. It was around the same time as the Terri Schiavo case in Florida, and I was concerned that someone who opposed our decision regarding the feeding tube would complain to the hospital (or the district attorney or the state) and that our dad would not be allowed to die in the manner he wished.
@runnersmom it is so hard to witness one’s parent declining. You are exactly right when you say you miss the “old mom.”
It is hard to let them live on their own terms, especially if it means they may be shortening their lives. My MIL did not want help and insisted on living in her 2 story Colonial. We were so scared that one day we’d come over and she would be lying at the bottom of the stairs, but short of physically picking her up and moving her, there wasn’t a whole lot we could do.
Just spent a day in the ER with dad because his blood sugar was high at breakfast and lunch, I knew it was his brittleness but I understand the CYA approach that the ALF has. Did all the bloodwork and X-rays, no infection, all looks good. Just cost me another day off work and another set of ER bills.
Had a care conference and it is not clear what situation will ultimately be with 2 parents with cognitive problems. I am hoping OT can get mom up to doing her ADLs and they will just need cueing for meals and events, If they need more than that, it’s private duty staff which is too expensive to maintain or possibly moving someplace else. Which I cannot imagine.
Busy looking for a therapist to help me navigate the waters of dealing with this on my own and belong me realize when it is okay to look out for my own health. It could consume me totally, attending to all the crises and needs of my parents.
Thank you @runnersmom. Your mom is lucky to have a family that is so attentive to her needs. I’m shocked about the nurse’s comment. It strengthens my resolve to not bring my parent’s to the hospital at the end of life unless it is for pain control.
Good for you @momofsenior1 for having those conversations with your parent’s early on. I am so glad I know my parent’s wishes.
I also need a therapist @surfcity as an only child. But the energy to find someone seems too much
surfcity, I cannot believe they sent him to the ER for a high blood sugar, unless it was 400 or something. I know the AL staff cannot make insulin decisions (even RN’s can’t) so can they call you and put you on the phone so you can manage the high?
Actually @compmom he was 500+ at breakfast and at lunch so that is what triggered the call to his endocrinologist. And I know that is high. But a week ago they called the ambulance because he was 40. I think the highs could have been because he hoards crackers and snacks in his walker bag and maybe was eating some just prior to testing and no one saw that? Or he was so stressed out from mom being in rehab that his blood sugars got really labile? I guess we will never know.
I don’t envy you. Like I said, when my daughter was in the hospital I had to spend 24/7. I hope she has someone to take care of her when I am gone. It is so easy to get up to 500 and so dangerous, and 40 is even worse. I really feel for you.
My mother is 88 and lives on her own in an apartment. She broke her wrist over a year ago. She’s recovering nicely but has gotten less active, more timid about walking outside. It’s turning into a spiral where she feels unsteady so exercises less so feels unsteady. At her last appointment, her provider ordered VNA home visits to help her address this. As I understand it, it’s not just a question of strength but balance involved? At any rate, better minds than mine (and without baggage!) will be hopefully helping her address this.
The nurse called me yesterday to start setting things up. She says it’s covered by Medicare. Mother’s provider said the fact that my mother doesn’t drive, i.e. can’t get herself to an appointment conveniently and independently, factors into that. Since my mother hates going anywhere, this could be a goddess-send. Family history tells me she’s got years and years left, and I’d like for her to be as well and strong as possible in that time. It’s been troubling seeing her subtly getting resigned to feeling weaker, and I’m so relieved she’s willing to try working on it.
First impressions count, and the first impression the rehab center got of my mom wasn’t great. She was weak, sick, confused, and often unwilling to participate fully in rehab, especially if they had to wake her from a nap. Because she was severely anemic and had been in the hospital for 2 weeks with very little activity!!! She’s stronger now, anemia treated, eating better, and better able to participate. So they are of course ready to give up on her, say there is no more improvement to be made, and send her to the Skilled Nursing part of the CCRC instead of trying to get her strong enough for AL, let alone a goal of getting back to IL. And if they keep trying and charging for PT/OT after they’ve given up on improvement that would be Medicare Fraud, we’re not advocating that, are we???AAARRRGGGHHHH.
Thanks for letting me post that.
Realistically, I don’t know what is possible. She’s 93 and has some health issues, for sure. But by all objective measures she is stronger, healthier, better able to participate in rehab, and more willing to participate in rehab than she was 3 weeks ago. Two things saved her in her care team conference yesterday - my sister the retired executive having been there most of the week meeting people and watching the process, and the nurse from the IL part of the CCRC that knows her and knows her determination. But it was close.
Fingers crossed. She may be down but she’s not out yet.
It’s always something, isn’t it? After my mom had knee-replacement surgery in September, she almost immediately decided she wasn’t comfortable doing rehab at home. There is a wonderful CCRC near her home, and there was a bed available in their rehab area, so she arranged to go there. Because her hospital readmission lasted only two nights (intentionally on the hospital’s part, of course), Medicare wouldn’t pay for the rehab. M has secondary insurance. That company initially said it would pay “up to 100% of covered costs for two weeks.” When the CCRC social worker tried to get more detail, the company responded that my mom was in “too good condition” and so it didn’t think in-facility rehab was warranted and it planned to pay nothing. The social worker went to bat on my mom’s behalf, and the insurer ended up agreeing to pay for a two weeks’ stay.
In my experience, beware, when the elders are frail and need rehab, the Medicare Advantage plans try to manage the care. And, of course they manage their care to their financial benefit and one needs to fight hard to keep your elder in rehab. They will push them out as soon as possible, either home, or the nursing home. We had a time with the in-laws.
@GTalum I wish we knew this at the time. Again, we were clueless at that point. We’re getting wise as we get knocked around. My mom got bounced out of rehab way before she should have been. She was frail and didn’t participate as much as they wanted her too. She did sometimes though. I still wish we had more time there. She was happy there and getting lots of attention. We were so surprised when they told us she had to leave. It’s been downhill since then.
My mom (while in rehab) had to be recertified every 3 days under her medicare advantage plan. It was stressful to keep pleading with her to try and make progress. I couldn’t really say “or else they’ll send you home” since that was what she wanted, without any regard for how difficult it would be for me to physically take care of her! When they did decide to send her home I fought it and she was given 3 more days. But the second appeal went nowhere and it was really hard taking care of her when she returned home, many levels worse than she had been previously. I was told that Medicare certifies once a week, and is generally easier to get approved (this was in IL and YMMV).
@GTalum , @ams5796 and @psychmomma Progress. Progress is in the eye of the family I think. I had a similar situation where my loved one got pushed out of rehab way too quickly and they kept telling me this is her “new baseline” or “new normal” even though I knew she could get better with more help. I fought and got three more days as well but then home. I was told they only take people where there are kids or a set up AL otherwise they will make them go to another (down level) rehab with less intensity and services and so the spiral goes downward because there are also fewer expectations, services and help. So frustrating for all involved
"If the insurance covers it . . " is one of the phrases that makes my blood boil.
I have a friend who is a geriatric doctor and he is always telling me that modern medicine can cure or fix a lot of things but that isn’t always in the best interest of the patient. He has families who always want to know “what more can we do for (90 year old) mom?” and he’d love to say, I can do X, Y, and Z but do you really want to do that when it may just make her lie in a bed for 12 months instead of 6 months?