I mentioned the MMSE not so much for some fixed diagnosis or treatment, but for some way to get a little snapshot, some awareness. And then you watch, since ordinary family patterns can mean missing some signs. We expect to take an elder’s arm and guide them to the car- and may not realize how disoriented they really are. Or what other mental agility they’ve lost.
So, HImom, my first reaction to their doc not wanting to assess them was frustration for you. There you are, trying to observe and decide- not just if they’re up to a trip, but what they need from you.
Dealing with dementia is enough to make anyone crazy.
I come to check on my mom about every 4 to 6 weeks and I have never come when I don’t find something wrong that no one noticed. This time she has a sore in her mouth . We have level five care at the AL place… They do nothing.
We have hospice come and check on her daily, but they don’t put in her teeth. The private care giver makes sure she eats, but is basically a baby sitter. So it goes.
Anyone have success in jacking up the care from the AL place? It has been going down hill the past six months. Or maybe it is Mom going down, but the AL place is dropping the ball. Mom is supposed to get pain Meds every three hours, last one was at six am… It is 11:15 here now. Gahhhhhh.
@esobay, is the pain medication ordered by the MD as q3hours or q3hours PRN for pain? This is an important distinction. If ordered every 3 hours and it is not given within a window of 30 min., it is considered a medication error. It must be reported as an incident report and can also be reported to medicare. May I suggest that you ask to see how the order was recorded, then, ask for the quality assurance representative and report this. If they know that you are aware of what should and should not be done, (some of this is listed in the patients bill of rights) they will be more attentive. Sometimes, you have to make noise and use the proper “keywords and phrases”.
As far as the care giver goes, what were the expectations and duties listed in her contract. If they are just a sitter, unfortunately, unless they have a heart and conscience, you cannot expect more of them.
When my mom was getting questionable care at local ( well respected and highly rated ) rehab, we ask for her medical files, and I assure you we got lots and lots of attention.
MIL survived surgery and is recovering now, we were trying to convince FIL to place her for rehab in the place we hope he will go for AL.
SIL arrived at the hospital (two day drive) with 5 minutes to spare, she told the case manager to send MIL to the place we want & the gal did it. FIL found out after the fact and they transporting MIL now.
I have spoken to the admissions people and if FIL agrees to move to the IL area, they will make a place for MIL in the SNF side of the facility, this is going well. I am so thankful SIL got there 5 minutes early not 5 minutes late!
Yay some mom, whew for timing.
ECmother, it is definitely not PRN because she doesn’t ever ask for anything. She just gets more agitated. It is the second time and I am pretty mad. I am grateful to the babysitter for getting Mom fed, the Al place let that slip before.
And they had a TWo person assist for transitioning Mom, which she needed the first week after she broke her arm. Not only does Mom not need two people assist, they NEVER assist her! But they didn’t mention that. It is on moms chart for two hour safety checks, I was with her five hours and not one person came in. So we had words. I also wrote the director last visit because they do not have enough staff. I would move Mom, but the other places in town are worse. And I think moving her now is very dicey anyway.
Things were going pretty well for a while. FIL has always refused to have help in the home, but it turned out his neighbor had been cut back to part time and needed more income, so he agreed to hire her to do some housecleaning and laundry, etc. Great! Someone close by that will be there on a regular basis.
Tuesday, he had a stroke. Fortunately, SIL/BIL were on their way over when it happened, so he got to the hospital quickly. Face and left arm are affected, but his speech is already improved. It’s scary how far this can set you back - his first treatment goal is to learn to swallow. Swallow! This is going to be a long road.
He’s in the best stroke center in the area, and the rehab place associated with it is also excellent, he just has to be able to get healthy enough to go to rehab. For instance, he has to be able to swallow.
We talked to the case manager yesterday, and mentioned that although he is living alone in a house now, no one in the family thinks that is safe. She reminded us that as long as he is able to make his own decisions, he can live where he wants and family doesn’t get a vote. “Able to make his own decisions” means knowing his name, location, the year, and the president. Oh, boy. In reality, it is the case manager at rehab that will make the decision on when to release him, and what help he needs there, and we’re a long way from that now.
I bought "The Caregiver Helpbook, Powerful Tools for Caregivers " per CC advice
I feel that it is really good, and spells out many many MANY things, and pertains to all levels of caregiving, including how to plan for future caregiving. There are simple things like my dad wants to hire someone to clean out his basement, but I am worried about him hiring a “just a name and number” outfit and giving them access to his house. He has had financial papers strewn around, and if someone got his bank account number because he doesn’t think about the danger, that would be really bad. Or even just swiping some of my mom’s jewelry that he leaves out.
One of the things they say is that as long as the person is still mentally competent, and would be to a judge, they can still decide to do stupid stuff, like continue to live in their house even if it is not in their best interest. Today is the third anniversary of Superstorm Sandy, and I had a loved one who we (at least three of us at different locations) didn’t insist come stay with us, she would “be fine”. She ended up dying because of the storm, because her town did not check on their elderly and I couldn’t leave my street due to downed trees. After a week we were able to get her from her house, but the damage from dehydration and lack of food was done and she passed after that. Yet even right before she was picked up, she said “I’m fine, I’m eating, I’m warm enough, I’m drinking” yet that was not true apparently.
I am starting to assume my father will stay at his home, so we are prepping to have him have other people safely in his house. That’s not the case right now. I also have a nephew who wants to move to our area, and I have put a bug in my father’s ear about having him move into the more than adequate sized house and live with him while going to the local community college.
Strokes are very variable. Swallowing is more complicated than one might think, and partial weakness can lead to multiple issues, even things like not being able to take medications orally so IV must be maintained.
The biggest challenge many of us have is getting our parents to decide to do what was in their best interest. What finally pushed us over the edge was for all 4 siblings to get in agreement with each other about the need for mom to move. I even told her, I was asking her to do one last major thing for her children by moving. I told her she was stressing us all out so much over her care and safety that we were starting to turn against each other and I didn’t want to be so resentful of her for being so stubborn about it. I handled the entire process of getting her in and she made a real ass of herself, but now she says she wished she’d gone there years ago. She still has moments of being ungrateful and upset about not being in her home, but the way I see it, she didn’t ever make any plans on making that a reality so we did what was best for everyone. Elder care isn’t always about just pleasing the elder, but what works for the family as well.
So sorry about your dad’s stroke @MomofJandL. You will have time to work with the case mgr. and requesting a cometency eval as suggest by @jym626 is a good idea.
@esobay, double check to make sure the MD wrote the order for pain medication a Q3hrs NOT PRN, you know your mom cannot request the medication, but the MD may have written it that way. I would suggest if at all possible to be present for the weekly team meeting or on conference call. Have your concerns written down as bullet points, use key phrases, (standard of care, pain management, ask if incident reports have been filed for failure to complete 2 hour safety checks, for failure to medicate on time, etc.) The process is so upsetting for us and frightening for our elders.
And, if any of your mom’s services are paid for by Medicare, you can file a complaint with your state’s Medicare Quality Improvement Organization. (Probably not for Assisted Living, but perhaps.)
My experience is that a prompt complaint (via on-line form or fax) to the regulator causes quite quick reaction. Using the language @ECmotherx2 suggested signals that you know the rules and know they aren’t following them.
MomofJandL, my dad was no longer able to swallow after his stroke. It wasn’t until the second day that the neurologist could see how serious it was. When the doctors talked about installing a feeding tube, I had to make the tough decision of enforcing what was in his living will, where he explicitly said he didn’t want extraordinary measures including a feeding tube. The hospital provided hospice care so we didn’t have to move him to a rehab (it would have been impossible to bring him home) and five days later, he passed away peacefully.
I am not saying that this will be the case with your FIL but you may want to prepare your dh for the possibility.
Yes, the feeding tube issue raised red flags with me, not sure if DH and sibs see the seriousness. For now, there is a tube that goes thru the nose, which is intended to be a temporary solution until he learns to swallow. If he does not learn to swallow, the nurse said they might have to insert an abdominal tube surgically. That is the part that scares me, because it is a step that is hard to back off from. He just had a new living will generated (with no discussion or input from family), I think it’s a generic form for our state. I’ll read it today.
Because the tube is uncomfortable, his hands are restrained so that he can’t pull it out, although he has managed to do that once already anyway. So either he spends more time literally tied to the bed, or gets an abdominal tube, or learns to swallow. Everyone is betting on success, but I’m getting worried. Will stop by in a few minutes to see how things are going.
He can pass a competency test. He knows the day and date, the president, and the winning percentage of the last 5 head coaches of his favorite sports teams. He just makes terrible decisions, and cannot accurately judge his capabilities physically. If we get past swallowing, I’ll be delighted to get a thorough evaluation from the rehab team.
The partial incompetence thing is so scary, FIL is blowing through money at a crazy pace, especially for a guy who was
always so cheap he squeaked! If he outlives MIL, fine, he can spend his money any way he wants, but if he dies first, 80% of the income is gone and she needs SNF, I don’t think it is appropriate to be so careless and possibly leave the taxpayers with her burden when, in fact he could be saving thousands a month.
If we can get them to move to AL, we will do all we can to take over the finances because that move will take every penny they make plus the rental income from their current home.
There is a spectrum of swallowing difficulties. My mother had a stroke 8 years ago that left her with swallowing problems. She has been on a pureed diet since then, and has liquids that have had to be gradually more thickened over the past 8 years. A feeding tube wasn’t necessary, but, if it had been, my mother wouldn’t have wanted one.
FIL was able to swallow some juice and applesauce when the speech therapist came today, so that’s progress. He was sitting up in bed and in better spirits today. I checked his living will, and it says he does not want to be kept alive if he is unlikely to regain the ability to feed himself, but we’ll take it a day at a time for now. His expectation is that he will be back home within the week. Really. I guess he expects rehab to take a day or 2. Maybe he expects to drive home.
My neighbor - a young man, maybe 60 now - had a stroke about 4 years ago that affected his facial expressions and voice. It was quite odd, he spoke with an expressionless monotone for a while. You’d never know if if you met him today.
somemom, at least we don’t have to worry about his spending, he’s still pretty cheap, except that he likes to order crap from catalogs. Nothing extravagant, though. He has given money to sham charities, but I think he’d expect a parade if he gave over $100, so the gifts so far have been small. We can’t stop him, but I do mention to him when I think a charity is a sham.
shellfell, can you mom feed herself, or does she need help with that? I guess people live with all kids of burdens, but 8 years of pureed food sounds depressing to me.
@MomofJandL , my FIL (95) had a right sided stroke and is in a NH in TX. He is on pureed / soft? food which we consider a blessing since he almost needed a feeding tube. He gripes about the food and it has only been 3 months. We hope he improves enough to eat more types. He is jealous of the fried chicken.
momofjandl,
a competency exam should be more comprehensive than a quick mental status screening, which is what you describe. Most will include measures of organization, planning, problem-solving, judgment, etc. You would be surprised what a more sensitive test will discern.
According to the literature they gave the family yesterday, FIL should get thorough physical and mental screenings at the rehab center before he is released. That really will be a blessing for everybody. Once he gets there we can start working through the rehab case manager.
He was able to follow and discuss the Republican debate, and comment on which candidate did or said what - he’s not unaware of what’s going on around him. He just truly and sincerely expects to be back in his home living independently any day now. Even though at the moment he is tied to his bed, with a nasal feeding tube and 2 IVs and a bunch of monitors. Planning a course for getting back to independence is totally beyond him, I think he just expects it will happen automatically. Maybe that’s for the best - if he knew how much work it would take and the odds of success he might give up.
