Thanks @arabrab I perused a few other NYT articles by the same author and found this, which scared the *** out of me!
Yes @NerdMom88 has been a frequent discussion on this board. 3 years ago, I was proactive with my parents. In addition to health care and durable power of attorney, I got the appropriate forms from the financial institutions (7 of them!) that they do business with and got those filled out as well. I am terrible with forms so it was difficult. Once I got the appropriate POAs from each institution, I consolidated the accounts into just two investment firms that are comfortable doing business with just me. With Wells Fargo, where they do their banking, we just added my as a joint owner.
Yet another thing it’s best to do before it is too late
I was financial POA for a friend with a rare genetic disease causing severe coordination problems, , who passed away a few years back. I signed checks for her for years, as she could not. As I took over more of her financial responsibilities, pensions, investments, etc, there was never a problem after I faxed the POA form. After she passed away, I discovered a “mistake” that was very helpful. I was joint on her checking account, not just POA. Being able to write checks on her account after her death simplified many things for her sister, who was executor. After death, POA is not worth anything.
Regarding the first article, she, and her supporters ended up cheering for every hospitalization, as they bought another few months of the PT that she felt was essential to keep improving function, if ever so slightly. The ruling on therapies came too late for her, but I appreciated the change in her memory!
My dad has now been in Memory Care for 3 weeks. He is doing really well, not perfect, not 100% happy, but doing really well. He really likes the care-givers (and they like him) which is a plus. Yesterday when I went to a visit they had a new resident. Poor thing had a look of terror in her eyes as she checked all the locked doors. It reminded me that it takes time to adjust.
I have a longstanding question regarding Memory Care. The friend mentioned above was in Memory Care at end of life for a few months. I found the place to be crazy making, and I was just visiting! Residents were napping in beds that were not their own, no personal object was safe, as residents were wandering in and out of each other’s rooms constantly, picking up items and of course having no clue who owned them. How do they deal with this in Memory Care? Or are they all like that? It was a nice looking, small facility. The staff was young but kind.
My father is in skilled nursing memory care. No chaos and not because over-medicating is practiced. They are skilled, dedicated and creative, as well as appropriately staffed. It can be done.
GLM- responded on the fly and wanted to add that another way to avoid chaos is the constant availability of structured group activities (often 2 or 3 going on simultaneously to address different capabilities). Additionally, the staff tune into individual resident’s needs and preferences, so there is flexibility about how days are structured and there are adequate numbers of staff to generally keep an out for where people are, redirecting as needed. I’m sure once in awhile, someone enters the wrong room, but not the norm. The place is calm, clean and about as pleasant as possible.
Good that the staff was kind at your friend’s facility, that goes a long way. I think the quality of places available may vary by region, the emphasis on mission and focus on training. My father’s place is one section of an elder care complex that offers independent living, AL and skilled nursing care also. They are a non-profit located near a major medical hub and staff are valued. Nursing assistants and aides often stay for decades; they seem to love their work. I am hearing about more places that are focused on creating a homey atmosphere with lots to do for this population. It is definitely challenging work.
Mom has been in Memory care since Feb. People do wander into other people’s rooms in her facility, but the staff “encourages” people to stay/be in the common area, either watching TV or participating in some small activity. Mom has “lost” several small things, but they keep the “valuables” (eg her costume pearls) locked up. Staff to resident ratio is so much better there that people do NOT stay or nap in other people’s rooms, that seems unhealthy to me.
BIL in Memory care in Indiana is more like what you say. He is in a double room and no one knows which stuff goes to which person. They also have no room to wander to quieter areas (unlike Mom’s that has a sitting area full of recliners where I have found her napping several times). The difference is a big difference. … … so is the cost, though.
My dad has only been in 3 weeks, but I haven’t seen that kind of craziness. He is in a Senior Living place that has senior living, assisted living and then they just added memory care, so it is not full. They seem to have a lot of staff and a lot of activities.
I’m feeling productive today. I installed grab bars at my front door, garage-into-house door, and two in the first floor bathroom. My mom is 79 and lives here - and was ready to get all indignant when I told her what I was doing- until I reminded her my sister has ALS and will benefit from them, too.
We are attending a Walk this weekend and mom just said she wants to walk it. She forgot that she has to rest three times between the parking spot and the main group set-up area. Two miles is not within her ability level.
It’s interesting (and anxiety producing) to hear all the memory care stories and costs. I’m worried about how much longer mom will be a somewhat functioning person with mild dementia.
Thinking good thoughts for everyone in the middle of this.
Thanks for sharing experiences related to regarding memory care. Somehow after my previous experience, the phrase memory care tends to concern me for quality of life. As I work with the elderly, could stand to be more positive.
Today I saw this poem on a Poetry in Motion poster in a subway car in Brooklyn. It rang a bell for me, remembering my dad’s and stepmother’s final years.
Invisible Strings: Poems Paperback – March 29, 2011
by Jim Moore
I need some advice as to my dad’s medications. To catch everyone up on my parents, they are independent living in a CCRC, both have dementia but few physical problems.I have recently gone to the “pill box” method in which I have AM and PM doses separated by day as I suspected he was taking them erratically. Now, I can see in the pill box that he indeed misses about 5 windows in a weeks time. What bothered me most, is that one day I was there on a Wednesday and both the Wednesday AM and Thursday AM pills were gone so he obviously doubled up one day.
I feel all but one, his blood pressure medication, as not essential. He also has aspirin, cholesterol, 2 dementia medications, Vitamin D. One of the problems is the Namenda (dementia) and BP meds are twice a day so it adds up to quite a few pills. I made an appeal to his MD about a month ago to take him off his cholesterol med and aspirin and he was reluctant at the time as he feels dad has vascular dementia. I think it’s mostly Alzheimers but might be mixed. The plan is to revisit the issue next month to see if he improves on the recently started Aricept.
In the meantime, I messaged the MD and asked if we can at least change the Namenda and BP meds to XR once a day versions. He wants to meet with me (and dad? it wasn’t clear) before any changes are made. I have a “feeling” that there are control issues between myself (a NP) and the MD. I have a lot of Dr visits recently with my parents and adding another over a simple request seems a big deal to me.
How do I say that I really don’t care of dad takes any of his medications? He would be happier. The Aricept is serving to make him more energetic without improving memory which is actually increasing some problems. How can I suggest he not take any medications (besides the BP) without seeming uncaring and possibly abusive? A friend recently suggested I just stop his medications. Of course I can’t do that as I need to be his daughter and not his doctor.
@GTalum no advice, but in our family’s experience both Aricept and Namenda had fairly serious side effects, specifically nausea and stomach aches. Sometimes even vomiting.
Considering that the efficacy of both is questionable at best, the potential negative impact on quality of life is not worth it IMO.
Regarding pill-taking, can the CCRC have someone come in and remind them, or actually watch them take the meds?
@GTAlum, what kept my father’s and stepmother’s meds on schedule is that they had them with their regular meals. When my dad set the table, he knew to put out the pills. They each had a little cup into which my dad poured out the pills from the 7-day container so it was obvious to them whether they took them or not. I used different shaped pill cases for his and hers, morning and evening pills. Do your parents eat regular meals at home? Maybe you could bring this up with the doctor in the presence of your dad.
My dad was took his responsibility very seriously to take care of my stepmother, including her meds, and that made it easier to insure his compliance as well, as part of their routine. It was something he could control, just like putting meals on the table and watching Jeopardy and Wheel of Fortune while they ate, lol.
If that doesn’t seem like a good solution, maybe you could try to make the doctor your partner in resolving this situation, to defuse any negativity between the doctor and you. Ask if it may be worse for them to take meds incorrectly (double doses, missed doses) than not to take them at all. But ultimately it’s up to the patient to decide, and if the patient is incompetent to do so, then up to their proxy who is you. Not the doctor. In my humble opinion and understanding that this is oh, so difficult!
Hugs!
@gtalum thanks for sharing your situation. You, as a nurse practitioner very knowledgable about medication and diseases, have a unique perspective. I am most interested in how you proceed with negotiating the meds issue with the dr.
Many years ago my aunt confused her prednisone dosage, and she changed so much from that mixup, and we didn’t know for a little while. She was wound up, impatient, not thoughtful as she usually was, increase in appetite, and energized in a crazy way, baking peach cobbler at 2 am !
So medication mixup is a big concern.
No advice about dealing with the dr. Are there liability issues a dr has to juggle if a patient’s relative wants to discontinue medications? A protocol a dr has to follow, ie meeting with your father and you together to discuss ?
Please keep us informed, I’m sure this concerns many readers
@GTalum … I stopped all Mom’s meds, except Vit D and the anti anxiety about 2 years after she went into AL. She had been taking her pills badly for a long time, which is partly why she needed to go to AL. I couldn’t convince her Dr. to stop and felt like I might be murdering her by stopping. But 2 years in, I couldn’t see paying for the cholesterol drugs since they are long term view and honestly, no matter what, she has no long term. She actually seemed to improve after having fewer meds. The hospice case manager encouraged me in that, even before Mom got on hospice. And encouraged me to skip the flue shot.
As I told the niece of my friend who just picked up the dementia banner “What is the point?” The point of some drugs is to keep the body alive… but a shell without a mind is NOT what Mom or my friend wanted. Mom will agree to whatever anyone says, so there is no ability to ask for her views… she eats eggs at the place and she hates eggs.
My advice after the long goodbye so far is to stop meds sooner, including blood pressure ones. Consider “what is the point” on every single one. We continue the Vit D and calcium because Mom falls. She broke her arm and it healed but I’d rather not have broken hip or worse.
Since you have 2 in the same boat, perhaps there is more incentive to try to preserve the status quo, but I, personally, truly think stopping most meds is a good choice. Especially the cholesterol ones. Mom also is diagnosed with vascular dementia.
Just my 2¢, everyone has to walk their own lonesome valley. All we can do is send a hug as we pass by.
When my dad was in the psych hospital and originally diagnosed the neuro-psychologist, who evaluated him, said that her mother had Dementia and she really felt the medications were not of much help.
@esobay I wholeheartedly agree. Some of the meds my dad continued to take were to help his caregivers be able to manage him (e.g., be able to move him in and out of bed, chairs, etc., otherwise he would have been stiff and a deadweight) rather than for preventing him from dying.
@esobay Great points. When I was heads down about my father, it did not occur to me to think about his meds. I was so involved with his day to day, that I didn’t step back and take a look at the bigger, longer term picture. I was very careful and thoughtful about his DNR but now that I read this, should have (woulda/coulda/shoulda) taken a look at his meds and rethought those. Oh well. But that’s something I’ll tuck away for future considerations with others.