I see her almost every day. Her ability to help herself is slowly slipping. Her gynocologist told me personally that I could just call and he would refill any medicine she needed. I took this to mean she did not have to be examined any more as it is painful with her vaginal atrophy. Her heart doctor told me she has a heart slowly degrading and when he saw her it would just be to talk to her. I took this to mean he would refill heart medicine with a call and he did not need to see her. Not sure here. What I am wondering is if a gerontologist would be able to serve her every need better as opposed to her GP whom she "loves" and who tells her that her mind is strong when she knows it is not. I simply feel that I am failing in not getting her checked by someone else. Her mental decline is marked as of the last 6 months, just having a conversation is difficult when talking. Should I take her to someone else to check her meds to make sure she really needs all of them and if they are not causing some of her mind slippage; can some medicine be reduced. Incontinence controls her life now (she still walks with a walker). What would you do?
I hope my mom’s story can help you.
My mom became (gradually) severely over medicated following hospital stays for various problems over a number of years. Doctors just kept adding on this and that prescription drug.
It was Mom (and Dad) and also Mom’s cleaning lady (Mom did not live with me at that time) who all jointly first alerted me to the problem. Mom said, “They just keep giving me more medication and I feel much worse - I think all the medications are making me sick”- (she also told her doctors this). Dad said, “This is ridiculous, I asked them to look into the medications before prescribing-this is too much for any one person to take, but they won’t listen” and the cleaning lady called me and said, “Your parents keep complaining about all this medication and they are probably right. This seems like too much.”
Mom’s reactions to these medications became so severe that she mentally and physically declined to the point she didn’t know time or place and even lost the ability to recognize us. Dad had to hire help to care for her. Visiting nurses, OT, and PT started coming out twice a week. Everyone said the same thing: cognitive decline, dementia. The medical charts suggested Alzheimer’s. The doctors visits were frequent, but short. Mom started having difficulty ambulating and couldn’t follow directions or score well on a mini mental. They basically wrote her off. She was seeing 5-6 doctors very regularly. They were all asleep at the wheel.
Dad was imploring all of them for help and explaining that Mom was over medicated. The doctors would just nod and not truly listen to him.
When Dad lobbied me, I’ll admit, I didn’t react as quickly as I should have. I did go there and look at the medications and think, this does seem like a lot to take. But she was elderly and her decline was typical for someone her age. Her doctors were highly credentialed medical professionals.
I decided to check this all out-to just give Dad the peace of mind and attention he needed.
I went to the pharmacy Mom used and got a complete set of those “stapled-on” lengthy print outs. I charted out the warnings, side effects and interactions I looked up the recommended dosages and researched the drugs on the Internet. I spoke to old friends who were in the medical profession.
Some of her dosages were suited to much larger people. Most of her drugs had side effects that corresponded with her most worrisome symptoms (dizziness, falls, confusion). Several of her drugs had cautions that they should not generally be prescribed together.
Luckily her primary care provider was on vacation when I went in, armed with conclusions. She probably would not have listened. Her “sub” who had never met Mom did listen, however. Mom had to be gradually weaned, and carefully monitored by physicians and family. The total weaning (and medication reduction) took about two years. Some changes were made that day, others had to be gradual to prevent her body from going into shock.
Visible improvements were immediate within a week.
Mom conpletely came back. For me and Dad it was a miracle. She lived for many additional quality years, always recognized us, felt better, enjoyed life. She started walking and within several weeks, was able to build up to walk for two miles, without a bench break- no falls, dizziness or confusion. Dad was frequently crying tears of joy and gratitude.
Visiting nurses and doctors were grateful for this experience and later communicated that Mom’s story helped them help other patients and families. I have written about this on this forum (and strangely, some individuals have sent me hateful messages).
My parents are both gone now, but this was one of the true miracles I have experienced in my life and one of the reasons I visit this site.
As for UTIs, I was a skeptic when I joined this forum. After the first UTI while in MC, I became a convert. Mom had classic sun-downing, becoming almost a raging beast late afternoon into early evening, demanding to get out, had guests coming, needed to go home and get things ready!!! However, more recently we've been having bed-wetting episodes and other "accidents". This was not normal (although it could be part of the progression.) She would refuse to get up at night and decline assisted trips to the bathroom during the day (some recent non-injury tumbles has resulted in refusal to walk, but she will "scoot" herself along with the transport chair and head to the bathroom.) Previously her accidents were because sometimes she couldn't undress fast enough. We took all her undies away and leave disposables instead, which has helped. Anyway, they tested her and sure enough another UTI! No raging this time, but hopefully treatment will resolve the bed-wetting!
I would, along with getting the consult, check for a UTI. Typical symptoms don't apply for those with dementia. It just might contribute to her having more of an issue with incontinence. For that matter, not everyone gets the "typical" symptoms - my doc called in an Rx for me once, years ago, after a physical, telling me I had a UTI - really???
One thing is that she has the 'old doc' completely snowed about her encroaching dementia. You talk to her longer than 10 minutes and you know something is wrong--a new doc would pick up on that.
I have no say in this, we 4 sibs who cannot get near her anymore just leave well enough alone. Until she has some major fall or health issue, we decided to let it go.
Good luck!
I agree that yes, it would be wise to see a geriatric specialist if possible. (Maybe you could do a one-time consult then still see the GP your mom loves, if your insurance allows?) I'm no doctor, but based on our family's own experience caring for my mom, it sounds like your mother may have a UTI, which can dramatically affect mental clarity but fortunately usually responds quickly to antibiotics.
When my mom lived alone, she used to also see her regular GP and RNP, who were wonderfully caring but prescribed lots of meds. When she moved in with us in a different town, we started her with a regular GP (who basically did the same thing, just refilling scripts).
Then we switched to a PCP(primary care provider) board certified in geriatrics. Aha! This doctor knows elder care. For example, many meds affect the elderly differently than younger patients (some meds have little benefit but heavy side effects), so the doctor ordered lab work then cancelled several of my mom's meds; UTI's are common among the elderly, who may not notice burning, etc., but caregivers will notice increased mental confusion, and a quick UA (urinalysis) can confirm if a UTI is the reason; eyes, teeth, and feet are critical to watch, especially for elderly diabetes patients; and she (the doctor) refers out to specialists as needed, including the neurologist, who handles the memory meds. Mom sees doctors often, 2-5 times/month, but so far she can still live with us. We also speak often with the pharmacists at the local pharmacy which handles all mom's meds, especially if a med gets missed or we wonder about an OTC drug.
I hope some of this is helpful on your journey with your mom. Please keep us posted.
Hugs and prayers for strength and wisdom each step of the way... for you, me, and all of us on this challenging path. 🤗🙏❤️
A gerontologist will be better at figuring out any medication interaction. The pharmacist can also look at what she's taking and flag any interactions but can't make any suggestions to change her meds. When was the last time she was checked for a UTI? It can worsen dementia symptoms but can clear up with antibiotics. Wishing you peace as you help her.
Thanks
Due to a recent change in insurance, I changed my mom's treating to a gerontologist. He completely understands her life wishes and it's been a godsend to talk with him regarding my mom's treatment plan which is no treatment plan. He has put in place forms that will allow my mom's wishes are carried out and has provided me with valuable advice on what I should do and should have on my person when mom is hospitalized.
She is becoming forgetful and the filters are off, so it's an interesting place we're in now. It's difficult getting her to the dr, so I have to select what appointments are needed and which are not; again, based upon her wishes.
It's not easy, I know. You're not alone. This site provides valuable perspectives and advice.