My husband has dementia (Alzheimer's) and no other conditions. I wonder should I keep making him go to the neurologist when the doctor does nothing that will really help the condition? My husband has no problem going to our general doctor for anything else that I think is wrong. We went for the annual wellness visit recently and it went well. The neurologist is expensive and quite a distance from our home.
My Dad’s neurologist told a 15-minute story, then asked complicated questions that none of us could have answered correctly, then returned a diagnosis of dementia. There was no dementia. It was ridiculous.
Maybe changing to an annual visit would be good. If your husband likes getting out of the house and seeing doctors is the reason, perhaps you can take him out for other reasons. Maybe drive in the country or see unusual parts of your city. Actually taking him places may be a challenge, but driving is a good way to get out of the house and change the pattern for a day.
[There was a time not so long ago where doc visits were the only reason I could muster then gumption to get out of the house - I recognized that I was loo
king forward to the visits because they forced a change - so I started setting an appointment for me to get out. It worked wonders!!]
Long way of saying, unless you need to go for a reason, don't bother.
Being local, I could pay for transport, skipping the dingbat brother who can't remember the dates, even with reminders from me and has tried to get out of her mac deg treatments (not local so no transport available.)
I also had to ask her doc about re-upping her medication Rx. She gets a 90 day supply through her insurance, but we were on the last refill. Generally they want to see/check you before they refill. The nurse asked if I could sit with her for a TeleHealth check. I said no, because I am not allowed in, and even if someone could set it up for her, she can't hear and with dementia would have no clue what they were doing! On top of that, considering it is BP meds, it should require listening to heart and lungs as well as a BP check and perhaps some blood/urine tests - how do you do that over video???
Last month they called about my scheduled physical and wanted to do TH. Really? For a physical check up? WHAT can you do over video for that? No weight. No height. No BP. No listening to anything. Not even sure how we could do it. I don't use the camera on my PC (not even sure it works!) I don't use Face-anything. All I have is a cell phone, with incredibly bad service. Nope. Skip that. I don't take any meds, so it'll just have to wait!
So yeah - I knew I was in for a significant struggle in managing her many, many doctors and specialist.
Still, when I discovered my mom was seeing an OB/GYN every three months for a vaginal ring change-out - I thought my head was gonna explode. I mean, my mom was in her mid 80’s and she was on Homone Replacement Therapy. Seriously?
That was the first of what became many specialist visits that got crossed off the list. By the time my mother was put on Hospice care her prescriptions had been reduced to only what she needed in terms of her now occasional behavior meltdowns - an Ativan here or there. And, you know what? Absolutely nothing change or worsened beyond the natural progress of her dementia.
Ive got nothing against doctors in general but the “lather-rinse-repeat” of follow-up visits can get out of hand. And, too often they are completely pointless when a person hits advanced old age. Well, pointless beyond financing the medical machine.
There is nothing any doctor can do about Alzheimer's. Keep him moving as long as you can. I walked my mom in the park daily for five years for a quarter of a mile. In the end she had to use a specialized upright walker (cost me $700 which Medicare will NOT pay for) to keep her back straight while walking. It kept her going another year and a half. SHe was only bedridden for 3 months before she died -- she forgot how to coordinate her muscles to walk, and I had to get feeding tube so she would not die of dehydration. She died very peacefully still without narcotics and was comfortable. Mom was on hospice for TWO YEARS before she died, and that was because it was too difficult for me to get her to her doctor. I used hospice for routine labs and meds. I did all the work. And I had to ask for labs--if you ask they will do it. Hospice provided me all her supplies.
LEARN FALL PREVENTION!!!
IN THE END I had to manage her bowels and bathe her. It got to the point--with lactulose went three days a week. So I had her bowels on a perfect schedule. I got rid of the bathtub and put in a standing shower with shower chair. I got grab bars installed all over the bathroom. If mom did not have a bowel movement in 3 days she would be impacted so that is why I had a bowel schedule. The care gets more involved so either you LEARN how to deal with it OR plan on a nursing home. I had to get used to changing her diapers and keep her clean to prevent infection and skin breakdown. Mom died with perfect skin. Not a single bed sore.
If you are planning a nursing home, get him MEDICAID PREPARED and see an eldercare attorney. Be sure to SHARE BANK ACCOUNTS so you can continue to pay bills (your name be with his account) when he is unable.
WHILE HE IS STILL COGNIZANT, get a living will done. Once he forgets how to swallow water (and thick-it no longer works), would he like a feeding tube? Be mindful it can take TWO WEEKS to die of dehydration. Discuss that with him and your family. DO IT NOW. If you decide on the feeding tube you will need to revoke his hospice--regular medicare will pay for the feeding tube--then back on Hospice on discharge as a pre-existing condition so they will pay for the feeding pump, tubing and cans of feeding, syringes, etc.
Ironically mom did not die of ALzheimer's. Her feeding tube kept her needs going. She died of other causes and it had nothing to do with the feeding tube or Alzheimer's. I don't know how but I kept mom going and she died age 90..and those years were quality years for her. She never suffered. BUT a feeding tube should be a VERY LAST RESORT. It requires a LOT of care to prevent infection, checking residuals, flushing, etc. Mom never bothered it, and I bought tube tops from Amazon to keep it covered (prevented accidentally pulling it while turning her). I never did like the abdominal binder. Tube tops worked great and were comfortable.
THE MOMENT he starts wandering, he will be entering into the late stages and will require constant supervision. Mom started wandering five years before she died. THAT is when I found out all about Medicaid, look back laws, cost of sitters ($20 an hour).. Even then it is a long, long, long process before death.
Be mindful--nursing homes are NOT safe. They fall all the time, and are cesspools of infectious diseases. But if you cannot deal with the care, that's where he has to go. But high risk of skin wounds, pneumonias, falls, etc.
If nothing is done but a "follow-up" with the neurologist and there's no new meds can be tried, or therapies, then perhaps just a every other year check in is good enough.
How many of you have a BP device, working scale, pulse oximeter? I don't have any of these (the scale most of the time, fresh batteries or not, doesn't work and it isn't that old - it's been a pig since it was new and I can't be buying more all the time.) Even my thermometers are questionable!
I don't currently take any medications, so they can't "refill" anything for me.
I don't have nor do I want a Face-anything.
Never used the camera on the laptop, don't even know if it works and have no plans to check it.
For me, checkups are a yearly thing. I haven't been sick in decades. If I can't be there and have them do what they do during a physical exam, then I consider it POINTLESS. (BTW, they can't listen to your heart or lungs over the video! Seems that would be especially important for someone with BP issues!!!)
For my mother, yup, BP meds, but:
1) she's in a facility (MC)
2) so far they've had NO cases and we want to keep it that way
3) she has little or no hearing, so turning up the vol will do nothing for her
4) I can't be there with her, as they requested. Not allowed.
5) She wouldn't understand any of it even if she could hear, she has dementia.
6) As noted above, if they can't do the actual checking, what's the point?
I'm not even sure they have any way to do video chats in the MC unit. They probably would defer to us in normal times, but since I'm not allowed and have no "capability"...
If someone wants to get a visit this way, have at it. I'm not suggesting what anyone else should do. For OP, no that would be a pointless visit. Others, whatever makes you comfortable. I'm just pointing out that TH is limited in what it can be used for. If there is something "concrete" the doctor can see or hear and perhaps evaluate, great. For many this isn't the case. I don't think my insurance has a co-pay for yearly exams, but even so, WHAT is the point for me or my mother and many others in the same boat?
I just sent via the portal a question for mom's regular doc (we never saw any "specialist" for the dementia) regarding a refill for her BP meds. Currently this is all she takes, unless we have a UTI. Generally doctors will require you to be seen in order to do the refill, which is totally understandable. But like lealonnnie1, I find it rather difficult, esp with the virus, to get her there (won't stand or walk without serious support, which I can't do.) I can get transport and an aide to help, but it is better not to make trips outside the facility, esp since so far there have been NO cases! So, on the call back, the nurse asked if I could sit with her for a TeleHealth instead. Really? To do what? You can't listen to heart and lungs, you can't check weight and BP. She can't hear you and even if she could, she wouldn't understand much!!! (they tried to get me to do TH last month for my annual physical - same question: WHY? Oh, because you can get paid. Physical exam over my little phone, woo hoo, you'll do a great job with that!)
So no, I wouldn't continue taking him there.
My dad had congestive heart failure and kidney failure. He was very weak, and needed bathroom assistance all the time. His MD told us that there was nothing further that medicine had to offer. He was at the end of his life. So the MD arranged to have him put on Medicare hospice status (they had moved to AL at that time as well since he needed round the clock assistance with the ADLs.) Hospice provided regular nursing and social worker visits for comfort care only. He also signed a "do not resuscitate" order (never needed, fortunately.) He passed away peacefully beside mom in their AL apartment.