Six month wait to see his neurologist

nancyj194

My DH's appetite has gone down even more the last few weeks resulting in loss of weight. He weighed in at 145# during our October visit with his neurologist, in 2019, and is just below 120#s now.  Having read some posts on here, I know loss of appetite is common with Alzheimer's. DH is late stage five and early stage six.  

I called to make an appointment with his neurologist and the first appointment available was February of 2022. Good grief.  He is on a cancellation list, so he may get in earlier. 

We have a new PCP as our long time family doctor retired. I don't have a lot of faith in the new guy, even though he only sees Medicare patients, so he should have some familiarity with Alzheimer's.  His PA has no clue and did her best to completely ignore me, when I took DH into the office for a swollen arm and hand. They do have our medical power of attorney on file.   My husband told the PA, he had fallen and then his arm became swollen. I said, he fell ten days ago and skinned his knee. She glanced at me and then looked back at DH.   She then said to him so was  the swelling was from the fall?  He said yes it was. I then offered to leave the room if she would prefer.  She then asked me if I typically do the talking and I said, only if you want to know what happened.  She backed off at that point.   I then told her that five days after the fall he complained of pain in his shoulder that it was dislocated. He said it was from the fall. I told the PA that my physical therapist was there the day his shoulder hurt and checked his shoulder and said it was not dislocated.  Then I added that I gave DH an Aleve and iced his shoulder and the next day he was in no pain at all. 

The PA diagnosed his swollen arm as cellulitis and put DH on round of antibiotics after giving him a shot.  The swelling did begin to go down and was completely gone in less than a week.   

Anyway, with that experience, I would rather wait for the neurologist, as I do not know what to expect from the physician or the PCP he has. 

I bought some Boost for DH to drink and he will drink half a bottle on the days his appetite is off. Someone suggested I fix what DH likes to eat. I said I've been doing that our whole married life of 56 years.

Perhaps I am wrong in my thinking of waiting for his neurologist concerning DH's lack of appetite and weight loss, so any comments would be appreciated.  

Paris20

Six months is obviously too long to wait. Is there a nurse practitioner or PA in the neurologist’s office whom you and your husband can see? It’s been my experience that they can serve as gatekeepers who can open that gate, i.e., allow you to see the doctor sooner rather than later. Although you’re not fond of the new people at your PCP practice, is there anyone there who might advocate for your husband’s being seen sooner? With Covid, practitioner burnout, and insurance bureaucracy, it is becoming all but impossible to receive proper care.

One thing that my 99 year old mother found when her appetite lags is Ensure pudding. I bought the milk chocolate flavor on Amazon. My husband, who has lost 25 pounds from the start of his Alzheimer’s diagnosis several years ago (he was slightly chubby back then), thinks he’s eating regular pudding. It’s that good. My daughter bought some chocolate protein powder but that’s harder to disguise.

Based on my experience with my husband, I’d say six months is an unacceptable time to wait. In your place, I’d request a call-back from the doctor if that is an option. My husband’s neurologist uses a patient portal online and I find that’s the quickest way to hear back from him. I hope one of these suggestions works for you. Good luck.

Stuck in the middle

Without seeing your husband, I would guess he is losing muscle weight due to inactivity.  I base this his history of falls and seeing a physical therapist.  

Inactivity causes loss of muscle, which causes falls.  Inactivity also causes loss of appetite.  Feeding an inactive person more will only make him fat and more prone to falls.  If he will move around more, he will eat more and become stronger.

I don't see a role for a neurologist or a PCP in this.  Adopting an old dog who has outlived his human, for the two of you to walk together, might help.

loveskitties

Rather than giving up on the new PCP, perhaps you could get an appointment for you to discuss DH's dementia and your concerns about things, particularly when the NP is the first to see him at any appointment.  Of course this would have to occur without DH.

It might help to get everyone on the same page for any future issues DH needs to be seen for.  PCP could then be an advocate to the neurologist if he deems earlier appointment is required for med changes.

Ed1937

loveskitties wrote:

Rather than giving up on the new PCP, perhaps you could get an appointment for you to discuss DH's dementia and your concerns about things, particularly when the NP is the first to see him at any appointment.  Of course this would have to occur without DH.

I think that is a good idea. My wife and I have a new PCP since January of this year. We always have our appointments together, and we just had one a few days ago. I cancelled hers, and went to see him by myself so I could give him information that I couldn't if she were there. It went even better than I expected. He told me about help that he could help get for us, and he now has a much fuller understanding of her condition. He suggested a few things for me, but I didn't feel I needed them yet. He told me to just let him know how things were going, and if I need help, just let him know. I think it might be beneficial for you to go by yourself.

Jeff86

I think if I were in your shoes I’d be concerned about having a neurologist with so little appointment availability.

Marta

Nancy:  neurology is not the appropriate avenue for dealing with weight loss. 

I recommend you schedule with a PCP for an initial work up for this issue. 

dayn2nite2

Jeff86 wrote:

I think if I were in your shoes I’d be concerned about having a neurologist with so little appointment availability.

I live in a large city with 2 medical schools and 16 hospitals within a reasonable driving distance.  Six months is normal.

And I agree that the neurologist is not the appropriate specialist to deal with weight loss or appetite.  Start with PCP.

Jo C.

Agreed.  Make early appointment ONLY with MD; let appt. clerk know you will not accept an appt. with the PA for that visit. (I wonder if the PA has much experience with dementia- sounded a bit lacking insight.)

If you need to, you can do as Ed did, (I have done this too) and make an appt. ONLY with the MD only for yourself without your husband so you can speak face to face in  detail regarding all the challenges and changes and then make a different appt. for your husband; at the same time, for a few days or week later, with only the MD for that appt. with your husband so you can be seen together.  At least this will get you past the PA for those two appts. for this needed in-depth exam by the MD so he gets to know your husband and you at the detailed level he needs to have and the PA can be used later at next appt.

Sometimes, it does help to write a detailed but succinct memo outlining all the issues, challenges and changes and get it to the MD or PA a couple of days before the appt. so they have the information they need prior to assessing the patient.  One can carry a copy in their handbag to the appt. just in case the MD or PA did not get or read the one sent; one can get it into their hands prior to being seen in the exam room.  I did this by faxing the memo with a date sensitive to the appt. on it; let staff know it was coming and was time sensitive and needed to get it to the MD that day and then followed up later in the day to ensure it had been done. Things had got that dicey re my LO by that time.

Frankly; I would not like to be handed off if matters are important.  I find my relationship with my physician to be deep and one of trust.  I prefer NPs, to PAs; it is my bias such as it is; and they can add much to a practice, but one still needs to ensure one keeps up the relationship with one's physician too if one is going to be part of an MD practice.

As for the length of time waiting for a Neuro appt.  When it was important, what I did when we ran into this was to make an absolute kind and sweet thankful pest of myself. I made "best friends" with the appt. staff at the Neurologist's office -  my LO was placed on a cancellation list, but I personally called each and every day to find out if there was any cancellation for the next day or earlier in the future.  Such a pest, but they at least did not forget me and since we were on a friendly kind relationship, I had no problem.  Sometimes that cancellation list is not stuck to in order and I did not want to get buried farther down the list which is slow moving at best.

I also found to my chagrin, that it helped to be a little dramatic about the need to be seen; (never, ever lie), but the clerks are busy and hear so much that a bit of build up sometimes helps to get through their usual daily noise.

When we had a very real problem needing addresssing and appts. were months into the future,, I also called and asked to speak to the Neurologist's nurse; explained the difficulty and she actually cut through the  red tape and we were seen within just a few days.   Doctor's offices often will keep a slot or so open for urgent matters, not so for routine appts.

And, sometimes MDs will indeed use the computer communication with the patient portal to read what patient's write; BUT in the primary office, bet it would be the PA that reads and screens these communications.  May be different at the Neuro office, so if you have a deep need, this may be a good way to gain access to the Neurologist if he/she uses this method of communication.

Sometime it is the small things that drive us to distraction and make things even more difficult and wears us down.  Best wishes being sent your way,

J.

nancyj194

Thanks all for the great comments. I do appreciate everything you said.

My husband has an appointment this coming Friday for a wellness exam, but beings it is a Friday, it means we see the snarky PA. I will call Monday and reschedule so we can be there when the physician is not off. 

The neurologist is at the University and we do like him. He was who diagnosed DH with Alzheimer's. 

Stuckinthemiddle, I agree with you concerning what may be causing the lack of appetite as DH has stopped doing the things he used to do, such as digging dandelions and other weeds, mowing the lawn, washing the front window and door glass. Pretty much everything he has been doing, has stopped.  

Our dog died on July 7 after being diagnosed with gastrointestinal lymphoma. We opted for chemo treatments, which made her so terribly sick, so we stopped after the first one, and had her set free. I was devastated, but DH cleared her stuff out of the bedroom and never mentioned the dog again.  The walks around the park ended. He has never liked to go for walks, but would ride to the park with me and the dog and do our walk then.  

Getting another dog is probably not an option, as he became so short with our beloved dog. He never abused her physically, thankfully.  He also left gates open and doors, so the dog would wander off and became lost more than once. One time when I discovered her gone and called our son to please come help look for her, DH said, why is he coming, the dog is gone. 

DH refused to help look for her and went into his garage.  Thankfully a neighbor found the dog just before darkness settled in less than a block away. 

No, I cannot deal with getting another dog.

Paris20, I will check out the puddings and see if DH would like to give them a try. Thanks!

Every night I give DH a small bowl of ice cream and he eats it all. Too much and it melts and goes down the drain.  

Ed, I cannot go to the doctor without my DH, so that option is out for me.  

Thanks again, everyone.

nancyj194

JoC, I just now saw this. Not sure how I missed it, but I did.

Thank you for the info on how to perhaps get into see the neurologist sooner rather than later.

I shall give it a try and  see how far I get.  

As for the PA or whatever she is. We are so new to the office, I really don't know what she is. 

Before I had my knee replace in April, I needed an EKG and got in as quickly as I could. Of course I had to see the doctor's assistant and soon after she came into the room, she made a comment about the ortho surgeon doing an unnecessary surgery on my knee. I was shocked at her insinuation and said I had sought him out. She didn't back off from her statement.

When I tried to talk, she cut me off, even though she had happily shared with me her time of living in California.  I guess her comment about staying on topic was only meant for me.

The EKG machine was not working correctly, so I left there not really sure if I had some heart issues or not, then proceeded to have a panic attack two days later. The room turned black and I remember thinking, is this what dying is like? I took a breath and the darkness started receding. 

Anyway, back to my DH, the last few days he is eating better. Last week was a strange week for him, even though I fixed  him what he likes. 

Yesterday afternoon, he fell in the flower bed trying to cut off a vine from the yard next door, hanging over our fence and covering a footsteps plaque. He could not get up initially, but finally with my help did manage to get back on his feet again. He had a few scratches, but nothing serious. Never a dull moment living with this disease. 

Thanks again, for your comments.  

DJnAZ

The previous comments regarding waiting times to see a specialist, specifically a neurologist, are too familiar. While we live in a small town, we have two larger towns within an hour and a major city 90 miles away. I thought there would be a neurologist that specializes in cognitive and memory diseases available somewhere. Wrong!

4-6 month waits are common to see any neurologist. An appointment with a NP or PA in a neurologist's office is at least a month out. And to make the situation even more difficult, the doctor's specialty may be in sleep disorders, epilepsy or something not really related to dementia. Yes, the doctor has has training as a neurologist. But probably without extensive experience with dementias.

Further exacerbating the situation, we are limited by my wife's ACA (not Medicare) insurance. Getting authorization to go out of network is difficult at best. Finding a doctor that will accept her insurance is another issue. I located a neurologist at Mayo Clinic that specializes in cognitive disorders and dementia diseases. Her insurance will not approve.

No doctor can change the inevitable. But after a contrast enhanced MRI and CT scan I would like a doctor who specializes in memory diseases to thoroughly evaluate her. We are very early into this awful journey. I hate to say it, but it appears her prognosis is a foregone conclusion by doctors and insurance companies who have essentially written her off. 

I have a feeling this is just the beginning of my frustrations.

Crushed

The last time DW saw a neurologist was 2013.  I was candidly told there was nothing a neurologist could do and all treatment would be symptom oriented and supportive.  She has no other chronic health issues.

nancyj194

DJnAz, first I must ask is that a Westie or a Cairn?  I lost mine in July and miss her terribly each and every day. This is the first time I am without a dog my entire married life. 

Getting another one is not an option I will explore with DH's advancing Alzheimers. I am sad, but oh well.

Seeing a neurologist does entail a lot for you at this point. I am shocked that her insurance will not approve a visit to the Mayo clinic. Can you appeal this or have her family doctor advocate in her behalf? I used to write letters to the insurance company and sometimes did get positive results.  

Crush, 2013 is a long time, but I understand what you are saying. My DH's neurologist suggested every six months to visit him, but then said if nothing new had come up, it was fine to wait until something did.  

At this point, I scheduled a visit with our new family physician in three weeks for a wellness check. Hopefully he will have some suggestions for the loss of appetite, which for the last 5 days or so have oddly resolved. 

DJnAZ

Nancy...that is a Cairn. We lost her last November about 3 weeks short of her 17th birthday. We miss her a lot. But like you said, with all that is going on now having another pet just isn't realistic.

Our primary care doctor got involved writing letters and making phone calls to BCBS to get Mayo Clinic covered. I called BCBS several times as well. While that effort went absolutely nowhere, it didn't matter as we later found out Mayo would not accept my wife's specific BCBS policy anyway. Mayo would, however, take a $5000 cash deposit and bill us for all charges over that amount. While that clearly was not an option, the first appointment we could get was in 4 months.

Crushed...although we are early the stage with a diagnosis of Mild Cognitive Impairment, it is becoming quite clear there is limited value in continuing to see neurologists/specialists. It becomes, as Einstein said, a case of doing the same thing over and over again, but expecting different results. 

Crushed

DJnAZ wrote:

Crushed...although we are early the stage with a diagnosis of Mild Cognitive Impairment, it is becoming quite clear there is limited value in continuing to see neurologists/specialists. It becomes, as Einstein said, a case of doing the same thing over and over again, but expecting different results. 

I would note that the Kaiser PCP could consult the neurologist if needed an the PCPs were very experienced  in managing dementia patients.  Its a kaiser strong suit,

nancyj194

DJnAZ, I am sorry you lost your beloved Cairn not so very long ago. Even though yours was almost 17, it was still too short of a life. 

 I was hoping Brinna would live long past her 15th birthday, but it was not to be when she was diagnosed with gastrointestinal lymphoma. We tried chemo, but that did not go well. I will always miss her sweet presence. 

Wow, the Mayo clinic certainly was upfront about their money requirements. UFF

Insurance companies can be a bear when it comes to authorizations it seems. We have Medicare and my husband has Humana as his secondary, which requires no pre-authorizations, thankfully.  Our first appointment with the neurologist at University Health Center did require a letter from our family doctor before they would see my husband. Our doctor recommended University to us, so that went quite well. 

This journey can be so very difficult. This year has the end of our traveling written all over it. We've been so fortunate to have traveled many places throughout the world, but there were more places yet to see. Perhaps one day I will venture off on my own. 

Stay strong, DJnAZ

DJnAZ

Nancy...our Cairn lived a long and full life, traveling with us many places including the three years we lived in South America. She was a great friend and is missed every day. Considering what is now happening with my wife and MCI, it is ironic that our vet diagnosed our Cairn with "doggie dementia" about 6 months before her passing.

Unfortunately our traveling days are now limited to memories, photos and You Tube videos. Although I am using my most persuasive powers to convince her that we should move to Spain. While we can live so much better for considerably less, the issue is getting health insurance that does not exclude pre-existing conditions. Although this could work and if it does it will definitely be our final big adventure.

If not, I may make the trip someday. Alone. Time will tell.

Take care!

nancyj194

DJnAZ, that is interesting your beloved Cairn was diagnosed with dementia. How ironic considering your DW has it, too. 

What a great little traveler your Cairn was. All that mattered was she was with you and your wife.  

We've been to Spain three times, but only been to Central America. SA was on our to do list, but it never happened. 

We had two other Cairns that we always took to the outer banks of NC, where my sister and husband had a beach house. Both dogs loved the ocean and sailing off to Cape Lookout to bring back sea shells. 

Take care,

Nancy

DJnAZ

When we moved to Uruguay from Southern California, we flew from LA to San Salvador to Lima to Montevideo. 35 hours in planes and airports. Our Cairn was always a trooper. We lived in Montevideo for a year, then to Piriapolis and Punta del Este. A Cairn Terrier in South American is something of a novelty. Looking back I have to say, she adapted better then we did. 

Now that life has dealt us a difficult hand, I really wish she was here. She was a support system that I don't have now. I miss her...a lot. 

dayn2nite2

To add to the "wait for appointment" experiences, my primary care, who is in her 40s, has decided to leave medicine completely and I was just going to transfer my care to one of the physicians in her former medical group.  If I don't care which one I see to establish care, what day of week and what time of day, the first available appointment is....mid-October.  I'm not a new patient to the practice, I've been seen there for 3 years multiple times per year.

There is nothing remarkable about this practice, it serves a purpose and was in a convenient location for me.  Looks like I'm on the hunt for a primary care with more availability.  I received a letter from another specialist I see notifying me that he is retiring in 3 months and I'll need to replace that provider also.  Better start now, I guess.

nancyj194

Dayn2nite, what a hassle to change doctors in the same practice. It seems like so many things have fallen apart since the covid swept the world. Not sure if things will ever get back to the way they were.  

Yikes about the other specialist retiring. When it rains, it pours. 

Good luck in your search. My luck went out the door as I searched for a new primary care doctor. The ratings were poor at best for most practices. So what's going on? No clue. 

As for now, I will stay with the latest primary care doctor, who might work out, eventually. At least the staff is pleasant and receptive. The doctor is young and not quite up on Alzheimer's, but I'll be patient and do my best to keep him informed. The one I will do my best to stay away from is his nurse assistant. Not sure what her title is, but she isn't someone who I find helpful in any way.  The two times we've seen her, I've left feeling so stressed. 

So, my best wishes in your search. 

Nancy

nancyj194

DGnAZ, I am not surprised your Cairn adapted so very well with the move. She had you two and that was what was the most important in her life. Well, that and food. 

Your time in Montevideo, Piriapolis, and Punta del Este sounded lovely. It's great you were able to experience those places. I've always wanted to live in Tuscany, but not knowing the language would make it difficult. I'm happy to have just travelled there. 

This morning, I awoke missing Brinna and our previous Cairn and her sibling, who my daughter had. Having them has been an amazing, fun, and memorable experience. It all ended way too soon. 

Nancy