Had an appointment with the neurologist for my DW's six month update. Here is how it went -" Do you want a refill for the same medicines?" (Namenda & Aricept) Me "Oh,s there and alternative medicine available?" Dr. "No, these are the only ones approved" Me - ???? She isn't having any adverse reactions, why wouldn't I want to have them refilled?" Dr. " any change since the last visit?" Me - " Yes, she has no short-term memory at all and now she is losing her long-term memory too. She takes out all of her clothes from the closet and places them on the nightstand or the bed and takes an hour or two going through each one trying to decide which ones to wear for tomorrow, then in the morning, does it all over again. She forgets to flush the toilet after going to the bathroom and does not recognize common items."
Me - "For the past two and a half years since diagnosis, we never discussed that level of functioning or stage she is in. What stage do you think she is?" Dr. "Mild"
Me - "What? Mild? What does she have to be to be considered Moderate?"
Dr. " Well she can still wash herself and is not incontinent."
Me, "so she pretty much needs to be unresponsive?"
Dr. "Yes" Has she had a Neuro-psych test done?"
Me - "Yes, you ordered it two and a half years ago. They couldn't get a good baseline because she was so far advanced that she couldn't complete most of the test. IQ was at 50 at the time."
I left the Dr.'s office completely depressed. My DW is showing signs of transitioning from moderate to late Alz. If this is Mild, I don't know if I can make it to Late. I have been so down lately, I need a break from this horrible journey. Is it unreasonable to ask my kids to help me so I can have one weekend a month to get away? Sometimes I would love just to run away from this situation, but I know I can't. I need to be there to care for her, but I don't know who will care for me?
Vent away, Cheval - you sound like you need it after that appointment! I think I would find a new doctor. Hang in there - just like we all do when these things happen. ((((((((HUGS)))))))))))
cheval I think you should have a sitdown with kids and ask. they can refuse but at least maybe one of them will step up and give you a break. you sound like you need a few hrs of you time. we all do. and we must make that happen. can you hire a caregiver to come in a day or so a week to get out if the kids don't help? its always good to start someone to oversee them early on if possible. just say you hired a cleaning lady or a cook. fiblets. white lies that are predetermined on what we think our loved ones will swallow:) go to the fishers scale and check out your wifes abilities according to that. its more accurate than a 10min dr visit. if you have a more caring PCP maybe he could be of more benefit now.
Cheval, I agree with Vickie. I too would get another doctor, not because I think he is wrong (though clearly your DW is not mild) but because he has little compassion. A good doctor would care not only about your wife but you. There is more to patient care than simply refilling medicines. There are good doctors out there, you both deserve better.
As for asking your children for a break, no it is not unreasonable at all! They may even be waiting for you to ask them for help. I find myself treading lightly with trying to help my Mom, I don't want her to perceive my wish to help as me thinking she cannot handle her own affairs. We all need breaks and in a perfect world we should be able to rely and depend on family.
I asked for one Sunday a month, it never happened. Though I will say it has been my observation that when the father is the caregiver the children do seem to step up to the plate more often. Have a heart to heart with your kids, they may surprise you with their willingness to help. In the meantime, go get some extra hugs from Bubba ((hugs))
Thanks everyone! Oh yes Nikki, I can't wait to give him a big hug! It would be so nice to take him out somewhere every now and then to get away and recharge.
Remember what I wrote to you.... YOU matter too. When you get to the point where you are having thoughts about running away (and trust me, most of us had those thoughts) it is time for you to get some much needed breaks. It will help every aspect of your life if you can get moments away just for you. As our wise Divvi pointed out, if the children are not able to help out for some reason, please do try to find some in-home help. (((more hugs)))
Cheval, I agree with everyone else. You need to look after you. So, ask the kids if they will help out - you might be pleasantly surprised by the response. And the doctor needs a lesson in the realities of dementia - there is a lot of crossover of symptoms between stages, so I would suspect that very few patients meet all the criteria for the lists of symptoms in each stage. I know my DH certainly doesn't, and I have placed him in Stage 5. I can ask his GP next week what she thinks, but she will probably tell me that it doesn't matter what stage we put him in -its his comfort and care that is important, and are these needs being met.
Oh my, Cheval. I agree with the others. It is time for a new doctor. Your neurologist’s dreadful bedside manner might be tolerated in an orthopedic doctor, or a surgeon – where skill and expertise are paramount. But in your situation, you and your wife need a doctor who is compassionate. Though it’s impossible for a doctor to fully understand how this disease devastates a caregiver (unless they’ve dealt with it personally), a little bit of empathy goes a long way.
Definitely recruit the children! Not only will it give you a much needed break, it will give them a better understanding of what you are going through. Because odds are they don’t really get it either.
mary22033 "Though it’s impossible for a doctor to fully understand how this disease devastates a caregiver (unless they’ve dealt with it personally)" This is why my DH's GP is so good - her mother has dementia, so she has dealt with it personally, albeit not from a spouse's perspective. So she is kind, and compassionate, and empathetic, and I love her!
bqd & mary22033, yes, I am going to find a neurologist that understands this disease and can give my DW more compassionate care and better feedback for me. I know that our local chapter of alz.org has a referral list, it s a good place to start.
Cheval, you are the expert in your situation. Any doctor is just there to assist you and prescribe meds. Anyone here can tell you "If you've seen one person with Alzheimer's, you've seen one person with Alzheimer's." There are similarities, but every poor soul with this disease is unique. Take the reins, honey, and pull up those big boy boxers! And do get a break from ANYONE who will give it. I was blessed in that department. In 2010 when Lloyd could no longer be left alone while I worked midnights, I took a one-year family medical leave and ultimately quit. I worked midnights for 5 years while he slept and came home and cared for him during the day. It damn near killed me. In 2010 I had a third story added to my house and my youngest daughter moved home with her family and all I paid was the mortgage and the water and she took care of everything else so I could take care of Lloyd 24/7. Without Maria, I would not have been able to care for him the way I wanted. And she used to practically push me out of the house to get a break because I didn't want to leave him. (Ave my Maria!) And now that Lloyd is gone, she is still here - having lost her house in this deal. When I am gone, my house will be hers to do with as she pleases. This is what family is all about.
Cheval, it is my understanding that the Alzheimer's Organization is not allowed to give recommendations on doctors, lawyers, long term care, etc. They will give you the list of neurologists out of the phone book. At least that's my experience, and I've been told it's a nation-wide policy.
Hi Janet, My daughter volunteered at the Dallas HQ this spring and they gave her a list of neurologists that specialized in Alz care. It is true they do not make a specific recommendation, but at least I know that the list is specific to Alz.
((((((cheval)))) Totally sucks when you have to deal with a doctor without compassion. I had to get a different mental health team because the first group wouldn't do anything for him. Put the strong advocate hat on, such is life in ALZ world. Feed your horse a carrot for me.
Oh Cheval, please find someone to give a weekend of respite. You will be so refreshed and ready to deal with locating a new doctor. Also the stages sometimes have blurred lines between them. In other words, the stage could change rapidly like in one incident or one day.....this is a cruel disease but you do need a break every now and then. I do not know what state you reside in, but some states have aging councils or agencies that can refer to someone that can give you some respite.
I believe, inspite of the education and knowledge of a medical provider, you are the one who truly can assess the daily capabilities of your LO. The medical doctors can run tests and this gives them a basic knowledge, but your input into the situation is of critical value. If you have a doctor who will not listen, support, and offer you help, you have a doctor who is either incompetent or has no compassion, or both.
I believe that there is a website available where patients rate there doctors. Patients score the doctors and provide feedback as to why they scored them this way....Sorry but I don't know the name of it. I happened to stumble on it when I was relocating from out of state. It's nationwide. Perhaps this could be of some value in locating a neurologist who can provide for you and your wife the support and care you so desperately need.
I think it's called "Rate Your Doctor" and is similar to the one called "Rate Your Professor." If you have a nurse friend or a very good FP, their recommendations are often good.
Yes, "Rate your Doctor" was the website I used. I found it very helpful (when I relocated to a new state). I was very satisfied with the doctors I selected from this website. I would recommend it and use it again.
Cheval, you really don't need a neuologist, you already know what is wrong. Do you have a good family doc, they will probably write the scripts you need and be more compassionate. That what I done! My doc is my dh's doc and he will do something even. when I call.
my husband neuro dr considers him to be mid stage and he still washes and dresses himself and is mostly able to function normally although he cant remember too much and dosent do the phone or anything to do with helping me with stuff that needs to be done on a daily basis this week has been rough I have no one I can have him be with if I need a break one son in jail at this point and one son having emotional and mental issues so I worry about him to the one in jail we don't visit all the constraint to visit I wont put husband through and I wont leave him alone to do this he knew what I had to deal with before he got in trouble so its his to deal with other son is gay and has always had major issues with people and their judgements of him so he was in a care faculity this week he and I have been close always so it was hard for me to see him in danger of taking his life hopefully with the intervention hes had it will help I want to run away too but like you im here and will stay here
Ky caregiver, you are right. There were times I wanted to try specific meds that friends on her had mentioned that were successful for them. The neurologist always said no. The family doctor always looked them up in his PDR (Physicians Desk Reference) and wrote the prescriptions. The first was Marinol (dronabinol)(marijuana pill). He started out on 2.5mg twice a day. Insurance wouldn't cover it and it was $250 per month. Great stuff. He went from 117 to 131 lbs. in less than a month. And he did things he hadn't done in years...knowing my sister's name and actually comprehending what I was saying. But when he needed the increase to double the mg amount and double the out-of-pocket expense, we could no longer afford it. The second was liquid Neurontin. It stopped the myoclonus, helped him sleep at night, reduced his antsiness and pacing. AND I only gave him the equivalent of 100mg twice a day. Our family doctor was a godsend. He would try anything. The neurologist was not willing to try anything new or different from what he was doing for everyone else with this disease.
There are wonderful neurologists out there, but I agree once you have the diagnoses and are beyond the mid stages, I don't see the point in continuing to see a specialist. When Lynn tested in the single digits I asked that he no longer be tested and I told the VA I wanted his PCP to oversee Lynn's care. At the nursing home it is a PCP that takes care of all the patients, no neurologist at all. Though they do have a neuro-geriatric psychiatrist to handle the more complicated cases and medicines.
Thanks all, I hadn't thought about a PCP, but everything you say makes perfect sense to me. I had that thought in the back of my mind anyway. I thought since he really isn't actively treating her, what purpose does he serve other than renewing her Namenda and Aricept perscriptions? I came to the conclusion of not much.
I need to find a PCP for myself anyway, so we can kill 2 birds with one stone in that regard.
I believe that there are some very compassionate Neurologists as PCPs. However, if you plan on getting guardianship though the court I would highly recommend the expertise of a Neurologist over a PCP. Guardianship can be dicey depending on the advancement of AD.
Ouch! Ok, I deserved that one Nikki, lol and you are forgiven. The talk went well and we will put together a schedule that will work for everyone. Relief is not too far away now.
Thanks Lullie, We got all the legal stuff done shortly after diagnosis. We didn't want to wait until it was too late.
I am glad to hear the talk with the kids went so well, excellent new! I hope you find that having a regular break scheduled will give you something positive to think about and plan for. ((hugs))