My mother and I live together in a co-op apartment we both want out of, for too many reasons to list here. I took my Mom to a neurologist because I thought she needed some kind of brain scan. She has fallen many times and has memory problems. The doctor gave us a referal to an imaging center to where the scan can be done. I had made an appointment and even brought some papers to the facility to expedite registration. I had to cancel the appointment because Mom says she wasn't feeling well. The MRI has not been rescheduled. The preliminary diagnosis is Amnestic Disorder.
The neurologist also gave Mom some new medication to help with her symptoms, including sleep problems. She took the medication a couple of times, but seems to be indifferent to doctor's orders.
She frequently complains that she is in pain. She has not been outside the apartment for a while. The neurologist told me that Mom's thyroid levels are too high, which can make someone delusional. I was told it's Mom's primary doctor's responsibility to properly adjust the drug's dosage. The specialist and the primary doctor know each other, and the former has been in contact with the latter's office.
So far, nobody has gotten in touch with us. I called the neuro's office recent to report that my mother had a delusional, hostile episode over the weekend. I was my hope that the neurologist would intervene and contact Mom's PCP to rectify the problem.
I am at the end of my tether. The stress is coping with all this by myself has really taken its toll. I am single and an only child, so I have no one to lean on.
Any suggestions as to which crisis I should address first?
NYCaretaker52
6 Answers
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I've had excellent luck over the years with doctors using this technique. They have time to sit down and actually read the letter, form a response, consult with other doctors, then respond. It also bypasses the gatekeepers at the front desk.
It's really difficult for doctors during the day to shift gears from one patient to another, but at least they have the charts in front of them. A phone call is harder to deal with. Give them the info and questions you have in writing, and also ask what would be the best way to communicate with them. Make sure you write cc: and the other doctor's name at the bottom, so both doctors know the other has received the letter.
I did this with our first pediatrician when I had kids. I explained that I knew absolutely nothing about caring for babies and asked that he explain everything to me without fear of dumbing it down too much. He kept that letter in the top of my daughter's chart from then on, and our relationship improved spectacularly.
I think this is a great idea. I recently started a journal detailing as many Mother/Daughter interactions and conversations. I am also writing down behaviors (ex: uncontrollable crying) and the reasons I learn about or suspect. I am always contemplating where I go from here (the caretaker's standpoint). While my Mom is not terminally ill, one of the forum contributors put the idea of Hospice in my head.
This is what it boils down to:
1. The Brain MRI the neurologist I took Mom to see to evaluate (also my doctor for a pre-existing condition I have) I had scheduled was canceled by me at Mom's request b/c she didn't feel well/not up to going out. I suspect I will be given this excuse everytime I try to find answers as to what my Mom is actually suffering from. Without the MRI, it is merely speculation.
2) The meds prescribed by the Neuro were taken by Mom maybe 3 times and only b/c I was in the room.
3) My Mom and I have the same Primary Care Doctor. We don't have any sophisticated gadgets so we did our "telehealth: session over the phone. Mom had one phone, I had the extension so we could all hear each other w/o being on speakerphone. Mom's hearing is very bad, so I had to repeat questions, fill in the blanks, etc. After a long line of questioning and accounting for all the meds Mom has in her possession, the PCP went thru a detailed list of meds my Mom should take and was explicit on when/how often. She also sent an iron supplement scrip to the pharmacy, as well as 2 other supplements, one of which is OTC.
As the doctor spoke I paid close attention and took copious notes. As the conversation came to a close, my Mom thanked the doctor very much and seemed sincere. When we were done, Mom asked "did you hear that, all that," and immediately refused to comply with doctor's orders. She had insurance, which apparently doesn't over prescriptions. The cost of the drugs never came up during our "conference" call. Mom reminded me AGAIN abt. her age (88, coming up on 89), and basically says "why bother" and I'm not spending that money b/c somehow I will be deprived of something. When I asked Mom if she'd at least take the vitamin/supplements, she said, "I'll think about it." As of today, I haven't even picked up the meds waiting at the pharmacy. I am the only child. I'm doing all the shopping, paying the bills and have not yet tackled this year's tax returns. I have met with a local CPA, and explained my domestic situation. We have not been in touch for sometime, and I feel now is the time to reach out to him. I have read that working with an Elder Law atty to fill-out papers for Medicaid is strongly advised. Today, aside from the crying, my Mom went berserk about all the noise in the area. Our bldg has a lot of grass/shrubs around it, and the fact that they were mowing the lawn or using some other power tool deeply upset her. She wanted the A/C on to drown it out, then panicked and cried when she couldn't get the A/C to start. I fixed that. I am at the point where I want to get Mom out of this apt. We occupy a 2-bed co-op which we jointly purchased. I wish I did not have to go on living with her. Her attitude, behavior, "Jeklyll and Hyde" demeanor are having adverse affects on my health, which is never take into consideration. I am fast approaching 53, unemployed, and not getting any younger. For years I have been wanting to get into a specific line of work, but I need a MENTOR first. How do I prepare for a new career, esp. with our current health crisis. I refrain from all social media save one one. I know that some who currently works in my field of interest viewed my profile. How can I focus on educational endeavors when everything is falling apart in front of my face. I cannot go on like this forever. I am a desperate soul, alone, and LOST. Please help me find the answers. Thank you.
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You might want to check with her PCP's office to see if they have a care coordinator on staff - I only just found out recently that my mom's has one, when she called to check up on how things were going for my mom. If I had known my mom's doctor had a care coordinator earlier, I would have used her services much sooner, it might have made things much easier.
If your mom is having chest pains, then I agree with the other posters here that say you need to get her to the ER immediately.
The next not easy answer- you might have to accept the fact that your mom, at 88 years old, might not want to treat any conditions they doctors may find. And that is well within her rights. However, if her answer to you, in order to avoid doctors' visits, is that she won't accept life-sustaining treatment, you might want to explain hospice care to her.
If she is found to have an illness that, were it allowed to run it's natural course, would likely result in her death within 6 months, she is eligible for hospice care. Which is paid for by Medicare. Who will provide her with medications for comfort, (including pain and anxiety), will provide her with equipment, spiritual support, a social worker, etc. Just as importantly, it will provide YOU with much needed support. But the only way to get that ball rolling is to bring her to the doctor/hospital for a diagnosis. If mom chooses the hospice route for treatment, you might deal with some reluctance on the doctor's part - doctor's are almost hard-wired to heal, and accepting hospice is tough for some of them - but if it's what mom wants, stand firm. I had to have several conversations with mom's cardiologist until he was completely on board with hospice, because (his words) he didn't want to seem to be "giving up on" my mom.
I hope you can get some needed support. It's out there, but sometimes you have to do a little digging before you can find it.
Good luck!
The doctors requested a MRI which is an invaluable diagnostic tool to establish mom’s diagnosis. You need to reschedule that test and your mom needs to get there to complete the test. What did you expect from the neurologist? He will refer you to the PCP. The neurologist is waiting for the MRI results. I suggest you also make an appt with neuro to discuss your mother’s medication non compliance as well.
I assume labs were done recently as well? The PCP will need those labs to determine therapy adjustment if necessary. If mom hasn’t been out in over a month she’ll need new bloodwork as the prior test result is too old.
It sounds like you are overwhelmed with taking care of mom. Have you considered AL or SNF? Her health issues will only worsen requiring her to have to have frequent follow up appts for medication management. Getting some seniors out of the house for tests can be challenging. In the good old days phlebotomists would go into the home to draw labs; these days that’s a no-no due to safety reasons. If mom is in a SNF she’ll be able to get labs drawn there.
Just read mom has chest pain. I agree to call 911 & have her evaluated.
Good luck!
It is my feeling that your mother is not having amnesia syndrome (rare as hen's teeth) but some signs of dementia. She isn't cooperative in her own care.
So it is off the the ER, where blood tests will measure cardiac enzymes and see if there is a recent MI. Then, in my opinion she should stay for a full neuro workup and staging.
If Mom indeed does have dementia you may be looking at a need to find her placement. I fear she is going to drive you a bit crazy otherwise.
Try to take it a day at a time, but you cannot ignore chest pain. She should be taken to the ER whether she wants it or not.
Your Mom does have a very real input here if she would just as soon enter palliative care without treatment, comfort care, that is to say. She is 88. That should be her right if she is not completely demented. You may want to ask about Palliative Care options. Not all hospitals have it, sadly, but most now do. It is a medical specialty now.
Wishing you good luck. I do know they checked the urine? They should check it again if this behavior change has been sudden for Mom.
I decided to reach out to Mom's PCP. I explained the problem and heard back from the doctor's office that same day. We did sort of a conference call with the doctor, with me on one phone extension, Mom on the other. We could all hear what others were saying. My Mom was a nervous wreck, so I had to do most of the talking and answered questions. I mentioned her feeling of being overwhelmed, chest pains, confusion and a recent delusional event. I also noted that, only on a few occasions, did my Mom actually take the drugs her Neurologist out her on.
We went through the list of meds myMom is supposed to be taking, but isn't. When it was all over, the doctor said she was prescribing four prescription meds in addition to vitamin/mineral supplements. While my Mom listened to the doctor's rundown and sounded receptive and cooperative regarding her new regimen, she has since changed her tune.
She now says she ISN"T going to take them or get them from the pharmacy. She proclaims, "I'm 88. Why do I need to bother with any of this? I'm not going through the expense, paying out-of-pocket." She simply does not want to spend her money on pills and somehow thinks she's going to be depriving ME of something -- taking something away from ME. I insisted that she is never going to feel better or get her mind functioning normally again if she DOESN'T take these medications. They wer chosen for a reason.
In the pat few days, Mom has complained of very bad chest pains, and told me this morning that last night the pain returned, and believes she had a heart attack.
She is extremely emotionally distraught and keeps asking "What is happening to me?" It is all deeply distressing to me.
However, she has expressed a desire to go to the hospital and stay a few days. She wants to have tests done. She was admitted to our local hospital a few times and HATED IT. SHE HAS VOWED NEVER TO GO THERE AGAIN. One time, they did unjustly bill her for expenses they shouldn't have.
Where am I going to take her? How do I get her admitted, except thru the ER. She needs to be at all full-fledged medical center, with everything close by or on hospital grounds. We live in NYC, but not Manhattan. My Mother is determined to have her say as to where she is admitted and treated. I can't argue with her about this --it takes too much out of me, and I'm handling this mess on my own.
Please help. Are there other areas on this site I could have what I wrote posted and get reach a broader audience.
Thank you.