Hi, My eldery mom has been diagnosed with severe depression and memory loss and is on anti-D meds. She is also starting testing of her cognitive abilities to see if she has dementia, etc. I feel my also elderly dad is not equipped, including his memory, with asking the right questions and sharing all details with the main doc, neurologist, and psychologist. He and mom finally gave the primary care permission for me to speak to him and I have yet to. I feel I need to go to the appointments to help lead what is shared and questions to ask. My dad is waiting for next appointments to bring something up to the doctors. In the meantime her meds need adjusting based on her condition worsening and new side effects. My hubby says I should just show up at the appointments but I am concerned about a public confrontation and upsetting my mom. I can call the primary doctor to tell him what's been going on and ask him to call the other doctors? My dad will be mad, but he did give me permission to speak to this one doc. Any advice is much appreciated- thanks!
My mom didn't want me to go in with her, but on our way home I would ask her did you remember to tell him that this happened? Or did you tell him ....? She would say I forgot. This is when I realized that this was more than just being at the doctor, now I feel all better. So after 6 months (she saw him every 3 months), I asked her did you tell him about ..., after only about 10 minutes with her doctor, I stopped they doctor, he had walked her out to the reception desk. I explained that she was having trouble. She would forget to turn off the stove or the oven. She set paper plates on fire, because she would put them on the stove with that flame burning!
From then on, I would go in with her, I had a notebook and I would keep it and let the doctor know what questions or concerns we had. I kept track of her blood pressure.
When my dad retired, that's when he started seeing a doctor, they became a package deal. Both my mom and dad gave permission for me to be with them.
If your dad is having memory problems, then you really need to be there to be sure that the doctor has all their information.
Apparently my parents don’t trust me although I’ve never, to my knowledge, betrayed their trust.
The last time I did get information as to how my mom is doing it was because my dad allowed my daughter to attend the appointment.
She told me my dad cussed the doctor out and was demanding that my mom be taken off the antipsychotic she’d been on for months. Dad had decided the drug is what caused my mom to take a fall and hit her head (reason for doctor visit).
My mom sat there smirking at my dad as he had his tantrum!
Anyway dad screamed at my daughter that “he’s in charge of my mother now and we can butt out”.
I hope you have better luck than I’ve had. My father has been impossible to deal with since I can remember.
I suspect dad has dementia too, being 89 years old. I worry about how he’s handling the money. They saved enough to cover both of them, I NEVER considered hands on care at their home. I know them and I know me and it wouldn’t work.
As to the suggestion to ask him how he thinks the care is going, we have talked about it and he is not happy with the speed of answers or follow ups, yet won't heed my suggestions to do more advocating/questioning/following up himself. It's not rationale given how he feels about the some treatment aspects. For 2 weeks he could have called the pshych doctor to see what was discussed with the neurologist about adjusting meds, but has not and can not tell me a real reason why not. I have gently said that she is suffering so and by calling the doctor we may have lessened the suffering earlier.
I am not a medical profession so I dont know if the regression in the depression and memory loss / confusion are med related or some other condition, as in dementia. But I do know she was doing so much better when her meds were initially adjusted and now she is almost back to square one. The point is, the doctor should be called when there is a noticeable decline.
In any case, they have an appointment tomorrow and if I don't hear something that makes sense, I will be contacting the PCP, and will probably do so either way. That way he will be up to speed when Mom sees him next week.
Thanks for letting me get this all out and thanks for the thoughtful replies, which I will surely use soon. You are all so helpful!
Explain the you will be taking notes so that you will have a health diary for her as then you or he can look back at what each appointment was about - bring a note book & do just that - ask him if he would like you to do the same for him either sooner or later - explain that you are wanting to do the best for them & you feel this is one way you feel that you can stay on top of things
Try to get a 1/2 size loose leaf binder so that you only need to bring a few pages to each appointment then they can be sort however you feel best eg. time line or by dr. or by ailment
My brother's daughter, who had complete control over Mom and Dad until I arrived in town, has struggled to regain that control. She even tried to have me- their only daughter and only biological child- kicked out of the hospital I'd taken Mom to when she had a stroke. (she made up a story about me assaulting her in the hallway, which was stupid since they have cameras in the halls.) At the time, I didn't even know I was healthcare POA, which would have helped me if I'd known.
As for your husband's advice, I have made appt's for my parents (before I knew I had POA) and taken them- since neither can drive- and then just walked in the exam room with them. No one questioned it or stopped me. However, my parents were, and are, very willing to have me along. It doesn't sound like that's true with your parents, so you may have to wait until you're approved on a broader scale with POA.
in reading your request for advice, I had mixed feelings about how to respond. I'm assuming there is a lot you're not able to share here. But having said that, when you mention "I feel my elderly dad is not equipped, including his memory,"- has he been diagnosed with dementia?
"her meds need adjusting based on her condition worsening and new side effects."
You didn't say whether or not you are a medical professional, and is it a certainty that it's the meds and not a progression of her condition?
I understand your concern, having been a caregiver to my mom and a sibling in over the past 15 years. And I had to address some of the same issues you are speaking to here. However, instead of being seen as helpful and concerned, I found out from other relatives there was a feeling of resentment and I was seen as a "buttinsky" which was a shock to me since my only concern was for my mom and brother's best health.
Also, if your mom and dad have been married a long time, could it be you are making him feel inadequate to take care of her as he has done in the past?
And today's HIPPA laws require medical professionals to limited what they will share about their patients beyond designated individuals.
I understand you are concerned about your mom and want only the best for her as I'm sure your dad does also. But, perhaps, it might be a better approach (you know how sensitive some men can be about their role - she's your mom-but she's also his wife!), to ask his opinion how her treatment is going (of course, this might be a problem at first based on what has already transpired) etc
But, my suggestion would be to let him know you are there for him and ready to fully support him in any way he needs to get your mom back to good health.
Just my thoughts.
If you have siblings, look to your State Laws.
In my home State, if the person in question cannot legally/mentally understand what they are signing regarding Medical POA, then all siblings must be notified, discuss who should be the 1st ane 2nd. Sign/notarized statements to the fact of agreement for Medical POA and that becomes the legal argument for you to have what cannot be signed.
NOT EVERY STATE IS LIKE THIS LAW WISE.
This is the route I had to take with my siblings regarding our Mother.
Would it help to add an incentive?
"Dad, I'm planning to go to Mom's next appointment, and after the appointment, let's go for ice cream (or bowl of soup)" or other short, doable activity he would like.
I recall when my grandfather was in the hospital back in 1974, and the physician saw something in the blood work that appeared suspicious (but fortunately turned out not to indicate a problem). My grandmother had talked with the physician, and she said there were some kinds of "gadgets" in the blood but she didn't recall or understand what they were. It occurred to her that it would have been helpful if I had been there because, as she put it, I had "studied biology".
My dad got the flu and could not go to my mom's appointment...he sent me with a question for doctor. The answer came back, if your dad can't give the medication in the manner it was prescribed, he can no longer manage your mom's meds! Turns out he had been playing doctor with meds and not getting her some care because it was too hard to get her to the appointments. As a result, I had to take over and they finally agreed to move to AL so mom's meds can be managed by the staff. He still watches them like a hawk, but at least there are multiple people involved and one less thing for him to have to deal with.
I like your suggested approach and I also appreciate your reminder to keep it non emotional! Thanks much.
Here are examples of mother's worsening conditions:
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Here are what I think are side effects of her medicine:
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These are other concerns I have about her health:
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2) I'm afraid Dad isn't able to remember things to report to you or to remember what you say to them. I would like to accompany them to appointments.
Make it as easy as possible to read at a glance. Keep it short, but specific enough to give the doctor a picture of what is going on. Include your phone number.
Are you healthcare proxy (medical POA) for your mother?