Doctor appointments

helpingdaughter26

Hi all,

My mom (69) was recently diagnosed with Alzheimer's and I (28) am her caregiver. It's difficult being so young and trying to figure some things out on my own. I don't have any experience and no one in my family does either. I am learning as I go. Since my mom has started her diagnosis journey, she finds every little thing wrong medically and wants to go to the doctor. She has been to the doctors every month since January for things that have already been discussed with the doctor (ex: IBS flare ups, headaches, sinus problems). At our last appointment in May, her primary care doctor spent 45 minutes with us just trying to explain that these are issues that have been discussed multiple times and that she needs to follow up.

She has an appointment today and we were discussing it last night. I told her that there really was no point of going to the primary care doctor today, rather follow up with the specialists that the PCP recommended. She got rather annoyed and feels that her PCP is the end all be all. She says she'll write a list of things to do but then not remember the conversations again and again.

My question for you - how do you go out about this? I am so nervous that her PCP will discharge her or something because she comes in all the time with the same problems and no follow up. She will not allow me to call other doctors or make lists of things she needs to do. I'm at a loss. She believes she can still do things since she is in the early stages of everything.

Any advice is appreciated it.

M1

Welcome to the forum. Her anxiety about her health could be romanizing, which means expressing generalized anxiety as physical symptoms. She may be more advanced in her dementia than you think. I would ask the doctor about prescribing something for anxiety-the SSRI drugs Celexa and Lexapro are thought to be the most effective ones in dementia (Zoloft/sertraline is also frequently used). I would also seek a referral to a geriatric psychiatrist.

How much to pursue other specialty evaluations for a loved one with dementia is much less clear. A lot of us tend to limit and/or drop specialists, especially as the disease progresses. Your post kind of implies that this PCP is one who refers a lot of things out. If you get the sense that he’s not comfortable treating dementia, I’d look for someone else.

H1235

Welcome! This is a great place to learn and get ideas on how to handle all those tricky things that come up. There is a group for new members that has a lot of great resources you may find helpful. Anosognosia is very common. It’s the inability of a pwd to see their limitations or symptoms. It is the worst! Not being willing to accept help is so frustrating. Her safety needs to be your guide in how to handle these difficult issues. There may be times you have to step in a do what is best for her even if she gets upset about it. Does she still handle making the appointments? Could you send or give her pcp a note explaining your concerns and ask if he really thinks all these appointments are necessary? I find a healthcare portal works great, but I’m a bit older and my mom doesn’t use the computer. So it was easy for me to set it up without her being involved. If you are making appointments, can you just tell her it’s going to be two or three months before they can get her in. This is a therapeutic fib. It’s hard to get used to not being upfront and honest with your parent, I get it, but it may save you a lot of headaches when it’s necessary. I know this was not a question, but legal paperwork is very important. You will want a DPOA. I hope there is something useful for you here.

harshedbuzz

@helpingdaughter26

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

One thing any of us who are caregivers to a parent has to come to grips with is the change in the power dynamic of the relationship that starts to feel as though you're becoming the parent to her child. This is awkward for all of us, but I can see where it would be especially uncomfortable when the parent is quite elderly and the child is relatively new to adulthood.

She sounds beyond managing this aspect of her life, so you'll need to become more assertive in making it happen. Perhaps not in-her-face assertive, although being more authoritative with my difficult dad seemed to calm him down, but certainly steering the ship.

I agree with M1 that this behavior reeks of anxiety. Anxiety can cause a somatic reaction to minor, or even imagined, discomfort. It can sometimes be attention-seeking behavior; maybe she likes the attention from this doctor and his staff. An SSRI could be added to tamp down her anxiety which should improve things.

My mom's doc is big on the referrals to specialists but she's medically complex and most are reasonable IMO. When dad was alive and had dementia, we and he took a different approach given that Alzheimer's is a terminal condition and dialed back on specialists except the pulmo for his COPD. That said, if the IBS and sinus issues are long-standing and impacting quality of life, you might want to make the appointments behind her back and spring them on her at the last minute. You could tell her she's seeing PCP and morning of say he's unavailable and she's seeing this other doc "covering" for him. If she doesn't need to be seen, then make up a story about the appointment being rescheduled.

HB