I will be 60 years old in August 2026. I have been my mom's sole family caregiver for 17 years and 4 months, since she came home from rehabs after a horrific car accident. Mom will now be 88 this month. Mom is not sick but mom is sick all the time. Mom has been in constant pain since the accident. We have managed pretty good up to now. But now I am started to get worried. We go to doctors a lot, and recently just had 3 ER visits in one month for a gastro infection, a laceration on her leg, and a fall. Lumpectomny in December 2025 and Bone Cement in L3 in April 2025. Abdominal pains persist. Headaches as usual which mom has had even since I can remember, even when I was a kid. She is dead tired all the time, and I have questions about diet and nutrition. Doctors do not talk to me about caring for her. This is what I need real help with maybe. While support by talking to other caregivers is really not what I am looking for. No doctor is truly concerned. But why should they be? Doctors see an never ending line of patients, all of them, Primary Care, Cardiologist, Orthopedic, Gynecologist, Urologist, Gastroenterologist, Podiatrist, Oncologist, Wound Care, and others. In 2025 mom had over 50 medical encounters including doctors, radiology, and lab work. 2026 is shaping up to be over 50 again. 2009-2024 varied from 25-40 per years. I have everything documented and EOB's. No we have visiting nurse coming 2-3 days a week because of mom's recent fall and the wound which occurred prior to the fall. But that will end. Physical and Occupational therapists are supposed to start coming to the house in a week or 2. Personally I have nothing, no money, and very little possessions. I am on SNAP and General Assistance Grant , which is really a no interest loan doled out every month, I use to help pay to run the house. I have to, no choice, try to care for my mom til she dies. Watch her die. But she is not sick, but sick constantly. It is hard to understand I guess. I would not believe it if I were not actually living in it. But as the sole family caregiver, how can I know for sure if I am doing everything I can? If I go to my doctor, can I ask about caring for my mom? Her doctors only treat her, and only for whatever she goes for that appointment. I need a more big picture approach , but from a doctor to me.
Your best bet is to have a psychologist examine mother. To see what's at the root of all her trips to the doctor. And then this psychologist can help you to understand that you've been doing more than enough to care for her all these years. That you cannot help a person who never feels good TO feel good again. It's not your job. It's only your job to ensure she's looked after, fed, toileted, bathed etc. No one person can do any more than that.
If mother is addicted to pain medication, by chance, then that's a horse of another color. No doctors want to deal with such matters and keep writing prescriptions for opioids. Your best bet, if this is the case, is to find mother a pain management clinic to go to.
Best of luck to you.
https://www.agingcare.com/questions/am-i-the-only-family-caregiver-afraid-the-loved-one-will-will-die-498971.htm
From reading your post it sounds exhausting.
The wound care RN should be able to talk to you a bit when she is at the house on her site visits. Ask her/him some big picture questions.
Also, if your Mom still has an open wound then the wound care RN visits can be extended by Mom's PCP. Ask the wound care RN about extending the visits.
Also, ask the wound care RN if your Mom has access to a social worker to come to the house. If so, she can request Mom's PCP to send a social worker for a site visit. The social worker and see if you qualify for more services like free home care.
YOU MUST TAKE CARE OF YOURSELF FIRST. Yes, it is okay to make an appointment with your PCP to tell your PCP that you are overwhelmed with Mom's care. I had a great conversation with my PCP about caregiving for Mom.
Consider getting some therapy for you. This really helped me. Your PCP can refer.
It is okay to stretch out appointments on non critical things. i.e. if you have quarterly appointments with some specialists stretch them from every 3 months to 5 or 6 months.
With every specialist ask about the option of remote appointments. We did this with Mom's PCP the last 3-4 years of her life. It is like face timing the doctor from the house.
Also, does Mom even need the Gynecologist and Urologist appointments?
Much of this can be handled by the PCP. On your next PCP appointment with Mom ask the PCP which specialists can be discontinued and handled by the PCP. i.e. the PCP can treat UTI's and the PCP can prescribe estrogen creme if needed for "down there." etc. Understand a lot of women are not routinely going to Gynecologist and Urologist appointments. Does Mom need the ongoing orthopedic appointments? Since she has had the bone cement? Is this something the PCP can oversee?
I would ask Mom's PCP which specialists can be discontinued. Tell the PCP it is too much for Mom and you to go to the endless appointments. PCP can oversee some of this stuff and rerefer Mom if something new comes up.
I live in Florida and doctors here are known nationally for putting patients through an endless cycle of appointments. Sometimes you have to break free. I had one specialist tell me he had to refer me to the other specialist so that the other specialist could make his boat payments.
Your question seems to be how do you find a doctor who will advise you on the care of your mom beyond their specific speciality. Is that correct? Specifically how to make her well so she won’t need the 50 medical events ongoing? You and she are a bit burned out on the constant issues? Is that it?
This is one of the problems we all face, not just as caregivers, but also as individuals. It is not unique to your mom or to you.
Several years ago I became interested in Functional Medicine. These are doctors who search for the root cause of illness and don’t limit their care to treating the symptoms. Unfortunately they threaten the core medical establishment and for the most part don’t take medical insurance. There are a few who do for a portion of their practice. This is one source for finding a doc who will treat the whole person.
They are proactive, not just reactive.
Slowly but surely the disjointed approach of treating each portion of the body as if it didn’t affect the other parts is being addressed by the American health establishment. Even in psychiatry it is becoming more apparent that how we take care of our gut is how we are also taking care of our brain. There are now even Functionsl Psychiatrist.
The boring truth is good health all begins with diet, exercise and proper sleep. Add hydration and eliminate processed foods and everyone’s life improves.
Most of the specialist that start piling up as we age is due to the natural effects of how we have treated our bodies over the years. They simply wear out if not cared for. Of course there are exceptions. Health issues we have genetically or accidents such as your mom experienced can cause problems the right amount of kale can’t cure but doesn’t eliminate the need to always return To the basics of good health practices.
Another specialist you might try is a geriatrician. They treat older adults and often have social workers in their practice. They do take insurance. The one I have worked with was associated with a university and she was a great resource in managing my loved one’s care. She spoke to me w/o my LO being present but my LO had dementia. Your mom at 88 might find such a primary a great fit.
As you have discovered the mainstream primary doctors don’t have the answers you are looking for. That’s not what they are trained for. They are bright and dedicated and steeped in the American medical practices that don’t work beyond a certain point. They aren’t much interested nor encouraged to be in the areas outside their arena. There is a shortage of medical care. They are challenged to see a large number of patients. They expect blind faith. You go in, get seen, get a drug and go try it in a perfect world for them. Not so much for us.
Another resource for more face time is a doc with a concierge's service. For an additional fee they will see a patient 24/7, at least theoretically. They have a significantly smaller number of patients.
While these are choices who might have more time to discuss the big picture who I would really suggest for you is a therapist.
At 60 you are figuring out that mom will pass one day, that her care needs are increasing and you need to have a plan for what you will do? While your help has felt necessary and with purpose it hasn't left you prepared for a future on your own when you no longer have mom’s resources to help you out.
An elder lawyer might be beneficial if you haven’t made sure mom’s affairs are in order and researched what benefits are available to pay for her care should you be unable to.
Additionally, you might find AI helpful. Not perfect, but very helpful.
Wishing you all the best as you sort through your options.
https://www.agingcare.com/local/area-agency-on-aging