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LivingSouth Asked July 2016

Anyone on here used palliative care and if it helped cut down the number of doctor visits?

I am so fed up with WAITING on all of these doctor offices to call me back. Parents have multiple problems, so it's not unusual for us to have at least two visits per week. Does Palliative Care deal with the doctors, or does the caregiver still deal with them? I have sat around for two days trying to deal with their offices and they often don't even call you back when they say they will. It takes 25 minutes to just get one office on the phone.
Already worn out from dealing with home repairs, my own health problems and this aggravation is kind of the last straw. I know that PC only comes once a month, so I am wondering if it would make any difference in getting them to come?

Sunnygirl1 Jul 2016
And since it's for pain, maybe your mom would be willing to take it more than other types of meds.

Sunnygirl1 Jul 2016
Livingsouth, since your mom has a lot of pain issues with her bones/joint and anxiety, I'd discuss a med that treats all of that. Has she ever taken Cybmbalta? My cousin, who was disabled with arthritis, before she got dementia, was placed on that medication is it was like a miracle for her. It really worked for her on all of her needs. Of course, all people are different, but I'd inquire. It's for pain, depression and anxiety. There are certainly other options as well.

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LoriMb Jul 2016
I too felt incredible frustration with taking my 95 year old dad to the doctor every 3 months. I started using a convenient urgent care instead and even better now have a group called mobile physicians that comes to the house. Lots of paperwork to fill out to get it but well worth it.

Llamalover47 Jul 2016
LivingSouth: Understand this, that palliative care means that it is a multidisciplinary approach to specialized medical CARE for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, physical stress, and mental stress of a serious illness-whatever the diagnosis.

Nojoy3 Jul 2016
For us it took changing doctors to get what my brother and I felt was appropriate care for our Mom age 91 with advanced dementia. The first doctor she had wanted to see her every three months and would always do labs and referrals. This care might have been appropriate care for other 90 year olds without a terminal illness i.e. dementia but it was not for our Mom. We knew Mom was not going to get well no matter how many tests or referrals she had. All we wanted for Mom was to keep her comfortable and as pain free as possible. Having Healthcare Power of Attorney I contacted another doctor explaining Mom's condition and our goal for her health care. He agreed after reviewing her medical records that it was very reasonable and took over her care. Since then life has been much easier. She is on comfort care only. No need for labs or referrals anymore. There was no need for a special "palliative care" group, this was all arranged with just a kind and knowledgeable Family Practice doctor. When it comes time for Mom to be put on hospice care he will arrange that for us.
I would suggest that you determine based on your parents Advanced Directive what you as their healthcare representative feel is appropriate care. Once you decide that, make an appointment to talk with their doctor without your folks being present and explain to him what your care plan goals are. If your goals are reasonable and he doesn't agree then it's time to start looking for another doc. Not all docs are good at end of life care.
There is one thing to understand, if you do not have legal Healthcare Power of Attorney or if your folks have not signed a release of information the doctor and his staff may not be able to discuss your parents with you. That's the law. So, you'll want to be sure you have one of those. It's also important to share your parents Advanced Directive with the doctor so he'll know what their wishes are.
Another thing to remember is that your parents have the right to refuse treatment. That includes lab tests, referrals etc. It's important to remember that in America most healthcare is a business with a goal to make money. Sometimes, we as caring family members have to step in and just say "NO" it's not in my loved one's best interest.

JoAnn29 Jul 2016
When I took over my Moms bills, I found she was going to her PCP every two months. At that point,she was only taking cholesterol meds. She could not give me a reason why. I went with her the next visit and he asked her why she was there and I said because u told her to be here. See its a Medicare thing. They paid for all those visits. A nurse in the office, who is a friend, asked why Mom was there again. She told me she didn't need to be there unless time to renew her meds or for a real medical thing. In NJ, you need to see a physician every six months to renew perscriptions and even then it depends on the med. I would question why the need to go that much. If its just to check vitals, maybe they could have a visiting nurse agency come to u house saying ur parents are primarily homebound. (Which they r if ur the transportation). I would ask if they really need to see certain doctors. Elderly parents don't ask these questions. I'm going to ask a doctor if we can go for a yr instead of every six months. Same with meds. Mom is always put on additinal meds when in the hospital. One was for rapid heartrate from thyroid. Once the thyroid was under controll, she didn't need it but was still taking 2 pills a day. I questioned it and the Dr. weaned her off. If I had said nothing, she would still be on it. So, I would go over her meds.

BnnK54 Jul 2016
If Medicare will pay for a quarterly 'well' visit that's exactly what the Dr will suggest. So much of testing and scheduling is just because Medicare pays for it no questions asked. It would be helpful if another family member went along to the Dr's appointment, heard what was actually said, and then make a determination of necessary or just a money grab.

LivingSouth Jul 2016
I agree that something for her nerves might help. She has taken Buspirone in the past, so I may have to start her back on that. Otherwise, I think that both of them are just going to have to go into a nursing home because I am exhausted.

cwillie Jul 2016
My mom complains about pain more when she is stressed or agitated, since she started on mirtazapine to help her sleep at night she seldom asks for more pain relief.

LivingSouth Jul 2016
My mother has seen a rheumatologist, and all the doctors she sees will only give her the Tramadol. They said that she couldn't take Celebrex because of the blood thinner. She also sees a foot doctor AND has also seen an orthopedic doctor (who could only give her a cream with neurontin in it.) I suppose I could take her back to the Rheum. and see if he could give her an injection.... She does have dementia, and my father has memory problems but no 'crazy talk' so far.

I swear that I have bought about two hundred dollars worth of various pain cream, nerve cream, supplements, anything that I see that might help. She thinks that I am supposed to fix all of this.
My dad is taking a homeopathic anxiety medicine that does seem to help.

Both will not take anything unless I put it out, or stand there while they take it.

Everyone else in my family is in denial about how bad it is. They seem to think that if they just buy them some ice cream or cookies, that it will make everything better. Right.

Sunnygirl1 Jul 2016
Livingsouth, you might check with the American Cancer Society. I think I read on their site that they do not recommend cancer screenings for people who have a terminal illness like dementia. Do your parents have dementia?

Based on what you have described with their complaints, I might attempt to treat their pain by focusising on a Pain Specialist and/or a Geriatric Psychiatrist. Have they always had so many complaints of pain and wanting to see doctors? If so, they may have need for a mental health evaluation. They may need info from you to do this to ensure the correct info is reported to the evaluator. I know it's another doctor, but if he can offer a solution, maybe they can settle down and stop some of the other frequent visits.

Are they being treated for anxiety? I'd discuss that too and see if it might help.

freqflyer Jul 2016
Babalou, oh about those mammograms, good heavens my late Mom was having them done every year up until she was 97... never made any sense as even if the doctors found something they couldn't do anything at her age... but she wanted the reassurance as her sister died of breast cancer back 30 some years ago, and she didn't want that happening to her.

If a doctor said I didn't need mammograms any more, I'd be doing a happy dance.

LivingSouth Jul 2016
Unfortunately my small town does not have geriatric doctors. That's exactly what they need. I am always running around, mowing the yard, shopping, calling this place or the other about their billing, etc. I can't sit around all day while I wait on the doctors office to call, or not call, me back.
Today my mother started in again about being in pain and wanting to see a doctor. They only give her Tramadol and it makes her even more crazy, but that is the only thing she can take with other prescriptions. She says that 'no one cares that she is in pain.' And she would drive if she could... I hear this everyday.
Regardless, she wants another solution. My father has went to the same doctor three times in one month wanting a different diagnosis ( or maybe he just forgot that he had already been there) Now my father is sick, also. He just saw his primary doctor the other day (and he always tells him that he is 'fine', so I have to shake my head - no!
My siblings have taken them to some appointments, and I think they are getting irritated.
At any given time I am dealing with about fifteen things that I am trying to do, and dealing with
the doctors on top of all that is driving me crazy. I never get time to do anything for myself.
And I never get gratitude, just accusations that I am not 'fixing' everything.

BarbBrooklyn Jul 2016
LivingSouth, do you have "call waiting" on your phone?

BarbBrooklyn Jul 2016
My mother gave up driving when she was in her mid 80s, meaning that she needed to be gotten to vaious doctors....the internist, the cadio guy, the ent, the mamogram, the dermatologist. I did this for about 2 years.

Mom ended up in the hospital and then independent living ( it didn6happen overnight). Once in IL, the lovely geriatrics guy there took over mom's care. He took her off most of her meds except for bp stuff, and had her see a geriatric psychiatrist for her anxiety.

In my opinion, a good geriatrics doc is what someone over, say, 85, needs. Less is more in terms of meds and tests. That might be an alternative to official palliative care.

LivingSouth Jul 2016
They currently have - let's see - seven doctors in all. There are two that they do not see regularly. They are both going to a cardiologist who is affiliated with a hospital doctors group. He has sent them both to the hospital for ultrasounds, circulation studies, stress test, etc. He has also wanted to put my dad on yet another statin ( we did not get it filled since he already is having memory problems and leg weakness)

My mother just got a CT scan because they saw something on her lung. The test said that she had a possible aneurism on her spleen ( not sure what this means) She had me take her to an ENT for a lump on her neck and the doctor told her that she was 'supposed to have a gland there on your neck.'

She is also having pain problems and constantly wants to go to this or that doctor. There have been weeks when they had four appointments in that week.

The local hospice is pushing palliative care for anyone with a chronic condition, so I wondered if getting them done to just the family doctor though the program would help?
Yesterday my whole day was thrown away because I was waiting on a call and I couldn't call anyone because I had to keep the line open. They finally called about 4 pm.

Windyridge Jul 2016
Flyer makes an important point. She couldn't get her folks to doc appointments for 6 months and somehow they survived. About 80% of my elderly parents doc appts are unnecessary. I used to freak when they would forget and miss one here and there but I don't anymore.

To Living South, I don't know the details with your folks but the two remedies that come to my mind are:
Just cut out the unnessary appointments.

Get them into care where they have visiting docs on staff.

I know this is all easier said than done but the hospitals and docs usually have no clue and could care less what all these check up and monitoring appts are like for the elders and caregivers. It's like a professional arrogance.

freqflyer Jul 2016
Rainmom, my Mom was similar to your Mom.... for her I believe she felt at being in her late 90's that she would still be around whenever the doctor would say "see you in 3 months" "6 months" or "next year". And her doctors learned early on not to say to her that her condition was due to aging... my Mom didn't want to hear that she was getting older.

Rainmom Jul 2016
I'm my fathers case it was his PCP that recommended palliative care. I think he knew my father wasn't going to get better and taking my dad to dr appointments was very hard on him. I recall they came more than once a month but maybe that was for the initial set up and my dads condition as he was moved onto hospice in a month or so. While my dad wasn't one to run to the dr for every little thing- yes, the original intent was to cut back on trying to find a "cure" when there wasn't one. My mother on the other hand treated going to the dr like a hobby- if there wasn't something genuinely wrong she would invent something. This past February I had her assessed for hospice partly because it was too hard on her - and everyone else to run her to the dr every week. The odd thing is, when hospice took her off the boat load of medications she was on, nothing really happened - and it's been five months. Yes, she is having a "slow, steady decline" but the hospice people do not believe it is due to her being taken off her specific medications - that what is occurring would have happened regardless. As previously suggested maybe taking a hard look at each various dr appointment and assess how vital it is continue.

cwillie Jul 2016
Understand this, the point of palliative care, just like hospice, is that you have made the decision that you no longer with to treat the disease, only manage symptoms to keep the patient comfortable. What are all of these doctors appointments for? There shouldn't be a need to formally enter a palliative care program in order to cut down on unnecessary medical interventions, just say no. It helps if your primary physician is on board with this, a lot of the things you are probably running around for can be monitored by them.

freqflyer Jul 2016
I know for myself, if I had to sit in yet one more doctor's waiting room, I was going to scream !!! Personally, I think our elder parent(s) are going to the doctor too much. I learned nothing serious happened to my own parents when I was down for the count with a broken shoulder and couldn't drive them for 6 months... they survived even with all the medical issues that tend to happen to those in their late 80's and into their 90's.

My parents primary doctor wanted to see both of them every 3 months... all she did was check their heart, pulse, ears, etc. and asked how they felt..... it was like an instant replay of their visit 3 months prior.

I thought palliative care was called in just before hospice was called. I would think the caregiver would still be taking their parent(s) to the doctors.

It was times like this that I wished my parents would have moved to Independent Living where there was a doctor's office on site, to which they could go every week if they wished.

It got to a point where I didn't visit my own doctors because I was so sick of waiting rooms, plus I didn't have any more vacation days or sick days to use from work :(

Sunnygirl1 Jul 2016
Dealing with medical offices can be frustrating. I'm not sure if having Palliative Care will help with that. It could cut down on the number of visits they will have. What type of appointments are your parents having twice per week?

I found that a small practice where they have no PA's is better. I found that a place with lots of doctors and PAs results in too many patients, over booking, strained support staff, and never seeing a doctor when you're sick. Only when you have an appointment for months do you see the doctor. If you are sick and go in, it's just a PA. I don't like that.

I can just recount my experience. Most of my loved one's visits are to check her diabetes, which is for comfort care. If her blood sugars are too high or low she may suffer physically, so we have to keep check on that. And also she's treated for fractures. If not for those things, I think her visits would be down.

I discussed it with her doctor in detail, so we are on the same page. We get her immunizations, treat pain, and opt for non-invasive courses of action.

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