I messaged my husband’s PCP and said I am feeling overwhelmed trying to deal with all the different medical professionals for so many of my husband's chronic conditions. He is in a wheelchair and shows mild cognitive decline. We actively see specialists for cardiac, diabetes, glaucoma, retina damage, general practitioner, infectious disease, orthopedic, pain management, podiatrist, psychiatric, pulmonary, skin cancer, sleep disorder, urology, and wound care. I told his PCP it's been suggested that I should ask if we might benefit from palliative care. He replied that some of those on my list are stable (NOT!) so things should be settling down.
A few days later, he told me that the palliative care team says hubby doesn’t qualify because he’s not terminal, and instead we should connect with a gerontologist. Huh? While that might be helpful (oh good, another specialist in another city), his reply seems to misunderstand palliative care.
I replied that I’m not looking at hospice care for a terminal illness, but at palliative care, which I understood is specifically for those dealing with chronic conditions. I sent a link to an article (from our own medical group!) that explains who should qualify. We fit the mold for sure. As I told him, I’m not sure what they can do to support us but I’m drowning and I need help.
What should I press for, if anything, in these circumstances?
I think a good gerontologist would be ideal for hubby. And would be able to manage many of his issues without specialists. This would cut down somewhat, at least, on visits. However, with diabetes a factor, there are going to be many systemic problems and many many medical issues. That's the nature of the disease as it affects almost every system in the body.
Your husband should be in the care of a gerontologist-- ask for referral to a good one, and explain that the numbers of doctors now need to be cut down as much as possible. He will take the TIME (and that's one of the best things in this practice) to work this out with you and with hubby. Together you will all work out a plan, and you will be able to see what can benefit from in home care and followup and what requires office visits. Many things these days are a ZOOM call, and it would be ideal in your circumstances.
There is no path to "easy" here. But some hope of a path to "easiER". Or at least that's my hope. You have to be frustrated and worn to a frazzle.
Best of luck to you.
Palliative care only has a nurse coming to your house once a month to check on your husband and sadly that's about it. I don't believe that's going to help you much do you?
Instead if you are to the point of drowning with your husbands care it may be time to look into having him placed in the appropriate facility so you can get back to just being his loving wife and advocate and not his burned out and drowning wife.
What you are saying is not totally true, especially not knowing all the details of the OP nor what is offered in her local area. My husband is in Palliative Care and a nurse has never come (or needed) to our house from the service we are using now. That service may be there should we need it down the road.
But I think the important thing for our OP to consider, and this is something a palliative care coordinator dr. could do, is to help you all decide on how much of the current treatment is really needed to preserve quality of life. How much testing, if there's no realistic treatment, given concomitant conditions? Are all the medications needed? Wishing you luck finding someone who can help you with this.
If it’s the latter, you can do your own ‘palliative care’ assessment (perhaps with help from the GP), and work out which things on this list are really a waste of time and energy for you both. Comfort care may be the best option, and the kindest for both of you. You may have more common sense than most of the specialists on the list, who are unlikely to tell you to stop wasting your time, energy and money.
You and your husband are boss of this - you don't need the specialists' permission to stop, or an assessment from a medico who has only just met you.
You are absolutely correct that palliative care is for people with complex or chronic conditions that are not going to improve and two major goals are to manage symptoms and decrease medical appointments. Your PCP clearly doesn’t understand it because you certainly do not have to be terminally ill. A palliative care professional will come and do an assessment and then contact Medicare to assess qualification. You don’t need to have a referral for a hospice evaluation, but I’m not sure about palliative care(fortunately our PCP was very supportive). I would call a provider in your area to ask. I hope your husband qualifies and that you find it as helpful as I did..
My husband's doctor is a gerontologist. I chose that specialty when husband was first diagnosed believing that she would guide us better than a GP as the disease(s) progress. Not so! She uses the standard decision tree of any medical professional except she will not prescribe for sundowning, pain, anxiety out of concern for fall risk. If you go that route, please ask some very specific questions about their philosophy of care.
I cannot imagine why your husband would not qualify. From my research, it may have more to do with a limited supply of providers rather than he is not qualified. Terminal is not a requirement. Physicians in a general practice seem to either 1) not understand palliative care thinking it is the same as hospice, or 2) are biased for a variety of reasons against comfort care. OMG! I literally pleaded with a multitude of people for help in putting together a team to meet my husband's needs, mostly to no avail.
My husband lives in the best memory support in our area and they have disappointed me terribly. Although they promised the world, including personal attention, when I was comparing different places, they now often exclaim that X is one-on-one care that they cannot provide.
I am also hiring a geriatic case manager to be an intermediary between me and the facility because I am fed up with being talked to like I am the one with dementia, very patronizing. Also, I hope that she will be more informed about resources and solutions available as things arise all of which I expected from a gerontologist.
I cannot imagine how frustrated and burned out you must feel. Your husband's medical picture sounds even more complex than my husband's. I have not read the other replies to your question yet but I plan to follow this thread. Such an important topic for dementia patients and their families! Good luck to you on this journey. I hope you get the care for your husband and support that you both deserve.
if i copied that wrong look up pallative care and then find cleveland clinic.
Take the doctor's suggestion and find a gerontologist.
A gerontologist can become his PCP, and may be able to recommend palliative care.
Second - just stop taking him to all those specialist! You are in charge, well, your husband is, of his own health management!
Choose which health professionals will benefit him and his quality of life and do that only! Just because his doctor recommends he go to a cardiologist doesn't mean he has to go!
He should however, continue to seek help from any specialist who can alleviate pain and help him live as comfortably as possible.
My husband is chronically disabled as a result of a massive stroke 10 years ago. He is only 63 now, and is not anywhere near dying soon.
During these last 10 years, I have repeatedly asked his doctors, "does he still need this medication?" and "what is it for?". As a result, I have managed to wean him off of many unnecessary medications. And, I don't take him to the eye doctor, or dentist, or cardiologist.
He has a PCP, a nurse practitioner, who comes to the house once a month for palliative care.
Your husband should guide his own health path. If he feels all these visits to specialists are unnecessary, don't go.
Everyone is different. My 84 yr old dad, for instance, expects modern medicine to help him live forever! So, he goes to ALL the specialists, AKS for referrals to specialty testing and treatments! And seeks out alternative therapies!
It is your choice how to live. Seek the treatments and help which fit your life. And find a doctor who doesn't intimidate you, who listens to you and understand your needs!
you said "just stop taking him to all those specialist!"
I do agree with your overall view of stepping back to evaluate the benefit of continuing with each one but only with a discussion with that specialist. Perhaps OP may be able to cut out one or two or possibly how often they go. However, just stopping with a specialist can be very dangerous for the patient purely based on too many appointments. So many of the specialists she mentioned are necessary to minimize risks of diagnoses becoming emergencies.
Dentist... lack of dental care can lead or contribute to heart issues, especially if they are already a cardiac patient.
Optometrist/Ophthalmologist... he already has glaucoma and retina damage, without regular monitoring he could go blind.
Cardiologist... if blood pressure is an issue, it needs regular monitoring for the right dosage of medication, etc.
Podiatrist... with diabetes, he needs regular care to prevent losing a foot.
Other... there are so many issues that need regular monitoring to prevent an even higher level of stress for the patient and the caregiver!
No one should ever simply just stop going to a specialist for less stress without first understanding the consequences.
A good Palliative care team is suppose to help navigate the journey.
Medical care is a big industry and they want you on ALL the hamster wheels you can manage, because they are usually getting paid pretty dang good from Medicare or other good insurance, so they don't want to give up appointments for their specialists.
It is up to us to advocate for ourselves, doctors nowadays just follow a process without much thought to the patient. Unfortunately.
I searched for a good Palliative care provider for my husband and even tried Palliative services promoted by a Hospice company. That company tried to push us into Hospice which was in 2019 and we still don't need Hospice. We are fortunate that I found the one we through our Major Hospital system. They have been such a blessing in that I I have someone to call when things don't make sense. They were there to help me decide between Hospice or Surgery for an incarcerated hernia... we chose surgery and that was October 2023. They are a one stop shop for helping me understand pros and cons of decisions... am never pushed one way or the other, just informed and supported with our wishes. Each specialist seems to feel it is their job to use their expertise to keep that one body system functioning! A good Palliative care provider helps you focus on what is best for the whole body. Our provider spends part of the time discussing what I need too and I feel supported.
You may want to consider seeking out Palliative care providers in your area and getting info directly from them as to their policies. I found there is a wide range of understanding of what Palliative means and be sure you need a referral. Once you have chosen one, take that info to your PCP. You may even be able to get a referral from one of your specialists that you feel comfortable discussing it with. Just know if your needs aren't met, you have every right to change.
Years ago when it began, there was so much confusion as to what Hospice is and who it is for. I feel there still is in some circles but fortunately it is better understood an used more appropriately most of the time. Even though Palliative care has been around for a while, it still is treated much like Hospice care was in the beginning. You may want to print the articles you want a provider to consider so hopefully if they don't read it right away it will sit on their desk and catch their attention later. I have done that and even had a provider tell me they had not read it yet but planned to do so. Just make sure your articles are from reputable sources especially like NIH, University Medical Centers, etc. Many providers still need a lot of updates in their info and we are the ones to push them to expand their thinking.