22 Comments
User's avatar
Leslie Fuquinay Miller's avatar

Did the doctor tell you that a steep cognitive decline was a sign and result of a urinary tract infection? In the elderly, that's a UTI symptom. But that usually resets after treatment. Good luck!

Expand full comment
Don Akchin's avatar

That's why we're holding our breath for a couple months to see how much she recovers her capacity.

Expand full comment
Alice Goldbloom's avatar

That is absolutely true about UTIs.

Expand full comment
Debra Rubino's avatar

There are care managers that can coordinate health care appointments, visits, doctors reports, and even submitting things to insurance companies, etc. The problem: They are very expensive and most of us can't afford it. If only that would available to everyone.

Expand full comment
Susie Kaufman's avatar

It's a mess. I'm sorry your mother-in-law is going through this disturbing and confusing experience. It infuriates me every time I ask the provider if x or y is covered by Medicare and they can't answer my question. Why not? I always think that there are so many people with cognitive issues or language issues who really can't manage that situation.

Expand full comment
Alice Goldbloom's avatar

Aside from the system, the care of an elderly loved one is very hard. Sadly assisted living is probably not enough support. Taking meds consistently is an issue as are nighttimes. It’s a hard journey.

Expand full comment
Don Akchin's avatar

Indeed it is, Alice.

Expand full comment
Gary Buzzard's avatar

Don, you have it right, and I think the main problem is that healthcare should not be a privilege for those that can pay--it should be a right. Medicare for All would be the easiest fix. Of course, it would be expensive, but in the big picture, it would save money if people were not afraid to go for their checkups and have routine preventive care.

Of course, the extreme specialization is also a problem. There are head doctors, nose doctors, and doctors for the left hand and the right hand. And the left hand doesn't know what the right hand is doing. I hope your mother-in-law survives the bureaucracy and gets better soon.

Expand full comment
WENDL Kornfeld's avatar

I'm so sorry everyone is going through this messy & frustrating process. I would add a third "C" to communication and coordination: Caring. Each person cares about their responsibility and is committed to carrying out their part correctly, and how that intersects with everyone else's. Following up, not making assumptions or hoping someone else connects the dots appropriately. Caring to see things through to optimum result.

Expand full comment
Jackie Oldham's avatar

I'm so sorry that your family is going through this. But--Bravo to you for reporting on this nightmare medical system. Since last November, I've been going through a similar situation with my 76-year-old aunt, who was hospitalized and sent to rehab for pneumonia. The compartmentalized communications from the rehab center medical staff and the billing department resulted in her Social Security income being illegally garnished. My aunt and I are weighing a lawsuit against the facility and a consult with the Maryland State's Attorney.

Expand full comment
Don Akchin's avatar

Isn't it maddening? and infuriating?

Expand full comment
Jackie Oldham's avatar

It certainly is! And frustrating.

Expand full comment
Janice Bayruns's avatar

Hi Don, I'm so sorry you and your family are experiencing this all too common scenario for an aging loved one. I'm in the industry of what's called "long-term care," with years of experience both professionally and personally. I was my father's caregiver for 19 years after he had a stroke at the age of 62. The system does not adequately support the care of the elderly and disabled, but there are resources and information out there on how to navigate all this. A suggestion that may help you in the short term would be Geriatric Care Manager. These folks, typically nurses or social workers, do exactly what you described, they coordinate all the care providers as a single point of contact, with experience and knowledge. There is a fee, so the solution is not accessible to everyone. You can find out more about these individuals at alca.org.

Expand full comment
Don Akchin's avatar

Janice, thank you for this resource. This is so needed by patients and families.

Expand full comment
Janice Bayruns's avatar

Rather aginglifecare.org, I gave you an incorrect url.

Expand full comment
Kathy Shulman's avatar

Hi Don, this is such a well written piece. First of all, I am sorry that Lisa's mother and your family has had to suffer our uncoordinated system. Secondly, we do need major reform. The idea of a coordinator is an excellent one. My father was a doctor and he said that the most important health relationship that each of us has is our primary care doctor, or internist. I have found that to be true. And as we age, that relationship is tricky because as most of us age, we have had doctors who have retired recently. And that is especially true right after COVID. I would suggest that you consider writing about how each us can find a good primary care doctor after our doctor of 20-40 years retires. I have thoughts on that, should that be helpful. Thanks for your excellent writing.

Expand full comment
Don Akchin's avatar

Kathy, thanks for your comments and your great suggestion.

Expand full comment
Amy's avatar

😢 As I told you when we saw each other, my brother is in Memory Care.

Expand full comment
Don Akchin's avatar

It is so sad to lose the people you have known and loved while they are still alive in body.

Expand full comment
Sue Cauhape's avatar

Please, let's not hand this problem to the government. In the present climate, government health programs are being chainsawed into chaos. The idea of giving the NP in a doctors office the duty of coordinator is a good one. That person already knows the patient and can more easily coordinate their care instead of hiring another person, probably an outside resource, that will only add to the chain of chaotic communication and lag time. Excellent article, Don. Thank you. I spent a few days in a local hospital and the nursing staff was in disarray just in a 20-bed institution. A case like yours boggles the mind. I hope your MIL is doing better.

Expand full comment
Don Akchin's avatar

Thank you, Sue.

Expand full comment
Donna Avery's avatar

I'm living this with my mom. Her skilled nursing facility is all out of pocket. I'm the coordinator for everything. It's exhausting, time-consuming, and prohibitively expensive. My best wishes for everyone navigating out fractured system.

Expand full comment