Geographic infusion discussions

ekbevan

My husband had been diagnosed with Mild Cognitive Impairment and we are being advised to begin infusion treatment. The challenge is that we are snowbirds living half a year in Florida and the other half up north. Has anyone had experience navigating this type of situation where the 18 month treatment is coordinated between two neurologists and two infusion centers

jgreen

Hello @ekbevan

Welcome and glad you found us.

I have not had experience with infusions. My DH is in stage 5 or the end of the moderate stage. I recommend you talk with the provider who diagnosed your DH to see what they advise. Perhaps a center like Cleveland Clinic or May Clinic would have regional centers where his care/health records could be coordinated?

I hope all works out for you.

jfkoc

I would see if one of your neurologists can set this up for you.

harshedbuzz

@ekbevan

I'd reach out to the neurologist in FL and see if they can assist with a smooth hand-off in the spring. Perhaps they have a colleague in your area up north. It can take quite some time to be seen by a new neurologist, which would interfere with continuity of care.

TBH, my parents used to snowbird and managing more complex medical issues was always a challenge with 2 sets of specialists. At one-point, poor continuity of care and dad (w/dementia) being unable to advocate for mom (caregiver) became unsustainable and we moved the back to where I live fulltime. TBH, I think the 2 homes because confusing for dad in the middle stages.

HB

SDianeL

ditto on talking to your Neurologist. I would first discuss whether you should continue snowbirding every 6 months. As the disease progresses you might not be able to continue moving between locations. Change is extremely difficult for PWD. We had an RV and had to stop traveling. It caused him anxiety and was extremely stressful for me. Read the book “The 36 Hour Day” which will give you an idea of the disease and tips for caregiving. Do a search for the 7 Stages of Dementia that lists behaviors in each stage. It may help you decide. Come here often for support.

Miles2Go

Snowbirding is a wonderful way to enjoy the best of both worlds.  But the reality of dementia is to maintain consistency.  DH and I were snowbirds for at least 25 years. It became more difficult as the dementia progressed.  We usually drove back and forth although DH has not driven since 2019.  Stopping along I95 for bathroom breaks became a worry as he insisted upon going to the mens room alone, so I was often concerned that he may walk away when I was in the ladies room.   In November 2023 we took the autotrain which saved a lot of driving but DH was very agitated.  He expressed danger with the heating system, the train movement, etc.  he kept me up the entire night.  Fortunately we had a private bedroom and bath.  But I was exhausted when we arrived and had a 3 hour drive to our home. As we moved from home to home, he became more confused about where we were and had difficulties with the showers - most likely because heating systems differ, and the handles are different for our baths in the two locations.I noticed the last few times we traveled he progressed into the stages more rapidly.  We returned to the north in early 2024 and he jumped into early stage 6, moved through stage 5 in a little more than a year.   That return trip again on the autotrain was extremely upsetting to me because he insisted that someone drove him in my car and I went off with some other men. He was glad that he finally found me and that the man returned my car.   These delusions were real to him and he was very descriptive about what he thought happened.

We have not returned to FL since then because he has really progressed.  I placed him in MC this past summer due to his advanced dementia and comorbidities.  He is now entering stage 7.

Basically,  the movement from one home to another causes confusion and in DH case appeared to have escalated his dementia.   Each travel option (car, train or plane) presents its own challenges with dementia.  And you never know when the anxiety, paranoia or delusions will present themselves and how.  As the dementia progresses, consider remaining in your primary location where you have the best doctors, and the support of family and friends.  Consistency is important for dementia.  
Best of luck to you on this journey.  It is a difficult one that none of us ask to join but it strengthens us.  God bless you and all who are dealing with this disease.🙏

Michele P

https://alzconnected.org/discussion/75101/geographic-infusion-discussions

We live in Florida. Mayo Clinic is not accepting new neurology patients now in Jacksonville. They are concentrating on research. Even existing patients are being referred to another neurologist. UF Health has a neurology department. There are also independent infusion centers with long wait lists. I would have your neurologist coordinate care in Florida now.