Long-distance transport - sorry this is long!

ScreenName1

Hi!

I just joined this discussion board and am hoping others with some experience may be able to help me. My father is 82, has vascular dementia. My 79-year old mother is his primary caregiver. She is in good health. I live in Virginia. They moved to Florida several years ago but my Dad is from Pennsylvania. My Dad's condition has deteriorated rapidly over the last few months.

My mother was well-intentioned and thought spending the summer in Pennsylvania would be a sort of "last hurrah" or would somehow revitalize him a bit. I flew to Florida and drove the 2 of them to Virginia with a 1-night stop in South Carolina, we spent a few days at my house in Virginia, and then I drove them to Pennsylvania. The trip was nightmarish. My Dad has aphasia (speaks in a "word salad") and has occasional agitation and even violent/aggressive outbursts. He is unable to follow easy instructions and so getting him to sit back down in the car or to walk to the bathroom are ordeals. I was in Pennsylvania a few days before flying back home to Virginia. At the moment my brother is still there, but he will be returning home to Germany tomorrow.

My mother originally rented the condo in PA until the end of August but now is quickly realizing that this is not going to work because she cannot handle my Dad by herself anymore. She and I had previously already looked at and decided on a memory care facility for my Dad in Florida. The original plan was to move him there after their return in September. However, now we all (mother, 2 brothers and I) agree that it would be better for everyone's safety and sanity to move him to the facility as soon as possible.

So now comes my question: Does anyone have experience with long-distance transports of dementia patients? If I don't figure something out (and a private jet for $10,000 is out of budget) I will be forced to fly back to PA and drive them from there back to FL. Any suggestions are welcome.

Thank you so much.

May flowers

Welcome to the board, and sorry for this difficult situation 

I haven’t ever had to use one, but I have heard of long-distance medical transport companies. I have no idea what they cost. Sorry I’m not much help.

CatsWithHandsAreTrouble

Hi screenName1, welcome to here as much as one can be in this season of life. I've made a thread a while ago asking about tips for long distance travel. A lot chimed in with some good pieces of advice. Have you tried poking around the forum's search feature? Travel seems to pop up every so often on this forum and the spouse/partner forums too. I'll go see if I can share some links with you.

CatsWithHandsAreTrouble

I'm going to post some urls to other threads in the forums. 

• First is my thread for long distance travel to a different state, 9ish hours away:

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147560987

• Next is a family that is attending a wedding a bit of a distance away from home but within the same state I think:

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147560957

• Lastly, a husband is moving himself and his wife to Florida, not sure where from but it is also quite the distance:

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147561228

Try starting through there if you'd like.

[Deleted User]

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ButterflyWings

Our forum mate ABC123 recently moved her mom from Texas to Louisiana using a medical transport co she highly recommended afterward. I will try to find that thread for you.

*added: found one of the threads and Ride & Share transport charged $5300 for the 9 hr transport. Is your dad on any meds? It might be possible to manage him on a return flight with Seroquel or a sedative and TSA wheelchair escort (?) 

harshedbuzz

SN1-

I am sorry for the reason you find yourself here, but happy you did.

In your shoes, given the ages of your parents, I would ditch Florida and seek a MCF near you, sell the place in FL and set your mom up in a condo or apartment near you. Given the low priority of human services in FL and the poor funding it receives, I would move them to VA.  When my own dad was diagnosed with dementia, one of the first (and best) things I did was move them near me; they'd been splitting their time between MD and FL.

HB

Quilting brings calm

I’m going to agree with harshedbuzz( HB).  Take the opportunity to move them to VA.  Why?  

1. The Florida Financial issues she and others will tell you about

2.  Your mom needs someone around even after your dad goes to memory care or later into a nursing home.  She’s  only going to get older and you don’t know what her health will be.  Moving your dad later if you mom needs you will only be even more of a logistics nightmare than now.  

3.  I’ve done the  long distance multiple emergency trips that you could soon be facing with your dad in MC and your mom alone in Florida.  It’s not pleasant and it makes the being there a lot more hassle and much more  expensive  than if they are local.

ScreenName1

Thanks, everyone, for chiming in. I liked the suggestion about having my parents both move to Virginia - but my Mom did not. She said maybe in 5 or 10 years. Meanwhile, my Dad is now "trapped" in a hospital in Pennsylvania. He is having violent outbursts frequently and they are supposedly trying to manage that with haladol injections. Seems to me that they are just knocking him out to have the next shift deal with it.

Mom is in communication with the memory care place she has picked out in Florida, but the Pennsylvania hospital is recommending he go to rehab first, and the FL memory care says they need to be sure he won't be a danger to staff or residents.

So Mom and I are not sure what to do. There have been two appointments for Dad to be taken from the hospital to rehab but then he had an aggressive outburst shortly before pickup and then they won't take him.

Does anyone have any suggestions? Any other meds that might be more effective? Or other ideas? 

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harshedbuzz

ScreenName1 wrote:

Thanks, everyone, for chiming in.

I am sorry this situation is not more settled for you.

I liked the suggestion about having my parents both move to Virginia - but my Mom did not. She said maybe in 5 or 10 years.

Your mom is a little delusional. Her decision to visit PA was a stunningly poor one. I would watch her closely around decision making as she may be having her own cognitive shift-- with my dad poor decision making (executive function deficits) and personality changes pre-dated obvious memory lapses by several years.

At 79, however robust her health is at the moment, she is something of a ticking time bomb- a fall, stroke or cardiac event could initiate a cascade of crises that strand them both in FL which impacts all who would need to ensure their care. Do they have enough assets to fund care in FL for both of them through end of life? Because if they do not, it could get ugly. 

My mom pulled this on me as well. I took a tough-love approach saying my help was dependent on decisions that made sense. I assured her that we could reconnect after dad's passing but that I wasn't watching this train-wreck. I also promised that I would make sure dad was cared for should she die first but that my choice would be first available. It worked for me-- YMMV. 

Meanwhile, my Dad is now "trapped" in a hospital in Pennsylvania. He is having violent outbursts frequently and they are supposedly trying to manage that with haladol injections. Seems to me that they are just knocking him out to have the next shift deal with it.

Is he in a major teaching hospital in Philadelphia, Pittsburgh or Hershey or are you dealing with some community hospital with few resources here? PA can be all over the place in terms of quality of care as well as community resources. In the Philadelphia area there are a number of geripsych units to which your dad could be turfed for a few weeks to get psychoactive medications titrated to a level that would make rehab more likely to be successful. I expect Pittsburgh and Hershey would as well. It would also give you some sense of how he will transition to a placement. 

Mom is in communication with the memory care place she has picked out in Florida, but the Pennsylvania hospital is recommending he go to rehab first, and the FL memory care says they need to be sure he won't be a danger to staff or residents.

Rehab after a geripsych stay could make FL doable. That said, MCFs can and do refuse potential residents for any reason. My own dad was not offered admission at mom's first choice of MCF. And they can also boot residents as well. I find this is more likely at the sort of corporate places that tend to be most appealing to families. Sometimes they will give a resident a chance to complete a geri-psych stay but other times there is no second chance and your mom would be out the community/joining fee and have to scramble to get a Plan B initiated. 

So Mom and I are not sure what to do. There have been two appointments for Dad to be taken from the hospital to rehab but then he had an aggressive outburst shortly before pickup and then they won't take him.

This and the Haldol are worrisome. It would be better to be medicated proactively with something to ease the anxiety or whatever is driving the behavior rather than sedating him reactively if possible. 

Does anyone have any suggestions? Any other meds that might be more effective? Or other ideas? 

I would suggest a couple of weeks in a geriatric psych ward to trial different medications. My friend's mom did well with just a SSRI (Lexapro) for her agitation. My dad was already on an SSRI (Prozac); his neurologist added a small dose of Seroquel at dinnertime which dad's geripsych increased to a second small dose in the morning. He added Wellbutrin to try to "activate" dad out of his apathy a bit. It didn't help that but lessened the urge for dad to drink so we continued it. 

I would continue to work on mom around moving. If she were to have a medical crisis, who would be eyes-on? Does she have a close relative or friend in FL to keep her safe and you informed? Does she realize that a medical crisis could trap her in FL isolating her and inconveniencing her family? 

Good luck with all of this.

HB

David J

Based on my experience with my parents, long distance caregiving is difficult but possible. My parents bought into a continuum of care community in North Carolina, far from my brothers and me. They did this because the didn’t want to be a burden on us. As long as they were in the Independent Living section and able to manage their own lives, it was fine. As they aged, and eventually moved to the Assisted Living section, there were several emergency situations requiring someone to fly to NC and take care of it. One of my brothers and I did this several times, since we had flexible work schedules at the time. There was no resentment from any of us, we willingly did it. 

It took money, time, and understanding family to be a long distance caregiver, even though my parents tried to protect us from the responsibility. They didn’t want to impose on one of us by moving closer.  (There are 5 of us scattered around the eastern half of the country) We still were responsible, just from a distance. 

So when choosing whether to proceed with the plan in FL or having them near you in VA, think about who will manage day to day care/issues, and who responds in an emergency.  If it all falls on you, what can your brothers do to support you?

Good luck snd check back in here!