My DIL has a mother who lives in Florida. DIL is in Massachusetts and her sibs are all over, none in Florida. Mother is 92 or thereabouts, has dementia but theoretically has been coping alone, with DIL phoning repeatedly, finally now has gotten a home health aide in. Apparently she's had an Event of some sort and the doctor says, get her up to Boston with you. Easier said than done. Mama has been refusing to go on a plane for years, refusing to move. Has anyone dealt with taking a non-compliant dementia patient on the plane with them? Any advice? DIL is going down this weekend and will have to stay until she can get a resolution. She's found an "assisted living" near her that has a bed. Frankly I doubt that's the best place for mom, but first things first - how can she get her on the plane? And behaving while she's on it?
p.s. - for newbies, I've already gone through dementia with my husband, who died a couple of years ago. Been on this site since 2008. I'm not crashing a forum that's supposed to be about spouses!
I am so happy that you brought up this subject. I don't have that situation right now but what if I do. My son lives out west and if I can't care for DH that is where he may have to be moved to and it was a concern for me.
Nowadays folks seem to think that flying is the only way to get from point A to point B. Driving Mom to Boston would take only three or four days, and accompanying her on AMTRAK probably only one long day.
I am with Gourdchipper* Driving or AMTRAK may be the better way to go. Good luck to all. Maybe another sib could get down there to help with the trip north. And fiblet it is a vacation trip!
Is she generally non-compliant or is it just the air travel that distresses her? Regarding the car trip - can she handle sitting in a car for long distances, and can she handle being in strange hotel rooms? All things to consider. If she is okay with those things, I agree that a car trip is the way to go.
As for the plane, we had a similar situation in our support group a few years ago. A wife insisted she wanted to take her EOAD incontinent, stressed out in strange situations, agitated, pacing, confused husband on a 3 1/2 hour plane trip from Florida to Connecticut. We talked her out of it. It is not fair to the person with dementia to put them in such a stressful situation, and it certainly is not fair to an airplane full of passengers to subject them to an out of control dementia patient.
She is generally non-compliant with her daughter, though she's accepting the aide helping her. She has refused to fly up, even for the granddaughters' bat mitzvahs in the last year or two. My DIL is the youngest in a very competitive family and everyone yells at her, I think, especially her mom. But I hadn't thought of driving her back.. that might be a really good possibility. It may be that they could drive through rather than stopping at motels. Hmmm...
DIL just called. The home health aide called 911 and mom is now in a hospital. Everything in flux. DIL is in Atlanta on way down. Mother refuses to ride in car and screams. I said a) get the doctor to prescribe meds. b) Ignore what your sib's spouses are telling you about antipsychotics being dangerous. (explained why) c) get one of them dammit to come down and help you. d) 3 midnights. (DOES ANYONE KNOW HOW LONG THE MEDICARE OK will last if mom has the 3 midnights and then gets brought up to Boston?) e) Get someone to find a Nursing Home, not an ALF, for her in the Boston area.
My question this time: does anyone know a case manager (private) in the Boston area that can be hired to find someplace to put her?
I would not risk air travel. any disruption on board could cause a really severe legal liability. costly as well. and she could objectly get arrested at the first landing if she starts a commotion and the pilot fells shes a risk on board. just not worth that. I would also make plans to rent a large van if possible for the drive up, and have a medical person accompany you on board. and have plenty of meds to basically keep her knocked out til you got there. sorry but I see it as more reasonable a choice instead of all the anxiousness and hype otherwise. you can have a transport chair inside of the van and it would be quite comfy for sleep as well. just a thought. I would not do any public transports for the reasons above. first she needs to find the right meds to be able to handle her. maybe you can speak with the social worker at hospital now and find out if they can arrange TRANSPORT themselves for you?? hope it works out briegull! divvi
briegull*, we have a close friend of the family who is a Geriatric Care Manager in the Boston area. Her advice was invaluable when we were going through the crisis with DH 5 years ago.She is a social worker by training. I'll email Joan and ask her to send the name and contact info to you.
Amber and abby* have raised very valid questions...is it really necessary to move her to Boston when she can be placed in a NH (most likely) in FL? Is the issue that there's no one in FL to oversee her care in FL? Could your DIL hire a geriatric care manager in FL to look in on her mother say once a month and then visit her every 3 or 4 months to make sure she's being well cared for? Even if it's only on a temporary basis until your DIL can get things arranged in Boston? It might be a reasonable interim solution.
If something happens to me, my DH will have to be moved to be near my family to ensure he is being well cared for so I understand that a move might be necessary. Just trying to offer alternatives in the short term.
Thanks everyone. Mom apparently has diverticulitis. Moving her any distance is on hold for the moment. Meanwhile, a friend sent me this link with EXTREMELY good advice re air travel and other things to do with dealing with dementia: http://www.alzcompend.info/?p=133 and DIL printed it out to take with her.
Questions - Mother is 92 and happy? and content? in Florida. Then why even move her? Why not let her live out what ever remaining time she has in her home where she is familiar with the surrounding and happy rather than put her through the move? And when the time comes move her into LTC there? Just another way of looking at this.
As far as the siblings BS goes tell them to take over.
I'm sorry to hear you are in this stressful situation. Once husband had an event and there was no choice for me but to fly there and return with him to here. He was very passive due to meds, and the flight was *only* two hours or so but it was still frightening. divvi and joang made very good points. LFL, who knows the ropes, made good points about a care manager. They can streamline things and have good practical information as well as connections.
But, a care manager in Boston can do, I would guess, pretty much what a care manager could do in Florida. Amber put into words what I was thinking as I read through your topic. I wonder why this is up to the doctor. Your DIL sounds wonderful and seems to have gone above and beyond and now to have the added responsibilities of her mother nearby...
Perhaps DIL's mother will need more care than an ALF can/will provide. Is NH placement for her in Florida a likely alternative for the future?
Best wishes to all of you. (PS- love your profile photo.)
DIL went to mother's apartment today. It was a total mess, even though the aide had cleaned up the vomit which was all over. Mom, in the hospital, thinks she is in a hotel, thinks her daughter is a nurse. Daughter had better not dare to touch her purse (behind her on the table). She is not pleasant to deal with.
It's fine to say, let mom live alone in her apartment where her friends are - but at 92, she's outlived pretty much everyone. That's what DIl and her sibs have been doing for years, letting her live out her life. Mom refused to go live with (or near) any of them. And would not, until this, even allow an aide to come in. She is severely dehydrated. She obviously isn't capable of tending to her most basic needs. And there unfortunately comes a time for some, where they can't continue the way things are going. At this point the county might sue DIL for neglect!
Briegull - I'm not trying to give you a hard time....believe me, we all know that we don't need others telling us how to handle a situation. I was just trying to open up other avenues to explore. Last question - could she go to live in LTC or NH in florida and save her getting upset travelling?
Old ladies and their purses...you want a good knock on the head try and touch one!!!
Yes, they are exploring her staying in Florida .. but we all know here that placing a spouse doesn't mean you can walk away from them, and if she's in Florida, with sons in NY State, Oregon, and daughters in Massachusetts and NY State, somebody's still going to have to do a lot of travelling.
The rest of the family is convinced that a NH will be paid for by Medicare "for the forseeable future" and that they don't need to talk to a lawyer down there. Or maybe my DIL could stay indefinitely there and take care of her in her apartment. Oh, and that they can't do anything against her will, in spite of having a DPOA/HC, without going to court.
I'm concerned about your DIL. Perhaps she has to ask her siblings for a schedule of when they will come down to give her respite and how much they are going to pay for for being a caregiver.
She should also let them know that if they think Medicare is going to pay for NH then they have no idea how things work, even if they said "Medicare" when they meant "Medicaid."
I'm concerned about her, too, Paul, but her family is very strange. Now that she has mom fairly stable STILL IN THE HOSPITAL, she is looking for nursing homes.. the theory is that she will need PT, and that will get her medicare for a little while, staying in Florida. DIL is finding all sorts of nasty things all over the apartment.. maybe that's something we spouses can be grateful that we've never had to deal with as much as the "daughters". But DIL is getting rest, and her mom seems to have become compliant, at least with the nurses there! So DIL is seeing that it might really be best for her to be cared for down there and not worry about bringing her up north.
briegull*, what a good MIL you are to listen, advise, and listen some more to your dear DIL. She must really treasure you to confide and seek your counsel about something so personal as this huge dilemma involving her family.
Mom is still in hospital. Was constipated, got lots of laxatives, and had diarrhea, then a doctor said well maybe she has an infectious disease because she had diarrhea. The hospital seems poorly run, with no one reading charts, frequent rotation of doctors and nurses who have to start from the beginning each day, etc. No clue about dementia as far as I can see. Mom is having trouble swallowing one minute and spelling words for the speech therapist the next. DIL is there for heaven knows how long! She has investigated getting ground transport back to MA, has a connection in place for that when needed. Someone suggested hospice to her so I gave her the backup on that and also on what I think of as the Feeding Tube Conversation, since mom is barely eating anything.
For long-termers here, I knew that Andrew, my lifesaver for two years when my husband was deep in the weeds, had moved to Florida. I also knew he had a troubled past. I looked him up. All I found was a mugshot, booked for "battery." Oh, goodie.
briegull*, I hope Joan passed on my email to you regarding the name and telephone number of a geriatric care manager in the Boston area. She would be a resource in case your DIL needs someone in Boston. She might also know of a GCM in FL. No pressure at all just wanted to make sure you got the info.
I was surprised to learn that many hospitals in FL are not well run...I found that out when my friend was dxd with liver cancer and neoblastoma. I thought most were very good due to the elderly population in FL but apparently not so.
So sorry you DIL has to deal with all this. Also sorry to find out about Andrew.
Yes bluedaze, I wondered about Andrew too and was sad to read that. He is a bit like "the girl with the curl on her forehead", when he was good he was very,very good and when he was bad he was horrid. Hope that the situation improves for your dil soon,briegull.
her mother's condition sound like my mom when she was found. She was found crawling on the floor trying to get to the bathroom. The toilet was full of #2 - had to replace the toilet. She had been living on peanut butter and cream cheese frosting. Only one sister lived near, about 60 miles and had not been there in a while. So none of us had any idea.
Briegull*, Andrew was such a wonderful help to you. I remember all of us wanting him at that time. If I remember correctly, though, you had something missing when he worked for you. Do you think, now, that he may have taken it?
Briegull, I have been following your posts about your dli's mother. Several years ago my mil, who had dementia, aka alzheimers (the family always just said her memory is bad!!!) was flown by private plane from eastern Mi to Wisc. There are sometimes pilots available to do this for special cases. I don't know how you would go about finding someone but I am sure there is a way. They, the family, paid fuel expenses i think. I also have heard of people who volunteer to fly people who need treatment a distance away. With enough sedation perhaps this would be a way to do it. Just a thought that might help. I thought I had added this post before but don't see it so will try again. Dorie
Well, as so often happens, the decision gets made for you. Mom just kept sleeping more and more, though no sign of what the matter was. One of the doctors talked about a PEG, Which is a feeding tube going directly into the stomach and the family rejected that, so she is now going to a hospice facility and family is gathering. My DIL has managed very well during all this. The hospital is really not very good so I am glad they are outta there.
Thanks to everyone for their advice and resources.
briegull*, so sorry to learn of this recent change, but perhaps it's the best in the sense she's no longer in the not so good hospital. Your DIL has had amazing strength during this. She is also very lucky to have your support and advice.