2/11/05

Mary,

Look at this website http://www.patienttravel.org/ They could help find deeply discounted seats to move people like Mom. It may be worth a call. Love,JO

2/11/05

Hey everyone, 

Thanks Jo for the website.  I had looked at it before.  The issue with this 1.  It is for people who can't afford to fly and are more in the poverty realm of the spectrum.  2nd, is that it is intended to provide treatment options for the person traveling.  For instance, if you live in an area and there is one doctor who will treat you and you can't get that treatment anywhere else, they will help to get you there.  One instance would be if you had a child with brain tumor who was underprivileged and lives far away from a cancer center, they would pay for the weekly travel to and from the center.

Unfortunately, Mom and Dad aren't in the poverty level of finances and we aren't transporting her to get special treatment.  Good thought though, I ran across this before and inquired.

On another subject, sorta, Mom and the move and living etc.

Last night Kelley, her Mom - Naomi, and I met with a friend of theirs Lynda.  Lynda's job is to find housing for the elderly and to help find the proper care for them.  We had a very good meeting and Lynda has some good ideas that we didn't think of.  But first I did some research.

Well, first off, I want to say that when we wanted to move Mom (pre second stroke), I think the situation was a little different and we had a different outlook on her prognosis.  So now I am not too sure what to do with them.  On one hand, I keep talking to the people at VOP and their Home Health staff, and they assure me they can handle Mom, and they say with the amount of care she needs, they will be in their apartment all the time, most likely as much time as they are with Mom at  DM.  Then, sometimes I think that we may need a private duty nurse/aide to be there all the time, so someone one can keep a watch on Dad with Mom. 

I did some calling around and found out how much a companion/sitter would be to stay with Mom and Dad to keep Dad occupied.  I had an eye opening experience.  To have a sitter stay with Dad for 8 hours it costs anywhere from $14.00/hour to $16.00/hour with a 4 hour minimum each day you need them.  If you do the math at $14.00/hour/40 hours a week/ for 4 weeks (one month) the cost is $2240.00 a month.  Now this is a person who is "hands off" with care.  This is just a sitter and would do nothing for Mom.  And you would still pay for the help with Mom which I have calculated to be about $1500.00 (a bit high I think than actual cost, but using this for a round figure). So if you had the VOP do Mom and a "sitter" for Dad, the cost would be $3740/month without the rent, which is $2395.00/ month which brings your monthly cost to $6135.00 a month.  I don't think their finances would last long at all under this situation.  So all in all I don't think getting a private sitter for Dad will not work financially, for the long haul.

Now the home health staff said they would be in their apt. all the time.  Would that be enough to keep them from having Dad fuss with Mom? I don't know.  He may get to VOP and find some manly friends and be out of there or he may find a place to sit and people watch (like by the fire place in the main hall) and be happy as a clam.  At this time, I just don't know.  Would could have Dad at one of our homes during the day, but you would still have to have someone there with him, I don't think he can stay totally alone for 8-12 hours a day.  Same money thing, paying for care for both of them.

Lynda has an interesting proposal for us to think about.  She said you could rent a 2 bedroom apartment (on the first floor near our homes, which there are a lot of them in our neighborhood just as close as the VOP), and hire round the clock care (approx 3 nurses) and provide them with the second bedroom and board and some cash.  Lynda said that she know a few people who have done this.  You offer them a fixed amount of cash I.e. $2500.00 a month to care for M&D.  They take shifts say, 3 days on 2 days off and they rotate.  They sleep there and are there if M&D need care during the night.  They split the cash and they have free room and board.  Interesting.  Didn't know you could do that.  So you would have personal M&D care in an apartment for approx $4000/month (estimating high with a $1000.00 rent and $1000 utilities and food - which I think that would be very high).  Lynda knows nurses that do this and really like the situation.  They are nurses that are from another country (like South Africa), who are not licensed to work in the states, but were in their country.

Now, you could also save some money and this could be done in my house, but I would have to do some remodeling before they could live downstairs, our spare room is too small to have a wheelchair and the room would need to enlarged to encompass the entire garage and you would have to add a separate ac/heater (the portable one's just won't do for long term living in that space).  We would have to enlarge one of the doors between the kitchen and the living room since I don't think we could get a wheel chair through that door way.  It is not a support wall (by the desk) and would be pretty easy to do.  We would also have to make a ramp to get into the house.  As Jerry says some of this is a piece of cake.  We could use Emily's old room for the nurses room.  This option would be good, in one respect in that Jerry and I are there also, to keep an eye on the nurses and would be able to do something if the next shift didn't show up.  And the other advantage would be that you don't have to pay for M&D's rent in an apt or VOP.

Lynda, also knows a great shrink who deals with the elderly and makes home visits.  And she lives out near us, so she could see M&D (mostly Dad) on her way home from her office.  Lynda also has great contacts for therapy.

We also had a big big talk on how to move Mom to TX.  One thing that she told me is that her mom (who is not in the same shape as Mom, but has a lot of the same issues we have) is not allowed to fly at all because of the potential of developing blood clots in her legs.  Since we don't know why Mom had a second stroke and don't know if she had a blood clot (the most common form of stroke) cause this new stroke, she may not be able to fly.  Lynda had a lot of helpful hints about transporting her in the RV and thought that may be a good way to transport her if we can't put her on the plane.  One thing now, is that Mom isn't sitting as long as she was when the first plan was formed.  So I don't know if she could tolerate the sitting time from getting her ready at DM, the hour trip to the airport, the 2 hour wait (or so) to get on the plane and thought the security, and then the 2.5 hour plane trip, then the time to deplane, get through the airport and then the 1/2 hour trip to the VOP.  I think she would be up for about 6-7 hours at a minimum for the plane trip. She may be getting better and in a few weeks she may be able to tolerate that amount of time, but from Anna's last e-mail, I am not too sure she could now.

So, in summary, all I can say is that I am totally confused.  I think our original plan is a good one, but I don't know now with her having a second stroke, not just seizures, if that is the best plan for their overall care and transport.  I just don't know.  Maybe I will know better after I see her on Sunday.  I just don't know at this moment in time.

I hope I haven't upset anyone.  I really didn't mean to if I did, I just feel pretty bad knowing this was a second stroke, and these are just some of my concerns.  Maybe it is your turn to tell me it will be OK.

Oh, and Lynda's big thing she said to me is that we need to get a medical power of attorney for her as soon as possible and we shouldn't move her at all without one, especially if Dad is not traveling with her. Lynda said you can pick one up Office Depot or get one on the internet and print it out and do the get Mom to sign it in front of the notary republic at DM.   I tried to find one on the net, but couldn't find one for free.

Gotta run to a meeting.

M