Dear Gayle,

I am sorry your Mom has AD (Alzheimer's disease).

My FIL has AD in stage 7 and he is 90. Like her, he is pretty healthy although he has congestive heart failure. He stopped walking on his own this year.

He had been in his own house for 6 years in IL and we had had home care for 5 years for him. We finally decided that home care is too pricy so we found a residential home for memory impaired in VT (near us) and we got on a waiting list and waited 9 months. Then we moved him last year and flew with him to the new home. We tricked him and he thought he was coming to "be with his son and work together." Well they never worked together really for a long long time. He actually enjoyed flying and asked if we could go to the outer space!!

If you have to move your Mom, you need to make arrangement first and sign up for a memory unit in Calif. I think Calif. is more expensive. But medicaid applies there and the medicaid bed does not come handy so you need to sign up for one first. It may not be near where you want to be. Also, family is always the one that can help legally even though now your brothers don't seem to care. Friends can support you, but not your Mom who has AZ and most of her friends won't come to see her anymore (most friends want to recall the past but she cannot anymore.)  Also, if you move the person with dementia/AD, they always get worse trying to adjust unless she really likes the home without any trouble.

My FIL seemed to be Ok in the new home because he likes it.

When you move, you can ask her what she wants to bring. Call the airline earlier and ask for wheelchair so she can get through the checkout with special priviledge. However, my FIL didn't go to a special line to get through faster. We waited for a while to get the wheelchair. In the meantime he was very upset at the airport so I had to hold his hand all the time while my husband did other stuff for the flight. My FIL was somehow asked to get up and sit down again at the monitor but it should not have happened. So I guess we should have had someone telling them he has dementia. So expect some problems at the airport. My FIL actually loved the flight! When my FIL arrived at the airport at the new place, there was another wait. So avoid a long wait at the airport. The airport is not dementia-friendly  for sure.

Also get first class seats or sit in front of the other people so she can get in as the first one. Sitting in the front helps reducing her anxiety. (Make sure the staff knows about her disease.) Bring some activity kits for her to do in the plane. You must try to get a direct flight or you would need another person with you. By the way, it took me and my husband to bring my FIL on the direct flight.

It depends on each person to make the flight work. My FIL liked the flight a lot but it was the airports that had some problems. Overall, it worked for us.

Also, when my FIL moved, he was able to walk with a cane. If your Mom is in a wheelchair, it may create more problem (if she cannot walk.) It depends on how sick/confused she is.

Good luck,

Nina

Gayle

10/10/11 2:16pm

Hi Nina, Thank you for your help & info. I NEED everyone responding to understand my Mom's medical condition. I don't know the stages of AD, but she is mentally not with us anymore. She is a PHYSICAL shell, can't recognize anyone, can't chew food, CAN'T DO ANYTHING but walk around in her merry-chair constantly. She does not understand ANYTHING. I've checked with the commercial airlines & found out they will NOT accept her as a passenger. They don't want a situation to occur in which the plane might have to make an emergency landing somewhere. I also found out it would cost around $30,000.00 to fly her FL to CA on a private medical jet. In this economy, who has $30,000.00? My decision now becomes DO I LEAVE HER IN FL & GO TO CA BY MYSELF? Does anyone have any experience leaving an Alz. patient alone in another city, with no-one to visit her? I've spent 10 years taking care of her. I'm alone in FL, don't have any friends here, & can't get around very well because of my back & an auto-immune disease. I am all alone & am very depressed because of my situation. I can't work as a Production Controller, can't go out to socialize & make new friends (or anything else) anymore. I've been told by her Dr. that she could last another 10 years. Please answer with any opinion. I would really appreciate it. Best, Gayle

NC

10/10/11 2:58pm

Gayle,

 

I am so sorry it is so bad that she cannot fly!! I know this is hard. The worst thing is you don't know how long she has left!! It is like roller coaster forever...

 

In this home where my FIL is, they did have one resident whose daugher was in Calif. and the Mom/home is in Vermont.

 

If you trust that the home will do the job, you sure can move to CA and be a long-distance caregiver. It happens. Where my FIL is takes us to drive 2 hours to go there as we are not in the same country. It is the closest place with the best quality.

 

I was thinking this is possible for you. However I need to warn you that as you know, the home sometimes requries the family to put in some effort to participate or help out. Sometimes they need your permission to do things. The way to handle it is to make sure you can communicate with them in the most efficient way such as email or fax. Calling is also a plus so get a calling card or a long-distance plan with the phone.

 

My FIL was in IL for 5 years and we had been a real long-distance caregivers for him. It was hard as we had to spend money to travel that far like 3 times a year or 2 times... We had to hire home care people and it was expensive...

 

Yes, it is possible if you move. But you will have to accommodate this by travelling there a lot and by talking through a long-distance  a lot to the caregivers there. This way, you will not be able to see what is going on every month. Now we see my FIL once or twice a month. This beats the long-distance (15 hours drive!) when my FIL was in IL. In other words, the closer, the more convenient for us. I say this for us caregivers, not for the patients. As a long-distanced caregiver, there are also plus and minus. But it can be done.

 

The thing I see is, given that we are closer, we can buy his clothes easily and see him easily if he is in the hospital or gets very sick. We can see his doctors often. If he needs hospice, we can see the professionals easily every month.

So you need to decide if you are willing to forget about micromanaging and leave all the tedious work to the home.

 

Take care,

Nina

Just want to add that if My FIL is that severe and cannot talk or walk or eat regular food, it would be very hard for us to move him and he would have had to stay in IL. We were lukcy that we moved him before he stopped walking/eating/talking this year. I said that because this year he started pureed food, stopped walking on his own and stopped talking once. He is progressively going into stage 7 and will be worse next year. He had a good time without lots of changes in the new home for almost 7 months. It is his disease.

The problem is you have to move the elder in earlier stage, not later. If the person is very sick with Alzheimer's, you would need an one on one person next to her all the way. It does not matter if you fly, drive or take the train. It is the process that has the problem. The elders in this stage cannot mingle with regular people or even a large number of people in train station, hotel or airport. If you are not rich and cannot hire ambulance by air or by road (this is expensive) so there is some caregiver next to her to calm her down, then you may not be able to move her.  She would be combative. It is her mood that is the problem. Also when we moved my FIL, he trusted my husband so he listened to us. If your Mom cannot follow your requests on the way, you are going to have to hire another person to be with her all the way.

Regards,

NC

Gayle

10/10/11 2:34pm

Hi NC,  Thank you for your informative responses.  Please read my other 2 responses I've made.  I would value your opinion on how I should proceed.  Best, Gayle

Gayle,

Carol is right. I remember now you may need to hire a one on one caregiver at times (part-time or longer) to take care of your Mom if you are in CA.

We even have some one-on-one caregiver in the home for my FIL as companion for 4 hours per week.

The person you hire can do the shopping for you and see your Mom for you and report to you on a daily or monthly basis. If the home needs the family to do something, the person can do it for you. e.g., now my FIL's home does not have evening driver to drive him back from the ER, so we have to do that in the future. (The ambulance is too expensive and is not covered by medicare due to non-emergency on the way back. This is not a NH facility and it is a residential home.)

It is possible if you move yourself. But you may need someone to help your Mom. Since she is on medicaid, you may have some extra money for the personal caregiver like CNA (certified nursing aid.)

Also, your Mom is really in late stage - stage 7. She is close to end stage. She could be in hospice for comfort care. The end stage usually lasts 1-3 years, so you may want to consider that it is just a little bit more, and you may want to move after the whole thing is over.

Since you are responsible, you cannot just go away without being involved. The closer, the more convenient for such responsibility. Try to get a support group. Meet new friends and etc. Get into some acitivities for yourself. You can also visit CA at times. Also, after 8 years in FL, your environment and friends may also  change in CA. It won't be the same.

Take care,

Nina