Concerned about the future

[laurenac81]

I have been reading thread on the forum hoping to find some information that is specific to my situation. I have read a lot about preparing early as far as remodeling the home if necessary. This concerns me because I live in an apartment with my boyfriend, John, and his mother, Janet. We cannot afford to buy a house at this time so I am at a loss as to handle this situation, especially when she has deteriorated to that point.

Another concern I have is that John and I both work and we can't afford to have one of us stay home to care for Janet when the time comes. She has been approved for Medicare, but I have no clue what they will pay for and what they won't. Any information that I can get will be greatly appreciated. I want to be prepared for what's coming and I have no idea where to start first.

Thank you,

Laurena

 

[LizT]

Hi Laurena. So sorry about your boyfriends mom and your guys' situation. Im not sure what to tell you when it comes to your living situation. My only suggestion is to move somewhere that is on the ground level and that has a bedroom on the main floor, as stairs will eventually be an issue. Lots of wheelchairs will fit through standard sized doors. If not, there are door hinge extenders you can buy that will give u a few extra inches.
As for the medicare stuff- i dont know alot about it, but i do know that there are home health agencies that do accept it, so you should be able to get someone to come in. you or your bf will have to look into that to see what is covered and what isnt.
im very sorry you had to come here, but am glad you did find us. welcome. keep coming back. there are so many helpful souls here.
good luck to you and yours.
liz

 

[Iloveocean]

I have to say, ground floor makes everything so much easier. Our house is a small ranch and I can't tell you how good it feels for my husband to be able to access the entire home and get outside easily. I too would recommend moving somewhere first floor. You will still have to probably get ramps etc. it's just a huge difference between accessing an apartment and a ground floor place. Good luck!

 

[Katie C]

Laurena.. you are doing such a great job trying to be prepared and learning as much as you can. I agree that if you can move to a ground floor apartment, that's going to help a LOT! Also... not to be gloomy but... if it turns out Janet DOES have FTD along with her ALS, there are some modifications you may never have to make. When Glen died, he was still quite mobile, although he had lost much of the use of his hands. So... it's a fine balance between being prepared by staying a step ahead and getting too far ahead of yourself and worrying about things that might be a non-issue.

 

[laurenac81]

Thank you all for your suggestions. I should have mentioned that we do have a floor apartment. It is one thing we made sure of when searching for an apartment before she moved out here.

Katie, Thank you for the kind words. I am trying and I understand what you are saying about getting ahead of myself. She has an appointment on the 18th and hopefully that will shed some light on the situation.

Thank you again everyone. I hope you all have a great day!

 

[rkyoung]

Contact your local adult welfare agency. The clinic social worker should have already suggested this step to you and should have given you the number to contact. You will need to obtain a caseworker for your mother-in-law. They will point you in the direction you need to go. The lady will qualify for state aid which pays for home health aides to assist her while you are working. Trust me, you will need the help. They will pay for much of the necessary durable medical equipment you will need. Also medical supplies. When I first got into the situation, one of my family members was unemployed and wanted to arrange to be paid by the state for caring for my sister. My sister and I quickly shot that down. The emotional toll of trying to help the PALS is extremely great. The hours where outside health aides took over were an emotional relief. I believe it would have been a big mistake not to use home health aides. Your family deserves compassionate care. There are programs available. You have to look for them, because unfortunately they don't look for you. My best wishes to you and your family.

 

[Lavender Lady]

Also, contact your local ALSA and MDA associations in your area they have loan lockers to help with equipment.