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toneunknown2 Posted April 2012

Caring for a mom with dementia.

i'm 40 in june and my mom will be turning 65 in july. she has dementia psycosis and is in need of 24/7 care. we are living in her house (which is in great jeapordy) and i have a full time caregiver that works around the clock and part time caregiver on the weekends. there is a mortgage, doctor copays, her meds (which some are not covered) diapers, instead of feeding just me i have mom and the caregiver, so my grocery bill is almost tripled. i also have everyday things like utilities, water, and cable/ internet which has gone up as well. mom my olny brings home ,1400 a month through medicare and for just one caregiver it's 1,500 then 75 a day for the part time. i also have truck payments i'm always behind on so add late fees, insurance, and my BASIC needs. the point i'm trying to make here is i dont make enough money and i'm sinking fast. when asking for any kind of financial support i keep running into dead ends. there's always some kind of stipulation that prevents her from being eligible. medical..she makes over $800 a month unless i want to lose the house (probably going to happen anyways). Veterans assistance..she's eligible for it, but since she has a house in her name she isn't (seems like there's always a catch 22). i have a job but the pay isnt great and right now i'm on fmla because the fulltime caregiver had an emergency. i went to the doctors to have paper work sign but they charge $36 to $72 just to sign. i coudn't afford it because i need to make sure her meds and diapers are there and that money is the difference. so now i'm taking time off work with no pay and i'm really worried whats going to happen. i'm afraid i'm going to lose my truck, worried about the power being shut off, worried i'm not going to have her meds or diapers, food, etc. and not to mention i am also dealing with my mom who doesnt even know my name. WHAT DO I DO? WHERE DO I GO? WHO CAN HELP? I've had her in two homes but only for a short period of time until i could find a caregiver willing to work 24/7 and since she's been home she's is so much better off and i dont want that day to come when she has to go back in one. i'm a new member to this site and this is my first discussion. in later ones i would like to go into the emotional details i'm experiencing because it is really draining on me and consequently i have no social life anymore, but right now i'm trying to be strong and reach out for some kind of assistance. i'm doing the best i can and with only one brother in florida who is no help. i am at a loss... i just feel like this is a bad nightmare that i cant wake up from. there has to be a state or federal program for this kind of thing. i know my mom isnt the first mom with this illness and she payed her dues and now she needs some in return. thanks for reading my post and hopefully someone out there will have some direction for me.

toneunknown2 Apr 2012
thank you jeanne for the information...i'll look into medicaid. she makes more than $800 a month so i dont know if thats a problem. i didnt think to look into county services but if i can just talk to someone that knows the avenues i can get started on that will help in a big way. i feel so overwhelmed with all this and now that i'm not working and staying home with mom it might be the most difficult challenge yet. once again than you very much.

jeannegibbs Apr 2012
Have you applied for Medicaid for your mother? With an income of $800/month she should qualify. She is allowed to own a house, especially since she is living in it! That is definitely where you should start. Have you talked to Edler Services or the Department of Aging in your state? Or Social Services in your county?

When my husband developed dementia I called Social Services. A social worker came out and did an assessment. She was highly knowledgeable not only about the county programs but about other resources and programs he might be eligible for. It is a huge maze of private and public organizations, and it is hard to navigate it alone. Please get the (free) assistance your mother is entitled to in figuring this out.

And yes, do come back with other posts about other aspects of this stressful situation. But it sounds like getting some financial help is a high priority.

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