Why don't more Caregivers post here?

Discussion in 'Caregivers' started by MercyAngel, Jul 3, 2004.

  1. MercyAngel

    MercyAngel New Member

    Since I'm caring for my Mom who has Alzheimers, I immediately went to the Alzheimers board when I found this place last week. But I'm surprised that this message board is not more active. I guess most Caregivers post under the particular disease/problem they're dealing with?

    Let's get this message board more active and moving! I'll start...

    My name is Rose, and I'm a 24/7 Caregiver now for 5+ years in our home for my Mother, 82 yo, dx with Alzheimer's in 2000. She's now also in a wheelchair and can't do anything for herself anymore, so she's total care. I'm divorced and, thus, no one else here to help. I have one living brother who only lives 2 blocks from us. He doesn't even bother with us anymore (long story). I have a grown son who can't seem to be bothered either, but does live about 50 miles from us. I have one living Aunt who helps when she can, but she's 77 yo herself. If it wouldn't be for friends, I would have no one. :-( I just can't believe that family can treat someone like this, it's so sad.

    I plan on keeping Mom at home as long as possible. She does go to daycare 3 dys/wk for about 4 hrs, which is the ONLY break I get. During that time, I also have to run errands and try to have some time to myself. So that's a total of 12 hrs/wk that I have help. I can't work because I can't find a job for those crazy free hrs. I don't know if I could handle doing both. I admire folks who do all this and still work full-time jobs. I don't see how you do it?

    My biggest problem right now is the wkends. I can never seem to find anyone to watch Mom, thus, I sit at home almost all wkend, every wkend! I get bored to tears! If I do go somewhere, I have to take Mom along and it's not easy getting her in and out of my small car, dragging her wheelchair along. I have a bad back and I suffer when I do this. So you can see, I have no social life whatsoever, except maybe lunch with friends on wkdays while Mom's at daycare. I haven't been out on a Sat eve in over 5 yrs!! I guess it's all starting to get overwhelming (not that it hasn't been before!) now that Mom's total care.

    But for as much as I complain, I LOVE taking care of Mom and feel privileged to be able to do this. It's "the hardest job I'll ever LOVE!"

    Let's hear your story...?
  2. Yesh

    Yesh New Member

    My son is mentally disabled and was accepted into a program called aid to the aged, needy and disabled, offered through the department of social services. This progarm offers several different types of services form a in home nurse, housekeeper, personal care aid, and others. When my son has someone in the home caring for him, I use that free time for myself. Although the help may only be in the home for a few hours, I have a little time to shop or have lumch with friends. when I come home I am refreshed and do not feel totally overwhelmed.

    I know it is hard to put the care of our love ones into the hands of strangers, but for your mental, physical, and emotional well being, it may be something worth checking into.

    God Bless

  3. MercyAngel

    MercyAngel New Member

    What state do you live in? I'm in PA and have applied for every possible program that's available to us. We're already under one program through the Office on Aging that helps us with her personal care and daycare. SO the wkdays are okay, but I can never get help any other times to do anything on wkends especially.

    I know all states have different programs, but I never heard of the program that you're on with your son. Do you know how/where I could find out more info.

    (((hugs))) to you and your son.

  4. Yesh

    Yesh New Member

    Hi Mercy Angel:

    I was born in Buffalo, N.Y. Have been to PA several times.

    I live in northern Colorado and the people at the Department of Social Services have been more than helpful in explaining which programs my son is eligable for and how to apply. One thing suggest to me by a case worker, when I apply for benefits for my son (he is 22,) list him as a seperate household, that way my income is not included when determining his eligibility for services. As far as the agencies are concerned, I am a room mate not his mother.

    I might suggest going to the Department of Social Services and talking to one of the case managers. I have noticed calling does not work as well as talking to people in person. Also, ask questions, sometimes some of the case workers forget about services that are availabe; however, if you ask the right question, their minds suddenly remember a service they forgot about.

    I will admit, the running around involved in getiing all the information required can be tiresome, but in the end, it is worth it.

    the Aid to the Aged, Needy and Disabled program my son is on is offered through the Department of Social Service's Medicaid program. Eventhough I have applied for SSI for him, if approved, my son will be able to keep his Medicaid benefits because Medicare will not cover all of his medical care. Under this program we can hire personel from any agency we want, the Department of Social Services pays the agency. Being able to choose our own agency makes things much easier because I can choose the days and times I need someone at the house.

    Any way best of luch to you, I will be parying you will get the help you need,

    God Bless