Whom do I turn to when your low of income trying to take care of a parent (90) at home? - AgingCare.com

Whom do I turn to when your low of income trying to take care of a parent (90) at home?

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Whom do I turn to to get help when your of low income trying to take care of a 90 year old parent at home? AOoA,State office no help. All I get is excuses or no return calls. I have been battling them for almost 2 years. With AOoA I've gone thru 5 agencies and over 30 aides.Aides who had no idea how to take care of a 90 year Alzheimer's patient. Aides who had on average 4 months experience.Now they say they can't staff rural Northwest Ohio. The State Department on Aging has basically forced me to go through a program called Consumer Directive, where I find someone and the State and Local Offices take their time having the prospective aide go through paper work and BCI checks costing up to 70.00 dollars. The process can take 3 to 6 months to complete. My mom is 90 years old and Alzheimer's is going to take her life. So because I pissed people off they all basically ignore me and go at their own pace. I have called State and Local representatives and it all funnels down to the local AOoA, the origin of all my problems. So now I feel like I'm in a small boat in the middle of a lake with holes in it and everybody is on shore watching us sink. Well I'm her 65 year son and I'm not going to let her drown. We have no family,she was an orphan at berth. my dad and his family have all passed away and I'm single with on X's or children.
Putting her in a nursing home is not going to happen as long as I'm alive. We spent together a total of 45 days in nursing / rehab homes and being low income you do not get quality care. So it will be interesting to read any responses to this post. Stay forever young, I'm out.



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RTB1ALB1 , your frustration is understandable as are some of the responses. I agree that the sarcastic ones aren't helpful though, GardenArtist is a terrific source of help in general. She's not trying to be critical - only trying to state what she sees as the truth guided only by your note.

You've been through rough times and nothing seems to get done by those who are supposed to help. I don't know where you live but nursing homes in my community treat Medicaid residents the same as others. I spent 15 years with one eye open even though my family was private pay. There was no way to tell who was who.

I realize not all communities are so fortunate but perhaps some homes are better than others.

Sadly, available resources to help caregivers in the home are sparse and hard to get. You have seen that and continue to see that. You've been run through a grinder and are angry. I can understand that.

As was mentioned, I wish that we could wave a magic wand and fix this for you, but we can't. You've tried most everything we can suggest other than, from what I read, opening up about nursing homes.

Best wishes for you and your mother on this journey. It's a cruel one.
Carol
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RTB, comments such as those you've made aren't going to encourage people to respond to your questions, especially the snide "Wow, over 36 min. and no response. That's pretty sad."

You're not the only poster on this site; review some of the posts and you'll find that there are a lot of people here who want and need help, and answers aren't always forthcoming immediately.

This is an on-line forum, not a chat room or one-on-one chat session where you get immediate answers to your questions.
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BTW, if you feel that you've "stumped the experts", and seem to be proud of it, you'll most likely not be seen as a legitimate or sincere poster. People aren't here to play games.
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"So because I pissed people off they all basically ignore me and go at their own pace."

And you don't understand why you don't get responses?

Sit down, calm yourself, adopt a different attitude and come back when you're ready to be more courteous.

Then others knowledgeable about Medicaid might offer suggestions. But be civil.
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You are in an incredibly frustrating position, Good caregivers are hard to find. You need to start your own search for a private pay caregiver, as suggested above. Ask friends, church members, the local hospital. Put a small ad in your local paper. Ask for 3 current reference after you interview then, But do it outside your home, coffee shoppe, family restaurant, Don't give out your home address until you are ready to hire them, Check every reference as well as do a background check,
Unfortunately, there is very little good information on caring for those 85 plus years, My business had 3 clients over age 85. It is tough to know what to do at times, especially given their degree of memory loss.
BTW, most persons with ALZ die from another cause, heart, respiratory diseases, to name a couple. I can tell you feel helpless, You have a hard road ahead of you. Alzheimer's is a first degree robbery, except you can't see the gun.
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So sorry you have so little or no help here. If I had a magic wand I would fix all this for you. No your situation is not a joke. I too have caregiver burn out with my adult daughter with CP. I ask family for help and get no response, so frustrating. Luckily I have a very supportive husband who helps a lot, but the care needs are always there, every day! Hang in there, I wish I had more help for you. If you have a belief system please pray to our Heavenly Father for comfort. Do you have a church family. pastor to lean on?
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states only have so much money; I never did get any help for my mom, so it's not just your situation and if my dad had not been a veteran probably wouldn't have gotten any help for him either, have spent 2 yrs. as well trying to get help for my hub's aunt and uncle and haven't gotten any for them either, except they did just call recently and said they if they were already paying for 20 hrs./wk. they could help pay for 20 hrs. of that a month, which that's not really much help, is it? so actually sounds like if you've gone through 5 agencies and 30 aides, you've gotten a lot more than a lot of people, so is it just the Alzheimer's experience that's the issue - not sure if you have Home Instead up there but I know they provide training in how to deal with it...but now we have the same issue with staffing being in a rural area as well, like was talked about last night re another situation, comes down to actually having someone in the area willing to do the staffing regardless of what the actual agency says, so...I know several people who have done the consumer directed thing, finding their own people - now not sure what the issue is in the timeframe they're taking in having them vetted but maybe you answered your own question; again, not sure what we would have done had dad not been a veteran but question, if you're 65, what exactly is the issue - are you retired? if not, you could be, right? lots of people younger and not retired quit their jobs to take care of their parents and yes, it does all boil down to the local - even the VA has implemented a consumer directed program through the local AAoA and dad was going to be one of the first ones on it, if his other VA program hadn't come through but it had taken a lot of persistence - and niceties in the face of their not being so - to get to that point; thankfully there were friends willing to help - have any of those? there is also a Senior Companion program; is there one of those in your area?
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God help you! There is no easy answer that I know of and desperately pray there are churches in your area that you may be able to ask for help. Even in a city your situ is hard. The help today can be just more problems which I found with my mom. They were as you say untrained. Many barely spoke English. One tried to boil egg in she'll with 1 inch of water in a frying pan. You tell them they shake head yes but understand nothing. Grasping at straws is about it. Money talks but I did not have enough. The only thing I can think of is to advertise in paper for free room and board for 30 hours a week help. Male or female. Maybe a retired medi vet or retired nurse who doesn't get much ss. You may they posting notice with VA. Local nursing homes, etc may have knowledge of others who retired but would be interested. Again local churches. You do not have to be a member to request of congregations free advertising. My mom passed a year ago February 22 4 wks from 101. I know your pain, exhaustion and fears. I am so very sorry. There is a website for support for you I think it is called Daily Strength just type in support groups and it should come up. Be sure you do background checks ......
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Having a source you can talk to and vent to along with responses and new friendships may sound dumb right now at your overwhelming exhaustion and frustration....but daily strength is just for you to use to not feel so alone like a new friendship. Use both of these sites if you can. Also anyone who read your letter and asks what is your issue has paid someone else and probably has never been hands on. You feel proud because you are a wonderful, caring, overwhelmed human who deserves praise not ignorance. Here is a huge hug and prayer....
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It may be tough but a nursing may be the best for both of you. If you cannot afford to get help to help take care of her then you may have to make some tough choices.
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