My husband has been more restless than usual the past couple of days and has paced and paced as he tends to do when upset. As a result, he has had more falls than usual although none have resulted in serious injury. I received a call today from my case manager from the Area Agency on Aging who provides my in home help while I work. I was told that due to his falls, they had decided that he was no longer safe in the home, they are pulling the aides out and that they would help me find placement for him. I do not see how being in a place where the ratio of patients to aides is probably 10 to one, if not more, and restraints are not allowed, how the heck they can think that he is going to be safe. Does it make it better if he falls and kills himself in a nursing home instead of his own home? I am at my wits end. I can't afford to quit my job. Any suggestions
can you hire someone on your own? a family member for less? i dont see many options if you have to work and need govt assistance for paying for it. would he qualify for hospice with the falling? ask for evaluation! its only a matter of time he does hurt himself if hes prone to it often...i am so sorry. divvi
Edis, I apologize if you have explained this before, - but I don't understand. Were you paying the Area Agency on Aging directly for his care? I cannot imagine they would simply CALL YOU and announce that they were going to pull the aides out of the home, point blank. Nursing home care is surely more expensive for THEM as well as you. (Regardless who pays) I would have hoped they could have discussed this with his medical professional and perhaps there would be some drug that would have reduced his tension and becoming upset..and thereby...reducing his urge to pace around. There should be an intermediate step, instead of just bam! we quit - he's going to a nursing home. That just doesn't sound right and I would be very upset. Of course you are at wits end. Who wouldn't be?
i dont think area on aging pays for any nursing home care. they only provide the caregivers with some free assistance for inhome respite. if they feel their aides are not able to care for him they wont want the responsiblity of him falling on their shifts. they will prolly try to help place him and Ehamilton will have to pay or get him on medicaide. if it were me and he isnt qualifying for medicaide i would hire my own aide and use a wheelchair for him durng the day. it beats NH-they will strap him in a wheelchair anyway after medicating him so he doesnt fall there either. divvi
Edis-the COA is just covering its ass. By assuming care they are certifying that he is in a safe environment. A friend has her husband in dementia day care and they will not permit her to work unless he is in day care-can't leave him alone. His fall risk is great in a nursing home where the halls are too long and supervision isn't always the greatest. Can you find a small private care home where the cost won't be so high.
I may be making a mistake but I use a group of ladies who use to work for a Home Care Agency that closed up. These ladies are all members of a Ghana Baptist Church in the next town. Two were CNA's and the one has no certification. I hire them just like home house keepint. Addie comes 3 days/wk for 6 hrs. She is primarily hired to help entertain my LW. She also does light housekeeping, cooks lunch sometime, takes Carol to movies but does not do any nursing or therapy. I'm sure I could get her for more hours but can't afford it. I pay her $12/hour. I will upgrade to certified home care service when needed. Carol is in stage #6>>7. Bill
bille I think you are doing great. I also use uncerftified ladies I have known for years. A lot easier on my pocketbook and we really have no need of a CNA at this time. Falling and accidents will happen and it seems to me it happens more at a NH than at home. I will not hold them responsible for falls.
Let me try to put our situation in as brief a terms as possible. We have very limited resources. There is not doubt he would qualify for medicaid. But, we live comfortably. We only make about $2500.00 a month between the two of us (almost exactly half each),but we own our home free and clear, have little debt except for our car, and we live in a rural area where the cost of living is relatively low. But.......... isn't there always a but, 1. I do not want him in placement where I do not believe he would get good care. 2. I can't afford the car payment on my income alone if he would go into placement 3. If I would quit my job to take care of him, I would have no medical coverage and if he were to pass away before I am old enough for social security, I would have no income. Unfortunately, he refuses to do anything he does not want to do (like sit in a wheel chair) and at 6 foot tall and 200 pounds, it is pretty hard to make him do something he doesn't want to do. He got up in the night last night and fell in the dining room. Didn't really hurt himself, carpet burn mostly, but the bottom line is that I did not hear him, so tonight I will have to lock the bedroom door so that he cannot get out and as soon as he discovers it, he will stand and kick and pound it until he is exhausted and sometimes that takes a while. Speaking of exhaustion, that's me. I'm going to bed and hope I can get in a couple of hours sleep before he discovers that he is locked in.
Rural area, probably saying call your local alz. association won't help. Who pays for the aide now? Can you call them and ask them to give you a couple of weeks to arrange alternate care? and then look for someone who can come in (or maybe more than one person)? In this economy you should be able to find someone... Also call the doctor, emergency, and ask for more meds and advice. I know the drugging him up might make him MORE liable to fall.
Other than the falling, what is his stage, roughly?
Edis, have you discussed your financial situation with an elder law attorney? Because the "community spouse" does have rights to some of the income if the AD patient has to be placed in a nursing home, even if he's on Medicaid.
Three of the articles have tools you can use to locate financial assistance for which you are eligible (Federal, state and local), and the other has some useful information and links.
Also, go to:
http://www.elderlawanswers.com/
There's a dark blue-gray bar across the top of the page. Click on ElderLaw 101, and then choose "Medicaid Rules" and then choose "Medicaid Planning" from the drop-down menu (or use the URLs below to go directly to these pages). These explain which rules apply everywhere, and which can vary. Pay particular attention to the sections on "Protections for the Healthy Spouse."
Then use the "State Information" link in that bar to find the details that apply in the state where you live. There should be a link "Get Key Medicaid Information for ___" or something similar.
You will need an attorney's help in maximizing the protection of the assets to which you are entitled. The laws are many and complex, and they have a nasty habit of changing the rules frequently. Find two or three certified elder law attorneys, ask for a free initial consultation, and find the one you like best. You're not obligated to retain anyone you don't want to work with.
There appears to be a provision in the Medicaid requirements that would allow a community spouse to keep the income of the institutionalized spouse if their income level falls below a certain amount. In GA (my state of residence) that threshold is $2736.00 per month, other states may have a similar exemption but the amount may differ. This is known as the Minimum Monthly Maintenence Needs Allowance (MMMNA). You may very well fall under this provision.
Check with your local Alzheimer's Association and see if they have an individual on staff who can give you a trial or a pre-qualification run through your state's Medicaid requirements. This should give you an idea of what assistance you may qualify for before you actually make your application.
Edis, I have no real advice for you, but only want to tell you I am in your shoes, too. Sounds like our financial situation, too is similar. I have caught on that falls is the big trigger with the case managers that send our home aides. They have let me know in subtle ways that if there are "too many" falls, he will need to go to NH. So...with a degenerative nuero condition, along with dementia..we now lie. Our aides are great..will let me know of a fall or stumble and it goes no further. Luckily, there have been no injurys other than skinned knee or soreness.
Thank you all so much for the input. My husband in on a program here in PA called the PDA Waiver which is income based. We qualified for him to receive full time aides for the hours that I am at work (plus travel time) 45 hours a week. It is funded through the Area Agency on Aging and services are provided through the local Community Action. Our caseworker called yesterday morning and her exact words were " I apologize for calling you at work but I needed to tell you that Community Action if ready to pull their aides out and I want you to know that I will help you find a good placement for him" I lost my cool at that point and really didn't hear much of what else she said. I called back this morning and asked her how much time I had to make plans because I would not place him at this time and when the time came to place him it would be my decision, not theirs. Oh, they didn't give me a time frame, they just said that if he did not stabilize they would have to pull their workers. Why the blankety blankety didn't she just say that to begin with. He is stage 6/7. Incontinent, bowels and bladder, can not dress himself, bathe himself or brush his teeth. He can not speak and does not see or hear well. He still feeds himself with a little assistance and eats "enough" if not exactly hardy. The fact that he fell 3 times in a 24 hour period seems to be what brought all this on, and yes the doctors tell me that medicine to calm him when he gets to pacing (which causes the falls) will only make the falls worse. He has suffered no serious injury and the main aide that is here 4 days a week and I agreed today that "no injury, no report" so I guess that makes me a liar also but as Patty said "so what". I am calling tomorrow to begin to tour facilities "just in case". I want to keep him home until the end but I am not prepared to kill myself to do it so I know that I must make plans. The links provided by Sunshyne and other information on Medicaid laws will come in handy I'm sure. Gives me some idea of where to start. Thanks again.