My husband is on SSI for a very long time due to a AVM on his brain leading to brain surgery and the end results have to have a new skull cap poured in because of a hugh staff infection that almost cost his life set in. Leaving my husband blind in one eye and poor vision in the other. Deth in one ear and selective hearing in the other. He is on 500mg Diliatin per day. He has to fight seisures every day and has gran-mal seisures 1-2 times a month. He does not drive. I do everything for him. He does not or should not be left alone. I am not complaining now because I love my husband and would do anything for him. I just need to know if there is any care taker payments out there for me that can help us out a little. He is on SSI and I am forced to stay home with him.Any suggestions?? Peace and GOD Bless. Pam
I have found that there are more trustworthy and competent caregivers than not IF you go through an reputable agency. There are also video-cams that you can use for monitoring that I would recommend for piece if mind.
Payments are another story. It is a sad fact that there really is little to no financial help to keep loved ones in their homes. It never ceases to amaze me that the government, even some insurance policies will pay thousands of dollars in nursing home payments for inpatient care but is unwilling to pay a few hundred dollars a month towards respite care/relief for those caring for loved ones.
The caretakers here are paid minimum wage. They have no training at all.The agencies just want them to stay put and bring in money. The agencies and the state support each other's fault, so that they all can have a job. Much fault is with the state legislature, for not allowing higher wages.
The caretakers know nothing about health or sanitary household conditions. They damage items in the house.
In our state, medicaid pays for a caretaker if income of the patient is below about 1700. per month.
aaThe cameras are a great idea, for patients who are not able to monitor the workers.
Again, I think you can get some help, but you will have to do a lot of supervision, unless you find a rare, responsible agency. The best deal seems to be finding your own worker, putting them with an agency, and go through medicaid if you qualify. You can even reduce their hours on a confidential level, so that the result is higher wages. People will work temporarily for minimum wage, but not for long.
I don't know what state you live in but the problems that Vision reports are not the norm in my state. Our state (medicaid) does not pay for an in home care taker, ever.
Medicare will provide short term (usually 90 days) health care monitoring by health care professionals if you qualify. These agencies are highly scrutinized by Medicare and their standards must be high. No one is paid minimum wage. They will also take private pay or insurance pay patients.
Vision, I am glad I do not live in your state!
The program I speak of is designed to keep people out of nursing homes. Not all agencies participate in the program.
To qualify for this kind of home care, the patient's income can be about three times higher than the ceiling for other medicaid services.
The services are free for the patient, and up to 40 hrs/week can be provided.Untrained workers. Minimum wage. My friend has a nice worker right now, who has medical assistant training. She has had 2 nice workers in 3 years. Workers turn over very quickly. One "care" person broke her arm months ago, and she still does not have use of the arm, due to rotator cup complications. Many other negative incidents--stealing, trying to con the patient, exposing the patient to very dangerous situations.
She does have some good help now--for the past 2 weeks.
Is the medicare program you are referring to the one that send an RN to change bandages for surgery patients, for example, and also for physical therapy? Since Sailfish honey's husband is on SSI, does her description of his condition make him a candidate for the services you described?
Good question Vision. What he would require is an medical incident or a hospitalization to qualify, basically a change in condition. At least that is my opinion and experience.
My father is eligible to receive Medicare Home Health Care (lives in my home) for 60 days. Yesterday he was re-certified for another 60 days. Medicare will not continue this forever. What has been suggested is after this 60 days he be transferred to the Hospice Program. I have been out of this type of nursing for some time and was not familiar with the new Hospice Program. I thought it was for ppl that had just several weeks or months to live. The requirement for Hospice is a DX of an end stage disease or condition. In my father's case he has end stage lung disease. He could pass on tomorrow but he could also be here another year or possibly two.
I don't know if Sailfishhoney's husband would qualify for Hospice or any other program but it never hurts to look into eligibility. They are federal so it dos not change significantly from state to state.
I learned that any medications related to the illness that is deemed "end stage" is paid at 100% through the Hospice Program. There are more visits and care allowed and several other similar benefits. The agency that has been coming to our home to evaluate and monitor my father has been wonderful. They respect him and have helped him greatly with pain regulation and adjustment. Sometimes she just ends with chatting with my father and reminding him that he "makes the calls."
Yesterday the RN cried with me when I said it was tearing me apart to watch my formerly stout, strong, wise and proud father deteriorate and lose his independence. So I do know there are good agencies with competent and qualified professionals out there. This is the same agency that I had for my mother last year when she had an extensive heart surgery and came to my home for 4 months to monitor and assist her with recovery and rehabilitation.
A discharge social worker in a hospital of the agency in her state that is responsible for aging or social services of her county should be able to inform her of any available services.
However though he is entitled to some home care benefits I am entitled to nothing for the care that I provide him, which is 24/7. That was Sailfish's question.
Blessing to all of you caretakers. I walk in your shoes too and know how very difficult the journey can be.
I understand Sailfishoneys question now that you have explained.
I am so moved that your father is receiving excellent medical care, and that you and your father are getting support. I am also moved by your taking care of your father.
My mother and I did not have a good relationship, but I would have seen to her every need, if she had not had excellent help. I would go to the hospital to spend the night in her room, even though she had not treated me well--ever. I needed to feel that I was doing everything to give her comfort. Even if she rejected it, I had to make efforts to extend additional help and support. She suffered psychologically at the end, and she was also in pain. Even though she was not good to me, I always had respect for her welfare. It was very painful to see her suffer. She, like your father, had always been strong.
My good friend recently lost her mother at 93. They brought her home from the excellent nursing home, the last weeks of her life. They really believed that she wanted to be there. My friend had cared for her at her home for about 20 years. Her mother did very well until the last six months of her life. My friend retired at that time, and she gave care 24/7, just like you. One of the reasons that she is my friend is because of how she has cared for her mother. Her mother and her were very close.
I think she will always value the experience of taking care of her mother.
It sounds like you did everything you could for your Mom, in-spite of the fact that she was not always supportive to you. Unfortunately my mother and our relationship sounds very much like yours and your Mom's. I have been caring for her about 60-70% of the time in my home for the last 15 months. My siblings have had her the remainder of the time. Two weeks ago I gave up her care because I could not care for both of them and this has been Dad's home for five years. (I'm disabled myself) She is extremely ungrateful and difficult to deal with or care for but that's another story, one I may post as guilt is eating me up.
My Dad (also my friend) is failing fast. Last night he fell for the first time. His once 6' 5" height is now just 6'1" and his 185 lbs is now down to 155. He is still extremely difficult to pick up from the floor. Though we have wonderful support once a week there is no one that can help with his care. I know that I am not the only one that is a constant caregiver and it helps to know there are others. I am not that all that old but I have a lot of physical pain and limitations due to a MVA near 20 years ago and finally had to give up my career in June of 08. My limitations adds greatly to the difficulties in caring for my Dad.
Your friend sounds like a jewel. I have never thought of the possibility that she chose. It was brave and loving of her to allow her Mom spend the last weeks of her life at home with her daughter. How inspiring!
But yes there are wonderful agencies out there. I'm sure there are a few that are not so wonderful. And even the current agency we use has a RN that is not warm and pleasant. I just requested that she not come to our home again.
But unfortunately there is just no re-numeration for caring for those that we love, at least none that I am aware of.
I regret to hear that about your situation, and your dad's situation. It makes me very upset; it could happen to any of us. I am also disabled, but I have no loved one that needs care.
I do not know what state you are in, but the state department that handles cost-free caregivers in my state the Department of aging and disabilities. These people help with housework, grocery and pharmacy shopping, giving medication, bathing,etc.
You sound very knowledgeable, but I just wanted to make sure you had this info about my state, in case it could help.
Thank you Vision. I live in Wisconsin. Apparently once a person is on hospice all those cost-free (to the patient) services are available. I have checked and there is no cost free care giving, housework, grocery shopping, etc for those that cannot pay in this state. It would cost $30.00 an hour to have someone come sit with Dad or $50.00 for half a day if I took him to a day-care center. But I would have to haul oxygen and medication and the trip to and from would be difficult for him, impossible some days.
Mind you I do all the grocery shopping and such things as this is my home....but sometimes I make two and three trips a week to either the pharmacy or taking my Dad for medical care. It would be wonderful if someone would just take care of those pharmacy trips. He's on so many meds and their are often changes or increases. We live 12 miles the closest clinic and pharmacy.
I'm sorry to hear that you are disabled also. I know how very trying that can be!! Thank you again for your suggestions.
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