The insurance only sends a PCA and no skilled nurse. She has medicaid and will be getting medicare in a few months. I have been stuck taking care of her and cannot return back to work due to the unpredictable and unstability her health causes. I have turned down numerous job opportunities in the past few months because I do not want to abandon her in this vulnerable state. She has stage 4 metastatic breast cancer and is an outpatient. She has bilateral nephrostomy tubes that need to be maintained weekly.
She is completely against going to any nursing facility.
Your mom needs a "needs assessment" and case management services.
You need to return to work; savings for your own retirement is a huge issue here. I understand your mom's desire not to be in a facility, but unless she or you is independently wealthy, not working isn't really an option.
HOME CARE DOESN'T WORK
The insurance only sends a personal care assistant to clean and maintain the home. They do not do any skilled nursing. The PCA is not allowed to do any skilled nursing. Every time i try to reach out for help from social workers or her doctors/oncologist they keep trying to refer me to VNS. VNS however only comes out to teach a family member how to care for the memeber then they leave. They are short term care. They basically taught me some basic things and left. My mother has had the nephrostomy tubes in for over a year now. They have been conducting trials to see if she can urinate on her own but they still have not come to a conclusion.
You want your mother to receive the best care. You would also like to return to work.
No matter how much you want to help your mom, you can only do so much by yourself.
Take a step back so you can visualize the entire picture. Ask yourself important questions.
As wonderful as home health is for some situations, do you feel that it is the best solution for your mother’s situation? I don’t feel that home health is the answer for your mother’s situation.
I am not being critical of your actions. I know that you are trying to do the best that you can.
I only want you to look at all of your options and choose wisely for you and your mother.
Has your doctor’s oncologist recommended anything specific for your mom? Could you speak to her oncologist to see what others who have been in the same position as your mother has done?
Have you researched any facilities in your area? Are you staying with your mom 24/7?
If you cannot afford to be out of work, you will have to explain to your mom that you must return to work and that you will find a suitable place for her to be. You can then return to being your mom’s daughter and advocate for her.
I am so sorry that you are going through this. I know that it’s hard for you and your mother.
Sending hugs your way today. Keep us posted. We care and we are here to support you.
No one wants to go into a care facility. Also, this person may not even be eligible for placement. That would be for her doctor and insurance to determine.
May I ask a couple of questions? What were you doing for work before you became this person's care provider? Do you have an arrangement that you would be a paid caregiver to this person?
Actually, you can return to work. I'm going to assume that you live in the United States. There are about 350 million people living here also. You are not the only one that can provide for this person's care needs.
Do yourself and the person you're caring for a favor. Don't use their devastating illness as the reason why you have to turn down all the job offers you're getting. A person with stage 4 cancer has enough on their plate. They don't also need to also be guilt-tripped because their martyr caregiver blames them for why they can't take up a paying job.
Give the American Cancer Society a call. If this poor woman truly has no one they will help her. They have volunteers who assist people with cancer for free with things like rides to the doctor and companionship. I was a volunteer with them. So these resources exist.
If she's on Medicaid, they employ social and case workers too. Her doctor may even be able to get her in touch with a social worker to help her.
So tell her doctor that you're taking a job and will not be caring for her anymore. His office will contact social work to help her get some services.
Is she still being treated for or the breast cancer?
How did you end up "forced" into this?
Saying "no" is acceptable.
Whoever this "she" is to you, she's really not being fair to you expecting you to not work and instead care for her when what she really needs are trained professionals caring for her. The care she requires is way above your pay grade, and you need to be looking out for your future as well.
You need to tell her that as much as you care about her that you just can't continue on with her care and that she will need to go into a skilled nursing facility where she will receive the 24/7 care she requires and you can get back to just being the loving family member and advocate.
And definitely bring hospice on board when you place her as that will be extra sets of eyes on her and they will supply any and all needed equipment, supplies, and medications all covered 100% under Medicaid and Medicare.
Plus they will have a nurse come out once a week to start to check on her and aides to come bathe her at least twice a week as well. You will also have access to their chaplain, social worker, and volunteers too.
I wish you well in getting your loved one placed and in getting back to work.
If you do not have LEGAL responsibility for her care, your departure to resume employment is your fully justifiable right.
If you are motivated by remorse or guilt, be aware that guilt is a useless emotional trap that can not help either of you and may well result in hurting you. This is ESPECIALLY TRUE if you’re too s are being manipulated by others in her care constellation.
She is either cognitively capable of taking care of her own care needs ( it likely the case) OR cognitively unable to realize what she needs and how to manage getting HERSELF what she needs.
If you are actively giving care, you must decide what you NEED to do. Do some online research into geriatric cognitive loss and see what her financial situation will allow for a formal cognitive , which can be arranged for where she lives in some cases.
Remember, her welfare may depend on needs that cannot be met in her home. Remember also that you have needs that are not being met because of the situation you’re in right now.
Take good care of yourself. You’ve earned the right to do that.
Then depart for someplace else and get your life back. We are not required to sacrifice our lives in such a situation. We’re supposed to throw a life preserver but not go down with their ship.