I got nominated by the hospice nurse to change five times a week she only comes out once a week to count mom’s medicine. I cannot tell you how many hundreds of dollars I have spent on supplies, diapers, wipes, tons of throwing away food. I couldn’t leave her in Virginia to die alone. I had no idea it would be so hard to get some type of financial help considering the 18 year old CNA that Bates mom once a week with my help, straight out of high school started making $18 an hour. I just don’t understand, it would seem like whoever is in charge, governors, congressman IDK wouldn’t want families together at a parent's end of life. Especially mine because she did not raise me. These last four months is the most amount of time I’ve ever spent with her, but I could not let her die alone as my brother and sister will not have anything to do with her and have written me out of the family because I decided to go get her.
You say in your profile you chose to go get your biological mom and take her home to care for her so she didn't have to go into assisted living, and now you can't afford to care for her?? Does your mom get no SSI income that she can contribute to her care & costs you are bearing? Did you not realize there WOULD be costs associated with her care? And no income coming in if you weren't working? How did you expect to support just yourself with no income, never mind your ill mother?
You can apply for Medicaid and get your mom placed in Skilled Nursing or even a hospice home where she wouldn't 'die alone' if you cannot care for her............you'd go see her, and there would be others in the SNF with her..............so that's an option. I don't know if there are state funds available to you in such a situation as a caregiver, perhaps someone else will chime in to let you know about that.
Good luck to you.
If she has no funds, you should apply for Medicaid NOW, because hospice or not, her condition will at some point need it. Bedsores need VERY SPECIFIC CARE, perhaps almost impossible to heal with even the best of home care.
I've dealt with at-home hospice many times with homecare clients and I can say from experience that they are completely useless as far as care in the home goes. One client I had for years went into hospice. They were supposed to be handling making sure the home was stocked with diapers and other supplies and told me not to go and get these things. Well, when we were down to the last diaper (and it was on the client), I asked when the supplies were arriving. The only way to communicate with the nurses coming was to leave them a voicemail which they would often wait a week to respond to. So I made sure the house was supplied as needed, and anything they provided was just considered extra, back up supplies.
You can't count on them to make sure the home is supplied. As for the CNA making $18 an hour, do you have any idea how much Medicare pays the agency who employs her for an hour of her time? You won't think the $18 is all that much in comparison.
I can tell from reading your post that you have a kind heart and want to do right by your mother in her time of need. She doesn't deserve your kindness but God bless you for it. I'm sorry to say, you will not get any reimbursement from hospice or anyone else for whatever money you're putting out for your mom.
Start paying for her supplies and your own out of her income.
Is your mother a patient of a particular hospice that has been caring for her? Did your doctor in this area your Mom lives in now order this hospice organization? It is the job of Hospice to see to the bedsores and wound care and in fact to prevent their happening. The development of bedsores is taken very very seriously by all those who regulate hospices and all other medical facilities. They are covered by medicare to do wound care for this, and to have wound nurses. If they are not doing their job, and only sending a Hospice nurse to count medication, then something is very wrong here.
6 months ago when you moved Mom did you become her POA? You will need to be. Is your Mom mentally well. Generally Stage II doesn't have hospice. Has the cancer progressed? Is Mom on O2 and pain medications? What doctor currently manages Mom's care.
If these are bad bedsores, at some point if you cannot get this addressed you will need Mom to go to ER and likely she will be transferred to SNF (skilled Nursing Facility) for care of these bad sores. You may have to call an ambulance and you should tell the Hospice if you cannot get care for her sores from them you will send her to ER and say they are not addressing them.
As to any payment, is your Mom on Social Security? If you are her POA you can arrange with one visit to Elder Law Attorney to have a care plan done for your Mom's care needs so that you can be reimbursed for all costs of dressings, and for her costs. This will be approximately 350.00 for an hour consult but worth it, and your Mom can pay for this. She can also pay for her own dressings. Her costs right now are not large as she is cared for by you. You should keep ALL receipts well documented in a folder for each month.
You would not be the first to realize that you are in over your head and have made decisions based on emotion rather than the hard facts.
it’s very hard not to.
Today you can reach out to another hospice company and check to see what services they offer. They aren’t all the same. There are many in your area.
Contact your Area Agency on Aging and see if your mom is eligible for services you weren’t aware of.
Check to see what you would need to do to be a paid caregiver for your mom. A lot of “ifs” here but if she is eligible for Medicaid, she might qualify for a part time caregiver. You might need to take a course. I’m not sure what the rules or. But start with contacting hospice and Area Agency on Aging to see what help is available. Let us know how it goes. We learn from one another.