Eight years ago my mom came down with transverse myelitis, it's a cousin to multiple sclerosis. I've been her caregiver since her diagnosis. She wants to be home, but she needs 24 hour care. So my aunt goes over in the morning, then I go over to her house after work. I leave my house at 4:30am and don't get home til 6:30pm or later every day. I feel as if I'm getting burned out, but then I feel guilty thinking that. My mom is very demanding and loves to be cared for by family. So if there is a time to place her in a nursing facility..I just can't think of doing that and breaking her heart. She has no money, she only receives a SS check a month. She has a house but it needs alot of repair. I'm the only child as my brother passed away 1 year ago leaving all the decisions to me. I'm so stressed and guilty feeling, what should I do?
You definitely have a lot on your plate. I am sorry that it is causing you such stress, and that is very understandable. It is important that you take care of your health.
Here are my thoughts:
At 95 year old, your mother is nearing the end of her life. Having a chronic serious illness just reinforces that her time is limited. I can understand your desire to honor her wishes, but it is becoming unmanageable.
You need help, and there is some available.
I would contact her physician and ask for a referral to Hospice care. I was a hospice RN at the start of my nursing career and I can tell you that it offers so much for people in your situation. There are resources for your Mother, but also for you and for your Aunt.
Hospice is a form of palliative care, here is a good explanation from the National Hospice and Palliative Care Organization:
Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well.
Most importantly, hospice services are covered by Medicare. She can receive help in her home, and many hospices will help with placement if the home is no longer a suitable option.
Please reach out to her physician, if for some reason he/she is not cooperative or easy to confer with, you can call a hospice in your area for assistance.
Here is a link to FAQ you might find helpful:
nhpco.org/about-hospice-and-palliative-care/hospice-faqs
You do not have to do all this alone, there are resources out there for you-please reach out and get the help both you and your mother deserve.
Best of luck,
Margaret