Finding full time home care for my mother

sarahjwalksarahjwalk Posts: 4Member
First Comment
Hi all,

A little background to my question.  I apologize if this isn't appropriate. 

On October 26, 2018, my 69yo mother began to experience neck pain as a result of a spinal hematoma from anticoagulation therapy. After an MRI revealed the bleed, she had an emergency evacuation of the hematoma with a C3-C7 laminectomy October 27, and woke up with tetraplegia. After an acute period in the ICU, she was released to an inpatient rehab. She went home December 20, and we began outpatient rehab December 28. She is currently in rehab three times a week working with a Zero G harness that helps her walk assisted, and we are down to 6% weight assist! She uses a manual chair and has gotten better with transfers, and we now use a pivot transfer. She has a neurogenic bowel and bladder, and we do intermittent catheters 4x a day as well as a daily bowel program. 

I have been with her since the injury and have been her full-time caregiver since December 20, as my father passed away three years ago from cancer (she was fully independent living alone before this). I have been lucky enough to be able to work full-time remotely, and stay with her and take her 70 miles each way to rehab 3x a week. She is not able to self-cath yet due to her hand/finger strength, or perform the bowel program. However, the demands of work are calling as well as returning to my life (which sounds incredibly selfish as I type it). I am trying to return to my home and work if it is possible in the coming weeks, while still planning on visiting each weekend and taking a week off here and there; I only live three hours away but have not been back to my home or to the office since. My brothers live in the same town, so they will be able to visit regularly and help. However, hands-on care has been my responsibility and she prefers not to move to one of their homes. 

We are trying to figure out a solution so that she can stay in her home safely and be able to go to rehab without me living with her, but I fear full-time care will deplete her finances entirely and I am considering leaving my job for a while, though that would be against her wishes entirely. She is making remarkable gains in rehab, and we hope to continue to see those gains and for her to regain her independence. She just needs time. She does not qualify for home health care as I understand it, as she is going to outpatient rehab. Living in a small town, there is no advanced gait training available so we must travel 150 miles round trip for an hour of rehab three times a week. We are exploring options, such as having a home health agency assist with the catheterizations and bowel program until she is able to, and paying an aide (all out of pocket) to stay and assist with personal care. She is willing to go to a nursing facility to avoid one of us giving up our jobs to help her full-time. I'm not sure what to do. She has Medicare and supplemental insurance, and getting information on Medicare case management has been difficult. Does anyone else have any insight into this? Is it possible to receive any kind of aid so that she can remain in her home and receive temporary 24 hour care without depleting her finances? Skilled nursing facilities run $6-8k/month and she needs to continue her outpatient rehab. 

Again, I apologize if this isn't the appropriate venue but I have had little time to research and I just want her to be safe in her home, with the appropriate amount of care, and be able to commute back and forth to see her. It has been four months, and I do not want to sell my home and move back or take FMLA, but I am willing to do that to ensure that she's safe while she's recovering. 

Thanks for listening. Any insight you have would be wonderful. 
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