My mother had a ischemic thalmic stroke back in March and had a trach, peg and ventilator. She also was diagnosed with expressive aphasia. She has been in hospitals ever since. She went from the ER, ICU, LTAC, Subacute and now Acute down in Southern california. The trach, vent are gone but the g tube still resides (not being used frequently but more so if she doesn't eat her puree meals by mouth. She also is prone to UTIs). She's making small gains with walking, alertness, talking, sitting on the edge of the bed and downgraded to thick nectar liquids. She stayed in the subacute for four months straight and it took a lot of advocacy/bribing/gifts to get her even considered for acute care and a lot of hounding the therapy team.
She's in a top acute intensive rehab but not progressing at the level they set in place. The doctor thinks she may have had mini strokes before in review of her MRI and referenced she has a brain of an 80 to 90 year old woman (she's 75). Currently she requires two people to assist her 24/7 (feeding, dressing, changing her, moving) So it's definitely a hard choice to bring her home given we live a far distance from our hometown in central California. So we thought to send her to a skilled nursing facility.
Issues are we maxed out our Medicare 90 days sknf and had to file for Long term MediCal but it's pending. She has a secondary Medicare supplement but it only pays 20% of whatever mMdicare doesn't. She's in socal now and we had to file in the county where her residence is up north near fresno. Also, a lot of sknf facilities won't accept her even though Medicare should pay for the therapy but room and board would be private pay until Medi Cal kicks in. We got referrals in socal but once we mention our situation no one calls back.
The only other option we have is to get trained on 2 person assist and purchase all our items (bed, wheelchair, lift, etc) and bring her home. The issue with this is the transfer (Medicare won't cover transport from hospital to home), home health (therapy/nursing agencies are slim in central valley and service not guaranteed they'll come to us), shifting roles (brother, sister and I would rotate), and my 76 year old father's frail body (has his own health/diabetic issues, angry, narcissistic and not helpful). We could try this out but my concerns are not getting the right care if we bring her home (first 6 months of stroke are crucial), pressure on the family, and not having the right equipment for therapy. Not to mention if something goes wrong medically.
I don't know what else I can do until her Medi cal is approved other than to bring her home. We could see how it goes and if something isn't right, send her to the ER and then see if we could get a referral to a sknf in the central cal region?
Please help us, I don't know what else I can do. This is a nightmare and this system is broken. I feel so helpless and it breaks my heart to see my mom turn into a shell of who she was 4 months ago (she was independent, driving, everything). I just love her so much and she's my best friend. Does anyone have any advice?
Thank you
I'm so sorry to read about your mom's stroke and the stress you're under. I hope this link helps a little:
https://www.dhcs.ca.gov/services/medi-cal/eligibility/Pages/Medi-Cal_CovCA_FAQ.aspx
Please try calling the local county office and hopefully they can make some helpful suggestions.
Thinking of you.
I am just giving you basic information. I suggest you contact a lawyer well versed in Medicaid.
I'm taking care of my Mom in her late 80's in similar circumstances.
(Only child - no family to help and no medicaid to help, either.)
Here's what I've done:
Brought her home in a private ambulance transport company. Found them by Googling the subject. It cost $150 to bring her home in a stretcher they provided.
The hospital bed was rented through Medicare. We pay $10 a month for it. The Hoyer Lift is also a rental, we pay $11 a month after her Medicare Advantage program pays the rest.
I bought a nice Wheelchair online from Walmart for under $200.
Her Doctors at the Nursing Home Rehab set up a Home Care Agency to come out for 60 days after discharge. She saw a RN once a week, and a Physical Therapist 3 times a week. This was paid for by her insurance. We're rural also, but an agency from another area contracts with local nurses & PT's in the area and they come out.
So, as you can see - it's not an insurmountable problem, just complicated and time consuming to set up. It's been done before by many of us.
We then contacted the Area Agency on Aging to see about getting respite for me. None has been available in our county, unfortunately.
So, I plod along each day - which is difficult because I was also in a wheelchair when she came home due to leg injuries. I am walking now with a walker, a year later. Fortunately, I can still drive.
My Mom is 100% bedbound and incontinent. I cannot operate the Hoyer Lift by myself due to leg injuries and cannot afford to hire assistance.
We keep the Hoyer Lift for the times I need to change out her mattress, or the private ambulance comes to take her to see a Specialist - as they won't lift her.
But, I have managed. It is very difficult to do, though. She takes up all of my time and energy, and this situation has slowed down my healing. It is my dream to hire an aide for one day once a month, but the minimum they charge out here is $200 per 8 hour shift, so I just do all of it myself.
So, yes it can be done. However, it is a sacrifice.
Think long and hard about what you're doing. Thankfully, you at least have family to help and Medi-Cal to provide services.
You need to think about each item to do step by step - as opposed by being overwhelmed by the entirety of the situation.
I wish your Mom well.
If you tell them that there is NO WAY POSSIBLE for you to take her home, unsafe discharge, they will help you. If they think that you are the solution, they won't help you. Don't be the solution, she needs more care then you can safely provide at home.
The other thought was to try and get a referral to a hospital with a stroke program since she has hospital days left. That's one other option I was thinking. about. Any thoughts on this approach?
She had gotten her second covid shot a week before her stroke. The only problem would be if a hospital would accept her to the influx of covid cases.
I took my mom home after a large stroke as well but long before her therapy was over (due to neglectful care here). It is a long road. But it can be done just not easily and not without a team.
She should qualify for in home care.
nursing and all therapies. They also provide a bath aide maybe a few times a week but the remaining care will be up to the family to provide. If your mom has SS I suggest it be used towards getting some help from private caregivers.
medicare cover DME equipment (I believe someone else quoted the small monthly rental fees (they vary) I assume by state and area or plan as my moms was a little higher. She also qualifies for a custom wheel chair (ask her therapist in rehab for a wheelchair assessment) Medicare provides one custom wheelchair (like once every 10 years). DME equipment can also send you home with one that the rehab writes up as a rental until her custom is made for her.
Many use private care and some use agencies - private care websites exist and even start putting it out to local friends for a caregiver.
Ask for a social worker to meet with they can provide you with local places in your area that offer help and services etc - Also reach out to her local Council on Aging - they may be able to help give you services she may qualify for.
You said she is still on the feeding tube - she will have to continue in home speech therapy and hopefully can get a swallow study done and be cleared for foods (my mom took over 6/7 months to be cleared for all foods) and has 2 years eating fine behind her - so some people do take longer. I have chosen to leave her peg feed tube in - as you stated they are prone to UTIs and having access to always provide her with extra fluids when needed is a major help when you keep the tube in - my moms drs agreed.
Keep coming back here for additional ideas as this place is a wealth of information and comfort.
Wishing you and your family the best!
Again I am not sure if she is able to travel in a wheelchair yet but we did rent the accessible van after we came home (for dr appointment follow ups etc).
With the DME equipment - she will qualify through Medicare for a bed - hoyer - commode - wheelchair etc - google DME a equipment Medicare and it will give you a list (also speak with the case manager at rehab as they will be the ones setting up all of this equipment for you) before mom goes home.
Also if she is still fed some through her Peg tube and isn’t fully cleared through the swallow study - they will also provide you with a company whom will come to the rehab and train the family on the pump feedings and set up all deliveries to the home etc.
Again this is just of you have to take her home.
Do not leave the facility until all equipment is at the home - including tube feeding beds hoyers etc.
If equipment isn’t received you can call Medicare hotline and report the “unsafe discharge” and you will not be charged and they will not release her until all her needs are set up. 🙏🏼