My mother was admitted to the hospital on Friday November 15 for having a stroke that appeared to be a seizure to my brother who dialed 911. She was in the ICU for six days before moving to another room. I was looking forward to having some clarity in a scheduled meeting my brother and I had with a nurse practitioner about the next step for mom. She had mentioned about hospice care for my mother. Mom be antsy and fidgety trying to get out of bed. She has strength pulling and holding our hands. Mom shows alertness when trying to communicate with a slur. By the look of things, mom have more years left in her for someone to be speaking to us about hospice. That meeting left me empty with no answers. My brother is working getting her on Medicaid to help offset the cost of help. I'm thinking what would be best for mom. If we bring her home, she is home. I'm not sure if this is the best fit for her. Mom is going to need 24/7 care. Mom will have surgery of a feeding tube in her stomach; worried that she might try and pull it out and plus cognancies issues. In a nursing facility, she will receive 24-hour care, but she'll have a feeling of loss of independence that can lead to unhappiness. She'll feel alone for it won't be home for her. The one thing we can understand in mom's communication is when she mentions 'home'. The social worker explained that if we choose in-home care, there would be a nurse and social worker that would come by an hour a day, which I find is not enough time to spend with my mother's condition. Plus, telling me that mom do not qualify for long term insurance. So, my brother a part time worker who lives with mom and myself who's on a fixed income are having discussions on taking care of mom. My main concern is her nutrition, safety and her well-being; without us going bankrupt. We are open to any advice and suggestions you may have.
Surely someone at some point has discussed with your mom what she would want at this point. I have long had an advance directive that REFUSES outright any artificial feedings of any kind through IV, PEG or NG and refuses outright any dialysis, even temporary, as well as CPR and artificial help with breathing.
This is a decision that must now be made for Mom by her POA. I wish your family the best of luck, but this will be a slow torment of being agitated, bedridden, getting sores and possible complications of chronic diarrhea, etc. For ME, death would be a deliverance.
Perhaps the best thing for now would be for M to stay in the NH as long as possible, to see how she progresses. Your and your brother can each spend as much time with her as you can. If Hospice can help (though it often doesn’t provide much), and don’t think that means she will necessarily die in 6 months – some people stay on it quite a long time. This was sudden, and it is going to take time to find out just how bad the situation really is. In the meantime, use all the help you can get!
But…. While you feel mother has many years left, that is not the reality. Unfortunately, it is time to start wrapping your mind around some hard truths. She is not the same anymore and she can no longer be independent.
I think you are right to apply for Medicaid for her. She can be cared for in her own home. At least you can try it for a while and see how it goes. You can always move her to a skilled nursing facility for long term care if needed later.
I will tell you, the challenge is finding qualified caregivers for round-the -clock care. You may be able to find a good, home care provider service, an agency which will manage sending workers, and will pay them. Home & Community Based Services (HCBS) is a program through medicaid which could pay a family member or individual of your choosing to provide cares for her.
Before returning home, the hospital should transfer her to a skilled nursing facility which offers rehab, for short term. This is a step in the recovery process, as hospitals only keep a patient until they are "stable", but don't offer long term care as the patient continues to recover. The short term skilled nursing is the next step before going home. That could give you and your brother an idea how she is doing in that setting.
I wish you well as you go through this. I hope you will provide us with updates.
Your education... post hospital rehab can be 21 days if she progresses and up to 100 days on her Medical insurance. Read her Medicare rules because after 21 days, the cost will go up to 6000 or 7000 a month and after 100 days it is $350 per day. The feeding tube and her possibly pulling it out could also figure the revolving door back into the hospital and finding a decent LTC if she keeps losing her bed.
A person can remain on Hospice longer, much longer is some cases as long as they meet guidelines established by Medicare.
There has to be a continued, documented decline.
A person can be recertified so they can remain on Hospice.
My Husband was on Hospice for almost 3 years.
With Hospice a Nurse will come 1 time a week to check vitals, more often if that is necessary. A CNA will come 2 maybe 3 times a week to give mom a bath or shower.
The Nurse will order all medical supplies and prescriptions that would be delivered.
the CNA will order all personal supplies that will be delivered.
And FYI Hospice will accept a patient that has a feeding tube but Hospice will not have a feeding tube placed while on service.
Does mom currently have a Long Term Care Policy? If so it is the Company that holds the policy that will tell you if mom qualifies for the policy to start.
If mom does NOT have a policy there is no way you/she would be able to afford one at this point.
Your mom will continue to need 24/7 care.
You bring mom home and it is up to you, the family to provide that care. That means hiring caregivers for the hours that you need them. And that would be when a family member is unable to be there.
In home care that is covered by Medicare or other insurance is NOT going to provide 24/7 care.
The idea of that "team" is to teach you and other family members how to care for her safely.
If mom has dementia it is more than likely that she will pull out any feeding tube.
The only facility that would probably accept a patient with a feeding tube is Skilled Nursing
Usually the only facility that can use "equipment" to help transfer a patient is Skilled Nursing so if mom needs a Hoyer Lift that would be Skilled Nursing. (Hospice does provide that type of equipment)
To be frank, your poor mom doesn’t really have any “independence” to lose. Someone with cognitive issues, difficulties speaking, a feeding tube, and all the other issues related to her stroke, just isn’t an independent adult anymore.
It sounds like despite her issues she is currently still vigorous. You didn’t mention her age but what if her need for care goes on for years? What kind of care is sustainable for you and your brother to provide? Sustainable financially, physically, emotionally? Caregiving needs to work for both the caregiver AND the person receiving care. Love isn’t enough, unfortunately.
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