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.
From what I read, having her reside at home is only do-able if you are willing to pay around $10,000-$20,000 a month for round the clock care. I surmise that you and your brother do not have the skills, experience, or time to manage the repercussions of a stroke, a person who will try / want to get out of bed (then fall on the floor and break a hip and back in the hospital / rehab), and seemingly anxiety, among other medical needs.
I encourage you to investigate why the nurse practitioner recommended Hospice. This is a major consideration. You need to know. In addition, I recommend you speak to the administrator or dept head. You need clarity.
- A person doesn't 'have to be' terminal to qualify for Hospice.
- You do need to know the pros/cons as they do not do anything to keep a person alive; they keep a person comfortable.
You will or could go bankrupt. You NEVER EVER want to (co mingle/) use your own income when caring for a parent with her needs. You keep all your monies separate. I realize this isn't black and white although it is REALLY IMPORTANT that you show a separation of her income / savings and not co-mingle it with yours. Medicaid, etc. need accurate accounting of finances to make their determination. If they determine she has enough $ because you are paying for it, she won't qualify.
My sense is that if you keep going as things are now, you both will be burnt out and overwhelmed not knowing what to do or how to keep going/managing after a month, or less.
You expect her to feel a major loss going through this.
When you expect behaviors (normal), then you can be more ... armed on how to deal with her reactions / behaviors.
You cannot change what has happened and how it will change her (physically, emotionally, mentally). What you can do is:
* Focus on the best care for her now and moving into the future.
* Listen to her; validate her feelings with reflective listening
* Do not get into any argument or discussion as she'll always want to be home.
- Be compassionate+caring WHILE setting boundaries, which are absolutely necessary. Be realistic in what you / your brother can and cannot do.
* You share with her how sad you feel, TOO.
I know these situations are challenging and difficult, esp when they seem to happen 'all of a sudden' and you want to do everything you can out of love.
Take a step at a time. Get all the support you can (MD, church, Stroke victim Association, neighbor, volunteers (try colleges-students in a nursing or geriatric Master's program).
- Talk to the social worker at the hospital where she was recently discharged. Ask her about hospice care recommendation, too.
* Don't wait until you are in more of an emergency situation to make needed changes.
Keep us updated on how you, your brother and mom are doing.
We are a community of caring compassion people who've been there - in our own personal ways. There is a lot of support here.
Gena / Touch Matters
Maybe even on medication offering nutrition support drinks
assess her medication and even have a social worker visit and assess mothers needs
I’d start off with her doctor
and they deal with this all the time- ask them for advice or referral to someone who can help
good luck
Whether you decide to put her in AL or bring her home, please know that HC will make her comfortable but they are not there to hurry the end-of-life eventuality. The teams we have worked with were most helpful and treated the patients with dignity. They answered our questions and, if they didn't know the answer, they had a network of professionals upon which to call.
Giving you more time to figure things out.
Is there any county assistance in your area, she needs to stay in a nursing home, because of the stroke and feeding tube.
If and when she gets better other arrangements can be made or she will have to sell her home for her care there or assisted living.
of coarse she may not like it, if she doesn’t sufficiently recover, that’s just the way it is. Get help from Social Networks in the Hospital, they can really help and have others speaking with your mother too. Emphasizing they know what’s best.
Also a good time to get help through your church so the pastor can talk to her too. Change is hard for all, stay firm and strong, blessings to all.
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.
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.
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.
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)
Many people don’t survive what happened to M. My neighbor visited a friend 2 streets away and died at the wheel when he turned the car ignition key to go home. While it’s a shock, it might have been the kindest thing all round. I hope that all of you are coping as well as possible, and send you best wishes. Margaret
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.
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.
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!