I am a sudden and solo caregiver for my mom 92 and dad 81. He was diagnosed with liver cancer three weeks ago. At the time he was fine with daily activity but once I arrived a few days ago he has declined rapidly. He asked me to take him to ER for pain and they gave him morphine, ran tests, and released him. He has now progressed to completely bedridden and mostly incoherent. He has several tests scans and Dr. visits scheduled but I have no idea if I can even get him out of bed much less in a car. He screams just when I try to sit him upright in bed. I can’t just take him for a two hour test anyway since my diabetic mother is in bed right next to him. He was her caregiver until just a few days ago. I don’t know where to begin. He told me before he declined that he can get home health care but doctor needs to order it. How do I do that if I can’t get him out of the home? Thanks in advance for support and advice. I am trying to keep an eye on them both but he needs my help almost every half hour so I am sleep deprived and spinning. One of their neighbors has offered to sit with them while I try to get everything sorted but since it’s a weekend I am sure I can’t do anything until Monday.
“Thanks so much for the support. He does indeed hospice and when I called they were here within hours and he was pain free. Surprisingly my mom was doing much better when they arrived and while she still didn’t have strength to get up she did eat and chat. She doesn’t need pain relief as of yet but the concerns are with the mild dementia. Dad was the higher priority for today’s visit and it all worked out.”
https://www.hospicereport.com/how-for-profit-hospices-compare-to-non-profit-hospices/
For your mother, below are some examples of providers who do house calls in our area. Google... house calls, visiting doctors, etc. and hopefully you will find a service in your area to try. One thing to remember is even with Hospice, you still have the right to have your primary doctor involved in the decisions you need to make.
https://www.housecalls-md.com/
https://www.medicare.gov/care-compare/details/group-practice/6800994807?addressId=SC292036502CO111XXCIRX300&state=SC
https://www.schousecalls.com/
https://www.caregiver.va.gov/
If he has never used their services, he may need to be enrolled into the VA Health Care System. Whoever you talk to in that system should be able to help you through that process and maybe even expedite it for you. They often offer telehealth and home visits. You don't have to give up your private providers or have all his care provided by the VA, but it is the first step to all the benefits available... financial and supplies. They even have a hospice program (you have the right to change hospice providers at any time). Be sure they understand the seriousness of your father's issues and hopefully they will take good care of you during this time. The veteran is entitled to benefits as well as the spouse, so now is the time to try and get benefits for both.
Hospice will become your "go to" when it comes to medical care. A Hospice doctor can come to your dad but in most cases the Nurse that is assigned will be the consult between you, your dad and the doctor.
The primary goal will be to keep your dad as comfortable as possible.
You will get all the supplies and equipment that you will need.
A Nurse will see him once a week, more often if needed. The Nurse will order medical supplies, medications and equipment those will all be delivered to you.
A CNA will come at least 2 times a week to help with bath, shower or a bed bath and the CNA will order personal supplies.
You can also request a Volunteer that will sit with him while you run out to do errands or just get a break.
Hospice will answer the phone 24/7 and they will admit a person on Hospice on the weekend.
If there are sufficient funds, I might suggest consulting a geriatric care manager (GCM) to help sort through the options and help vet/hire home health help or find an appropriate placement. We have already had a preliminary needs assessment by a GCM. They are not inexpensive but may be worth the cost.
I'm glad to see in the comments that hospice is working out and your stepfather is getting pain management and care.
To answer your question on home health, just call the doctor and ask for home health to be sent to evaluate parents for care. Or call a home health agency and ask for their help in getting the order they need. If the home health company also has a hospice group that might be helpful. I found it to be.
Home health won’t have the drugs he needs nor will they be able to sit with mom. They are more to assist the doctors with visual observation and vital signs, a cna for baths and physical, speech, occupational therapy. They can also order mobile X-rays, needed equipment etc.
They provide intermittent skilled nursing. At present your dad sounds like he needs immediate pain management. He needs the ambulance to take him so they can assess him before movement and get him seen sooner than a walk-in.
Many doctors now do telemedicine appointments and can approve them for home health over the phone. If they have seen the doctor in the last few months, that may not even be necessary. I would discuss the home health for mom with them as well. Once they have orders they can help you determine next best steps.
So sorry this is happening. Let us know how it goes. We are here for you.
And the nice thing with hospice you don't have to wait until Monday to call as they are available 24/7, so I would put in a call today.
I wish you well in finding the right hospice agency for your parents.
It sounds like you might need home Palliative Care/Hospice care. I would contact a Social Worker and have the primary care doc have a home assessment by a nurse and bring on the troops.
You need every service you can get your hands on. You cannot do this solo for two aging people who are ill. Contact your health insurance company too and look into any VA benefits if your mom or dad was ever in the military during time of War.
Depending upon where you live in the country, you can have HouseCalls MD.
This is a fabulous service that most Southern states provide to their elderly. Usually retirement areas have a lot more services. I had to move my mother from one part of the country to another to seek better medical treatment. I have no regrets.
You are in my prayers...
I would call APS now and get their pointers for how to get placement care started here. If you are not POA but only next of kin there will be needs for emergency guardianship and APS may be able to help you getting this and give you pointers as for how to manage things.
I quite honestly cannot imagine a dual crisis of this type. You may need BOTH to go to the ER via EMS and not allow them home. They may need a dual placement by Social Workers from the hospital at this point. I cannot imagine how you will negotiate all the things here at once otherwise with absolutely nothing in place.
You may need to refuse to care for them and may need to allow state guardianship if they cannot receive care in the home. That would mean you have nothing to say about placement AND finances, but it would remove the load off your shoulders, which to be honest at this point seems to me insurmountable.
I wish you the best and hope you'll update us. This is unimaginable really in that you have TWO in crisis and nothing in place at all. And that ONE crisis is involving someone likely to be actively dying and in pain.
Calling EMS for both was my first thought as well but the nightmare of sending my dad home scared me off. Mom is combative about receiving care which is why dad was her caregiver. Thankfully for this forum I know she just has to adjust for her health and mine.