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Hi, so I recently moved my mother in law into my house. I have a 5mo baby, and a 1000sq ft house so its crazy packed and is getting to be a little overwhelming. Its me and my wife attempting to work, raise our baby, and now take care of a frail Mother.


My question is, when is it time to go to the hospital? She can no longer walk more than about 15 feet. She basically collapses onto the toilet after her 15ft walk to the bathroom. She is in constant agonizing pain. So much so, she can barely eat. She can't load a toothbrush, open her pill box. nothing, total full time assistance.


She has diagnosed stage 3/4 COPD, active Hep C, osteoporosis (-3.9t), severe anemia. Weighs maybe 80lbs now down from her usual 90. Shes on 24/7 oxygen. We also have reason to believe she has Multiple Myloma but when we brought that up with the doctor, he said he'd check, but he was more concerned about just getting sodium in her.


We've taken her to the ER a month ago, right before she moved in. They did some imaging but couldn't do much more because there wasn't much to fix. She was just in pain.


She has declined big time since. I'm worried that she should be in a hospital setting and that we may be hurting her more trying to keep her at home. But I'm also worried they're just going to turn us out again. Last week her PCP mentioned maybe doing a blood transfusion but COVID is making things tough. A big fear if we dont take her is I can't see her going a week without falling and hurting herself badly.


Anyways, any sort of advice would be good. We can't afford care that isn't done through insurance. But we are totally at our wits end and about to crack. This feels inhumane and dangerous. And deeply saddening


Thanks


-M

Imho, you may want to consider Hospice eligibility. Prayers sent.
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Reply to Llamalover47
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If she has Medicare and/or insurance, talk to the doctor about getting some home health assistance. Nurse can visit weekly (maybe more) and there is physical/occupational therapy that might help. Nurse can probably get you info on nutrition to beef mom up a little and help anemia.

Get her a gait belt (she wears around her waist and someone can hang on to the belt as she walks) if she needs assistance when walking. She cannot open the plastic daily pill sorting boxes? They are much easier than opening a pill bottle. You can also check w/her insurance to see if they will do pill packs for her meds. All pills taken at certain time of day are sealed in a pack together. A bedside potty chari (if she can manage a short transfer) may allow you to sleep at night without having to walk her all the way to the bathroom.

You can also talk with doctor about hospice type assistance and palliative care to help with her comfort. If she really needs to be in a facility for round the clock available medical care, the doctor can answer those questions, too.
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Reply to my2cents
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Have you asked about getting your Mom Medicare on the basis of total disability? If she can’t work she surely will qualify.
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Reply to Frances73
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my2cents Nov 18, 2020
With a disability determination, the Medicare won't kick in for 2 years after disability application date.. Or until you reach age 65. Medicaid is different, but is for people who never worked/didn't work enough quarters/earn enough. Medicaid starts when the disability payments start.
(I sincerely hope this discrepancy of when medical coverage begins for those who worked and those who never worked is fixed someday. A person who worked enough to get social security disability should not have to wait 2 years to get their health coverage when someone who didn't earn enough gets theirs as soon as disability is determined)
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Hi M, sorry you have your hands full for sure. You received so much good advice here already. Have you tried asking PCP for home assessment for pain and safety concerns? Nurse practitioner for pain management and weight loss concerns and Occupational therapist for mobility/safety issues? This might trigger some other available resources. During Covid more home visits are being done and maybe you could get someone in quicker than 2 weeks for PCP appointment. I would also place a commode near bed in the near term so she doesn’t have to walk to the bathroom and risk falling. Provide liquids for immediate nutritional needs which might be less painful than trying to eat, This sounds so overwhelming. I’m very sorry for all of you, I hope you can get some help soon.
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Reply to Sweetstuff
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It sounds like she would be eligible for Hospice. You would get help and equipment that you need to help her. Medicare covers Hospice so you would not have any cost.
That does not address the problem that you have with a house bursting at the seams and caring for 2 vulnerable individuals.
By the way if/when she falls call non emergency number and ask for a “lift assist” the Paramedics will come and lift her. If there is no transport to the hospital in most cases there is no charge. They are trained to lift someone without hurting themselves or the person being lifted.
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Reply to Grandma1954
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M - just a quick response regarding Medicaid. I don't know if Medicaid application is standard across all states, but in Illinois, when you do the Medicaid application there are boxes you can check off indicating medicals bills were incurred in the past 90 days. Be sure you (or a social worker) checks them. The form (or online application) will later ask for MIL's income for those 3 months. Simply fill in $0, as she is not collecting SS yet and her SSDI is pending. Make sure you are keeping copies of all bills and receipts for anything you have paid out-of-pocket. Try not to pay the new larger bills as they can be submitted to Medicaid. I am so sorry for your difficult situation. It is indeed very sad.
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Reply to Chicagoannie21
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My heart goes out to you. I watched my brother suffer and die from HepC. No cure back then. Thank God, there is a cure now. My brother ended up in an end of life hospice facility where he received wonderful care. He died peacefully.

You have so much on your plate! A new baby, a mom living with you. That’s an awful lot.

My mom has Parkinson’s disease and as most know, it is a dreadful and progressive disease that has no cure.

Mom would fall getting up to go to the bathroom in the evening after the doctor’s offices would be closed so off to the ER we went.

On one occasion, mom was there for several days. I explained to them that she needed more help than home health and the doctor ordered rehab.

Rehab in a facility helped tremendously, followed up by another round of home health.

She is now under hospice care and hospice does a good job of keeping her comfortable.

I simply couldn’t care for her anymore after caring for her for 15 years in my home. It’s exhausting!

No one can go non stop caring for someone without help. My siblings did not help me at all.

I waited on mom hand and foot. Mom is a perfectionist and needed so much care and there was no compromising with me.

Mom complained even though I did all that I possibly could and then some.

I learned on this forum and my therapist to set boundaries but it didn’t sit well with mom. She complained to my siblings.

My siblings took her side and criticized me. So I ended up telling them that they could take over her care.

She is now living with my brother and now and hospice has stepped in.

I am glad that she has agreed to hospice. She expected me to do it all as the woman.

She doesn’t argue with my brother as a man because she is old fashioned feeling that a man knows best.

She sees women as servants. Crazy, I know but we cannot change other’s attitude or behavior. We can only change our reaction to it.

So do what you need to do for you. Your mom will have to adjust.

I am so sorry that you are struggling with this situation.

Take care and best wishes.
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Reply to NeedHelpWithMom
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If your mom's PCP is part of a health network, I would start by calling his/her office, and ask if they have a care coordinator on staff or available within the network. My mom's PCP had one who called me (I hadn't known it was even a service they provided) and offered me any help I needed. I didn't really need her services - by the time she had reached out, my mom was already on hospice, and her care was coordinated through them - but it seems like someone like that might really help.

It also seems, especially when talking about elderly patients and diagnoses of illnesses, that one doctor "begets" another - ie: you see a cardiologist, who sends you to a pulmonologist, who sends you to a nephrologist, who sends you to a gastroenterologist, and so on and so forth, until it seems your life is one long visit to a doctor's waiting room. So the other option you might want to consider, if there is one available and your mom is agreeable , is to seek a geriatric specialist instead of continuing with her PCP. They seem to be better at narrowing down what's "necessary" and what isn't, as far as doctor visits and test, etc.

It's going to be difficult for you and your wife, especially with a 5 month old baby. Your first priority must be to your child and wife; there is no shame with admitting to yourself that you can no longer keep mom at home and need to seek a care facility for her. I doubt there's ever been an elderly person who, given a choice of staying home or entering a facility said "oh my, I'd much rather be in a facility than the comfort of my own home." When it gets to be too much to handle, please keep in mind that there are other options for mom.

I wish you the best.
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Reply to notgoodenough
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"...Can all of these diagnoses for LTC and rehab be done at the ER?..." Please don't treat the ER as if it's a substitute for primary care. No, they cannot make all those diagnoses in the ER. The purpose of the ER is to diagnose what is ACUTELY wrong, not what is chronically wrong. Next time she falls, call an ambulance and she will go through the ER. Once there, ask for both a case manager/social worker and a palliative care consult. Hospice is for people who have a terminal diagnosis, and it doesn't sound to me like your mother has one.
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Reply to NYDaughterInLaw
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MILadviceneeded Nov 15, 2020
Ok. I understand that. The problem is getting in to see a PCP or even practitioner takes up wards of 2 weeks. This *feels* like an emergency now. It seems inhumane to just wait for her to fall or choke to death. But I do appreciate the input, I'm taking any and all advice in.
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Does your MIL have an advanced directive? Does she now want comfort care until she passes? Are you her POA and what has her doctor told you about her condition and her prognosis going forward? These are the places to start.
No hospitals keep patients for more than a day or two now, and that counts true even if you have open heart surgery. One quickly leaves the hospital to either home, extended care in Skilled Nursing Facility, or rehabilitation in a Rehab or Long Term Care in Nursing Home.
However Mom has good reason to ENTER hospital through the ER with any of the above you mention, especially uncontrolled pain.
At the instant of entry and every time you speak with doctor or nurse after that, it is crucial that you tell medical personnel that you can not longer "safely care for MIL at home, and will not accept her back into your home". Those exact words. Ask for a social worker to "help us with placement." To "Help us with care choices".
If you do not have POA, this Social Worker can quickly make you "temporary guardian" for your MIL. Then she will find a facility now accepting people, which will be difficult for her in Covid-19 times, (and IMPOSSIBLE for you). She/he will help you negotiate getting Mom on medicaid to help in payment. Be ready to give them a five year lookback on Mom's assets and expenditures (2 1/2 in CA).
If you wish instead to research what hospice care is on the internet, speak with MIL and try to do this inhome you will have a lot of help with care in her last days.
Crucial is that you and your wife recognize and accept, with these diagnoses adn this weight you tell us about, that Mom is likely dying, and crucial also is whether or not you accept that, as going into hospice stops treatment toward cure. Hospice and Comfort care is what is given in a person's last days. If a doctor believes that Mom's Hep C can be cured (there is now medication for this, very costly and not always successful) and COPD treated. That is to say is MIL now "end stage" in her illness, or is there hope with treatment. Whatever the outcome in those predictions by the doctor, her care now is too much for you to accept her back home. Don't allow them to convince you they will help; they won't. In home care is basically paid by your MIL's own assets. Not many can afford this.
You have a lot on your plate. Contact your Mom's doctor. Make an appointment if you are POA. If you are not first get a POA if mom is rational and can give you that permission. Get the information on Mom's current condition and your choices. Make yourselves a list. 1. POA 2. Doctor appointment for prognosis 3. Hospitalization. 4. Social worker for placement. 5. Gather financial records.
Wishing you luck.
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Reply to AlvaDeer
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MILadviceneeded Nov 15, 2020
Hi Thankyou for the long response.

So the POA stuff, no we have looked into none of it. Mostly because this has come on in the blink of an eye and we're extremely busy even outside of this. But I will make it a priority, it seems like most people suggest this.

The doctor does think we can 'cure' her, or at least he did a few months ago. The Hep C treatment is possibly going to be Rx'd this week. Now if insurance covers it? Dont know.

The otseo is being treated by Tymlos. Though that can take years.

I'm not sure we're ready to stop care. I know MiL isn't. She is still very hopeful. The main issue is she is definitely not safe in our house, at least as of 2 days ago and unless she improves it will continue. My wife and I also are struggling with the responsibility of it. It's no ones fault, its just unfortunately and we would never leave someone to neglect.

Thank you again, this is all very helpful.
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It sounds like maybe your mother would be eligible for hospice. They provide (for us, anyway) a bath aide 5 days a week who will also change her bed, wash her hair once a week, keep her nails trimmed, and if needed, she can help with breakfast (instant oatmeal). If you don't already have a hospital bed, bedside commode, and/or over bed table, hospice provides one for you to use. They also provide diapers, bed pads, no-rinse shampoo and soap, and cream for the diaper area. Hospice is for those whose life expectancy is 6 months or less, and from what you say, she sounds like she would be a candidate. Our hospice nurse also comes twice a week, a chaplain comes once a week to read the Bible, pray with us, and gives communion. They provide a social worker to help work through your questions and give you extra support. Hospice is a free service provided through Medicare. You will still have to do a lot for your Mom, but it will make it a LOT easier for you. Please keep us posted!
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Reply to daddysfavorite
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M, I am so sorry that your family is going through this difficult situation.

It sounds like mom is in need of a good facility. They will need what's called a needs assessment. Some places do this themselves and others require a doctor or nurse practitioner to provide. It is a good place to start.

Unless mom has a long term care insurance policy she will have to pay out of pocket for in home caregiver. Her health insurance will not cover 24/7 in home care and will only cover rehabilitation care in a long term care facility after a hospitalization.

The easiest way to transition her is that you tell the hospital that she is unsafe to be at home and they will help guide you to getting her placed and then the facility will help you navigate Medicaid.

If you want to keep her home, I would ask her doctor about hospice. Then interview the ones in your area. Failure to thrive is a diagnosis that should qualify her for this service. It doesn't provide 24/7 care, it provides bath aides and a nurse in home to help her comfortably die. She will not be going to the hospital or doctors to receive curative treatment.

You have some decisions that need to be made. Has your mom ever talked to you about her end of life wishes? Has she prepared the paperwork that gives you the power to help her?

Again, I am so sorry for your family. God bless and guide you through this difficult time.
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Reply to Isthisrealyreal
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MILadviceneeded Nov 15, 2020
Hi Thankyou for responding.

We can't do any sort of out of pocket care at this time. We will be relying on Medicaid and her private insurance.

I will look into the hospital avenue and see if they can get her placed or point us in a direction.

We have not addressed really any of the questions you asked. Mainly because only 45 days ago this seemed like it would be treatable, but her condition has fallen off a cliff. But yeah I will look into addressing that stuff too.

Thankyou for your well wishes.

M
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You Mom must be young. Does she collect SS. Does she have any money? If not, you may want to apply for Medicaid in home care. She will need to be under a certain income level. Your income will not be counted.

You may want to ask her PCP about referring her to a pain specialist.

If this gets too much for you, you may want to consider LTC with Medicaid paying. This means Moms SS and any pension will go towards her care. The easiest way to do this is if rehab is offered the next time she is hospitalized take advantage of it. Have her evaluated for 24/7 care. If found she needs 24/7 care, then tell the SW that you can no longer care for her and she needs to be transferred to LTC. Then start the Medicaid application. A SW can help with that but be very involved with the process. Don't depend on someone else to do their job. In my state you only have 90 days once u apply to get what paperwork is needed together, spend down and get the person placed in a NH.
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Reply to JoAnn29
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MILadviceneeded Nov 15, 2020
Hi Joann Thank you for responding.

She is 64, yes. She has good insurance right now and will switch to medicare when she turns 65. She has 0 income so that shouldnt be a problem. Do we need a medical diagnosis to get inhome medicaid care?

We have applied for SS and SSDI but neither have been approved yet. So Im footing all of her bills and its not gonna last long.

She sees a pain specialist. She is currently on Oxycodone, Gabapentin, Spriva, Albuterol inhaler, Advair, BoneUp, and tons of Advil. They have no altered her Rx even though she is in more and more pain.

Im planning on calling our local Hospice in town who Ive heard good things about to see if they can counsel.

Can all of these diagnoses for LTC and rehab be done at the ER? because im guessing her next stop will be the ER, before we can get into her PCP. In fact, if the ER can make these diagnoses for her, Id rather just take her there ASAP.


Thanks again
M
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