My wife and I recently had my mother, who has Alzheimer's, move in with us. Dad also had dementia, so two years ago, my wife and I moved a trailer onto my parents property, so we could take care of them. They lived in a small house next to our trailer. In October, they both caught covid (unvaccinated), and dad died. Mom went to rehab for a month, then came to live with us, because we felt it wasn't safe for her to live by herself in the house. The house has no heat, just a wood stove, so it wasn't suitable anyway. (Last winter was a nightmare). So it has been a roller coaster ride having mom living with us so far. The rehab said she was at stage 5 of the 7 stages of Alzheimer's progression. One big issue is that she currently does not have a doctor. A doctor has to send the order for home health care to the health care agency that her medicare advantage insurance will pay for. Seems no area doctors are taking new patients now. Also, I have no power of attorney (mom doesn't trust lawyers), but am going to talk to a lawyer next week about getting guardianship. We don't want to put mom in managed care, because she owns 8 acres of ground, (which our trailer is sitting on), and my understanding is that the property would have to be sold for her to qualify for medicaid. The local hospital has "in home hospice care", but the nurse that came by said that mom isn't "far along enough". She would have to be not ambulatory, and incontintent before they could provide help. My wife and I are stuck with one of us always having to be with mom, (I quit my job) so its really confining. My hope is that we can manage to keep mom at home so we don't have to sell the property and lose out trailer (its too old to be moved again). So, this is a long way of saying, I feel pretty lost right now.
Also, if mom has no doctor, how did she get diagnosed with Alzheimer's to begin with?? Who do you call when issues arise, or do you just keep taking her to the ER? I would say it's imperative to get online and find a PCP for her immediately. I would think the hospital social worker could assist you with that. Or the area Office on Aging.
With stage 5 AD going on, it's unlikely you can get POA assigned now because she's incompetent to sign legal documents. You'll be better off going for guardianship which can be costly and take time, however.
My condolences on the loss of your father. I wish you good luck trying to care for your mother at home and preserve the 8 acres of land she owns. You may want to rethink quitting your job and losing that income, though, not to mention paying into Social Security to insure YOUR retirement years are properly covered, financially. Keep in mind your mother's resources are intended to be used for HER care in old age. Quitting your job to preserve a few acres of land may be a disastrous financial move on your part. A chat with an Elder Care atty is likely your best move at this juncture.
That's something I'd be asking an attorney.
Educate yourselves about caregiver contracts if your Mother has any income to contribute to expenses or compensate you for caring for her.
Look into the caregiver exemption. This could work if you provide care that keeps your parent(s) out of a Medicaid facility for a specified period of time and live with them. You need to be able to afford the bills without her income if she ever needs a facility. I am working with the impression that this cabin and trailer are on the same lot in a low cost of living area.
Ask the lawyer if she might be able to do a POA at her best. Likewise a medical POA, etc. They should be able to give an opinion on your state’s criteria for competence vs dementia. If there is real money or competing heirs involved let them know.
The POA would be useful if you need to manage her property: rent the cabin or land, contract for repairs, …
Be prepared to make medical decisions consistent with the values she shared with you when she was able. Does no Covid vaccine mean no flu or pneumonia vaccine? What medications are for comfort and which for extending life?
Investigate what work you can do from home, what skills you can develop through formal or self education, what self help or volunteer activities you can fit in to build yourself up.
I am surprised that the Rehab would say what Stage of Alzheimer's your Mother has without her being tested by a Neurologist.
Isn't be best that your Mom has a village to take care of her? My boss' wife had Alzheimer's for 15 years, and eventually he needed to hire a day time caregiver to take care of her. He took over the caregiving at night. There were days when he came to work exhausted due to lack of sleep as his wife was up most of the night. Don't forget Alzheimer's/Dementia doesn't get better, it only gets worse.
Also note, family full-time caregivers up to 40% die leaving behind the love one they were caring. Those are not good odds. What if something happens to you? Chances are your Mom would be moved to a Nursing Home, and your wife would be without a husband.
If your mother in fact has Alzheimer's and not one of the other dementias, it can go on for many many years. A gentleman in my support groups wife is in her 20th year of Alzheimer's. He had to place her in a memory care facility 6 years ago when he just couldn't care for her anymore by himself as she was severely incontinent and was wandering. She's now completely bedridden but still hanging on.
Do you think you and your wife can hang on for another 10+ years caring for her?
You don't know what the future holds for any of you, so it's best to start getting your ducks in a row now. And quitting your job is only hurting yours and your wife's own future.
As already said your mothers property should be used for her care and not for your inheritance. The fact that at this stage your inheritance seems to be more important to you, tells me that perhaps you really don't have your mothers best interests in mind.
Your mother will only continue to get worse and you MUST do what is best for her.
Yet since OP didn't set things up properly from the beginning due to not knowing or maybe parents made promises without getting things in writing they are about to get screwed over and it's not right or fair.
Believe me them getting this small pittance of 8 acres with a run down house is not going to make a dent in the ridiculous government waste and spending taxpayers are forced to pay for against their will.
My evil child abuser FIL just has his umpteenth heart surgery courtesy of taxpayers since he is 80 years old. What a waste to keep that piece of garbage alive at the taxpayers expense.
My Mom owned 7 acres of of ground and it was an exempt asset under Medicaid. I had it up for sale but not sure if it had to be.
Guardian is going to cost you unless Mom has the funds which Medicaid will allow. To get guardianship you will need a doctor maybe more.
I think you need to talk to a Medicaid caseworker. Ask how Moms property comes in to play as an exempt asset with you living on it as their caregivers the last two years. There is a caregivers allowance but not sure how that works when u don't actually live in the house but next door to them. Make sure you make the caseworker aware that you quit a job and moved next door to be their Caregivers.
Unless the doctor in Rehab was a Neurologist, I would not take his diagnosis as ALZ. ALZ is very hard to diagnosis. Mom needs a Neurologist to correctly diagnosis Mom.
Really don't understand why everyone seems to want to just pile on to this poor person who is just looking for information and help like everyone else. Aren't we all here looking for help and support? It's not like there's a Caregiver Olympics and some medal for getting it "perfect," as if such a thing existed.
Good on you for *trying* so hard to take care of them OP. Maybe you didn't have all the information you needed, maybe you coulda / woulda / shoulda done things differently had you known this or that (I would have in my own journey) but YOU ARE TRYING. There are so many elders out there whose family abandons them or abuses & neglects them. You're doing your best. Keep it up, and don't forget to take care of yourself too. <3
In a lot of areas there are physician services that will make home visits. Check this out in your area..
Call former or last attending physician and ask for direct referral to another physician.
Call Alzheimer's Association and seek counsel in services, perhaps some adult daycare programs etc.
Yes, Alz. pts can be cared for at home IF and this is the BIG IF, you can provide the 24/7 oversight along with all that it entails. Hospice will be a help when you can get this on board, but even then you will need a physician referral order for hospice.
Seek an Elder Care Attorney directions also
It is represented that they are Medicare but, you are right, they are Medicare contractors and they screw people and the system.
Just know that Hospice will have a Nurse come 1 or 2 times a week (more often if it is medically necessary) A CNA will come about 2 times a week to give a bath, order supplies and maybe change bedding if there is time after other tasks are done.
You would get the equipment that you will need to care for her. (Sit-to-Stand or Hoyer Lift, appropriate slings, incontinent supplies, gloves, ointments, medications will all be delivered.)
But they can not provide caregivers that is on family.
A Volunteer can be requested but they can not do "hands on care".
For "in patient Hospice" the cost of "room and board" is not covered by Medicare.
If the patient is brought to the In Patient Unit for medical reasons that would be covered.
I was lucky enough to be able to care for my Husband at home through the 12 year journey of Alzheimer's / Vascular Dementia. But I have a house that was built handicap accessible and I did have caregivers that came in to help out.
And the important thing....my Husband was compliant. He wandered early on but that stopped and I did not have to worry about the wandering. He was a BIG guy and never put up a struggle. If he had I would not have been able to manage and for his and my safety I would have had to place him in Memory Care.
So..can an Alzheimer's patient be cared for at home until end of life...Yes. But it is not easy.
I also think you should contact another Hospice and have her evaluated again a person does not have to be immobile and incontinent to qualify for Hospice.
I fought with a medical supply co frequented here for a hospital bed via Medicare which we now have.
I help her up to toilet or with the bed pan and get her moving to her chair from her bed, wheelchair to the kitchen. I don’t have any help or if family does it’s disruptive to me and overwhelming. We are getting a geriatric/palliative care referral from her GP, but so far not a lot of other support. I’ve also called to find out about support services from a local Alzheimer’s agency as they have day care and I’m hoping to get backup. As her POA her doctors have been great with her health issues, but the home care has me in a maze to figure out and I’ll really on my own. Her Insurance via Humana has been good and we pay the monthly premiums for the best she can get.
She has insurance policies with paid in cash value for each of the siblings, and I’m considering cashing some of that in, including mine, to assist with her aid. My siblings will not need it. I have liquidated funds to help her and have done ok building my business after losing my job during Covid. I work from home and the flexibility has been needed due to her care. It’s a faith walk daily and since she has limited mobility, I don’t have to worry about the “wandering” issues too much.
Other than the hospital bed, she and I have paid for all supplies including incontinence pads, wheelchairs, ramp, wipes, etc. The oxygen and cannulas I do get via med insurance. Oh and pain? Dear God in my state she’s screened like a criminal for any opioid relief since she’s not yet on hospice, and I am looking to medical marijuana in my state next (all that’s available). We use strong hemp cbd which has been helping. Other than this she has over 20 meds a day.
I have said much, and it’s this portion of now getting some professional care support a day or even half day a week so I can attend the dentist, mammogram or other appointments that yes, I’m constantly juggling to get done. I just don’t know who I can trust and not sure I want all kinds of people prancing in and out of my house. It scares my animals and I’m just so stuck on these next steps. I want to keep her comfortable at home (she lives with me if I wasn’t clear).
Your mother needs a primary care physician. Go into her health plan's website portal to seek one. If there is difficulty finding a PCP, seek social worker counsel.
Once a doctor approves, you need to place her in care then get back to work. You future depends on it. Who will take care of yourself when the time happens?
You might not like this question: why was your late father and your living mother not vaccinated against COVID-19?? Medical, religious or other reasons?? It's not fair to place your mother and others at risk with this scary virus that will never go away. Like gambling chances.
Of course, vaccinated or not, people are still getting sick. Over 300 Covid variances exist in the world, and updating vaccines will never keep up with the ever-mutating variants and sub-variants Breakthru infections are happening with boosted individuals. However, vaccinations keep people out of hospitals and prevent death.
I say Covid will never go away like the flu will not. But Covid is entirely different than the flu is. I get flu vaccines annually and never caught that disease. So unlike Covid. You can get reinfected several times that will never go away. That explains the COVID-19 testing kits for our new normal.
however, as a retired heath care worker she supports the Vax and still gets boosted. The good news is she got Covid twice but is still going strong even with pulmonary fibrosis and cardiac issues.
The experts in this forum have helped me be a better family caregiver.
If your mom doesn't have a doctor, you might consider asking your doctor or your wife's doctor for assistance. Caregiving can be extremely stressful, especially if you are trying to do your best...all the time. Your doctor will be invested in relieving your stress and anxiety. If you do not live in an area with an aging population, you might explore online resources in areas where there is a large aging pop like California, Florida and Maine.
My mom is four+ years diagnosed with dementia. I left my state in 2021 to move in with my folks so I could help them age-in-place (in their home). After 25 years, I'm exiting my job on January 1.
Recently my mom's doctor asked my mom (and me and my Pop) a pertinent question; if my mom fell or got sick or had any kind of accident that required significant care in addition to what we're already doing, would she rather move to a place where she would receive 24/7 professional care, or would she rather stay home.
My mom looked at me quizzically. I answered for her.
Surprisingly, I said, "We want her to be at home." That's what I said, no matter how many times I've fantasized about the day when I could simply visit my mom in memory care.
My mom is incontinent. She cannot be left alone. She is mobile but we're looking at walkers to steady her increasing instability. Over 50% of our day is spent calming (regulating) her anxiety and distress.
We have a caregiver from an agency come to our home, once a week for four hours. I've learned SO much from her. We expect to increase her hours as our needs increase.
If you haven't yet, maybe you can consult a local caregiving agency. They will be the experts in your area, and they are usually pretty generous with information.
Thank you for loving your mom. You are an honorable son.
I am sorry you have quit your job. You need to look after yourself in your old age.
Good points have been made about getting your mum a doctor and about you living on the property and about hospice. Guardianship sounds like a good idea. You might check about Medicaid and the property when you see a lawyer.
All the best for what is going to be an arduous journey.
You will definitely need a good geriatric doctor, that you trust. And you need a POA. Thank you for being a loving son.
Good luck.
Many rules go by your state. Please seek help from attorney and Dr first.
People can and do take take of Alz patients at home until end of life. However there’s so many variables that may come up that can affect this. In home care may require special beds, lift devices, accessible showers etc. Are you and your spouse able to lift your mom…will you be able to lift her in a few yrs?
Also, if falls and broken bones are an issue, then you may not have a choice, and your mom will have to go into a facility at some point. And illnesses, like Covid, but also pneumonia, infections etc that may require hospitalization. Also, some Alz patients start wandering…day and/or night. Care will require 24/7. You eventually will need to hire help, but lots of people do need extra help.
Speak with an elder care attorney, most will do a 1 hr free consultation. Speak with her Dr, you may also want to speak with a social worker. You will need POA or guardianship at some point.
PhotoD1 needs to heed these posts and do some additional research. It is maddening how horrible this disease is and how unprepared most of us are to deal with it. They need to persue a conservatorship with the goal of helping mom and preserving her limited assets. This can only be decided by a court of law.
I *think* you will need to have a lawyer get things put in a trust. And I *think* there is a five year ‘look back’. Which means the powers that be will go back five years to review your mom’s finances. So, if your property trust is filed January 15th, 2023….if your mom is put into care before January 15th, 2028, that land asset isn’t yours and will have to be sold.
The lawyer should know the details of your state.
One thought I had when I read this - is your Mom able to ‘buy’ your trailer from you since it is her primary domicile now? Fair price - but same possible circumstance, if she goes into care before the five years, yes, you will lose your home.
As for your question of “can this be done”. Well, yes. But it isn’t going to be easy. Alzheimer’s (and other neurological aging diseases) patients wander. They can get their days and nights mixed up and go for a midnight stroll at 100 AM in 0 degree weather. A friend hated to put her mom in care, but Mom stayed up all night singing dirty Irish Sea chanty songs at the top of her lungs. Her dad left about 200 AM to go sleep somewhere else.
Incontinence and immobility are issues that are hard to describe until you are in the middle of them. My mother spent some money 4-5 years ago getting new carpet. She had horrible stomach trouble and didn’t make it to the toilet a few times. Even professional carpet cleaning couldn’t get those stains out of the newer carpet. And it’s obvious that it is a poop stain.
Immobility means that if your mom pees 3-4 times a night, you will be the one transporting her from bed to toilet. You’d be surprised how fast your lights get burned out without 4-5 hours of sleep.
My mom absolutely does not want to go to a facility. Without judgment, probably 90% of the reason is because she is a smoker and almost all facilities are smoke-free now. I get it, I have the same addiction. She appears totally competent when my siblings are around, but frequently interrupts my life for days/weeks of “help”. (I live three hours away). I don’t get along with my siblings, BUT I have also figured out my mom fans the fires of discontent with gaslighting. Because if we did talk, they would know a lot more of the true ability of mom.
I'm sorry to see your devoted, loving struggles trying to care for your mother at home. Your mother's level of care requires either professional help in the home or in a memory care facility, the facility being best way for respite care. If you are trying to save money for something like an inheritance from Mom, forget it. Your mother's own money pays for her care. You may even die before your mother does without respite care to relieve you and save yourself. Then any money left after her passing becomes meaningless.
There is a lot of neglect and abuse in these facilities. If at all possible do please try to find a way to make it work where she can continue to stay in the home she is familiar with and surrounded by people who care about her.
There are programs out there to help provide for in home care. We have one called IRIS that is wonderful. They will help provide the funds needed for her care at home. Family is also allowed to be caregivers (You can be paid too ..which will help provide for both you and your mom). Your mother can still remain in control of who she wants as her caregiver and give direction as to what she would like. They can also provide funding for the things she needs in the home. Any supports or therapy can be considered. Please look into what your state offers. There are programs like this in every state.
There will be a form with the Medicaid application (or a section) called MERP. It has to do with recovery of expenses after the patient passes away. State can file a claim against estate (what she has left over at death). Bank accounts that transfer upon death to someone will not be part of her estate because they 'passed' to someone. Medicaid (in Texas) will not go after property that a child also occupies if the child took care of the parent and kept them out of facility care. Ask your Medicaid office about that. You might also go to an elder atty and ask about this (they know rules in your state) and find out what needs to be done and if she would even be eligible for Medicaid.
Bottom line, yes, you can keep her in your home up to death if you are able to manage her care. Call the last doctor that your mom/dad used and explained the situation. They should not be considered new patients if they've seen him before