I haven’t been on the forum for a while as Mom died in 2017. And, prior to her death we regained the love that we always knew was resident in out hearts, but were too stubborn to always express. She picked me to handle her affairs and we enjoyed such a healing experience together 9 days before her death🙏🏽🙏🏽🙏🏽
Today, I am inquiring for a couple that will be bringing their Mom home from rehabilitation in 20 days. She has vascular dementia due to several prior strokes and recently had another stroke that has impaired her speaking and swallowing abilities. She has a feeding tube and will likely come home with the tube and will continue to need assistance indefinitely.
The question: will home services automatically be provided? And, will these services be free or partially paid for by government agencies (Medicare, etc)? Just trying to help them navigate some of the questions regarding available resources.
The thing is that the couple is employed full time but work at home. So, they would require assistance with rehab, ADLs, feeding tube, speech therapy, etc.
Thanks in advance for your assistance. You were very helpful for me.
27 Answers
Helpful Newest
First Oldest
First
With my mom I had to get a referral from her doctor for home care, so her insurance would help. She has Medicare and Tricare for Life. I’m not sure which one pays what but I do know in my mom’s case her medical bills are completely paid. Thank goodness! Also see if the mom qualifies for Hospice services.... as my mom’s 24/7 caregiver I can definitely say that all help is welcome.... especially when dementia and Alzheimer’s is involved.
Talking with a social worker would be a good idea too, and maybe even the Alzheimer’s Association might be able to give some good advice.
Also I know that in the state of New Mexico the state pays the caregiver for their services. I believe in New Mexico you go through State of New Mexico Income Support Division for that.
I don’t know how long the process is but it is based on the mom’s income.
Hope this was helpful a little bit.
ADVERTISEMENT
They will both be working every day Monday thru Friday 8-5 (for example), so they will be unavailable during those hours. Then they have to sleep, so they will be unavailable for 3rd shift. This is so they can kept their full time jobs.
Now, if they work less than full time, possibly they can help out a bit. But given the above scenario, there are only a few hours a day that they are free and clear to provide care and still be able to function and stay sharp while employed.
Believe me, I tried it the other way, everything suffered including my job. I’m lucky I was still employed when it was all over.
My understanding is that Medicare will only pay for home care if there is a skill involved-skilled nursing , PT, OT Speech etc.
When the skilled care is no longer needed, Medicare stops paying.
1) As a married couple, are both parties in agreement that they want to fight for their loved one's recovery even with the toll it will take on their marriage and self-care?
2) What assets and funds does the mother have to setup and coordinate care in the home? If not known, start to identify them now.
3) Is a DPOA and Medical POA setup?
4) If they choose to fight and put in the work, do they have FMLA paperwork on file with their employers to take off as needed for unforseen situations such as a caregiver call-off?
Each state has their own State-issued fingerprint clearance process and registries for offenders such as nurse imposters and APS investigations.
For example, If you ever need to hire a caregiver in AZ outside of an agency, please do the following to minimize the chances of an abuser entering your home:
1) Require an AZ DPS Fingerprint Clearance Card. If the person doesn't have one, I recommend that you offer to reimburse them to obtain one (about $67). After the person gets their clearance card number, ask for it, and go to the following DPS website to check their legal name, expiration date, and status: https://psp.azdps.gov/services/fccFormTriage
2) Check to see if the person's name is on the AZ Adult Protective Service registry for any reason:
https://hsapps.azdhs.gov/ls/sod/SearchAPS.aspx?type=APS
3) Check to see if the person's name is on the AZ 'nurse imposter' list: https://www.azbn.gov/discipline-and-complaints/imposters
3) Make a copy of their ID
4) Require a CPR/First Aid certification card
5) Call references that were provided and verify names and relationship
6) Get at least two Emergency contacts and verify them
7) Setup security cameras throughout the house, with the exception of places where privacy is expected such as the bathroom. Cameras usually scare off many folks that are up to no good.
If you choose to trust an agency, please insist that all caregivers assigned to your home have an AZ DPS Fingerprint Clearance Card. The agency will tell you that those cards are not required and how they do an "extensive check" but insist anyways. Doing all of this is not going to stop 100% of the abusers, but you will ensure you have done your part to keep your household safer.
For those that think a nursing home can provide an abuse-free environment, think again. Placing a loved one in a nursing home is definitely not going to help avoid abusers - it actually increases the chances because of the many shift changes and high employee turnover.
According to the World Health Organization, rates of abuse of older people are high in institutions such as nursing homes and long-term care facilities, with 2 in 3 staff reporting that they have committed abuse in the past year. Source: https://www.who.int/news-room/fact-sheets/detail/abuse-of-older-people
Your friends appear to care about their mother, and most likely will do all they can to protect their vulnerable loved one.
Your friends will need to be serious advocates for their mom, on the phone and asking questions and generally being a pain until they get answers. Friends have told me that I'm too polite, and it's true. I'm fortunate that I have a good friend (a former boss) who is a PhD nurse/educator who knows what to do and how, and what questions to ask. An advocate is always a good idea.
So far I've paid out of pocket for some PT and OT help since Medicaid takes so long. I've also been able to obtain some help through Virtua Health System here in NJ, but again it took someone who knows someone to get the ball rolling. Medicaid will eventually kick in with what I understand is pretty extensive care - although I understand that it isn't open-ended: sooner or later we'll have to figure out how to extend it.
If your friends are going to be arranging all this they'll need to be able to speak to the insurance companies, Medicare, whoever, which may take some paperwork. HIPAA laws require their names to be on file, otherwise they will only speak to the patient which isn't always possible.
I guess the bottom line is: don't assume anything about her case or her care. Be sure you know just what kind of insurance she has and what it includes (or doesn't). Write everything down and ask questions. Be respectful but if you feel you're not getting the information you need, keep asking questions until you do. And don't be afraid to keep going up the chain of command until you're dealing with someone who can help you. My friend said she'll go as far as the CEO of the rehab where Chris was, and if she can't get satisfaction there, she'll go to the state Board of Health to let them know that we were left woefully unprepared for the type of home care I was expected to provide.
I would suggest seeing the rehab social worker immediately. Sometimes you need to really hound them, like park yourself outside their office until they see you. They tend to focus energy on people who are ready for discharge, so they’ll put other patients on the back burner. Also keep in regular contact, daily if possible, with the various therapists, because they drive the bus. Even within that 20 days, if therapist says patient is no longer making progress, they are out post haste!
Perhaps the rehab is part of a skilled nursing facility that they may want to look at, or explore other facilities. Of course the cost of SNF is out of sight, but the person would need to apply for Medicaid after spending most of their available cash. Of course, as mentioned previously, most states require a 60 month look back, and any unexplained chunks of $, or gifts delay approval by “x” number of months.
Re Your question about services being automatically provided, the answer is probably, but only temporarily. Usually, if warranted, the rehab will help develop a discharge plan that can include some therapies, nursing visits, and aides for hygiene. But all of that is temporary.
This is huge, but they need to get information about everything now. They are not going to be able to call their lives their own. It is lovely that they want to bring momma home, but they need to understand what is involved before committing to this.
I always thought that in order for there to be a safe discharge a Care Plan needs to be in place.
I would ask the Primary Care Doctor and also the physician who was caring for the person at the short-rehab place how this all works. In some States, Medicaid will cover homecare, however, every State is different. Not sure about Medicare if they will cover a rehab and then homecare???
You can't guess at these things. I would have a 3rd party attend the discharge meeting to make sure the dwelling has been modified BEFORE they come home.
(Railings in the shower stall, shower chair, shower nozzle, lifeline button, get rid of area rugs and throw out all step in shoes). Hospital bed, pillboxes, etc.
Make sure you have all the medications you need beforehand. The re-habs use their own pharmacy and there can be quite a price differential when you re-fill at your local neighborhood pharmacy.
Please Note: I have been reading up on the Mark Cuban CostPlus Drug Pharmacy just in case Mom hits the Donut Hole the last quarter of the calendar year.
You are a good friend to pitch in...
My Mom had vascular dementia and she eventually passed in her sleep. The physician I employed after a hospital stay was kind and gentle but direct. He suggested that we focus on quality of life, not quantity. If there was an event that would claim her life, it would have been allowed to proceed. She received hospice services but they terminated her within a week of her death stating she was expected to live. I was profoundly angered by that move but their interest was in staying below the radar of Medicare triggered auditing. Hospice was wonderful because it offered massage therapy once a week. That healing touch connected my Mom, who besides dementia was legally blind. So look at the service delivery of your local hospice. Hospice can be entered into if death is expected within 6 months. Depending on employer based insurance, some insurances cover in patient room and board for hospice. My father worked for General Motors and my mother had a year of paid room and board. My first husband died in hospice and my employer insurance paid the room and board for his stay.
Good luck.
For the kind of care this lady will likely need, over and above what her children can provide, will be paid for by her or her kids. And, it's pricey.
You can ask mom's doctor to order the speech therapy and some occupational/physical therapy (for upper body/lower body). Medicare pays for those. A nurse visit (probably once a week) can be paid by Medicare if the doctor orders it, as well
12. Again, if she was religious, or if the family has friends and relatives still alive, ask them to send cards, lots of cards! I think one of the hazards of recovering from traumatic events is the sense of isolation. Connecting with family and friends can help mitigate that.
13. If any neighbors have pets, ask them to visit (Covid factored in); the pets offer great therapy.
14. If she's able to get outside, even for drives, plan for short excursions. We stayed at my sister's house (she had died shortly before Dad became seriously ill) as the house was more spacious, stores closer, and as I learned, we had access to top notch home care b/c of the agency's affiliation with the hospital.
BTW, Dad was released from rehab in February, home care began in a day or so, and he was decannulated in June, after the speech therapist had concluded he could eat again, which he had been under her supervision, b/f she d'c'ed her visits.
There's no question this would be a challenging period in the lives of your friends and their mother, but it can be done. And I would think the bonding and new dimensions in their relationship could be beneficial.
Please share this with them, and tell them that (a) I don't for a minute regret taking on this originally daunting challenge, and (b) I felt it was the best thing to do for each of us especially as our mother had died the year before, and my sister 6 weeks before Dad became so ill. The bonding was so helpful for both of us.
Thank you🙏🏽🙏🏽
W/o knowing anything about the couple's home area or availability of home care agencies, or discharge recommendations, I would think that everything could be arranged prior to discharge to home. That's what worked for us.
I researched and contacted various home care agencies and chose one affiliated with the hospital at which the second extended care hospital was housed. I really lucked out; they were top notch, professional, knowledgeable and very helpful.
Before his release, one of the nurses at rehab taught me how to manage the feeding tube. At home, Dad had feeding every 4 hours, a more extensive one in the evening, and then a smaller one before overnight sleep. It was exhausting, but the assistance before rehab discharge and during home care was so good that we managed.
The speech therapist, somewhat at my prodding when she was ready to opine that Dad would remain on a feeding tube for the rest of his life, "re-examined" the situation, started Dad on a series of guttural sounds to strengthen his swallowing capability. He came home in February, was decannulated in June, and said he wanted to celebrate with a Big Mac!
It CAN be done at home, w/o assistance but your friends would have to really alternate thier home work session. You could also ask a home speech therapist to recommend someone to assist you. I was so tired once that I overslept and missed the first feeding.
I would recommend your share with your friends what I did:
1. Research extensively and find the best home care agency with a top notch speech therapist. Ours was affiliated with St. Joseph Hospital, but they also were in an area with top notch medical care. Jurisdiction might be an issue; fortunately we were in the service area.
2. They shouldn't be shy when asking about experience, especially whether or not the speech therapist is experienced with individuals on feeding tubes, speech exercises, and with efforts to recover speech. (Given the stroke, that might be a serious issue, so it's important to know what the speech therapists' background is.)
3. Get professional instructions on all aspects of care before their mother comes home. This could include respite care. It was exhausting for me; it might not be as bad if they alternate feeding episodes and get rest in-between.
The RN in our team was outstanding; she even stayed with Dad while I dashed out to do grocery shopping.
4. Clear out a closet or space for storage of the food cans. Dad and I were both surprised when the delivery man rolled in 24 cases of Nestle's ProBalance. I had to quickly clear out a whole closet for storage.
5. As part of the discharge planning, ask for a hospital bed. It's a lot easier for everyone. The various feeding equipment was put next to the bed and Dad didn't have to move around, and could nap at leisure. This was especially important at night .
6. Also clear an area when the mother will be sleeping to provide easy access for you and any visitors. If there's space near a bathroom, that would be good, as the feeding tube had to be flushed before and after.
7. Do a lot of advance grocery shopping or household chores prior to mother's discharge, as they may be just too exhausted to get out once it starts.
8. Do ask about relief after home therapy ends. You'll need it. The home care agency may have staff to do that, or may be able to locate some.
9. If their mother was a Veteran or if her husband was, there may be additional services. You'd probably be served best by contacting a local or State VA facility for more information.
10. Continued separately; out of characters.
By 20days do you mean the first 20 that Medicare pays for? If so, she could be kept longer than that if felt she needs more therapy. Medicare pays 50% for 80 to 100 days.
If it were me, I would ask for a 24/7 evaluation. If found she needs 24/7 care I may place her in skilled nursing where her therapy may continue and she may improve. I really don't see where 2 people holding down jobs can care for someone with these health problems. They will not have a life and getting outside help may not be that easy. SWs will try to get family to take responsibility for the woman's care and say there is help but that isn't always the case.
Physical therapy will only be provided if the doctor believes the patient medically needs it and is compliant and is making progress. The minute the patient "plateaus" the therapy is no longer "prescribed" and your friends very likely won't be able to get a certified PT in to do any continuing rehab. Been there, done that with my own family member with cognitive issues and non-compliance.
Medicaid (not the same as Medicare) is the state-run program that the mom will need to financially and medically qualify for. If she does qualify, she can get some in-home services provided through an Elder Waiver, but it likely won't be much (also been there, done that with my family member). But Medicaid rules and provisions are different in each state so they'd need to talk to the social workers for their county.
They need to be aware that Medicaid in most states has a 5-year financial look-back period on the application. They need to know what would disqualify or delay their mother, if they are managing her financial affairs (as this is easy to do and harder to fix).