Home health aide question.

drew64

Hi. New to forum. We moved my mom and aunt from Vegas to NJ about 2 years ago. They live together in apartment but my mom has some dementia. She’s 88. A few days ago had a fall and broke her arm. In hospital for two days but supposed to be discharged tomorrow. Her dementia is getting a little worse as keeps asking same questions over etc. arm in sling for 3 weeks so difficulty doing all ADLs. She does have a long term care policy but has 90 waiting period. Want to do a home health aide. Wanted to see if anyone has had experience with any agencies in Bergen county area. We may try respite care for one week so we can figure things our. It’s a shame have to spend down all hard earned money just to afford assisted living. My mom made tow trusts for my sister and I 2 years ago but Medicaid can take that as well.

JMack88

I feel for you. My mother is 84. She had mild dementia, asked the same questions repeatedly but was able to carry on most of her activities although my sister and I would remind her to take her meds in the morning and make sure she ate meals at regular times. We also drove her everywhere.

Then, this summer just 2 weeks after getting to her summer house, I took my vacation to spend a week with her at the summer house while my sister (who is a teacher and spends summers with mom at the summer house) did her continuing education. The very first day I was there, mom fell and broke her shoulder and her cheekbone. Things went downhill fast.

The first week was hellish. The argument about calling an ambulance since she couldn't get up on her own and refused to let me touch her because of the pain she was in. The emergency room where she kept refusing to believe she'd broken any bones until the ER Doctor got up in her face and told her, "Mrs. ****, you have a broken shoulder!" then the overnight stay at the hospital because she got dizzy and nauseous when she sat up. The blur of the rest of the week where she was on Vicodin for the pain and an antibiotic for the cheekbone fracture and in so much pain she was delirious, raving, and I couldn't leave her bedside to even fix food and had to rely on Doordash in a really rural area with only three restaurants that would deliver.

My sister returned after a week, and was horrified at the changes in mom and the situation. Mom was stepped down from the Vicodin to Tramadol for the pain at this point. She had finished the antibiotic. She was still in exceptional pain from her shoulder. Then came the 2nd ambulance ride and the discovery she had a serious impaction from the constipating effects of the medications. After the Dr. removed the impaction, she was prescribed the stuff they cleanse your colon with before a colonoscopy. She had diarrhea for 4 days and after that she has refused to eat or drink anything more than 3 spoonsful of food or 2 sips of liquid.

We made it to the follow up Ortho and ENT appointments at local doctors and then were able to bring her back home. She will be following up with her regular primary care doctor and local Ortho and ENT doctors as well as doing physical therapy.

The most difficult part is that her mind has totally slipped into a much worse situation that we were dealing with before. Now we have to sit up by her bed all night to take her to the bathroom because she's a fall risk after having fallen once, and being off balance from her arm being in a sling, as well as the fact that after a month in bed and not eating anything she's become so weak she can barely walk although prior to the fall she would go out and walk 10 minutes a day with my sister. She can't remember that she's a fall risk and won't call us for help because she, "Doesn't want to be a bother." At this point someone has to keep an eye on her 24 hours a day, 7 days a week so she doesn't hurt herself by falling again.

My sister and I are also looking at home healthcare options because my sister has to return to work when school starts in her district and even though I'm working from home, my attention cannot be on mom every second of every day. Plus, I was recently told that I have to report to work one day a week so neither my sister nor I can be there on that day once my sister's school year starts.

We don't even know where to start. It is so discouraging. Especially since we cared for Dad at home and he passed away in 2018 and at the end was having a lot of the same issues with his cognition although he had Multiple System Atrophy, not a specific dementia.

Marta

It sounds as if your Mom will need memory care (MC) or a skilled nursing facility (SNF) - depending on her recovery from her injuries.

Step one is to see an elder law lawyer (CELA) for legal documents allowing you to act as your mother’s advocate, if you haven’t yet taken this step after your Dad died. This same CELA will help you with MEDICAID planning, unless your Mom has a long term care (LTC) policy. While waiting for the appointment with the CELA, start researching facilities in the area where your Mom will end up living, close to one of you girls.

I’m so sorry for this disaster! You girls are a team and together you can do this.

easy23

Ask the social worker at the hospital if your mother is eligible for inpatient rehab.That would buy you extra time.

drew64

She did stay 3rd day in hospital so eligible for sub acute care. This does buy us time to look at some facilities. Wish could keep her at home with an aide but don’t know how long would need aide during day. It’s just a shame all her hard earned money will have to be spent down for care. We started a trust but a little late. Still has 3 years left for look back period

Marta

You are having a difficult time, and I appreciate that. Twice you have lamented that her hard-earned funds will have to be applied to take care of her. Isn’t that what these funds are for?

harshedbuzz

A home health aide is typically the most expensive option for care if money is an issue. Dad's agency HHAs were over $30/hour 6 years ago in a lower cost-of-living area than Bergen County. That said, if she's not safe on her feet and can't remember to call for assistance, she may require a "sitter" paid by family in a congregate setting which would be even more.

HB

drew64

O her hard earned funds shouldn’t have to pay for getting care for the rest of her life. Her children and grandchildren should be able to enjoy some of that. Instead to get coverage you have to be broke

towhee

Hi Drew, I hope your mom is doing better. I sympathize with your feelings about your mom doing worse, that is hard. I hope she is improved so that you have a better idea of the care she needs. You said she had a long term care insurance policy- was she qualified to start coverage before her fall? If not, she might be now. Not because of the broken arm, that is considered short term, but because of the dementia progression. It would be a good idea to re-read the policy. The 90 day non-covered period is pretty standard I think, have you ever heard of an insurance policy that did not have a deductible? For the LTC policy my LO had there was also a 90 day period, but it was waived because we used their company nurse to develop a plan of care for their home health benefit (included in the plan) and several years later when they went to a facility there was immediate coverage. Talk to the LTC policy's benefit coordinator, it won't hurt to ask.

I am confused about why you are concerned about medicaid. Is the LTC policy a lump sum and you are worried it won't last 3 years? Does it only pay a certain daily percentage and you are worried she does not have enough income for the rest or that there are not enough of her funds left out of the trusts to last? I can see that happening if the policy did not have an inflation rider or it was only ever intended to pay a certain daily amount. I can see where a policy might only pay 70 percent of facility care, other income 20 percent, leaving you short and maybe ineligible for medicaid as well. It sounds though as if your mom got a fairly early diagnosis and that you did all the right legal things. I commiserate if you feel mistakes were made, however human beings don't have the power to foresee everything.

The one inescapable fact is that dementia care is expensive, however it is paid for.

You seem to be angry at medicaid and also have one of the common medicaid misconceptions. The following information is not aimed at you specifically nor is it meant to be political. Many of us depend on medicaid for our LOs care and if we understand how it works that helps us plan for that care.

Dementia care is expensive and getting more so. The cost of home health, AL, MC, and nursing homes is going up. To care for our LOs takes either "free" family caregivers, money for paid caregivers, money for facilities, or any and all of these at various times. We hand over that money to said paid caregivers and facilities. (which are getting ever more expensive) When we are tapped out (except for the spousal benefit) and can no longer pay for care medicaid will pick up the tab (for nursing homes and sometimes for AL and MC). In effect, they are giving us a loan. If, after we die, and our spouse who has been living in our home also dies, and the home is sold, medicaid asks for repayment of the loan. They do not ask interest. They ask only for the amount that was spent by them and if there is not enough they write it off.

So the actual complaint is why doesn't the government pay for long term care for us, and let us keep our money. Well, where does medicaid get its money, since very seldom do its loans get paid in full or even in part, and they do not get interest? Ours and our children's and grandchildren's tax dollars, that's where. Quite some time back we made a decision in this country to keep our taxes low, and one of things that does not get funded to the extent that other countries (with higher taxes) fund it, is care for our elderly. So we spend more privately. The way it is set up now, if you know to find a lawyer to help, and if you can provide for care for 5 years, and meet the other medicaid eligibility criteria you can keep a significant portion of your inheritance. To do this you almost have to start financial planning either before or at the time of diagnosis, and it is tricky because you do not know how long your LO can stay at home without paid care or how long at AL level before moving to a nursing home.

Could things be better? Absolutely. Personally, I would like to see some tougher regulations on nursing home monopolies, a less complicated medicaid process and the government sending you info about long term care every year starting at age 50. But right now we have to work with what we have, and being angry at the government does not help us plan.

Medicaid Planning Assistance – Helping Americans obtain the Medicaid long term care they require