Realistic caregiving for an elder

[rainingblue]

My mom (72 years, C3 incomplete) has been in a nursing home for a few years. My dad is hitting 80 years old. My dream was to have her home one day if we could afford 24/7 care. If I could afford to do that for her, is it best to realistically have her stay in the nursing home, and just hire companionship for her? I do not live near, my dad is not young, so we are all worried that if she were home, she may not have the care needed. But at the same time, home is where she will be comfortable.

Trying to see what options there are to toss around where she is safely taken care of, my dad's health is kept in mind as he is only getting older, but a balance to have them be as comfortable as possible while they are still here.

I don't know if it would make sense to have her home a few days, and then nursing home a few days... so at least we have that safety net of nursing home if home does not work out.

If she were home, do agencies provide some around the clock service of experienced CNAs and nurses for bowel care, catheter etc.? Is it safe to say we can depend on an agency to always have someone for us (worse fear is no one comes to work). My mom is not able to do anything for herself so it will be a true 24/7 help. After her accident it was always difficult for her to learn to do anything for herself. Then covid hit, everything was locked down for a year and she laid in be all this time - so she has no movement at all anymore neck down.

TIA!

[SCI-Nurse]

What is her insurance? If Medicare and/or Medicaid, no, she is not eligible for around-the-clock care from aides, nor for them to do bowel care, bathing, dressing, feeding, etc. which are not considered "skilled care" (which can only be done by an LVN or RN) such as vent care, suctioning, wound care, etc.

If she is on Medicaid, she may qualify for non-skilled homecare through a program linked to the Medicaid eligibility, but the pay is bad and lately it has been nearly impossible to find PCAs who will work for significantly less (with no benefits) than they can make at McDonald's flipping burgers.

(KLD)

[rainingblue]

SCI-Nurse Thank you for your reply. My mom has both Medicare/Medicaid. I was actually thinking about paying out of pocket to supplement whatever I can to have her home more.

But sounds like finding PCAs is tough . That is my worse fear, to attempt to bring her home and no one shows up for work, or someone quits and we can't find a backfill. I wasn't sure if going through an agency would help make finding help easier and better? I think at home she will need both PCA and LVN or RN.

Looking for ideas to see if I can somehow balance having her at home and the nursing home? Or maybe I am not making sense at all. I just want my mom to find a little bit of happiness again and I know being in a nursing home is really bad for her. She tells me all the time. But at the same time it is important she is safe (as well as my dad) and has the help she needs. I don't know if that just means stay at the nursing home and hire companionship? Let her have daytime home visits, so we hire a caregiver to help for the home visits?

[SCI-Nurse]

Agency staff are VERY expensive. If you are made out of money, go for it, but most people private pay for PCAs, with the rate varying from $18-25/hour. You might be able to do live-in, although they are even harder to find, but you would still need other people to give them at least 1 day/week off, sick days, and their own family emergencies. One advantage of live-in is that you can provide room and board in lieu of some salary. Do they own their home? Can they get a reverse mortgage?

Is she on a vent or have a trach? Why does she need 24/7 caregivers? Most people have a morning PCA who does bathing, bowel care, catheter care, ROM, dressing and transfers into a power wheelchair, and then a different person who comes in the evening to transfer them to bed, undress, skin inspection, help brush teeth, etc. Can your father not feed her and do cooking?

I doubt if you can take her in/out of the nursing home at will as they are likely to give up her bed and loose the Medicaid/Medicare authorization. Can you provide her care in an emergency? (KLD)

[vjls]

idea bowel care get her a colostomy its makes it so much easier. i know for me care give lot easier to get .easier on her tooo. does she have a sp. if you could get like a sitter that could feed visit read maybe light house keeping then maybe a couple hrs am and vening ready for bed and getting up. just thoughts

[SCI-Nurse]

Not an answer for everyone; and she would still need a caregiver to care for it, much less going through an elective surgical procedure like this at her age and level of injury is not without risks. Same with an SP vs. urethral catheter. (KLD)

[rainingblue]

SCI-Nurse My mom is not on a vent. My mom.... I am not really sure if she had some sort of learning disability prior? but she was never much of a person that could do things independently. If she was trained on a set routine or schedule, it could be done. So after this accident, it was nearly impossible to get her to do anything on her own to gain any skills back. I don't think she ever really understood what her accident meant. So she got into a mental state of not being able to do anything and relied on everyone, and uwilling to try anything. Would get scared if any routine changed, etc. And then with covid, when she just laid in bed for a whole year, she can't move at all anymore. Her whole body is completely stiff. So to drink water, someone has to do give it to her (because she was never willing to learn how to use accessible items). Anyways... that is why we would need 24/7. At night time, someone to give her water and turn her etc. I live 2000 miles away and it would not be easy for me to get there if there was an emergency .

Maybe I will call some agencies just to get some ideas and options. I always dreamed she could be comfortable at home someway somehow, but not sure if I am being delusional.

[SCI-Nurse]

If you are wealthy, you might be able to swing this. Otherwise, I really doubt it is workable. (KLD)

[cementhead]

Check with her local independent living organization. Each state has different programs and level of services. I believe there’s a Medicaid program out there called money follows the people. Some states will pay up to the cost for nursing home care for in-home care. Of course she needs to be up and out of bed sitting in the wheelchair. If you can get her to do this and she does not need the total 24/7 care. I would think her 80 old husband is capable of giving her a glass of water and a cup holder on a wheelchair.
A lot depends on her level of function. Can she move one of her arms? Yes she needs a lot of help but she should be OK sitting in her wheelchair watching TV for a few hours without having help. Pending on her level of need you can have a caregiver coming to the house for three or four hours in the morning three or four hours in the evening and three or four hours overnight and get it all paid through Medicaid.
maybe if you specify the state she lives in somebody on here can help find out level of services for you.

[rainingblue]

cementhead - Thank you. We did have an assessment pre-covid and recall Medicaid would cover some hours. So maybe if we feel it is not enough, we can supplement. I think my dad's main concern is what if no one shows up for work... and I do not recall if Medicaid would cover a nurse coming in as well to help do bowel care, catheter, etc. He gets worried about little things like, what if the catheter is leaking. Right now with nurses always on hand someone can look at it, etc.

[cementhead]

Here’s a website that gives state by state Medicaid information for home services.
https://www.medicaidplanningassistan...ased-services/

[hlh]

Is there any family living near her? There must be someone to help. You can't help much, unfortunately, from 2000 miles away.

How able is your father to coordinate her caregivers (hire/fire/monitor/make sure they don't steal etc..), buy her medical supplies, pay and (fight...) her medical bills, organize her transportation to doctor's appointments and implement all of their recommendations, order and manage all of her medications, and interface with Home Care agencies etc..? This is actually quite challenging work and can take a lot of time.

How much $ can you afford to pay out of pocket per month/year towards her care? It will likely cost many thousands of dollars.

Who will get up to turn her at night? It is likely to difficult for an 80 year old man to continue this safely. It is very expensive to pay someone just to do this.

Is there space in the home to house a live in caregiver?

What services is she eligible for from her state/local community to transition back to the home?

If you really want to try to do this, you would need to take a trip back home, have a family meeting with the entire family to discuss how much time and $$ every member of the family can contribute, and meet with the social worker at the Nursing Home and ideally, make an appointment with a social worker / case manager from the local/state Department of Aging to review all of the services/benefits she would qualify for based on her income. Then someone needs to sit down, and essentially do the math and figure out how to make it work. Everyone in the family needs to make a commitment to make it work. Kids will need to make a schedule for frequent home visits to assist or Dad will have a nervous breakdown. You could even try to find an elder care expert/case manager in her area that works privately that could help you do the calculations and possibly help coordinate things locally. This would not be cheap.

Yes, unfortunately good caregivers are extremely difficult to find, are very expensive (and they are not paid well...) and often very unreliable. Turnover of caregivers is high. We had problems with every caregiver we hired - and they were all from agencies. After the last one was asking to borrow my Dad's credit cards and worse(!), we gave up ,,,,.

My father is 80 and has a much lower injury than your Mom's. However, he has many additional injuries / medical problems in addition to his SCI. When my mother was alive, she was fantastic about helping with my Dad, but it was still more than she could ever do on her own. I moved nearby to help, and spent every spare moment when I wasn't working helping them, and it wasn't enough. I was exhausted, my job suffered. Then unfortunately my mother got cancer and passed away quickly. Your Dad's health could be equally fragile. I have been taking care of my Dad full time since then. There was no choice.

SCI is devastating for the whole family. I'm so sorry about your Mom, and understand your wishes completely.

[rainingblue]

Thank you.... I think this was a good reality check. My dad will not be able to coordinate all that stuff above. Sometimes I think he already has multiple nervous breakdowns because my mom's anxiety drives him to it.

[SCI-Nurse]

Unclear if it is you or your mother that lives in Seattle, but the program for in-home PCA care under their Medicaid program is called "Community First Choice": https://www.kff.org/health-reform/st...2:%22asc%22%7D

https://www.payingforseniorcare.com/...y-first-choice

I agree with hlh. I coordinated my mother's in-home care (private pay as she did not qualify for Medicaid) from 120 miles away, and it was exhausting. If we had to fire a PCA or they quit without 2 week notice that we requested, I would have to drive up immediately, and spend several days running ads, interviewing, and doing background checks, meanwhile filling in for the missing PCA. She had 5 different people working as PCAs at the same time in her last 4 years of life. One was live-in, and worked for her 13 years, but also had another full-time job (where she got benefits) and we had to give her some time off too. We did not turn my mother at night, and fortunately this worked for her skin and comfort, but she did have a bell she could use to summon the live-in in an emergency.

You can find a list of Independent Living Centers as mentioned above here: https://acl.gov/programs/centers-ind...cils-and-spils

(KLD)

[rainingblue]

That is exactly what I worried about... when there is no care, no one will be able to step in.