Looking for advice on home care

[rainingblue]

My mom suffered SCI earlier this year C3 Asia C and in a nursing home. She is 70 and my dad is 77. Kids all live far so it's really just her and my dad and my dad cannot care for her at home alone. But he goes to the nursing home every day to keep her company so that is taking a huge toll on him.

Would be best if my mom can be home, but home care will probably only be covered for a few hours. My parents cannot afford to pay out of pocket for a large amount of time. And my dad cannot physically care for her much either (he cannot lift her, etc).

Wanted to see if there are any ideas, advice suggestions on what we can do to get her home. We were thinking if she can get 6 hours covered, that can cover 3 in the morning to get her bathed and in the chair, and then another 3 in the evening to get her back in bed.

But what about the hours in between. My dad's fear is if she has a bowel accident (no one to help get her back in bed to clean), no one to help turn her at night etc.

[SCI-Nurse]

With a C3 injury, is she not on a ventilator?

If not on a ventilator, she should not need 24/7 caregivers, nor RNs or LVNs to provide her care. She may qualify for a few hours of skilled care through her insurance for things like catheter care, wound care, etc. but that would usually not cover what Medicare considers "maintenance, non-skilled" care such as transfers, bathing, dressing, etc.

Many people hire their own PCAs (personal care attendants) with their own funds. It is cheaper than going through an agency, and depending on your location, rates are usually $15-20 per hour. You can read many other posts in this forum about how to go about finding, screening, interviewing, hiring, supervising, and (when necessary) firing private PCAs.

Is she eligible for Medicaid in your state? If so, she may qualify for a Medicaid-waiver attendant care program. This may require a co-pay depending on their income. A social worker should be able to help you with this.

Can you get a mechanical lift for transfers? My father cared for my mother (with help from private attendants) until his mid-80s, and used a mechanical lift (although a ceiling tract lift) to transfer her without needing assistance. It is safer for both the caregiver and the patient.

Turns at night can be problematic. Ideally, a turning mattress can be used, but these are not cheap, and generally not covered by insurance.

Is she on a good bowel program? This will minimize the risks for accidents.

(KLD)

[rainingblue]

No she is not on a ventilator and she is on Medicaid. So we hope to do an assessment soon to see how many home care hours she can get. We've been told average is about 4 which is not much at all, hence why my dad is so worried about having her home. But it sounds like maybe Medicare can cover skilled care to have someone come to the house to help with catheter care at least? That was another concern.

Thanks for the suggestion on looking up threads about PCA. I'll look into that as well. My only concern was if not going thru an agency what does my dad do if someone calls out sick or doesn't show up?

She is on a bowel program that happens in the morning, but she still does have enough incidents where she is going a little in the afternoon or at night. So that part is the most worrisome.

We are planning to get a portable lift, but my dad does not see that he will be able to operate this on his own. I think in his mind he would be unable to put the sling on her (he does not have enough strength to move her etc). And my mom unfortunately is very dependent. She has not attempted to try and do anything on her own. But this is all pretty new, so quite an adjustment for everyone.

Thank you for the tips!

[SCI-Nurse]

I'll look into that as well. My only concern was if not going thru an agency what does my dad do if someone calls out sick or doesn't show up?

What we did was ask those qualified candidates for the position who were not actually hired if they would be willing to be an emergency back-up. Many did agree, and we provided them a paid training ship to learn the care that might be needed. Didn't need them much, as dependability was one of our major criteria for selection (and we checked references on this), but invaluable when needed.

She is on a bowel program that happens in the morning, but she still does have enough incidents where she is going a little in the afternoon or at night. So that part is the most worrisome.

A good bowel program should be fine tuned until there are no more than 2-4 accidents a year. Perhaps she needs to work with a rehabilitation outpatient nurse who can help her on this. Where did she go for her acute rehabilitation inpatient stay?

We are planning to get a portable lift, but my dad does not see that he will be able to operate this on his own. I think in his mind he would be unable to put the sling on her (he does not have enough strength to move her etc).

Different slings are easier to get on than others, especially if she is in a seated or semi-seated position. Does she have a hospital bed? Can he roll her side-to-side in bed? A floor-based lift is also much easier and safer to use on hard flooring (no carpet) so that may need to be altered in their home setting.

It would also be helpful to include in your profile the state in which your mother lives. This will help us with providing you information on resources.


(KLD)

[rainingblue]

My mom did her inpatient rehab at Harborview Medical Center located in Seattle, WA. Did not know there are ways to fine tune a bowel program though. Would that be more of fine tuning the time she does it?

To add, my parents are limited in their English, so I can see how finding a PCA on their own may be tough.

I am looking at options to move my parents to where I am in NY, but don't know how that will work with Medicaid, or how I would get her on a plane here. My dad has lost 20 lbs since my mom's accident and I'm starting to worry more about him than her. She's in a nursing home, but at the end, the care there isn't good. My mom is completely dependent on my dad now and wants him there 8 hours a day.

[SCI-Nurse]

Can your mother get outpatient care through the rehab center at Harbor View? Can she get additional therapy and consultation with a rehabilitation nurse and/or physiatrist there?

I would suggest downloading and sharing this document about bowel care with your mother. If you share with us the components of her bowel program (ie, diet, meds, timing/frequency, techniques, and equipment) we may be able to make suggestions.
https://pva-cdnendpoint.azureedge.ne...enic-bowel.pdf

There can be issues getting someone onto Medicaid in a new state. Many states have a wait time which can be 30 days or more, after establishing residency, before you can even apply. You can find additional information here: https://www.kff.org/state-category/medicaid-chip/

As far as flying, your mother can be transported to the plane door in her own wheelchair, the wheelchair gate-checked, and then be lifted (by the airport staff) onto an aisle chair, then into her seat, and reversed at the destination. She should sit on her wheelchair cushion. There is no additional charge for her medical equipment or supplies as long as they are not packed with other personal belongings. Carry-on anything detachable from her wheelchair. She should of course travel with someone who can assist her on the flight with eating/drinking, etc.. She would be first on, last off for most airlines. She would deplane the same way as above. Here is information that you may find helpful: https://askus-resource-center.united....chapter&id=83 (by the way, both you and your parents can join United Spinal Association for free, and will get New Mobility Magazine monthly in addition).

(KLD)

[rainingblue]

Thank you very much for all the info. This was very helpful and I will read up and digest.

[hlh]

Is there anyway you, and then your siblings, could take FMLA leave for weeks/months to assist your parents with this transition, whatever it may be?

It is a huge amount of time/work/learning to try to get through this period, and when you are older it is even more difficult.

My father was injured at 65, and my mother was unable to do much. She was completely devastated. She never could have done it alone.

The Nurse has excellent advice. But it requires a motivated, functional family member to do the huge amount of work to coordinate. It is more challenging if the spouse is in shock/scared/exhausted. And yes.... I also very much worry about the health of your father.

I took off time to help my parents through the transition, and moved there to help them long term. And soon after my father was injured, my mother was diagnosed with cancer and passed away.

[rainingblue]

Is there anyway you, and then your siblings, could take FMLA leave for weeks/months to assist your parents with this transition, whatever it may be?

But it requires a motivated, functional family member to do the huge amount of work to coordinate. It is more challenging if the spouse is in shock/scared/exhausted.

I'm sorry to hear about your mom.

Unfortunately I do not think any of us will be able to do FMLA . For me - single income family. Maybe I can do a week of PTO the first week she is home though.

And yes my Dad is frightened for her to come home. He wants her home, but so many worries. He is so exhausted already and at his age he wants to do nothing. My mom is not a light person either... probably bigger/heavier than my Dad. And she has always been dependent on my Dad (my Mom has never been an independent person... think she may have some learning disabilities and the language barrier, which does not help at all). So if anything happens to him, I'm not even sure what my Mom would do from that point on.

I've suggested for them to come move in with my family but we are 2,000 miles away. I don't know how Medicaid would work. It will be a huge commitment on both ends to get them here. And what if they get here and are miserable. My parents can be tough to please.

[Vindex]

I get roughly 12.5 hours per day for a c five level injuries 3 years ago, just through Medicaid. in Massachusetts. You have to fight for those hours and justify them to the state, however it is definitely doable. Do not despair. Hiring and managing PCAs for home care is not simple, no going to sugarcoat it, but it is easily done use resources like care..com Contact me with any questions, I would love to assist

[rainingblue]

Vindex, thank you very much for your response. I appreciate it!! I may definitely reach out with more questions as hiring and managing PCAs is another worry (e.g. what would my mom do if for any reason if PCA is not available, etc). Thank you!

[rainingblue]

SCI-Nurse I receive notifications when the responses come in, so always appreciate the feedback. I have not visited this website for awhile since the pandemic hit and my mother is currently in a nursing home that is on lock down with no visitors allowed (WA state). It has been emotionally difficult for the whole family. But always appreciate everyone's feedback here.

[Oddity]

Yes, with the site upgrade, notifications began working again, and by default are enabled (turn off in profile settings) for all members, even if they haven't been here in a while. If the email address they used to register with is current, and they never opted out of notifications in the past (unlikely since they didn't work), then they will receive a short email letting them know there has been a reply to their thread, or a comment on one of their posts. (We can also "tag" user names with the @ symbol in any post and they'll get a notification that they've been mentioned.)

[gjnl]

If your mother's bowel program is difficult to manage and regulate, takes a lot of time, and she has frequents accidents, she may want to talk to a gastroenterologist about a colostomy. An intestinal stoma is created during surgery and stool is collected in an external bag.

Many members of Care Cure Community have said they are life changing when trying to manage a challenging bowel program. Maintenance of the stoma and collection pouch take much less time than a typical bowel program and accidents become are minimal.

https://www.hopkinsmedicine.org/heal...pies/colostomy

https://www.ostomy.org/colostomy/

NL

[Random]

I have a lift sling that goes under my back and has pieces that cross under my legs, but does not go under my butt. That makes it much easier to get under me in bed, and on and off of me in the wheelchair. If you think this might help you I will look for a link.