The homecare dilemma...only CALS can give meds

[Tomswife]

PALS needs meds, as needed. There is a schedule for some. But others are... as needed. The meds are administered via Peg or go under the tongue. The aides cannot do this.

I have been getting about 4 hours sleep for weeks. I am trying to find private pay nurse to work overnight. But there is medical staffing labor shortage.

I know this is a CALS subject but I thought others may be interested.

 

[Doing My Best]

Same problem here, the caregivers coming through agencies are not allowed to give meds. Or give him food through the g-tube, at least according to the agency we've been using. I am in the process of trying to hire a team of caregivers that I'll hire directly so they can actually do what's needed, including overnight shifts.

Kathy, I hope you find help ASAP - 4 hours/sleep for even a day or two is enough to make you miserable; I can't imagine for weeks. My RN daughter (who unfortunately lives on the other side of the country, but comes out to help every couple of months) suggested I advertise on Care dot com, and I've actually had really good luck finding qualified candidates, even though there's a medical staffing shortage in our area as well. I don't love the website interface, but I got it figured out and it's ended up producing some good options - retired RNs, a BS/RN student, people with years of experience in assisted living or skilled nursing facilities. I'm just beginning the process so haven't hired anyone yet, but based on my preliminary phone calls and interviews I'm feeling encouraged.

 

[lgelb]

If you hire your own aide and pay cash, they will do what you assign. The difficulty is the different levels of care that agencies use based on reimbursement. CNAs/NACs have mere weeks of training and that is where they top out, but the agency takes its cut. No one at the agency or plan level wants them to do more, because no one wants to pay them more.

 

[Tomswife]

One of the agencies here has 2 nurses who can fill some of the nights. So I think this is solved. I dont know what I thought hospice would be like, but I am still doing everything and they are consultants. It is helpful to have them on the phone though.

 

[KimT]

Kathy,

I'm so sorry. You have to find some way to get rest.

When my friend's Mom was on home dialysis and in her final six months, I helped find someone who was training to be a CNA at the college. She needed overnight work. She did everything, including hooking Nellie up for dialysis, meds, cleaning, toileting, etc. She worked for half the cost of an agency and did so much more. I just wish you could find someone outside the agency.

 

[Mary2]

We were on outpatient hospice for a few days and I did call to get an increase in the amount of morphine I could give. I was thankful I had someone to call that night. The increase in morphine helped Pal's breathing.

Many people benefit from the home health aide's that come in for outpatient hospice, but people with ALS usually have their own aides.

And some hospices provide respite. Sometimes by bringing the patient into a nursing home for a few days. Maybe there is a chance hospice would cover the cost of nurses for a few shifts in place of respite.

 

[Tomswife]

I did increase the paid aides hours. Hospice is adding a third day for the nurse visit. Meds have also be increased so it will be easier on Tom.
Thanks all.

 

[Firefighter58]

After 7 years of my wife taking care of me and getting me in and out of bed twice a day and in the house with me all day we decided to try a nursing home, it was an excellent choice. I have been in the home for almost a year now and it has been great. There is a nurse on duty 24 hours a a day so meds and my gtube are no problem 3 good meals a day prepared by a diation and a staff of PSWs take care of my every need and a doctor comes in every week . My wife comes in every other day to spend the day with me to do whatever we want ,and if we so desire we can get away for a few days. It has definitely made my wifes life a lot better.
Al

 

[Mana]

So glad to know that is working well for you both !

 

[SeaGunny]

Caregivers (hired). Can Not use a majority of equipment (suction/ Cough assist or BiPAP and wonder at the Eye Gaze stuff.
Most will wash your laundry, dishes, clean the floors but fail to dump the bed pan or waste baskets. Certainly NOT feeding the patient meds.

Care.com. I have seen some VERY qualified care givers for hire. Cheaper than the "store fronts". However, there is one slight problem. I am NOT a lawyer and certainly NOT an accountant and am NOT a Tax professional. Use caution when going this route. The money I spend on Care givers for hire easily exceeds my income. I have already gone through a big chunck of savings and now am tapping into my retirement accounts - and draining that fast! The care givers found at Care dot com are better qualified that those that are provided via the care companies. Nurses of varying stripes and qualifications can be found via the Caregivers for hire. Problem is. with around a $100 per hour price tag with a minimum of a 4 hour stint they are much like a plumber who shows up, turns off a valve (done in under 15 minutes) then charges one for a 2-hour minimum of $200! The other items is that these folks from Care dot com are not backed by workman's comp, other insurance, SS payments etc. so the job provider must take out taxes, pay the Unemeployment, Income taxes, etc and insurances - run a Payroll for all those hired in. Tomswife gets 4 hours of sleep in a 24-hour period (I can relate) and Care dot com and the IRS wants her to run a payroll department!

The CALS is going to want to use these expenses as a tax deduction. It then becomes problematic with the IRS (and the CALS / PALS.) The best scenario is that a CALS hires in a periodic care giver to supplement them and or their other support when things go awry. In short, this is for short brief periods. and is a one-off rather than a long term solution. These used to be "day workers" - often one could go down to the Unemployment office and someone needing help for the day would come in and say I need 2 people to help move stuff or help ??? . End of story.

POSSIBLE HELP SOLUTION: Locally there is a group AACOG (Bexar County, San Antonio, Texas) - an agency on Aging. When I called and explained my situation, they mentioned I would be getting a call from several "branches" of the group. One group has volunteers (unpaid aids?) who might come in a number of times during the week for "respite" care. This can take anywhere from 4 to 8 weeks. This type of help needs to be on a speed dial or 911 list. I am not sure what these folks can or can not do - probably like the paid aids, but every little bit helps. Sorry we are all going through this. Hopefully, you have something similar in your area.

 

[Firefighter58]

In my case of being in a nursing home we contracted a financial consultant who took our small investments and turned them into an income investment and that pay for the nursing home, professional advice is always available.
Al