Advice on caregivers schedule for PALS living alone

[Fusia]

I am a widowed PALS living alone. I was diagnosed in August 2019, currently both hands are not very functional, both arms are very weak, and back is very weak. It is getting more difficult to handle a lot of personal care on my own, including showering, getting dressed, and eating. I think I've done a pretty good job of adapting how I approach things, using adaptive tools as much as possible, and finding new ways to do things - however, at this point I realize it's no longer enough.

I have had a caregiver coming in for quite a while, to prepare meals ahead of time, shop, and help with errands - about 16 hours per week during the day times. I'm now looking at changing the schedule to have someone come in earlier in the day to help me get ready for the day and get breakfast, then someone come in later in the day to help with dinner and prepare for bed. I realize that over time, more and more caregiver resources will be needed.

I would be interested in hearing from other PALS living alone (or anyone that has advice) on how their caregiving schedules have evolved over time. What has worked best, what hasn't worked, pitfalls to avoid, maximizing bang for the buck, maintaining as much independence as possible, etc.?

 

[nona]

Hi Fusia, I have lived alone for the last 2+ years. Initially I had help in the morning, midday, and evenings for meals, and then bedtime. At that point I could still get to the toilet from my power wheelchair and I could open doors with my feet. Now I need help with just about everything. Everyday, someone comes at 8:30 to get me up and to the toilet, does my tube feeding, bathing and dressing, feed and toilet again, and they usually leave around 2. I'm then alone until 5:30,when someone comes for dinner and nighttime meds and puts me to bed, which includes hooking me up to the bipap. I usually start the bedtime process around 9 so they're not here too late. I'm alone overnight and I have a medical alert button I can push with my toe.
My parents are elderly and can only physically help with certain things, and I have one friend who comes on Saturday nights, bless her. But in all, I pay for about 50 hours of help a week.
I miss being able to get up early and enjoy a quiet morning alone with coffee and the newspaper. I can't believe I'm in bed so late but it's comfortable and it works. I treasure the three hours alone in the afternoon. I hate having to be with someone from 7-9 in the evening so we usually just watch tv. Speaking is especially difficult at night so I feel rude with the TV on but it fills the space.
Feel free to ask me anything. I firmly believe that we are better off at home, though it can be frustrating trying to find the right people.

 

[KimT]

Thank you both for this thread. I have a housemate but not a CALS. We split expenses and that will help me afford caregivers. I really think I could use one now for cooking but am putting it off until Covid is under control or I am out of control!!!!! Whichever comes first.

 

[Fusia]

Thanks, Jessie, that's very helpful. I agree with you about enjoying my alone time - the idea of having someone else around many hours a week it's not very enticing to me. I plan to enjoy my morning coffee alone as long as I am able!

 

[nona]

I should clarify that I have lived alone since diagnosis except for year 3, when I moved in with my sister and her family in Tucson. She helped me to bed and I could get myself up in the morning. And someone came every day to help me shower but at that point I could still feed myself. It wasn't until I moved back to NH that I needed more regular help.

There are a few things that help when I'm alone. Alexa can turn on lights and my eyegaze can do the tv. Also, I first used elastic waist pants and shorts, commando, and then skirts were easier to manage. Then I cut my skirts up the back since it was easier to pull forward rather than up. But I was in a wheelchair by then so no one could see the cut.

 

[KimT]

Jessie, I think you are amazing. The details you share will help others. Thank you again.

 

[Bradytwin2]

We hired a live in caregiver experienced with ALS. My brother wants to remain in his home. He is 62 with an aggressive decline in his disease. She cooks, cleans, prepares meals, laundry, in addition to all his personal needs including exercising him, massages, etc. she arrives Mondays at 8 am and leaves Thursdays at 8 pm. His adult children and family fill in on those days off. She has taught them and OT and PT how to do many things regarding her care. The ALS organization might have names of caregivers in your area with experience. Do your research. These are home employees. Do not pay an hourly rate. Negotiate a daily rate. We also had a contract signed spelling out what her duties would be.

 

[lgelb]

The quality of the ALSA list may vary. The one we tried off it was horrendous -- kicked to the curb day 1. Most were not interested in our hours/budget.

Brady, Fusia is looking for a morning person/evening person so a daily rate doesn't apply as yet.

Of course, everyone should be interviewed these days in terms of their social contacts, masking, etc.

We found great people (all university students, not a plan, just happened that some others who were not, flunked out) by posting at universities and in one case, a CNA school. We were in a different situation as we used them as a late morning/early afternoon complement for range of motion exercise, eating, help with transfers/toileting; they were not generally alone in the apartment, though often alone with Larry. But we only hired people that we had confidence could be. Most are hospital nurses now, the others in different health care areas.

For now, it might work out that one or two students a day could do what you need currently, Fusia, the morning and evening, based on their classes, esp. since many are attending on line.

My advice boils down to trusting your instincts in hiring. You and the right people will work out the rest. I think one of the reasons students worked best for us is that Larry was an independent person, of necessity from an early age, and did not want a "caregiver." He and our helpers introduced each other to new bands, movies, swapped stories, advice, etc., in short had long conversations that he would have had with anyone, and had only minimal conversation about ALS, most of that procedural.

Of course, those conversation would have been more difficult had he not retained speech. But even then he would not have bought into the mentality that he was an object to be dressed, fed, toileted, etc. He was not amenable to cheerleading, either. He wanted someone who said, "How's it going?" first thing, not "How are you feeling today?" You get the idea.

In addition to $ and experience, our students got detailed, glowing evaluations for their nursing school/job/scholarship apps that in several cases were material to the right opportunity.

Each could also be quiet, which is a basic human need. Don't get someone who needs to fill the white space, if you don't want that. Etc. It's more important to get a person you like, who's amenable to/capable of being trained up on new things, than the person who claims to know it all. You're not hiring a nurse, but an assistant.

Best,
Laurie

 

[Fusia]

Thanks, everyone, for some great information. I especially like Laurie's advice to find someone that can be quiet instead of filling all of the space with talking!

 

[Babycakes]

Hi there. Thank you guys for being so open and sharing your experiences. I wanted to ask if anything helps pay for the type of help you are describing? Private insurance, Medicare, Medicaid?

for background, I am 36 with slowly progressing ALS, diagnosed 2 years ago...symptoms for 3.5 yrs. I recently saw a lawyer for a will and he was suggesting heading towards Medicare eventually. But would that pay for home care?

Thank you

Fusia-it’s awesome to hear how your advocating and decision making for yourself.

Kim

 

[lgelb]

Kim, Medicare and private plans typically won't pay for "custodial" (vs. nursing or other clinical) care. Medicaid will, in a restricted way, depending on your state. If you have a long-term insurance plan, that would as well.

You automatically qualify for Medicare with this diagnosis if you have enough work credits. It works with Medicaid if you qualify for both. Are you still working, with other health insurance? The timing of when you quit, file for disability if/as applicable, etc. is complex and worth some research.

Best,
Laurie

 

[Babycakes]

Thanks Laurie,
I stopped working May 2019. I’m on Medicare and my spouse’s private insurance right now. I also have a LTD policy from my last workplace.

I have a life insurance policy with a terminal illness rider and we were trying to find out if it would be advisable to try to get it. Our lawyer basically said no....spend/transfer assets so when you need more care you can apply for Medicaid.
I’m attempting to research more to see if Medicaid (or anything else) would cover home care...which seems like the majority of what PALS needs are.
thanks
Kim

 

[nona]

@Babycakes , I am on Medicare and LTD and state pension. Ihave no dependents so I chose to cash in my life insurance rather than spend down assets, which was more complicated. I pay for home care with that money and counting on it outlasting me, as morbid as that sounds.

 

[Babycakes]

That makes sense to me It’s a lot to consider for sure. I like having the knowledge of what my options are before needing to do it.
As far as caregivers...I’m not needing them yet, but I’m an RN and when I was in school I did a bit of caregiving. I liked what someone said about spelling out the persons responsibilities and making a contract. If it were me...I’d probably choose a different person for the morning and a different person in the evening. Gives you variety and a backup person who knows you in case someone is sick etc.

As far as finding someone...for my kids (sitter/nanny) I’ve used Care.com and UrbanSitter a lot and I’ve also used an agency for backup care and hired the person privately for future needs. I know Care.com does other things besides childcare—might be worth a look. CNA or nursing school students would be great...It might be hard to advertise to that audience.
All the best,
Kim

 

[lgelb]

All nursing schools I know of are at universities that allow posting one way or another. There is usually a fee now. CNA programs generally get the word out for free.

Transferring assets/spending down to be eligible for Medicaid is different in every state, there is often a lookback period because a lot of people want to qualify, and laws are often in flux. I advise you to speak with an attorney in your state with this specialty.