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Distinguished member
May 30, 2018
Lost a loved one
We have a mix of ways that we have help. I thought I'd share them. I'd also be interested in hearing your ideas.

For reference, my Dad is mostly immobile now, (diagnosed the end of 2018.) All transfers are with a Hoyer lift. He does get transferred to a commode or his PWC, (mostly if we're leaving the house these days.) He's no longer swallowing and has a feeding tube. He has bipap, but mostly uses it at night. He's almost completely lost his voice.

- ALS respite: We have 18 hours a month of respite through ALS. We use them for caregivers to come to the house and give Dad baths and do his range of motion exercises two mornings a week.

- Volunteers from church: We have a nurse from church who volunteered to come one morning a week so my Mom can get out of the house and do some shopping.

- Friends: I have a friend who has done home care. She also comes one morning a week to help.

- Friend in nursing school: She comes two mornings a week for baths and exercises. She also comes Monday - Wednesday evenings for getting ready for bed.

This leaves Sunday morning and Thursday-Saturday evenings for me to cover.

In addition, between me or my friend who is studying to be a nurse - one of us is always on call. My husband and I are temporarily renting a townhouse within five minutes of Mom & Dad. She lives within 15 minutes. So, if I need to leave the area, I make sure that she can cover them if they need help.

I know that there are websites that you can use to organize helpers. Maybe someone can remind us of what they are? We haven't done that. It's one thing to have someone buy groceries for you. It's a completely different thing to ask if they are OK with helping with toileting.

I know more help can be available if you're a veteran. My Dad isn't. Maybe someone with more knowledge can chime in.

There was a lot of talk of hospice at the beginning. We haven't gone that route yet. I do think we probably have all the equipment that we need now. It's likely getting closer. But, it's a definite change of mindset.

In our case, some help is paid, while others do not want any compensation. We have avoided paying through any agency. I realize there are benefits; having a back up, background checks, etc. Of course you pay extra for that too.

I feel extremely blessed at the amount of help that we have. I read about some of you doing it all on your own and it breaks my heart. I'm hoping that sharing ideas will help all of us get the help we need.
Thanks. Although the organization varies from one country to another this thread is likely to be very helpful to many people
Have good days
Hello, I can share with you my situation, especially since my mother's physical condition sounds somewhat similar to your father's except she does not have a feeding tube, and we're pursuing bipap right now, with an assessment planned in the next 2 weeks. She lives in a studio apartment in my apartment building, so she's just a 2-minute run down the stairs, or a quick elevator ride away. She spends all of her time in bed except for commode for "big business" and washing up in the morning. We're trying to get her to use her comfie lift chair, making some headway on her considering it, but she thinks it's exhausting just to be transferred.

I live in a big city, so we have a few more resources. From the province, my mother receives support from an attendant services programme, which assists in the activities of daily living for people living with disability. From them we get 1.5 hours in morning for toileting and breakfast and dressing. An hour at lunch for brief change and making simple lunch, getting her set up for the afternoon. An hour at dinner, brief change and heating Meals on Wheels or other prepared dinner, and getting her comfortable for the evening. And an hour at 8pm for bedbath, brief change and getting ready for night. The hour at dinner is a short-term thing, 3 months, which they're giving as respite for me, as we transition into this programme. There are clusters of people in this area, so the PSWs roam around and provide services.

We'll be getting more services on our own dime as we need more help. The PSWs we hire will be somewhat subsidized by government programmes, and come at $17/hour for minimum 2 hours. Right now, morning care is excellent, and the rest are adequate. I fill in whenever else she needs, but she sleeps most of the morning, another nap in afternoon, and then sleeps from 10-5 or 6am and is happy to be on her own.

My sister is providing homemade lunches for her, and I have occasional homemade dinners for variety. My sister comes to spend Sunday afternoons with her from another town. We have no other active support. I have had some friends offer to sit with her, but she doesn't need that kind of help. I kind of feel like, if you can't change a brief, it's not much help. I figure I spend on average another 3 hours with her per day, coordinating with caregivers, filling in when they are late or don't show up, ordering supplies, and personal care. So I calculate, daily, she's needing 7.5 hours per day. Even my respite, if it's not for something practical like a PSW making a dinner and doing a brief change, it's no real help for me. Maybe I'm over-zealous, but they'd be asking her a hundred and one questions, and talking is exhausting for her.

I've been doing this for a month now, and I was surprised at how much this is taking out of me (she's 87, I'm 60). Just the set up of her independant apartment in my building really exhausted me. We're over that hump now, and things are running pretty well. I'm on a pretty short string though, with no backup for emergency trips to the bathroom for a BM, so I can't go too far (more than 15 min. drive away) without some anxiety, so I'm curtailing my activities, and ordering more stuff in for delivery. Luckily I can walk to a grocery store, 5 minutes away. I know we're in for even more rocky stressful times as she progresses. But I'll just have to take that as it comes. If we need a night nurse, we'll hire one.

Hope that helps.

Kathy is one site. We used it for my sister. It is as good as your support team. I do recommend setting it up early. Then you can sign people up for the site when they say what can I do? Once they are members they can see posted tasks and sign up to do one. The admins can also email when new tasks are posted. I also recommend having a couple of admins. It is good for the PALS/ primary CALS to be able to post and modify but if someone else can also be responsible that is good.
Kathy, even with help, we all know the stress. I hope that you find a way to get a break from being "on call" sometimes. How does she alert you if she needs help?

Nikki, is the site I was thinking of. Thank you!

I know ALS also has volunteers that will do things like mowing the lawn, small chores, etc. Has anyone used them? We're somewhat outside the major metro, so we haven't used that option.
ThisPresentMoment, At this point, I think I just have to be physically present. I think I can't just let her only be looked after by PSWs. They do the heavy lifting, and some are wonderful, but too many things just don't get done well. Last night, her brief came unstuck and she woke up in a puddle in the morning. I'm suspecting one of them cannot read. One never locks the door when she leaves. None of them consult the care plan I wrote out for her. Oh, actually, that's all the same PSW! And she's pretty vulnerable due to her poor speech and mood. Sometimes I imagine what it might have been like to live on a farm, where your obligations are daily, scheduled, stressful, relentless, unavoidable. I think it's just going to be my life while she's still with us. So far, she's okay through the night on her own. She can still call me, and I almost never understand what the issue is, so I pop downstairs in person. She also has the Freedom Alert system, a pendant which works with her existing phone system, which I highly recommend. It calls 4 preprogrammed numbers in a row, and if no one picks up, it dials 911.
I set up a lotsahelping hands early on. I used it quite a bit when I fell and sprained my ankle. I haven't used it in awhile.

I get meals from Healthy Chef. They are organic, vacuum sealed and delivered each Friday. The portions are huge. We have a service from our local grocery store that delivers groceries but I've not yet used it as I can still drive.

Our local pharmacy offers free delivery.

I've written out all the meds and vitamins/supplements I take and organized the cupboards so someone can easily take over, when needed.

I got all my durable medical equipment very early on and did the remodel as soon as I moved so all that is done.

I have no family but have some wonderful friends. I plan on hiring some caregivers that work here in my condo and also some from an agency when the time comes.

I trust the service that cleans my house. I've known them for years and they understand my issues. My friend takes my dog to the groomer on a regular basis.

I recently found that they started a new transport system for PWC patients that is free for doctors' appointments.

I tried to plan ahead as much as possible but I was very fortunate because my progression was so slow.
Kim, it sounds like you have your ducks in a row. It's great that you have some caregivers in your condo. That would be ideal.

Has anyone used sites like I've looked, but we've never tried to hire from there. (My daughter used it previously as a caregiver for kids with special needs.). I also placed an ad on craigslist, but never got any responses.
You might want to explore hiring CNAs from your local college. Some of them are in the bridge program to become LPNs or RNs. It would give them good experience on their resumes and reliable ones will want a letter of recommendation.

I'm not a big fan of Craig's list. We have a local hometown news and there are always CNAs available. Their going rate here in Florida is $12 an hour. The cargivers who work in my building charge $15 but they are very dependable. Companies usually charge over $20 an hour, at least down here.

You'd think ALS clinics would be a good source of referrals for home health care, but in my experience, they are not.

Friends of friends and people from church also might have good leads.
We got all the help we could use, wonderful students for whom I have written many recommendations, who are in nursing and other health professions now.

Google CNA trade schools, universities and community colleges that have any combination of pre-professional and nursing, PT, OT, RT programs and you will find how to post to their job boards. Some are free and for others there's a small fee.

We did dip our toes into Craigslist and the local ALSA list initially, with essentially horrifying results. At a minimum, I would run a criminal background check on anyone who characterized themselves as a professional caregiver, as opposed to a verifiable student. And of course you can verify CNA and other credentials on line with the State, for anyone, for free.

As for, I know at least one person who's listed there and the same considerations would apply, including reference checks.

The most important thing is this: Recruiting any caregiving help through any means, requires the willingness to zap people who don't work out, which we did more than once. If you don't have that, make sure someone in your orbit does. If you would not recommend a caregiver to someone else, that person should not be in your home.
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We plan to talk to hospice this week. The company that provides our ALS respite hours has told us that hospice will take over what they have been doing. That means we will lose our caregivers on Monday and Wednesday mornings. So many questions to ask! It also makes us sad. We'll miss them.
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