Lost

[MJT]

I listened to advice and hired help, even though we didn't want it, because I was worried we'd get into an emergency situation or that I didn't know what was best for me. I did research and asked friends for recommendations. The "best" was available 2 days a week, which was perfect. Though they are wildly expensive, I was willing to pay and have a tiny part of this LIVING HELL in place and under control. This morning I straightened up, moved a chair so they could take a break in a separate room, and ordered $150 worth of groceries so the caregiver would have plenty of lunch options tomorrow. PALS could barely stay in the shower chair today, and we both cried over that. I began to think maybe people were right and that we would need help. Right after his shower, the caregiver called to say they were sorry, but the other family they are working with wants more hours, and they won't be able to work for us after all. I am falling completely apart. I don't know what to do. I don't know where else to look for a caregiver. I only know of agencies to avoid. I am so sad and scared of the future.

 

[Tomswife]

Arrangements for health care aides are not easy. My suggestions are: call some local churches or temples to see if they have people they can recommend. Our church keeps a list of people who are freelance and who may be available and also agencies that people liked.
In NJ it is a very competitive market. The agency i am using was suggested by the regional ALSA LCSW person .
Our ALSA also has a list of experienced caregivers who may be available. I called many on this list. Most were on a case, wanted full time, or live in. One i spoke with was available but i could tell from our conversation she had little experience, and I did not like her overselling (said ridiculous things).
I have a parade of different people. I did not think I could handle so many people helping, but it has gone well. The aides have a lot of say about where they will go case wise. Few want to be involved with a lift, even with me in charge. We started in January and we have had about 12 different people. I dont want any chores done. They are to sit by PALS and help him. I stand by during bed wash. I control the lift and they help me. Most of the time they do nothing. I am ok with that. I am not alone.
I called this morning. Who is coming this week? Answer. We are working on it. Most of the aides have been very very good.
I gave a lot of thought to direct hire. Decided against, but many people do.
Take care. Hugs.

 

[lgelb]

Very sorry you had the rug pulled out, MJT, and that you are seeing progression.

I interacted directly with pre-nursing students by posting online with two universities, and also posted at a couple of CNA programs. Since they were students, their hours were mostly late morning/early afternoon. Over three years, we had a dozen caregiving students, + a couple more who catalogued some of Larry's collections with him.

All were able to learn (only 1 or 2 had caregiving exp) how to help with positioning, transfers, PWC adjustment, feeding what I cooked, wound care, ROM exercises, light massage for edema, but in the end, they were there for the social aspect (sharing music, movies, e.g.) that we did not have otherwise, having just moved here. Students can help find others and trade days among themselves.

All earned stellar evals/letters for nursing school/internships. We certainly eliminated a few duds in screening. But like any other hiring, when you are clear-eyed, your gut says it all. I would do it that way again in a heartbeat, and still keep in touch with many.

Didn't have any luck with the ALSA's list -- in fact, the scariest person we interviewed came from it. But of course that is chapter-specific.

 

[Mary2]

Tom's wife has good suggestions and Laurie usually recommends pre-nursing or pre-pt or ot students from a local college. I have not been out of the house longer than 3 hours since January 2020. I am never more than 8 miles away.

Over 25 months we have had 5 caregivers. 3 from an agency and 2 from Care.Com. One caregiver has been with us 16 months. Every Thursday I sweeten the pot by putting something under the candle on the coffee table where he sits. He does use the hoyer lyft and probably against agency policy does 2 tube feedings when he is here. He also mops the hardwood floors, does PALS laundry including changing the bed. Does dishes and generally cleans the kitchen. He does fair with the bi-pap. In an emergency with the bi-pap all bets would be off.

Through Care.com I found one caregiver who was excellent with PALS but very much working too many jobs and very tired and very short money. One evening she was a no show. Never heard from her. I have two engagement rings that are missing. A second caregiver through Care.com is an actual RN....at home with 2 children. She isn't being paid like an RN. I don't know how long she will stay. She is excellent. I pretty much do the hoyer lyft when she is here.

Caregivers are in demand here. Many prefer to work with dementia patients.

MJT I hope you find help.

 

[KimT]

I had to interview and hire some CNAs for a friend whose Mom was end stage kidney disease. She was elderly but required constant care. I had the best luck at the college. We found four CNA students and one bridge student CNA to LPN. They were able to set a schedule to do 16 hours each day. My friend's niece did the other 8 most days. They were willing to learn anything. She had to be hooked up each night to home dialysis and they quickly learned how to do this. They did light housework, dishes, and were willing to buy groceries on their way to shifts. Of course, this was before Covid.

I called my local chapter to see what they had for people with ALS. They referred me to an agency. I called the agency and they wouldn't give me a quote over the phone. Some PALS in my support group were looking. In the end, they also went to the college and spoke with Head of Nursing. They were allowed to post a job description on the bulletin board on campus. Students need experience on their resume. They don't want to risk bad recommendations. They also work for less money than agencies but you have to vet them.

 

[lgelb]

I should have added that except for rare occasions, either our son or I were always no further than the living room at all times. And no one but me adjusted the BiPAP.

We could have left one of "the girls" in charge more often, but that would have made Larry uncomfortable and there was no need.

 

[MJT]

These are great suggestions, and your posts answer many of my questions. That's interesting to know about people not wanting to help with the lift. From what everyone has described, I'm not sure we will need help after all. In any case, I feel prepared if we change our minds. Thank you all for sharing your experiences.

 

[Tomswife]

Mjt. You do need rest. I have someone at night 10pm to 6am. Tom needs the urinal about 3 times. If he needs to bm they are to call me. I was getting up during the night, 2. 3. 5 times and realized i needed sleep.
I bought the CALLTOU wireless caregiver pager on Amazon. Tom has the button. The receiver is in our bedroom. Before i had help Tom would ring me for urinal help. Now he or the night caregiver can ring me if needed. It sounds lije a door bell.

 

[Mary2]

Tom's Wife is right about the need for rest and self care building up. PAL's is having trouble with his secretions at night and this is getting me up at night. I am physically exhausted.

Of course I am suppose to wear a CPAP and don't and have an appliance from a dentist that doesn't fit well. And I eat microwave processed food and eat very few veggies. I will be lucky if I don't have cancer by the time this is over.

I recently joined PlateJoy which suggests very good meals that I would like and puts together a shopping list for you. I have hopes this will help me eat better. I am too tired to exercise now. I am suppose to have coffee with a friend tomorrow and may be too tired to do this.

PALs isn't incontinent but does have frequency at night. He wears a diaper for this and this has worked out okay.
We don't fasten the diaper so it is easy to remove.

I have had to add help and hours as the months have gone by. The need for rest builds up. I still get PALS up by myself 3 mornings a week and do the evening care 5 evenings a week. The afternoons aren't bad. PALS spends time on the computer.

 

[Tomswife]

Mjt. If you have a dog or cat that adds to caregiver complexity. The 70 pound lab hound mix and very needy cat are in the back of the house....where the kitchen is and stairs down to laundry. That is why i dont give aides chores. They dont want to deal with the dog. And i dont want the dog and cat loose in the house.
Some caregivers say, no dogs.

 

[MJT]

These details clarify things. Thank you for taking the time to share. I was overwhelmed and confused about what caregivers would and would not do. It varies widely. One I interviewed and loved wanted to cook deviled eggs. While I do adore deviled eggs, that's not what I need. And when CALS(s) posted about staying home with the caregivers, I thought, "there is no way." Our place is tiny by American standards. I would rather hold off than add a stranger to this square footage (we also have 2 dogs). I hate learning everything so quickly while losing my husband and taking care of everything. It makes me angry.

Mary, I agree about exercise going out the window. And is nobody offering to bring you meals? I was hesitant to accept help but not anymore. Friends bring meals 1xwk. They bring large portions so I am able to freeze some. I also use Instacart to get groceries delivered. Tomswife, please let us know the minute PALS gets his BiPAP. I am sending hope that his personality is restored. Everyone, I appreciate your encouragement to stay on top of rest and self-care. Sending love to all.

 

[Mary2]

I am still using Insta-cart as well. I prefer Kroger pick-up but haven't been able to schedule in picking up the food. I did make it for coffee with a friend today! Hope to go out for coffee again tomorrow!

Tom's wife, I hope the PFT's are going/go well and that Tom gets a bi-pap today!

 

[affected]

With you in spirit Tomswife!

 

[Mary2]

At this point many of my friends and their husbands have health problems. We'd all be making food for each other! PALS has had problems since 2016 and has been fairly slow but steady in his progression. We haven't had to be in crisis mode....just rested enough to get done the required tasks of the day.

 

[MJT]

Well, that's an issue I hadn't thought of. (friends all needing each other at the same time) So far, I don't mind the work. It's keeping up with the moving target that's killing me. It makes me happy that you might go to coffee 2 days in a row!

Also, why can't we have a reaction emoji that isn't a laughing heart? It needs to be a regular heart.