Planning move home; could use your help.

[Mr Wings]

Hello All,

We're planning a move home for my mother. She's currently at a nursing home. The nursing home can't/won't keep up with her needs, and we can't afford to pay them AND pay a private caretaker to be by her side at the nursing home. So, we're planning to take her home for care.

Background: Mom's speech is at about 50%. A good listener can get about half of her sentences without asking her to repeat. A less experienced listener can get about 25%. Her arms and hands don't move. Her legs can click a call button (yay!) She eats orally (takes 30-45 minutes), but has a g-tube too. She uses a hoyer lift to get on the commode or in her wheelchair, though doesn't always use the commode. She has a wonderful hospice care team. She uses the BiPAP at night. She uses cough assist, nebulizer, and suction about once a day.

I'm looking for honest and realistic answers to these questions. I know that nothing is totally predictable, but I'm looking for answers from YOUR experience (or from people you know). Thanks in advance for your help answering any of these questions.

1)Agency vs private caretaker: I'm being quoted $255 per day ($7,650 per month) for live-in care provided by an agency. I'm being quoted about $175 per day ($5,250 per month) for live-in care provided by a private caretaker. We can make it work financially either way, but we would obviously benefit from paying less. Is it worth the extra money (in your experience) to pay an agency?

2)Carpet: we'll be using a hoyer lift, and an electric wheel chair. Here's an example of how our carpet looks. Will those devices work on that type of carpet? Should we get plastic mats to put on the carpet (like the mats used for office chairs)? Should we get rid of the carpet (revealing an ugly hard-wood floor).

3)What's the best way to keep your caretaker happy, so they don't burn out and quit?

4)Will we eventually need to pay for care taking shifts (have someone awake and by her side all day and all night)?

5)Can one hired caretaker handle this? The only person living in the house besides the hired caretaker and Mom will be Dad, who is in his 80s. For the sake of his health, he will not be able to step in and help much with care taking.

6)Can a live-in caretaker handle being awakened twice per night to do brief tasks? I have heard conflicting answers to this question, so I'm wondering in your experience if this is doable. Have you had a caretaker burn out and quit?

 

[gooseberry]

We are not quite at this point but I am trying to set this up. I have been told that for non-skilled care a student nurse might be the best option. I say non skilled because while they might have some knowledge they haven't completed school and may not have done clinicals.

I would suggest 2 caregivers because if one leaves it let's you semi maintain while you get more help. Also vacation coverage.

We were advised that a pwc will rip up carpet and solid surface flooring was recommended. However, several pals and call have carpet and do okay for the hoyer and the pwc.

Your biggest challenge will be to find a caregiver that can take care of a peg tube and help with a trilogy. Training by you is probably going to be required.

 

[Nuts]

Mr. Wings, those of us who are sole caretakers for our loved ones burn out; I wouldn't expect a hired caretaker to to full-time round-the-clock care. You are right about everyone being different, but around here a GOOD night is when I'm only awakened twice. I do not believe it's reasonable to think that you will be able to hire one caretaker and turn everything over to just him/her. I am extremely fortunate in that I have someone in for two hours a day five days a week, except on Wednesday when I get 9 hours of "free time". Other people do it all on their own, but I don't believe any amount of money would be enough if they had a choice. That's just me taking care of my husband. Let's face it, if your 80-year old dad is there, he's probably going to need some help also.

I would remove the carpet. I've tried the office pads under a hoyer and although I thought it worked at first, I quickly gave up. Of course, that may depend on how much your mom weighs and how strong your caretaker is. Also, you end up with enough spills that the carpet becomes difficult at best to keep clean.

The consensus around here seems to be that any good, conscientious, careing person with enough strength can be trained to be an ALS caregiver. This issues is being covered in another thread right now--if you do your own hire you are responsible for employment taxes. You should also get a good background check and have a backup plan in case that person gets sick or quits on you.

Note that I've written all of this not knowing your mom's condition. The truth is, whatever state she is in now, she will only need more and more care.

I applaud you for wanting to bring your mom home and provide better care than the nursing home, but you aren't going to do that very long with only one caretaker.

I know others will chime in. I don't know the answer to this except to ask yourself how long you would last if you were the only person caring for your mom around the clock, 7 days a week, with no other help.

Becky

 

[Mr Wings]

Thanks for your reply!

The student nurse idea is new for me. Thinking back to when I was a college student, I wouldn't have had much time to do care taking. I wonder how that works out for nursing students. Their care taking shifts would have to be fairly short I would imagine. Maybe 4 hours a day max?

We're definitely planning to have more than one caretaker for my mom. We know the caretaker will need two or three days a week off, or at the very least, every other weekend. I'm wondering, will we need more than one caretaker at a time.

Thank you so much. Good luck making care taking arrangements!

 

[Mr Wings]

Thank you Becky!

I really appreciate you telling me your experience with being a caretaker. It's an experience I haven't really had, because I only did care taking in the very early stages. Since that time, my Mom has been at a nursing home.

I want to specify that when I said "one caretaker," I meant "one caretaker at a time." We will definitely plan on giving our hired caretaker some days off.

You are right that my dad will need care-taking down the line. Right now he lives at home on his own, and he manages, but there will come a time when he needs more care himself. I'm gonna keep that in mind.

Thank you so much.

More later.

 

[lgelb]

Wings, first, please don't quote previous posts in replies, and please don't post in duplicate.

You only need one caregiver at a time. Please don't say caretaker. We used pre-nursing students mostly (willingness to learn meets desire for letters of recommendation for nursing programs), and sometimes nursing students (who had already been with us as pre-nursing students). But basically we only recruited for very PT help with bed-to-lunch stuff.

Yes, short shifts. Ours averaged 3-6 hrs depending on schedules and needs. Summer and winter breaks, things change. We let our students trade out "shifts" with each other if/as needed. Sometimes one was available for a FT part-of-the-summer gig.

If it were me, I would try not to use an agency, and we didn't, but if you know of a good one in your area and can pay the freight...we did interview some people who had worked with agencies. It wasn't a fit.

If you are going for completely third party coverage, you're probably going to need longer shifts, thus, possibly students in online programs, though of course those will not be health professions students.

I can't speak as much to FT caregivers other than to say, "Be careful." Check out listings on care.com, craigslist and other sites. You get everything from foreign health professionals who can't afford recertification here, to people I wouldn't hire to clip a toenail.

But anyone, everyone that helps your mom will need training. We had our more senior students train the junior ones if schedules worked out, or did it ourselves. Usually a combo. And I was always teaching. But we (our son and I) were always around. So that was a different situation. You need to learn yourself how to use the PEG and Trilogy, so you can train others and help out, from feeds to emergencies.

The picture of the carpet doesn't show me how "shaggy" or thick a pad it has. A bit more nap than an indoor/outdoor carpet is fine, but not shag or very thick. If you could ride a bike through it without wobbling, it's probably fine. Whatever works for the Hoyer or w/c will work for the other.

What she ultimately needs is down to her progression pattern and end-of-life preferences, so we can't predict at this point. But make sure all the paperwork, e.g. advance directives, is done and accessible at her home.

 

[Mr Wings]

Thank you for the extremely informative reply, lgelb. Now I understand the advantages of the pre-nursing students. I suppose "caretaker" more often refers to someone who takes care of some kind of property, like a house, rather than a person. I think we'll just have to try the carpet out, and if it doesn't work, get rid of it. I think I could ride a bike through it.

Glad to hear one caregiver at a time should work out, in your experience. Looking to hear more people share their experiences with that.

 

[helkat22]

It sounds like you are set on leaving the nursing home...but if not, have you considered hospice in the nursing home? It's not perfect, but it may be better than what's happening now.

 

[lgelb]

Helga, Wings pointed out that his family understandably lacks funds to pay for both the SNF room and private nursing. Technically, his mom can be under hospice care at home with the team she likes, but that will hardly constitute 24/7 care.

 

[Nikki J]

Helga was suggesting hospice while in the nursing home I think?It may vary with individual hospice providers. Around here the hospices used to send an aide to the hospice patients for an hour or two several days a week. That gave the patients some one on one time covered by hospice. Around here that does not happen anymore. Hospice will see nursing home patients but take the position that the services that the aides performed should be done by the nursing home. I do not know how this is handled in other areas of the country

 

[helkat22]

If someone is eligible for Medicare, and they meet hospice criteria, they would be eligible to receive one on one hospice care (usually a few hours per day) in the nursing home ��

 

[Nikki J]

I only know what happened in my area. The involved patients were medicare/ medicaid. It would be worth calling and asking the local hospices if the op is interested if they provide the aide for nursing home patients.

I was surprised and saddened by the no aide policy as it was a real benefit to the patients

 

[lgelb]

Nikki, I was assuming since Wings mentioned she was receiving hospice services already that she was maxed out at the SNF. So that's why I was jumping to the home setting he's been talking about.

Helga, it is true there is a distinct hospice benefit for the terminal condition in a SNF but as Nikki points out, not necessarily specific regulation around how that benefit is implemented by the hospice with which the SNF has a contract.