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Manhattanite

Distinguished member
Joined
May 10, 2015
Messages
209
Reason
Lost a loved one
Diagnosis
05/2015
Country
US
State
NY
City
New York
Hi, please bear with me as I post my rambling thoughts on an issue I am going through at the moment.

Unfortunately the time has come to get a caretaker for my partner for 5-6 hours a week. He has finally agreed to receiving all the Jevity 1.5 that the nutritionist prescribed (he had resisted for a long time) after watching his weight drop to 128 lbs. I work full time and I am able to give him a feeding in the morning, then a second one when I return home at around 5:30 pm and a final feeding at 8 pm, but I want someone to come in the middle of the day to give him the second feeding and look after him, as he is alone all day.

Option 1: We live in a high rise building with hundreds of apartments in a part of NYC that has a large senior population, so I figured that there must be people in my building already receiving home care. I checked with the doorman and he recommended someone who is already taking care of another person in the building. I have had this person's number for five days but I am paralyzed. I dread making the call. I hate dealing with these situations and my partner was always the one who took care of dealing with handymen, repairmen, etc.

Option 2: My partner's psychologist thinks that we should go through a "professional" home care service such as Visiting Nurse Service of NY to find someone who can provide more in-depth care such as a bit of occupational/physical therapy. When he had the PEG but in last year VNS provided one week of nurse visits and we had a nurse who was very competent. I called VNS yesterday to see if I could get in touch with this nurse, but they said that I need to go through their sister service called "Partners in Care" because we would have to pay privately, as Medicare will not pay for home care. I am concerned about the cost.

Option 3: I also went into care dot com and found some care takers who appear to be competent. But I have a funny feeling about this site and having to perform a background check.

Option 4: Finally, our ALS Clinic gave me the name of someone at the ALS org who can give me referrals. I've been playing phone tag with this person but it's my turn to make the call.

Then there is the issue of thinking of what the home care person would do. PEG feeding, nail clipping, help with shaving, cleaning the tubes of the Trilogy and cough assist machines... Partner is still independent but he is becoming weaker every week.

I feel overwhelmed and paralyzed. I am grateful to have all these options, but I don't seem to be able to take the next step.

Thanks for listening :oops:
 
How do you eat an elephant? One bite at a time.

List all the things you need to do to arrange caregiving services. Ex: 1. Research this issue. 2. Call and ask about that issue. 3. Visit and ensure they are doing the other issue.

Check off each tiny task. Reward yourself, then go back to the list and do the next ite,

Repeat until entire goal is reached. Getting affordable caregivers for the hours you need them.
 
Manhattanite - I feel your pain. When Brian was first dx and up until he had been on the vent for 9 months, I cared for him myself. I am again now, but that's a different story. Anyway, I got to the point I knew I needed help, but making that call was tough. I think because in one sense it made me feel like a failure because I couldn't do it. I've always been very independent and it was hard to admit to myself that I needed help and could not do it all. (all being taking care of him, and still working, and taking care of a teen) That might be part of your paralysis. It could also be that your worried they won't take care of your partner like you would. So many things to think about.

I have had nurses through an agency and friends I've hired myself over the past 6 years. Both were good, both worked. But, once I was finally able to "let go" as it were, I found out how good it really was. It was also good for Brian to see someone else around.

I can say this, I don't think you will regret it in the least. If I could afford to hire on my own now, I would.

As Mike has said, take it one small step at a time.

Hugs,

Sue
 
For a couple of reasons, care.com would be bottom of the list for me. I know people registered there. #1 is low-hanging fruit and the person may have a referral for you, #2 will be pricey and if he needs OT/PT, his doc should write it so you get reimbursed. #4 is always worth exploring to grab more names but there's nothing magical about them. A couple of the worst prospects I ever met were recommended by our local ALSA.

If I may add #5, you're in a city full of CNA and nursing programs. Post there, on line. #5 is all we ever needed to do for PT help though we occasionally interviewed through other sources to see what we were missing (answer: nothing). If you don't like making cold calls, these are the magic words:

"I was just wondering..."

"I heard..."

Pretend you are talking to a friend. Most people, the vast majority, want to be helpful. If they don't, "thanks anyway" and you hang up!

If you don't like being the cold caller, leave voice mail late at night so they have to call you back.

Of course, there is also, often, email...

Just get unparalyzed once or twice, and you can keep going from there. There is nothing wrong in listing security and companionship as part of the gig if that's what it is -- it doesn't all have to be shaving and feeding. Hire people who can evolve as he does.

Best,
Laurie
 
Thank you everyone for your words.

I ended up hiring the woman who is already looking after someone in my building. Her shift ends at noon which is perfect for the midday feeding.

Part of my paralysis was that hiring a caretaker for the first time meant admitting that we had entered a new stage of the disease.

Every new stage is a like a little death.
 
We had lots of problems finding and keeping private care workers until we started posting help-wanted ads on indeed.com. I also wholeheartedly agree with Laurie that his doc should write it so you get reimbursed, but I would not limit that advice to OT and PT services, because it also helps to have the doc write a plan for nursing and aide services, too.
 
Home health and hospice services usually have a list of private duty help. Just get a list and go from top to bottom.
Be prepared for folks to quit on you. We were lucky the second person we hired stayed 2.5 years and was there when mom died. Perhaps look into retired nurses wanting some extra cash.
Remain proactive. I spent hours on the phone at first. It can be done. I called hospice and palliative care services all the time.
You will most likely have to pay some folks out of pocket. But there are really good folks out there who want to help.
By the end, we had a APRN who did house calls once a month, home health RNs, and a CNA. Sometimes they would all show up at the same time. It was like an ICU in the living room. I would joke and say on those occasions that nobody in the history of medicine had that level of care at home.
 
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