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Ferrets are Cool

(21,063 posts)
Wed Jul 27, 2022, 05:31 PM Jul 2022

Hoping someone might be able to supply some assistance on caregivers

Just to get you caught up, wifey has contracted MDS because of her extensive chemo treatments for Stage 4 Lymphoma.
The only way to "cure" MDS is to get a stem-cell transplant. This requires the patient to get the transplant, stay in the hospital for 4 weeks, then be transferred to a "place" where she can receive 24/7 care for another 8 weeks.
They (the hospital) will not give her the transplant unless we have the 24/7 care set up beforehand. They will also not assist us in finding said care. The ONLY assistance has been that we can hire someone at around $400 a day to stay with her.

Does anyone here have ANY ideas for us? We have become desperate. We have no family members who can give up their life for 8 weeks and stay with her. It is "nearly" impossible for me to do so because of reasons I will not bore you with here.

Has anyone been able to get grants to help pay for this kind of care?
Agencies we can contact?
Any ideas will be helpful.
Thank you, FAC

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Hoping someone might be able to supply some assistance on caregivers (Original Post) Ferrets are Cool Jul 2022 OP
Kicking in solidarity - hope you get answers! Alice Kramden Jul 2022 #1
Contact you local county office on aging. FalloutShelter Jul 2022 #2
$400/day? That seems stiff... is that for a nurse? I'm not up on nursing home costs, but let's say Karadeniz Jul 2022 #3
That is exactly what we are paying Beatlelvr Jul 2022 #6
Oh, boy, we're sunk! Our long term care policies paid out $3000/ mo when we bought them. Since Karadeniz Jul 2022 #12
Retired Home Health /Hospice nurse here... my suggestions flying_wahini Jul 2022 #4
Thanks. I copied for myself. Appreciate the tips and help for all of us. NT SWBTATTReg Jul 2022 #9
That is correct. It does not mean a nurse. Ferrets are Cool Jul 2022 #10
Also adding that you may just need coverage for say, half day if flying_wahini Jul 2022 #5
Cancer Society, Council on Aging, & your Dr. & senior center are placesI'd start with. SheltieLover Jul 2022 #7
Have you talked to LLS about this? Perhaps they moonscape Jul 2022 #8
Thank you moonscape Ferrets are Cool Jul 2022 #11
Checking in. Not sure when your moonscape Sep 2022 #13
Thank you so much for your post. Ferrets are Cool Sep 2022 #14
Very sorry about her moonscape Sep 2022 #15
... Ferrets are Cool Sep 2022 #16
I have no answers for you, murielm99 Oct 2022 #17
Thank you. Ferrets are Cool Oct 2022 #18
Oh my goodness, I wish I knew of something that would help! Dark n Stormy Knight Oct 2022 #19
Thank you Ferrets are Cool Oct 2022 #20

Alice Kramden

(2,157 posts)
1. Kicking in solidarity - hope you get answers!
Wed Jul 27, 2022, 05:43 PM
Jul 2022

Depending on her age & location, would a residential rehab facility work? If Over 62 y.o. perhaps a Senior Services caseworker could manage her options

FalloutShelter

(11,750 posts)
2. Contact you local county office on aging.
Wed Jul 27, 2022, 05:47 PM
Jul 2022

They were a pretty good resource when I was in need of assistance in the State of NJ.
Don’t know where you are but maybe they can help.

Karadeniz

(22,282 posts)
3. $400/day? That seems stiff... is that for a nurse? I'm not up on nursing home costs, but let's say
Wed Jul 27, 2022, 05:52 PM
Jul 2022

$6000/mo. That's about $200/day. Regular at home care, not by professional nurses, might be cheaper. Let us know what you find...
we might need that info one day....

Beatlelvr

(618 posts)
6. That is exactly what we are paying
Wed Jul 27, 2022, 06:20 PM
Jul 2022

$400 a day, 24/7 care. $6000 every two weeks. Not nurses but caregivers. That's southern California. I hope poster can get some answers.

Karadeniz

(22,282 posts)
12. Oh, boy, we're sunk! Our long term care policies paid out $3000/ mo when we bought them. Since
Wed Jul 27, 2022, 08:37 PM
Jul 2022

then, the premiums and coverage have gone up, but I'll bet it hasn't been enough for the amounts we're talking here!

flying_wahini

(6,529 posts)
4. Retired Home Health /Hospice nurse here... my suggestions
Wed Jul 27, 2022, 05:56 PM
Jul 2022

Is she on Medicare? Medicare will cover a home health service to come a few visits per week after a change in condition; a fall at home, a wound, a hospitalization will qualify. A Home Health RN intake employee can help answer your questions.
Her personal physician can order a Home Health consult to see if she qualifies
for care. (She probably will). Ask the Dr.’s office to recommend a service.
Home health is NOT 24hr around the clock care. The nurses just come by for an visit to change dressings, do med treatments. Home Aides can bath patients, change linens and set up or prepare a few meals. They don’t stick around while you go to the store.
A contact list of local home health services may also be a available thru a social worker at the place where she had her chemo or a local hospital.

Also when they say 24 hr care doesn’t mean 24hr around the clock nursing care.
They may mean just a sitter, not a nurse. A neighbor or friend may suffice. In home health in order to qualify the patient MUST be home bound. No driving to the grocery for a quick errand. It means she stays home ALL the time. You can be dropped cold for breaking this rule.
Call your local cancer support group, too. They know who to call and may be able to answer questions. Also the local United Way has some good resources that may help.

Hope this helps.

Ferrets are Cool

(21,063 posts)
10. That is correct. It does not mean a nurse.
Wed Jul 27, 2022, 06:58 PM
Jul 2022

The person would have to be able to assist in her meals and getting her to and from the bathroom. From what I can discern, she is going to be EXTREMELY weak after the 4 weeks in the hospital.
Thank you for all your suggestions. We will contact them.

flying_wahini

(6,529 posts)
5. Also adding that you may just need coverage for say, half day if
Wed Jul 27, 2022, 06:01 PM
Jul 2022

you work or must be out of the home on a regular basis. Don’t hire somebody off Facebook or a bulletin board. Sad to say but if you leave her with strangers she could be in a vulnerable spot.


The fewer people going in and out the better for the both of you.

SheltieLover

(57,073 posts)
7. Cancer Society, Council on Aging, & your Dr. & senior center are placesI'd start with.
Wed Jul 27, 2022, 06:33 PM
Jul 2022

Also try both Catholic Charities & Luthetan Social Services.

If a person doesn't know, ask for referrals to who might know.

Also try your local palliative care organization.

Best of luck!

moonscape

(4,664 posts)
8. Have you talked to LLS about this? Perhaps they
Wed Jul 27, 2022, 06:50 PM
Jul 2022

can help with resource ideas? Have you been to Smart Patients? Don’t know if they have an MDS area, but if not you could tap into the lymphoma area and post your query there. I only k ow the multiple myeloma area but there is a wealth of knowledge ‘monst the patients there so could well be the same in the more common lymphoma area (if not MDS.). Needing caregivers for transplants is a common occurrence for blood cancer patients.

Very sorry you are in this bind and that your transplant team can’t be more helpful, okay at all helpful!

moonscape

(4,664 posts)
13. Checking in. Not sure when your
Thu Sep 1, 2022, 06:37 PM
Sep 2022

wife’s transplant is scheduled but thinking it could be soon. Any resolution to your human resources issue?

It’s all daunting. Wish I could offer more wind at your back than just words, but if thoughts could yield a gust, mine would be sending a helluva ride!

Ferrets are Cool

(21,063 posts)
14. Thank you so much for your post.
Thu Sep 1, 2022, 07:00 PM
Sep 2022

You just have no idea what it means to have those words said to me/us.
We found out that her brother is only a 50% match, so they are trying to find a donor from the pool. That being the case, we don't know when it will happen.
As far as getting a caregiver, we have a lot of kind people helping us search and we have cashed out our 401ks to help pay for any that we find. As they say, ONE DAY AT A TIME.
Thank you again.

moonscape

(4,664 posts)
15. Very sorry about her
Sun Sep 4, 2022, 08:12 PM
Sep 2022

brother not being a match . How extraordinarily stressful.

Hope they find one for her soon. Like tomorrow soon.

Dark n Stormy Knight

(9,760 posts)
19. Oh my goodness, I wish I knew of something that would help!
Tue Oct 25, 2022, 12:42 AM
Oct 2022

Kicking for visibility.

My heart goes out to wifey & you! I wish you both comfort, ease, joy, strength, and health.




Imagine if all the money & energy that was spent on war had been spent on finding cures & on other ways to help people...

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