Catherine Alicia Georges Named to Family Caregiving Advisory Council - Give her your feedback here!

[AARPTeri]

What caregiving problems are you facing with your loved ones? What questions and concerns would you like me to bring to the Family Caregiving Advisory Council?

Catherine Alicia Georges would love to get information from you that she can share!  Post today!

[StephanieF161285]

My mom is in a SNF with Lewy Body because my sister and I couldn’t stay home with her and earn a living. Please don’t make it sound like if you have to make that choice you’re not a caregiver. It’s still taken over our lives because the facilities are not mandated to have dementia training, but it’s all Medicaid will pay for. Many caregivers are at home alone with their LO without any help or respite care. Without living wage pay when they’re taking the care burden from the State. Medicare needs to provide Home Health aids, nurses, PT/OT ongoing for LTC, not just after a hospital stay. Medicaid HCBS waiver programs for home care or AL/MC are broken! Its impossible to get home care agencies to accept them, no clear easy path exists. And pay rate for family choice care is way too low to keep people from entering poverty. Agency on Aging just refers to HHS and nothing happens, you make 100 calls and no one knows how to get you help. In most states no private facility will take AL waivers because of low reimbursement. Waivers need to be federally mandated so that every private AL/MC facility that accepts Medicare money needs to have a percentage of Medicaid waiver beds, not voluntary. All US SNF that accept Medicaid need to have fully trained dementia staff, not the one hour a year requirement. The new payment model reimburses them more for higher acute care than Dementia. Advocate for systemic change and better program management from the top down. These programs should have an easy website to apply, just like the ACA. All the Medicare/Medicaid money is going to profit not individual care. Focus on the waiver program for everyone. Many people would choose AL/MC if it was decent and accessible, but they need to be paid well in return if they choose not to. 

[JanR951935]

Catherine I have time and would like to help with this issue.  I worked as a BMPT in an institution and know some of the laws.  I also advocated and was a speaker for the epilepsy foundation years ago.  I also worked as a reporter and editor, I would like to help because I see so much despair and misinformation.  Kindly contact me if you think I can be of use.  I am freelancing from home now.  Therefore, I have the time to help. I also as you can see from my last post have been through this.

[JanR951935]

My husband and I set up trusts that were mirrored.  We were married 25 year, and both have children from precious marriages.  He was sick for 21 years of our marriage but competent, loved to travel, handled his own finances up to a few months before his death.  His children nor mine ever helped with his care in any way.  I was his caregiver and when he was too much to handle because of size and condition I hired 24 hour care and hospice as we had agreed.  As you can image this was expensive, but it was all paid.  When he passed the pour over will and trust went to me for my care when the need arises.  Even though he hadn't seen his daughter in 21 years she wants to know want she's going to get when I die and his son wants the money now without the conditions set up in the trusts.  I am bringing this up to discuss personal problems and I do have any attorney who is handling it.  But this taught me a lesson.  People don't understand pour over wills and trusts.  People don't realize that they are not entitled just because of being family,  People don't realize that if they don't follow the trust they can be removed from it especially if they are the succeeding trustee and won't follow it.  I believe that when trusts are set up they should be discussed because we wanted to make it easier for the surviving spouse to take care of themselves and not to waste money and time.  I thought of people who only have their house and limited means and could not afford an attorney and I think you should address this in a video.  especially for people with pour over wills uc shelters and trusts that don't require probate.  This is very confusing to adult children,  Thank you.

[atkinsonl]

I would like to be on the family caregiving advisory council.  I cared for my mom for 14 years before she passed away at 101.  I moved away from my family in Indiana to care for her in Florida because she wanted to remain in her own home. It cost my family thousands of dollars for me to be away from my Indiana home.  My husband drove to Florida many times and stayed a few days.  He repaired the villa and cars.  He waited for years for me to come home.  Finally he died before my mother died.  I  was under a lot of stress, keeping my mom clean all day, feeding her, lifting her out of bed.  My husband whom I talked to every night was dead.  Covid came and I couldn't even get a volunteer to come once a week.   Now my brother who did not bother to help is suing me.   Some how my expenses of caregiving and or pay for caregiving should be considered out of the estate.  I worked for nothing and gave up my job.  Apparently that counts for nothing.  Canada recognizes caregivers.  How about the US doing the same.  Linda Atkinson

[geri194256]

Good morning, I have become caregiver for my husband, he has many health issues.  He was recovering from a heart attack and was doing very well, then he fall, and fracture his hip and was in a nursing home for six weeks, he is home now and requires necessary care, it's very exhausting.  We do not have a polciy to provide an aid to come in at least one day a week to stay with him to give me some relief.  Is there a organization that could help me for a modest fee.  Thank you Geraldine Schatz

[dangelojh]

Hello Cahterine,

One of the biggest issues facing caregivers caring a relative at home is the nationwide shortage of healthcare workers. I have found that it is difficult to arrange respite care with home health aid agencies for the following reasons: insufficient staff to meet demand, unwilling to travel without an increase in hourly rate (paid by the care recipient), and high hourly rate charged by some agencies. In addition, there is the added challenge of vetting care gives that one could hire on their own (e.g. from Care.com).

Please discuss this point and possible solutions with the Family Caregiving Advisory Council.

Thank you,

Jim D.

[AnnaM935632]

My husband aged 77 began dialysis when he was in re-hab so was able to get his treatments.  However, his insurance coverage ran out and was literally kicked out of the rehab facility.  He was sent home and was unable to get out of bed.  I was therefore his care-giver.  The problem was there was no one that could provide transportation to the dialysis center and therefore after two month died from renal failure.  We desperately needed transportation both to a dialysis center as well as doctor offices.  Some day I pray there will be a better system for home-bound patients to get where they need to go for their medical needs. 

[mr8115]

I am 56 years old and I take care of my husband that was injured on 9/11, I followed my husband with my two daughters to a new state cause we were told we would be taken care off through Red Cross with medicail for me and my daughters.   When we moved we tried to get benefits for myself and daughters with the door slammed in are faces, my husband is taken care of well from the state of New York, but we lost are benefits once we moved.  So we were paying for everything for my daughters cause they were constantly sick and meds and doctors visits were draining our funds that we received.  For 4 1/2 years I have been working for me to have benefits cause I became ill and funds were running low, so I was able to receive Chips until they became of age that they no longer receive it. My oldest was able to get good benefits where she is working, but still had to join the FML group so she wouldn’t loose her job.  For me and my second daughter we were caring for my husband and my daughter also gets ill very bad and can’t leave the house to much.  So the two of have no insurance, my daughter my just some insurance but not enough to help with the lung infection she get and migraines a lot of times.   For me I have a bad back for taking care care of my husband for many years, and our doctor put in for home health for. Helping us.  But again no health insurance and I have been applying many time with Medicaid in the state of Texas and the doors are being slammed in our face when we were tp;d we will be taking care of due to we our 9/11 survivors.

[PatriciaW414854]

It's a blessing to hear someone that is compassionate and advocating for the support of caregivers!  I was a paid In Home Support Services (IHSS) /Provider/caregiver in California. I had to relocate to Las Vegas to take care of my mother after her recent health event that occurred earlier this year. My mother has to be watched 24/7 and is no longer independent.  To my dismay, after much research & phone calls to receive compensation, I was told that Nevada does not pay caregivers for taking care of their relatives, which leaves me with no income. I agree that this is not a one person situation, but a situation on a National level. I suggest that with a collection of signatures and/or whatever it takes, get a Proposition on the Ballot re: All caregivers get paid regardless of taking care of their loved ones or others. This will allow all Americans to have a voice, decrease the unemployment rate, the crime rate and keep our Nation from going into another recession.

[JanR951935]

Do you know if Florida does?  I have paid everything out of our pockets because I had surgery when he was ill and did not have use of my hands? 

[JulieF499017]

I would am POA for my mom and Step Dad. I am primary caregiver 24/7 for both. I would like to see POA's get paid for caregiving. I had to put my business to the side to take care of them both. No family members here and not willing to assist.

[de89718947]

There should be a way to get Medicare to help pay for family caregivers. I can't work and paying for respite care could be better. It's the only way I keep sane. My father is 95 and has demenia. It's really hard to make it work with our budget.  Let me know if things change and thank you for your work.

[s35557c]

1. Dear Catherine  thank you for the work you are doing  to benefit caregivers   I am a family physician for the last 40 years  .Now  I have to leave my practice to be caregiver of my 86 year old husband that develop dementia getting worst.
2. He is a veteran and any help that they give is a long delay. I am waiting for stair Glyde for more than a year and still waiting
3. After 2 years waiting for bathroom for disable they approve and they start last friday  
4. Please notify me to whom I I have to speak un Veteran Health in PR

[drbeef]

Someday i would love to tell my Story too. I had just finished Medical School.. Never got a Chance to say Thanks to my Father for helping me through Medical School. He was Brain Damaged during Heart surgery. Was a Veggie and in Coma for 18+ years. Lost Our House. I quit Medicine to Help and Take Care of Him so That My Mom and Sister would'nt live on a Street. That was a Long Care Taking Experience and, that is a very Short Explanation of what else Happened!

[jimp861426]

Catherine i am retired but have a full time job , taking care of my self and my wift, 9 years with Parkinson and 3 yrs with lung cancer, she is going ok , but i know what it feels like , when you can't get any help. sometimes when we are  in the donut hole , her meds cost around $400.00 per mo. i don't have any extra money but i can call and mail people. Jim

[HelenaS892006]

Hi Catherine, I am 61 years old & a full time custodian at a school. I am also a full time caregiver to my spouse of 35 years. He is the love of my life and 64 years old, who came down with Relapsing/Remitting MS 15 years ago. I am finding it extremely difficult to carry on life the way it is, so I have decided to retire from my employment next year to care for my husband full time. I wish I could get paid for my caregiving, yes, I realize my husband could pay me out of his disability check, but that would be defeat the purpose of getting paid & maintaining our bills.  Spousal caregivers work very hard at trying to maintain every aspect of the home, property, relationship, bills, & self sanity. Also, depending on where you live, depends on the services that are available. There needs to be a better way to care for those who can't take care of themselves & still carry on. We've worked all our lives & looked forward to our retiring days & MS has just kicked us to the ground. Life is hard enough.

Helena Smith-Franke

Springdale, WA 99173

hsfwildtrax@gmail.com

[a380324d]

Could you set up a list of gerontologists that one can go to when they see problems developing?  I live in Fredericksburg,VA and have no idea where to go as i see the beginning of dementia.  I know there should be help but where?

[eh6158]

In Wyoming and maybe Montana, there are few places for respite care and when we need it, it is expensive. It would be nice to use Medicare for 1 or 2 days a yr. My 92 year old mother is living with my husband and myself. She has not been in the hospital for the last 4 years because I take care of her meds. I did put her in respite care for 5 days while I had my hip replaced.  It is hard taking of her needs every day. My stress level is high and Then I get sick. If there is anything you can do to get just a small respite for caregivers, it would be very helpful.

[GailL1]

@eh6158 

Concerning respite care -

In 2019, some Medicare Advantage plans are now offering new benefits - respite care is one of them.

These new benefits are NOT offered in original Medicare only under select Advantage plans and are just now getting started - hopefully this will be successful all around and more plans will begin to offer them.

AARP talks about these new services here:

AARP 03/13/2019 - Family Caregiver Supports in Medicare Advantage Plans: New Opportunities for Perso...

For original Medicare, respite care is only offered under Hospice care

Medicare.gov - Hospice Care Coverage

[hdegan5]

I have been caring for my wife for the last 32 years. She had a massive brain stem stroke and was in the hospital for 5 months. I quit my job after 38 years to take care of my wife due to the cost of help. We raised 3 great kids and now have grandkids. I love my wife dearly, but could use some time off now and then. Is there a place I could find help for a couple of day at a reasonable cost. She needs help several time a day for different functions. We live in Montana.