two family caregivers asking for financial help

So many caregiving guides make it sound like there’s plenty of help to be had, if only caregivers would ask.

We know that’s not quite how it works.

Yes, some caregivers don’t ask for help and your chances of success improve if you ask the right way, but it’s a fact that lots of our requests for help will fall on deaf ears.

Or the ears of people who really would love to help, but are too busy that day. Some people just won’t help.

Here’s the story of real caregivers who’ve gotten help, how they got it, and how it worked out.

It’s worth it to keep asking and keep searching.

I have been wanting tangible help for years. I have tried to get VA caregiver respite and they say it is a long process, so try the county. I contacted my county, but unless you are broke and nearly homeless you don’t qualify — and if the receiver can handle most ADLs, forget it.

That leaves either pay $30 an hour or hire a kid. When what we need is some help with chores and companionship, $30 an hour is best saved for other things.

In 10 years the only respite I have found was through Lifespan Respite. They offered $1000 worth of time in a voucher, but that included drive time for the caregiver and the only women who could come was an hour away. We lost two hours worth of her service, but she was great.

But that was 3 years ago. I have yet to find a way to get a break. As the caregiver, I knew I would need help. Friends are great, but I wanted a helping hand from someone who could think in advance about what I might like — because a caregiver knows.

Yesterday I had help — but it became a major annoyance. Three guys all at once felt like it was a football party not a recovery room.

Nancy Lamb

I am parent and primary caregiver to my 26 year old disabled son. He was on the waiting list in our state of PA and after completing his schooling at 21, then was pulled from the waiting list and after a few months or so was approved for caregiving services in the home.

We went through 2 agencies and about 10 caregivers before coming to the conclusion that it wasn’t working for us. The caregivers were either poor in attendance, were no-shows, or actually fell asleep while on the job. We could not depend on them.

Now, I was approved back in summer 2016 to be paid to caregiver for my son. I went through the application process, job interview, training and am now an employee of a caregiver agency.

I really needed the financial support so this worked out. The only drawback is that I never receive respite. I only have my middle son to fill in for me when I need to leave the home to run errands.

The rest of extended family and father to my son has basically “checked out” of the situation. So it goes.

My son, Rob, has seizure disorder, Epilepsy and is both mentally and physically challenged. He falls into the Autism Spectrum and is officially diagnosed as developmentally delayed. He is homebound. His first seizure was at age 2 1/2. His physical body slowly deteriorated over time. He use to be able to walk and attend school and social functions until his late teenage years when his legs gave out and he couldn’t walk and eventually could not sit up.

He is mostly a happy young man with a great smile and a laugh that brightens up the room.

Barb Ward

When I ask for help, it’s asking for driving assistance to either a haircut or the dentist. If help is not available, I just rearrange my schedule. So far, I haven’t need ‘personal’ assistance in the form of toileting or grooming or walking-type help…but it’s coming.

So, I have no ‘helpless’ experiences other than those I create in my head. I’m fortunate, as my husband’s Atypical Parkinsonism is not acute enough to warrant daily assistance.

Melissa Batavia

My husband had a buddy who was a former coworker who would take him for coffee each weekday morning and sometimes on the weekends, too. He was retired and probably felt obligated to do something for him.

After my husband was released from the hospital he had outpatient and home visiting therapists and nursing. He performed well for the therapists, but  didn’t follow through on his own. He had two times that he was sent to care centers near the end of 2015 and almost used his 100 days covered by Medicare because of silent aspiration pneumonia.

The county supplied a senior companion. He worked out great, he had been a CNA, knew about electronics and got a DVD and earphones set up for my husband. They got along great. My husband was against the idea of a senior companion at first, but once he met the guy he came around. The company he was working through went out of business. Before we could arrange for him to come back through a different company my husband was back in the hospital and passed away.

I asked for help and didn’t get any more times than I can get into.

People tell you to let them know what you need, but come up with all sorts of excuses when you ask for their help. No one truly understands your situation unless they’ve experienced it themselves.

Catherine Ford-Barbiero

My favorite way to find help is by hiring someone whose personality is a caregiver personality but who is not a CNA/Medical type caregiver. The people that I have hired this way are now friends of mine and helped my Dad get through some very tough times with his Lewy Body Dementia.

Joy Meason Intriago

I do not get any help at all in being caregiver for my dad who is 78.
Because he retired from the railroad and does get enough benefits to
support himself. However those benefits do not provide any help for me, his caregiver.

Just recently my son qualified for an IFS Waiver, which allows me to get paid to be his caregiver. However the maximum hours I get are 37 hours a month.

Mimi Leow

Some responses have been edited for grammar and clarity.

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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  1. No too many organizations say they are here to help , but are only lining their own pockets. When insurance runs out they are gone.

  2. Not unless you’re wealthy. Every senior organization around here claiming to be supportive is just that – so long as you have a deep enough checkbook. It’s insane

  3. Fortumately, for us we could afford a caregiver. However, in my experience I learned of many who could not which saddened me. Here are a few suggestions to seek care/respite for caregivers. 1) Alzheimer’s Association, 2)Caregiver Resource Center, 3), 4) look into your states Family Medical Leave Act, 5) VA, is tough but finds, etc is available, 6) Hilarity for Charity, 7) if your loved one has a Long Term Care Ins, some offer caregiving. Good luck and keep the Faith.

  4. When i applied with the VA for widow veterans help for my 84 yr old mom a vet volunteer helped we sent everything they needed which went on for a year and then they would send me a letter saying certain Docs they didn’t get which we sent , they were playing the Bureaucrat game they had no intentions on approving anything Shame on the Government!!

    • Was that the Veterans Pension For Aid and Attendance ..
      I got it for my mother in law .. it took about 6 months but was retroactive to the original application date ..
      so sorry

    • I’m not sure i thought it was for extra money for expenses for everyday needs it’s so expensive from depends to supplements scripts etc.

    • Thanks for the information Theresa Marie Loder i will look into it! My mom has Dementia which has got worse in last few months i have been taking care of her for almost 7 yrs after my Dad passed she also has Copd, Congestive heart failure and a Chron’s and the last 6 mos she can’t control her bowels i had to quit my job 3 yrs ago because she was outside wondering it’s very hard.

    • Theresa Marie Loder –wish I’d had known they could have done that in our case .I had to come up with over 5K while they dragged their heels getting my mother-in-law’s late hubby’s 100 disabled war veteran entitlements in place for her…

  5. SORRY FOR THE LONG RANT! I have been a caregiver for over 35 years. With my military training and also taking care of others as well as My father back in 2008 4 days before he died because no one in the family stepped up. ‘YOU KNOW WHAT TO DO, YOU’VE BEEN TRAINED” For the past 6 years, I’ve had all kinds of medical issues and surgeries. Now, I’ve been DX with Uterine Cancer. I expect no one from my family to help! They didn’t come when I had my Bilateral hip surgeries, or any other! Just myself and Chuck. Thank God for him! My EX would never do anything like this for me. THANKS TO THE VA WHO MADE ME WAIT FOR MY MEDICAL CARE! I HAVE NO INSURANCE EXCEPT FOR THEM. STILL FIGHTING TO GET MY DISABILITY $$$ FROM THE BACK INJURY I SUSTAINED SERVING MY COUNTRY. IT DOESN’T PAY TO GET OLD! I love my kids and I just can’t make a burden on them even though I took care of them. So, I’m hiring someone till I recover from this next surgery IF I don’t die.

  6. been dealing with it for 27 years… is impossable and no one but the ones going through it care

  7. Mountains of paperwork–sell your soul to the devil–then get a person that has no idea what clean these 3 rooms means. 4 different aides 3 months and the curio behind my chair still has not been dusted.. Not to mention the constant changes to day and time.

  8. My experience: No.
    My hope: yes
    People: disappoint
    Reality: probably not unless you family or encounter a rare gene- a person who cares for others

  9. Friends and family 99% of the time no…Had to realize I was out there on my own. Took care of my mentally ill brother with cancer for years (who passed away in May) and I tried to research and utilize as many available programs as possible. Example in Northeast Ohio through Area on Aging they have a respite voucher program. Work with your doctor(s) on getting paid aides, PT and nursing help at home, not always easy but worth the hassle. Also check PACE programs in your area. A “GOOD” caseworker can help you navigate the system but unfortunately good caseworkers are few and far between…especially hospital caseworkers, found them useless! I also found you need to be a LOUD! squeaky wheel and don’t stop pushing for services for your loved one(s). Trust me, I have pissed off my share of Hospital, Healthcare, Medicare, Administrators, VP’s, Doctors, Nurses ( the list goes on and on) to get my brother the care he needed and deserved. I feel your pain and wish you the best on your exhausting, thankless and many times lonely journey.

  10. Don’ have the time to jump through the hoops.

  11. No on all levels. From your inner circle to the @#$_&-++ insurance. With that being said I just lower my expectations to 6 feet under. I accept things I can not change. Then I hold my head high and my middle finger even higher. Then I do the best damn job I can.

  12. Nobody cares unless it’s from a distance…

    • Katy that is because you’re my beautiful cousin.. love you xx

  13. When I try to ask for help or at least ask someone to stop by for a visit, I get ALOT OF EXCUSES of why they can’t or don’t even bother to show. And I bet if it weren’t for home health care I’d still would have been doing things alone..cause I really needed it.

  14. No. Ppl say they will help. But they don’t really mean it.. it sad but true.

  15. I find help to be only if you have the funds to pay someone and even then, it is questionable.

  16. That is where I’m lucky because i have neighbors that do help.

  17. Certain Agencies,Churches and Groups.

    • Only of you’re a member, otherwise…

  18. It’s very hard. I hate when people ask, “what do to need me to do?” And you tell them… And they get nasty about it. Just help mow the lawn for me, ok?! Lol

    • I agree’s like they get an attitude cause they have a life & you don’t or cause they have a job & family & act like you don’t..U know what I mean

  19. No. It’s not possible. People say they’ll help but they won’t ever be available when you need them or they’ll agree to help and not show up.

  20. Has anyone else had this experience? You ask for help because you are exhausted…almost beg at one point…The one you ask for help, gets angry with you(how dare someone ask them, right?) then you find out they are telling everyone they know, that you(Caregiver-Adult child) won’t let anyone help…and that you keep pushing them away so they cannot help???? Does people really believe that??? They want to shift blame for being selfish and neglectful. People would have to be completely ignorant to fall for that lie!

  21. I’ve found nobody wants to help “unless”they get paid to do the cares

  22. The caregiver may need or want help; but those being cared for don’t want any strangers in or around the house.

    • My Mom!

  23. I actually feel too discouraged to even read this.

  24. This was depressing to read. My favorite quote:”People tell you to let them know what you need, but come up with all sorts of excuses when you ask for their help. No one truly understands your situation unless they’ve experienced it themselves.”

    • If I could “like” your comment a million times I would. No one knows unless they walk a day in your shoes.


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