The (not so) Hidden Costs of Caregiving

Posted by Scott, Volunteer Mentor @IndianaScott, Nov 20, 2019

AARP just ran an article in their Bulletin with the above title, but lacking my parenthetical expression. The article is a compilation of caregiving factoids relating to what AARP refers to as 'hidden costs' of caregiving. I generally like AARP, but between you and me, after reading their caregiving articles I always wonder if anyone writing about caregiving for AARP has ever been a caregiver or had any firsthand caregiving experiences. I found this espeically true with this article since what they call 'hidden' are out there in plain, painful sight to every caregiver I have ever met! So without any further of my own editorial comment, here are the highlights:

1. "You face unexpected ongoing costs. 78% of caregivers pay out of pocket for costs associated with caregiving, averaging $7,000 a year, raising to $12,000 a year for those living more than an hour away.

2. You find it harder to build wealth. 25% reduce their retirement savings while 23% take on more debt.

3. You skimp on your own needs. Caregiving forces people to cut back on: household maintenance (37%); clothes and personal care items (30%); groceries (25%); utilities (12%); and education for their children (11%).

4. You sacrifice your own work. 32% of caregivers have left a job because of the overwhelming demands of caregiving.

5. You pay less attention to your own health. Saying over the prior 12 months caregivers gave up 36% dental care, 35% routine or preventive care, 33% a recommended test or treatment, 31% going to the doctor when ill or injured, and 28% filling a prescription for themselves."

Two things stuck out to me in this article. First, as I said I find it shocking AARP thinks these costs are hidden when every caregiver deals with them! Second that once again a caregiving article ends with the all too common Pablum of suggestions on how to 'get relief', none of which actually address the previous five costs. AARP rolls out the usual 'get help from others', look to government resources, and ask HR for the resources they offer caregivers. If only it were this easy!

I am not sure about other caregivers here, but I experienced all five and they certainly were far from hidden in my life!

Your response was exactly what I thought when I read it. And there are anymore. And the "easy?" about government sources is a misnomer. It is very difficult and time consuming and then when you finally get it, they constantly want you to complete another report or withdraw it with no communication at all. VA is very bad about this with their pension department. I really thought the medical help was excellent in our area (Iowa) but the Pension department in Minneapolis never responds or sends a letter that is dated a month earlier and the "deadline is tomorrow."

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@rmftucker

Your response was exactly what I thought when I read it. And there are anymore. And the "easy?" about government sources is a misnomer. It is very difficult and time consuming and then when you finally get it, they constantly want you to complete another report or withdraw it with no communication at all. VA is very bad about this with their pension department. I really thought the medical help was excellent in our area (Iowa) but the Pension department in Minneapolis never responds or sends a letter that is dated a month earlier and the "deadline is tomorrow."

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Spot on, @rmftucker I cannot count all the hours and hours and hours and hours and…. (you get the idea) I had to spend, I'd say waste, fighting denials of insurance, arguing with pharmacists who disagreed with my wife's physician over her care and medication regimens, and writing letters asking for a reviews of the insurance company's decisions!

It took me awhile before I finally came to peace with the fact 99% of my insurance submissions would be denied the first time around!

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According to one of my husband's physicians, you need to include specific words for a request to be approved. If these words aren't there an application is trashed. This means you need to know someone who knows the words, a challenge in itself.

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Thank You
This is 100% a true fact. Others in our lives have no idea of the cost of care-giving and the life we have been forced to give up and would not care if they did. My husband; in my case thinks funds are endless and his answer to all of his financial needs: I have investments! He cannot perceive the absolute necessity of very wise and controlled spending. He lives in a care facility and was diagnosed with bvFTD in 2017; an impossible and cruel disease to manage. I am not sure where I am suppose to get the funds to sustain my own needs and enjoy my life.

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@harriethodgson1

According to one of my husband's physicians, you need to include specific words for a request to be approved. If these words aren't there an application is trashed. This means you need to know someone who knows the words, a challenge in itself.

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So what are the right words to use?

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I don't know because they vary with the condition. All I know is that a member of John's health care team said she was going to include all the right words in her letter to Medicare so he couldn't be turned down. Also, it's common for requests for electric wheelchairs to be denied the first time around.

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@IndianaScott

Spot on, @rmftucker I cannot count all the hours and hours and hours and hours and…. (you get the idea) I had to spend, I'd say waste, fighting denials of insurance, arguing with pharmacists who disagreed with my wife's physician over her care and medication regimens, and writing letters asking for a reviews of the insurance company's decisions!

It took me awhile before I finally came to peace with the fact 99% of my insurance submissions would be denied the first time around!

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Scott,
I’ve followed you since my husband was diagnosed with dementia in 2011 and have been amazed by your dedication and kindness to our community of caregivers. I imagine there will be a special place in heaven for you sponsored by all the people you have helped and given aid and comfort to. I wrote earlier this morning on the difficulty I was having finding a care facility for my husband of almost 50 years. I don’t have to say what a heart-breaking and gut-wrenching feeling this is. My question is has anyone heard of Senior Services of America and what can you tell me about the quality of their care. I’m particularly interested in The Lodge at Mallard’s Landing in Gig Harbor Washington. Can anyone help??
Talie

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@momkids

Thank You
This is 100% a true fact. Others in our lives have no idea of the cost of care-giving and the life we have been forced to give up and would not care if they did. My husband; in my case thinks funds are endless and his answer to all of his financial needs: I have investments! He cannot perceive the absolute necessity of very wise and controlled spending. He lives in a care facility and was diagnosed with bvFTD in 2017; an impossible and cruel disease to manage. I am not sure where I am suppose to get the funds to sustain my own needs and enjoy my life.

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Hi @momkids, welcome to Connect. Behavioural variant of frontotemporal dementia (bvFTD) certainly is an "impossible and cruel disease to manage." How do you protect yourself from your husband's assumptions that you have endless funds? I assume he doesn't deliver his thoughts kindly.

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My journey is so long and painful. Because my husband lives in a care facility I have the option to walk away from unhealthy conversations which is what I do. I had to learn how to converse with him to avoid his "bvFTD" rudeness which is simply taking the conversation in a more positive direction, which does not necessarily work. With his continued declined he has had a personality change and he is more pleasant these days. I'm thankful for that!

peggy

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@momkids

My journey is so long and painful. Because my husband lives in a care facility I have the option to walk away from unhealthy conversations which is what I do. I had to learn how to converse with him to avoid his "bvFTD" rudeness which is simply taking the conversation in a more positive direction, which does not necessarily work. With his continued declined he has had a personality change and he is more pleasant these days. I'm thankful for that!

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You have been at this for some time now, how are you holding up? I am glad you have found ways to deal with conversations. I am also glad you found a care facility you are comfortable with. My heart goes with you today.

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Hi, I worked full time and when I was a caregiver for my mom; the huddles I had to jump to take a day off and not get paid. The insurance company was the easiest to deal with. In addition, the money lost, the social security earnings lost and the job opportunities lost. For me personally, I will never regret it; it was an honor to take care of my mom.

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@lizny

Hi, I worked full time and when I was a caregiver for my mom; the huddles I had to jump to take a day off and not get paid. The insurance company was the easiest to deal with. In addition, the money lost, the social security earnings lost and the job opportunities lost. For me personally, I will never regret it; it was an honor to take care of my mom.

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It truly is an honor to care for a loved one. The memories I have of caring for loved ones passed, will carry me through my life. I dream of a day when society will value the time and advance we give up to manage it. I try to remember not to count the financial toll, but it can be scary sometimes.

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