High Costs of Caregiving for Loved Ones

[agoyer]

AARP has a new study about the money that family caregivers pay out-of-pocket when caring for loved ones. It shows 75% of the unpaid family caregivers surveyed reported spending over $7,200 of their own money annually to help care for a loved one. I know I spent much more than that. On average, family caregivers spend a quarter of their income on caregiving costs. 

The highest costs are household expenses (mortgage, rent, home modifications etc.) and high medical costs are a big factor also. Check out the report: Caregiving Out-of-Pocket Costs Study

The costs of caring can be overwhelming and financially devastating - I know because it landed me in bankruptcy after caring for both of my parents and my sister for more than a decade. It seems so unfair - we are trying to do right by our loved ones, we want to care for them and give them the best possible care and quality of life, but it can have such negative effects on our own finances.

AARP is working hard to find ways to help caregivers manage the costs of caring, for example, the Cost of Caring Act has been introduced in Congress that would provide a tax credit to working family caregivers.

How has caregiving affected your finances? Are you managing? Growing debt? Completely overwhelmed? Where does most of your money go - household expenses, medical care, paid caregivers...? 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving

 https://www.aarp.org/caregiving/financial-legal/info-2021/high-out-of-pocket-costs.html

[postman29]

Some people need to realize that sometimes THERE is NO choice! No one can predict the future. If a person has any type of compassion they would not walk away from parents if they need help, whether parents wanted it this way or not, whether the caregivers wanted it this way or not. There was no property or money to inherit. Maybe if there was we'd have more family help! We would have loved to go on with our lives and enjoy vacations but not at the expense of our parents well-being. The best part is that our parents knew and appreciated what we gave up for them, even if it wasn't their choice to need our help as they aged. We KNOW they would never have intended to burden any of us. Like I said, life happens. 

[agoyer]

@postman29 I also felt like my parents would never have intended for me to wind up in financial devastation caring for them, they really did all the planning they could. They even had LTC insurance, but the costs are just so high - especially for dementia - caring for Daddy at home for 6 yrs and 3 yrs before that in a senior community - costs were astronomical. Thank you for all you did for you're parents! 

[GailL1]

@postman29 

What is your definition of family caregiving?  A moral code?

I never said that people cannot CHOSE to be a family caregiver.

I never said we can predict the future.  Only prepare if possible.

Never said that people cannot help their parents in time of need.

Not everybody can make the choice to be a family caregiver - even if they might want to be one.

The definition of a family caregiver also varies in scope - because of my mother's condition even when I was a child, she could not make decisions for herself.  My father died, my brother died - so it fell upon just me to provide her care.  I did my best but there was no way that she would ever live with me - thus I spent time and energy finding her a nice and appropriate place to live at her different life stages.

She was happy and thrived until strokes took away most of her being and her care was 100% in the hands of others with my oversite; she was well cared for everywhere - from independent living to assisted living to the personal care home where she lived at the end of her life at almost 90.  

We have programs that help those that have limited funds and assets - Medicaid or if applicable, the Home and Community Based programs. 

For those that are more wealthy, they have the choice of many ways to help/provide for their parents

But for those who have too much in money or assets yet aren't wealthy - it is either pay and spend down that money and assets - to then qualify for government help or the family has to step up - in pay and/or in time and effort or both.

Don't know where the "inheritance" fit in - if the patient has assets or money why would a a tax credit for the family caregiver even come into play?

I think you and I have a disagreement over that word "responsibility".  

Do you think everybody should be required to have that particular sense of responsibility?

I just don't feel that my kids have any such responsibility to me.

[postman29]

Gail1, 

My definition of caregiving is none of your concern. We do differ on the definition of responsibility. I am well informed on Government programs for any help that we need. I'm happy for you that you are in such a great position that you don't feel that your kids have any responsibility for you. But we aren't all that fortunate. I'm so sorry that my parents and in-laws didn't share your opinions. But neither do I. I was once again just expressing my opinion-whether you see it or not your responses DO make it sound like my parents and in-laws weren't as "intelligent" as you in preparing your their elder years. Everyone is different- and you need to get over it. I will no longer reply to your posts as they are condescending and garbage to me.

[Underbat]

Hello everyone,

Please remember to post according to the community guidelines, and refrain from insults and inflammatory comments

You must respect other posters even if you disagree with them

Thank you for your cooperation in making the AARP Community a safe and welcoming place for all.

http://community.aarp.org/t5/custom/page/page-id/Guidelines

[GailL1]

Amy,

I am confused here.  So I have a few questions about what tax changes are being supported here and would like some clarity so I can understand it better.

The way I am understanding this - 

1.  This could be purely the family caregivers choice to provide for these aged, incapacitated parent(s).   IOW, there would be another way already in existence for these aged, incapacitated parent(s) to get care but that is not the choice of the caregiver or maybe not the choice of the care-receiver.

2.  I thought there was already a way to deduct some of these medical expenses or receive some sort of a  tax credit.  AARP 03/04/2021 - Tax Tips for Family Caregivers  - Caring for a loved one could make you eligible for deductions and tax credits

3.  Medicare covers a lot of medically necessary DME - Medicare.gov - Durable medical equipment (DME) coverage   The ACA also covers some medically necessary DME.

When would the caregivers tax credit come into play - is it only when there is an expense actually paid for the patient?    would that have to be a medically necessary expense or only one that is thought to be that way?  Or would it be a sort of earned credit - giving some credit for a family caregiver to travel to and from the residence of the patient to clean it, prepare meals, fix medications, wash clothes, etc. just things so the patient can maintain a certain aspect of independent living?  Or care for them at the family caregivers home?

I know many family caregivers that are more hands-on than doing a lot of investigating into programs and services that can possibly help them financially and time-wise.  Or they don't understand the systems that are already in place and thus pay for things they don't really have to and just do it because it is much easier.  

It seems we are again talking about those patients in the middle - make too much or have too many assets for Medicaid help but make too little to pay for the care they need or want or what their family caregivers think the patient needs or wants.

I am not trying to be cold or ornery, I am just confused here. As I have said before here and got some real repercussions - For me, I do not want anybody to stop their life for me and I have made plans along that line. 

I still feel this is a choice for the family caregiver - it doesn't have to be this way; other arrangements could be made in most cases.  OR can they?

I spent over half of my life as a guardian for my mother(officially).  That included keeping her as independent as long possible and then making decisions as to her care after that when her health really started to fail.   I took care of my husband who was diagnosed with terminal cancer at 57; I was 56 - we were self employed for over 38 years and our income pretty much stopped completely at the time he was diagnosed.

There was (1) time during all of this when my mother fell and broke her hip (she was deaf and could not hear anything that the medical workers, hospital and then rehab, was saying to her) and my husband had a lot of chemo and radiation therapies - it was palliative care since he had a bucket list to finish.  

I wasn't worried about finances - I was worried about my sanity cause it was quite a schedule I was keeping.

[postman29]

What a great topic. You are not alone. My wife and I have been caregivers for my dad (11 years) until he passed 4 years ago and had to step right in to become caregivers for her parents for the past 4 years. Our brothers and sisters chose to ignore caregiving responsibilities and left us on our own while they all went off to enjoy their lives, vacations, money, retirements, etc.. My wife and I had to put our own retirement plans on hold the past 8 years because the financial, physical, and emotional responsibilities have drained us. We even had to pay for a chunk of my father and mother's funeral costs! No other sibling bothered to help out but they sure have enjoyed many vacations! Selfishness seems to run in many families as we've found out from other people that tell us we are not alone. 

As far as being overwhelmed my wife and I constantly battle that feeling but we do so as a team. We are there for each other. both of us knowing that our parents deserve the best care that we can get them and give them. We have barely survived financially because of this; even paying for gas to take our parents to their many, many medical appointments over 11 years has added to our burden. 

In closing I will say this. Even when you have to place someone in assisted living the responsibilities do not end! You have to supply their personal care products, take them to medical appointments and surgeries, provide them spending money (for outings, bingo, haircuts, etc.), get them a few groceries, do ENDLESS paperwork, and most importantly, you have to be there for emotional support. You can't just drop them off and go on your merry way. Remember, someday it may be you who needs the help! Our love for our parents has taught us that.

[agoyer]

@postman29 Well said! I agree that everything we do is a choice, and some choose not to participate or step up to the plate to care for family members, while others do. Some sacrifice more than others. Some sacrifice in different ways (financially, emotionally, family etc.). 

It's wonderful what you've done and I'm so glad you and your wife have each other for support as a team - bravo! 

Also so important what you said about the costs - first of all the cost of care in assisted living or even independent living and of course nursing homes is higher than people think, and there are so many "extras". They add up fast. 

My parents did plan - they had LTC insurance, Dad had SS and two pensions, Mom had SS. It still wasn't enough. When someone has dementia, eventually 24 hr 1:1 care is needed (especially if you want them to have good care and quality of life). The costs go on and on. 

Like you, I did it out of love, just as my parents supported me out of love. I wouldn't have it any other way. Some don't feel that way, others have different care needs and the costs aren't as high. 

[postman29]

@agoyer- Thank you so much for your posts of support! I can truly appreciate what you also have gone through with caregiving for your parents and sister. You are a very caring person. I know that there are many more of us out there that know exactly what we go through. We've had many doctors, nurses, and just strangers tell us thank you for caregiving and that means the world to us. A lot of times we hear the expression "there's always one in every family" who will step up and do the right thing. Our parents worked hard to provide for us, and as you stated, "it was out of love" that we make sure they are well cared for, even if it means personal hardships. It is nice being a fellow AARP member with someone like you that gets it. Thank you again and I wish you the best of luck going forward! 

[agoyer]

@postman29 I can remember whenever one of my parent's doctors would comment that my sister and I gave them so much good care it meant so much to us! My Dad's eye doctor would comment every single time that my Dad was his only patient who had a family caregiver doing what I did.  I can also remember the fire dept guys - emergency squad - commenting on it for both my parents and I once overheard them talking about me to the ER doctors and what a great job I did and how well I communicated with my Dad and care for him - that meant the world to me! They see it all for sure! You hang in there and sending well wishes and support your way!!!

[KerenaH76230]

Hello. I don't know how to just add my comment so I am using the reply option here.

I did not have a current job when my mother passed away, since every aspect of my life had just flipped over and was gone.  It was 3 months after that and my mom was gone too.  My sisters and I agreed that we didn't want dad to be alone, so the solution was for me to move in.

    Several years went by and even though it was extremely hard and sometimes I really thought I should leave for my own sanity and well-being, I stayed.  I just knew deep down that I was to stay because pretty soon he will need a caregiver and something told me I was it.  So I stayed.

    I had no job cuz I had mental problems of my own and really didn't think I could hold a job for very long anymore.  So, I lived with dad and he took care of my necessities of living.

   I stayed with him a total of 12 years with the last 2 as caregiver.  Told that I was exceptional and that my dad received better care than if he was in any retired living place, in all aspects.  That might be true, but after his death I have struggled to just live.  I am a single woman in my 50s, homeless and disabled since that time.

   Getting back to the cost of my caregiving for my father.  It didn't cost me money, it cost pretty much my life.  I was worse mentally and I developed many physical problems to the degree I am today.  Thank goodness for food assistance and the Oregon Health Plan!  But all other aspects of "help" were and are slim to none for a single person.

   It dropped my quality of living to almost null but I have felt fortunate and blessed at the same time to be able to have lived in my van, which dad willed to me, and to be able to park at my church parking lot with an extension cord so I had electricity.

   That was approximately 5 years ago and things are looking up. Can't wait to have a life and a home again. I still sometimes wonder if it is really going to happen. But I have a tentative move-in date of Sept 4 for my 1 bdrm apartment under Section 8 and I am deemed disabled receiving ssi benefits only.  I couldn't get credit for all the work I did as caregiver for my father since he was a WWII veteran, which made it exempt from taxes, so in turn it didn't count as work. So I could only file for ssi, instead of ssid.