Adult Caregiving

[k508694b]

Hi, First I'd like to tell you that my name is Kelly.  I am now at age 56 and from the age of 23 I have been a personal care provider, first for my (then) boyfriend/husband.  He had 20 years on the job before he became paralyzed from the neck down.  For the next 24 years of my life I was it, his only care provider.  We got along financially because of his 20 years and his Suplimental Security Income.  The last 4 years of his life he had to spend in an nursing facility however, I was able to receive spousal support through a Miller Trust.  He passed away in 2015 just before our aniversary,  I was able to live from his life insurance policy for the next couple years, however I needed surgery and had to pay last year out of pocket over 25K in medical bills.  That wiped me out.  I could have lived off that for another two years!  My concern now is the fact that my siblings have left me to take care of my mother, solely.  Yes they are able bodied but one has basically washed their hands and the other two live further away.  Since my mother is now in my home and on hospice I need her income to survive on and one of my siblings is telling me that I have to pay it all back.  Really?  I can't leave her alone long enough to go mow my lawn therefore how does anyone espect me to hold a job?  I am already seeking assistance to file bankruptcy but all attorneys so far have told me I need an income to file.  I don't get it, if I had a job and money I wouldn't need to file for bankruptcy.  What are my options?  Someone told me that I could draw up a rental agreement and include utilities, food, and my services, is this true?  If so it would be extremely good news as I have now spent my entire adult life taking care of other people and now unable to financially take care of myself.  This is a double edge sword, someone please advise me......

[BernardH405716]

Hello,

I am currently in search of a Home Health Aide in Houston, Texas. I have been diagnosed with PD and now need assistance with day to day activities. I have 4 daughters who are there to help, but due to the demand of their full time jobs they are unable to be here during the day when I require assistance.I am looking for a someone that can help fill in the gaps. If you have any recommendation please feel free to leave a comment!

Thank you,

[JaneCares]

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@BernardH405716 wrote:

Hello,

I am currently in search of a Home Health Aide in Houston, Texas. I have been diagnosed with PD and now need assistance with day to day activities. I have 4 daughters who are there to help, but due to the demand of their full time jobs they are unable to be here during the day when I require assistance.I am looking for a someone that can help fill in the gaps. If you have any recommendation please feel free to leave a comment!

Thank you,

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This is a thorough discussion of your options, Bernard:  https://www.aarp.org/caregiving/home-care/info-2018/hiring-caregiver.html     I hope this will give you a road map.

How wonderful to have 4 daughters to help you. Daughters are the best. I read something somewhere that said the difference between needing a nursing home and staying in your own home is... a daughter. And you have 4!!

Have you got a financial planner or an eldercare attorney to help you plan out your financial future to pay for your long term care needs?  While you are as functional as you are right now, the sooner the better. Also, advance directives? You don't need an attorney to fill those out, and five wishes has an excellent living will/ power of attorney for health care to get you thinking. You can go over it with your daughters so everyone is on the same page.

I hope there are support groups for people with Parkinson's in your area. I once attended one with a client (I was the care manager for her) and it was a lively group. Might help you feel less alone with the whole business.

Would you tell us what you learned as you go about this process? We all learn from one another... Best of luck with everything!

Jane

[agoyer]

@k508694b Hi Kelly! I'm Amy, AARP's Family and Caregiving Expert and I'm a caregiver too. I'm exhausted just reading your post I can't imagine how you must feel! You've been cargiving very intensively for so many years - it's no wonder that you are depleted financially. 

I hate hearing that your siblings expect you to care for your mother and to also pay to be there for her. As you say, it doesn't make sense. A few thoughts...

• You might try family mediation - a trained family mediator, preferably one with eldercare mediation training, could sit down with you and your family members and help you work out an agreement. Mediation is less adversarial and the mediators are trained to work out arrangements that may involve compramises but everyone agrees.  You can find a mediator at www.mediate.com - again definitely one who specializes in family mediation and preferably one who focuses on eldercare mediation. This approach can work if you and your siblings are willing to do it. 
• In terms of a rental agreement - that might be a good approach if all can agree that your mother's money is for a) her room and board at your home and b) her care. You could find out what an average hourly rate would be for the care you are providing and apply that. The average cost of paying a home health aide is about $21/hr - more in some parts of the country and less in others. People pay less also if they hire caregivers directly instead of through an agency. But even if you cut that number in half and value your care at $10/hr (that's probably what I would do), I imagine your providing a large value. 
• In terms of your bankruptcy questions, a financial advisor/expert would need to answer those, but one thought is if you have a large amount of debt, the National Foundation for Credit Counseling has a good website and this article, Selecting the Right Financial Counseling Organization offers good tips to finding a legitimate financial counselor (there are a lot of scams out there so be careful). 
• Sounds like a caregiver support group might be helpful to you! If you go to the Eldercare Locator and put in your city and state and click on "search", you'll get a list of organizations. Look for the area agency on aging or any other organization that lists caregiver support. Call them and ask about any caregiver support programs, support groups, resource centers etc. in your area. In addition to a support group you may be able to get some 1:1 counseling or education about your options.

I hope these suggestions are helpful! Please let us know how you are doing and if you have any other questions!

Take some time to care for yourself too please - I know you know that's important - we all do (I'm a caregiver for my Dad who has Alzheimer's and lives with me too). But doing it is another thing all together! AARP has some great ideas and resources for taking care of yourself in our Family Caregiving website - Caregiver Life Balance. I look at it this way: my car can't run on empty and neither can I...I have to fill my tank too! Only you know what fills your tank best. Even if it's little things - go for it! I hope you are getting some respite from hospice so you have at least a little bit of time to do things for yourself. 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

[Jen]

Kelly, 

Welcome to the community and thank you for sharing your story with us. Not only are you wiped out financially, but it sounds like you are wiped out emotionally as well. We are here with you and for you. I've sent your note over to a few of our experts and I hope that they will get back to you soon with suggestions/advice. 

Getting paid to take care of a family member is the question we are asked the most. While you wait for more replies from our experts and the community caregivers, HERE is a link we put together on this very topic that may offer some insight.