Expert Series: Respite: Caregiving fatigue and help when you are a caregiver. May 6 - June 2

[AARPTeri]

Caregiving Expert Series focused on respite care and how to take a breather while a caregiver.

Expert:  Amy Goyer, Author, Speaker and Expert

Dates:  4 week AARP Expert Series:  May 6 – June 2, 2019

• Week 1: What are the signs of caregiving stress?  Where can I get help?, May 6-12, 2019. https://community.aarp.org/t5/Caregiving/What-are-the-signs-of-caregiver-stress-Ask-your-questions-g...
• Week 2:  How can I get a respite break from caregiving?  May 13-19, 2019.  https://community.aarp.org/t5/Caregiving/How-can-I-get-a-respite-break-from-caregiving-Ask-our-exper...
• Week 3: How can I be sure I have good quality care for my loved ones? May 20-26, 2019.  https://community.aarp.org/t5/Caregiving/How-can-I-be-sure-I-get-good-quality-care-for-my-loved-one-...
• Week 4:  How can I find local support and respite services? May 27 - June 2, 2019. https://community.aarp.org/t5/Caregiving/How-can-I-find-local-support-and-respite-services-Ask-our-e...

[agoyer]

Hi everyone! Please feel free to post any caregiving questions you have and I'll do my best to answer them. One of the most common questions I get from family caregivers is "how can I get a break? I need respite!" it's also one of the most common things caregivers look for online.

Join the discussion and share your experiences with respite care: Where do you get help? How? From whom? Have you had a tough time finding help so you can take a break?

Hope to hear from you! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

[JaneG76708]

Be aware that many younger people think they are experts because they have had a grandmother with progressive dementia or have an education like a MSW.  They have NO CLUE!!!!  Experts are those who have cared for a spouse 3-5 years who may even be unresponsive and violent in their own home yet no service or facility will take them.  Gero psych is no longer a place for evals as hospitals and medical schools have decided it is not profitable like ortho.  Talk with those who have had NO Options!  Costs are huge.  Just getting a referral takes several months to years.  If they do not state why they are an expert, do not listen!

[agoyer]

@JaneG76708 Hi Jane - I'm so sorry it sounds like you've had some very frustrating experiences and your load is heavy. 

Let me first say that all family caregivers have expertise - living through caregiving is really what teaches us the most. You are an expert too in many many ways. But you make a good point - I should have shared my background. I'm actually 58 years old and have worked in the field of aging for more than 35 years. I started out my career working in adult day centers and nursing homes. Then I worked for the Ohio Dept. of Aging for many years, then joining the AARP staff full time for 15 years, and I've been contracted as their family and caregiving expert for the past 10 years. During all of that time I was first a caregiver for my grandparents at the age of 21. My grandmother had Alzheimer's and I organized in-home services for her and my grandaddy for many years. Unfortunately they lived at a distance (one state over in Indiana) but I went frequently on weekends. I dealt with many systems and trying to get them care and services - too much to share here but believe me I learned a lot in my 20's. 

My Mom had a stroke when she was just 63, and again I helped fight for services for her for many many years. My Dad had Alzhiemer's eventually, and 10 years ago I moved to Arizona to take care of both of my parents. My parents lived with me and so I also experienced many difficult behaviors as Alzheimer's progressed for my Dad. Fought for much medical care, services and assistance for him and Mom and dealt with many systems including the VA all while providing from 60 - 90 hrs of hands on care for them myself. 

One of the most difficult times was when my fell and fractured her spine in 2 places - led to 40 days in hospitals, 3 surgeries, a heart attack, congestive heart failure, pneumonia, sepsis, a-fib and C. Diff. Nightmare. 

During all of that I was also caring for my sister from a distance - she had Cushing Disease. My Mom passed on in 2013, my sister in 2014 and my Dad just 1 year ago. 

I would never assume to be any smarter or better than any other caregiver - it's just a matter of offering help and connecting with suggestions and services. I've talked with thousands of caregivers over the years, hear and helped solve many problems. I bring that background to my job as AARP's family & caregiving expert. 

I hope this helps alleviate your concerns, but more importantly we want to help you deal with your spouse. Are you stll caring for him? Can we help you connect with any services or assistance? 

Take care - I know you are under crushing stress and just trying to keep your head above water. I know the feeling.  

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

[JaneCares]

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@JaneG76708 wrote:

Be aware that many younger people think they are experts because they have had a grandmother with progressive dementia or have an education like a MSW.  They have NO CLUE!!!!  Experts are those who have cared for a spouse 3-5 years who may even be unresponsive and violent in their own home yet no service or facility will take them.  Gero psych is no longer a place for evals as hospitals and medical schools have decided it is not profitable like ortho.  Talk with those who have had NO Options!  Costs are huge.  Just getting a referral takes several months to years.  If they do not state why they are an expert, do not listen!

---

Hi Jane! Hi from another Jane!  Sounds like you've encountered people who you hoped would be helpful but definitely were NOT.  I totally agree that we all need more geriatric psychiatrists, and there are darn few of them, even in big urban areas. Our entire health care system is rigged to profit from procedures and not from careful discernment, diagnosis and nuanced treatment of mind and body. 

I used to be a geriatric care manager, (and i confess i have an MSW.) I would get assigned to situations where the patient with dementia had been fired from assisted living, or was otherwise too violent, too difficult to stay in any setting. Those were terrible situations, especially if there was no money to hire personal care aides or any extra services. Somehow with the help of my team, which had very seasoned social workers on it, we would come up with a solution.

So many have no clue. How did you come by the clues you've gathered? Our expert here for the past few weeks is not super young (although i am 60 and i'm pretty sure she's younger than i am), and she's been through her own deep experiences of caring for her parents. You sound angry and disappointed in your post. It's not just the 'experts' who've disappointed you: it's the entire long term care system that left you with few options. I'm so sorry you've experienced this kind of disappointment, and it sounds like you're still caregiving.

Share more?

Jane

[TourbandungI583714]

thanks for sharing

[RamonaC779913]

Hey need some words of wisdom i caretake an elderly friend and she runs me ragged ive a sick daughter whose husband has a brain tumor and both her childrens go to the childrens hospital on a regular almost weekly visit 148 miles from home the lady i take care dosnt understand i have to help them to and i only get pd for taking care of her 23 hours aweek and im there at least 60 hours aweek and she just keeps demanding more im physcially and emotionally exhausted any suggestions would be greatly appreciated thnx so much

[agoyer]

@RamonaC779913 I can imagine how exhausted you are! You sound like a super woman but no one - NO ONE can do everything I've cared for multiple at one time too, so I understand how it feels. I had to learn that I can do anything but I can't do everything. I echo @JaneCares comments. It sounds like you are being taken advantage of if your job is eldercare for 23 hrs/wk and you are spending 60+ hrs. It's hard to set boundaries, especially if she is a friend as well as a client. But you don't need us to tell you that you will eventually get sick yourself if you keep overdoing it. Have you contacted the local area agency on aging to find out what other options for care your friend/client has? Even if she got periodic respite care that would help. She may be eligible for free or sliding fee scaled respite care (based on income and ability to pay).  If she hasn't already had one, I'd suggest she/you request an in-home assessment to determine any other assistance she might be eligible for. You can find the local area agency on aging (AAA) by going to the Eldercare Locator and put in the zip code. You'll get a list of agencies and the AAA should be listed there. Give them a call! They can send someone to do an in-home assessment (and it should be free) and then help set up services as needed.

For your daughter and her kids and her husband, that must be a really tough situation and I'm sure you want to help all you can, but time is limited and you need to work also. Are you primarily babysitting the kids or helping with transportation to the hospital which sounds like it's at a distance? I'm wondering what other support your daughter has?

Please let us know how you are doing - we'd love to hear back from you! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

[JaneCares]

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@RamonaC779913 wrote:

Hey need some words of wisdom i caretake an elderly friend and she runs me ragged ive a sick daughter whose husband has a brain tumor and both her childrens go to the childrens hospital on a regular almost weekly visit 148 miles from home the lady i take care dosnt understand i have to help them to and i only get pd for taking care of her 23 hours aweek and im there at least 60 hours aweek and she just keeps demanding more im physcially and emotionally exhausted any suggestions would be greatly appreciated thnx so much

---

Hi Ramona,

You sound VERY busy! Your elderly friend is very lucky to have you, and at the same time, she definitely needs to let you live the rest of your life. I'm guessing it's hard for you to say no to her. You get paid for essentially a half time job--- 23 hours--- and she demands so much more. It is not your job to do almost 40 hours more work per week for her unpaid, no matter how much of a friend she is. What have you tried to say? Does she start to cry when you say you REALLY have to go now? Does she get angry, passive aggressive, vindictive? If you are getting paid, then perhaps the agency that you work for can help her find additional help. If she can't afford more help and the 23 hours is paid by Medicaid, then where is her family? Maybe she can't be maintained in her own home? You are a caregiver, not an indentured servant.

Your daughter is sick, and her husband has a brain tumor? Goodness! That alone is a huge drain on  your heart, as your grandchildren are dealing with a lot, and your daughter is struggling. Is your son in law going to make it? Is he in the hospital still? Is there a social worker you can talk to about their situation, and how to support them?  You need to support yourself as well. This is all very much too much for one person!

Please tell us more about your situation. What have you tried to help your elderly friend to understand? Who else can help you support your daughter's family?

My heart goes out to you. Please write more,

Jane

[agoyer]

@TourbandungI583714 Hi! What are your caregiving challenges right now? Do you need a break? Anything I can help you with? 

Thanks for joining us in the careging forum! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones