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Re: How Do You Ask for Help?

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@MaryA862513 wrote:

I’m getting really bad... workmans comp.... no help... husbahas tp work... I can’t... permanently disabled.... daughter on with life and other kids.... in New Jersey can’t get help from family and they get paid.... can’t see or speak or walk well.... fall all the time and go almost all surgeries and appointments alone... dangerous.... any suggestions... Uber/lyft getting expensive thanks


MaryA, you sound pretty desperate. 

One of the challenges of being 'permanently disabled' is that you and those who care about you have to think outside of the 'normal' box and make some serious decisions. This is tough to do. But you by yourself struggling, falling, and suffering, is not acceptable, not okay. So, i'm going to make some suggestions to help you consider more options. 

 

Money... makes the world go around... Does your husband have access to FMLA, family medical leave act protection at his job, which allows him to accompany you on your appointments? First he'd have to take leave, and then when he runs out of that, FMLA allows him to take leave without pay but have his job protected so that he can take a half a day off now and then to take you to and from appointments. If you are not talking or walking well, I also imagine it's hard to manage just about any aspect of going to see a doctor or physical therapist. So, is this possible?

 

Also about money: can you and your husband sit down and look at your finances? Can you afford a home health aide even just once a week? The aide could take you out of the house, get you to and from the doc, give you a marvelous bath, be a companion?

 

Have you applied for social security disability? It's a big process, but it starts with a phone call to this number, 1 (800) 772-1213, and that's how you get the ball rolling. With that income, you can consider hiring help.

 

If you are very low income now, you are eligible for state help most likely, and the Area Agency on Aging that Amy suggested will direct you and your husband to where you need to apply.

 

How about social support? Your daughter may have kids and a lot to do, but what if she made a trip for a weekend or a few more days than that, and helped you set up your situation better? Made calls with / for you, simplified your home so there are no rugs for you to trip over... Do you belong to a church? Do you have friends who'd be willing to come visit for 2 hours and help you fold laundry? I'm thinking that its important to cast a very wide net when you are disabled and needing help, so that no one person feels burdened. It's hard to ask for help, hence the title of this thread.

 

What else comes to mind? Does any of this give you an inspiration? Please write back. This is tough but you are not alone...

 

Jane

 

 

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Re: How Do You Ask for Help?

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@MaryA862513 I'm so sorry you're having such a rough time - you must be exhausted. Have you been in contact with your local area agency on aging to ask about any free or siding fee scale transportation options, escort (people who will drive you and go in to doc appts with you to ensure your safety and take you home afterwards), and other home-based care you might get? Even if you're on Medicaid and NJ doesn't have the "cash & carry" program so you can choose caregivers, are you eligible for non-family caregivers? 

 

You can contact your local area agency on aging to ask about an assessment and referrals by going to the Eldercare Locator at www.eldercare.acl.gov and put in your zip code, then look at the list provided for the "area agency on aging". 

 

You can also ck the Community Resource Finder at www.communityresourcefinder.org and search there for transporation and other options. 

 

Please let us know how else we can help! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

 

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Re: How Do You Ask for Help?

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I’m getting really bad... workmans comp.... no help... husbahas tp work... I can’t... permanently disabled.... daughter on with life and other kids.... in New Jersey can’t get help from family and they get paid.... can’t see or speak or walk well.... fall all the time and go almost all surgeries and appointments alone... dangerous.... any suggestions... Uber/lyft getting expensive thanks

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Re: How Do You Ask for Help?

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@ld6653 My heart goes out to you across the distance! It sounds like you are in full-on burnout - there are many red flags. @JaneCares had some excellent suggestions - especially about finding counseling that you can afford. Are you currently on Medicaid? If so, perhaps a case manager could help you find someone? 

 

As humans, we are limited - as much as our minds want to go on and on, our bodies just can't take it. It's not selfish to do some things for yourself, it's just practical. A little socialization (perhaps a local caregiver support group you could go to once a week - or even once a month - that would provide socialization and education and support all at once? You can look for a local group any/all of these ways:

  • Contact the Parkinson's Foundation by clicking on that hyperlink (click on "Parkinson's Foundation") or calling 1-800-473-4636
  • Contact your local area agency on aging (AAA) by going to the Eldercare Locator at www.eldercare.acl.gov or calling 1-800-677-1116 and putting in your zip code. Call and ask about any caregiver support resources they have for you, including a list of local caregiver support groups. Even if you and your partner aren't in the "older adult" age group the AAA usually has a list of support they can share with you and some of their services may not be age-restricted. 
  • Check the Community Resource Finder at www.communityresourcefinder.org for a variety of resources.

I hope this resources are helpful to you and that you get some counseling, connections and support. We are here for you too!

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

 

 

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Re: How Do You Ask for Help?

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@ld6653 wrote:

 I am the sole caregiver for my partner of many years. He suffered a major heart attack at age 32 and has a mechanical heart valve. At age 37 he suffered a major stroke, leaving him with right side paralysis, aphasia and cognitive issues. At the age of 41 he was diagnosed with Parkinson's disease. He is now 46. I get tired and depressed. I am on antidepressants. The only help I have is a Recovery Assistant Monday-Friday for 5 hrs. This gives me a chance to get my errands done and appts for myself. I bring him to all of his appts, and he has many. I bring him to PT, OT and speech. He is also under the care of a psychiatrist for his bipolar disease. I have not even been close to having a vacation since 2011. I know that I should be seeing a therapist but I haven't for about 4 yrs. My insurance copay for a therapist is more than I can afford anymore. I don't have friends and do not involve my siblings. They were never a fan of me taking Chris home. I keep everything bottled up because nobody wants to listen. I take him to the best Drs. and he has done pretty well adapting to his life. I've adapted but barely hanging on. I was told that because Chris has some help in the home, he does not qualify for respite care????? I'm his 24/7 caregiver and I feel that nobody gives a care about me. I live a very lonely life. 


Hi there. I gave you kudos because you wrote. That writing is a major 'asking of help.' I read your post and said WOW. I have a few thoughts, and say to you, take what you like and leave the rest.

 

You are certainly very devoted to your partner and he had done nothing but benefit. He has the highest possible quality of life, given his stroke and Parkinson's, because of you.  But. Caring for him all these years is taking a big toll on you. You have to care about yourself, and take some steps. And that will take a bit of energy that you might not feel you have right now. And that is a sign of depression.

 

What money does he have coming in that you could use to help you get some therapy, to pay for copays? is he on SSI?  How are you supporting yourselves? Does he have any family at all? Whatever family he has must be very grateful to you for caring for him all this time. Would any member of his family be able to help in any way, either by giving you a break on a weekend or evening, or financially? 

 

Have you approached a therapist and asked if you'd be able to get a break on the copays? I'm a therapist at a local hospital and i have the power to do that, to waive the copay. Some people offer a sliding fee scale. It will take multiple phone calls, but it will be worth it, because you need an outlet, each week. Someone who'll listen to you with compassion, and help you slowly figure out what to do. 

 

Social isolation is bad for your health, as bad for you as smoking cigarettes and eating a tub of lard everyday. Your partner may be wonderful company, no joke, but you can't put all your eggs in his basket: it's not enough. 

 

Once you have a regular place to take your feelings and thoughts, a path forward will slowly emerge. But you need to feel some hope that there IS a path forward. 

 

Parkinson's is a progressive disease. As good as he's gotten at this point, he will deteriorate. Aggressive therapy and good care will slow that. But is this what you are meant to do for the rest of your life? I'm just asking. There is a world out there that can take care of him, a system that is far from perfect but that is set up to do that. And you can visit him and advocate for him without being on duty 24/7.

 

Just throwing ideas out there. What do you think? Please write back and some more.

 

Jane

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Re: How Do You Ask for Help?

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 I am the sole caregiver for my partner of many years. He suffered a major heart attack at age 32 and has a mechanical heart valve. At age 37 he suffered a major stroke, leaving him with right side paralysis, aphasia and cognitive issues. At the age of 41 he was diagnosed with Parkinson's disease. He is now 46. I get tired and depressed. I am on antidepressants. The only help I have is a Recovery Assistant Monday-Friday for 5 hrs. This gives me a chance to get my errands done and appts for myself. I bring him to all of his appts, and he has many. I bring him to PT, OT and speech. He is also under the care of a psychiatrist for his bipolar disease. I have not even been close to having a vacation since 2011. I know that I should be seeing a therapist but I haven't for about 4 yrs. My insurance copay for a therapist is more than I can afford anymore. I don't have friends and do not involve my siblings. They were never a fan of me taking Chris home. I keep everything bottled up because nobody wants to listen. I take him to the best Drs. and he has done pretty well adapting to his life. I've adapted but barely hanging on. I was told that because Chris has some help in the home, he does not qualify for respite care????? I'm his 24/7 caregiver and I feel that nobody gives a care about me. I live a very lonely life. 

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Re: How Do You Ask for Help?

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@PattiD438867 @LicketyG499198 

 

Replying to your post, Patti, and also LicketyG - And I agree iwth LicketyG - it's not a crock at all. We throw ourselves into the role of caregiver and it becomes a huge part of our lives and our identity. It is our primary focus and a the vast amount of our time is spent either providing care or thinking about it, planning, shopping, coordinating care etc. It's totally normal that it is a huge life change when caregiving ends! 

 

I have been a family caregiver my entire adult life in a variety of caregiving roles - for my grandparents, Mom (had a stroke at age 63) and then for both my parents. Mom died 5 years ago at age 87, Daddy just died 6 months ago (he had Alzheimer's and lived with me). It's not only been my professional orientation, it's been my personal mission. So I'm still very fresh in this life phase after caregiving. A few things I can share that may be of help to you:

  • There will always be someone else to care for Smiley Happy I find myself now in a different caregiving role for my aunt and uncle - helping my cousins, providing respite, advise, doing things like putting out all of their Christmas decorations for them (they were THRILLED!). I also have neighbors who need help.  I suspect there will be other people in your life whom you can help. Maybe not in the same intensive and primary caregiver roles you've been playing, but in other roles - which are also very much needed. You can also think about volunteering. Deliver home-delivered meals, volunteer in an adult day care or nursing home, become a friendly visitor to people who can't get out of their homes...you can contact your local area agency on aging (AAA) to ask about volunteer opportunities. Visit www.eldercare.acl.gov and input your zip code or city to find your local AAA. You might also consider volunteering with children. My sister, who was my partner in caring for our Dad for the past 6 years, has taken a job as a nanny - she is finding that taking care of children is a good change and brings joy to her life (she felt that caring for elders would be too close to caring for Daddy - we miss him terribly). 
  • When you've been a caregiver as long as you have, you learn a lot and you have a lot to share - your purpose may change but you still have so much to give. You've gained a huge amount of knowledge and you can share it with millions of other family caregivers who need help. Answering questions and providing comments here on the AARP online community is a great start! You could volunteer to mentor another family caregiver, providing moral support and coaching (contact the AAA to ask about that too). 
  • It's ok to focus more energy on yourself when caregiving is over. I'm honestly very slowly doing this - it's so foreign to me to be able to spend time on myself above and beyond the basic self-care I've prioritized while intensively caregiving. But I'm starting to do things I just want to do - not just the basic things I need to do! You can do that too. It's your turn  - and you can still keep giving to others while ALSO spending more time on things you want to do. 
  • Think about ways you will honor and memorialize those who have passed. I've created a memorial scholarship fund in my parents' name for a children's theater group they founded many years ago. Many caregivers wind up volunteering for the organizations that their loved ones cared about - or that were helpful to their loved ones in fighting a disease or condition (such as the Alzheimer's Association or Heart Association). You might plant a tree, dedicate a bench in the park, volunteer at a cause they cared about (maybe they loved animals and you could volunteer at the humane society!).

These are just a few things that I hope will get you thinking - and give you hope! There IS life after caregiving, and you WILL be ok. You'll also want to rest and allow yourself to grieve - both the loss of your loved ones and the loss of your role as caregiving. I've found it helpful to plan things with people who I know build me up and nurture me as I go through this new phase of life. 

 

I did write a whole chapter in the book I wrote for AARP, Juggling Life, Work and Caregiving, about life after caregiving if you are interested in that! 

 

My best wishes to you and know that we are here to support you even when caregiving ends! 

 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

 


@PattiD438867 wrote:

I’m the sole caregiver for my mother who is on Hospice and has terminal metastatic brain cancer. It’s really no problem. I’m an only child. She trys to be as self sufficient as possible. I’m grateful that I’m here. We do live together, so that’s a plus. My daughter and son in law are devoted and close by, so I’m blessed. My husband passed away this past February and I was his caregiver, too, for as long as I could. He had dementia. He was a sweet heart until his last breath. I am so lucky. I feel bad for those whose families won’t help them. Those not sharing the load are losing out. But what do I do when I have no one to give care to? I’ve never been alone. This may sound like a crock to most but it may become an issue for this caregiver. 


 

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Re: How Do You Ask for Help?

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Patti, that doesn't sound like a crock at all. I share 24/7 care with my sister of my mother with vascular dementia. We moved her to memory care this summer and that first week I was devastated by the loss of my focus. I was shocked to find myself deeply depressed without my mother to consume my days. Memory care turned out to be a terrible decision for my mom, so we moved her back home after 5 weeks, but I too have wondered, when this is really all over, when Mom dies, how do I cope then?

 

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I’m the sole caregiver for my mother who is on Hospice and has terminal metastatic brain cancer. It’s really no problem. I’m an only child. She trys to be as self sufficient as possible. I’m grateful that I’m here. We do live together, so that’s a plus. My daughter and son in law are devoted and close by, so I’m blessed. My husband passed away this past February and I was his caregiver, too, for as long as I could. He had dementia. He was a sweet heart until his last breath. I am so lucky. I feel bad for those whose families won’t help them. Those not sharing the load are losing out. But what do I do when I have no one to give care to? I’ve never been alone. This may sound like a crock to most but it may become an issue for this caregiver. 

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Thank you for the nice comment. No I am a psychologist who provides therapy to seniors, caregivers and family members.

Best of luck

Dr. Marcy

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