How Do You Ask for Help?

[Jen]

Do you have family that is less enthusastic to help you with your caregiving needs? Has it been difficult to ask for help? What has happened when you tried? If you are discouraged, here are some tips on how to get the help you deserve. READ HERE. 

What's missing from this list? 

[OldMarriedMan]

Dad, 89 years old with cancer got married a few years ago. This is his third wife. She has a progressive case of dementia. They are both on hospice. He initially said that he would take care of her but now he needs help too. She fell out of the bed last night. Thank god my sister-in-law was able to help my step mom back in bed.

My younger sister used to live with them and take care of them 24/7, but she got burnt out. Plus, she couldn't get along with my sister-in-law. She quit as primary caregiver and everything fell in my lap.

The state approved 42 hours of care giving a week. That helps a lot, but the agency for my zip code, 60619, south side of Chicago, can’t find people. When they don’t show up, I have to drive 37 miles (45 minutes) to pick up the duties. 3 days are covered. 4 days are uncovered. My other sister and brother stepped up to help out on the uncovered days.

There are five of us and everybody keeps looking toward someone else to pick up the slack. I have two questions.

1. How do you get siblings enthusiastic about pitching in? Right now it is like pulling teeth.
2. What can I do to get consistent home care agency? We switched from Gareda to Abcor. Abcor is better but not good enough. When the regular person can’t come, they can’t find a fill in. Does anybody know of any top notch service providers for the south side of Chicago?

[GailL1]

@OldMarriedMan 

You said they were both on Hospice and based on what you have said about them in general, I will assume that they are on Medicare.  I wanted to give you the Medicare link so that you can read about what Hospice is, what the Hospice provider should do.  You have a choice of these providers under Medicare.  I am also giving you the link to the Medicare.gov Hospice providers; you can look them up by area.  Notice that the ownership type is listed - for-profit, government, nonprofit.  You can also do a comparison of the ones that you pick for comparison - (3) at a time.

Medicare.gov - How Hospice Works 

Medicare.gov - MEDICARE - HOSPICE BENEFIT BOOKLET 

Finding a Hospice provider nearby:

Medicare.gov - Find and Compare Health Care Providers 

It should not matter if they are set up for Medicare and Medicaid (dual eligible)  Hospice care is Hospice Care - doesn't sound like this is what they are getting currently.  Of course, even hospice care isn't full time care unless they are in a hospice facility.  The family still has to be there but you should evaluate the Hospice care they are getting if they are on Medicare.  Are they on Medicare?

[OldMarriedMan]

We asked hospice for help and they said they don't provide home care services. We use Seasons Hospice in Chicago, IL. The CNA comes twice a week. We asked for three days a week to help with personal care of my step mom, a cantankerous dementia patient. They refused. 🙁

[GailL1]

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@OldMarriedMan wrote:

We asked hospice for help and they said they don't provide home care services. We use Seasons Hospice in Chicago, IL. The CNA comes twice a week. We asked for three days a week to help with personal care of my step mom, a cantankerous dementia patient. They refused. 🙁

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If they are both on Medicare, again I am assuming, and are both under Hospice care - make sure they are getting the care that is covered under that program.  

Medicare.gov - Hospice Care Coverage 

Read over it - especially the Things To Know part 

You can always check with other Hospice providers, like the Medicare site recommends, interview each of them and they will let you know what they can provide based on the hospice plan that they come up with for each one. 

Medicare.gov - Suggested Questions to Ask When Choosing A Hospice 

Hospice care is like any other health provider service - it has to be medically-necessary, there are good-better-best especially for specific conditions, it all starts with what is recommended by the medical doctor; in this case, it is probably the hospice doctor.

Hospice, most especially of the home type, is based on a good relationship between the hospice care givers (all of them as directed by the hospice doctor) - the actual Hospice plan of care - and the family or other staff that could be brought in by the family for help, for providing care in the home.  Hospice care is not 24/7 in the home; the family or other paid staff, picks up where hospice leaves off in personal care or home services.  

Sometimes, caregiving in the home, especially if the family, cannot provide their part - personal care / home services, then an outside the home, more continuous care, facility has to be considered.  Medicare does not pay for assisted living or nursing home care but hospice care can be given in such living environments just like in the home.

Medicare.gov - Certified 4-Levels of Care 

If the dementia patient needs cannot be handled in the home under hospice care -  then other care arrangements have to be made.  Only your personal situation can make that decision.  

[agoyer]

@OldMarriedMan My Dad had hospice and lived at home with me. We had an aide that came 3 days a week and helped get him out of bed and bathed and dressed. The other 4 days I worked with the VA and they sent an aide (at that point it took two of us to do it so either my sister or I or a paid caregiver we paid privately worked with either the hospice aide or the VA aide to get him up and going). I can't figure out why they wouldn't give you the 3 days a week! You can contact Medicare and ask about it - Medicare is paying for the hospice I presume. I can't find anywhere online that says precisely how many days a week hospice can/will send an aide so perhaps it's somewhat based on the need - but clearly you need all the help you can get! 

[GailL1]

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@agoyer wrote:

 I can't find anywhere online that says precisely how many days a week hospice can/will send an aide so perhaps it's somewhat based on the need - but clearly you need all the help you can get! 

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It all goes by the plan that the hospice team, as directed by the doc, puts in place and it can change as health conditions change.  Dementia is a hard one to handle - for family and hospice.  

[agoyer]

@OldMarriedMan I'm so sorry you're going through this! Sounds like a very complicated situation! You do have some positives - you dad and his wife qualified for 42 hrs/wk care - which is fantastic and more than most people have provided. And you have a bigger family and at least potential help from quite a few. So there are some things to feel good about! 

BUT - as you say coordinating those things isn't easy and so many different people, all with different personalities and strengths etc. A few thoughts:

• For the agency - is it provided through Medicaid? Through a special state program? Definitely talk with your case manager and make sure the state agency is aware of the problems you are having getting help. I suspect the pandemic may have something to do with it and hopefully that will get better as people are vaccinated and more willing to go into people's homes. But sometimes, unfortunately, the aides aren't reliable (and probably aren't paid terribly well - hard to know). Don't hesitate to switch agencies again if others are available - the quality of the home care agencies can really vary a great deal, including how much they pay the aides. 
• If your dad and step-mom are on Medicaid, they may qualify for a program where they choose the care providers and they can be family - so family can get paid to provide care. If they qualify, maybe some of the family who help out could get paid and that would be a motivator. And/or you could hire someone directly (see my next bullet below). Check out this article: How to Be Paid When Becoming a Family Caregiver.
• You could hire someone directly for the days that aren't covered by the state. Often, when we hire people directly, a relationship develops and they may be more likely to be reliable. You might also be able to pay them better than an agency pays so they are more dedicated to coming. 
• For your family - it seems like most families do best when a regular schedule is created - Susie does Mondays, Ronnie does Wednesdays etc. So they can plan around that. But, as you point out, there still has to be a person who will be on "backup" duty every day in case the paid workers don't show up. Perhaps you could appoint a back up for each day the paid workers are supposed to come. Have you held a family meeting and made it clear that these are commitments and, barring an emergency, they need to be there on their appointed days? Sounds like you are the leader in the family...
• There are apps for care coordination - you might try using one for your family - some are explained in my column: Apps and Tools to Help Caregivers Stay Organized 
• This free planning guide from AARP might be helpful to you as you look at building your team and getting professional help - it includes 5 key issues for caregiving: Prepare to Care Guide 
• In terms of service providers - AARP does have a Community Resource Finder tool you can put your zip code in and check out the list of service providers that come up under the "Care at Home" section. However the agencies listed are not vetted in terms of quality - but it's at least a list to start with and you could then do a search online for any ratings.
• If the agency is Medicare and/or Medicaid certified they will have their ratings online in the Care Compare site run by Medicare/Medicaid. In that search tool, if you leave the "Agency Name" field empty and just put in your zip code and choose "Home Health Services" from the dropdown list, you'll get a list of all the agencies in your area. You'll be able to see their quality rating and their patient survey rating (if there is one). 

I hope these resources and thoughts are helpful! You are doing a challenging but very important thing trying to coordinate your dad and his wife's care. It's stressful. Be sure to take care of yourself too! You can also join our Facebook AARP Family Caregivers Discussion Group to get more input from other caregivers as well! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving

[KarinH142099]

My husband’s 86 year old mother and 64 year old sister live in same place, the home we were raised in.  I am the caregiver for both.  

Mother has aged memory problems, very confused, forgetful, and other health problems.  She just told me of a huge lump underneath her breast that she says has been there for a while.  Took her to her doctor and doctor has ordered a mammogram, and said will probably get a biopsy done.  

Sister has advanced dementia, which is progressing each day.  She doesn’t know him, myself,  nor who their mother is, and have caught her eating cat food a couple of times.  She needs 24 hour care, and I’m only 1 person.  My daughter (which is step daughter), helps when she can, but she has a full time job too...

Sister has 2 children who will not even help, they won’t even come.  He has another sister, whose always making excuses why she can’t come to help.  She’s even said she’ll help pay for care, but after the care help had been done, I had to pay the bill myself, and she will not pay me back or even part of it.  Which she’s always making promises, and when we do it, she doesn’t keep up her end.  Glad I only done a few nights.

There is no insurance, only home in which that sister talked our mother into doing a reverse mortgage back around 10 years ago.  She didn’t want the sister with dementia to get the home if something happened to our mother.  So, here husband is, with this all on his shoulders alone.

Is there anything out there for them?

[CameronL688930]

Check with your local area agency on aging. It might be able to point you to resources, perhaps even low-cost sources of help such as adult daycare. Also, if your mother-in-law and sister-in-law have very limited income and assets, they might qualify for Medicaid, which can help cover the cost of in-home care or skilled nursing care (typically doesn't cover the cost of care in an assisted living facility).

[JaneCares]

@KarinH142099 

My husband’s 86 year old mother and 64 year old sister live in same place, the home we were raised in.  I am the caregiver for both.  

So you and your sister were raised in the house you live in with your husband and his mother, right? Does your husband do any caregiving of his mother?

Mother has aged memory problems, very confused, forgetful, and other health problems.  She just told me of a huge lump underneath her breast that she says has been there for a while.  Took her to her doctor and doctor has ordered a mammogram, and said will probably get a biopsy done.  

You and your husband could talk with the primary care physican after the results of the biopsy, and IF there is cancer, you all could seriously consider just leaving it alone. Cancer in an 86 year old grows very very slowly and she is more likely to die of something else than cancer even if you left it alone.

Sister has advanced dementia, which is progressing each day.  She doesn’t know him, myself,  nor who their mother is, and have caught her eating cat food a couple of times.  She needs 24 hour care, and I’m only 1 person.  My daughter (which is step daughter), helps when she can, but she has a full time job too...

She is young for such advanced dementia. I’m glad your daughter helps. Do you have a schedule so you know when you get a break?

Sister has 2 children who will not even help, they won’t even come.  He has another sister, whose always making excuses why she can’t come to help.  She’s even said she’ll help pay for care, but after the care help had been done, I had to pay the bill myself, and she will not pay me back or even part of it.  Which she’s always making promises, and when we do it, she doesn’t keep up her end.  Glad I only done a few nights.

What is up with her 2 children? “Help” could be as simple as coming over for an afternoon on a weekend to give you a break, or to bring a casserole or a pizza upon an evening. Does your sister have an ex-husband who could talk to them about helping, coming over? I’ve often thought that a radical thing to do, but necessary in some families, to pack up a day’s worth of whatever your sister would need, and drive her to one of her kids’ homes, and say, I need a break! She loves to watch old westerns! I’ll be back at 7pm (or better yet, tomorrow)!

There is no insurance, only home in which that sister talked our mother into doing a reverse mortgage back around 10 years ago.  She didn’t want the sister with dementia to get the home if something happened to our mother.  So, here husband is, with this all on his shoulders alone.

Help us understand, so you live in a home that is owned by you and your sister’s mother? Where is the mother? So you all get an income each month from the reverse mortgage: is that enough to pay for any paid help to give you a break?

And your husband helps with caregiving?

Is there anything out there for them?

There is all kinds of help: free help if your household is low enough in income, subsidized help from the state if the income is slightly above the state Medicaid income limit, and paid help above that.

I probably have a lot wrong in my understanding, but if you want to be more specific, then I can suggest some other options, and so can our other group members. All of us have caregiving experience!

Your family is lucky to have you. Bless you.

Jane

[PattiD438867]

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. 

[agoyer]

@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 🙂 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

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@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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[LicketyG499198]

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?

[JaneCares]

One idea i used when i had trouble asking directly is to ask someone else to ask. If i recruit a friend of mine to call and ask for me, then the friend is able to hear the response of the called and absorb the truth -- that they really didn't mean it when they said call if you need anything. The called person feels less guilty and the caller doesn't get her feelings hurt. Spares you the awkwardness!

Of course sometimes people will agree to help!

I'm all about avoiding awkward situations if i can.

Jane

[DrMarcy]

It is very difficult to ask for help especially when you have always been an independent person. The list provided by AARP is very extensive. Try to follow the recommendations provided. It is also helpful to practice asking for help. This may sound silly but it can actually help. You can also use different ways to seek outside help from others. You can do it verbally or in writing via a note, email or text explaining yourr new life circumstances. Asking for help is a challenging and often overwhelming process. Also try to say to yourself, "What is the worst thing that can happen"" You may answer that you will feel anxious and/or the individual may say "no" . Also consider seeing outside services for help and resources.

best of luck in your caretaking journey

Dr.Marcy

[d696534z]

Hi my name is Diana Zamora I am my mom caretaker I have a brother and two sisters who don't come and help out it's hard taking care of my mom

[JaneCares]

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@d696534z wrote:

Hi my name is Diana Zamora I am my mom caretaker I have a brother and two sisters who don't come and help out it's hard taking care of my mom

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Hi Diana. Have you tried asking for a family meeting, or using a time you all get together anyway to ask how your brother and sisters are going to pitch in?  How about packing her up for a day outing and delivering her to your sister's house for a Saturday? That might surprise them into making a way to help... to share the hard stuff.

tell us more?

jane

[m907706g]

I have no brothers or sisters so I basically had to do it on my own.  May I just throw this in.  I got zero help from the catholic church.

[JaneCares]

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@m907706g wrote:

I have no brothers or sisters so I basically had to do it on my own.  May I just throw this in.  I got zero help from the catholic church.

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what kind of help are you looking for? my parish was able to organize casseroles and transportation for a 41 year old woman who had a stroke. it would be the community, not the priests and nuns, i'd hope for help from.

have you checked out what's free? type in your zip code into eldercare.gov and go meet with the agency. being a good caregiving child does not mean being a martyr. 

what have you figured out for yourself in your role as caregiver? i know i'm learning all the time from other caregivers...

jane

[DrMarcy]

Asking for help from others is one of the most difficult tasks for a caregiver. Most caregivers often feel that he or she must do everything on their own. It is important to ask for help while realizing that the answer may be "no" or you may not receive the exact type of help that you are seeking. You also must accept that help will never be provide in the same way that you "provide help." But all caregivers need some type of help. There are all types of help. You may ask for a friend to watch your loved one while you do chores in our outside of your home or simply take a walk, you can let your church, synagogue or neighbors know that you need assistance and let them prepare a few meals. Never assume that others know that you need help even thought that would be nice. Caretakers need to find ways to care for themselves. 

-Attend a Caregivers group

-Exercise

-Talk to a friend

-Read a book

Most important of all let others help you

Advice from Dr. Marcy 

[AARPTeri]

@DrMarcy  Great post and information you shared.  Welcome aboard!  Are you a caregiver?

[DrMarcy]

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

[ld6653]

 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. 

[agoyer]

@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

[MaryA862513]

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

[JaneCares]

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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

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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

[agoyer]

@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

[JaneCares]

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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. 

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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