New to the community - My Story

[LisaW1964]

I am an new to the community.  I am the caregiver to my mom since May 2010.  My mom have a very bad stroke that left completely disabled, completely bed bounded along with dementia. She requires around the clock care.  I am an only child. I am marriage, 26 years, and have a daughter who was diagnosed with high functioning autism. 

My husband gives great support.  I remember when my mom was hospitalized and when it was time for discharge, her physician as what facility will she be going to.  My husband, without thought, she going home with us not a facility.  This what we are going to need.  I was speechless because I did not know what I was going to do and w I just cried because he did not hesitate for one second. 

What has been so hard for me is my family and the lack of support.  When my mom was in hospital they claimed that would take her before they let me put her in a nursing home, which is something I had not considered.  Most of my family live less than 15 minutes from us and has not come to see her since she was discharged from the hospital in 2010.  My mom was person who would give you her last dime without thinking.  She has done so much for my family and they cannot take time to come by or call.  

I love caring for my mom and her insurance pays fora  provider to be with while I work.  She is with my mom Monday thru Friday, 8am - 7pm.  But I have found that the past year I have become very impatient and sometimes angry with my mom.  Caring for her has limited the amount time with my husband and daughter. We hardly have any family time. On top of everything earlier this year my husband stroke and is recovering.  I was laid off from a company of 19 years and was lucky to fine other employment with a salary cut.  My husband was laid as well and along with his recovery has started to work with a salary cut.  So financially, it is we not great.  There are days that I wish I could run away.  

[JaneCares]

Hi Lisa!  I am glad you wrote as well.

Amy Goyer knows caregiving backwards and forwards, having been through it so deeply herself. I have a couple of thoughts that i hope add to her suggestions.  And a couple of questions.

First, is her insurance Medicaid? The only other insurance i can think of that pays for so much care is Long Term Care Insurance, which in my experience only pays for 3 or 4 hours per day. But if she's already getting services from long term care Medicaid, then I have a rather radical notion: go ahead and place her in a nursing home. Back when i worked with families as a geriatric care manager, i knew many of them who would NEVER place their elderly parent in a nursing home. And then i met one family who'd made a commitment to their mother, and had her in their home, and had aides come all day each weekday. And after many years of this, the daughter who was primarily responsible just had it. She was DONE. She loved her mother. But she hadn't had a vacation, hadn't slept through the night, hadn't had a weekend off, in way too long. So she hired the nonprofit agency i worked for then (Seabury Resources for the Aged, in DC) and asked me to find the best possible place for her. I did, she moved, her daughter was so grateful. The patient was visited daily. The daughter took a vacation and other relatives made daily visits. The family made friends with the staff and she got great care. On Medicaid!! It is possible. 

She was African American and i found a place that had very  high marks and was also mostly African American residents as well as staff. She was in her mid 90s when she passed.

The other thing I was thinking as i read your description of your situation is, ouch, the financial pinch is awful. Your family is probably eligible for some help. Perhaps food stamps, called SNAP, and/or utility assistance. Do you and your husband have Medicare Part D? If so, you may not know that right now is open enrollment: you can make sure your own medications are covered by going to medicare.gov and entering in your medications. The web site then recommends one or more insurance options to supplement your Medicare, and cover more of your meds. It is worth sitting down with a social worker and going over your finances very carefully to look for ways to save. Your mother will eventually pass away, and you, your husband, and your daughter will all have needs. Amy mentions the excellent AARP resources. To get directly to a social worker, type in your zip code into eldercare.gov and find the agency and call. You deserve the help.

Although you express yourself perfectly, I'm guessing you are not from the United States originally. I can imagine that there are many important values from your culture that help you know how to love your entire family, and respect everyone involved. If you are interested, I know the readers of this community would love to know how your culture has helped you to know what to do and how to do it. If you like.

Write us about anything, let us know if our ideas are helpful, tell us about your day: whatever you like. So glad you are among us!
Jane

[agoyer]

@LisaW1964 Oh Lisa! You certainly have your hands full. It's no wonder you are feeling worn out! You have so much stress - in terms of caregiving, finances (and caregiving pushes your finances in addition to work changes), caring for your daughter and your husband had a stroke too. And then you've had work changes too. These are some of the most stressful life events anyone experiences. This video about The Emotions of Caregiving can be helpful to understand what is happening. 

There are some red flags that tell you that you are depleted and exhausted (mentally, emotionally, physically...) and maybe in "burnout". Feeling angry and impatient with your mother is one of them. When you start to feel like you are not yourself it's a sign that something needs to change and you need to care for yourself too. I've been a caregiver my entire adult life for grandparents, parents, sister and others...so I've learned a lot about this! The analogy that works for me is my car. My car can't run on empty and neither can I. So I have to fill my tank and care for myself just as I care for my car - or it just won't run anymore. It's practical, not selfish to care for yourself. 

Only you know best what fills you up, nurtures your soul, gives you energy and peace. But you are crazy busy - so most of the time you need "quick tank-fillers" - like a good cup of coffee, a short walk, talking to a friend, coming here to the online community, looking at holiday decorations, hugging your loved ones etc. But in addition to that you need "premium fill-ups" - a couple of hours when you watch a movie (maybe with your loved ones), take a class, go shopping, exercise, dinner with a friend etc. You also need "tune-ups" - time away from caregiving for a few days or better yet a week or two. Time when you are not caring for ANYONE (I'll share some ideas about that in a minute). And last but not least - "routine maintenance" - SLEEP is #1 priority! And eating healthy food, exercising, getting your medical check-ups, and ongoing things - a hot bath once a week or whatever helps you. It has to be a BALANCE of all of these things - you cannot live on quick tank-fillers alone! 🙂 So even if you start to be more aware of what fills your tank and helps you keep going, you'll automatically make more of an effort and consciusly think about filling your own tank.

OK, so you still have a challenge in terms of all you do is work, care for your mom and try to squeeze in time with your husband and daughter. There is no shame in asking for help. Unfortunately you can't expect others to volunteer to help - you need to seek help and choose to accept it in order to survive. Your family not helping is a big challenge. I can imagine how it makes you feel when you are doing so much. A few suggestions (and I apologize if you have already tried some of these things!

• Many people need to be asked to do specific things - they don't know what to do. So you might ask, Please come Saturday and stay with mom from 2-6pm? Please bring a meal over once a month? Can you please call Mom one day a week? etc. If they all take turns then the time is spread out more.
• I found that it was sometimes easier to get help for me rather than direct care for my loved ones. You could explain that you are getting burned out, you do not want to place your mom in a nursing facility, but it would help you a lot if you had some support from them. They could clean, do yardwork, shopping, make meals, do laundry, run errands etc. to free you up for the direct care.
• You can try family mediation - an objective third party may be able to help you all work out a better balance on your care team. A faith-community leader, trained therapist, or a trained family or eldercare mediator.
• You may need to be more forceful and clear with your family - you've been doing this a long time and you don't want to become so burned out that you can't care for your mom. If you become ill then the whole thing falls apart. It's time for them to pitch in. It doesn't mean you want to walk away - it's just that the current distribution of care needs to be re-balanced.
• Have you looked into respite care? It's amazing that you have help from your mom's insurance M-F, but occassionally you need some time on the weekends too - becuase that's when you aren't working and can do other things.
  • Will the insurance pay for additional help on a weekend now and then?
  • You can contact your area agency on aging and ask about respite care programs in your area. Visit AARP's Community Resource Finder and click on "Community Resources", think check off 'area agency on aging". Call and explain your situation and ask about any respite care programs in your area - either free, or sliding fee scale. Sometimes there are even local volunteers who work with respite programs. You might also ask at your faith community if anyone would be willing to help.  
  • Some respite programs (and hospice) have respite facilities, or will pay for your mom to be in a facility just for one week to give you a break or enable you to take a vacation (or a staycation!) You might ask her insurance about that.
  • Here is a video about How to Find Respite Care 

As we head into the holiday season, be aware that there extra added stress for you! Here is my column with 10 Tips for Caregivers During the Holidays!

There is a lot more info and ideas on the AARP Family Caregiving site too! 

Best wishes to you and please keep us posted and 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