23 years of suffering

[SandiA865116]

23 years ago my father suffered a massive brain aneurism.  The doctor's gave him a year to live.  Well, it's been 23 years now.  My mom was his primary caregiver for 20 or the 23 years until she fell and broke her hip.  Although I helped throughout the first 20 years, I now am the sole caregiver to both my parents medical, financial, and personal needs.  I am lucky, I know.  They live in an assisted living facility and I have help.  But, I also work full time in a profession that is also to provide support and needs to families and the never ending NEED between work and my parents is taking it's toll.  The hardest part now is the reliazation of constant and unending suffering by both my parents.  My dad is unable to communicate, walk, care for his physical needs, and sits in a chair or bed all day.  My mom's body is decaying to the point that she is in physical pain daily, trapped in never ending saddness.  I'm angry at the universe, God, whatever you want to call it.  I just can't find any joy anymore, yet I feel guilty because I also have much to be grateful for.  I'm tired.

[agoyer]

@SandiA865116 Oh Sandi! I agree with Jane - burnout! And you proabably are well aware of it too (esp since you work in a profession that helps others also). And that's why you posted here - which is a great step! I have been caregiving for various family members at various levels for the past 35 years - the past 12 yrs intensively for my parents. My Mom passed on 4 yrs ago, my sister 3 yrs ago. Daddy is 94 and has Alzheimer's and lives with me. I am in this field professionally and help other caregivers daily. It really is a lot of giving and the way I see it we become empty - we give it all out and don't fill back up and eventually that means crashing. You've noticed you can't feel the joy anymore - that's the big red flag it's time to make some changes - usually small changes as we don't have the time, money etc to make big changes.

I'm sure you do all you can to fill up (I liken it to my car - it can't run on empty and neither can I, so I think of it as filling my own tank). But sometimes I know I get so caught up in the doing, responding, anticipating others' needs, advocating, empathizing...I really do lose track of filling myself back up. Do you do the same? 

Jane had great suggestions - counseling, see your doctor etc. An in-person support group even for a short time might helpy you get through this low period. I'm acutely aware that my mindset is a huge part of how I experience caregiving. It's also the only thing in the situation I can control. Here are some things I do to manage my mindset, I hope you'll see something here that might be helpful to you! I don't mean to assume you aren't doing these things - if you are then all the more reason to seek professional help. Have you tried;

• Quick tank fillers: What brings you MOMENTS of joy? As simple as a cup of coffee at the right moment, call or text a friend, meditate for 5 minutes, breathe, short walk, jumping jacks, buy flowers etc. Think about what gives you an instant lift...
• Premium fill-ups: Going to a movie, dinner or lunch with a friend, exercise class, massage, do something creative, do nothing, do something fun with those you are caring for (not so much a caregiving task but a movie, tv show, meal, game etc.)...
• Tune-ups: More extended time away from caregiving for ANYONE but yourself! I think this has to be at least 3-4 days and preferably at least a week. 
• Routine Maintenance: Making sleep the highest priority - we can't function or cope when we are tired - everything gets magnified emotionally, mentally and physically. I do things like listen to a meditation app while I go to sleep every might, use an aromatherapy diffuser with lavender, try to get a minimum of 8 hrs of sleep. Eat healthy foods, go to the doctor, exercise regularly - you know what these are. I consider taking a hot bath and getting a massage routine maintenance for me because I have fibromyalgia. I also consider feeling joy a basic and has to be daily. What are the basics for you? 

Here are a few resources that I hope might be helpful to you!

• AARP has a caregiving webinar series - here are a couple that I think might be helpful to you:
  • Click HERE to watch this short video is a talk I gave about Consciously Experiencing Joy while caregiving 
  • Click HERE to see this short video about Accepting Help and Taking a Break 
• I made these videos about Creating joy while caregiving and Noticing the inherent little joys while caregiving (the latter being just as important as the former!) These show real life examples with my parents! The ways I do this now are somewhat different as Dad's Alzheimer's progresses - the moments of joy are more subtle - Dad smiles, he says something (the other day I asked if he had a good nap and he opened his eyes and grinned and said "N-A-P" (twice!) That filled me up for days! A hug, pat on the back, he eats something and I can tell he likes it, I do something to make him more comfortable and happy and I can see it makes a difference even for a moment - those things are what keep me going now. 

How else can we help? I'd love to help you with any more specific questions - and feel free to say these suggestions don't help what I really need is...! That's ok too! 

Bottom line: You can do this. It's ok to be mad at God or the Universe or whatever (often I think this whole plan of life stinks and I could make some good suggestions if God would listen! 🙂 Keep filling your tank. Acknowledge what you can control and what you can't control. Just keep getting back up and being there beside your parents when you get knocked down and that is the greatest gift of all. Just do your best. WATCH THIS very short video with advice from my Dad -  He started talking a couple years ago and clearly had a message to give. So I grabbed my phone and videotaped it...his advice and inspiration...it's right on for us as caregivers! It keeps me going - hope it will give you a smile and help you know you can do this!

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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@SandiA865116wrote:

23 years ago my father suffered a massive brain aneurism.  The doctor's gave him a year to live.  Well, it's been 23 years now.  My mom was his primary caregiver for 20 or the 23 years until she fell and broke her hip.  Although I helped throughout the first 20 years, I now am the sole caregiver to both my parents medical, financial, and personal needs.  I am lucky, I know.  They live in an assisted living facility and I have help.  But, I also work full time in a profession that is also to provide support and needs to families and the never ending NEED between work and my parents is taking it's toll.  The hardest part now is the reliazation of constant and unending suffering by both my parents.  My dad is unable to communicate, walk, care for his physical needs, and sits in a chair or bed all day.  My mom's body is decaying to the point that she is in physical pain daily, trapped in never ending saddness.  I'm angry at the universe, God, whatever you want to call it.  I just can't find any joy anymore, yet I feel guilty because I also have much to be grateful for.  I'm tired.

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Hi Sandi,

You sound burnt out. 

Do you have any siblings who could help out? Or do either of your parents have siblings who have children who are close to their aunt/uncle, who could help visit, monitor, whatever?

I imagine that you've tried to address your mother's pain with the medical staff? I know everyone is crazy to the point of paranoia about opioids, but, there are lots of things to try and really no excuse for her remaining in pain. None.

You sound like you have a demanding job in the helping professions. Me, too. Sounds like your burned out from that too. Been there.

What do you do for self care? step it up?

Do you have a therapist? you might be depressed. Give yourself the PHQ9 (google it) and see. Even if you are not depressed, someone to dump on for 50 minutes once a week or every other might be just the ticket to help you feel literally heard and appreciated for all you've done for your parents. they've loved you and you love them. Now what? time to get some advice.

What do YOU think would help you?

SO GLAD you wrote! Please write more. Tell us more. I can so relate.

Jane