Being the caretaker

[TinLizzie48]

Hi everyone, I’m new to AARP so please forgive me if this has been asked or inappropriate. I’m a 48 year old member who is a caretaker to a 78 year old dad. He can take care of certain things, but most of the burdens fall on me. Sometimes I’m overwhelmed and I gave up my job to be here. I thought it was scary when I first moved him in my house when he was healthier but now he’s declining faster and the fear that settled is slowly coming back. Do you have any hints or tips or even support groups that might be if help? Thank you ... Liz

[agoyer · Accepted solution]

@TinLizzie48  It sounds totally "normal" that you are feeling fear and maybe overwhelmed. I don't say that to minimize what you're feeling - the opposite - to validate it. Of course you feel that way - your dad is aging and changing and there is more and more pressure on you. I get it. Dad lived with me for 6 years. He had Alzheimer's. Mom was with us the first year as well before she passed on suddenly. So I understand the pressure. Sometimes we feel like ok, I've got this, I've figure it out and we have a routine and I can handle this. Then something changes - a crisis or a health condition worsens or something completely new comes up. It's intense. 

My dad died about 2 yrs ago and I'm still adjusting to being without him. But I can tell you that, while I did sacrifice things, I wouldn't change it. No regrets. My tip for you is to think every day about what you'll look back on and feel good about. Do more of that. Whether it's taking the time to give him a hug or sit and watch tv with him, or advocating for him with the doctor or cooking his favorite food. Consciously be aware of the incredible things you're doing and give yourself some kudos for them.

I developed a philosophy for survival when I was caring for my parents (and my sister in another state). It came about because one day I was driving and realized my gas tank was on empty. I made it to the gas station but realized after I filled the car up that it actually ran so much better on a FULL tank of gas! It was my aha moment - I was expecting myself to run on empty and be just as efficient ALL the time. I can't expect my car to do that and the reality is neither can I - as much as I would have liked to!

So I started looking at things that "fill me up" - my body, my mind, my soul, my heart. And I consciously thought of my internal "tank" filling up when I did them. I'd literally envision that gas gauge needle moving! It helped me SO much over those years and I still do it. Try looking at it this way:

• Quick tank-fillers - cup of coffee, call a friend,  walk around the block or some jumping jacks, looking at flowers (I kept some in the house whenever possible), petting the dog, a hug etc., escape looking at photos on instagram (you do this - good!), connect with another caregiver (I moderate the Facebook Group Jane told you about - it's an amazing support system you might want to just try it! Everyone there are caregivers going through what you're going through or similar.) and do stay active here in the AARP Online Community! 
• Premium fill-ups - longer things - like watching a movie, reading, attending a support group meeting, taking a class (online or in person), a long walk, dance, out to eat, doctor appts, therapy etc.
• Tune-ups - time away from caregiving
• Routine Maintenance - SLEEP (#1 for me!), eating well, exercise, mindfulness, taking your medications, health care...whatever the things are for you that need to be ongoing (it's different for everyone - except for sleep, nutrition and exercise!). 

We all need some of EACH of these categories - one caregiver told me after I presented this system that she realized she'd only been getting the quick fill-ups and needed to balance with some of the others. Exactly right. This system truly saved me and the key is to do it consciously. It made me allow myself to do things that fill me up without the guilt. It's not selfish, it's practical. 

Hope this system might work for you! Burnout is a very real things, and if you're heading that way you've got to start filling back up. If you're already there, all the more imperative. 

My heart goes out to you - your dad is so lucky to have you! We are here to support you!!!

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving

[JoyS914364]

Excellent feedback!  Thank you for sharing!

[TinLizzie48]

Thank you my dear. ... I will try to remember not to go on empty. Stay healthy. Thank you for the hug. 

[agoyer]

@TinLizzie48  Trying is all you need to do. Perfection is not the goal - being there and doing your best is success as a caregiver. Whatever comes up you will handle it. I always felt like the one thing I can guarantee is that I won’t give up. I’ll get knocked down but I’ll get back up and keep trying. So resilience is my goal. I can’t cure Alzheimers or anticipate every twist or turn in the journey or prevent every fall or solve every symptom. But I can do my best and keep being there. Being there alongside your dad is success as a caregiver. 

so for right no, just show up. You’re doing that! You’ve got this! 

[djvasseur]

AGoyer, thank you so much for your sound advice to Liz, and I'm listening too!  I too am only taking quick fill-ups when more is needed. Thank you so much for your suggestions and advice.  I'm thrilled to have found it!

[agoyer]

@djvasseur So glad you found it helpful!!! Let me know how it's going - how did you fill your tank today?!

[JaneCares]

Hi Liz! Welcome! I was a caretaker to both my parents who are now gone. I live with my partner of 10 years who has MS. And I'm a social worker/counselor who advises patients and families. I have a few ideas. One is to join the facebook group if you're on facebook, (and if you're not, consider joining just for this purpose): https://www.facebook.com/groups/aarpfamilycaregivers. It is a lively community with a lot of conversation about every aspect of caregiving. 

Another is to tighten your relationship, and his, with his primary care provider. Some older people will look and act pretty fine on one day, and like the world is ending and them with it the next, and it might just be a urinary tract infection!  A UTI in an older person has psychological effects that you just don't see in someone under 60 or 70. For example. If he has something that is going to progress, and has no cure, like Parkinson's or Alzheimers Disease, there is a trajectory of illnesses like that for which you can plan ahead, somewhat. Have discussions with him about what he wants and doesn't want. Not easy but so important.

Are you familiar with what the local area agency on aging has to offer? If you go to: https://eldercare.acl.gov/Public/Index.aspx, and type in your zip code, you'll find one or more agencies that has the sole job of making life as easy and dignified as possible for folks over 60. Call them up, be proactive.

As for support groups, there are a bunch of them but not so easy to find. If he has a diagnosis, that association may have some thing. Google "caregiving support" and your town or county, and you might find a church group or a gathering that takes place at an assisted living facility. There's always one to one counseling for you, too. 

Hire an aide even one afternoon a week so that you get a break. Enlarge the caregiving circle. You do not have to do this alone.

Does any of this help or fit? Write more? And God Bless You.

Jane

[TinLizzie48]

Hi Jane, .. surprisingly, I’m ahead of that. I’m just burnt at the edges. I admit it, but I’m not giving up. I’ve tried everything you offered, even working one on one with PCP, nephrologist, urologists, orthopedic, neurologist & cardiologists that because of my issues, for years. There is a diagnosis there that shocked me: early stage Alzheimers. I keep him alert - puzzles, conversations, photographs, stories, favorite movies, card games. 

thank you, Liz

ps - I really got off social media for my mental health & well being. I have Instagram but I have more control and I find more joy there. Again, no even two hours a day and never after 10 pm.  

[JaneCares]

Ah okay. Burnt at the ages is so common, normal, and enervating, too.

Have you ever looked at The Artist's Way? It is a book and has a workbook, too. It spurs thought about creativity, for any of us, all of us, and it might give you some inspiration on what to fill your soul with, what to do with your hands, or your community... start a caregiving support group of your own. Or, like i did as a newbie to this very rural town (i work in one with 2300 souls and live in one with 1/10th as many) -- i started a fiber arts group. Stitch and B*tch. Total fun. I hope you find something to rejuvenate the burnt edges...

[TinLizzie48]

I like the Stiching idea :). Thanks for the warm heart. 

[vw72502174]

The Alzheimer's Organization is a wonderful source for caregivers.  I live in So. Cal. and Alzheimer's OC has a lot of caregivers groups.  Unfortunately with the pandemic, they are all on zoom  My PC is close to the living room where my husband always sits and I have trouble talking freely about caregiving  But the in person groups are wonderful and there are a lot of them.  Verna