TOPIC TUESDAY: Help for First-Time Caregivers!

[Jen]

Here's a question for this week! When you started your caregiving journey, who did you turn to? Where did you go for information? Friends? The Internet? Your doctor? Tell us why you chose to turn to the person/organization you did. 

[agoyer]

This is such a great question! The first place I turned to way back in 1983 was the local area agency on aging where my grandparents lived. They were able to help us obtain services and supports for my grandparents (I lived in another state). That is still the first place I suggest people go when they begin caregiving! 

[Melomaniac]

Hi,

 My name is Joe and I started my journey as a caregiver for my wife 4 years ago this month with her diagnosis of pancreatic cancer. Until now, I haven't turned to anyone. My wife and I are very close and we share our feelings, concerns and fears pretty openly. Since our exit from a clinical trial due to her progressing and waiting to begin another clinical trial, I've felt for the first time that I'm not able to give her the support that she needs. (and that's not because I'm not trying) But I also feel like I need to talk with someone for support as well. Long story short, this is my first outreach, but I'm also looking for caregiver support groups near me. Thanks for this post. Great question. 

[AmandaSingleton]

Hi Joe:  Thank you so much for your posts and for reaching out here.  What a long four years this must have been, but how comforting that your wife and you can turn to each other and express yourselves openly. 

Dovetailing off of Amy's post, a pancreatic cancer-specific support group (such as through CancerCare) can be invaluable.  My father-in-law had pancreatic cancer, and I learned so much by hearing others' experiences in online forums. Also, as you look in your community for local options, it may be worth a phone call to your area Hospice.  Generally, we think of Hospice as providing end-of-life services, but many Hospices provide so, so much more and generally with little to no charge.  Our area Hospices run excellent support services, including one-on-one counseling if group discussions aren't your preference.  And, of course, check in with the folks on this forum.   There's much compassion and collective experience here. 

I am wishing your wife and you all the best and a successful treatment through the next clinical trial.  Please keep us posted. 

[agoyer]

@Melomaniac Hi Joe - so glad you are reaching out. I'm sure you've had so many ups and downs caring for your wife - it can be hard on you both. Sometimes the caregiver needs support too. 

You might check out AARP's new Community Resource Finder - you'll find community services (including the local area agency on aging), information about caring at home, housing, medical services, AARP events and more. 

Have you connected with the CancerCare.org Pancreatic Cancer Caregiver Support Group?

AARP also has a Cancer Care Guide that might be helpful to you. 

I'm sure you know this, but as a caregiver, you are vulnerable too. As caregivers we give and give and give. But your car can't run on empty and neither can you! It's not selfish, it's just practical to care for yourself too. You know better than anyone else what fills your tank - sleep, eating well, exercise, sports, movies, a good cup of coffee -- make time for these but also try to find time for at least a few days when you aren't caring for anyone. I've been caring for multiple family members for 35+ years and I know how difficult it can be to carve out time for ourselves - and often in a crisis we just have to put that aside. But I've also learned that I will crash if I don't keep filling my tank a bit at a time. 

You'll find many resources at AARP's Family Caregiving Site aarp.org/caregiving.

Let us know if you have any specific questions or just need to vent - we are here to 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

[Melomaniac]

Thanks @agoyer for the kind, true and resourceful words/information. I'm working on stealing some time to recharge, but it still feels selfish. It's comforting just knowing that you aren't alone and everything that I have or am currently feeling, someone else has also felt. I haven't look into the resources you mentioned, but I'm planning to. Thanks again and thanks to all those who posted previously. I think I read through them all and found them both helpful and encouraging.

Joe

[agoyer]

@Melomaniac It may always feel a little bit selfish, or that she needs you to be with her more than you need to recharge - that may be your first emotion or thought, but I hope your head will override that sometimes! We all know we need to recharge, it's just doing it that's hard! 

I spoke at an event last week and a caregiver talked to me afterwards and told me that after hearing my car analogy it had finally clicked for her. She had been doing the quick tank fillers (cup of coffee, text with a friend, walk around the block, music etc.), and occasional premium fill-ups (a movie, dinner with a friend etc.), and she thought she was taking care of herself. But she hadn't been so good aout doing the routine maintenance (sleep, doc appts, healthy food, exercise) and she had not been getting any tune-ups (a few days away from caregiving). She said those quick things hadn't been lasting, and now she knew why. You have to have a balance of all of these things! 

Your wife is very lucky to have you! 

Take care,

Amy Goyer

AARP Family & Caregiving Expert

[Melomaniac]

Ty Amy @agoyer,

 Thank you. So much good information and so much to think about when you are worried about seeming or sounding selfish. 

Is there a recording of the event you spoke at? It really sounds interesting. Thanks again. This site is such an important resource. 

Joe 

[agoyer]

@Melomaniac Here's another tip - I found that I felt better about taking time for myself if I arranged for something special for my parents. A special visitor, a new movie to watch, someone else taking them out to eat etc. You might arrange something fun your wife enjoys - visit from a friend or relative, spa day, movie - whatever she likes! 

My speech last week wasn't videotaped, but you can look on my youtube channel there are other speeches and media appearances there as well as my AARP videos with tips and other caregiving videos! It's www.youtube.com/amygoyer - check my playlists. 

Here's one of my AARP columns that might be of help Ways to Balance Life as a Caregiver  and there are so may fantastic resources in our Caregiving Work Life Balance section of the AARP Family Caregiving Site. 

Take care,

Amy Goyer, AARP's Family & Caregiving Expert