Sunday, February 24, 2019

Lessons from Caregiving, #17: Figure Out What You Really Need

(This post is part of a series. For previous posts in the series please see #1#2., #3#4#5#6#7#8#9#10#11#12#13#14#15, #16)

"Other than prayer, what do you need from your friends for YOU?"

The question from my grief counselor stopped me in my tracks. I could answer what I need for my husband, for my parents, even for my dog. I'm more than happy to tell you how you can come alongside me and help me provide care. But me? As I walk out this dementia caregiver journey, what do I really need? I realized the question boiled down to this: How can I receive effective care to enable me to give the best care?

My counselor is also a Christian, so I knew she wasn't pooh-poohing prayer as unimportant. As she explained, it's only going to get harder from here, so I need to get good at identifying and asking directly, not passively, for what I really need.

My first thought: "I have absolutely no idea." My second thought was an over-spiritualizing one: "I'll just let God whisper to people what to do."

But then, the words of Paul in 2 Timothy 4 came to me. "Make every effort to come to me soon ... Get Mark and bring him with you, because he is a great help to me in ministry...When you come, bring with you the cloak I left in Troas with Carpas and the scrolls, especially the parchments." 

We know from Paul's letters how much he depended on prayer. Ever since my blog series on Paul's prayers, I have been deeply challenged to be bold and specific when asking for prayer! In this case, though, Paul didn't give specific prayer requests - he asked specifically for what he needed from those closest to him. Paul could have given us the example of praying and trusting God to whisper these needs into Timothy's heart - He certainly can do that, and I don't want to minimize the importance of trusting Him in that way. But in this situation, God chose to inspire Paul to make specific non-prayer requests. 

As I've processed this question in light of Paul's example, I've started taking to the Lord the question - "What is it that I need?" As part of this process of learning how to articulate my own need for care, I wrote down what I'm sensing for now and sent it to a small number of people. I'm sharing these knowing many who read this blog do not even know me - but you may know someone who is serving as a caregiver, and I'm hopeful that this will give you some ideas to serve them. Please just realize that everyone is wired differently, and everyone is at a different stage of caregiving. The most important thing you can do is ASK! 
  • Understand me. More specifically, understand what I'm facing as a caregiver. It's hard to communicate everything that we face on a daily basis. My heart soars when a friend takes the time to read a book or article about the disease or caregiving, and lets me know. (Note: I'm not talking "miracle cure" articles. I mean information about the disease progression and what to expect, or about what caregivers go through.) When you take the time the understand, it means so much. Ask me if you need suggested resources.
  • Help me feel connected. As this disease progresses it grows increasingly isolating. I wonder what I'm missing at events I can't go to. I love it when someone shares prayer requests from Bible study, summarizes the discussion, or even involves me in some of the questions that came up! If I have to miss part of church, I'd love to know what the songs were or what the message was about. For other events I would normally attend, it would be fun to see a group picture - waving at me would put me over the moon! I need to feel part of things in some small way.
  • Reach out to me. It's hard since I am a planner, organizer, and initiator - but in this season, I often don't have the emotional or mental energy to reach out in an attempt to maintain relationships. That doesn't mean you aren't important to me or that I don't want to hear from you. I love texts or Facebook messages that I can reply to when I have the opportunity. Every communication doesn't have to be about dementia or even about me at all. Pictures of your kids or your dogs, or even your weekend hike, silly jokes, encouraging songs, summaries of your day - all are welcome!  I really just need to feel connected. 
  • Listen to me. One of the hardest things about my spouse having this disease is that I have lost the one person that knew all the details of my life. The person who listened to me vent about my workday and knew when to suggest a dinner out to unwind. The person who listened to me without complaint when I "got on a soapbox" as he loved to put it. The person who knew how I liked my food ordered. The person who knew why I loved or hated certain shows. I've realized that one person will never be able to replace a caring, loving spouse, for me or for anyone. But you can be part of helping me by offering a listening ear in specific ways. Ask me about my workday - and ask follow-up questions so I know you really want to feel part of it! Let me know about current events that interest you and I may just get on a soapbox for you too! The opportunities are endless. :) 
  • Share with me. I want to hear about your life, your family, your world. The movie you went to see, the trip you are planning. Those things don't make me feel left out - they remind me that there is life outside of the limited schedule I have in this season. 
  • Love me. My primary love language is words of affirmation and I really miss my hubby's sweet notes. Cards, sweet texts, handwritten notes slipped into my hand - all these scream "I love you" to me! It's hard for me to get in phone calls or have visitors, but letting me know you are available for a scheduled call (or text chat if I can't work out a call), or trying to plan a brief visit, is amazing as quality time is my second love language.
  • Hug me. I find that I am needing physical touch more these days, so good old hugs are always welcome. There is something comforting about laying my head on a dear friend's shoulder! 
  • Help me. Knowing I can call on you (or your hubby) if I need something done around the house is a great relief. 
  • Surprise me. Those who know me best know how surprised I am that this is even on the list! I generally don't like surprises. But in this case, unexpected blessings are precious. Flowers (jonquils are my favorite but I'm not picky!), gift cards especially to drive-through places or those with curbside delivery since we have to take any food home now, food dropped off at our house (it doesn't even have to be a whole meal - a friend recently texted me that she had just dropped off a quart of the soup she made the night before) -- all these and more "surprises" just remind me that I am thought of and cared for in specific ways. It also reminds me that God sees and hears the cry of my heart to not be so alone in this season.
  • And last but certainly not least ... Let me know you are praying for me. Remind me that my prayer requests are not in vain! If God gives you a scripture or specific way to pray, tell me. If you pray at the same time every day or with the same reminder prompt, tell me! I know I only get through each day on the uplifted arms of others' prayers.
If you are a caregiver, then I challenge you as my counselor challenged me: Determine what YOUR care needs are. Reach out, or at least be prepared to answer if someone offers. As Paul taught us, it's ok to ask for what we need. Ultimately, we are trusting the One who knows our every need ... even the ones we haven't figured out yet.