Monday, March 5, 2018

Teatime Conversations: Ideas and Resources for Chronically Ill Mother and Daughter

Reader Question: I'm a solo mother with a chronic illness. I can't work in paid employment, but am still able to help my 14 year old daughter homeschool. She has been getting sick, tired, suffering from chronic pain, and we are in the process of getting a diagnosis. I want to be able to lighten her burden and have more fun with her as she is very mature for her age, but has had to shoulder a huge burden over these years. I've been trying to think of things I can do with the limited energy we have that would be fun, lighten her load and mood, or just make things easier for her. I've been working slowly on decluttering and setting up systems to use less energy, watching movies together, helping her sew upcycled clothes and so on, and listen to her as much as I can. If you could offer any ideas, resources, and so on, I'd be grateful :) Thank you.

My heart goes out to you, friend. It sounds like both you and your daughter are facing a lot of challenges. Living with a chronic illness is hard enough, and being a single parent on top of that must be even more physically challenging. You and your daughter have been in my prayers today.

That is wonderful that you are able to homeschool your daughter. What a good gift to give to her. With her chronic illness, it is probably especially helpful for her to be at home for school. I can tell that you love your daughter very much and that you are doing all you can to serve her and take good care of her. You are a loving and courageous mom.

I have been brainstorming lately to think of fun things you can do with your daughter and practical things that might make life easier. I’ve also been thinking about other organizations that might have resources, help, or practical tips for you. I hope some of my readers will chime in with their ideas too!

Fun things to do together:
  • Start a simple book club. This could be just the two of you reading and discussing a book together. Or if you are up for it, you could invite another mother and daughter to join you in reading a book and then coming over to your home to discuss it.
  • Do a Bible study together. Like a book club, this could be something for just you and your daughter, or you could invite another mother and daughter to join you for a regular Bible study.
  • Watch a True Woman conference. I have always enjoyed these conferences and the ability to watch from home. This year’s True Woman conference will be September 27-29, and they always offer an online live-stream for free. You and your daughter could attend a conference together from the comfort of your home! Revive Our Hearts also makes all of their main speaker sessions available for free online, so you can watch sessions from past year’s conferences too.
  • Attend a Joni and Friends family retreat. I don’t know if this would be too exhausting for you and your daughter. I have never been to a Joni and Friends family retreat, but I have heard so many good things about them. Maybe there would be a family retreat close enough that you could attend. There is a cost for the week, but Joni and Friends also offers scholarships, and that might help to make it affordable. 
  • Start a blog. If you and your daughter enjoy writing, you could start a blog together. The two of you would have a unique perspective to offer as a mother and daughter who are facing chronic illness together. Or you could write a blog that has nothing to do with chronic illness. Maybe you could share about the upcycled clothing items you are making. You could take pictures and make tutorials for those who want to learn how to alter clothing and make something new.
  • Try new crafts together. YouTube has lots of tutorial videos for crafts. Maybe there is a new craft you and your daughter would enjoy together – perhaps knitting, crocheting, painting, quilting, or card making.
  • Try out a new board game or card game. Cribbage is one of my favorite games. Pente is another fun game for two people. Maybe there are new-to-you games that you and your daughter would enjoy.
  • Participate in a service project. Is there something you and your daughter could do from home to serve others? It could be praying for the needs in your church, praying for a ministry you want to support, sending cards to others in your church or community who need encouragement, making baby hats to donate to your local hospital, or making a blanket for an elderly or chronically ill person in your church.
  • Watch television or movies together. You did mention this in your message to me, but I think it is worth repeating. There are many days with chronic illness when brain fog and fatigue make it impossible to read, do a craft, or do anything that requires much thinking. Sometimes watching tv is a wise use a of time. And if that is what you need to do with your daughter, then enjoy your time together watching tv!

Tools for making life easier:

I don’t know exactly what your needs and your daughter’s needs are, but here are some tools that have been helpful for me. Maybe they would be for the two of you as well.
  • A lap desk. Having a lap desk has made it much easier for me to use my laptop computer while in bed or in my recliner.
  • A recliner. I do many things from my recliner – read, eat, scrapbook, work on taxes, talk, rest, and look outside. On the “bad days”, a recliner can enable me to be out in the living room with my family for a short time when I might otherwise have to be in bed.
  • A Kindle. There are days when my arms are too tired to hold open a book, but I am able to still read if I have my kindle. I can prop up the kindle, and then all I have to do to turn the page is a simple tap on the screen. 
  • Shower stool. A shower stool makes showers less exhausting. If fainting is a risk, it can also help to lessen that risk. 
  • Mobility aids. A seat cane, wheelchair, and/or walker can make getting around the house easier. I have all three of these, and I use them at different times in the day depending on what my needs and energy levels are in the moment.

Resources for further help:
  • Joni and Friends response department. Joni and Friends does an excellent job in encouraging and supporting those affected by disability. You can contact Joni and Friends to ask for prayer, encouragement, information, resources, and more. They always send a kind, helpful, and gracious reply.
  • Online chronic illness community. There are ideas and support to be found through the chronic illness community online. This can be through blogs, Facebook groups, and websites and online forums for specific illnesses. If you are interested, you can find some of my favorite blogs, books, websites, and forums on the Resources page.
  • Your local church. I don't know if you have a good local church or not. If you do, it would be helpful to let your elders and deacons know of the struggles you and your daughter are facing. The church may be able to offer some practical help or sponsor you to attend a Joni and Friends family retreat. If you aren't part of a local church, I recommend looking for a good church near you. 9Marks has a helpful online church searching tool. 
  • Local Joni and Friends office. Your regional Joni and Friends office may be able to share about local help and resources. They may also be able to help connect you with a local church that has programs available for people with a chronic illness or disability.
  • Independent Living Center. Your local Independent Living Center may have ideas for resources in your area. Sometimes they also have durable medical equipment they can loan to you if you need it.

Cranberry Tea Time friends - we would love to hear from you! What ideas do you have for fun things this mom and daughter can do together? What things might make life easier for them? What resources have you found helpful??

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