4 posts tagged “family communication”

Parents with lupus (or any health condition) ‘don’t have to be perfect’ — take it from this mom

Posted 9 months ago by

PatientsLikeMe member Jeanette Alston-Watkins (JeanetteA6872) was diagnosed with lupus in 2006, when her kids were 11 and 14. “My kids are my strength and they gave me energy and willpower,” she says in this Q&A about parenting with SLE. (Jeanette is on our 2018 Team of Advisors.)

Can you share a bit about your diagnosis and how it impacted your children?

They were 11 and 14 when I was diagnosed with lupus, but I started getting symptoms three years before, if not earlier. They didn’t understand why their mom was always sick and tired.

To give you a little background on me, I need to always stay busy. When I was diagnosed with lupus in 2006, I had just recently been married (less than a year) and I was working full-time as a sales manager for a manufacturing plant. I was going to school part-time to complete my bachelor’s degree in business. I was a team mom for my son’s football and lacrosse teams, and for my daughter’s soccer and lacrosse teams, and I also assisted with her volleyball team. I really stayed busy. So, when you’re that busy and have all this energy, people notice when your energy level isn’t what it should be. I started hiding from the sun more, resting or sleeping during breaks and getting sick all the time. Something was wrong.

The first year, I was totally alone because I didn’t want to tell my new husband what was going on. How would I even tell him? I didn’t know what to tell him since I didn’t know enough to explain. The only thing I remembered was my friend died from lupus years ago. So, after a year or so, I researched all my options and finally was able to talk to him about it, and then I told the kids.

What’s the toughest aspect of raising kids when you’re living with SLE?

The hardest part of living with lupus and raising kids is having the energy to keep up with them. I realized that I couldn’t keep up with my schedule as it was, let alone their hectic schedules. I had to start including the many doctor visits.

I had to stop being in the sun for so many hours a day. I needed to be protected with SPF, clothing, hats, sunblock, sunglasses and umbrellas. These were things I never paid attention to, but I had to start, and I needed to teach my kids about the importance of it.

I had to start resting when my body demanded rest. I had to figure out what I could cut out of my life and still feel normal. I realized, I had a lot of research to do if I want to live until 100, as planned, and to be able to see my children grow up. (They’re adults now – my daughter is a legal assistant and my son is an airman in the U.S. Navy.)

I had a lot of work to do, if I wanted to live and beat this disease.

My kids are my strength and they gave me energy and willpower to overcome so many bad days. First, it was hiding how I felt in front of them, then having the strength to show them that I am human and felt constant pain, but that didn’t mean I was going to die. My bad days didn’t outweigh all the good days. I’m a fighter because of my kids.

Do you have any practical pointers or words of wisdom for others who are juggling lupus and raising a family?

Here are three of my constant reminders that help me:

  • “Give yourself a break sometimes.”
  • “You don’t have to be perfect.”
  • “You don’t have to do it all alone.”

These are things I learned throughout the years. Ask for help – that was the hardest thing for me. If you can’t pick up your kids daily, ask a neighbor who is going to pick up their kids anyway. When you’re feeling better, offer to pick up their kids for them, so they can run an errand occasionally. People don’t mind helping others now and again.

If you’re feeling alone, vent in forums like PatientsLikeMe, in support groups like the ones provided by HMHB, or to close friends. There’s always someone willing to listen to you for a little while and they are comfortable telling you when enough is enough.

It’s okay to feel sorry for yourself occasionally, but it’s important not to stay there and move on. It always gets better.

I completed my bachelor’s degree, then went on to my MBA while juggling team mom duties for football, but I had to make deals with the kids on who needs me more as I couldn’t continue to do all the sports while working and school. Something had to give, and I didn’t want it only to be me. Communication got us through the hardest years and I wasn’t afraid to ask for help after a while. Kids are capable of so much more than we give them credit.

Has living with lupus shaped your family or brought your family closer in any way?

I think living with lupus has helped my family become even closer because they had a fear of losing me, so both of my kids are extremely close to me. They appreciate the little things a lot more.

When they were growing up, we used to save our change from January 1 to December 15 and decide who we wanted to share it with, like families struggling financially around the holidays. The most memorable year was when my son suggested we find kids with lupus and make their Christmas merry. We had saved over $600 and bought gifts and took it to the children’s hospital. That was many years ago, but it’s something I will never forget.

Are you a parent or guardian who’s living with a health condition? Join PatientsLikeMe or log in to connect with more than 17,000 members who’ve told us they’re interested in the topic of parenting (once you join/log in, you can find these members here).


Advance directives: What are they and why should you have one?

Posted 11 months ago by

If you find talking about end-of-life care and advance directives isn’t easy, you’re not alone. One 2013 survey by The Conversation Project found that while 90% of respondents said talking about it with loved ones is important, only 27% actually started the conversation. And according to another recent study, as few as 38% of patients living with a chronic condition in the U.S. have an advance directive.

But planning ahead about the decisions you want your care team to make if you’re unable to communicate — and putting it in writing — can bring peace of mind and reduce confusion for loved ones later on. Let’s take a closer look at what advance directives are all about and how to start the process.

What’s an advance directive?

According to the ALS Association, “an advance directive is a legal document used to instruct others about your health care wishes. It acts as a guide for your loved ones and health care providers to make health care and treatment-related decisions on your behalf, should you become unable to convey them due to illness or incapacity.”

Types of advance directives

There are a few different types of advance directives that vary by state. The two most common are the living will and the durable health care power of attorney (or health care proxy). Let’s break these down:

living will is a formal, legal document (written and signed by you, the patient) that informs certain future health care decisions (about medical treatments like pain treatment, tube feedings or the use of breathing machines) when you’re unable to make decisions and choices on your own. These are for situations involving terminal illness or permanent unconsciousness.

durable power of attorney for health care (or health care power of attorney/proxy) is a legal document in which you name a trusted person to make all your health care decisions if you’re unable to on your own. The proxy can decide on treatments or procedures based on what you do or don’t want. If your wishes aren’t known, the proxy can decide based on what he or she thinks you would want.

What are the benefits of having one?
  • Peace of mind. It gives you an opportunity to plan for the future and talk about your health care preferences with your loved ones and care team. Knowing that they understand and respect your wishes can give you peace of mind that your wishes will be honored even if you can’t communicate.
  • Protect your loved ones. An advance directive, and the conversations leading up to it, give your loved ones the ability to understand what you would want in different health care situations. If they ever need to make decisions on your behalf, it can help minimize guilt and uncertainty.
  • Empower your care team. Your health care providers will know how you would want to move forward with (or stop) treatments.
Do you need a lawyer?

A lawyer could be helpful but isn’t necessary to set up an advance directive. State requirements vary so be sure to stay on top of what forms are required in your state.

Can you change your mind?

Yes, you can make changes to your advance directive at any time, for any reason. Make sure to keep your health care agent/proxy/decision-maker in the loop on any changes and keep updated documents on hand.

Things to consider:

Advance directive forms list examples of different situations to think (and talk) about with your family and care team, depending on your situation. For example, here are a couple ALS-specific treatments to consider:

  • Feeding gastrostomy tube placement (some members have talked about this in the forum)
  • Invasive mechanical ventilation with tracheostomy
Ready to start the process?
  • Choose a trusted decision-maker and start the conversation. Pick someone (or multiple people) as your health care agent or proxy (decision-maker) and talk to them about your wishes. Open and honest communication is important so they can understand your preferences and make decisions on your behalf. Check out this Conversation Starter Kit.
  • Talk to your doctor (check out this how-to guide)
  • Put it in writing. Outline what type of care and treatments you would or would not want, depending on the situation & possible outcomes. (The Five Wishes document could be a helpful guide to writing your wishes)
  • Download your state’s advance directive form
  • Make copies and give them to your family, loved ones and care team. If you make changes, be sure to swap out the old versions with the updated ones.

Check out these resources to learn more about the different types of advance directives and how you can start the process.

Do you have an advance directive? Join PatientsLikeMe today to learn more and see what the community is saying.

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