For People With HD/JHD & Their Caregivers
By Lauren Holder
Figuring out what to get someone who has Huntington’s disease can become more and more difficult as the disease progresses.As promised, here is a list of great gift ideas for a person with HD/JHD, as well as some ideas for the caregivers! Happy Holidays!
- Subscription to Netflix or Hulu or Audible
- Weighted blanket
- iPad or tablet
- Mighty Mug – https://themightymug.com/
- Gift certificates for getting nails or hair done, etc.
- Gift certificates for ice cream or lunch
- Weighted pens/pencils
- Adult coloring books with markers (Osborne Big Color by Numbers Book, Books Dream Big, Draw Bigger, Draw, Doodle Design & Doodle Imagine, Draw) You can find these on Amazon.
- “Tickets of Love”
This is a personally-made booklet of coupons that is filled with little gifts the giver (child or adult) wants to give the recipient. For example:
- This coupon is good for a free foot rub, or
- A free hair wash and style,
- A free nail-coloring session,
- An afternoon walk,
- A picnic lunch,
- A reading from a favorite book, out loud,
- An afternoon ride to the ocean (lake, park, etc.)
Other Great Ideas
- Chapstick (a good stocking stuffer item!)
- Slipper socks with ‘treads’ on the bottoms
- Funny, colorful socks
- Gloves, winter hat, and/or scarf
- Purifying Salt Lamp
- Essential oil diffuser
- Motion detector lights inside and outside the home
- Electric toothbrush
- Memorabilia from favorite sports team(s) (i.e., jersey, t-shirts)
For the Caregiver
- Gift certificate to a local cleaning service
- Hire a Virtual Assistant for an hour or two every month to help with staying organized.
- Create a break for the caregiver! Schedule it, make the plans for them, oversee the help (i.e., getting a manicure or having lunch with a friend).
- “Host the holidays” – Decorate the inside and outside of the home, take care of the planning or the cooking, etc.
- “Tickets of Love” (See above.)
***Please check out https://dailycaring.com/the-11-best-holiday-gifts-for-caregivers/ for these and other ideas for caregivers!***
You can also listen to Help 4 HD’s archived program about gift giving on BlogTalkRadio. Listen to Katie Jackson and Lauren Holder’s discussion at http://www.blogtalkradio.com/help4hd/2018/12/12/gift-giving.
Surviving the Holidays
Surviving the Holidays
by Lauren Holder
Happy holidays! ‘Tis the season to be stressed. At least that’s how it feels for me, so I decided to do some digging this year and find some tips for surviving the holidays.
I found some really great articles about caregiver tips for the holidays, and I figured I would share my top five tips with you.
- Be flexible! There is no such thing as perfection. I think in every article I read, it notes to not expect everything to go right or to be perfect, because it won’t be. So we need to be flexible and willing to adjust with the issues and changes that arise.
- Make a holiday calendar and to-do list (Beal, n.d.). This is helpful to both the caregiver and the person with HD. I know for my father, it helps him to know what to expect, so to speak. If he can look at what’s coming up, he prepares a little better mentally; if we spring it on him the day of or the day before, then he’s unwilling to go because it’s a last-minute change in his routine. It also helps my mom because she knows what she needs to prepare for him (and for her) before the event.
- Start new traditions – This one has to be my favorite! The article from AARP says, “Instead of focusing on losses and what you and/or your loved ones aren’t able to do this year, try doing something new. If your care recipient has trouble getting around, drive through a holiday light display or watch a holiday concert on TV. If you can’t make it to a holiday gathering, have a video chat. Are your loved ones unable to participate in decorating this year? Invite a friend over to help, with your loved ones nearby to watch and cheer you on. Start a home holiday movie night tradition — or watch old home movies so everyone can participate.”(10 Tips for Caregivers During the Holidays, n.d.)
- Have a safe space. If you have a big get-together at your house, or you’re going to someone else’s house for a get-together, establish a space for you or your loved one to be able to take a break from the noise and commotion. Maybe it’s the patio outside or an empty bedroom, but have somewhere to go to relax for a minute in case you or your loved one needs to.
- Ask for help! This seems to be another one that can be found in EVERY article about surviving the holidays. Ask family and friends to help with cooking or wrapping or doing the shopping. This seems to be the hardest one to do, but it’s the most necessary, because we can’t survive the holidays alone.
If you would like to look at some of the other tips for surviving the holidays, you can visit the following links:
10 Tips for Caregivers During the Holidays. (n.d.). Retrieved from AARP: https://www.aarp.org/caregiving/life-balance/info-2018/holiday-stress-tips.html
Beal, E. (n.d.). Surviving the Holidays: Strategies for Caregivers. Retrieved from Benjamin Rose: http://www.benrose.org/SuccessfulAging/sa_0511.pdf
Lauren Holder is the program director for “Help 4 HD Live!”, the first online radio show dedicated to the Huntington’s and Juvenile Huntington’s disease community.
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Finding a New Normal
Finding a New Normal
By Sharon McClellan Thomason
“December 15th will be two years since we lost Cory,” says Stacey Sargent, who lost her son to JHD when he was 21. “Every holiday and special occasion feels incomplete; however, Thanksgiving and Christmas are especially hard. I feel anxious this time of year, trying to remain strong for everyone else in the family, when all I want to do is hide under the covers and cry. It’s exhausting, actually. I go somewhere and see Christmas lights or decor, gifts that I would have bought him, and my heart breaks all over again.”
As Stacey so poignantly puts it, the holidays can be an especially challenging time for people who are grieving the loss of a loved one. The holidays can also be daunting for those who are still living with Huntington’s and Juvenile Huntington’s disease. Whether it’s anxiety over being around a lot of people, swallowing and choking issues, having a loved one in a care home, dealing with irrational behavior or aggression, or just plain missing someone, holidays can be anything but jolly for people with HD/JHD and their care partners.
So what do you do with these feelings? How do you cope? Can you do more than just “get through” the holidays? The key to surviving the holidays lies in finding a new “normal.”
Stacey says that since Cory passed, “A few close friends give me angels for Christmas, and the fact that others think of him gives me such joy. At our annual family Christmas party, something always happens that makes us all think of Cory, and that, too, brings me joy, though I usually ride home crying at the heartache of missing him so much. Missing him doesn’t getting any easier. I think of him daily; this time of year, it’s just harder to hold back the tears. My husband asks me every Mother’s Day, birthday, anniversary, Christmas for gift ideas . . . the one thing I want, my son, he can’t buy or make or give me in any way. We place something of his under the tree, a pillow that he didn’t get to open or see two years ago. We make donations in his memory. We (Terry and I) release a balloon on his birthday, Angel Day, and Christmas. These things help a small bit, and my faith. I know he is celebrating in Heaven, and try to imagine the party there……”
Others try to carry on traditions started by the loved ones they have lost.
Katrina Hamel, who lost her mother to Huntington’s five years ago, says, “Thanksgiving and Christmas remind me so much of my mom and her holiday spirit. She dressed up, she decorated from top to bottom, she always invited everyone over and always cooked a feast, for as long as she could. This year, I will channel her. I have invited family and friends, I will cook, I may dress up, but most definitely, I will decorate! I choose to give the best of myself to others because it makes me happy!”
Holidays can be hard not just for caregivers but for those who have Huntington’s, too.
“I find that Christmas is the best and worst part of the year for me,” says Cameron Wedge Howard. “I absolutely love the holiday decorations, watching my kids open stockings and presents . . . there’s no better feeling. But at the same time, we’re busy with extended family, and that’s overwhelming. Also, my impulse control is horrible, so I lose myself in buying presents. I’m not fond of stores, so I pretty much shop online. It makes it easy to go overboard.”
Dealing with all the emotions, the excited chaos, and grief can mean it’s time to find a new “normal.” For someone who is struggling with impulse control, that may be as simple as handing over the credit and debit cards to a trusted family member so that spending doesn’t get out of control. Another possibility is to provide the loved one with a pre-paid card that limits what the person with HD can spend.
Since anxiety is such a huge part of Huntington’s disease, anticipating and avoiding the things that cause anxiety can go a long way toward making happier holidays for everyone. This, too, can be part of creating a new “normal.”
“Planning to serve the meal at the regularly scheduled time may be helpful,” says Ginnievive Patch, who has a husband and two sons with HD, “and minimize extra noises (no TV or music), since family is noisy.”
Limiting holiday outings and limiting the number of people sharing holiday meals (immediate family vs. extended family) can also help to ease anxiety. For the caregiver, allowing others to help prepare the holiday meals, ordering food from a restaurant, or even going out to eat at a restaurant are all possible alternatives to wearing yourself out by trying to juggle cooking and caregiving. Again, finding a new “normal,” one with new traditions that can provide everyone with the most enjoyable, stress-free holiday possible, is important.
If your loved one is in a care home, you might consider taking the holiday to the person rather than bringing him/her home. Nursing homes and assisted living facilities are usually willing to let the family have the dining hall or a conference room for a celebration. I can remember when my daddy (non-HD) was in the hospital after suffering a stroke. We took a small tree, presents, and our traditional holiday meal to the hospital and had Christmas there.
Depending on the temperament and care needs of your loved one, you may be able to bring him/her home for the day. When my husband was in a nursing home, a family member would bring him to his mother’s house for the holiday, and then one of us would take him back.
Jacki Harrison, who lost her husband, Ken, two years ago, says, “I was a married widow for ten years, so he was gone way before he left this earth. After a while, it was difficult him going to our friends’ anymore for Thanksgiving. He would sneeze at the Thanksgiving table, and the saliva would reach people’s faces. He would growl, groan; he would need to go to the bathroom and needed help doing so. He would try to talk, and people would get impatient, although [they would] be polite. This was the point we realized it was better for him to stay home. He was much more comfortable being at home, even alone for one or two hours, and then in later years with [his sitter]. The first couple of years, I felt bad for him, but I understood how much better it was for him to be at home where he was comfortable. Also, even though I felt bad, it was much easier on me, too.”
Jacki says that she and her children go to visit Kenny at the cemetery and say prayers during Thanksgiving. Her daughter talks privately to Ken, and she talks to him, telling him her heart. Their son reads prayers from the Jewish prayer book. This has become their new “normal.”
Kevin Jess, whose wife is in a nursing home in end stages, says that as Jehovah’s Witnesses, he and his family do not celebrate the holidays, however, “My wife, Sheila, always celebrated it. In her current condition, it is not possible for her to do things such as gift shopping or baking, etc. She also prided herself on an incredibly large collection of village pieces that took up an entire room. She enjoyed the smell of turkey roasting and pumpkin pies baking, and yes, she enjoyed the music which drove my son and me crazy. However, since I also love turkey and pumpkin pie, as well as giving and receiving of gifts, I usually gave gifts at other times of the year, when I could afford to do so, and when it wasn’t obligatory. I also do cook a turkey and all ‘the fixin’s’ once a month. She always thinks it’s Christmas, and during the holidays, I make her a sock to rummage through, and I turn on her holiday music that she loved as it stirs memories that she cherished.”
Preparing a holiday meal that is both palatable and easy to swallow for those with dysphagia (swallowing disorder), can require some real creativity to find a new “normal.” In the Nov. 14 issue of Today’s Caregiver e-Newsletter, Bobbi Carducci shares the following recipe for “A Dysphagia Thanksgiving”—her creation for her father-in-law who wanted “real” food:
Turkey – I tried pureeing both dark and white meat turkey and found it too grainy so I used a well-known brand of junior baby food and pureed it further to remove all lumps.
1 cup homemade stuffing – Place in food processor with 2 tablespoons of homemade gravy. Puree until smooth, making sure all the lumps are removed. (Add gravy one teaspoon at a time as needed.)
½ cup mashed potatoes – mash or puree to remove all lumps. Add gravy to the potatoes for flavor.
½ cup creamed spinach – puree until very smooth
For dessert – remove crust from one slice of pumpkin pie, top with whipped cream.
The measure of the meal’s success was her father-in-law’s comment that, “This is just like my wife used to make.” (https://caregiver.com/articles/thanksgiving_w_dysphagia/?utm_source=Caregiver+Newsletter&utm_campaign=844894ef8d-Caregiver_Newsletter_10_10_17&utm_medium=email&utm_term=0_8c5d5e6a5e-844894ef8d-94190545&mc_cid=844894ef8d&mc_eid=ce0f1754d1)
Thanksgiving this year was an opportunity for me to practice finding my new “normal.” My son suffers from extreme, isolating anxiety and did not want to be with anyone on Thanksgiving; he emphasized, though, that he wanted me to go and be with people I love and have a good time, that it wasn’t going to bother him to be alone and miss all the festivities. I had to fight back a lot of guilt in order to do this, but since plans had been made a month before my son decided he couldn’t go, I went ahead and joined family and friends. Was it hard knowing that Randy was home alone while I was off having fun? Yes. Was he happier not having to leave his comfort zone to socialize with people? Yes. Would he have enjoyed Thanksgiving if I’d prepared dinner at our house and invited people over? No. This goes against everything I’ve always believed about celebrating holidays, but this is our new “normal.”
I suspect I’ll get to try it out again at Christmas.
Tune in to “Help 4 HD Live!” on Wednesday, Dec. 6, at 4 p.m. Eastern/1 p.m. Pacific, to hear Katie Jackson’s interview with Dr. Bonnie Hennig-Trestman, a clinical therapist providing teletherapy.
The Huntington’s Post is made possible by grants from Teva Pharmaceuticals and the Griffin Foundation.
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