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.
Gifting and HD
Gifting and HD
By Sharon McClellan Thomason
It started with a post on Facebook. Ashley Yerby wrote, “My mom has HD and has been in the nursing home for a little over a year. She is wheelchair bound. I’m wanting ideas for Christmas gifts.” Ashley added, “I am going to get her a build-a-bear with our voices on it, and probably some socks and stuff she needs. I also found a wheelchair pouch to keep her phone and such.” She wanted more ideas, though, especially from people who make/sell things for HD patients.
The response was overwhelming, with many creative, outside-the-box suggestions.
Valerie Roark suggested, “Specialized cup that makes it easier to drink from, but monogrammed in vinyl. My uncle loved his ‘sippy jug.’ Movies or home videos, pictures, collage art, anything she enjoyed doing that she might still can. We bought lots of candy, and slippers. Take her online shopping for something she might like. If she’s a delivery flowers or goody basket kinda gal, she might enjoy looking at flowers. The bear is a good idea! It’s hard to buy for parents but especially when they have limited mobility. Monogrammed bathrobe, or shirts with her grandkids names. . .”
I thought back to when my ex-husband was in a nursing home and how we struggled to come up with gift ideas for him. Sweat shirts and sweat pants were always welcomed. He had a TV and VCR in his room, so we’d get him favorite movies that he and our son could watch together. He also had a CD player, so our son would create playlists of songs he knew his dad loved, and he would burn CDs for him. We tried audiobooks, but he said he couldn’t concentrate or focus well enough to keep up with the stories. Framed photos and artwork done by our son were always favorites. He loved the giant teddy-bear our son gave him one year and named him “Rambo,” his nickname for Randy. Even after he had a feeding tube, chocolate milkshakes always brought a great big smile to his face.
Carol Morgan suggested, “My mother loves a photo frame I recently gave her—like a bulletin board with ribbons stretched across it in a diamond pattern. Easy to stick a lot of 4×6 photo prints in it and to change them. We are getting ready to hook up a DVD player and take some of her collection of old shows. She is wheelchair bound in assisted living, with moderate level of dementia. Staff will change the DVDs for her. We also have a white board in her room—handy for staff to communicate with me.”
Ashley said she’d thought about a memory board, but didn’t think she could have anything with thumbtacks because of suicidal episodes. Several people suggested alternatives to thumbtacks, including crisscrossed ribbons, magnets, double-sided tape, glue dots, and a sticky, malleable product called Tac. Another possibility might be Velcro.
Amy Lou said that her husband loved music and suggested a radio or mp3 player. “The music really calmed him. He loved me playing his fave Pandora stations for him,” she added.
Sandy Laundra suggested decorating the room, adding that because her mother got moved to different rooms frequently, “You can get stick-on decals that don’t ruin walls at Dollar Store or Michael’s. You can get sayings and designs. . . . They also come down and are reusable.”
This suggestion triggered a memory of decorating the door to Paul’s room and putting a small Christmas tree on a table in his room.
Sandy added that another cute idea was laminated artwork made by their kids. Amy Lou added, “I made a scrapbook using the clear plastic inserts that holds papers. I put birthday cards in them, photos, movie ticket stubs, etc. The inserts already are three-hole punched, ready to go in a binder.”
Natalie Kristin Canuso said, “A photo book, soft blankets, pillows, make her a CD with music she enjoys . . . those are things I did for my mom when she was in the home.”
Janet Buhagiar suggested borrowing talking books from the library and added, “I created a garden on the balcony of her room; it’s nicer then looking at bricks.”
Marie Clay said, “I’m going to have a blanket made for my daughter with her favorite photos on it.” Items like this can be made through online sites such as Personal Creations.
Tatiana Adler suggested a basket of treats and favorite drinks/juices.
Doreen Schellerer Norwood added, “How about a poncho (with her name on it)? Hopefully she is taken outside when the weather is good . . . easy on, easy off,” and the ever-popular, “Chocolate!!!!”
Sandra from Australia recommended, “Maybe a pamper pack with all her favourite soaps, body wash, shampoo/conditioner, powder, or deodorant.”
Vicki Owen added, “My mom wasn’t in a nursing home but loved looking through her photo albums . . . maybe make one with pictures of her life . . . young to now.”
For my son, who is not in a care facility but is isolated at home by anxiety, gift ideas can also be tough to come up with. We’ve decided that comfy clothes, things for his room (bed linens, a rug, wall décor), and gift cards for online movies and music are the things that will give him the most enjoyment. He still enjoys playing his guitar and drawing, so things like guitar accessories and art supplies are also possibilities.
For some of our loved ones, it’s become difficult to unwrap a package, so decorated gift boxes with a top that just lifts off or gift bags might be an easier option.
Whatever your loved one’s situation, there are sure to be things that will delight him or her! Sometimes it requires just getting creative and thinking outside the box.
While we’re struggling to come up with gift ideas for our loved ones, we need to think of gifts for ourselves, too, gifts that will keep memories of our loved ones with us forever.
“It’s so important for us to record our loved one’s voices,” says Katie Jackson. “So many people told me to do that, and I’m so mad at myself that I didn’t record more of Mike talking, ’cause now he can’t talk, and now it’s too late.”
Other ideas include videos, handprints, photo ornaments, a locket with hair inside it, and thumb- or fingerprint necklaces. Kits for making many of these personalized items can be found online. The key is to think ahead to what you will most want to hold on to as a keepsake for memorializing your loved one.
Whatever gifting you decide on, we at Help 4 HD International hope that you and your loved ones have a Merry Christmas and a Happy Hanukkah!
The Huntington’s Post is made possible by grants from Teva Pharmaceuticals and the Griffin Foundation.
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