I have been making things for my mum's room/area out at the aged care facility. I put butterflies hanging from the ceiling, so they are bright and attached to ribbons so they move. I put a big sign up for mum that said We love you mum/ nanny and hearts that say Your always in our hearts. I always did a square family tree with butterflies for each family member. I only did her children and their partners, her grandchildren, her parents, her sister and my dad her ex husband. I put their names, dob, title and a picture( which i hadn't gotten printed yet, so they will go up on my next visit). This family tree will help the nurse learn and remember who we all are and can talk to mum about it daily so she will always remember who we are and it helps simulate her brain. I have also started another project which is a poster photo board which will have a photo with a description under the photo. Which will be changed weekly on my visits Now you wondering why i did this one, will by having it will get the nurses to talk to mum about the photo and help her remember and it also helps the nurses have something to talk about with mum. After a while the nurses don't have things to talk to mum about and they thought it was a great idea.I also put a poster on the door and made it look cute while providing info on mum and photo i will be adding on my next visit. I have also made an exercise book in Sharon visitor diary, which her visitor can write what they talked about or add a photo to the diary. These will help the nurses talk to mum about her visitors and know what she has been up to. As you all will know it is hard to talk to some nurses and with shift changes it even harder from them to know what mum has done on their off shift. I have also taken a communication book out so any nurse or any other staff can commute with me and this way i feel close to mum, as i can't get out there everyday like to wish i could. And this way i know what she has done and if she needs anything. It's also hard when you miss a phone call and don't know who to call back, this way they just write it the book. I put colourful flowers and butterflies on her window so it looked bright and the light should light it up even more in the mornings. Everything I have done is to help mum simulate mum brain and help build a relationship between mum, the nurses and us.
I have also have some visiting tips for people with Huntington's disease: visit at meal times because people with hd love their food and help nurse care for the other people and when the other people have visitors at meals the nurses will be free for your person with hd. And some people with hd won't eat their meals if their loved ones aren't there. And your time visiting will be better spent. I also think reading a book to people with hd is a good idea because it's something they can't do anymore and it's great because sometimes there isn't enough to talk about and your time will be for fulling. And here is something to keep in mind when you are visiting your loved ones, the nurses will leave you alone to visit and will not interrupt your visit even if they have a job to do unless your visit is over 3 hours or the really need too. When you are visiting your loved one it helps the nurses take care of the others and when they have visitors they will have more time for your loved one. I always wonder why the nurses weren't doing anything for mum when i was visiting, so i asked Christine from hd qld and she kindling explained to me how it worked.
I'm going add photos now of mum's room.
I hope found this blog useful and interesting. The most important thing is take it step by step and take in what you have done and take the rest in as you do it. Don't overwhelm yourself and try to add or change things weekly so they are always fresh and new.
Thanks for reading about my project.
p.s Thank you to my loving husband for getting on the chair to put them all up for me. I hate heights lol