In my position as the Lived Experience Coordinator, I've had the privilege of meeting some amazing caregivers, as they share their stories and advice to help improve elder care supports and services in South Eastern Ontario. Recently, I met Ryley who for many years has been responsible for both a father and mother dealing with Alzheimer's. After hearing some of the lessons she has learned in her journey, I asked if she'd be willing to share some of her tips with us. Thank you Ryley for reaching out to others who are carrying such a heavy burden and giving them some tips to make that load a little lighter.
Things You Can do to Improve Quality of Life While your Family Member is in Long Term Care
Firstly, let me say that when I ventured tentatively in to visit my mom in the long term care home for the very first visit I was sort of scared and quite nervous, learning the door codes, worrying about other residents trying to get out the door and unsure where to go. Having dropped my mother off days ago and I had not even gone inside with her! I simply had lied to her about why she was going there and I drove off! I was freshly grieving the death of my father and some days wondered just how clearly I was thinking. So, when I finally made my way into the building and I suddenly rounded a corner and found my mom walking away from me, she turned back and looked up at me and she said "YOU can just turn right around and go back out.Ē Well, to say the least my heart dropped- but I persevered and we have such great visits and are building great memories together. The reasons we have such great visits is that I work hard at it and here are some ways that I do that:
I ensure that the Nursing home knows all there is to know about my mother:The Alzheimerís society provides a great booklet that you complete about your parent and you then provide a copy to all caregivers, providing them with everything they need to know about your family member. This booklet addresses things that matter like how to calm your parent when upset, what their abilities are and a little about whom they were and what they are like etc. When I delivered my booklet to the nursing home they were SO excited and pleased to have all this info at their fingertips to share easily with staff. Such a great idea!!
- In addition to that, I give caregivers a cheat sheet, with some of the stories that mom likes to tell over and over, all they need is enough info to prompt her to tell the story once again.
- Copy activities that the nursing home is offering: Our nursing home offers a program that is set up like a nursery with life like dolls. For me that meant buying my mom a second hand baby bassinette to put all her stuffed animals into. What caught me off guard was that she thought I was pregnant and offered me pregnancy advice and yet at the same time she gave me heck for making a mistake in life!
- They offer a gardening program, so I asked to access the large table of plants one on one with my mom and she enjoys deadheading the plants and transplanting snips of plants.
- They offer a cooking program so I access the kitchen and although mom has little interest in cooking we have had great success when I bring all the makings of a sandwich in various containers and we enjoy making sandwiches together.
- They offer music often so I purchased a childís MP3 player. I found that if you buy things in the children section they are easier to use. The one I bought called the SWEET PEA will turn on by pressing ANY button at all and it shuts off automatically and it comes in a hard plastic indestructible case that is easy to hold and easily labeled with very few buttons. You can load it with your choice of songs from the internet and I found this to be an invaluable toy when we were sitting in waiting rooms for various appointments. My dad would be happily listening to his favorite comedians like the Smotherís brothers or Abbot and Costello or he was singing out loud (at little too loud at times) to his favorite oldie songs.
- They offer a folding program, so bring things to fold, which can be as simple as Kleenex or I have purchased facecloths at the dollar store. Once we have them folded I take them to the bathroom, give them a good shake out of sight of and I bring them right back as if I have a new stack to fold.
- Get the email for the activity coordinator so that you can develop a relationship with her and you will then be able to remind her to remind your mom to attend activities and between you and her you will be able to tag team your mom into attending more events and activities and next thing you know the activity coordinator is emailing you suggesting your mom be a part of something that you may not have even thought of!
- Outside the room each resident has a glass box or memory box designed to keep special items in that can indicate to staff more about my mom and her past and it often will provide a source of conversation for the staff person but my mom and I like to change this box with the seasons by purchasing dollar store items and spending an afternoon decorating the shelves.
- Ask the nursing home if you can put up a bird feeder outside the window. We have done this and many other residents are actually able to see it from the kitchen and the second floor so we are providing entertainment for many.
- IF you really want to accomplish something such as a hair appointment or ensure success at attending an activity I phone her prior to remind her. If you donít have a phone, remember that nursing homes are obligated to provide the use of one. My motherís home involves the staff carrying cell phones for work and they have always been willing to use their cell phones to allow me short communications with my mom.
Purchase a phone that will be most easy to use as she progresses. Go straight for the phone where you can put names on the phone and yet she can still dial numbers. Forgo caller Id and message machines. My mom is at the stage where she just pushes a name, any name at all and she never knows who she is going to get which is just fine.
SKYPE: SKYPE is something we do weekly with family out of town. Mom calls it the "tv computer thingĒ and she requests it often. At this point she is able to walk around with it and brag and introduce her kids to whoever is in the hall! Sometimes we creep family on facebook to see what they are up to and to see all the pictures they post.
You Tube: Sometimes we view youtube funny videos of cats or dogs doing funny things.
Magazines: I order magazines vs books, as the ability to read and retain diminishes. Short stories are endured. I find Readerís Digest is just perfect but picture books are also very well liked.
Private Care: IF you can afford a private caregiver, even for just an hour visit once in a while I find that I can return to being "a daughterĒ again even if itís only for a short while. For me, personally the biggest benefit I got from having a caregiver in place prior to nursing home placement was that the caregiver was able to greet my mom on her arrival the very first day, and when I was asked to leave she was able to stay and be my eyes and ears and with texting she was able to give me great comfort. Another benefit is that when a illness or contagious outbreak occurs on the ward, the first thing the home will often do is limit resident contact by cancelling activities for as many days or weeks as necessary. By having private care staff in place, I found that they are willing and able to visit during these times (when I was not lol) and they could provide my mom with activities to keep her entertained during these times.
Handicap Sticker: I keep momís handicap parking sticker in her chart at the nursing home so that any family member taking her out can access it.
Two is Better Than One: When you purchase an item that is a favorite and would be sadly missed if it was to go missing and lots of things go missing, then make sure you purchase TWO not just one and keep the other one handy. We found that some of momís very favorite things would actually cause her stress about them going missing and so we resorted to moving favorite things up high. We were also advised that the light fingered often will choose to remove items lying around vs on a shelf. We have two TV remotes. You may not need two purses but having two wallets has come in handy! I purchase them at the dollar store. I have resorted to several pairs of glasses and the optometrist will give a discount and not even bother asking for an appointment which is nice. A fellow resident liked to brush his teeth in momís bathroom and so we kept several toothbrushes on hand.
I Know her favourite Tv Channels compared to my providerís tv channels so that I can phone her and guide her to watching a favorite or interesting show. I keep a daily calendar of shows that might interest her.
Buy a label maker for labeling knickknacks, stuffed animals, anything that is not tied down!
Photographs: Take a picture of favorite items for when they go missing.
Batteries: I keep hearing aid batteries on me, it always seems to be that when we are out that the batteries suddenly quit.
Choose a hiding spot in her room (up high on a bathroom shelf) works well for me, and use it to put things for other family to access such as nametags for her clothing, should they wish to iron on their own label. (the laundry service at the home will provide the labels)
Buy fake wedding rings and exchange the real ones for the fake ones (should family or your mom be upset the day they go missing!)
Taking in Food: It is great to enjoy some takeout food together or a snack you have made, BUT never leave more food in the room then you can eat during your visit as I came close to inviting a case of food poisoning!
I try to get mom a "job.Ē They say a sense of purpose goes a long ways towards having a long life. She used to deliver the seniors magazine within her apartment building, so I have enquired about her delivering mail, the activity calendar of events or the newspapers (with assistance of course) She has this idea that when the doors to the courtyards are open then they should have an OPEN sign on them. I pretty much ALWAYS pursue ideas that mom suggests. I find that when she is advocating for herself then I need to be paying close attention as this is her way of expressing her needs. I looked into purchasing an OPEN sign and she has volunteered to put the sign on the door (with assistance obviously) although we never did get around to doing that.
Keep a bag packed for outings (it might contain extra puffer, Kleenex, water bottle, hearing aid battery, sunglasses, change of clothes, wallet,) I keep a rug in my car to cover my seat with in case we should ever have an accident (the bladder kind). While you are at, you may want to also have a small bag packed at home of your own personal items that you would need to get you personally through any emergency visit where your stay is extended IF the nursing home is not in your town.
Post Signs: When other residents came into her room uninvited we posted a large "DO NOT ENTERĒ sign and a large STOP SIGN as a visual cue for others.
Whiteboard: My mom was used to having a whiteboard prior to her admission so we bought the peel and stick kind at Office depot and put it on the back of her door. We found it was best to just record the times of events that interested her vs putting ALL the activities the home offered on it.
Everything in itís place: I TRY (Haha) to keep things in the same place and I FOCUS on what they look like so that when she calls me looking for something I can respond "chances are your glasses are in the blue eye glass case in your top drawer. Knowing that the call bell has an "orangeĒ button on the end of it to push is very helpful! Knowing that the tv remote has a POWER button vs on/off is helpful when guiding her to use it.
Hand Held DVD: Purchase a small handheld DVD player, you can set up a movie and walk out and you just recharge the machine next time.
Notes: I post large print notes on the walls of my momís nursing home that say things like "the nurse can be contacted 24hrs a day, Please do not hesitate to use your call button to call a nurse at any timeĒ My mom would respond well to notes, and reads them over and over so an effective way to get a message across or a reminder is to write her a note. I even ask Doctors to do the same. She pays more attention to notes written on prescription pads. Eg Shirley I need you to do your best to eat more meals in a day. Because she likes notes so much a diary and a sign in guest book are some of her favorite things. And one that says "Shirley wears hearing aids!! Please ensure they are IN! AND working!
Optometrist Labeling: I had an Optometrist label eye glasses with name and phone number for free. I ended up also using a bright nail polish on the arm of the eyeglasses so that I could spot them quickly.
THANKS Ryley FOR YOUR GREAT CAREGIVER TO CAREGIVER TIPS!!! ~Sharon