Today's salad is a dementia salad with only one ingredient. What do you do when your client, resident or loved one says, "I wanna' go home!"?
This is a very typical mantra with those in late stage dementia.
A facility may be the only way to keep them safe at this point, so we as paid caregivers need to figure out how to make this transition less scary and more welcoming.
Imagine you wake up every morning and realize you are in a different country. No one speaks the same language you do. The food is different. You don't recognize a single person there. No matter how many times you say, "This isn't my home, I want to go home", someone says, "Oh no Mrs. Smith you live here now. See, here are your pajamas and your toothbrush. We even have a bed for you to sleep in with a picture of your grandchildren next to it." "Grandchildren! I don't have grandchildren! I'm only 30 years old, and I haven't slept in a single bed since I was 12. This is NOT my home!"
Can you imagine how frightening this would be? You might get angry, belligerent and loud because no one will listen to what you are trying to tell them.
Some facilities will label this a "behavior" or "acting out"; seems more like human nature to me.
A resident who has to move into a facility has given up so much of themselves. They spend their whole lives living a certain way among their own things and then one day all of that is gone. They have to downsize or maybe someone else has done the downsizing for them. They are now in a little room with just a few of the things they had in their home. They are with people they don't know and as the disease progresses, even what once was familiar becomes unknown.
If you again equate this with traveling, think about how you feel when you stay in a hotel. You have brought a few of your things from home but yet, no matter how long you stay, the hotel room will never feel like your home. This must be how they feel every day.
If you can find ways to put yourself in their shoes even for a moment, you will be better able to care for them.
As caregivers, we are responsible for finding ways to help those in our care feel more safe, secure and "at home". With this disease, this most definitely will not always be an easy task.
If the person with dementia is in a facility, it should be easier than if you are a single person providing care for a loved one.
You will have training, a locked unit for safety and coworkers to step in if you are getting nowhere.
Go in with compassion.
In this place, nothing looks familiar. Nothing sounds familiar. The smells aren't familiar. The faces aren't familiar. It is no wonder they want to get back to the home they once knew.
Long term memories stick better than short term memories, so even if the resident has lived in the unit for years, this will not be the place they associate with the word "home".
I have watched a resident pack their things every night for weeks. Only to have to repack them the next night after an aide has put everything back in it's rightful place.
I may begin each day with a resident, having to explain who I am, what city we are in and why they are here.
I may be charged with getting a resident up for breakfast who has been up for hours, coat on, purse in hand and ready to flee.
I better have some tools on hand to calm and redirect.
Arguing with a dementia patient is never the right answer. They are unable to change the way they are thinking, so you must do the changing.
The first thing we need to do is try to figure out what has caused this most desperate need to escape or go home in this moment.
If we, as paid caregivers, are doing it right, we may know exactly where Mrs. Smith used to live and the best way to calm her when her morning begins with; "I want to go home! Why am I here?".
See my previous post:
However, a person with dementia may ask to go home for several different reasons and what worked yesterday or even five minutes ago with Mrs. Smith, may not work now.
Maybe today she believes she is a much younger version of herself and she is remembering a more simpler time; a childhood home with mom and dad.
This was a place she felt safe.
Perhaps she isnt feeling safe in the space she is in right now. If she woke up feeling lonely, sad or afraid, home may represent a place where she felt happy and loved.
Maybe she is hungry and can't find the food or she has to go to the bathroom but has no idea how to get there. This unfamiliar place, is not home.
Empathy and compassion are a must in all situations. Along with that; knowledge. Knowledge is key. The more you know the better you will be.
So how do we learn? How do we know the right thing to say with this resident or that?
Take the time to learn about them. Join them in their reality. Listen to them, really listen, ask questions, engage.
Mrs. Smith, what does your home look like? Who lives there with you? Do you live on a farm or in the city? A farm?! Do you have animals? Oh wow, that's so neat that you have cows on your farm. Do you get up early and milk them every day? No, your husband does that. I see. So you get up every morning to make him breakfast? What time is that? It must be early!
In this exchange you are learning so much about Mrs. Smith. Things you can use now and later to better provide the care that she needs.
You are also using this conversation to redirect.
Redirecting behavior is a technique that involves changing a person's focus from an undesirable behavior to a more positive one.
This will be a much used skill in your interactions with dementia residents.
Sometimes the family will come in with some wonderfully calming ideas of their own. Use these. The family knows your resident best. Do not let your pride get in the way and think you know better. I have gotten some of my best calming techniques from a resident's family.
Some families will place their loved ones favorite books around the room or their old journals, maybe even notes from family and friends. Seeing something in print can sometimes resonate better than a verbal cue if your resident is still able to read and comprehend.
Some families place one or two extremely special items from mom or dad's home in their room. This may be enough to trigger a fond memory and provide the safety they need in that moment. Maybe it's their favorite chair, a lamp they used to read by, a picture that hung over their bed, or their favorite blanket.
If it provides comfort and it fits, bring it along.
Some families fill their loved one's room with pictures. Pictures of family, friends and pets. Maybe your resident just needs to see a picture of their favorite dog and they will perk right up.
As always, watch for signs that what you are doing is helping and not causing more distress. If showing him a picture of his old hunting dog, Gus, makes him more intent on getting out of here and doing what he loves, you must switch gears and try something else.
Dementia is forever changing, you gotta' roll with it.
If you are caring for a family member or loved one in your home, redirecting and calming all falls to you.
Being that you've come into this for the love of another and not by profession of choice, you may find yourself feeling like you are flying by the seat of your pants most days.
If you are able, find yourself a village. Just as they say, raising a child takes a village, caring for someone with dementia is the same way.
If you are alone on this journey you can begin by calling the Alzheimer’s Association. They are the experts on all things dementia and they are there to help.
If you are in the US, you can always call the Alzheimer’s Association 24/7 Helpline (1-800-272-3900) to vent, get advice, & resources.
There are also some wonderful learning tools on YouTube. Teepa Snow is one of the top dementia educators in the country and my personal favorite. Look her up as often as you can.
The more you know, the more tools you have to pull from.
When your loved one tells you they want to go home, the principles don't change.
Your goal is still to jump into their reality and try to sit with them where they are.
See previous post:
You will still want to provide person centered care.
This may be easier in the fact that you know your loved one better than a care worker at a facility, but this may also be harder, emotionally. Having to jump into a time where mom is 23 and wanting to go back to her first apartment because that is the first time she felt safe, may mean that you were not in the picture yet. Even though mom's heart does not forget how it feels in the presence of a loved one, she may not recognize your face.
Please see previous post:
Doing what mom needs in this moment can be a real attack on your heart. You need to try to take care of yourself as well. Many caregivers forget that part or simply run out of time and energy to care for themselves. This is why your support group, your village, is so very important.
In addition to mom or dad's emotional well being, you may also have the added task of trying to keep them physically safe during this stage of the disease.
If they are headed out the door every other minute to try and get back "home". This can be very scary. It is also physically exhausting; both for you and for them.
Door alarms, bed alarms and cameras are available to help in these situations. Each family I have spoken with has used different devices and ideas to keep their loved ones safe and well under these circumstances.
Connecting with a Dementia Caregiver group on Facebook or in person may be another good resource. Just remember that, just as the writer of this blog is not an expert, those folks are not either, so take all advice with a grain of salt. If you are unsure, run it by the experts at the Alzheimer’s Association and/or your loved ones physician.
Many times safety is a key reason a family member chooses to place their loved one in a facility.
No matter what the setting, a facility or in your home, try to put yourself in the person with dementia's shoes whenever possible.
Try to think about how you would feel if you were lost, scared and alone in a whole new country and all you wanted to do was go home.
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