I just finished reading your incredible book! Best book I have read on Alzheimer's and Dementia.
I wish I would have read it when I was caring for my mom who had Alzheimer's for 10 years. We did have many moments of joy but also many of frustration and sadness.
Love, love your approach and practical methods to manage situations and respond to questions.
Congratulations to you for writing such a dignified, respectable, gracious, and loving, gift in this book. I am certain many moments of anguish, fear, frustration and pain, will be replaced by Joy because of you.
This blessed me and my day today!
The best to you!
“His friends don't visit anymore...”
People stop visiting because they don't know HOW. They come over and chat like they normally would, “What did you do this morning?” “What did you have for lunch?” “Remember last Friday when we went out to eat…” Then the person with dementia asks the same question they ask 50 times a day, “Where is my wife?” Response, “Your wife is no longer living she passed away last June.” Tears, anger, despair, confusion, complete shut down.
Because of the short-term memory loss the person cannot remember what they had for lunch, when they went out to eat, that their wife passed away. The greatest gift we can give the person with dementia and anyone who visits is a list of 20 ways to “be” together.
Bring a can of Budlight, John will like you instantly.
Talk about golfing, he still knows a lot about the game.
Avoid questions that require him to remember like, “Your son came to see you last night. Did you have a good visit?” Instead just give him your memory, “I saw your boy. He sure is smart and a great golfer.”
If John asks about his wife simply say, “She is getting her hair done.”
Bring anything fresh from the garden to nibble on.
When he repeats himself, act like you just heard the story.
When you don't understand John, act like you do and respond generally with, “Wow, I didn't know that.” “That's interesting.”
When people know HOW to visit, they will visit. Xerox copy your list and give it to EVERYONE!!!!
“Why did you
leave me here?”
So often when family visit they get vomited on. “Get me out of here you *%!@. You just want my money.” If they know who you are they will blame you for everything.
Here is a less threatening way to help you understand. I have a 13 year old daughter. The teachers tell me how delightful she is, what a helpful student she is, a pleasure to have in class. I don't know who they are talking about because when she gets home from school, I get vomited on. “You don't let me do anything!” “You are ruining my life.” Another mom explained to me this is because she feels safe with me. Aghhhhhhh.
You might want to apologize to staff for the way your parent or spouse is acting, but consider, they are treating other people completely different then they treat you. Even when they have their moments, now worries, staff is used to these reactions. Your mother is definitely not the first person to “tell them off”. When a person with dementia is feeling something, thinking something, it comes right out their mouth. There is no longer a filter. Avoid taking these reactions personally, it is the disease.
“I am here to
take care of you.”
People with dementia believe they are perfectly fine. They don't remember that they don't remember. Have their daughter introduce the caregiver as a “friend”. Find out what they LOVE: their teapot collection, their car, their flower garden, their favorite food/dessert. When you focus on what they love, they are more likely to LIKE you. If they like you, they might invite you to stay for coffee or teach you what they know a lot about.
Then give them a reason why you need to stay a bit longer, “My husband will be here at 6, may I stay till then?” (your car is parked around the corner)
High school /college students might be the best caregivers because they like, “young people” and young people are less likely to tell them what to do. They can give “young people” chores to earn money for school. WIN/WIN
“No one believes there is anything wrong.”
A person with dementia can act perfectly fine for short visits, or when your little brother calls on the phone, or even at doctors apt. Physically they look perfectly healthy. How do you think that makes the caregiver feel when others are questioning the decisions she is making or insinuating that she is blowing it out of proportion?
Resentful… because she is doing all the work without support. Angry, alone, or that she is the one going CRAZY. Whoever doesn't believe there is anything wrong, I suggest you invite them to come stay for a while, and you go on vacation. It will take three days, 24 hours, and they will call you on the phone telling you to get back home. Not until they experience, first hand, what you have been experiencing will they believe you.
The person who is doing the caregiving holds the truth and we, on the outside looking in, need to support their decisions. There is an exception… when we see the caregiver's health deteriorating and ask, “How is it going?” their response, “I'm fine.” Fine is not an emotion. Honestly observe how the caregiver is doing. We do not want to lose two people to this disease.
Enhanced Activities: Shoebox
When we are cranky and yell at our kids or have an attitude toward the people we love, it's amazing when a neighbor stops by or a friend calls on the phone, we shift immediately. “Well hello. How are you?” in our pleasant voice.
Well this too works for a person with dementia who is obsessed about doing something, going somewhere, accusing you of stealing something or just plain cranky. Have someone call on the phone or stop by, it will shift their mood immediately.
You can also pretend your stomach hurts or you have a headache, their mother mode will kick in, “Oh honey, you better lie down.” It gets them out of “the spin”.
“They are your teacher”
Your siblings, neighbors, friends, management, co-workers are not your teachers when figuring out what will work and what won't work. Classic line, “That won't work.” “No we better not, what if…” Your head isn't your teacher. Try it…keep doing something different until you get a better response. Look at their face, your experience in that moment will teach you.
Short-term memory loss is a blessing because when you make a mistake you get a do-over in a few minutes. Mistakes teach you what not to do. Be gentle with yourself. In EVERY MOMENT you are doing the best you know how.
What are their favorites? Favorite drink? Favorite temperature of room? Favorite snack? Favorite ice cream? Favorite sweater? Favorite place to sit? Favorite person? Favorite tease? Favorite blanket? Favorite place to visit? Favorite subject to talk about? Favorite music?
When you find ANYTHING that causes a positive reaction, write it down and share it with everyone! Avoid writing general statements like, ”My mom loves to talk about her brother.“ Write down specific statements such as, ”You have an older brother named Richard. Richard was smarter than the rest. Wasn't he? He walked you to school everyday.“ Mail this list out to family and friends. It will help tremendously when they visit the person with dementia.
Read more about “Creating Moments of Joy” by clicking here...
Not to Caregive”
Look closely at your intention when deciding whether or not to take care of someone. Are you caregiving out of obligation, guilt, because you made a promise or from a place of love and desire to be a part of this journey.
Caregiving from “shoulds” or obligation, may result in resentment, anger, fear, which may cause YOU health problems. You promised “till death do we part”. Recognize you made a promise to be their husband or their wife. By allowing someone else to be their caregiver you get to become that person that simply holds their hand and loves them.
If caregiving is taking a toll on your health or the well-being for your own family, let go and allow another solution to appear. If you still hold pain from being abused as a child or as a spouse, there is too much history. Know that a complete stranger won't have expectations or stories that interfere with giving care.
Pause…look inside honestly…the answer resides in the quiet pause. Honor the answer you hear.
“What stage are they in?”
So often we want to figure something out because Knowledge gives us an illusion of security. We think, if I take the person to a doctor and find out what it is and what will happen next, then it will be better. When in reality, for the person with dementia, going to the doctor simple increases their stress level, which in turn causes more confusion in that moment.
Knowing something doesn't change it. With dementia, it changes every day, so what you know today quite possibly will be irrelevant tomorrow. All we have is this moment right now. To try and figure out this disease is the insanity. Every person goes thru this journey differently. The only thing predictable is that it is unpredictable.
What is there then? The Now. Look at the person's face right now and you can tell without words what they feel. Wait… in a few moments what they feel will be different. Let go of trying to figure it out and use that energy to create a moment of joy for yourself instead.
Family Moments: Where's My Room?
“When is it time to get help?”
- The caregiver/spouse is having health problems and declining physically.
- Person with dementia walks out their front door goes a couple of blocks and doesn't know how to get back home.
- Not eating well or drinking water-- Malnutrition and dehydration escalate dementia symptoms.
- Financially being taken advantage of in any way.
Realize the person is never going to say, “Hey, I am ready to move.” So often we wait to get permission, and that just isn't going to happen. With any move, remember it is going to take time to adjust.
Consider they are HERE to teach us how to LIVE. If they cannot remember what they did five minutes ago and what they are going to do in five minutes. Where are they living? In the NOW.
If they feel angry, scared, sad, tired, lonely....can they hide it, stuff it, change it, twist it like we cognitive people can and say, “I'm fine.” Everything they feel is real and authentic. We get the opportunity to respond to an authentic emotion.
They cannot tell a lie. What they are thinking will come right out their mouth. We, cognitive people, think things but we know better than to say them out loud. So when they say something to you, you might want to consider it. Maybe they see something, feel something you cannot see or are not willing to look at.