Life is living when it is shared-or how to win at caregiving
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You know the feeling. Something different happens. The normal day to day events are interrupted by some novel event. Like if there is a squirrel at the window. A squirrel looking into the house like he locked his keys inside. You see this. I imagine your first thought is to look around and see if anyone else has noticed this weird squirrel. Saying, “Do you see this?” seems to be the most natural thing at that moment. We need to share things. What we think, want, and don’t want. It’s a need so deep you might not even know it is there, like breathing. This doesn’t change after a diagnosis of dementia. Everyone wants to have this feeling, “if I am not there then I will be missed.” If you can provide that, “you are needed” feeling to a person living with dementia then you have done it. You win at caregiving….
Person-Centered Care
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- Tagged: person-centered care
One day, I was trying to leave the house to teach a class on Person Centered care. I was already late. My Mom who was living with Alzheimer’s, and my (then) 5-year-old were deep into a game of War (4 packs of cards-serious game). I kissed each on the cheek to say “bye”. My daughter asked, “Where are you going?” “To teach a class,” I said. “About what?” asked Mom. I quickly explained what Person-Centered Care is. Too many words, I thought. I probably went too deep for her. My Mom looked confused, “Isn’t that just: Do unto others as you would have them do unto you?” My daughter said, “You mean you have to teach people to be nice to each other?” “That’s basically what it is.” I told them. On my way out, I heard Mom say “WAR!” as I closed the door behind me. Drawing by 5-year-old Grace of her and Grandma playing War at the dining room table….
Tagged in: person-centered care
Overall Tips on “Behaviors”
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- Tagged: actions and reactions, behaviors, inappropriate, manage
The word behavior in dementia care or even healthcare has gotten a bad rap. We tend to only think of the negative and not the positive. I use actions and reactions, since many “behaviors” are just reactions to our actions. If we get upset at our computer or we’re cranky at 4pm or maybe frustrated at a co-worker for not finishing their side of your project; no one says, “Geez Pam sure has some behaviors today.” We are reacting normal for the situation that we are in….
Sharing A Home – Preparing For When Family Moves In
“Son, We’re Moving In!” Alzheimer’s disease. Stroke. Financial incident. Car accident. Surgery. Loneliness. Heart attack. There are many reasons you might move in with your parents or in-laws, or why they may move in with you. It is not a simple choice and there are some things everyone should consider. First about me and my experience with sharing a home. We moved with my mom from Wisconsin to North Carolina because of her Alzheimer’s disease. We took care of her for 11 years. It’s been four years since she passed away. Recently my in-laws have moved in with us because rents just keep climbing, and they had to. There was no question that they would move in with us. We have the space. It is close to their old place, so it is familiar and their friends are close by. But one major factor for you may be whether you move in with them or they move in with you. A few questions for you to ponder are: • Which home has more room? • Which home has a space for all family members to feel they have their own private spot? • Is one of the homes all on one floor? • Are their safety precautions already in place at one home over another? • Will one home be easier to put in a ramp, get a wheelchair through doorways, or walk-in shower over the other home? A person may not need any of these aids right now, but could need them in the future. • Does one home have a lower mortgage or no mortgage? Relationship If you do not have a good relationship with your parents, do not move in together. I get thinking your mom can babysit your kids, or maybe they have money and you could use the financial help. I understand you think they don’t have any options. But nothing will make you have a good relationship if you do not have one before you live together. It doesn’t need to be great, just good enough. Home Rules Do you have any house rules? You may have some, and you don’t realize it. Like, shoes off in the entryway, or no smoking in the house. It may help everyone who lives in your home to know what they think the rules are. Sit down and write some home rules, together. Think about how to make them happen. Be prepared to explain the reason behind the rule. If you want everyone to take off their shoes, you may need a bench or chair for older people to change into a pair of secure, comfy slippers. Make a list and let them chime in with any of their ideas for house rules. Write them down. It can be a good time, actually. Boundaries After a few years with Alzheimer’s, mom had no boundaries, really. We were her care partners at first. As the disease progressed, we became her caregivers. We took care of all her…
Tagged in: moving
Ways to Help A Caregiver
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- Tagged: Caregiver, depression, help, offer
Do you know a caregiver? Maybe a neighbor who keeps to themselves? A member of your church who hasn’t been attending because they are nervous about bringing their loved one? A coworker who is struggling? A friend or even a family member? How about paying them a visit? Statistics reveal that between 40% and 70% of family caregivers experience symptoms of depression, which can often be caused by feelings of isolation and loneliness associated with the act of caregiving. Throughout COVID, we have heard about the isolation and loneliness of residents in long-term care communities. Yet there is another group of people who often feel alone and depressed: caregivers. More ideas on how to help: Don’t discount what doing something good for someone else can do for you. Performing acts of kindness decreases feelings of depression, gives you a sense of belonging, lowers your blood pressure, boosts your happiness, and increases self-esteem. The more you do for others, the more you are doing for yourself! April 11, 2024 by Karen Stobbe …
Go With The Flow: Caregiving For Someone With Dementia Might Require A Little Improv.
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- Tagged: flow, go with the flow, improv, laughter
Karen Stobbe’s dad was diagnosed with dementia more than 25 years ago and since that time, she has dedicated her life and skills as a theater professional into training others. “I went to every workshop, conference, and read every book. I wrote a performance about caregiving, then wrote a book, and then created my first training website. It began to feel like I was slowly crossing a river from theater to health care, putting down another stepping stone as I needed to move forward.” After her father died, her mother was diagnosed with dementia, and along with her husband Mondy and her daughter Grace, they cared for her mother for 10 years in their home. “Now Mondy’s parents are moving in with us. So here goes our next adventure,” she says. Can you share a personal experience relating to your methods/training? I use interactive techniques to train. I believe people learn more by doing than by only listening. I also use improv exercises to train all types of caregivers. With my mom, we really practiced the improv guideline of ‘go with the flow’. Basically, in improv ‘go with the flow’ refers to whatever suggestion is thrown at you…go with it. No saying no. No denying the reality the other person has set up on stage. Go with what is happening. Same thing for being with a person living with dementia. My daughter was listening to music, and Mom asked her who was playing. Mom said she knew them. The Beatles. And not just knew them, but dated them. We could have said, “Mom, there is no way you knew the Beatles. And no way you dated any of them.” But why? Who was it hurting that she was saying this? You just go with it and listen to her tell her stories. What do you think is the thing most of us don’t realize about dementia? That there is joy and laughter. That the more we understand how to be better caregivers, the better the experience is for all of us. That they are not trying to give anyone a hard time — they are having a hard time. How do we get past the grief of someone not being who they were? As a person progresses in their dementia, I think the grief we feel as the person loses certain abilities and memories sometimes is grief about ourselves. Our personhood is wrapped into what others see in us, how they treat us, and love us. I know that as a caregiver, I may not have grieved some of the little things that my mom lost the ability to do, but as her daughter I did. And it was like losing little pieces of myself, my memories of who I am. I found my grief was more about me not having my mom to give advice and support in my life. Sure I could talk to her, and most of the time I got a pat on the head and she moved…
Visit A Caregiver, And Sweeten Their Day And Yours
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- Tagged: care partner, Caregiver, visit
How about paying them a visit? Statistics reveal that between 40% and 70% of family caregivers experience symptoms of depression, which can often be caused by feelings of isolation and loneliness associated with the act of caregiving. Throughout COVID, we have heard about the isolation and loneliness of residents in long-term care communities. Yet there is another group of people who often feel alone and depressed: caregivers. No matter what type of caregiver they are, if they are taking care of someone in their home, their life changed dramatically the minute their caregiving began. I have heard the following statements from many caregivers: YOU can help. You can make a difference in someone’s life. I know it may feel awkward, or you might not know what to say or do. But paying a visit will not only be good for the caregiver – giving them a break will make a difference to the person they are caring for, too. Here are some tips for visiting: Please never say these phrases to the full-time caregiver: “Wow, your mom doesn’t seem to be as bad as you say.” “Your mom really has Alzheimer’s? She looks good.” It seems like a nice thing to say, but let’s think about it for a moment. What if there was something that caused you a lot of stress and anxiety, and someone said to you, “You know that thing that is breaking your heart? That seems almost unnoticeable to me!” It’s not a compliment. It just means you haven’t spent enough time in the situation. Also, examine your motivation to say those words. It’s probably coming from a place of nervousness. Dementia is scary, and you feel uncertain about what you are doing. Remember, don’t speak to make yourself feel better: She’s not so bad! She looks normal! Speak to make the caregiver feel better: What can I do that will help you the most?…
Wait a minute! What are YOU laughing at? A lot of stuff is funny. Maladaptive humor hurts. However, adaptive humor helps. Discover your motivation and see if you are the cause of your own problems.
The type of humor you use in caregiving really matters. A noteworthy 2018 study shows that, of the two paths that humor can take only one is useful. Are you relying on pointing out mistakes, asserting authority, and emphasizing compliance with your humor? Well, here’s the thing: it’s counterproductive. However, if your humor reflects values like equality, interdependence, and respect, then you’re on the right track. We get it – maladaptive humor can be quite funny at times. But when it comes to caregiving, it simply isn’t helpful. That’s where adaptive humor comes into play. It has the power to bring people together, reframe challenges, and foster a sense of purpose. And you know what? This can make life a whole lot easier. Having the correct motivation behind your humor is what will show you the way. Why are you going for with this bit of comedy? Who’s mood are you going to lighten? Is it to lift them up or to keep them in their place? Sometimes our frustration at the situation, our own past, or our feelings of inadequacy (about whatever) can motivate us to make maladaptive comedic choices. Notice that. Don’t judge yourself too harshly, just see the choice for what it is: unhelpful. This is the best way to make a better choice in the future. It may take time to break a bad habit of being negative. Being negative is very powerful in most cases. It just doesn’t have any positive power in dementia caregiving. Humor can lead to understanding, support, and connection. Reflect on the kind of humor you bring to caregiving, and see the positive difference positive choices can make….