Caregiving with Love and Joy: An Expert's Guide to Providing the Best Alzheimer's Disease and Dementia Home Care - Softcover

Boswell, Patricia A.

Softcover

ISBN 10: 0593330692 ISBN 13: 9780593330692

Verlag: Penguin Publishing Group, 2022

Inhaltsangabe

A revolutionary, practical, uplifting guide for the caregivers of people with Alzheimer’s disease and dementia.


When it comes to caring for a loved one with Alzheimer’s disease or dementia, the right caregiving can make all the difference. Here, Patricia Boswell shares structured routines, life hacks, and best practices that are evidence-based and focused on maintaining the highest possible quality of life for the entire family.

As a nurse and dementia expert, Boswell knows that the best caregivers think like a problem-solver, addressing physical and emotional issues as they come up. Whether readers are providing the care themselves, managing a caregiver, or sharing the responsibilities, this book presents the most effective tips, tricks, and small changes that can reduce stress and make life easier. This comprehensive guidebook will redefine the caregiving experience as one that can be life-affirming and enjoyable. It offers a singular resource for anyone who is looking to provide or manage outstanding daily care while maintaining—and even enhancing—their own health and mental well-being.

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Über die Autorin bzw. den Autor

Patricia Boswell is a licensed practical nurse (LPN) who has worked in home healthcare settings as well as in private duty nursing, hospice, group homes, and senior living centers. She is a certified dementia practitioner from the National Council of Certified Dementia Practitioners, and holds a certification Aging-in-Place Specialist designation from the National Association of Home Builders. Boswell is actively involved with the Alzheimer’s Association, where she is part of the advocacy and diversity outreach team for the national organization.

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Is This Behavior Normal? Accepting the New Reality

About twenty years ago I noticed that one of my neighbors, Kendra, was writing names and phone numbers on pieces of paper and taping them to the back of her bedroom door. I remember thinking at the time that it was odd, but it wasn't odd enough to bring it to the attention of her daughter and my friend, Alicia. Even though I am a nurse, I figured that those Post-it notes were her business, and I shouldn't get involved.

Two to three months later, though, it became clear that Kendra was changing. She was forgetful, repeating conversations, and making critical mistakes in the kitchen where she used to have total domination. Once, when we had stopped by for a visit, I noticed that she had left the water running in the sink. Another time I found a burnt and ruined teapot in the garbage can. She would shrug off these behaviors when I pointed them out, and frankly, I didn't want to get into a fight. The last straw was when she put a rug in the oven and almost set fire to the house. At that point it didn't take a nursing degree to see that this woman had dementia.

After what we have come to call "the rug incident," I told Alicia that it would be in her best interest to hold a family meeting with her relatives to figure out a plan. Yet they never did it. Why? Alicia and her siblings were in denial. They couldn't come to terms with the idea that their mother was less than perfectly healthy. They couldn't separate the reality of what was happening right in front of their eyes with their own life and their old familial roles. So even though my neighbor was clearly exhibiting the signs and symptoms of dementia, her children couldn't or didn't want to accept what they were seeing. Their reasoning was that "Mom's just getting old."

Luckily, I knew better, and within a week I was able to put in place a strategy for getting Kendra the coverage she needed and keeping her in her home. I made sure she knew that we knew her mental health was failing, and that we would work together to go forward successfully. Once we implemented a plan, she was able to relax knowing that her family supported her.

Kendra lived for another twenty years, in her own home, before she passed away. Those years were challenging and beautiful. Her family learned to work like a team, for her sake as well as theirs, since they shared the responsibility of being her caregiver. Today they would tell anyone who asked that the hardest work involved moving out of denial.

Denial Is Safe

Maybe you bought this book because you have a concern, a gut feeling that something is going on with someone you love. It could be your parent, spouse, close friend, or relative. It may even be your adult child. Just taking this one step and buying this book means that you are already coming out of denial. Denial is when a person is faced with a fact that is too uncomfortable to accept, and so they reject the fact, even in the face of overwhelming evidence. When it comes to dementia, your Loved One (let's refer to this person as LO for short) may be in denial, because they are ashamed of how they are changing. The family may be in denial because they are afraid of the vulnerability this disease brings up. Denial is also influenced by what the diagnosis would mean to the whole family: an upheaval in everyone's life. You may be heartbroken when you see your LO struggling, which causes denial to look a lot like grief.

There are lots of reasons why denial and dementia are so closely tied together. Dementia is a sneaky, insidious disease. The symptoms come along so slowly that you may not notice them in real time, even if you're living with the person. And if you live far away from your LO and only see them from time to time, they may be hiding their symptoms or may have developed compensating behaviors. That's why my neighbor had all those Post-it notes: she knew that she was having a hard time remembering phone numbers, but she didn't want anyone else to know.

It's only when the compensation strategies no longer work that you may notice odd behaviors, and at this point another type of denial sets in. By this time, the excuses come fast. Some people don't want to see their LO not feeling well. I've heard too many times, "Mom's just getting old." I also know that lots of people get old and don't get dementia.

Denial is also influenced by the relationship someone has with the person they will have to care for. For instance, if you are harboring anger toward your parent, your denial may feel different than that of someone who has a strong attachment or closeness. Denial with anger may cause you to act out, or yell when they do something out of the ordinary (like deciding to dry a rug in the oven). If you find that you're getting agitated because your LO just asked the same question three times in a row, ask yourself why are you so angry.

Seeing your LO acting out of character may also bring up feelings of guilt, especially if you are in denial. Or you may have guilt that your relationship isn't as strong or as healthy as you want it to be. It's okay to feel guilty; we all do from time to time. It's not okay to let your guilt keep you from taking the next step. When you flip feelings of guilt into real concern, you move out of stagnancy and into a more proactive mindset. And proactive is the place you need to be.

Denial also comes from confusion when you are feeling overwhelmed or lost. This is not surprising for a first-time caregiver; you can't imagine the changes that are to come or what exactly you will need to do. You may feel like you are in shock now, yet when you look back, the dementia signs were there all along. Luckily, I'm here to help ease this confusion. You will be able to count on the knowledge I've gained from experience as you move forward in your new role.

No matter how you feel about your LO, the sooner you get past denial, the better. It not only alleviates wasted time in terms of providing better care, it gives you more time to come up with strategies that work for you. The time you are going to spend caregiving is time you cannot ever get back. The good news is that once everyone is out of denial, a family can move toward acceptance, and with that comes relief. Best of all, that mindset comes with better health outcomes for your LO, and a better caregiving experience for you.

The Signs and Symptoms of Dementia: Exactly What Am I Looking For?

The single thing that's going to get you and your family out of denial is understanding the behaviors that you're seeing. We all experience memory lapses: forgetting a friend's name during a conversation, or walking into a room and wondering why you are there. These blips may be caused by anxiety, a bad night's sleep (or a few in a row), illness, a new medication, poor diet, or dealing with physical pain. When you notice that someone's memory lapses interfere with their ability to get through the day, or continue for days at a time, it's possibly a greater problem.

I tell the families of my patients that dementia isn't when you can't find your keys. It's forgetting what keys are for. Before we get into the signs of dementia, here's a list of what it is, and what it is not:

Dementia is . . .
- Consistently poor judgment and decision-making 
- Inability to manage a budget, overspending, or consistent financial errors
- Losing track of the date or the season
- Difficulty participating in a conversation
- Finding objects in inappropriate places, like finding knives in the freezer
- Getting lost in a familiar place
- Wearing two different shoes, or wearing shoes on the wrong foot

Dementia is not . . .
 
- Making a bad decision once in a while
- Missing a single monthly payment
- Forgetting which day it is, but remembering it later
-...

Details zur Ausgabe

• Verlag: Penguin Publishing Group
• Erscheinungsdatum: 2022
• Sprache: Englisch
• ISBN 10: 0593330692
• ISBN 13: 9780593330692
• Einband: Taschenbuch
• Anzahl der Seiten: 304
• Kontakt zum Hersteller: Nicht verfügbar
• Verantwortliche Person: GS1 Slovakia; https://www.gs1sk.org; ; Nantersk� 23; Žilina; 010 08; Slowakei