Care & Share

Welcome to our Care & Share blog! This blog features care advice for caregivers, family members, and friends of those with dementia. We also have information on caring for caregivers. If there’s a topic you would like to see addressed, please let us know! You can give us a call at 901.854.1200 or email our Program Director, Sheri Wammack at sheri@pagerobbins.org.

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  • June 19, 2018

    Long-Distance Caregiving

    Caring for a loved one from a distance has its own struggles. If no other family lives near your aging parents, how do you ensure someone is looking out for them? If another family member is caring for your loved one with memory loss, how do you help?

    You may feel helpless, but you are not helpless. We’ve got your back and an action plan! These are our tips for long-distance caregivers. If you have questions that aren’t addressed here or just need a listening ear, give us a call at 901.854.1200.

    For ALL long-distance family:

    • Call your loved one on a regular basis. Even if conversation is repetitive and/or doesn’t make sense to you, the connection is important. Keep in mind that Facetime or Skype might confusing for someone with cognitive impairment.
    • Send cards, notes, and photos. A physical piece of mail can give joy over and over again.
    • Plan your visits to make the most of your time together. Make time for errands AND quality time. Get the household tasks completed and schedule appointment when you can be there.
    • Gather information and resources. Take time to learn about your loved one’s condition, so you can help anticipate needs. Make a list of support in the area, such as friends and church members who can assist when something comes up and you cannot be there.

    If other family does not live locally with your loved one:

    • Find a geriatric care manager. He/she can be your eyes and ears when you cannot be there. A care manager can accompany your loved one to appointments, report to you about your loved one’s condition and provide a host of other services.
    • Plan ahead. When you are in town, prepare for the future. You never know when circumstances will change for your loved one. Interview in-home care agencies early, tour residential facilities, etc. When crises arise, you will have a plan in place.
    • Complete medical information releases, so you can have contact with your loved one’s physicians as needed.

    If another family member who lives locally is providing primary care:

    • Thank the primary caregiver. Call, tell him/her in person, send a note. When you are far, one of the best ways you can care for your loved one is by making sure the primary caregiver is emotionally supported.
    • Listen to the primary caregiver. Resist the urge to constantly interject what you would do in the situation. It is hard for the primary caregiver to constantly hear how he/she could be doing things “better” or differently. Don’t make their days more difficult. It is important to just listen.
    • Believe the primary caregiver when he/she tells you what is going on. You may think: Mom would never do that. But those with dementia usually do things in front of the person closest to them that they wouldn’t do in front of anyone else.
    • Give the primary caregiver a break. Plan ahead for visits and allow the primary caregiver to check out for some time (a few hours, overnight, a week).

    Found this helpful and want to learn more? Check out this resource page from The Alzheimer’s Association.

    May 25, 2018

    Caregiving Mythbusters

    There are many myths related to dementia and caregiving. And believing them isn’t doing you or anyone any favors, so let’s bust some myths.

    Myth: I can handle everything myself. I don’t need any help.
    Reality: You will need help. Don’t be afraid to ask for it.

    Caregiving is physically and emotionally hard. You will need help. You will need other people to give you a break. You will need someone to listen to your worries. You will need advice. You may need physical assistance in caregiving. Do not try to care for your loved one alone. Find people you can trust and lean on them for support.

    Myth: It’s like caring for a child. I have become the parent.
    Reality: It is different than caring for a child because your loved one is an adult.

    There are some similarities between caring for a child and a loved one with dementia, but there are also glaring differences. When you parent a child, the expectation is that the child will mess up but learn along the way. You train them to become more independent, so one day they will become a productive member of society. When you are caring for a loved one with dementia, your loved one will not get more independent. Tomorrow, your loved one will need more help than he/she does today.

    You need to give your loved one the respect and dignity of being treated like an adult. Your mom is still your mom but with cognitive impairment. Your husband is still your husband but with a neurodegenerative disease. Preserve and honor that relationship. You are providing care, not parenting.

    Myth: I am a bad caregiver if I use in-home care, day programs, or residential care.
    Reality: When you seek outside care options, you are still a great caregiver.

    Many caregivers feel deep guilt when deciding to use alternate care for their loved ones. Caregivers can feel selfish for wanting time to themselves or guilty for not being able to carry on at a certain pace. Reaching out for assistance is an act of strength and not an act of weakness.

    Choosing to use in-home, residential, or adult day services does not mean you have failed at caregiving. You are still the caregiver; you are just allowing others to assist. No one gives surgeons a guilt trip for asking surgical nurses for assistance. That is the nurse’s job. They are there to help surgeons be successful.

    The same is true for caregivers. Having assistance from another care provider doesn’t mean you are weak or a bad caregiver but that your loved one needs more care than one person can provide.

    Myth: Now that my loved one has dementia, the good days are over.
    Reality: There can still be many good days when your loved one has dementia.

    Yes, the disease process is full of challenges for everyone. But there can still be good days, and there can still be joy even though life has changed. The trick is to LIVE IN THE MOMENT. Don’t get too hung up on the little things that don’t matter: The laundry didn’t get done today. My husband put the cereal in the fridge instead of the pantry. Mom said something embarrassing to the waitress.

    Learn to laugh with your loved one. Learn to enjoy just being together. Learn to talk about bygone days and share and listen to stories (even if they aren’t always truthful). Cherish the now. (And if you still doubt there can be good days, come see us at Page Robbins. We’re certain we can make you feel differently.)

    Myth: Planning for end-of-life decisions hastens death. If I don’t talk about it, it won’t happen.
    Reality: Planning ahead gives you peace of mind and a road map for the future.

    Planning ahead does not hasten death or illness. Instead, it gives you peace of mind to know that decisions are made and finances are planned. It can save you from having to make difficult medical decisions in a crisis. Planning ahead allows you stop worrying about the future and focus on the day-to-day.

    Myth: Everyone with dementia is aggressive, depressed, agitated, inappropriate, etc.
    Reality: No two people with dementia are exactly the same.

    There’s a saying that goes: “If you have seen 1 person with dementia, you have seen 1 person with dementia.” There are stages and patterns of behavior in dementia, but everyone’s journey is going to be different. Some may wander and have hallucinations, and others may never exhibit those behaviors. Some may have trouble sleeping and a poor appetite, and others may never have those struggles. Each person’s dementia process will be unique.

    Myth: My loved one is the only one that (insert embarrassing behavior).
    Reality: You can’t shock us, so please ask your embarrassing questions.

    Families rarely share something that truly shocks us. If you have questions that you’re embarrassed to ask or situations that you feel awkward talking about, please share them with us. Families often shy away from discussing certain topics with physicians or care professionals because they are ashamed of their loved one’s behavior. Don’t hold back! We don’t judge and neither will others. Don’t let fear of embarrassment hold you back from getting the answers and help you need.

    April 26, 2018

    Planning Ahead

    One of the struggles we often hear from caregivers is that it is so hard to plan. It is hard to plan for what life will be like in a year, 6 months, or even next week. Dementia is unpredictable. Things can be fine and suddenly your loved one has a major decline and doesn’t bounce back like he/she always has. Or things are okay with your loved one, but you have a health scare and can’t assist with daily tasks.

    It’s easy to get bogged down in the day-to-day grind, but it is necessary to plan now while you aren’t in crisis mode. Plan now, educate yourself now, make decisions now, so when something happens, you have a path to follow.

    No matter the stage of dementia your loved one is in, things will change. Notice we didn’t say things MIGHT change. Things WILL change. Your loved one’s abilities and needs will change. When? No one knows. It might be tomorrow, next week, 3 months down the road, or a year. But plan NOW for those things. Even if it seems hard, it will be much harder if you haven’t planned at all.

    Some things to consider and get you thinking:

    • If your loved one is currently staying at home with you and does not need much assistance, what will you do when he/she needs assistance? Look into a day program, memory care, or in-home care NOW.
    • If your loved one is currently attending a day program, what will you do when that program is no longer appropriate for him/her? Look at in-home care, memory care, or nursing home options NOW.
    • Do you want your loved one to be considered Do Not Resuscitate Status?
    • How long will money last at this current rate of spending?
    • How will we afford to pay for the next level of care?

    Planning ahead takes “the fear factor” out of making a decision. If you wait until a crisis to start planning, you won’t know how to react, and the situation will be much more stressful. It is not morbid to plan: it is smart. Make a list of in-home care agencies – rate, staff, schedules. Figure out what nursing home care is available – Where are they located? What will it cost? Do staff answer your calls? What is the facility like when you stop by for a visit?

    Talk to the experts. Do you have legal or financial questions? Find an elder law attorney. Geriatric Care managers are great resources for a wide array of questions related to placement, behavioral concerns, resources, etc. Also, be sure your loved one has a general practitioner who is well-versed in working with seniors and/or a good neurologist.

    By touring facilities, interviewing agencies, and gathering information NOW, you empower yourself with knowledge and choices. You allow yourself the opportunity to make the best decision possible for you and for your loved one. Your future self will thank you.

    If you have questions about care for your loved one, if you’re wondering what to expect, or if you are looking for resources, please come talk to us. We want to empower you with resources, information, and support: sheri@pagerobbins.org or 901.854.1200.

    April 4, 2018

    Caregiver Hacks

    Life is hard. The struggle is real… am I right?! It is difficult is to get everything done. Add in caring for someone with dementia, and life just gets more complicated and stressful. But thankfully, there are shortcuts that can lighten the load. You don’t have to do things the way you’ve always done them. Shortcuts are your friend! Here are some hacks to make everyday tasks easier for you and your loved one:

    Groceries

    You could get someone to stay with your loved one while you run to the store, but finding someone once a week may be difficult. You could also bring your loved one with you to the store, but your loved one may wander off, pocket items, or talk to everyone you pass, turning a 30-minute trip into a 2-hour extravaganza.

    Instead, try Kroger Click List, Walmart Pick Up, or any comparable service. These services may seem intimidating, but they’re simple once you get the hang of it. Here’s how you do it:

    1. Log on to the website, and create an account.
    2. Fill up your shopping basket.
    3. Pick a time and location for pick-up (usually the next day).
    4. When it’s time for pick-up, park in a designated spot, and employees will bring your groceries out and load them.

    You can be done in under 10 minutes – it’s a miracle! Put your order in at night in the comfort of your pajamas, so you can think through your purchases and check cabinets as you make your list. Then, on your way home from work or church, pick up your items. No more wandering aimlessly through the store trying to find what you need.

    Household Supplies

    The supplies you can’t get from Walmart Pick Up, you can have shipped to your home through Amazon.com (extra points if you shop Amazon Smile, and choose Page Robbins as your charity!): disposable products, cleaning solutions, pet food, etc. They might even be cheaper than they would be in-store.

    Putting Dinner on the Table

    Homemade meals are time-consuming, but constantly going out to eat can be expensive and tiresome. For a nutritious homemade meal, check out a prepared meal provider. Some local examples are Curbside Casserole and Katie’s Kitchen.

    Clothing

    Hang outfits together to make choosing what to wear easier. Put a top, bottom, and sweater together on a hanger.

    Medical Information

    Keep a binder with dividers for important information for your loved one AND you. Use one section for a list of medications (reason, dose, timing, etc.), allergies, and doctor contact information. Use one section to list concerns – changes in behavior, etc. And use another section for important papers (like Power of Attorney) that you may need. Take this with you when you go to any appointment, so you’ll have that information on hand and can remember questions to ask. As things change, be sure to update the binder.

    Medication

    Use your smart phone to set alarms for times your loved one needs medication. Let you phone help you take the stress out of trying to remember.

    Nighttime

    If your loved one is having nighttime incontinence that is requiring you to remake the bed several times each night, layer fitted sheets and disposable pads. Put a waterproof pad then fitted sheet, and repeat the process a few times. During the night, you need only remove the top layer of sheet/pad instead of remaking the whole bed in the middle of the night.

    If your loved one is taking trips to the restroom in the middle of the night, navigating a dark house can be very dangerous. Motion activated night lights can help your loved one see and better navigate the space.

    We also found this Care Connection list of hacks super helpful.

    February 27, 2018

    The Importance of Touch

    Have you ever considered the importance of touch in your daily life?

    I love the feeling of my 8-year-old son jumping into my arms, his arms wrapped around my neck for a giant hug first thing in the morning. I love when my 11-year-old daughter, who is now as tall as I am, puts her phone down and leans in for a real hug. I enjoy when my husband puts his hand on my back as he passes me in the kitchen or how he kisses me before he leaves for work. Touch is important to all of us. We need physical contact.

    What about for you? What hugs and moments of affection do you treasure?

    Now, think about the loved one you care for. What type of touch does he or she receive each day?

    Mom is touched when you give her medication and assist with toileting. Your spouse is touched when you help him put on his shirt and when you redirect him to walk a certain way. These touches are different. They are task-oriented. They aren’t about affection. It’s about getting something done.

    The need for loving touch does not go away when someone has dementia. And just because someone can’t communicate his or her need for physical affection doesn’t mean it’s needed any less. Touch is important from our earliest development till the very end of our lives.

    Let us not get so caught up in our to-do lists that we forget to provide the physical affection our loved ones need. Touch can communicate when words can’t. It can convey love, support, encouragement, and understanding. Touch can calm nerves and comfort those who are distressed.

    My challenge to you: Take some time each day to put the to-do list aside. Let your busy bee fly. Give your loved one a real hug or a pat on the shoulder. Hold his or her hand as you tell stories. Embrace the moment, for these are the times you will treasure.

    Our activities director once told me: “You can’t give a hug without receiving a hug.” So true.

    A virtual hug from us to you. Now, pass it along!

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