Tag Archives: Caregiving

The 10 things you must do after getting a dementia diagnosis.

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A walk through the park

It’s a shock to receive a dire prognosis. The day I listened to the doctor tell my husband that he had Alzheimer’s remains as one of those pivotal, earth-shaking moments that changed the course of my family’s life.

I’ve been hearing about more and more people, young and old, who are getting an Alzheimer’s diagnosis. It’s okay to cry, to throw a tantrum, and to feel numb. I remember calling my parents in disbelief and saying that my life wasn’t supposed to turn out this way. I was only 48 years old. I lost my spouse at 58. Now at 71, I look back and see how far I’ve come. Ten years of navigating the Alzheimer’s world, taking care of my husband, having him live in a memory care home, and seeing it through until the end, definitely took a toll on me — physically and emotionally. I still tear up when I think about it.

Whether you are the caregiver or the person who has dementia, the important thing to tell yourself is that you will get through this. But there are things you must do — starting today — to help yourself and your loved one(s).

  • Get in touch with your local Alzheimer’s Association. https://www.alz.org/ They are a godsend and do amazing work helping caregivers and people with dementia, and funding research. Check out their education programs such as “Managing Money: A Caregiver’s Guide to Finances” https://training.alz.org/products/4355/managing-money-a-caregivers-guide-to-finances?_gl=1*ec354i*_ga*MTkxNzM3NzMxOS4xNzAzMDk3NDQ5*_ga_9JTEWVX24V*MTcwMzA5NzQ0OC4xLjEuMTcwMzA5NzU4MS4xOC4wLjA. Or, “Living with Alzheimer’s: For People with Alzheimer’s Disease.”
  • Make an appointment with an elder attorney to figure out how to best plan for the future. (http://National Academy of Elder Law Attorneys). As soon as possible, designate who will be your powers of attorney, including durable general power of attorney and medical power of attorney. Put a lot of thought into it. You want to make sure the people you put your trust in are people you know will have your best interests and wishes in mind.
  • Consult with a professional about long-term care Medicaid to see if you qualify and what you might do to qualify if you currently don’t. Making these plans while you or your loved one are still able to is a great gift.
  • Enlist family members and neighbors who you can count on to be helpful. Designate someone as an emergency contact. Share your contact information with them and let them know you might need their help at some point.
  • Share your feelings with your closest friends and family. Don’t do what I did and try to keep the diagnosis a secret. That became a huge stressor for me.
  • Consider adult daycare programs that provide care, companionship, and supervision during the day. To find out more about centers where you live, contact your local aging information and assistance provider or Area Agency on Aging (AAA). For help connecting to these agencies, contact the Eldercare Locator at 1-800-677-1116 or https://eldercare.acl.gov.
    The National Adult Day Services Association is a good source for general information about adult daycare centers, programs, and associations. Call 1-877-745-1440 or visit http://www.nadsa.org.
  • Schedule a weekly walk with a friend or neighbor. The exercise and socialization will do you good.
  • Remove area rugs from the house and other items that may pose a fall risk. And make sure there is sufficient lighting in the house.
  • Do everything you can to reduce stress. Have a family meeting in which everyone can participate in the sharing of care. It’s important to divvy up tasks because there will be plenty of them in the long, fraught Alzheimer’s journey. Even if someone lives across the country, that person can share the responsibility of calling in prescription drugs, ordering food to be delivered, setting up appointments, etc.
  • Stay engaged in activities that you’ve always enjoyed. Dance, sing in a choir, play an instrument, garden, play a sport or cards. Alzheimer’s and other dementias are not contagious. Enjoy your life the best way you can by staying engaged in your favorite activities for as long as possible.

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

28 ways to practice gratitude and uplift your spirit this Thanksgiving and holiday season

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This will be a different kind of Thanksgiving and holiday season, for sure. It’ll be quiet. It might bring up anxiety about staying healthy or being alone. If you’re at home caring for someone with Alzheimer’s or other dementia, the holidays will be riddled with their typical challenges. If your loved one is in a memory care home, it will be sad because you might not be able to visit. However, this season will also allow us to pause in order to count our blessings and welcome unknown and unseen blessings.

In his book “Upward Spiral,” neuroscientist Alex Korb, M.D. explains that practicing gratitude is one of many pathways to an upward spiral to happiness.

Be grateful. Make a list of things that uplift you and that you’re grateful for. Keep a gratitude book and write about your favorite people and things. A job that you like, a special person, a pet, a warm and safe home, good food, a favorite book or TV show, a park where you walk, your health, a fragrant candle, a neighbor who helps out by shoveling your sidewalk, raking the leaves, or picking up groceries.

Before you get out of bed say an affirmation such as “I’m grateful for my strength and health.” “Today is going to be a good day.” “I have the power to change my attitude.” “I am happy to be alive.”

Write uplifting quotes, blessings, Bible verses, words of wisdom or other religious quotes in a blank book specifically designated as your “happy” book.

If you’ve lost a loved one in the past year, create an alter in your house in remembrance of them. Put up their picture, place a candle on the alter with some incense or food they loved. Be creative. Put on their favorite music. Sit and contemplate all the gifts that person brought to your life.

If you have leftover guilt, pain or regrets about your relationship, have a conversation with that person. Ask for forgiveness and give your forgiveness back. You might shed some tears, but it’ll open your heart to the possibility of healing.

15 ways to connect with your at-home care partner and uplift both of your moods.

  • Put on some music and dance. If your care partner doesn’t walk, hold their hands and gently sway to the music.
  • Look at photo albums together.
  • Make a collage with family photos or pictures cut from a magazine.
  • Make colorful paper chains to decorate the house.
  • Plan a family zoom party. If you have a musician in the family have a sing-along.
  • Try an intergenerational activity like a story chain. One person starts the story and hands it off to the next. It’s a little like the game telephone.
  • Do a puzzle, do board games.
  • Get out some watercolors and paper.
  • Borrow a neighbor’s dog, if you don’t have one and go for a walk.
  • If there’s snow on the ground, bring enough inside to cover a tray. Use food coloring to make designs.
  • Make and/or decorate a gingerbread house.
  • Bake gingerbread and eat it warm with whipped cream.
  • Make and decorate cookies. Then bring them to a neighbor.
  • Read to your care partner.
  • Give your care partner a massage.

If your loved one is in a care facility

  • Try to connect on Facetime or Zoom. Even if your care partner can’t see you very well, hopefully hearing your voice will help you to connect emotionally.
  • Drop off a basket filled with special treats and flowers.
  • Send a CD of favorite music.
  • Fill a memory box with small, special mementos.
  • Puzzles and coloring books help with fine motor skills and uplift the mood.
  • Seniors who loved to dress up will appreciate glittery and colorful costume jewelry.
  • A favorite book on tape might trigger memories and put a smile on one’s face.
  • Provide an aromatherapy diffuser that plugs in the wall, with an uplifting aromatherapy oil.

My 2020 Thanksgiving prayer

I am grateful for being loved and loving. I am grateful that I’ve stayed healthy this year. I am grateful to authors who share their beautiful imaginations, I am grateful to my parents who, many years ago, let me go west to college, where I’ve lived in the Rocky Mountains ever since. I am grateful for my beautiful environment, my comfortable home, my book club, and my writing groups. I am grateful for being able to eat organic food and drink pristine spring water. I am grateful that I live in a place where intelligent people question authority. I am grateful that I have healthy children who are contributing members to society. I am grateful for being blessed with four gorgeous, delicious and healthy grandchildren.

I am so grateful to be alive, and for so much more.

May your Thanksgiving be filled with good health, friendship, hope and ease.

Amen.

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”–winner of the 2018 Book Excellence Award in self-help– in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

The loneliness of caregiving: How to stay socially connected

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Closeup of old woman hands holding mobile phone

Woman with mobile phone

My husband had younger-onset Alzheimer’s disease. The hardest thing for me during the duration of his illness was that I lost my companion. He was the person I made important decisions with. The person I went to movies with, ate dinner with, had interesting conversations with, traveled with, and shared delight with over the accomplishments of our children. He was the one I could complain to if I had a headache, stomach ache, or sore throat, without worrying about being called a hypochondriac or a baby. He was also the person who always cheered me on when I succeeded in achieving my goals.

When it came time to make the decision to move him to a memory care home, I especially missed having him help me decide on which room he’d live in, what type of furniture to buy, and the mattress he would sleep on. When it came time to bury him, it was agonizing for me to choose the plot of land where he would be laid to rest, and where I will be eventually interred.

During my many years of caregiving, I would often hide behind a mask of cheerfulness. It helped. I didn’t feel like a prisoner because I hired people to take my husband out to see a movie. Several of his friends kindly took him to lunch on a regular basis. It takes an effort to maintain friends and to stay socially involved, especially if you no longer work outside the home.

I promised myself that I wouldn’t let my husband’s disease ruin my life. I kept an active calendar filled with dance classes, lunches with friends, and even pursued a certificate in nutrition–all the while he was ill.

But it took planning and some might think I was a bit selfish. But when you look at the grand picture of caregiving, taking care of your personal needs is anything but being selfish. Studies show that 40 to 70 percent of family caregivers experience symptoms of clinical depression. One of the reasons, besides the daily stress, is isolation and loneliness.

Now for the lecture part: If you are a caregiver it is vital that you maintain a social network. Here are some ideas:

  • Stay connected with friends and family either through Facebook or another social media outlet, or by telephone or email, etc.
  • Make a lunch date with a friend at least once a week.
  • Many places of worship offer support for caregivers and families, including social events.
  • Go to a class—any kind of class: knitting, dance, weight training.
  • Join a support group—The Alzheimer’s Association offers classes and workshops for caregivers and for the person with memory loss.
  • Ask your friends and family for respite care. Have someone come over for a couple of hours a week so you can at least get out for a walk or go grocery shopping.
  • Go to the movies with a friend. It’s a great way to escape into another world for a few hours.
  • Call a best friend who is happy to talk; call someone who makes you laugh–laughter is truly the best medicine.
  • Bring your loved one to a Memory Cafe/Alzheimer’s Cafe. The challenges of living with memory loss can sever social connection at a time when it is needed most. Throughout the US and Europe, this casual social meeting is for caregivers and their care partner (the person they are caring for). Memory Cafes offer a way to socialize, explore art, music, poetry and listen to discussions and presentations. A Dutch psychologist opened the firs Memory Cafe in Holland. today there are about 200 Memory Cafes in the U.S.
  • Chat online with other caregivers. The Alzheimer’s Association offers chat rooms and so does the American Cancer Society. Check Elder Care Online for chat room and caregiver forum links. ElderCare Online’s Caregiver Support Network brings together online resources, groups and experts to create a virtual community dedicated to improving quality of life for you and your loved ones.