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My Journey As a Caregiver … in 3 Parts

KaywParents2013I was asked to share my caregiving journey on Healthline. It turned into a three-part series, and might have some information that you find beneficial.

1) The Fight to Become My Parents’ Caregiver

2) What It Means to Be a Caregiver

3) The Painful Choices End-of-Life Brings for the Caregiver

I’m happy to be on the other side of the journey, and can now treasure all the skills I learned, and the moments I shared with mom and dad. Traveled.

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Grief is a Sneaky Beast

lefsemakingThis Christmas marked the one year anniversary of Mom’s death. My first thought was to take a trip. I didn’t want to be at home and relive last Christmas. I had forgotten we were hosting my in-laws, so my urge to run away from Christmas at home was thwarted. However, I was happy to be able to enjoy the holiday with family around.

I recognize now how my instinct to run from problems has changed over the past decade. I couldn’t run away from the call to step in and help my parents–but I did have minor tussles with myself when things got really tough. Caregiving changed me in many ways and I have to admit this one was a change for the better.

I learned to live in the moment and focus on what is in front of me. My mother-in-law used this Christmas to pass the baton on my husband’s family tradition of making lefse for the Swedish dinner. It’s a three day process. The first day you make the dough, the second day you make the lefse … and the final day is all about eating. It was a wonderful new tradition to absorb into our holiday.

On Christmas Day, I knew I had 5 sets of eyes on me. My husband reassured everyone that I would not want to talk about mom or the event. We actually had a lovely Christmas and I only reflected fondly on my memories of both my parents who weren’t with me. I was happy to have moved through the holiday surrounded by family and know every year will get a little easier.

I was surprised to find myself in tears two days after Christmas when I walked into a Valentine display. I will never see a box of Russell Stover’s and not think of my mom. I’m still shocked at how quickly the sadness descends to remind me of my loss. However, I’m now more mindful to quickly fill that void with all blessings that currently surround me. Enriched. 

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The Kindness of Strangers

heiberg-ii_usma_3dec16The small acts of so many made my job as a caregiver so much easier. Humanity includes many wonderful components we sometimes forget.

I just received a picture of the wreath that was laid in honor of my grandfather at West Point Cemetery. Not only do volunteers gently deposit it, they also take the time to take a picture and have it sent back to me so I can share it with the family.

Best wishes to all of us who are missing a loved on on this holiday.

I am grateful to all of those who helped me on my care-giving journey. Some of you stepped in to help when I needed to step back, or encouraged me on when I wasn’t sure I was able to continue. Many thanks. Remembered. 

 

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3, 2, 1, … Enjoy Your Loved Ones When You Can

momxmas2014CHRISTMAS 2013: Just three years ago, mom was opening up a basket of breakfast treats. I remember feeling a bit lost about how to manage through the holidays. It was only a few months after Dad died. With no short-term memory, Mom, with Vascular Dementia, was having a hard time remembering, absorbing, and even grieving her partner of 60+ years. I wanted her to have a nice Christmas and worked to find a cute little Christmas tree (shown behind her) in hopes she wouldn’t feel so alone in this world.

I remember at this time working with the staff in her Assisted Living community to help her manage. She was calling me repeatedly asking about Dad. She was also getting into physical disagreements with other residents and the community was having a hard time helping mom through this period. This was about the time I started to recognize that the community she was in really wasn’t the right fit for her needs. Mom needed a memory care community — not Assisted Living which addresses physical healthcare needs. She was always on the go and craved activities with meaning and purpose.

Thankfully, my sister came and spent several days with her and I had a nice reprieve from caregiving over the holidays.

kayandkittyxmas2014Christmas 2014:  I had found mom a new community, but one week before the move date, she had a terrible reaction to a pain medication that resulted in her being bed-bound for nearly a month. After being in bed for so long, she was weak and didn’t trust her own two feet. It was several months before mom was back on her feet and moving around. On this Christmas she was still using a wheelchair to get around.

I went to visit her on Christmas Day and after opening up presents and eating a little, she asks to lie back down in bed. I arrived with my ugly Christmas sweater in hopes of bringing some silly humor to the holiday. She was in good spirits and we had a nice afternoon together. Before I left, she thanked me for “making her feel human again.”

Christmas 2015: Ten days before Christmas I was in the Emergency Room with mom who was diagnosed with a broken hip. She had a mini-stroke somewhere in the midst of all the commotion. We learn she is too weak for surgery. Mom no longer recognizes me and is moved into the care of hospice. I visit mom daily and spent most days crying as she sleeps. On Christmas Day, her breathing is a little more jagged, and by early evening I get the call that mom died. As bitter as that moment felt, I also recognize that we just received a blessing. Mom no longer has to live with dementia and can now rest with Dad.

As I approach my first Christmas without having to balance life as a caregiver, or worry about how mom will spend her holiday, I recognize how quickly the journey can end. This year I will focus on the wonderful holidays I did get to spend with my parents. Reflected.

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Three Reasons to Hire An Aging Life Care Manager

logoI was the primary adult family caregiver for my parents for five years. My journey ended last Christmas when my mom passed away. I know I will be moving through a grieving process for many years to come, but was happy that her life with dementia ended. It’s a nasty disease that steals away our loved ones bit-by-bit.

I learn by doing and used this blog to chronicle many of my lessons in hopes that it may help others. One of the valuable resources you should be able to find in your community is a Life Care Manager (formerly referred to as a Geriatric Care Manager). They are usually nurses or social workers by training and have layers of additional education and practical experience required to earn this designation. Aging Life Care™ is a holistic, client-centered approach to caring for older adults or others facing ongoing health challenges. To find one in your area, you can visit the Aging Life Care Association.

Looking back, I could have called them in to help more and should have. There wee blocks of time when every visit to see mom was filled with medical follow-ups. I would have preferred to just visit mom and be her daughter than try to run down a host of issues from getting her toe-nails trimmed to a concerns about some intermittent dizziness she was experiencing.

The three times I recommend  you consider hiring an Aging Life Care Manager include:

  1. When you are looking for a community. My parent’s had bought into a Continuing Care Retirement Community (CCRC) but there was a point when Assisted Living wasn’t the right fit for my very mobile mom with dementia, and Memory Care  only cared for individuals in the final stages. I hired a local firm to help me whittle down the choices and understand how to measure each community.
  2. When your loved one ends up in the hospital. There were a few visits to the ER for mom in the last year of her life. I called in help when mom broke her hip and to operate, the doctor was demanding I lift the DNR. It was complicated, and the Aging Life Care Manager helped me navigate my choices and fulfill my mother’s wishes.
  3. When you just want to be the daughter, son, or spouse. As you have already learned, there is so much you don’t know about a medical condition they may have or the way nurses, doctors, and community health services work, that I recommend bringing them in to just manage the medical needs.

If you are in the DC-metro area, I am happy to provide a referral to some wonderful Aging Life Care managers. Recommended.

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Honor A Vet or $15.00? Heck Yeah!

wreathacrossamEvery year, volunteers all across the United States place donated wreaths on the graves of hundreds of thousands of veterans. It brought tears to my eyes when I arrived at my dad’s gravesite and found one already laid in his honor last year.

As of yesterday morning, a Wreaths Across America spokeswoman said approximately 130,000 individual wreath sponsorships had been received for Arlington National Cemetery. A total of 245,000 sponsorships are needed to ensure every service member buried at Arlington is honored with a wreath placement—meaning 115,000 more sponsorships are still needed to meet the goal.

I hope you will consider helping ensure that all of our veterans are recognized by making a $15.00 donation that covers the cost of the wreath here. Every cent is used to purchase wreaths that are placed in Arlington National Cemetery by a gaggle of local volunteers.

If you would like to make a donation at a cemetery near you, use this link. Suggested. 

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VR Allowing Those with Dementia to Escape It’s Grip … If even only temporarily.

Recently friends shared two stories about the use of Virtual Reality (VR) for those diagnosed with dementia. The first video will bring a smile to everyone’s face (sorry about the 5 second ad intro), especially for those of us who cared fovrdementiar or are caring from someone with dementia. There were days when I could see the sadness on my mom’s face. When she started losing the ability to freely walk around safely, she lost one of her favorite coping mechanisms. It would have been fun to see if and what mom might like with this technology that she could have done safely from a comfortable chair.

The Washington Post also shared the story of a doctor using VR with her patients with very positive results. You have to visit the story to watch the video, but it’s interesting to learn how it’s helping some individuals that are exhibiting combative behavoir become more peaceful.

Maybe for the holidays you can try out Google Cardboard to see if someone in your life might find a little escape. If it works you could then invest in some of the more robust solutions that will work with iPhone and Samsung for sure. Intrigued. 

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