Caregivers, are worthy of care too❣️
Through lived experience I can tell you choosing to put my mother into care, after she'd lived with us for almost a year during the pandemic with frontal temporal dementia, was the most difficult decision I've ever had to make. I didn't make it as early as in hindsight I needed too. As a result of caregiving 24x7 while also experiencing my own complex health journey, prioritizing everyone else's care before my own and especially through the pandemic, left me almost incapable of making sound decisions.
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I'd signed the papers as I prepared to admit my mother to care and despite my entire family saying it was past time, I couldn't bring myself to choose to put my own needs ahead of my mother's. Knowing she would face a 2 week isolation period, followed by months indoors with limited sunshine, hugs, and or the daily walks she so desperately loved, I couldn't bare the burden of responsibility. I awoke each morning catastrophizing believing I would be the one she'd blame as she missed family, a kisses, hugs and unconditional love. As I watched the news seeing seniors locked in and unable to visit their families, I was grateful my mom was not having to endure that. My mind became a swirling mess of emotion, distorted thoughts and place where I internalized that I would be to blame. However, I was not to blame. The decision was not mine alone. I deserved care too. I was worthy of care, and so are you. Are you taking the time to meet your needs, ensure you're seeking support. I didn't and I paid an extremely heavy price.
To the extent that it became a significant burden on my own mental and physical health, which was already in decline. It wasn't until I ended up in emergency and experiencing a seven day hospital admission, that I finally realized the time no longer nearing, but now.
When I was discharged, I started planting serious seeds embedded into our daily conversations. I made the extremely difficult phone call (the call) and handed in the required paperwork for mom to join the waitlist for dementia care, and prayed it wouldn't be as difficult as I imagined and waited anxiously. Unexpectedly, the call came far sooner, than I expected that a placement was available, I wasn't ready yet.... however I knew that it was the correct decision. I told mom, that my own health was declining, which was very true, and that I needed to take good care of myself. She's a mom, she understood. I took her for a drive to her favourite park where we went for walk beside the ocean, we stopped on the way home to our house at our church, despite the pandemic, I'd phoned ahead. Our compassionate priest opened the church where we alone could sit quietly while we both prayed. Then the priest came in briefly to pray for mom. I knew this would ground mom as well as that it may be her last opportunity to be in church for some time, it helped. She had immeasurable gratitude. What might your care-recipient need to find calm, peace and stillness as their routines shift and they move into care?
Then we headed to our home for our last night with mom. I made her favourites for dinner and afterwards explained the plan. "Tonight Mom, we'll pack a suitcase," I asked her to choose enough clothes for two weeks. While she packed, tears formed in my eyes, yet she was tender, quiet and followed instructions. Yes, it's hard. Yes, it's sad. Yes, it's normal to be sad and overwhelmed in these circumstances. I didn't try to hide it. I'm slowly learning to assert myself and show my emotions, knowing I'm worthy. Her dementia had already progressed to a stage where she knew that her brain wasn't working well, and although she'd come to love living with us, she seemed to understand that I needed to look after me. She wanted what was best for me. She packed. I don't believe she fully comprehended. I was grateful for her calm.
While mom packed, I also packed everything to make her room at her new home away from home, as much like her apartment as I could. I packed a tote of all her favourite pictures, several paintings our children had painted, a special quilt all her friends had sent a square and we'd created for her 80th birthday several years ago, and all the things that I knew where important to her: wipes (my mom, loves to use a wipe to clean her hands before a meal), sheets and blankets and favourite slippers. I bought her a new pair identical to those she loved. I made posters with collages of grandchildren, family members and her friends from various communities of care: church, her seniors exercise class, the bridge club. Each photo labelled with the person's name and connection. With my picture, I wrote: Jocelyn, your daughter in Comox. Mom has another daughter, who lives in Thailand, so I included as much information as possible to help mom with feeling loved and connected.
The best advice came from another family member at the care facility, I met while visiting in early days. They'd suggested we purchase a digital photo frame which can have photos sent to it electronically over wifi. Yikes, they're more expensive than I imagined, but Mom absolutely loves these changing visual reminders. We set it up to change every 5 minutes. Enough time that mom can think about each picture, who is pictured, and have adequate time to process and reflect on context and background memories. This has come to be a significant blessing, which grounds her. It's on 24 x 7 in her room facing away from her bed. It faces her chair where she sits or reclines throughout the day. A recliner from our home that she'd come to love and knows how to operate. Familiar things, are super important.
The next morning, I cried and was tearful. We went for a lovely drive and I told Mom that at the end of the drive my husband and I would go together with her to her new apartment. With FTD, her language is very limited and apartment, was a familiar word: she lived in an apartment for 22 years, prior to coming to live with us during the pandemic. While she sat on the bed in her new space contemplating in silence (she has very limited ability to communicate due to FTD), I decorated her room to look exactly like her apartment. Her quilt was hung on the wall. The recliner positioned to see her new tv, and I put on her favourite show, curling, which she loves to watch. It's been a favourite for years. While she watched the game, I hung curtains, put up posters, placed all her special things. We bought a small table so that she wouldn't need to eat off of the hospital tray beside her bed. The unit has been created in what was previously a hospital. I knew her habits and knew she'd want to eat in her room. Most meals are served in a common area, however mom is very private so elects to eat both her breakfast and supper in her room, which is easily accommodated, joining others for a single meal a day at noon for lunch. You are your loved ones best advocate, at this stage and the more you can establish routines that make them feel at home, the more likely the transition will be smoother for all concerned. What can you do to help them feel comfortable, confident and loved in their new home. For my mom, knowing that I'll be visiting on a regular schedule is key. Everyone is individual, but everyone needs contact, care and love from their people!
When a loved one first moves into dementia care, they're aware they'd rather not be there, however the more you make it feel like home, the easier it is to settle in. I spent the afternoon with mom, that first day and noticed she was beginning to get tired. It was a lot to take in for her especially, and for me too. I encouraged her to move to her recliner, which is electric and she has muscle memory about how to recline. She wouldn't need to learn how to use a new chair, which was why we chose to give her ours. It was familiar. I brought familiar placemats for her table, a couple of decks of cards we'd been playing with for months. When I felt it was time to leave, I gave her a lap blanket she'd always used at our house while reclining; and let her know it was time for me to go. I reminded her for what seemed the hundredth time that day that I loved her and that I'd be back tomorrow morning with a hug. I knew that my plan was to visit daily for at least the first two weeks. Initially, we both needed the comfort of a gradual release. She gave me a lovely kiss, as she had every night for the past year , and I left with "I love you! See you in the morning." I keep my promises, and she knew I'd return.
*Mom's room in care. When we're out and about or she's at our home now, she'll say, "I'm ready to go home now." A good sign, she's happy and healthy in her new home. The decision was a good one, and this caregiver, can enjoy quality time, while also prioritizing the care I need and life-balance. The care-giver, became a care-partner. Mom and I now are partners. I mourn the loss of the mother I knew, and dependent on. Now its my turn, to care in a way that's loving and kind to both of us.
For the next two weeks, I'd spend the morning visiting (2-3 hours) until she got sleepy. When she was tired... it seemed a natural break for me to leave and to give her time to rest, re-charge. I'd head home. As weeks become months, I came to realize I needed to limit my visits to ensure life balance and self-care, so we planned together for a new schedule of 3 visits a week. Each is a blessing. One day a week I pick her up and we go to her favourite park for a walk beside the ocean. One day a week we go for a drive and visit. Often we go for an ice-cream, mom's favourite treat. Through the winter I'd take her a vanilla steamer, and this past summer a vanilla milkshake any time I went to visit. Who doesn't want a little something special. And flowers, my mom treated me to flowers for the past 20+ years every other week and often once a week, she'd brighten my day with a bouquet. Now It's my turn... I bring the bouquet to Mom. On Sundays, through the pandemic we'd watch our church service online virtually with Zoom and go for a walk outside. Each visit always include Ollie, Mom's favourite grand-dog. Happily now I'm able to pick up mom three times a week of outings and she's comes to our home, for an occasional afternoon, family celebrations, and for church as restrictions are allowing us to worship again.
*Mom in her favourite recliner, with Ollie!
Dementia is filled with silver linings:
1. Learning that we're #strongertogether, and that a supportive team of caregivers, and learning to reach out when I needed support. The Family Care-givers of British Columbia,
provided immeasurable support when I was in need, and their support is at your fingertips:
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Caring for a family member or friend is a tough job.
You may be holding down a full-time job or struggling to maintain employment.
You may have other caregiving responsibilities… like raising children.
You may be dealing with a health condition of your own or ignoring your own health because of the stress of caregiving.
The top thing we hear from family caregivers is that you feel burned out. Experiencing some stress is part of everyday life. When symptoms of stress persist though, they can be harmful. Use our Caregiver Self-Assessment to check-in with yourself and your needs.
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Call our BC Caregiver toll-free support line at 1-877-520-3267, 8:30 am – 4:00 pm Monday, Wednesday, Friday and 8:30 am – 7:00 pm Tuesday and Thursday. FCBC staff are experienced in dealing with caregiver situations. We take time to listen to you which distinguishes us from the busy health care providers you may encounter. We are then able to offer help with:
Information and referral to resources
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Our goal is to listen with compassion, remembering that while there may be common themes, each experience is different and so are the needs. For many caregivers, the support they find is in simply knowing they are not alone in their experience. We are interested in what you are going through and want to be among the resources you think of for support.
2. My mom, who had not previously been physically affectionate through my childhood became relaxed, unguarded, and delighted to hug and offer a kiss. I loved her new openness and letting go of her life-long fear of "What would people think?" It's been a wonderful gift.
3. The gift of enjoying mom's time living with us, will be a time I'll always treasure, during the discouragement of my own ill-health, the week we both lost our driver's licences within two days, her due to her declining cognition and me due to an abnormal EEG, meant we spent signifiant quality time together during a pandemic, where we both would have experienced isolation. The gift of quality time while she was at a greater stage of still being mom! There's joy in our new relationship, as care-partners. But I'm extremely grateful that I'm a recipient now of support, and care for the care-giver.
