Caregiver Ups and Downs

“Family means no one gets left behind or forgotten.” — David Ogden Stiers

It is summer in the south when blueberries, blackberries and peaches are turned into desserts, jams, and jellies. A few days ago juice ran down my arm as I peeled fresh peaches. I am enjoying peach cobbler made with my mom’s recipe while typing. Her birthday was on June 16th and she has been on my mind. I still find myself using her recipes when cooking.

While reflecting on mom’s final years, I have no regrets about making sacrifices to be with her when I could. I have lots of regrets that I didn’t always know exactly how to naviagate the compex plan of care that she needed. Most of us learn much as we travel down the road of caring for someone who is no longer the strong capable person we once knew.

Emotions run wild and changes happen faster than we expect. The disease outpaces our learning curve and we all end up drained emotionally, physically and spiritually. When this happens we need to pause and focus on what we have done right.

My number one thing that I feel I got right was learning to make the most of every situation when mom and I connected. Early on we could shop together and enjoy my grandchildren and her greatgrand children. I let her help with holiday meals in ways that she could.

We traveled a few times to her favorite places. Answering her repeated question about what time we left could have stressed me, but I made it a silly game. My answers changed each time she asked. When the alarm went off. We left at 6 am. We left when the rooster crowed. We left as soon as dad packed the car. These answers kept her entertained.

I planned carefully for our last trip. My thoughts were that it could be a difficult trip. I prayed for a peaceful time and God answered. We found a lovely one level cabin in the mountains near Cades Cove in Tennessee. Mom loved the large yard that had a flock of wild turkeys visit. On the day we drove to Cades Cove light snow flurries fell all day. Mom was calm and loved every moment. I cooked meals in so she did not have to be in crowded restuarants.

As mom’s disease progressed, I could enjoy the moments that she became silly and like a playful child. It was a side I never would have seen if she didn’t have Alzheimer’s. Inhibitions were torn down and she lost her resolve to always be the strong one who was responsible for everyone else.

She was the oldest child and helped care and protect her younger siblings. Two of her sisters had been told that mom was a swallow risk as the disease progressed. They just knew that a piece of gum would help mom have a fresh feeling mouth. They gave mom the gum and she chewed it happily. When they had to leave they needed to retrieve the gum. With a swab, they tried to fish the gum out because neither of them wanted to chance being bitten. Mom promptly clenched her teeth on the stick and grinned. It took over an hour to accomplish removing the gum. A nurse told me she went to investigate the giggles and laughter she heard coming from mom’s room. There was so much joy between the sisters that she asked me to forgive them for the gum when she relayed the story. I did forgive them. They were learning how vital it was to make the moments of connection count.

In her final years, we connected when I called her Linda, not mom. She could not relate to being a mother, but she knew I loved her and was supposed to be there. I would gently massage her hands with arnica oil to help her stretch them without pain. I knew the music to play on a bad day. On really bad days, I sat by her side with tears as I prayed for God to give her peace. I placed my head on a pillow next to her and told her what a wonderful person she was.

About five days before mom moved from this earth to her heavenly home, she had tears when a sister called. She squeezed my hand when a grandson called from across the country. She squeezed the hand of a granddaughter and great grandchild who stood by her bed. This continued most of the afternoon as family calls came in. I wondered if she really knew each voice. Then my sister in law called. I placed the phone near mom and had it on speaker phone. She thanked mom for raising an amazing son and then assured her that she had hard it had been since she was raising his 6 kids. Mom tried to laugh. We all knew that for that afternoon we had all connected. Tears of joy abounded.

Do what you can to make those heart connections. You will never regret doing this. Making new connections may require forgiving the one you care for if any hurts are in your past. This is a tough one, but it will become necessary for you to do this so God can heal your hurts and enable you to love more deeply.

Word for Today

Ephesians 4:32

Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.

Song for Today

Prayer for Today

Dear God,

Thank you for showing us how to love and provide care for those who can no longer take care of themselves. Give us ideas for keeping our connections.

Amen

When My Plan Doesn’t Work

While working on building projects with my husband, I learned the importance of fine tuning as we go. Measure twice and cut once. Check for levelness and squareness. Hold your breath when trimming with paint. Wear your grubby clothes. Use a drop cloth. Have a shop vac handy. Having the right tools is also vital. Hand planers, levels and safety glasses are always nearby for when we need them. The finished product is well worth the effort and time spent. You watched a plan come together and smiled at the finished product.

If only caregiving worked the same way! You can plan, carry out the plan and then find there is no fine tuning that can make life turn out as you thought it should. You cannot just sand off the edges when raw emotions erupt into anger and frustration. The breakfast you lovingly prepared because your spouse seemed to enjoy it immensely yesterday is pushed aside and they refuse to eat. You shopped for a few new shirts and your husband refuses to wear anything except the one he has worn for three days.

I found a book from my senior year of high schoool. The five year plan I set for myself was to go to college and get married. I check that one off. The ten year plan was to buy a house and have children. Check again! Then life happened fast and furious. Before I knew it the kids were off to college and our nest was empty.

We had a flurry of weddings and grandchildren. All was going according to what I had expected. Then I noticed my mom just wasn’t herself. My heart was gripped with the words Alzhiemer’s Disease. Caregiving was not in my plan for many years down the road. I couldn’t push the schedule back. Adjustments had to be made quickly. For the early years of the caregiving journey, frequent visits, prepping meals for the freezer to help dad, taking care of doctor visits, monitoring finances online and hiring help for my parents worked.

My time was being split between my parent’s home 6 hours from mine and my own home. Trips to visit grandchildren became less frequent. We made a couple of major adjustments. We moved near our grandchildren and my husband was able to work from home and travel with me. This cut my trip to 3 1/2 hours each way.

In the end, my parents were both declining. I moved them to an assisted living and nursing home close to me. Visits were then daily. My mom was in end stage with Alzheimer’s and my dad struggled with mini strokes, diabetes and incontinence.

I know that I never had to provide full 24 hour care like many of you do every day. I do know my mind was always questioning things. Did I give my husband enough time? What am I missing out on with my children and grandchildren? Did I leave food prepared and clothes washed for my husband and my parents? How many more hours do I have to fight traffic? When is the next doctor’s appointment? It felt like I was on one of those round spinning wheels we used to play on as a child. I had run around and around and then hopped on to ride. Grasping tightly to the metal bar, I held on so I wouldn’t fall off.

In the midst of my trying to plan for whatever happened, I came to realize I could not plan for all of the twist and turns ahead. I had to trust God with the plan. I had to let Him fine tune and adjust me for things to work. He then held me tightly so the ride of life would not throw me off.

Some of you have feelings of guilt and inadequacies. Recently I read another blog for caregivers. A caregiver felt like a failure. When asked why, her response will make you smile. She failed to give her husband a daily bath. Wow! I consider one every third day a success. You make great plans, but life as a caergiver shows you they don’t always work. Continue to plan but have several backup plans as well. Trust God to guide you and hold you tight.

Word for Today

Jeremiah 29:11

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Song for Today

Prayer for Today

Dear God,

I humble myself and ask for you to move the mountains that I cannot move. I will rest in your arms and let you hold me close while I witness your work in my situations.

Amen