Crossing the Bridge

This post is my most difficult post to write. I have revised and reflected for several weeks before sharing it. This morning I will make an attempt to say things in a way that speak the truth with love for all who read it.

Caregiving is a journey. It is a journey of walking a loved one with a terminal illness across the bridge to their final home. Other bridges may be crossed along the way. Bridges take us from one place to another. In the world of caregiving one place is a familiar home and the other is the unknown. Crossing that bridge creates much anxiety and fear for the person being moved as well as for the caregiver relinquishing the one they love.

To be successful in the crossing of the bridge from homes to facilities, a hand off occurs from the primary caregiver to the paid caregiver. Caregivers on both ends must make adjustments in their thinking and responses. They must make a sincere effort to understand where each other is coming from. They need to meet in the middle and link arms in the transition.

Persons employed in the field must understand where the caregiver comes from. Some caregivers come from a place of exhaustion, emotional distress, guilt and fear. They have given until they can no longer keep up with the daily responsibilities. They need help desperately but fear they are failing their loved one if they place them in a facility.

Others are not prepared to be a caregiver and don’t know what to do and place their loved one in care out of desperation. Many families must work and cannot provide constant care.

Every family has its own story. These are highly emotional stories. They have been told someone they love is terminally ill. The disease will progress. There is no detailed time table of how long this will take. Questions haunt them. Am I doing the right thing? How can we pay for this? How long will they know me? What will the rest of my family think? Who is going to help me with this load?

Tossing and turning at night as these thoughts run around in their minds they try to make decisions. Emotions and stress have them making decisions when they are not at their best. Logic and emotions mingle creating conflict inside of them as they arrive at one end of the bridge holding the hand of their confused love one.

The person on the receiving end is usually well trained. They are better qualified than the family caregiver simply due to experience and training. Most that I have met on my own journey are compassionate and caring people. I have seen people remaining after their shift sitting with an agitated person to calm them down. One morning at 2:00 am I heard singing and walked down the hall. I found a young man blow drying a woman’s hair as she held a hairbrush like a microphone. They were singing and laughing. Out of curiosity, I stepped over to the nurse and asked for their story. He was an aide on her floor and had noticed she was awake in the wee hours of the morning on his shift. He knew she slept late and they struggled getting her to shower. He suggested allowed him to give her a shower while she was wide awake. It was a beautiful gesture as well as heart warming to see.

These are examples of the people waiting on the opposite end of the bridge. Hopefully, they will walk to the middle and take your loved one’s other hand.

Communication on both sides is key to transferring a loved one to someone for their care.

Families must tell their story. They must give the facility all of the information they need. Describe your loved ones likes and dislikes. Create a well labeled memory book telling about their life. Include information about favorite music, hobbies, food and family. This will give the caregiving team ideas on how to best relate to them as an individual with a real life.

Staff can calmly explain to family up front that every effort is made to meet needs. There will be crisis every day due to so many patients having needs such as falls, medical emergencies or behavior issues. Sometimes a crisis will take precedence over normal routine. Personal one on one care is not possible 24 hours a day.

Families need to be informed when taking their loved one out and returning them creates stress and anxiety. Families need to understand that outings and holiday celebrations should consider the overall well being of the one with dementia and not about them having mom or dad with them for large gatherings.

Even when I knew it was time to cross the bridge, I cried all the way home that day after telling mom goodbye. It was one of the most difficult decisions I had ever made in my life. Yes, I called to check on her. I visited at odd hours to meet all of her caregivers. I needed peace that my mom was being well taken care of. I encourage families to visit and remain connected with their loved one and their care team.

Just writing this feels as if I am walking a tightrope. The tightrope I walk gives me a bird’s eye view that many never get. I know large numbers of caregivers both primary at home ones and paid professional ones. I do not want to step on anyone’s toes. We need each other because Alzheimer’s is a horrible disease and our greatest concern is for the one suffering from it.

Each person who gives care is important. You have been entrusted with a beautiful life or lives who need you. You have my respect and prayers for answering the call of being a caregiver. May God bless you richly for your efforts and kindness.

“There never was any heart truly great and generous, that was not also tender and compassionate.” Robert Frost

Word for Today

Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you. Ephesians 4:32

Song for Today

Prayer for Today

Dear Heavenly Father,

We come to you humbled. We realize we cannot navigate the tough decisions we face without your guidance and comfort. We thank you for this.

Teach us to work together as families and caregivers. Give us forgiveness when we fail each other. Give us compassion and understanding as we walk this out knowing we need each others input. Give us wisdom as we make decisions together.

Help us to have the attitude of Christ and love of Christ to pierce through the darkness of this disease and provide the best care to the one suffering from this disease.

Amen