A Change in the Air - A three-part story

It was a routine cleaning day until I found a pile of important documents needing attention. I questioned my husband and he was clueless. This was the beginning of my ongoing seven-year journey. I was in denial. Close friends and family members as well as our doctor brought up the subject of dementia.

Fast forward three years…I fell and broke my back. During a six-month recovery period I was in a full body brace 24/7. With time on my hands, I began to study dementia. I took on-line courses, met caregivers, professionals, etc. I realized this was my new life, however, having said that it’s important to recognize this is “what I do, not who I am”.

I questioned myself, how will I be able to compartmentalize the two and that is where the learning the steps to change myself began. With much thought and perseverance to discover answers, lists of cause and effect, including positive and negative reactions were complied with the help of others.

Of major importance were simple words, words we all know but words that now have taken on new meanings that lead to a positive change to reduce stress and anxiety for our loved one and ourselves.

There are some words I found essential to redefine.

The first three words on my list are:

Stuck: Acknowledge that when you are tired or overwhelmed you will not be able to focus on anything.  Stress goes up, tears run, anger jumps in.  Take a 10 minute break, ask yourself, “is it important, can it wait or get help”.

Clutter:  Our evil foe.  Take a small area at a time and get it organized.  Mark a bag for donations and when full have someone drop it off for you or get family and friends to help with a garage sale.

Argue:  Listen to the person, “Let me think about that” as you walk, humming a song you both know.  This works every time.

PART TWO

Today is two years later, with many changes for me the caregiver and my loved one. Dementia is a disease that progresses and takes away memory and the ability to function and eventually leads to death. A caregiver ends up shouldering the entire load if they do not learn about the process, make ever-changing plans to meet the needs of the loved one, set goals and ask for help! You cannot do this alone!

But, where and how do you start? If you were/are lucky enough to belong to a seniors group, pick up a Seniors Blue Book that covers Aging Well. Contact Caregiver Connections and ask for a Care Consultation. Connect with the Alzheimer Association (303-813-1669), Northwest Colorado Council of Governments (Vintage) 970-468-0295. Leg work starts here if you have not already started the process.

Speak with a lawyer so you will have everything you need. Make sure your name is on bank accounts, cars, homes, investments, insurance policies, the house — the list can be endless. Due to HIPAA, this even includes utilities and cable. Have a list of all passwords and keep them secure. Make sure your name is listed to be able to pick up their medications and talk with their doctor — as we age, it is always wise to have one other person identified. We cannot remember all of this, so have one notebook and be consistent and always date each entry because they can and will change. Be concise.

This does not happen in a day, a week or even a year — it is ongoing. A Granddaughter of mine who prints well did this for me. Grandchildren love to help us, although I realize that many caregivers have no children or family around. As we learn all we can and recognize that this is ongoing, we can reduce our stress, conserve our time and energy. Money and budgets have to be addressed. We can use a local gift card for a carry out or delivered meal or hair cut. Grief is silent in the sadness that we begin to feel, yet have not named it as such — it is the profound loss of the loved one as we know them. Our unspoken anger, less smiles and laughter. It is important to find a way back to oneself! Family and friends rarely can help you. Professionals can, and it does not have to cost money. Your minister, chaplain or local mental health professional are great resources.

The time now is very precious, the needs are greater while the response to you is less and less. Your work load is greater because they need you more as they are changed by the disease. It is very hard to remain calm, to talk softly, when you want pull out your hair. Instead, sing a song and walk away!

PART THREE

I was invited to lunch with eight caregivers on short notice. We renewed our lives after all the months of isolation due to COVID three important thoughts came to light.

First: Are the changes for each of us, as we watched our loved ones slip away over these many years. The learning curve of words we knew, now have a new meaning. The unknown challenges that we have learned to navigate, teaching us wisdom, fortitude, patience and a stronger self. Honoring each of us with grace and kindness.

Second: Learning to trust ourselves and developing a strong support system that includes family, friends, and many organizations. As time goes on, legal and medical personnel will have a part for us. As we incorporate our support group, we will become more flexible at having strangers come into our homes to share the load, giving us the time to become organized, so that we again have a quality of life. Remember we are a “person” first!

Third: The life as we knew it has forever changed. If we have applied the wisdom that we have learned, we can be proud that we were able to give our loved ones a quality of life with love, knowledge and compassion they would not otherwise had had! give yourself a big hug, and sing a song. You have earned it!