I think every person who has a parent with Alzheimer’s has a nagging question that pops into our thoughts from time to time. The time it seems to hit me the most is when I can’t remember a person’s name. My mind then keeps dwelling on remembering that name. It does come to mind later and I feel relief. No, I am not getting Alzheimer’s disease. Go away negative thoughts. I am doing alright.
Let us face the question together. What if this happens to me? It is not something to be ashamed of. I know that is true; however, I like to be in control of my thoughts and behaviors. Should I lose that ability, I know it will be frustrating and scary. I have always been a little independent. None of us want to have someone else bathing us, toileting us and feeding us.
I have talked with my husband about this. He wants to believe that this would never happen to either of us. We have seen enough to know it could. We have agreed to be open and honest with each other if we ever see signs of cognitive decline. We want to plan together and live as normal of a life as we can for as long as we can. We pray that God guides us through His plan for our life.
I have pondered getting tested before I even notice issues. I have listened to stories about the new medical infusions that can delay the progress of Alzheimer’s if caught early enough. Personally, I am coming to a point of thinking that I know it could happen and should be prepared, but I don’t want to find out it is coming and drag that ball and chain around for years before it arrives.
I intend to watch the results of the new medications, Leqembi and Kisunla. They are so new that I need to know how the person is effected. That would be a hard choice for me to make at this point. It is not a cure. It simply can delay the progress of the disease.
My grandmother developed Alzheimer’s later in life. My mom was diagnosed in her late 60’s. This does not mean I will or will not get Alzheimer’s. Neither of my relatives had early-onset Alzheimer’s. I am sharing some information from Mayo Clinic to explain.
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What is young-onset Alzheimer’s?
Young-onset Alzheimer’s disease is an uncommon form of dementia that affects people younger than age 65. The condition also is called early-onset Alzheimer’s disease. Most people with Alzheimer’s are age 65 and older. About 1 in 9 people age 65 and older in the United States has Alzheimer’s disease. About 110 of every 100,000 adults between ages 30 and 64 have young-onset Alzheimer’s.
Family history of disease
For most people with young-onset Alzheimer’s, the cause is not related to any single gene. Researchers don’t fully know why some people get the disease at a younger age than others do.
Risk factors for young-onset Alzheimer’s disease include a family history of the condition. Having a parent or grandparent with young-onset Alzheimer’s increases the risk of developing the disease. But a family history of the disease doesn’t mean you will necessarily develop the disease.
Genes that cause young-onset Alzheimer’s
Less commonly, young-onset Alzheimer’s is caused by a specific error in a gene, called a genetic mutation. Genetic mutations can be passed from parent to child.
Three different genes may have a mutation that causes young-onset Alzheimer’s disease. These genes are APP, PSEN1 or PSEN2. A person who inherits at least one copy of a mutated gene will likely develop Alzheimer’s disease before age 65.
About 11% of people with young-onset Alzheimer’s carry a genetic mutation that causes disease. But among all people with Alzheimer’s disease, fewer than 1% carry one of these causal genes.
Genetic testing for these mutations is available. If you have a family history of young-onset Alzheimer’s, you may want to do genetic testing.
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All of this information will not make the nagging question that invades our thoughts go away. The more information we have will help us make wiser decisions.
While you continue to provide care to others, focus on doing just that and not worying about your future. It is a hard thing to do. Almost every event I speak at or support group discussion I lead has someone who asks, “Does this mean I will get Alzheimer’s too?”. It is a difficult question.
For today, I choose to hope and pray that my mind will remain strong. If you notice my writing is poor, please comment. I may have just stayed up too late writing or had too much coffee.
You are not alone as a caregiver. You are not the only one asking themselves (THAT) question. There are huge numbers of people on this same journey. I encourage you to find other blogs, listen to podcasts and read. Snipplets of information gathered along the way add to your knowledge and toolkit for caregiving.
Have a blessed day and stop worrying.
Word for Today
Do Not Worry
“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?
Song for Today
Prayer for Today
Dear God,
Only you know my future and I trust you with that. When I allow tormenting questions to flood my mind, help me to continue to trust.
Amen
Walking Them Home 