The Longest Goodbye

I like the title "Our Story" better than "My Story". Our story starts in 2012 when my then 58 year old husband came home from work one day and said that he couldn't do numbers in his head anymore. He had been a banker for over 35 years. He didn't do anything with numbers in our home. I have always paid all the bills, so I had not noticed anything amiss.

Journey to diagnosis

He went to his PCP and came home with a prescription for Aricept! Without any testing what so ever. It took us about two years to get a diagnosis of early onset AD. We were fortunate to have an incredible neurologist that specialized in memory disorders. She tested him for many things. Many lab tests, pet scan, lumbar puncture and MRI. She also send him for neuropsychological testing. We also went to Rush Medical Center in Chicago for a second opinion with the blessing of our neurologist.

Symptoms of AD

I am fortunate to be a nurse for 44 years. I was able to retire from my nursing job in 2018. He has been 24/7 care for about four years.

Through trial and error I have found ways to keep him safe. A bed alarm, flip locks on all doors, a GPS tracker in his shoe, a special medic alert bracelet, a double deadbolt on all outside doors. I also sent letters to all of the 10 other neighbors on our court. I asked them if they saw him out alone to engage him in conversation. I gave them phone numbers and car license plate numbers of all of our caregivers. Our neighbors have been one of our greatest blessings.

His dementia caused him to be aggressive, agitated and violent. At one point in time he was trying to hurt me and I had to hide in the bathroom and call 911. He ended up on a regular psych floor for a 11 days. He was diagnosed with Cap Gras Syndrome. That is where they think that the primary caregiver is an intruder and has done something to harm their spouse. This was particularly difficult because he is the kindest most gentle man ever. On the psych unit they were able to stabilize him with some different meds. This was truly a blessing.

In the three years that I have been retired, he has declined quite a bit. He became incontinent and unable to feed himself. Unable to perform any activities of daily living. He paced continuously. I had to hide all pictures. He thought there were people in the house. We had interrupted sleep for about two years. He had worn CPAP for years and would take it off many times a night. He would get up and take all the clothes out of the closet. The bed alarm was going off constantly. Or his incontinent device failed and we had wet sheets.

Becoming bedridden

He quit walking in Feb of 2020. I really didn't have a plan for what I was going to do when he quit walking, but then covid hit and my decision was made. I would care for him at home. So he sleeps in a hospital bed in the family room, and I sleep in another hospital bed. Someone needs to invent a hospital bed for two. I miss the closeness.

He is no longer agitated. He started on hospice in April of 2020. We have been blessed with the most incredible hospice nurse. We have an incredible support system. Our families have been a big help, as have been our neighbors, retired nurse friends, and friends from our church. We have two grown sons that live in our town, and they have proven to be men of God.

Support

I could not have done any of this alone. I feel blessed beyond compare. There are no words that could ever convey our gratitude to all the kindnesses shown to us over the years. In our crazy topsy-turvy world we have seen such goodness in people.

With all of that being said, I think my warrior is coming to the end of his journey. He is losing the ability to chew and swallow. This precious man coached every sport, was a runner for St. Jude, active in Scouts, and our church. If you needed a volunteer for something, he was at the top of the list. We have had a wonderful life together along with our sons. It has been so very hard to watch him suffer. I always pray that he doesn't really know his circumstances.

Some of my favorite quotes

  • "The hardest thing is watching somebody you love forget that they love you."
  • "It hurts to know you'll never remember the things I'll never forget."
  • "You can't explain what it's like to mourn someone who's still alive unless you have experienced it firsthand."

Some advice for new caregivers

  • Accept help. A very hard thing to do but people really do want to help you.
  • Avoid perfection. This was particularly hard for me as a nurse. Does it really matter if their clothes don't match, or they have on two different shoes?
  • Safety is a big big priority. If they are taking all the coats out of the closet that's okay. As long as they are safe it doesn't matter.
  • Don't take things they say or do personally. I know this is so very hard, but they really have no control over their words or actions.
  • Don't argue with them or tell them they are wrong. Again they can't help it. You can help it.
  • If you have a bad day you can always start out fresh tomorrow.
  • Don't be hard on yourself. We all make mistakes and most of this is new to us.

I think that I have a unique perspective as a caregiver for my career and now as caregiver for my spouse. I have given a couple of talks to med students. I often wonder how our life would have turned out. Why he was chosen to get this most dreadful disease.

Most days I try to not look too far ahead. Some days I just go hour by hour. I nap when he does. The laundry can wait. We are grateful for the kindness of others and look forward to a day when no one has to suffer the consequences of this disease. I hope that all of you are as blessed on your journey as we have been on ours.

Thank you for allowing me to tell our story. Sometimes I wish that I had kept a journal but then again most of the story I would like to forget. Be Blessed.

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