Posts Tagged alzheimer’s dementia

Our Story to Diagnosis on the Alzheimer’s and Other Dementia Roller Coaster

Hello, readers! I am excited to share a post with you that was written by a guest contributor. This caregiver’s journey toward getting a diagnosis for her husband was quite the roller coaster and took many twists and turns. Please read on to learn more about her and her spouse’s experience, and her advice for other caregivers. 

diagnosis

It all began in August of 2016, when after answering the same question for the fifth time in as many days to my husband of 26 years I decided to keep track of things I thought might not be normal. In mid-October I sat my husband down and told him I was going to go to with him to his annual check-up in November. He asked “Why?”.  I simply stated that I had noticed some things that concerned me about his cognitive state. He looked puzzled but agreed.

On November 22, 2016, with a little over two pages of notes and the Alzheimer’s Association’s Preparing for Your Doctor’s Visit sheet in hand, we were ready for our visit.  Dr. H. came in after reviewing the documents, sat down across from us, and said he would like to do some testing. Dr. H. administered a mental status exam, and unfortunately, the test results indicated that my husband was cognitively impaired. With a series of blood tests and a CT scan scheduled to take place before our next appointment in December, we left the doctor’s office with our heads swimming!  I asked my husband, through tears, if he was mad at me. I told him it was ok to be mad at me.  This is not what I wanted, but I couldn’t stand by with my head in the sand and pretend that nothing was wrong!

During this time, I was watching my husband go to work and come home with nothing left to give because he was trying so hard to keep it together at work. I decided that we needed some advice so I called the Alzheimer’s Association Helpline on a snow day off from school. They helped to talk me through the situation and even talked to my husband

As roller coasters do, ours was about to take a plunge down a steep hill!  At our neurology appointment in April, we were wretched about the tracks as Dr. R. told us he feels certain that Jack does NOT have Alzheimer’s but another form of dementia, possibly Frontotemporal Dementia (FTD). Dr. R. explained that my husband’s behavioral changes and his age were indicative of FTD.

One of the hardest things about dementia and especially the one we may be facing is:

  • That family and friends don’t understand he looks healthy and can hide it well for short periods of time.
  • They don’t see this man sobbing because he’s afraid he’s going to forget you and he does not want to be alone going through this.
  • They don’t see the fear in his eyes when he can’t figure out how to turn the shower off.
  • They don’t see the agitation that he can’t explain.
  • They don’t see how much you just want your old life back.
  • They don’t see that you will go to the ends of the earth for this man to keep him safe and at home with you.
  • They don’t understand how isolating it is for us both.

I know that one day this roller coaster ride will be over but for now it’s the ride we’re on. And it’s definitely not one to be on alone!  So friends, if you are on a similar roller coaster ride, pick up that phone and call for help!  You are not alone! Call the Alzheimer’s Association 24/7 Helpline at 1.800.272.3900 for support.

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