Thursday, October 11, 2018

The Gradual Decline into Oblivion

            Issues associated with dementia are difficult to recognize at first, like having trouble downloading bank statements, balancing checkbooks, and merging into traffic. In my wife’s case, those issues became critical enough by October, 2013, that I could no longer ignore them. I began taking control of our finances and bills. By late 2016, I was convinced there was a medical problem, so I requested her doctor address her issues. Her doctor administered the Mini Mental State Exam, and we discovered my wife could no longer draw a clock face on a piece of paper, count backwards in steps of seven from 100, spell five-letter words backwards, or draw two intersecting pentagons. After more tests, some costing thousands of dollars, her initial diagnosis was Lewy Body Disease, a mix of Parkinson’s and Alzheimer’s. We were devastated. There is no cure.

Over several months we saw more experts and the diagnosis was refined to Mild Cognitive Impairment (MCI), a precursor to Alzheimer’s. Without a known cure, we were told all we could do was get her affairs in order. Because my wife was only 58, we were also told the disease might advance faster than it does in older people, so we should act quickly.

I immediately began looking for medical studies that might address the problem. I found one called the EMERGE study. I pre-qualified my wife online, and we entered a period of pre-study testing. She qualified, but just barely because the study only took patients with minimal decline. She completed the first 18 months of the study and was enrolled in the five-year follow-on program. At this point, she has received the drug aducanumab for a little over two years. Listed below is what I can report to you.

1. She can still take care of all her personal needs—dressing, hair, makeup, eating, and the like. As long as she can do these things, she will remain in the MCI category. When she can no longer do these things, her diagnosis will change to Early Alzheimer’s.

2. There is still a gradual decline in capability. Although subtle, she notices when she can no longer sign her name, dial a number on the telephone, write the alphabet, or do things she once did without the slightest thought. Realization of lost capability inevitably leads to tears and mild depression.

3. Although she once earned straight A grades in calculus, concepts associated with numbers are no longer available to her.  Computers and related items, such as streaming TV, are out of the question. I recently asked her to find the “zero” on the keyboard, and she could not do it. It’s as if the link between what her eyes see and what her mind recognizes is broken.

4. She can make a sandwich, but can no longer cook. She cleans parts of the house and works in the flower beds, but no longer has the incredible capability to organize things she once had. Sometimes small things baffle her, like turning on the water at a hose bib. Planning for trips, meals with friends, appointments…things she was once a master at…is no longer possible.

5. Dealing with frustration, especially for her, is a full-time job. We are forever searching for things that are mislaid…or for things that are right in front of her but not recognized as the item being sought. Some things disappear and never reappear. It’s easier to buy new ones than deal with the frustration of trying to locate that which could be left anywhere at any time.

6. There is a steep learning curve for the caretaker. At first, I was not aware of her medical issue. I thought she was just being careless or ditzy. Now I know I must be in service mode 24X7. I encourage her to do the things she can and try to provide activities she can do, but I am still learning. She can be very insistent to do some things I know she cannot do, but she is not willing to give up. In those cases, I need to set aside what I am doing and “assist.” That generally means I will do what she wants done—anything to ease her frustration. I cannot imagine what it would be like to gradually lose capability.

7. There is often anger, especially at me. I accept this. I would be angry too if my brain were dying. Mostly, she expects me to understand what she is experiencing. That is difficult. She sees the world through a lens that is not available to me. Anger and hurt feelings are difficult to deal with. All I can do is offer reassurance and remain by her side.

8. My wife is easily confused and no longer understands explanations about complex movie plots or how things work. I’ve found it best to just accept her view of things and move on. She cannot help the way she sees things, and I cannot change her perception. Patience has never been my strong suit, but I am trying with all my soul to be better. Above all, I love her beyond measure and will do what must be done to help her through this.

9. Although I would not expect it, my wife’s memory is still mostly intact. If you ask her to repeat five items you have just named, she might only recall two or three; however, her recall of things we have recently done together and things we have done in the past are still quite good. 

10. I believe the aducanumab has been a Godsend. The patients who received the placebo in the study no longer know who their doctors are. My wife is still here and quite social. While she can no longer play card games without assistance, she enjoys social interaction with friends a great deal. We have quit ballroom dancing, but we still visit all our old dance buddies. We take cruises and travel some, but that might come to a halt in time. Preparing for travel is upsetting for her. The last time we left the house, I packed her bags—that seemed to lessen the trauma of leaving. In the future, I will pack her bags ever time. It is wrong to put her in a position where she must plan for a week away from home when her ability to plan has been taken from her.

11. My wife retains most spatial orientation. She can still walk our neighborhood alone. Away from our immediate area, however, I must watch her carefully. I try never to let her out of my sight, but I have begun insisting she carry a card with phone numbers on it in case she gets lost. My greatest fear is that she will become lost, get confused, and not know how to ask someone for help to reach me. Therefore, we have pre-established rules on what she is to do if she is lost in a store: go to the front of the store and DO NOT EXIT. So far we have not needed that, but I know a time will come when we will.

12. Overall, we are muddling through. Our only hope is that a cure will be discovered during the additional time the aducanumab grants us.

Thanks for reading,

James L. Hatch
P.S. Please check out some of my books from Solstice Publishing: The Substitute; Oh, Heavens, Miss Havana!; The Training Bra; The Trophy Wife; Ordinary People; Extraordinary Lives; and Aftermath Horizon.


Tina Donahue said...

So sorry for you and your wife, James. This is heartbreaking. Given how young she is, and the dual diagnosis, is there a genetic link in her family? I was just reading a study that said periodontal disease, even something as mild as gingivitis, increases one's risk of dementia. Elevated blood pressure is also suspect in some studies (eg: mini-strokes). Perhaps it's a perfect storm of one thing or another. Hopefully, researchers will find a cause/cure soon.

James L. Hatch said...

Hi Tina:

Yes, almost all of her relatives died from Alzheimer's and/or Parkinson's, but generally at an older age. She definitely lost the genetic lottery but there is hope. New medical advances are targeting the oligomer precursors to amyloid plaque. I read that a "cure" might be available, at least for testing, as soon as 2020. Something like that could be a game changer. As for now, we are hoping she can stay on the aducanumab. She responds well to the drug; however, there is the possibility of a brain bleed. Her last MRI two weeks ago might show that. The MRI will be redone in two weeks. If a brain bleed is actually in progress, the study people will take her off the drug. If that happens, there is little hope. We just have to take it one day at a time.

Tim Smith said...

James, I'm so sorry to hear about what you and your wife are going through, but I can relate. About 5 years ago, my mother (89 at the time) began showing those same signs. I worked in the mental health field, and recognized the symptoms of dementia. It was a quick downhill journey after that, and most days when I would visit her in the nursing home, she recognized me as someone important in her life, but couldn't remember my name. Just hang in there and value each day.

Unknown said...

Jim, you deserve credit for being so living and caring. My father was the same with my mother. She developed some form of dementia in her 40’s and died at age 58. He cared for her all those years. Please consider me a friend and you two come for a visit. Call me @ 254-718-1083. Susan

James L. Hatch said...

Tim Smith. Thank you for your insight. I rue the day she no longer recognizes me, yet I fear that day will come sooner than later. The adcuanumab has worked miracles. She, as a person, is still here. I do not know how long the medication will be effective. We try to live every day with as much joy as possible. It's a terrible disease.

James L. Hatch said...

Susan: I am so very sorry for your loss. We do miss you, too. I will make a point of bringing Meredith over with me soon. You might be surprised how alert she seems much of the time, yet some issues can confuse her quite a bit. You have known her for a long time. She really likes to visit with you and greatly values your friendship.

Harlie Williams said...

Prayers to you and your wife. Yall's story moves me still and I'm glad that at least you are not putting her makeup on. My uncle had dementia and it is hideous. Topple that with a second bout of cancer...he lost him too soon.

James L. Hatch said...

Hello Harlie. I am so very sorry you lost your uncle. MCI and Alzheimer's is a terrible disease. I cannot imagine the horror of losing one's self a piece at a time. I know my wife is aware she is slipping. She cries many tears whenever she is confronted with a new thing she can no longer do. I am thankful that, so far, she is not confrontational -- she is the same caring and loving woman I married so many years ago. She and I are extremely close, as we always have been. Her doctors are also pragmatic, instructing her to try to enjoy whatever experience she can while she is still able. We are trying to follow that advice.