Saturday, July 23, 2016

Will This Journey Make Me a Better Person? I Hope So.

One of the ways that I deal with uncertainty in life is to read. I research and read everything I can about the topic in question. Many readers will remember the pre-computer days, when researching meant driving to your university or public library, sorting through a card catalogue, and then searching through the stacks for the pertinent books or journal articles. Life is so much easier now!

Looking back over my past posts I realize that my thinking and understanding about this terrible disease is a work in progress. Some of it is altered by the many helpful and insightful comments left by my kind readers:-) And some of the changes are due to my own reading and researching. I thought I would share a couple of my more recent discoveries.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4927869/ This article discusses the scientific evidence   on the benefits and the challenges of a timely diagnosis. Benefits include early interventions, better management of symptoms, avoidance of medications that may aggravate the situation, and cost savings. Barriers include risk of stigma, increased risk of suicide, shortage of diagnostic services, and reluctance of health care providers to make such a diagnosis when there are no disease-modifying options available.

This really got my attention. http://www.kevinmd.com/blog/2016/07/alzheimers-dementia-world-denial.html It discusses the fear of loss of identity in the newly diagnosed. This makes so much sense to me. Jim had a very high-powered job with a lot of responsibility. His brilliant mind and his winning personality made him the perfect person for his job. I can only imagine how devastating it would be to realize that you are losing the essence of who you were for so many years.

Further reading http://www.medscape.com/viewarticle/753761 reveals that suicide is higher in newly diagnosed dementia patients. Firearms were the most common method of suicide. It appears that the loss of identity is a big part of the increased risk for suicide. This really gave me pause.

On a lighter note, it has been a good couple of weeks. One of Jim's friends has been after him to join a group of guys that gets together for lunch once a week. They are all friends he grew up with. Jim has always been hesitant. I would encourage him, but he always gave an excuse of why he shouldn't go. Last week I had plans to go out for lunch and shopping with a friend of mine. I told Jim I wasn't sure what time I would be home, but would probably be gone for a few hours. He said "what am I going to do today?" He then answered his own question and said he would go to lunch with the guys! Hurray! By his report, he had a great time :-)

Had a brief tense episode when he became concerned our air conditioner was not working. It was such a convoluted, confusing conversation, I couldn't possibly repeat it. Patience, a calming voice and lots of reassurance got us over this hump.

He continues to struggle with what are commonly termed "executive functions". We hired a worker for a repair on our home. The bill came to $150. Jim opened his wallet and found two $100 bills. The worker said, "here, I have a $50 bill to give you if you want to give me $200". Jim absolutely could not process this and called for my help. I'm just so grateful that he feels so comfortable to ask for my help. He handed me his wallet and said "here, you can do this".

But I realize that what I write about is really little stuff. It's important for me to remind myself of this. Others are so much further along in the journey. The shock of realizing how he was changing really shook me up at first. I never really had any denial; it was so clear to me what was happening. But at the same time it was a big adjustment for me. The man I married and the man I love so dearly was changing before my very eyes and there was nothing I could do about it.

But as time goes on, I'm adjusting how I think, how I react and how I respond to all of these changes. And, I think in the long run it will make me a better person. At least I hope so. I'm hoping that as this journey continues I'll find the strength to be the person I know I should be.



14 comments:

  1. It is exactly that, a journey. Our extended family person's MRI showed significant brain loss. Currently she's very happy in memory care. Apparently a very nice place to be, but pricey.

    ReplyDelete
  2. Yes, the cost of care is very expensive! So glad your family member is happy. It must be reassuring to everyone knowing that she is content and well cared for.

    ReplyDelete
  3. Have you asked your husband if he would be willing to take medication that might help his memory? Explain that it is like a super vitamin for his brain. You could write his doctor a letter explaining what you are witnessing and what your suspicions are. Ask them to send him a letter saying it is time for a physical. If he won't let you go in with him at least the doctor would know what to look for. They could check his thyroid level and his B12'level and make sure that is not the issue. It would be a start. It is tough when they don't admit to having a problem.
    Lorraine

    ReplyDelete
    Replies
    1. Jim is followed by his doctor every 3 months. He is on thyroid medication, and all levels are within a normal range. His Vitamin B12 and Vitamin D level are normal as well.

      Jim's doctor has known him for a very long time. When I think about it, I would be VERY surprised is his doctor was not aware of any of the cognitive changes. I'm guessing that his doctor is dealing with the issues as noted above in the research article. It is also possible that he has already discussed this with him. I'm not comfortable writing a letter to his doctor; if it was revealed, Jim would feel very betrayed by me, and I cannot risk that.

      Thanks for your comment Lorraine.

      Delete
  4. I can only imagine the shock. But it must be a relief to know that he trusts you enough to feel comfortable asking for your help. And, btw, lunch sounds like a great idea!

    ReplyDelete
    Replies
    1. Yes Tom, it is a huge relief that he trusts me! I never want to do anything to put that at risk, or do anything that he would consider a betrayal.

      Lunch with friends is always good:-) Gives you a different perspective and it certainly raises your spirits.

      Delete
  5. I agree with Tom that his trust in you is essential for you both to cope. And yes, the old days of research were daunting. There is so much easily attainable information on the internet for any concern, a fact I am constantly grateful for and know you are also.
    So glad he is able to enjoy his friends. This gives you both a break and support can come in a variety of ways.

    ReplyDelete
    Replies
    1. I'm so happy that he had a positive experience! He is already talking about next week's lunch :-)

      What would I do if he didn't trust me? It would change everything.

      I remember sneaking in something to snack on when I was working the stacks in the library. Food and drink were a no-no, but how was I supposed to keep up my energy without some nourishment :-)

      Delete
  6. I am glad he has you in his life.

    ReplyDelete
    Replies
    1. Thanks Gigi! I feel lucky too :-)

      Delete
  7. Thanks for sharing!
    That's great Jim's doc checked the B12, and D level.

    My daughter in law was the first one noticed that my husband F's short memory problems two years ago. My grandson said "papa is home", F said "what is 'papa is home' " last week. It seemed he could not process the information at that moment. F is 65. His mother had dementia for a few years before she died of stroke at age 67.

    I read somewhere that lithium would delay alzheimer, I take a small dosage(not therapeutic dosage for bipolar) everyday.

    ReplyDelete
    Replies
    1. Thanks for your comment. Another reader described it as the club no one wanted to belong to. I appears that each journey is unique. We do the best we can, knowing that our loved one needs us in a very different way than before.

      Delete
  8. I so appreciate your blog and the descriptions of your journey with Jim. We never know when this awful disease may strike a loved one, or ourselves. But the love and care of those around us make all the difference. Thank you. :-)

    ReplyDelete
    Replies
    1. Oh, you are so right about the love and care making all the difference! I know someone who's elderly mother had dementia. The adult child was either not able to grasp the reality, or perhaps did not know how to react. The response to the mother was not as kind as it should have been :-( It is such an adjustment for the individual as well as the family members. None of us are fully prepared, and sometimes it ends up being a "learn as you go" experience.

      Delete