Chris,

That's a tough question. I have decided, at least for now, that the stress of more diagnostic tests is not worth finding out more "probable" kinds of information. It wouldn't make any difference in what we are doing, either with medicine or lifestyle, because we are doing every precaution we know and living life as though Hu's days are short.

So the questions I suggest are: What information would make a difference to you? To what you are doing for him? Are you confident you understand his needs as he is now, given some unknown form of brain/thinking/acting/feeling problem? Even with a clearer diagnosis you will still have questions that can't

Hi all,

It's been a while since I've posted, but wanted to get your input on a question I've been tossing around.

Last week I had my annual physical, and while at the clinic, I visited with the doctor about Roger's situation. As you recall, my husband had surgery for a shunt in May due to normal pressure hydrocephalus. But, his condition has not improved that much since his surgery, and his many, bizarre symptoms continue.

Our doctor and I talked about the possibility of going to Mayo in the hope of finding a definite diagnosis. Roger's symptoms are so many and so varied, that he has everyone stumped. What is your thinking? Should we go to Mayo? Will a diagnosis (if they're able to determine one) really change anything? Am I wasting our time and money, or is it a good thing? I would value your opinions.

Thanks, Chris

quote:

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Originally posted by Judy:
...and then I wonder, what do families do when they've had every test almost, and still nothing conclusive for a doctor to call a diagnosis..and we walk around at times with wide eyes knowing this person we know so well would never react that way.umm. Its that gut knowing. ...

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Welcome back to us, Judy...

As I see it, Alzheimer's is really just another hard to define disease when it comes to diagnosis, especially in the early stages. If your "gut" is telling you something, pay heed and keep pursuing until you have the answer. This may take travel and this may take time, but in the end, your husband and you will benefit by early and appropriate treatment. Good luck and please keep us posted with what's happening. You are not alone on this journey.

Warmest regards...Joan Marie

"Dream as though you will live forever. Love as though you will die tomorrow."

Mary Morken...

What a great idea to "visualize" your thoughts that way! Keep on keeping on!

Joan Marie

"Dream as though you will live forever. Love as though you will die tomorrow."

Thought of some more pictures:

Imagine the brain unraveling like a sweater and God holding each length in trust, to be restored in heaven. Imagine caring for the remnants and the human soul and spirit still on earth for a short time, in light of eternity.

Imagine the brain like swiss cheese, aging with grace, to someday in heaven be a richer taste for having gone through this process.

Imagine aging and decline like a wine going through aging for a future finer wine.

Imagine aging like a sunset with the promise of a sunrise ahead.

Imagine the physical getting weaker and the spirit (as only God knows him) getting stronger.

Imagine thinking clearly and objectively to understand Hu's needs and desires each day, to make my love wise and strong.

I still need more analogies, pictures...they are good for me. -Mary

Thanks for your responses, Judy, Edyth Ann, and Chris. Very helpful. Amazing how just hearing others are on the same journey helps me feel more rational and accepting of this road. I'm going to try to think up some helpful pictures to use my imagination to prepare for more grieving in the future. Here are a few of my ideas but I need more, of how I want to feel and think and act:

Imagine:

Expecting to see new declines, taking them in stride, accepting them as the next step, watching for the silver lining in the new cloud, observing to understand his new needs, carrying the new sorrow with tenderness, feeling strong and full of courage for the new challenge, watching for comforts on this new turn in the road, feeling confident I am called to this role, feeling a part of a troop of all those going through a new grief today, keeping open to joys in the midst of the valley, accepting and expressing all my feelings in a safe place/person, praying and sensing God's shepherding, watching for new insights and inspirations to come.

Those aren't vivid enough or sensorial enough to reach me when I'm hurting. Maybe these will be more effective then:

Imagine:

Receiving a new wound and tending it quickly.
Growing new skin over it.

Peeling an onion one layer at a time and letting tears come in private.
Growing a new layer of human experience, deepening, enriching in the milk of human kindness.

Traveling a valley with Hu to help him finish his life, to finish for the sake of finishing when it doesn't make sense (this was our watchword when he was completing his PhD thesis).

Carrying a cross up a hill keeping focus on promise of a reward of joy. (I'm looking forward to Mel Gibson's movie coming out.)

I'm going to keep working on this...Mary

Hello Mary
I'm sort of lurking today. Even without a diagnosis, my husband's situation is such that there are times when 'all is well'..then something happens and I feel like I've been socked in the stomach. At least right now we're again on a pathway to hopefully get some kind of diagnosis..I watched The Forgetting and found it helpful..the forum afterward was helpful.and then I wonder, what do families do when they've had every test almost, and still nothing conclusive for a doctor to call a diagnosis..and we walk around at times with wide eyes knowing this person we know so well would never react that way.umm. Its that gut knowing.
Mary, your post helps me know that even if we prepare and logically deal with this reality,its not always that easy especially when we are tired. The posts of your 'journey' with Hu have helped me in understanding how to try to manage through some public things.
Thank you for sharing these feelings today. I sure have them too and wonder at low times about the same things you mention.
Can't say it enough but this place is like a refuge and provides something almost tangible, like a hand rail on stairs to hold.

Thanks to all of you.

This prolong grief is felt by all CGs and family of those with Alz. or other lengthy and terminal illness. There has been some studies on the effects of this prolong and repeating grief cycle. I am afraid that there is no way to avoid it but seeking out a grief support group or a therapist that is experienced in grief therapy maybe the most helpful. try calling your local Hospice and ask about local support groups or therapist in your area.

Edyth Ann aka Bubblehead aka Queen Bubble
AOL IM EdythAnn12
edythann@netzero.net

Hi Mary,

I read your message this morning and just had to respond, as I feel we're in similar situations. My husband is 59 and I am 54; far too young for this to be happening to us, huh?

I can empathize with your description of feeling destroyed each time you see another step backward -- it is just so heart wrenching. I'm not sure if there is any magic bullet when it comes to dealing with the pain. For me, the turning point was downright, gut level acceptance of the situation. Roger has not been diagnosed with Alzheimer's, and had shunt surgery for normal pressure hydrocephalus last May, but I'm more than sure he's suffering with Alzheimer's, too.

For 24 years I was a daycare provider, and, as you can imagine, you have to deal with some less-than-enjoyable experiences in that profession. I often explained my situation by saying the real Chris couldn't handle the situation at hand, so the "other Chris" had to take over. I think I am using that technique now, as the real Chris would probably cave. I always struggled with poor sleeping habits, and for the past couple of years I've been using Paxil, and that has helped me incredibly. I use just the smallest dosage possible, but enough to help me get to sleep, and with sleep, I can cope.

About the skis....maybe the store could just happen to be out of the size that works for him, and suggest that you delay the purchase until next fall or winter. I've learned that honesty is not always the best route when dealing with this situation. Of course our married relationship has been based on truth, and nothing but the truth, but the rules have changed, and we have to re-do our thinking to meet the needs of the situation. No, it's not fun...

Good luck to you, Mary, as you struggle with the demands of each new day.

Love, Chris