I'm Fine

So this last month as been a rather trying one. It has had many, many ups and downs, highs and lows, valleys and mountains, deserts and rain forests.

I might be a great caretaker but I'm poor at taking care of myself, I'm good at hiding things, good at saying I'm fine, (just ask the people that I work with or that have known me for a while) even when I'm not; I've been saying it for so long that I think I sometimes say it without even realizing that I say it.

The whole problem being that I'm not fine. It took a major argument with a family member and saying some  very, very harsh, nasty words (the kind you wish you would could take back and would have never said) with a very dear, close friend to make me realize that I AM NOT FINE.

I much as I hate to admit anything, I am suffering from depression, anxiety, insomnia, insecurity, the why mes, why our family, why Greg, and on and on, I have become Greg's security blanket, his anchor, the person that he always has eyes on when we are out in public. But to be there for Greg, my parents and who ever else depends on me; I need to learn to take care of me because if I don't take care of me, I can't take care of Greg or anyone else. I'm no help to anyone.  So if you ask me how I am and I start unloading on you I apologize in advance.  And if I say I'm fine you have my permission to inquire further to see if I really am fine or not.

Help Be the "Fixer"

 

 The other morning as I stood in the shower a wave of panic come repeatedly over me, "Why God why, why us, why our family?????"  These thoughts ran over and over in my mind as I stood with the warm water, that had now turned cold, running over me. Understand that normally my time in the shower is spent letting my anxieties, cares and worries wash down the drain with the soapy water. It's my time to be care free and worry free. So why was this morning so different.

Why does God let things happen to some people/families and not to others? Is it because some of us have more faith, some of us can handle it better than others (definitely not me) or is it dumb luck or bad luck  or is it just because of the choices that we make in life. The choices that we make in life could account for some things, because of the free will that God gave us but I don't think that it accounts for everything. And it's a question I really don't have an answer for and probably never will. But it's one that has now stuck with me for days. I believe (you know how you're not sure if it's Him or your imagination) He told me  to have patience and endure. These two things for me are not easily done. 

As my friend Anne pointed out to me a few years ago, I'm a "fixer", I do not have patience to wait, I like to fix things and fix things now. So for me knowing that there is not a fix/cure for Alzheimer's and that I need to have patience and endure fills my days with dread, worry and anxiety. I would much rather crawl back in bed every morning and curl up next to Greg then go to work (basically because I don't particularly like my job  and I'm bored half the time) and because I would rather spend my days with Greg because I know that there will come a day when he will not know me or the rest of the family so there are so many, many things I want to do while we still can. But I also realize that part of my patience and endurance may be to be at my job and endure what is going on there. There are changes coming at my job before the end of the year so maybe that is part of God's wonderful plan. I don't know, but being the fixer that I am I wish that He would let me in on  the grand plan really soon, like yesterday.

So here's the fixer in me coming out, a few months ago I attended a women's conference. The evening was filled with love, laughter and connecting with old friends.  My take away from it was this "I am not the problem but I am the solution" (the fixer). So with that being said I'm going to ask you to help me be the fixer. This year I have started a group for the Alzheimer's walk on Saturday September 10, 2016. Would you walk or donate to "Greg's Memory Keepers" to help end Alzheimer's. We can all be the fixer to end this horrible disease so that other families do not have to suffer. Please, please consider helping. If you have questions please contact me (campnursezo@gmail.com) or go to alz.org/sd    
team name Greg's Memory Keepers. Please consider giving to the walk or come join in September (rain or shine) and walk to raise awareness about Alzheimer's. (Alzheimer's is estimated to be the number 3 killer disease in the US)

The Looooong Goodbye

Everyone Has A Story

As I sat in various waiting rooms at Mayo Clinic listening and watching people, I came to the conclusion that
              "Everyone has a story"
The stories vary in many ways but they all end the same, people are looking for answers to a medical problem and that is why they are at Mayo Clinic. Each story is as unique as the person telling it, some people are very patient while others are more demanding, some have doting family members, while others sit quietly by themselves, lost in their own thoughts. Some like Greg, Kiefer and I are there for only a few days, while others have been there for what seems like eternity (one couple we met had been there for 5 weeks and were very excited that they were scheduled to go home in a week.)

Monday the 8th Greg, Kiefer and I set out on an adventure to hopefully find some answers.  It was cold, snowy and very, very windy, roads were closed, we saw many vehicles in the ditch, including semis. What should have been a 4 hours drive straight east on I-90 turned into a 9 hour trip, getting us to Rochester in a very round about way,  2 hours of which were spent in a traffic jam. God's grace was more than sufficient in keeping us safe and in being able to reschedule Greg's appointment with the physician to Tuesday morning and all the rest of his appointments being able to be rescheduled as well. 

Greg was a trooper while he endured various appointments including an MRI, PET scan, lots of blood work, an EMG and a lumbar puncture (spinal tap). The results of the spinal tap will not be available for 4 to 5 weeks, so we are scheduled to return to Mayo in March. With the spinal tap they are looking for Tau Protein and "CSF markers" for Alzheimer's Disease.

The conclusion: the physician is fairly certain Greg has Early Onset Alzheimer's Disease with aphasia, the fluid from the spinal tap will give us the definite diagnosis. Aphasia is simply an impairment in language, that is why Greg "grasps and searches" for words and why he is so quite and hardly talks.

What it means: Greg will hopefully not have the behavioral  problems that are associated with Frontotemporal Dementia (FTD), his short term memory loss will continue to decline and yes he will forget his friends and family. Is it genetic????? We will probably never know, the only way to find out is genetic testing and without doing the genetic testing we will never know. We've been told that genetic Alzheimer's Disease is extremely rare. 

Is the correct diagnosis: we can only trust the physican that we saw and all the testing that was done. I did find out that the physician that Greg saw is "the best physician at Mayo to see for Alzheimer's" (this came from several nerses and staff members) and he deals espically with Early Onset Alzheimer's. But the only certain way is to do a brain autopsy after Greg passes away.

So for now we keep doing what we have been doing. Enjoying the days that we have together and trusting in the Great Physician for only He knows what will happen. 





 
 

Caregiving

 



 Being a caregiver; what does it mean?


It's like being on call 24 hours a day, 7 days a week, 365 days a year

It is repeating the same answer to the same question numerous time,
Being the chauffer, because Greg can't drive any more,
It's taking time off to go to appointments,
It's working full-time and then coming home and working more,
It's reminding Greg to do things,
It's doling out medications,
It's paying the bills,
Taking the car to get serviced, changing the oil, getting new tires(which I haven't had to do thanks to the boys giving them to us as a Christmas present),
It's making all the financial decisions, medical decisions, quality of live decisions and some day end of life decisions,
It's living with uncertainty,
It's learning patience,
It's trying not to resent people or the disease,
It's trying not to blame Greg for everything that has happened or is going on,
It's learning to live on less sleep,
It's learning to grieve the life that Greg and I once had and to mourn the loss of the Greg I once knew,
It's learning not to feel guilty because Greg has the disease and I don't,
It's learning not to bottle up my feelings (so if I let you have it someday, please forgive me),
It's worrying when Greg gets lost,
It's holding Greg's hand so he won't get lost,
It's learning to take care of me,
It's all of these things and more.......

BUT most of all it's  ........
TRUSTING in God and the challenges that He has set before me,  because He is there is the mist it all,
SPENDING time on my knees, PRAYING when the situation becomes so overwhelming that I feel like I'm sinking
THANKFULNESS  that Greg is still with us and that the boys are able to help with dad
ASKING for help when it's needed
KNOWING that I'm not in control, but God is and that is all I need to get through the day.