Wednesday, January 9, 2013

Heavy Heart

My grandfather passed away on Sunday after a six month battle with mesothelioma.  It's been heartbreaking to watch as my family struggles to do the right things, to determine what the "right things" are, and to realize how my grandparents have been struggling. 

My grandmother suffers from rheumatoid arthritis and has mobility challenges.  She's struggled with this for many years. She has also been experiencing a rapid decline in her memory.  This came on relatively quickly. In less than four years, she's gone from remembering EVERYTHING to a jumbled mess.  We used to joke that my grandmother kept a secret notebook where she had notes, because she could name off all of my friends, their husbands, how long they had been married, their kids names, when they were born, co-workers, etc.  She remembered every cold we had, every doctor's appointment, social appointment, lunch date or shopping trip we mentioned in passing.  Nowadays, I know she knows who I am, that I am married and have children.  Beyond, that I'm not totally sure.  She is aware that she is confused and forgetful and can be rather sneaky to cover it up.  If I had to classify it, I would say that she has increasing troubles forming long-term memories over the last four years.  But, it seems that recently ever her older memories are getting jumbled.  I can't put a medical diagnosis or a name to her troubles, since she's repeatedly refused doctor's appointments or evaluation.  I waver on whether or not it matters.  The odds are better that's not something that has an easy fix or a magic pill.  She's been leaving the house less and less over the last two years.  We think mobility is an issue. The home is a split level, so she's effectively held hostage by stairs out of the front door and down to the garage.  But, we also think it's partly because she just doesn't feel like it.

My grandfather was the more mobile of the two.  Up until this summer, he was pretty active...putzing around my uncle's ranch (We joked he was "playing farmer" and terrorizing the animals), checking out the latest offerings at the TSC, going to his coffee dates (at the local McDonald's with old buddies from his working days where they gossiped about current happenings at work and how things "used to be"), golfing occasionally and doing most of the errands and food shopping. We think they subsisted on primarily take-out and are probably keeping Papa John's in business during the tough economic times.  It's not ideal and I really objected to it at first, but as my mother said, "They are 80 years old; if eating take out makes them happy, what's the problem?"  I objected because it was unhealthy, but I guess at 80 years old, it's probably not going to do that much harm.  My grandfather had diabetes...though he used to "leave it at home" when he was traveling or dining out.  I think most of us figured he would eat himself (happily, I might add) to the grave and die of complications from his diabetes or congestive heart failure.  He was a man SERIOUS about his food.  I can easily conjure a mental image of him lined up at my grandmother's counter, piling food onto a plate or two, and then sitting at the table in his usual seat hunched over the plate and methodically destroying it. 

Hospice has been assisting in caring for my Grandfather as he wished to remain at home.  My Grandmother helped him when he needed it and when she could.  They repeatedly declined additional help from Hospice and told all of us that they were fine.  My mother flew out right after Christmas and discovered things were not "fine."  She decided to stay with them as my grandfather started declining rapidly and the nurses felt he didn't have much time left.

 My mother has shouldered most of the caregiver burden, not just for my ailing grandfather but also for my cantankerous grandmother.  I have had a very hard time accepting that my ability to help is limited to prayer and encouragement.  I am a DO-er. My Love Languages are Gifts and Acts of Service.  As you can imagine, I've had a very hard time accepting that I am in Germany and unable to assist.  I've agonized over the situation, studied SPACE A flights, looked into furnished condos near them, and rental cars trying to find some sensible way of offering assistance. In the end, it always came back to my kids.  I have three small kids and going to assist my mother and grandparents would be devastating on them, regardless of how I handled it.  Leaving them in Germany with Soldier for an indefinite amount of time would break my heart and theirs. Not only would they miss Mommy but their tiny lives would be upside down since they'd be plunked into daycare while he was at work.  Bringing them with me would have involved pulling them from school, finding some kind of daycare or part time preschool there so I had some respite care and they had a break from my grandparents home, living in a hotel and having our family split for the next six months until Soldier PCS'd from Germany.  And, though I've struggled to put a price on caring for family, this would not be a cheap option -- flights for four, plus a rental car and temporary lodging for six months?  In the end, despite a week of agonizing over this and looking for ways to manipulate the situation, I could not inflict that much upheaval on my children.  It's really uncomfortable to feel like I am choosing between the two groups and I pray I have made the right choices in this process. 

My grandfather's memorial is today.  I've read the obituary and it seems like it's written about someone else, except that the facts are familiar.  I think the truth will become real for me when Soldier and I arrive in Leavenworth this summer and don't see him sitting in his chair or standing at the front window as we drive up.  He was always the first out of the house to welcome us when we visited, as kids or adults.  For now, I am relieved to know that he is not suffering anymore.  Frankly, the descriptions I've read of how mesothelioma attacks the body are pretty horrifying.  The situation is much easier to carry on my heart knowing that he is at peace and that my mother is not alone caring for him.

This moment for remembering him now seems like a small pause in the storm before the next thing comes: figuring out whether or not my grandmother can continue to live independently.  In my heart, I believe she probably can't.  I also believe that she may just prefer to sit in her chair and wait for her turn. I also believe that she will not leave her home without a fight. My grief is also for her, for the fact that she has come to a point where we are discussing "what to do about grandma" and at a loss for a solution that she might be open to - beyond leaving her to sit in her chair indefinitely as she seems to want.  There are plenty of options for her; the trouble is finding one that she might agree to.

We will arrive in Leavenworth in about six months.  My previous visions of that time have fallen away as we've started to grasp the severity of the situation.  Clearly, I was unrealistic to think that she simply needed motivation (ME + Adorable Great Grandbabies!) to leave the house and to make some positive changes.   At this point, I'm not certain what will await us or how I can best serve my family when I arrive.  For now, I am laughing over good memories of my grandfather, grateful to know he is no longer suffering, and holding on to hope that as the stress of my grandfather's illness and passing fade, my grandmother's symptoms will ease and she will regain some clarity and motivation. 

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