The wrong kind of milestone

There are happy milestones and sad milestones, some you wait impatiently for and some you hope and pray you never experience.  Dad is experiencing many of the latter and by association we are too.  Today I was reminded of this yet again. When my cell phone rang this afternoon, I didn’t expect it to be dad.  He very rarely uses the phone anymore.  Unfortunately, when he does, he calls my cell.  I say unfortunately because I get really lousy reception when I’m home and this afternoon I was at home.  When he called, I could hear him but he couldn’t hear me very well.  This is frustrating under the best of circumstances but today it was particularly so.  I could hear the urgency in his voice.  The more I said, ‘Dad, I can hear you’ and heard him respond, “hello, Sarah?” the more the urgency escalated.  I thought I could hear tears too. Growing up I probably heard or saw dad cry, at most, half a dozen times, so it’s still a bit startling when this happens.  By the time we had a good connection, I was sure he was crying.  After spending some time talking with him, I was both saddened and relieved at the reason for his call.  My mom’s birthday is coming up.  He remembered she was having one but couldn’t remember when it was.  He was afraid he’d missed it.  Did you know you don’t just feel pain but you can hear it too?  I heard it today in his voice.  The pain of thinking he might have missed such an important thing to him.  The pain of realizing he didn’t know if he had.  The pain of worry he’d forget between now and when it actually happens.  The pain of wanting so badly to do something special for her but not knowing how to accomplish that anymore.  Dad has always loved my mom.  Really, really loved my mom. He thinks she hung the moon.  He’s incredibly grateful to her and for her.  He’d be completely lost without her and he still does know that.  When he called today, I knew this was all part of the ‘panic’ I could hear.  He thought he’d missed her special day and he knows he may not have another opportunity to celebrate it with her.

“Dad, you’re good, you’ve got time.  Do you want me to help you remember?”

“I have time?  Yes, help me remember.”

I could feel his relief through the phone. It never crossed my mind that he would need help remembering or help implementing a plan to make her day special.  This is one milestone I could have done without but it’s here so I’ll be thankful for the call that alerted me to it.

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Posted in Aging Parent, Care taking, child, children, Family, happiness, LBD, Lewy Body Dementia, marriage, parenthood, reflective, Uncategorized | Leave a comment

Restructuring

I’m doing a bit of restructuring with this blog.  I’ve actually started a new one and will only use this one for what it has become, a place to talk about dad’s journey and update those who like to check in periodically.  As winter closes in and mom and dad move into their new place, I am sure things will be challenging for dad, and us, at times.  It really is therapeutic for me to ‘write it out’ and I’ve been encouraged by peoples thoughts and prayers, especially for dad, but for us as family too.  My dad is a super special man and it’s my desire to honor him through this blog.  I chose to change the blog look also.  I felt these trees represented my dad’s depth, strength and wisdom.

Posted in Aging Parent, Care taking, child, Family, LBD, Lewy Body Dementia, parenthood, positive attitude, reflective, Spiritual | Leave a comment

Reflections

It’s been a while since I’ve written anything on this blog.  I’ve written dozens of posts in my head but they just don’t ever seem to make it onto the blog!  🙂  A few days ago, I spent a bit of the afternoon with my dad.  It was a beautiful, end of summer day.  As I sat on a rock outside his house, soaking in the heat of the sun, I quietly watched him.  So many, many emotions flood through me when I spend any amount of time with dad.  As a girl growing up, dad was very tall and slender with broad shoulders.  I always thought of him as a big man.  He was as strong as an ox and in my view there wasn’t a thing in the world he couldn’t do.  I don’t remember him being very talkative, not too quiet, but he wasn’t chatty.  He had, and still has, although not nearly as often, the zaniest sense of humor!  Somehow, he always managed to make me believe I was his favorite.  I know siblings of mine felt that way also, so he must have done a good job of making us feel loved.  For a long time, my universe centered around my dad.  He was larger than life to me and I loved him more than anyone in the world.

The years have not been kind to dad.  As I watched him, I marveled at how much a body can change.  Dad’s face is deeply etched with lines.  Many are from hours and hours of working outside and some are from all the laughter he once was filled with but most are from the years of pain and nights on end of no sleep.  He sits in the sun and picks at weeds with a tool he’s fashioned, at one time or another, for just such a task.  Dad was a problem solver.  He still tries to be a problem solver but for the first time in my life, I’m witnessing my dad not succeed.  Too many things are just too much for him anymore.  Dad was very handy and could invent most anything he needed to fix a problem or make a task go better.  Usually he’d fashion his inventions out of materials he had laying around.  Money was always tight but he never seemed to be concerned about that.  Money never had a grip on him.  If he had it, he’d just as soon pass it on to someone he thought had more of a need than he did.  If he didn’t have it, he’d go back to the drawing board and invent whatever it was he needed, out of whatever it was he had laying around.

He sits now and watches as I try to prop up mom’s apple tree, which has so many apples on one limb it’s bending in half.  That he sits and watches while I do this is a deep jolt inside me.  Once upon a time, there would have been no way he’d sit while I problem solved or wrestled with tree branches.  At the oddest moments, the pain can be searing.  Why and how did it come to this,  I wonder for the umpteenth time.

When he stands, his once 6’2″, straight as an arrow, ex-Marine Corp body is stooped and ‘S’ shaped.  He is often shorter than I am.  At times, he can force himself ‘upright’ and reach the height of 5’7ish”.  Today, 5’7″ is impossible.  He sits and soaks in the August sun and comments on how fine Alaska is in August.  “Can’t be beat.”  “So glad we came here.”  “Alaska’s a good land”.  This day, I can almost see the cords that bind him to this land he loves so much.

I’ve been with dad through many of his most wretched physical trials.  I’ve seen suffering deeper than I ever knew existed.  I’ve experienced a crisis of my faith, my belief system, in part, because of watching him go through this terrible suffering and I’ve largely come out the other side of this crisis, in part, by watching dad’s own faith.   I’ve never, even in his darkest, most horrific times, heard dad blame God, beg Him to make it stop, demand that He fix it.  And I know it’s not that he’s given up faith in God’s ability.  I know he has questions, I’ve heard him voice them but at the end of the day dad’s thankful, grateful, hopeful and he comes to God in gratitude.  I’ve stood with dad in the darkest, darkest times, harboring vast amounts of anger at God and listened as Dad’s thanked Him: for His presence, His Peace, His availability, His strength, His Grace.  And I’ve often not understood a word.

But watching dad navigate the desolation of his health, I’ve learned a few things.  It’s not God’s fault.  It’s not Dad’s fault.  Bad things happen to good people and, yes, that’s very hard to accept sometimes.  As I’ve allowed my heart to open to the understanding that God isn’t a ‘sugar daddy’ whose only role is to dispense the good things I like, want, need or hope for, I’ve begun to see that though I DO NOT understand why dad is suffering…God hasn’t ordered it, He doesn’t rejoice in it and He hasn’t abandoned him or me.

Proof, you say.  Well, one undeniable proof is Dad’s still soldiering on.  He’s able to be plunged back into intense suffering over and over and over and over and over.  You argue, that’s not proof because he has no choice.  Yes, he does.  There are many who have chosen to end it all, to the great sorrow of family and friends who were denied their chance to say goodbye or even make wrong things right.  Dad keeps keeping on because of his faith.  Because he believes in Gods’ presence, feels His peace, knows first hand He’s available, knows He’s his strength, knows His Grace.

As I sit and watch dad on this glorious August afternoon, I can’t help but wonder how much longer dad has to endure this suffering.  I use to get all twisted up inside thinking about dad’s death and feel like I just would not be able to handle it.  Funny how perspectives change.  I can honestly say from walking through this journey with dad, there are things worse than death.  I’ll miss him dreadfully but that won’t be ‘new’.  I miss him now.  I am convinced that dad will be trading his sickness and pain for joy, health and peace and for that, I can’t wait.

He stands up and says, I love being with you, Sarah, but I think I’m going to try to sleep for a bit.  When I hug him there is no recognition of ‘hugging my dad’. It’s like hugging someone else’s body and calling it my dad’s.  I walk away from him marveling at his strength, his endurance, his perseverance, his faith.  If I can cultivate half of what dad has, I’ll be so blessed.  I am so blessed already, so fortunate, to have had this man to love me and guide me throughout my life.  He’s the strongest man I’ve ever known.

Posted in Aging Parent, Care taking, child, children, Family, happiness, LBD, Lewy Body Dementia, parenthood, positive attitude, reflective, Spiritual | 3 Comments

Love in little ways…

Love in little ways….

This was written by our daughter, who spent 2 months in S. Africa and Zambia this summer.  She has a blog where she’s blogging about the experiences she had while gone.  This post was just begging to be shared…

Posted in child, children, Family, happiness, kids, positive attitude, reflective, Spiritual, teenager | Leave a comment

Living and Loving through LBD

2/15/2012

Actually, I think the title is incorrect because you don’t live through LBD.  You die from it or from complications of it.  We, his caregivers, have to live through it but right now I’m asking myself how?  How do we live through this and come out healthy, happy and ‘okay’ on the other side.  Actually, that isn’t quite correct either because what I’m REALLY wondering is how does Mom do this?  I find it hard.  I find it tiring.  I find it hurtful.  I find it frustrating.  I find it confusing.  I find it depressing.  I find it exhausting.  I find it overwhelming.  If I find it all these things.  What must my mom be going through?  I don’t know how you watch someone who’s been constantly by your side for 49 years slowly, painfully die?  Slowly lose the functions of brain and body which you’ve relied on for half a century and which everyone else takes for granted?  How do you switch from spouse to caregiver?  Who takes care of the caregiver?  When is there time for the caregiver?  I find all this very troubling.  It’s hard to see a problem and have no answers to it.  The dynamics of a 50 year relationship are complex and interesting indeed.  My parents didn’t stay married because ‘it was the right thing to do’.  They stayed married for the same reason they got married: they couldn’t imagine living without the love and companionship of the other.  They’re both totally tied to the other in ways that are impossible to see or understand.  The shifts that are happening are gut-wrenching to witness.  He is becoming so very dependent on her-for everything, while she, by necessity, is having to become independent of him.   I hear ‘arguments’ for different ways of caring for the caregiver.  This way is better than that way.  No, that way is better than the other.  It all seems so simple.  You just need to do this, or do that, or do the other.  But it isn’t so simple or easy.  Nothing about any of this is simple or easy.  There isn’t any magic pill, not one to stop his legs running or one to stop his body spasms or to keep his mental clarity.  There is no magic pill to easily care for him either.  I’m watching mom doing the absolute best she can but the question I’m beginning to ask myself is how long can she DO this?  My help is a drop in the ocean.  I’m not negating it’s importance.  I totally know it’s vitally important.  I just don’t think it’s enough and I can’t figure out how to do more or how anyone else could do anything more.  Some things can’t be done by just anyone and some times there really is nothing to ‘do’.  It’s just her being there and him knowing that she is.  One aspect is the constant knowing that things are bad and they’re not going to get any better.  It’s wearing to know that nothing you do brings help or comfort.  It’s wearing to watch as the days and nights tick by without any sleep for him.  I don’t live with dad and still his troubles invade my dreams, interrupting my sleep.  I wake with a jolt.  Is he alright?  Of course he’s not alright, he’s never alright.  Is it really horrible tonight?  What if he dies?  And then I ask myself and this would be bad why?  I’ll feel relief.  I’ll feel thankfulness.  I’ll feel loss… Such loss.  If Dad could chose, he states he’d definitely chose to go now.  There’s one thing I totally believe.  I 100% believe that his future is bright.  I believe the moment his earthly life stops, his eternal life will start and it will be more wonderful than anything he’s experienced in this life by far.  For that, I can hardly wait.  I wish he could skip all this suffering and get right to the good part!

It’s been awhile since I last blogged.  The above was written in mid-February.  At the time, these struggles felt too ‘personal’ to share.  It’s a thing I’ve got to get over if I ever want to be able to encourage those who are walking through similar circumstances and feeling so alone.  Also, for some time it felt like there just wasn’t anything good to say so it’d be better to say nothing at all.  You’ve heard the saying…if you don’t have anything good to say, don’t say anything at all.

In the last few weeks Dad has spent less time with me and more time outside enjoying the spring weather or just being close to mom.  He likes less and less to be away from her.  Right now there is no crisis.  He isn’t sleeping well at night but he hasn’t done that in years and years so there’s nothing ‘new’ there.  It’s spring here so the fear that he may wander out at night, without being properly dressed, is greatly reduced.  Too, he has less strength to get out and about and he knows this.  He can’t just put on his coat and go do an all day project.  He gets easily confused.  He can’t figure out things that use to take no figuring at all.  These things frustrate him. They depress him.  They make him angry.

One of the things I have the hardest time getting use to is not being able to ‘believe’ what he says.  He tells me about a situation and it all sounds so believable.  Like, Mom turned her taxes in and they told her they’d do them and then they called and told her they can’t.  Oh, why?  They don’t have time.  That’s weird but believable.  He’s angry.  He doesn’t want her to use them again.  And then I ask mom about it.  No, they’re doing them, they just can’t do them until next week.  Oh.  So there isn’t a problem?  No, no problem.  Wow.  How does a  delay get turned into a refusal?  I must remember this.  I can have a perfectly intelligent conversation with my dad but that still doesn’t mean the information I’m receiving is correct.  I must remember this…I must remember this.  It is so far out of my life experiences with this man.  It is painful.  Like the pain of watching his ‘filter’ slip away.  Sometimes the most inappropriate things come out of his mouth.  Oh boy, you didn’t just say that…did you?  What in the world?  Why does this happen?  Give me back my dad!  What have you done with him?  And then…here he is again.  Thank God!  I hope he can stay awhile but that’s the thing with ‘Lewy’.  You never know just when he’s going to show up or just how long he’s going to stay.

Posted in Aging Parent, Care taking, child, Family, LBD, Lewy Body Dementia, marriage, mental habits, parenthood, positive attitude, reflective, Spiritual, Uncategorized | 4 Comments

More on Dad

I had no idea, when I started this blog, that I’d be writing about my dad and his journey through LBD.  In some ways it feels disloyal, and being a pretty private person, it feels like I shouldn’t be telling whoever may be reading this, details of his struggle or my heartbreak in walking this road beside him.  In another way, writing is therapeutic for me and it helps to ‘write it out’.  Also, I think that if anything in dad’s journey can help any who come behind, it would be worth it.  The world of LBD is full of uncertainty and second guessing.  It feels very lonely sometimes.  There are few doctors who really understand the differences in an LBD patient versus an ordinary Alzheimer’s or dementia patient.  Then too, there are so many, many variables with dad and all the other physical ‘issues’ he has.  It’s so very hard to sort it all out.  What is what?  What is causing what?  Writing on a blog certainly isn’t going to clear up any of these problems but I can’t begin to tell you how comforting all the thoughts and prayers, that came from my last post, were.  So, I will continue to ‘write it out’ and thank all of you, from the bottom of my heart, for any thoughts and prayers you send dad’s way.

Since I wrote Heart Broken, we’ve had to reevaluate the way we were helping dad.  It began as helping him through augmentation but soon became apparent that things weren’t going to go back to normal once we got through that time.  Since before Christmas, there’s been no ‘normal’ in dad’s world.  Every day is different.  Lots of times every 1/2 hour was different.  We were all wearing out.  Our families were wearing out but, most especially, mom was wearing out.  THAT would be a total, complete disaster.  I can’t even begin to imagine what would happen if mom collapsed.  Something different needed to be tried.  So, on Wednesday, we started bringing dad to our house for the day.  So far, it seems to be going okay.  He comes and can watch TV, sleep, take a bath (which helps so much with the tension) sometimes he takes 4, 5, 6, in a day.

It’s a painful experience when the parent-child relationship shifts.  I can’t even begin to put into words what my dad’s been to me.    No parent is perfect but I was a grown woman, with children of my own, before I was able to see that my dad wasn’t.  He was such a great dad for me.  He could fix any problem, fix any thing.  He was a jack of all trades.  There wasn’t anything he couldn’t do.  It’s more than hard to watch all those abilities disappear.  To watch him struggle to put on a shirt and button it up.  To watch him struggle through the process of washing dishes.  To watch him labor over my broken cheese slicer, trying to restring it.  Dad would have made a fantastic engineer.  You can see his engineering mind working so hard but not quite reaching what it’s striving for.  It seems so wrong.  It IS so wrong!  To have him engaged and active in a conversation one hour and confused about a simple thing the following hour.  These are all things that are hard to accept, hard to ‘get use to’.  Hard to not weep about.  I’ve done a lot of weeping this past month.  I’m sure I’ll do a lot more.  It isn’t easy to adjust to the role of problem solver and caretaker for your parent.  All your growing up years these were the people you relied upon to problem solve and care for you.  These are all things that are shifting in my world, in his world.  I wasn’t ready for this.  Who ever is?

I’m thankful that, for now it seems, we’ve been able to get the out of control thrashing managed.  His body still moves, his legs still jerk but that horrible, horrible thrashing seems to be gone for now.  This is a major victory although I’m smart enough to know that we certainly haven’t won the war.  I’m just grateful for whatever reprieve we get on that front.  So, although things are certainly not what I would wish in regards to dad’s health, they haven’t been as bad these past days either.  I doubt dad would agree with me.  He’s the one who doesn’t ever get a complete break.  Always, there’s some little thing he has to be dealing with but in the overall scope of things, I’d give these past few days a B.

Posted in Aging Parent, Care taking, child, children, Family, LBD, Lewy Body Dementia, parenthood, reflective, Uncategorized | 1 Comment

Heart Broken

I sit here, 4:30 am, tears streaming down my face, nothing I can do, nothing anyone can do, listening as my dad thrashes and throws himself around in his bed.  Hours and hours of the same.  When will this stop?  How can this continue?  A break please, just some sleep for him.  Is that too much to ask?  A little sleep?  Peace for him.  Is that too much to ask?  Just a little peace in his body.  When will this end?  HOW will this end?  There doesn’t seem to be any easy way out of this.  It’s heartbreaking to realize that I feel a sense of victory when I haven’t heard his movement for 60 seconds. When 10 minutes have gone by and he hasn’t gotten up yet again, I feel hopeful.  Happy for 10 minutes of blessed sleep.  How can that be?  How completely wretched to be down to feeling victory for 60 seconds of no movement or 10 minutes of some sort of sleep.  I’m listening, trying to decipher the sounds.  Is he getting up?  If so, I’ve gotta beat him by being to the bedside before he’s actually standing, otherwise, he stands and begins to fall asleep, his body collapsing as he does.  He is starved for sleep but he NEEDS to move.  The desire to get away from this terrible tension is greater than his utter exhaustion.  He can’t handle the intense feeling of tension anymore, somehow, someway he MUST get away from it and so he staggers, pitching and leaning, trying his best to get away.  I’m there.  Turning him, helping him, directing him back to the bed where he lays down yet again so the whole cursed process can begin over.  Legs churning, arms flailing, body thrashing….over and over and over.  Hour after agonizing hour.  What is this damn disease?  For I feel as though I’m witnessing hell.

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