Walking from Earth to Eternity

The last few weeks have been a roller coaster. It began with a trip to the ER just to check Bob out after he had lost consciousness for a unknown length of time. He was very confused and disoriented when he woke up, so fearing a stroke I called 911 and had him sent to the VA hospital. While there he was tested for a UTI (urinary tract infection). Evidently UTI's can be responsible for the confusion. It was confirmed that he had one and we had a choice to treat it at home or admit him "just in case" it flared up. With MSA we have to be careful regarding a UTI affecting the kidney so we were prudent and elected to be admitted.

Remember that slippery slope I told you all about a few months ago? Well it's getting steeper and more slippery.

Bob has been in the VA Hospital for almost two weeks and while there he has been under the microscope of several Specialists, MD's and Practitioners. All of these have opinions and few of them have had to deal with MSA. I feel like I have been trying to fish with my bare hands trying to meet each one and determine what it is that Bob truly needs and who will be providing it. At this point the UTI is gone, His BP is evening out (sort of) he's gained weight and he is bored (no wifi). We have determined, and he has agreed, that he needs a feeding tube to supplement his nutrition as he was burning more calories eating than he was gaining and was becoming malnourished, This tube will not prevent him from enjoying food and can be hidden with clothing. We have decided on this so that we can have as healthy and active a Bob as possible.

We have hit a snag though as his physiology and his issues with anesthesia have proved to be too difficult for our local VA and they are working on finding someone who can do the procedure.  This will mean a transfer to another facility. I'm feeling confident that it will all be resolved as I am comforted by his current Primary care Dr and his Neurologist  who are very much invested in being Bob's advocates.

And so we wait.

And the title of this post?

Last Sunday this was a phrase I saw, I can't remember the context, a song, a reading, it doesn't matter, it struck me as this is what we are doing. Bob has started his walk from this earth to eternity, into God's glorious presence. We are confident in the Salvation that was bought and paid for by Jesus Christ. Bob has always anticipated what his life is going to be like when he gets there. He has a million questions. He believes he has been given some idea as to what his mission will be. I have been personally reassured that the Lord is looking forward to taking Bob into his care. Eternity - what a most glorious destiny, everlasting life in the presence of God! We are told that we can not even imagine it

1Cr 2:9

But as it is written, Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him.

This is an amazing promise! This is what Bob is walking towards and I will cheer him on. Is this not what we believe that we were destined for? Is this not what we were accepting when we chose to follow God? Is this destination not the original point of our being created in the first place - to be in a relationship with the God of the ...Everything?

This is the prize, the goal we are all striving for, to be done with sin and it's impact on our lives, to be in an amazing and perfect relationship with God as we were intended to be.

But the journey is hard, the road is difficult even treacherous. We are weary and scared, grieving and clinging to one another. Let's face it this part of the story sucks, big time! We aren't "Giving in" as some may see it. We just are really clear that we will be parted so much sooner than we would choose, if it were up to us. But we will keep our eyes focused on Jesus, we will endeavor to make this walk as honestly and faithfully as we can. We won't hide the pain or the tears but we will also always give praise to God and share our story of His abundant love in our lives.

So...dying sucks, eternity with God doesn't, and that's how we view it as we walk from earth to eternity.

"Letter to patients with chronic disease" MUST READ!

I read this after it was posted on one of the MSA facebook pages I subscribe to and I thought it was worthy enough to pass along to all of you.

http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

I found a lot of good insight that might help me deal with any and all new professionals that I come into contact as Bob's disease progresses and perhaps it ill help those contacts be more successful.

Susan

Not your ordinary Hospital Bed

As things progress in this disease I endeavor to be proactive and prepare for things ahead of time. Bob's walking is getting more and more unreliable and we have added the option -"Do you want to walk or ride" as to how he gets from bed to chair these days.

So I have started making room for a wheelchair. Last summer after his gall bladder surgery and the resulting problems with middle of the night aspiration we obtained a hospital bed. Not wanting to move into another room - and we only have a one bedroom apartment- I placed a twin bed next to it. Unfortunately there was very little if any room left to maneuver.

My solution? I found out that there could be room to put a trundle bed under the hospital bed. So I worked out a floor plan. I had to consider several things. first of all is the position that he tends to sleep in, he would want to be facing me so he could see me (and for spooning potential). Then there is the placement of the TV and if he could see it. The problem here is that he has very limited movement so we have to work with in his parameters, and then there is the space available along each wall and how all the other furniture fits.

The last piece of the puzzle is how we want our bedroom to feel. We don't want it to be a "Sick room" or "Hospital room" we want OUR bedroom, our sanctuary, our lazy day hangout place. Bob wants to keep as much of the bedroom furniture, that we purchased 32 years ago, as possible.

So here is my solution,

 We placed our original headboard up against the wall and then pushed the Hospital bed sideways up against it - kind of looks like a day bed

 Still have our hutch (with knicknacks and photos) next to the bed is the "Bob station" and we have plenty of space for any kind of wheelchair to come into the room

 The trundle bed revealed. The hospital bed has up to 15 inches of clearance. Trundle bed frames are 4" to 6" and mattresses can be 4" to 8"

 Trundle bed pulled out

 And popped up into place

 Sleeping together side by side for 34 years. The trundle bed can also be moved out of the way to allow access if I need it during the night. If he gets to moving around too much with the tremors I can protect him with the bedrails and I can get some sleep without being shaken all night.

 The Bob station is placed at the head of the bed and has all the things I need for the morning and evening routines - keeps me from running around collecting everything and a surface to work on

 Lotions, potions, powder and towels, paper, tissue and wipes. Timers, gloves, lots of love, Gregorian chants at night. Blood pressure cuff, stehescope, Scissors, toothbrushes and cups everything we need for the night.

 Bulky items are under the table - Now you see them

Now you don't

 

We now have a bedroom that is now wheelchair friendly, has all the amenities I need for his care and our comfort, is still our sanctuary and I actually gained some storage spots I didn't have before.

One more thing :

Marlin our 19yr old cat was quite distressed that his "Spot" had disappeared. For those of you who follow "The Big Bang Theroy" show, he was very Sheldon Cooper about it. After a week I think he has finally found his "Spot" and now the arrangement is officially Marlin approved and we can all heave a sigh of relief.

My Veteran- Happy Memorial Day

USS Elliot - Bob's Ship
 

Today we will be going to a church friend's house for a picnic - maybe

They will see him freshly bathed, a haircut and beard trimmed, polo shirt, crisp board shorts and boat shoes.

They will also see the bright red scooter with his pirate flag, the stooped posture, masked face and barely there voice.

 

I see a young man on the bow of a destroyer in full dress uniform with a grin as wide as the oceans as he gazes down at his bride on the dock.

I see him at the helm of his sailboat screaming across the Bay

Thank you to all the veterans that have made our lives possible.
Have a happy Memorial Day