Roller coaster went back up…

So…after a couple of angry and uncertain days, we all agreed.  He “officially” put me in charge of creating a schedule of care/visits and “breaks” so that we all know what to expect and can make arrangements or “trade” if needed. This will help schedule trips, appointments for everyone and keep extra caregiver costs at a minimum. He has an appointment with the girls counselor tomorrow. We’ve all agreed that albeit uncomfortable to adjust to adding a “stranger” to our family, we need help. I proposed that it would ease family tension and prevent him getting angry and complaining only to or about us. Change his atmosphere and give him privacy to make a phone call or visit with someone. 

He was SO relieved once he calmed down and accepted the whole picture. He was in charge, living, loving, diplomatic, “cocky” and happy.  It was an UNcomfortable and complete 180. In fact, HE insisted we spend the weekend together (just the 2 of us) and helped me manage/arrange getting the kids and dogs squared away for the weekend and we took advantage of our free room and meals at the casino in Tunica, MS. The setup is such that we never have to leave the premises. So we can play, eat, rest, get to our own bathroom and there’s everything in a gift shop to snack or get goods when needed! It’s an easy get away for us that we both enjoy about twice a year.  This was hard for me this time since my wounds from my verbal lashing and confrontation last Monday were still fresh. I didn’t expect an apology…he deserves to rant.  But I was pushed REALLY far away by his rant. The only incident over the weekend trip was when he had a “controlled” fall in the bathroom.  It took a good 30 minutes with a pillow, a slide sheet, and towel to get him sitting up and on the foot pedals of his power chair to raise him up enough to help stand!! Whew…we were a wreck for awhile after that!!

It was a tough transition for me to go from being hated to loved. My wounds were still fresh and that made it hard to be in an intimate mood with him. We worked it out and had a very good, pretty relaxed weekend away. Just us…shutting out the world as much as possible….then…Back to the real world we go…I’ll take it!!


A lot has happened

In a short few days a lot has happened.  I have been a little more demanding of his cooperation of caring for him.  Turned my back when he’s lashed out and he is very angry with me. Some of it called for and some of it seems extreme. I understand his resentment and even expected it. He has accused me of seeking undeserved sympathy and giving him “piss-poor, uncompassionate” care. He even ran away to his sister’s house without warning to them or me. They made it clear that they are willing to help but not take him in. I had to call a sit down with my mom and his parents all-together to put it all on the table and it really set him off. It’s an awful situation that leaves him feeling rejected. I HATE it. I’m feeling totally unappreciated and the girls feel rejected, too. We are at a crossroad of sorts…

I want to hire help as a means of release and privacy for him and me both.  He agrees, but wants to wait on Medicare to start. That’s at least a month away and with his progression…that’s too long. Our personal relationship is completely over. Everyone has their spouse to vent to and regroup with…except me. I no longer have a “husband.” I have an angry patient. I’m forced into making executive decisions to protect my well-being and the kids who feel they’ve not only lost their dad, but their mother as well. When I told them he may stay elsewhere, they were overly excited. Then he came home to an unwelcoming reunion.  It’s too late to “teach anyone a lesson”. We have to simply co-exist and survive! Where do we go from here? I don’t want him to feel trapped, yet he is. We are both to blame and yet we all deserve as much peace and love as we can muster up for each other. But nobody is feeling generous, forgiving and loved.  Our parents have demanded we forgive and accept mistakes and responsibility…move forward and rely on each other. He is angry…I am hurting…kids are miserable and confused. 

Is this really ALL my fault?? How do you care for someone on such a personal level that seems to despise you?  I’m not his mom, I’m his wife. I never tell him no, I try to prevent accidents and uncomfortable situations even when he fights me on it. But this power struggle is massive…I don’t want power or control. I simply want to survive and preserve myself for him and most importantly…my kids. My whole body hurts…I miss my church and my friends…I miss “our” life, I miss my “husband”…and there’s no going back

ALS is a thief and a liar…

Today just hurts and that’s all

My heart and soul have closed up shop to mourn the loss of ME.  I don’t even feel that I exist as s person. I can’t help anyone yet everyone is pushing for things to get done and happen and decisions to be made and I can’t even decide if I need to scratch my watch or wind my ass.  I know I must be real because everything hurts so bad and I can’t breathe! My 7 year old actually told me that she just gets mad and yells at me because it wouldn’t be fair to be mad at her daddy because he’s sick and her sister would just tell or be mean to her so I’m the only one she can be mad at. Same for my oldest. I’m everyone’s punching bag…TKO…can’t do it today

“When ALS steals home”

I quickly titled this blog and wasn’t exactly sure if it was what I wanted to go with. Then, I wondered if it even made sense.  Yesterday, after a 2 hour morning routine of dropping kids at school, meds, potty visits and smoking (with my few rounds of candy crush on my iPhone waiting on him to wake up) his brother in law loaded him up to hang out at their new house 4 minutes away. They just moved to town to be closer and aren’t even settled yet. I was completely alone, first time in months!  Weird! I threw myself together without a shower or matching clothes to make a very necessary grocery run. It’s now after 2pm. I drove the long way through town to a store where I wouldn’t see anyone I knew. I sat in my car staring blankly and numb waiting for the urge to open the door and actually step out into the common world. After a few moments, I reach for my wallet that I now realize is at home! Seriously?? I leave…drive 15+ minutes home completely irritated. When I turned onto my street, my blog title became VERY clear! I’m not “home”!  I don’t have a home anymore. It’s just a collection of walls that contain our cluttered stuff and  misery! I don’t want to be there, but I don’t want to go anywhere! Where do I belong??  Is this how he feels, as well as my girls??  Then I look up and see the card for the psychologist my primary doctor gave me and I realize…I have my kids in therapy for acting and feeling JUST LIKE ME!! Maybe I should call her…

I did manage to take my oldest with me and use our entire $625 ALS Arkansas Chapter quarterly gift card. It wasn’t crowded on a Tuesday. She and I perused the aisles and reflected on all the fun snacks we had at the beach last summer and talked about whether we could get a wheelchair for the beach and manage another trip this year. What friend could handle going with us?  Instead of busting her bubble, I let her imagine and plan.  My mind went to a thousand difficult scenarios that made everything seem impossible.  So, I shut my brain off and talked and cried on the phone to my mom…in public…for 31 minutes…”we have no freedom, we have no life…” And that was today’s TRUTH as far as I was concerned. She just listened and didn’t try to change my mind…which was actually awesome because I felt validated and secure by that instead of defensive!  It sure helps me understand how to deal with other people at times of loss and tragedy.  Validated. Nobody can “fix it.”  ALS stole my home….

My gripe

Last night I urged him to pick out snacks and eat something on our 3 hour trip home with his parents from nephew’s graduation. After all, I wasn’t having to drive The Swag’on and I could feed him anything. He said “no” so many times that he was finally mad. He says “no” most times to everything I ask (except a cigarette) and I think it’s mostly a control issue. HE will make his own choices…PERIOD!! I knew at that point how the rest of the night would go. Then, it did! 

We got home and unloaded at 11:45 pm. My mother and girls were asleep.  D’s dad toted his phone (which he ignores anymore), cigarettes, & cigarette holder around to the patio table.  The holder makes me think of “Breakfast at Tiffany’s”. I/we load it and light it because it keeps him from burning himself since he can’t open his fingers to drop the butt in the ashtray and I’ve burned myself too many times trying to fish a cigarette butt out of his hand! He was frustrated that I had no desire to stay out and smoke with him at midnight.  

I’m not a die hard smoker anyway, but mostly I was pissed because we offered many bathroom trips that he refused then went into “potty panic” with full-on lip biting and rocking mode as soon as we parked and were gathering several things. I dumped everything onto a patio chair and quickly followed him to a spot near the edge of our…bed of weeds, I suppose. I got him stood up but he was peeing before I could get him outside the jeans. Hot pee dripping from my hands, his chair and all over his feet. His next words were, “Could you light me a…oh…you can go wash your hands…”  In my head I said a smart “thanks!” 

We went through our long, bedtime routine of ‘his meds/my meds’ and stripping off clothes. I flatten his side of our craftmatic beds and help him out of the chair and into the bed. Pushing his legs and butt, pulling on his upper body via his shoulders. Stretch his arms (one at a time, slowly) over his head as this is the only time he can raise them with help.  I wonder to myself if his armpits still itch every night like they did for so many months and he just doesn’t tell me…but I don’t ask to avoid any conflict. I adjust his pillow til he nods and start working the covers neatly over his feet and straighten them up and across his midchest. Flat, no folds and no wrinkles all the way across! Place his bed remote on his pelvis where he can easily get his hand to it and hit the memory settings for him. He is tucked, tilted and vibrating! I’ve been in panties all this time so I search for at shirt in these piles of clean clothes that have no “designated spot” since we’ve remodeled a bathroom and moved rooms twice!  Finally…bed at 12:45am…and then he says it!



In his slow and slurred speech, over the roaring of our fan, “Could you… fix me… some of… that… trail mix… your mom got me?  It’s in…. the snack cab…inet, and… put it…. in a blue cup. An….d some ice water.”  I put a period there because this isn’t really a ‘question’! I reacted slowly with relaxing breaths to avoid triggering a migraine from anger. “Again, THIS is why I ask you multiple times to eat until you are full BEFORE we take meds and I’m falling asleep!”  

I go to the kitchen, fix the snack and drink, come back and get it situated between his hands in the dark and make him get a big drink through his super long straw because I WILL stay asleep now. It’s nearing 1:15am and I’ve had night meds and have to get kids up for school!  (Lord, thank you for your mercy to let us survive another day. Forgive me for my mean thoughts and actions. PLEASE, don’t let him choke while I fall asleep…) I never make it to ‘amen’ at night.  I fall asleep feeling guilty, but knowing that even if he could…HE would not get out of bed at 1 am for trail mix! BUT, it’s the only control he has…hoping that others fulfill his WANTS as well as needs.  It’s a difficult balancing act for me to keep him pleased but not let him control me and become overly expectant.  Where do you draw the line and say “NO.”  I have a hard time with that. But my face is saying “no” through pursed lips while my actions are saying “fine, whatever!”  We fall asleep separately knowing we will do it all again tomorrow like this never happened. 

This is just a tiny part of our daily routine that comes with being the 24/7 spouse of ALS.  If it were ME, would I have the same expectations? I can’t know because I’ll never know what all he is truly feeling inside. So I feel guilty, as usual. And angry…and sad. God forgive me…

My first road trip with D’s parents and how we got here

  I’ll try to include the picture of our current situation. We are in the very back of our handicap, full size, 13 year old van (which was donated and we are VERY proud to have)! The girls are being picked up by friends after school and aren’t with us since it’s a school night.  My father-in-law (whom we all love to give a hard time and is the topic for most of our family laughter) is navigating our route to our nephew’s graduation three hours away.  He has on goofy sun glasses and is eating a bag of creme cookies. I can’t figure out why they aren’t in the original package. all My mother-in-law (fly by the seat of her pants pastor, and ever the optimist) is riding shotgun and just tried to talk us into picking up a hitchhiker with a dog and let him ride with us. D says he really doesn’t feel like dying today. She says she’s done plenty, “it’s alright!”  And we all just laugh because we really aren’t sure how serious she is!  

D is so excited to laugh at his parents. They can’t hear us in this space-shuttle we have nick-named “The ‘Swag’on” due to its sunroof and interior strip lighting!  We know sometimes they are probably talking to us and we don’t know it.  And it’s pretty funny. 

My husband looks VERY sexy today! I got him cleanly shaved, including a trimmed goatee, ears, nose, neck and even armpits and some hygienic “man-scaping”! Makes it SO much easier to keep him clean and smelling good between full showers! We actually managed to fumble a pair jeans on him in his power chair (we left them unbuttoned because we can :)), a pretty print button down shirt, dusted off dress shoes (which broke a couple of my nails) and cologne. MmmHmm!!  We snuck in a little sugar after I watched his parents figure out how to transfer him into the regular seat and out of the powerchair. We quit as soon as they opened doors to get in their seats and giggled liked teenagers at ourselves. I assure you, this isn’t typical, so I relish those moments! 

My mom drove her hour and a half Monday commute to our city to work. Again, she’s got those “Monday Blues”. I’ve already forewarned her that the dishes were never done by my oldest (it’s her chore)!  I’m sure that topped off her day as well as knowing I failed to go to the grocery store…again! She will huff and sulk and I will ignore…it’s our routine.  It took us 39 years to learn to keep our mouth shut and avoid the pointless, nobody-wins argument that follows! But groceries and cooking is her “thing”! And we appreciate the heck out of it!  She will pick up Punkin, “come up with something to eat”, push my youngest to get her bath and try to get to bed early! I’m REALLY hoping she leaves the dishes alone like I asked so that the Princess HAS to finally do them! I’ll find out about midnight or so when we get back home!  

We’ve filled up on Mexican cuisine (D’s mom and I took turns feeding him). He laughed a lot. Sometimes we aren’t even sure why. I think part of it is what they call “Bulbar” with ALS since his speech has also become very slow and slurred. Difficult to understand or hear.  We laughed with him and cracked jokes. His dad said we may be breaking the law because he’s sure there is a rule against picking on disabled people! Then we made up names for what that law might be called like “Don’t be mean to crippled people”! Lollllll! I’m wondering when and how we are gonna manage a potty break?! Especially since he has on jeans! I cracked the urinal under a seat and we haven’t invested in external caths yet since we’ve managed so far.

Well…almost to Northeast Arkansas to find D’s sister and her husband and our niece before graduation!  That’ll be another days story…

So, another example of unwelcome trauma

  Yesterday, I left the house at 2 pm to take a quiet mental break from the demands of caregiving, an argumentative teenager and overwhelming family scenarios. After all, it was Mother’s Day…right??! I went fishing by myself at a farm reservoir in my flat-bottom boat. My mother hates it because she is a worry-wart and goes to extremes with everything! Every time I go (that she knows about), she warns me that “I am the glue to my family and she needs me well and alive to take care of them and not leave her with my overwhelming responsibilities!” I roll my eyes (through the phone) because I’m only trolling around fishing…no big deal! It’s my favorite activity, especially since we love to eat fresh crappie! 

I knew the fish wouldn’t bite yesterday, but the quiet waters and sounds of nature and being alone is so refreshing to me. After about 3 hours, I decided to head back to tie up the boat and head home and visit with some of his family. Lo and behold….while nearing my anchoring spot was a MONSTER alligator passing by! My afternoon quickly turned from relaxing and peaceful to pure fear and trauma as I watched him slowly sink into very shallow waters.  I’ve never seen an alligator outside the zoo! PURE PANIC!! I immediately called the farmer to come rescue me since the beast was between me and my car!  He was a LONG 15 minutes away. In my moments of panic and waiting, my mother’s words kept running through my mind. This is exactly what she was referring to! This thing was as big as my boat and could eat me whole!  I considered hurrying to the launch spot and jumping out and running…still thinking, waiting, trying not to cry or throw up! THEN, I see a head pop back up right where I park the boat…oh my God…he’s sitting there waiting on me!! But wait…it’s not him! It’s a SECOND gator! Only about 7′ or so but still! Now there are TWO! The farmer kept in contact until he got there to rescue me and get me safely to my car. I called my mama (reluctantly) and cried most of the 35 minute drive home!  Needless to say, she was right. I’m done fishing in the boat for a while and will have to find a new hobby when I’m done having nightmares of what could have happened. I hate cleaning so instead of hiring caregiver help, I think I’ll hire a maid. 

So…now…what will my relaxing, escaping hobby be?? *sigh