THE GOOD, THE BAD AND THE ADORABLE

 

Ashton and his P-Baw playing "phone"

What diversity a week can hold. A few days of hopeful improvement followed closely by days brewed in the depths of despair. When it feels like we are doomed to misery, in steps a whirlwind of a 3 year old that zaps the household with a stiff dose of adorable. This is how week # 9 P.S. (post stroke) is summed up.

Before the set back there were a few days of encouraging progress. A visit from friends last Sunday had Dave participating in simple conversation and he appeared to follow most of what was said. The Seahawks kicked butt that afternoon and things were moving in the right direction. Monday and Tuesday also proved fruitful with positive development in his speech therapy. He was able to say or write the correct word for single objects that were held up for him. This may not seem like much but believe me….it is HUGE! It shows me that his brain is rewiring itself and finding ways to communicate. We will continue to concentrate on simple written words and hope for progress.

The bad days began the day before Thanksgiving. He had been battling a head cold that got the best of him. I didn’t meddle with his need to sleep the day away for he obviously needed a break. I hoped he would gather strength for we had been warned that holidays are very tough for aphasics.  I also hoped it would be different in Dave’s case but it I was wrong. For the most part Dave masked how miserable he was but the next morning under my questioning he confessed his desolation. What a low moment for us both! Thanksgiving used to be his favorite holiday.

I have been receiving one of those educations one could live their life without…you know the kind…and this unveiling of “The World of Aphasia” (which affects over 1 million people each year) is a good example. I have learned that people with aphasia cannot cope well with large groups and a Thanksgiving Day with 18 present was a recipe for failure. This blessing in normal circumstances turned out to be the unfortunate part. My family is large, raucous and extremely close. We are populated by whip smart individuals with smart aleck lovability and razor sharp wit. Up until his stroke Dave would partake in the familial wordplay and was respected as a contender. He has been blessed by their loving support for 33 years. My siblings have been our best friends and we have always anticipated family gatherings with enthusiasm. For Dave there is a grieving for events once so treasured and now distressing. We are told that this will be the hardest year for the holidays and will only improve. Assertions like this are what I hold on to!

After the abysmal day following Thanksgiving the clouds began to break with the arrival of our grandson for a sleepover. The joy that children bring with their unflappable mind-set and talent for unconditional love was the tonic this house needed! Ashton loves his super heroes and he defines people into 2 categories…the good guys and the bad guys. He is fond of striking a dramatic pose with fisted hand raised high with the other on jutted out hip while proclaiming in lung expanding tones “I will save the day!” And he did just that.

Ashton can be described as a dynamo that LOVES to talk! And talk he does….from the first moment upon waking when he yells for me at the top of his lungs “Graaaaannnnnnnyyyyyy!” to the last second before dropping off at night…he exercises his own personal first amendment with relish. He does not judge or shy away when Dave talks in gibberish to him. This does nothing to deter the little marathon talker from continuing his diatribes.  From the beginning I have explained to him that P-Baw (his name for Dave) has a BIG OWIE to his brain and it makes him talk funny at times. I emphasize that it will take a long time for his owie to go away but we must continue to help him with his talking.

I am learning how to adjust our lives so that Dave will not be overwhelmed. He deserves to feel capable and smart, valid and valuable to himself and others. At times it feels insurmountable and other times resolute. I do not know what if anything we will be able to change or adjust come Christmas Day. Next week I just might sit on Santa’s lap and ask him for a miracle. 

Rough Patch

 Dave showing his strut at the zoo 11-7

I try to keep my blogs uplifting despite the serious situation but sometimes it just isn’t possible. I haven’t written for awhile because not only have I been struggling with my health but Dave hit a major rough patch last weekend and all my energies have gone towards helping him recover. We have been told plenty of times that his recovery will be a roller coaster but it doesn’t stop discouragement when things go south.

Sleep, or lack of it, has become the greatest enemy. Plain and simple: without adequate sleep his progress is impeded. Directly after Dave’s stroke he began the battle of a good night’s rest and so far he is not winning. His restless leg syndrome, which was managed before, has become ridiculously out of control. Every evening about 7 his leg tremors begin to shake his recliner like a train rattling down the tracks. This continues throughout the night. We have tried new meds, acupuncture, sleeping pills, and I even bought a heating blanket for the bed but to no avail. It interrupts his sleep patterns and leaves him bleary and tired the next morning.

       NUMBER ONE IMPORTANT for stroke recovery is GOOD SLEEP!!!

I am hoping with time his tremors will subside but meanwhile I am open to any suggestions. This morning upon waking I even considered medical marijuana…hmmm…need to think seriously about this. I might be onto something!

Last weekend should have been a good one for him. My brother took him to a Husky basketball game and his sister came down from the mountains where she lives and spent the weekend. He moved only when he had to and his normally determined demeanor faded. He refused to eat much and didn’t do any of his therapies. I was concerned! Many times he would utter “I don’t care” when I tried to motivate him. But what scared me the most were 4 simple words: “I want to die”. Although he only muttered it once it showed me the depths of his despair that night. Logically I know that this is probably not an uncommon reaction but the anguish it elicited in me was acute!

I decided a change of scenery was due. On Monday morning I loaded Dave and Homer (our trusty Weiner dog) into the car and drove up to the family sanctuary on Whidbey Island, bringing our grandson along for comic diversion. We cranked the heat up in the condominium overlooking the beach and Dave spent a good deal of the day napping and resting while I frolicked on the beach with Ashton and Homer, went to the local park and made cupcakes.

On Tuesday he seemed to have snapped out of it and in his speech therapy that day “Kara the Magnificent” came up with a battle plan that we are enacting this week. It may take some time to address some of the issues we outlined but it feels good to have a list to tackle! I grew up in a family of list makers so this is right up my alley! Now the goal is to get all of us healthy enough to focus directly on these matters. Dave came down with the head cold that is going around and I have an anchor sitting on my chest and a dry cough. What a household we make! Now if only Homer had opposable thumbs!

One of the activities we both enjoyed before the stroke was playing a canasta card game called “Hand and Foot”. Over the years we have taught many people how to play this social card game. I was anxious to have Dave try and play this again, especially after he showed me he is could play cribbage. Last weekend with his sister here I was dismayed when he refused to play. But this past Wednesday we received a visit from the DuValls, friends that we have fanatically played this game with for over 15 years. He finally gave it a go and found out that he is capable of playing it!!! I am sure it eases his mind knowing he can be competent at something he loved before. This milestone will encourage him to move onward and give him reasons to stay on this path of healing and rehabilitation!!

 

Side by Side

When I first began blogging about Dave’s stroke I worried a bit about infringing upon his privacy. We are very different creatures and while he tends to play his cards close to his vest, I am an open book and need to express myself often and candidly. The deal breaker was that people really love this man and need to know how he is progressing. Besides….this is not his struggle alone, it is mine as well. People remind me again and again to make sure and take care of myself and writing is one way I do this.  If I cannot create pictures with paint to ease my soul then painting them with words makes a good enough substitute!

In the beginning I also wondered if anyone even read this since it is always comment free.  But apparently people are listening for now and again someone says something that makes me realize it touched them in some way...allowing me peace for making our private struggle so public. I appreciate all the sincere thoughts and pure prayers sent our direction and it really lifts my spirits when I get emails of encouragement.

Today Dave and I are headed for the gym. It will be his first return since the stroke and I know he is not excited but I am! It will take awhile for him to get back into the rhythm of it but he will learn to love it once again (I hope!). He already has dropped weight and is motivated to lose more. The “Stroke Diet” is not one I recommend but it seems effective so far.

We are relishing the sunny and gorgeous season. On Sunday we spent 4 hours at the zoo with our grandson and had a wonderful time!!! Dave did better than I expected with all the walking. In fact I had rented a wheelchair for him to take breaks in but he insisted upon hoofing it for the most part. Our grandson spent more time in it than he did and it made a great carrier for my camera equipment and our lunch!

Monday he was pretty tuckered out…but not enough to spank me in a game of cribbage. He skunked me by 14 points! (Anyone familiar with the competitive nature of my family knows I am incapable of throwing a game!) I brought the game out not only because we used to play it ritually but also it is darn good therapy for him. Shuffling the cards is still beyond his abilities but I had him try once each time it was his turn. Most of the time he keeps track of the addition but saying the correct words is beyond him at the moment. I reinforce the counting but he pegged his moves correctly EVERY SINGLE TIME! I would swat his left hand if he tried to peg with it….using his weakened right hand to peg was one of the objectives.

This week I have come to believe Dave will make a complete or almost complete recovery, even if it takes a year or two or more. What he has accomplished in just 6 weeks makes me so very hopeful! It has also taught me extreme lessons in patience and faith and love. Those who know me are snorting with skepticism about the “patience” part but in all seriousness, the patience I feel is profound. For the first time in my life I am not in a hurry to do anything. Before I would measure my day by how much I produced or accomplished. No longer is this my litmus for success. Each day is to be treasured and taken with slow steps forward. I am sure this will change as Dave progresses, but it is what he needs right now and whatever he needs is fine by me!

Acceptance

This week is going much better than last! We have cycled through denial and anger and have come closer to acceptance. Acceptance does NOT mean we are rolling over and taking it. What it does mean is that we are no longer in DESPAIR over our future and working towards healing while also adjusting. “Change is good!” I proclaim with a cheesy smile!

 

Frustrations will come and go but we try to learn from each one and move forward. When it took 5 minutes for me to figure out that Dave was trying to tell me he had run out of clean underwear I got annoyed! After starting the laundry I went back to him and explained a much quicker way for him to convey this message rather than 20 questions and flat out guessing from his nonsensical words. We get mad, we get frustrated, we make adjustments and later we laugh about it!

A couple of big milestones this week:

• Dave was released from Occupational Therapy and no longer needs outpatient appts. ~ we continue to work on this area at home and I have him sewing on buttons and threading beads….a regular sweat shop atmosphere! He also made his famous homemade biscuits for dinner on Sunday….YUM YUM!! All these tasks require fine motor skills and I have donned the hat of therapist and devise torturous exercises for him to refine his movements.

• Dave was evaluated for driving and given the thumb’s up to get behind the wheel whenever feels comfortable with it. He has indicated to me that he isn’t ready just yet…but soon…and then we will approach it as if he were 15 with a fresh driver’s permit. Just for nostalgia reasons alone I intend to do all the typical parental maneuvers like grabbing the steering wheel in panic or stepping forcefully on an imaginary brake. In all seriousness, this is a monumental step!!! At first we were told it could be a year before he would drive and not long ago it was amended to 6 months. But at 5 weeks post stroke?!?!? Unbelievable! 

   

We may be finished with outpatient Physical and Occupation therapies, but Speech therapy continues and will most likely continue for an extended period of time. I am glad that this is the area that I find the most fascinating. When things don’t seem to go the way we would like them to I remind Dave that it could have been so much worse and he agrees. We are thankful for that!