fall risk...(part 1)

Room 3101 [FALL RISK]. Room 3102 [FALL RISK].  Room 3103 [FALL RISK]. We continued down the hall of the hospital floor where they had moved Dad. This wing was specifically for stroke patients. It was alarming the number of rooms marked [FALL RISK]. Those rooms not marked were also not occupied.  It was inevitable we would end up here. I will have to back track a bit to explain how we ended up in the stroke ward on a Sunday night.

Lately, I have been dealing with caregiver related depression. I know I am going through a low point when I start looking up the stages of Alzheimer's to see how long each stage generally lasts and fishing to see if we are getting close to the end of our journey. Then I think about how long I have been journaling  as self therapy. I have only been writing a little over a year but it feels so much longer. I know Dad is at least at stage five but possibly at stage six depending on who you talk to. A few days ago I looked up the length of the stages. Stage five: 1.5 years. Stage six: 2.5 years. Stage 7: 1 to 2.5 years.  My heart sunk. If he is only at stage five...this is a marathon I did not train to run. Likely we have a minimum of three more years of Dad getting progressively worse until we are eventually taking care of his shell. This time last year Dad seemed considerably more optimistic. He would walk the backyard slowly but unassisted, engage in lively (if repetitive) conversation, argue about hygiene but eventually cooperate with a little incentive from the bakery. Now he only goes outside to wave goodbye or sit on the porch. He stubbornly refuses his cane or rolling walker but can't get around without using the walls and furniture to support himself. For some reason he rejects these aids as a sign of weakness, offended at the thought that he might not be able to care for himself.

The original idea to start writing my thoughts on the progression of Dad's disease started about four years ago but I put it off feeling that it was a bit self indulgent, even arrogant to think I really had anything useful to say. I finally gave in when Dad seemed to be firmly in the moderate phase of the disease September last year. We have definitely had a roller coaster ride as a family since then. Funny how I thought the disease would be the focus of this journal but it really seems to be the the binding constant of an ever changing story about the caregivers rather than the patient. All of us cope in different ways. We have our good days and bad days. Some weeks we work like a well oiled machine and others we are ready to throttle each other or throw up our hands and walk away.

Patterns also change. Since Tom's death we are back to three shifts a week, each. Concern over dad's lack of exercise and unwillingness to leave his beloved recliner is at a new high. Dad doesn't remember to elevate his legs when he is in the recliner and because he is there for prolonged periods of time he gets edema in his calves, ankles and feet. This causes his skin to become tight and itchy especially on his left leg. He will scratch himself to the point of bleeding and sometimes will say he has to go to the restroom in order to privately dig at his leg and not have to listen to anyone telling him to stop. I have begun trimming his nails before each shower to keep him from scratching down to the bone. The first time I did this I joked about his long pinkie nail asking if he was try to grow a "coke scooper".  My sisters enjoyed this little joke. Nail trimming is getting more and more important. He hates it but is always grateful once it is done. If he were allowed to keep his claws he would dig at his leg until he hit bone.

In the past four months Dad had gotten weaker and weaker.  Each attempt to get him to shower or take his meds was becoming increasingly more difficult. The past three weeks it appeared the writing was on the wall. Dad defies any attempt at hygiene like a five year old trying to get his way. He insists that he showers every day, insulted at the implication that he does not. I tend to try to prove him wrong. Appealing to his sense of reason is quickly becoming pointless. 
 "You haven't showered in a week!" 
 "I most certainly have! I shower every day!" (This statement from Dad is never as fluid as it reads. It's stuttered, chopped and sometimes incomplete, but the message is loud and clear.)
 "No you do not! You know how I know? I chose that outfit you are wearing last Saturday!"
These exchanges are repeated almost verbatim every week. When Dad realizes he can't talk his way out of it he turns his head, impatiently tapping the arm of his recliner, pondering his next argument. The past two attempts have ended with a grudging, "Okay, I'll do it but when I'm done you're gone."
"That's fine with me," I agree just as stubbornly, "As long as you shower I will be happy to leave once you are out". 
He is never happy to hear that his terms are acceptable.

More and more I started finding him so weak on my nights that I would spend the night just to make sure his legs stayed elevated while he slept so he might have enough energy to move the next day. Mike, my constant supporter, will offer to take care of the Allison solo or even come over and spend the night as well. He keeps Dad company while I do laundry or dishes and helps me remind Dad to keep his feet up, even putting pillows under his calves for extra height. With Mike in the spare bedroom I take my place dosing on the couch. Occasionally, DAD wakes up in the middle of the night disoriented. I will hear him stir and then let out a startled "Uuuah!" as he wakes.
"You okay, Dad?" I ask in the dark.
"Paula?" he says sleepily.
"I'm Erin", I remind him gently.
"I gotta let buddy out", he says, struggling to get out of his recliner. I bring the rolling walker over to him for leverage but he rejects it at first. "I don't need that..." then after a few straining attempts to stand he has no choice but to take the offered help. Depending on how tired he is he may or may not use the walker to make his way to the back door to let out the dog and then go use the bathroom. I follow closely behind, acutely aware that even with me there if he begins to fall the odds of me being able to save him are slim. 

On the nights that I chose to sleep there I informed Paula of my intentions. We both knew Dad's days with the illusion of independence were running out.

Two weeks ago I arrived for Friday shower night. Dad was more argumentative than usual and I was alarmed how weak he seemed. Nevertheless, I chose to continue to attempt hygiene since he had clearly not showered since the previous week. I put my cell phone in my pocket, ready to call for help if I should need it. Mike stayed with Allison in the kitchen preparing dinner and entertaining Buddy. 

Dad began the ritual of preparing removing his socks, commenting on his swollen feet, pulling his pant leg over his knee so he could dig at his shin and then complain about what a mess it is, removing his watches (he wears one on each wrist. I remind him about them saying, "Ya wanna give me 'East Coast' and 'West Coast'?"), removing his outer shirt, pants, and finally hemming and hawing before giving me his t-shirt. As always I let out a playful "Aaaargh!" as he removed this last item because it still makes him laugh. I turned on the water and made sure it was appropriately warm before watching him make his way to the shower and allowing him to "do his thing in privacy".

I left the room and sat on the couch in the living area. Not thirty seconds had passed when I heard a noise like he had dropped his razor or a brush. Suspicious, I ran back into the bathroom and found him braced in the doorway of the toilet area, his legs shaking as he fought to remain standing. The shower door was open and the water still running. He had really tried to make it. I grabbed my phone and sent a one word text to Mike: "HELP".


Mike bolted into the room and positioned himself in front of Dad to keep him from falling forward while I remained behind him with trying to keep him from leaning too far to either side as we made our way back to the bed. His legs faultered beneath him a couple times. No way I could have helped him back to the bed by myself. Dad collapsed onto the bed and we positioned his feet up on the foam bed wedge. Next we helped him dress in clean scrubs. Shower would have to wait for another night. 


Dad laid still while I searched for something on his bedroom TV to entertain him. I sent a text to Paula explaining what had happened. Mike brought dinner into the bedroom and we all camped out watching a boring movie that none of us were interested in. 

"What are we doing in here", Dad asked from time to time.

"You almost fell", we explained. "We are staying in here while we keep your legs elevated".

Dad would sigh and roll his eyes. "We don't need to stay in here. Lets go out to the living room", he protested.
"No, this is good, Dad", I insisted. "Your legs need to stay up for now". It was frustrating for all of us.

Paula called after a while. "What happened?" she asked. 

"We tried to get Dad to shower but he almost fell while he was in the bathroom", I explained and then detailed for her the events leading up to our positioning on the bed.

Paula, being the medical professional of my siblings, speculated what might have caused Dad's sudden weakness. She felt it could be heart failure related to the DVT that was causing the swelling in his legs and that we should keep both his legs and chest elevated in the "recliner" position. This new development could put him at risk for an embolism. Keeping him in the correct position should be easy enough as long as someone stayed with him. We agreed I would need to spend the night. Paula was grateful I was staying.  

We positioned Dad on the recliner and, fortunately for me, Dad did not argue that he needed to use his walker during the night. He made two trips to the bathroom and to let Buddy out. If I had not been there to remind him he would have returned to the sitting position without reclining. I wondered how many nights I would have to spend like this. 

Morning came and Dad was resting peacefully, still reclined with his legs elevated. I decided it was time to go. Bradley would be here soon and it didn't look like Dad was going anywhere. I softly told him, "Dad, I'm gonna go. You keep your feet up, okay?" He smiled and nodded.  I gave him a kiss on the forehead and started to walk away. 
"Hey...come here." he said weakly with a smile. 
"What?" I asked and walked back. Dad held out his arms for a hug. I hugged him and told him I would be back later. I guess he was glad I stayed.

To be continued...