The Hard Stuff

The latest news is that I had to let a caregiver go.  It was incredibly hard decision. Painful and nasty and I likely lost a friend out of at the deal.  The bottom line is that it wasn't working out.

When I first approached my friend I knew that she had helped a little with respite caregiving of her stepfather who was a stroke victim. I knew that she was a breast cancer survivor as I had the honor of being her friend throughout her ordeal, sitting with her during chemo, being with her on the day of her mastectomy, and visiting her at her mothers home, post-surgery.  I know that she exhibited courage, grace, and dignity in the face of her cancer experience. I knew that she had quit smoking and that she was bipolar. I also know that we lost touch for over two years as I am dedicated to being a sober woman and she was unable to remain so at some point following her ordeal. I also knew that she was down on her luck, living in a bad neighborhood, living with an overly-needy manipulative roommate and unable to pay her rent by conventional means.  (She was on public assistance, begged for money from a long-time "friend" and was receiving various charities.). Her wealthy family had all turned their backs on her for reasons that she did not seem to be able to fully articulate.

We had recently reconnected and I told her of my ALS plight. She said that I was there when she needed me and that she would be there for me to the end.  She assured me that she was over two years sober.  I saw a metaphoric door open of mutual opportunity for us if it was acceptable to her.  

I have a spare room in my tiny two bedroom, two bathroom house and I offered her the opportunity to be a roommate/live-in caregiver for me at nominal pay.  Benefits being we live on a beautiful half-acre in a modest, safe neighborhood, no rent payment, zero utilities, no charge for cable or Internet, we would pay for healthful groceries, provide a wheelchair van (so she could just park her poorly maintained SUV), and she could participate in water aerobics.  And finally, she could bring her 14 year old rat terrier as well as her Siamese cat.  The idea was that we would be mostly roommates but able to offer her some spending money for caring for me.  Since my ALS is progressing fairly rapidly, and she seemed willing to care for me until the end, we thought it would be a good idea to eventually send her to CNA school to increase her skill. Since she was already on public assistance, we thought there would be money available for her to get this critical schooling and placed the onus on her to pursue this.

You already know this did not end well.  I will chronicle the details: Five weeks ago she showed up to begin.  From the very first week warning signs started to pop up.  She hated my rack garbage system because she could not figure out how to put the grocery bag on it properly and decided that I needed to change that.  The very first meal she made for me I stayed completely out of the kitchen and could not believe what it ended up to be.  It was horrible! She prided herself on not using recipes and I thought to myself, "Oh my God!"  I did not realize that someone could screw up basic spaghetti.  In the interest of putting our best foot forward, I complimented her and I ate it.  The next day I suggested that we use some recipes and took back the chore of meal planning. I did have to point out that she was over-serving me, dishing-up four times the average serving. She was also thoughtless as to where she placed my dishes. (My right hand is mostly paralyzed and yet she persisted in placing utensils and glasses on my right.)

We talked of the importance of her learning about my disease. First I gave her all the information that I had and explained some of the treatments that I was undergoing.  I told her that I would like her to go to the ALS caregivers support group as well as the ALS support group that both my husband and I were attending.  She vigorously accepted and expressed appreciation that we would include her.  I suggested that she watch the YouTube video regarding the Deanna Protocol (a regimen of vitamins, minerals, and exercise that I had embarked on.). We made the MDA/ALS caregivers support manual as well as the ALS disease manual for her to study.  Instead of making use of these various modes of learning, she chose to stare at her phone and play slot machines most evenings and last-minute canceled going to my ALS support group in favor of getting work done in her closet.

Also from the first week she could not seem to remember to bring adequate supplies for taking care of her dog (for example dog bedding, dog food, puppy pads.)  Instead she commandeered one of my blankets, would raid my cupboards and use people dishes to feed and water her dog placing the water dish in front of my front door impeding access.  She would also feed her dog in my living room on my white carpet.  I asked her to bring her own dishes and to please choose a place on either tile or linoleum in the future. She seemed to take umbrage to the request but complied. By the way, my own cat drinks water on the linoleum and eats her food in the laundry room. Also from the start she had a habit of opening my front door and standing with it wide open calling her dog to go outside, allowing cold air to fill the house, making me cold and uncomfortable.  She started "borrowing" cans of tuna to feed her dog and "forgetting" to replace them as she said she would. 

Finally, the dog began urinating in the middle of my living room for no apparent reason.  The first time I let go by accepting the requisites "I am so sorry".  The second time was right next to my power chair.  The urine sat atop my carpet due to Stainmaster, So although I was annoyed I knew it wasn't that big of a deal.  Until… She stomped on the paper towels ensuring the urine soaked through to my carpet pad. I was apoplectic!  At no time did she discipline her dog, Instead she offered me lame excuses saying "she's on medication". And "I should've let her out earlier".  The third and final time her dog peed on my carpet was in the same place next to my power chair to which I could only say "tomorrow, you need to leave your dog home."  She sulked at having to leave the dog at her home and still offered no solution.  In the weeks of care, she talked of how great her cat was and waffled back and forth as to whether she would actually bring her.  I sensed a problem there else why would she not bring her cat over to meet my cat?  

  

My intent was to utilize my friend to take care of me while we deepened our relationship becoming more family than friends. She and my husband spoke about how they would share household chores.  She promised to prepare food, mealplan, grocery shop, clean the kitchen, clean bathrooms, help with the laundry, and offered to take me to appointments and even to mow the lawn.  I told her that all of those things would be good but that I was not paying her to do those things.  When I tried to dissuade her from lawnmowing, she insisted saying that she loved doing that chore.  Since I also loved mowing the lawn, I finally acquiesced.  At that point it was a disappointment when she arrived and just flat out didn't do it.  This was to become an ongoing theme. Overpromising and under-delivering.

I so desperately wanted this arrangement to work out for the both of us but it just was not to be.  I was grasping at straws looking for good solid reasons why I should just keep trying to make it work.  She wasn't very good at keeping me hydrated.  When I would ask for my water bottles to be refilled she happily came over to collect them, took them into the kitchen, and promptly left them there.  In order for me to get proper nutrition I had to do my own meal planning, arrange grocery shopping, and insist that meals be prepared as per recipe. And often times sit in the kitchen to make sure all was going well  (that she wasn't cooking all meals on high heat, and be on hand to tell her where spices and materials were.). 

She fell flat in the dressing department. Each night at bedtime she fumbled over the same clasp on the same bra and never did get comfortable with it.  She thought the answer was for me to get new bras (like I should also get a new garbage can).  However, everybody else that helped me in that area were able to get it figured out by the second time. Likewise, every night she would hurt me removing my shirts. I would patiently explain the procedure and did what I could to help her along but she just couldn't get the concept that she needed to move the clothing around and not yank on my atrophying arms.  Once again her solution was that I buy new clothes.

Consequently, I failed to trust her when it came to getting me into and out of bed.  I simply could not imagine her yanking on me to get me out of the bed to go to the bathroom.  Instead I opted to spend the night's in my lift chair. That way when the urge to go hit me, I could get up onto my feet and get back to the restroom.  Neither did she seem to understand her duties with regard to my mobility.  In public she seemed to get it that she had to be attentive but in my home seem to be a different story.  My husband explained that our toilets were standard height and that my knees and legs weren't strong enough to get me to an unassisted standing position and that I would need her assistance consistently.  We dealt with that issue as best as we could, eventually installing a taller toilet back in my master bathroom.  We let her know that it was still very important to accompany me to the bathroom and to help me up from the toilet as needed.  Imagine my surprise when she began leaving me sitting on the toilet to attend to other nonessential activities.

Apparently I am a slow learner.  It took me 5 to 6 long weeks of building stress to realize that the person I had chosen did not have the aptitude nor the inclination to be a good caregiver.  While she wanted the stability that we could offer her, she just wasn't able to live up to her own promises.  I was faced with the daunting task of telling a friend that we could not follow through with the plan for her to move in as my caregiver.  I had no desire to make her feel rejected or unwanted. It was simple necessity. We must remain open to find the best person that can give quality caregiving.