Sunday, February 9, 2020

Blessing in the Trials

On January 18th, my father (sole care-giver of my demented mother) was attempting to stay fit and healthy to meet his responsibilities. He walks inside the house (to remain close to my mother) and on his final trek in this circular path through dining room, Florida room, and kitchen, he speed walks. While thus speed walking, he tripped and his head went straight for the corner of the stove, so he put his arm out to push himself away. During this fall, he shattered the bones between his shoulder and elbow of his dominant right arm. Since my mother had already been declining in her mobility, it took her a full half hour to get to a phone and bring it to his side. He then called a friend to come sit with her and an ambulance to take him to the emergency room. At the emergency room, he was given two options - surgery and insertion of pins, which would keep him from my mother longer at the outset but would heal more quickly, or sling with a longer recovery time. He chose to return to my mother as quickly as possible.

When he saw the arm doctor a few days later, he received a new-fangled device (only in its infancy) that is like a plastic shell, holding the bones in place with Velcro straps. The difficulty with this device is that he cannot keep his arm over the heart (something I remembered as necessary to reduce swelling when Sean broke his arm and Trevor broke his leg). Thus, his lower arm and hand have swollen to gigantic proportions and look as if they might burst at any moment - sorry for the belly exposure - :)



I arrived to help care for them both on Tuesday, January 21st. On Saturday, the 25th, I noticed that his lower arm had turned a more bluish-purple color, and had small pustules beneath the skin. I called my sister-in-law (a nurse) and she recommended he go to the ER. He went and I remained with my mother, worrying intensely that something would happen to him and I would be left to care for her (mainly a concern because he administered all the medications and with two giant weekly pill containers on the table, I didn't know which morning and evening meds were hers and which were his). Thankfully, after they loosened the device and sent photos of the swollen arm to his arm doctor, the doctor determined it was all within the range of normal healing and he returned home. I don't think he slept well the entire duration of my visit because he refused to take the prescribed pain medication and could never seem to get comfortable or ignore the pains that increased at night-time. Many nights, he slept in his recliner (not the best, since this meant blood continued to pool into that swollen area).

As for my mother, my main concern for the visit was that my presence would unnerve and agitate her. Perhaps because of her intense pains, that never happened. I walked directly into their home and she looked up and seemed to recognize me immediately. Not once during the stay did I feel she was uncomfortable with my presence and when I asked her to identify, she responded "You're my Wendy!" This was a great blessing.

Still, it was an intense visit. My mother declined rapidly and we assumed she was merely in late stages of Alzheimer's. The first day there, my mother walked from her bed to the kitchen for meals and made small trips to the couch in the Florida room to watch television with my father. Every day following, her ability to walk declined and soon she was unable to shower or make it anywhere besides her bed and small path to their bathroom (about five or six steps away from the bed). She was convinced she was dying and we weren't sure she was wrong. My dad had displayed two Scripture passages above his desk and when she grew agitated, I often read those to her and she immediately calmed and went to sleep almost every time (Psalms 139:16-18 - all my days were ordained for me by You before even one came to be; 2 Corinthians 4:16-18 - Therefore we do not lose heart, though outwardly we are wasting away, inwardly we are being renewed).



She had an appointment for lab work on Tuesday, January 28th, but due to the limited space between her bed and the furniture, combined with her inability to walk, we could not get the wheelchair to her to transport her to the appointment. We had home health care nurses come in to assess her on Tuesday and Wednesday. The physical therapist recommended a gait belt (I had attempted to practically carry her back to the bed on Tuesday and worried I had damaged my back) and a bed rail (she was becoming a fall risk).

Thursday morning, my dad determined we could no longer get her between the bed and toilet and she would have to be seen by a professional, so we called the paramedics when we couldn't get her off the toilet and back to the bed. Upon taking her blood pressure (something like 81/33 if I remember correctly, although it was stressful, so I could be wrong), they rushed her to the ER, where her hemoglobin levels were assessed at 2.1 (normal would be 10; they begin transfusions at 7). They immediately began to administer 3 units of blood and she perked up enough to vigorously fight them when they examined her further (she hated the mittens they placed to keep her from pulling out her neck ivs). We were sent to the waiting room and could hear her in the ICU hollering, "Ron, they're hurting me! Come save me, Ron!" It was excruciating!

Friday they did some sort of imaging test (took most of the morning) and then an EGD test:




She has something called GAVE (gastric antral vascular ectasia), or in layman's terms, watermelon stomach. The veins in her stomach bled, causing her to lose so much blood that she was perilously close to death. Her primary physician (who had just seen my mother in her office on 1/21) also had assumed the decline was due to Alzheimer's. They could not go in and cauterize the bleeding during the EGD because my mother was too weak.

She was moved to a regular room on Saturday and started on a liquid diet. Thankfully, she began to regain some of her sense of humor. When the nurse asked her to rate her pain on a scale of 1 to 10, she looked her in the eye and declared "12!" She also muttered things like "I'm never coming back here." We spent every day between 8 a.m. and 8 p.m. by her side (only leaving around 5 to run home for dinner and my dad's meds).

My sister Dawn arrived on Monday morning at 1 a.m. and it was a good thing. On Sunday, the hospital case worker handed us a booklet full of resources and told us we needed to find an assisted living/memory care unit to move my mother to when she was released. We spent most of that day googling places on our phones and Monday, Dawn and my dad physically searched (while I remained with my mother) and found a perfect place. Most places would put my dad in an assisted living wing and my mother in the locked-down memory care wing, separating them. This one allows my mother and father to share an apartment in a memory care facility, with each of them receiving whatever level of nursing care they required (my dad for his arm and my mom for her dementia). They took me back with them around dinner time to turn in a $2000 deposit check and I was quite impressed with the facility (full of purple couches - my mom will love that - and amazing art sculptures and paintings, a therapeutic pool, work-out room, beautiful courtyard view from the apartment, etc.).

However, on Tuesday, the hospital's physical therapist finally came and assessed my mother. Her report changed things. It was clear that my mother was unable to even make it to a bedside commode without assistance and could not be sent to a mere memory care unit. She needed to go to a rehab facility. For some reason, we were given a different case worker and he came insisting we now needed to select a rehab facility where she could regain her strength. He was very impatient with me because I worried I was signing off papers to determine her rehab facility before my dad and sister could make their own selection - they were only papers to allow the paperwork to be sent to that rehab facility.

Thus, Tuesday was fraught with intensity because my dad had appointments with both the primary physician and his arm doctor (who only suggested we release the straps daily and get a compression sock for the lower arm and hand) and they were busy trying to locate their choice of rehab facility (the hospital wanted the bed). I spent the day with my mother who agonized over my father's absence and begged and pleaded for me to get him there somehow, and with the case worker breathing down my throat about finalizing plans for her release. Dawn and Dad spent the day between appointments viewing two rehab facilities.

The first option was a horrible place I had visited with my dad while Mom was still in the home and I had been horrified by the sights and smells. My dad insisted that was the place she should go because the primary physician would see her there. My sister and I both wanted her at the rehab facility that is only a building away from the assisted living/memory care apartment where he had placed a down payment. Thankfully, my dad finally agreed not to make a final decision without seeing that facility and in the end selected it (the very facility the hospital asked me to sign forms to send paperwork to).

Wednesday morning, I was anxious because I needed them to release her and get her moved to the rehab facility before my evening flight home. However, bad weather predicted for Indianapolis led to a cancelled flight, so I was able to spend the late afternoon/evening with her in the new location (probably the most excruciating visit - because she understood why she was at the hospital, but was furious to be shifted to another location meaning separation from my dad - he is her absolute security blanket and as long as he is by her side, she is content). She looked at my dad, tears streaming from her eyes, and said, "I will never forgive you if you don't take me home, but leave me here in this place."

I relished every opportunity I had to spend the time at her side. I read Scripture to her, prayed with her, sang her songs of encouragement, and stroked her hand and forehead. While my sister and dad were gone Tuesday revamping plans, I mentioned that I had to return home to care for my own family on Wednesday and she teared up and said, "What will I do without you?" The days were bittersweet because of her perilous health and constant pains, while also a blessing. I kissed her forehead and told her goodbye, still not knowing if that was my final greeting to her.

Thursday I returned home and I received texts late that night from my sister - they were in the midst of a raging tornado, sweeping directly over their neighborhood. Here is a photo of the neighbor's roof now lying outside my parents' back window:



The most recent news I have from my sister is that my mother's platelets are extremely low (44) and her hemoglobin is back down to 7. She has been working hard at the physical therapy (motivated constantly by the promise of getting back to a place where she can be with my father all the time) - managing to get to the toilet occasionally (not nearly often enough since the liquid diet increases her urination) and walking down the hall with a walker. She looks so much better - having regained the color in her face - and happier when my dad is by her side:




The future remains uncertain. My dad is frustrated because their primary physician, who knows my mother best, does not visit this facility, so mom will be handled by people who don't know her well. My sister must return home on February 13th, and my dad is hesitating over the decision to move into the assisted living apartment. My sister wants him to begin clearing the house of clutter and belongings while she is there to assist him, but he is understandably overwhelmed and sleep-deprived. I think this is too big a decision to tackle at this time, especially since we have no idea if my mother will improve or will continue to decline and eventually give way.

I am desperate to return to assist them again, but my husband wants me here to help him deal with some pressing issues at home (understandable). I am torn, but so very grateful to have had two full weeks of being by my parents' sides. My prayer going into it was to be both unobtrusive and helpful. For my mother, I prayed she would tolerate my visit - she not only tolerated it and recognized me, but repeated constantly how grateful she was for my presence there. My current prayer for my father is for relief from the intensity of stress, the ability to rest and heal, and arrangements for his care when my sister leaves (while he is persistent about doing things on his own and accomplishes amazing things with one arm, including driving, he has some difficulty dressing, bathing, and opening pill bottles or running the magic bullet he uses to mix his health shakes). God has truly blessed in the midst of this trial and has His hand on the direction of our lives.

1 comment:

Anonymous said...

Your dad is a saint! You, your dad and sister are such beautiful examples of Christ! I know these days are hard—especially for you in these sandwich years.