Monday morning was greeted by a phone call from my brother telling me that the nursing home where my mother resides had news of her physical condition. The immediate news from the staff was “Your Mom tested positive for COVID. Currently she appears to be asymptomatic however we will notify you of any changes in her condition”. As I took in the news, I was found feeling both anxiety and relief. Anxiety due to the very words… COVID positive. Relief in knowing Mom appeared asymptomatic. Phew! Dodged a bullet so to speak, so far.
My Mom suffers from Lewy Body Dementia. The conditions at home did not permit her to stay in her own home due to many reasons. We tried our hardest to take on this deteriorating condition, however her safety was the greatest concern. At the beginning of her disease process she was verbal, ambulating, recognized people and could care for most of her immediate needs. Her confusion was exhibited in hallucinations, wandering, and paranoia. Dementia is extremely hard on the person with the disease, but equally as difficult for those who are caregivers. Dementia happens in stages. The person begins to notice that ‘things’ aren’t correct within their own minds. They grapple with reality as it is, and their perceived ‘reality’. Frustration ensues, anger, and of course confusion is noted on their part. Those who suffer realize that something just isn’t right and become unable to decipher their own thoughts.
I consider myself fortunate that my 36 year career in nursing was met with many patients who suffered from dementia. It is a slow, insidious disease. Changes in mental functioning, ambulation, fine motor tasks, speech and many other physical deteriorations are noted. Many assume that a patient with dementia suffers only in waking hours of the day. Not so, as caregivers know all too well. The term used for dementia patients with exacerbations during the ‘night time’ hours is called Sundowner’s Syndrome. Not the most original name for this condition, but accurate for what the dementia person goes through. Sundowner’s is a state of being where the symptoms of confusion and reality collide 10x worse than what is exhibited in the ‘daytime’ hours. Caregivers are acutely aware of this as they are the ones trying to help the patient, whether at home or hospitalized. Working the overnight shifts at the hospital brought me face to face with these all too real challenges. Dementia is a 24 hour a day disease.
My Mom was found in her neighborhood wandering in her pajamas trying to find her home and her husband. Fortunately, my Dad notified the neighbors of her beginning dementia and they would call him and let him know they had found her wandering outside and brought her home and were sitting with her until he could arrive. Her dementia was sporadic at that time. Some days she was coherent and on top her game mentally. Other days she was lost inside her own mind. As the disease progressed it became impossible to keep her at home. Over the course of time my Dad became suddenly ill and succumbed to his newly diagnosed cancer. His passing created a ‘care’ void that my brother and myself were unable to fill. Thus the nursing home was the best solution.
For the past 2-3 years Mom’s dementia has progressed to lethargy, complete absence of recollection as to ‘who’ we are or even knowing our names. Difficult, yes. To experience your loved one’s progression tears at your heart. The person, the very essence of ‘who’ they are is slowly being edged out by this crippling disease. When grappling with the realization that things are not going to ever be the same…..you process their ‘death’. It sounds harsh, Yes, but with dementia the caregiver’s and loved ones suffer with two deaths. The death of the person’s mentality with all it’s memories, thoughts and love. Then of course when they pass, it is their physical death. This process begs the question, “Is a person defined by their physical presence or their mental, emotional and intellectual abilities?”
The reason for this question is the next phone call received from the nursing home regarding Mom. We were asked what ‘heroic’ efforts we wished be performed in the event of her passing. Quickly her condition with COVID has gone from good to worse. Restrictions are in place regarding visitation. I have been unable to visit Mom for 9 months due to the pandemic situation. Understandable, yet still frustrating. I believe more so for my brother and I, than for her. She has no concept of her surroundings. Still, the thought of her passing away alone in a room without being able to hold her hand and comfort her is gut wrenching. Even through my own physical absence from her side, I know Jesus is there.
“Colleen”, you ask….”How can you be sure?” Romans 8:38-39 states, ” For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height, nor depth, nor ANYTHING else in ALL creation, will be able to separate us from the love of God that is in Christ Jesus our Lord”. I accept that promise and believe it to be true. Even dementia cannot separate us from the God who loves us! When I was able to visit my Mom, pre-COVID, my visits would always end with a kiss on the cheek and I would say, “Mom, I love you. You are an amazing mother! Jesus loves you….never forget that!” Although my name was lost to time, miraculously, she knew the name that is higher than any others. Mom repeated back to me softly ….”Jesus”. Although her mind is ravaged by this disease…..she still knows Jesus.
“Behold, I tell you a mystery; we will not all sleep (death), but we will all be changed, in a moment, in the twinkling of an eye, at the last trumpet; for the trumpet will sound and the dead will be raised imperishable, and we will be changed. For the perishable must clothe itself with the imperishable, and the mortal with immortality, then the saying that is written will come true: Death has been swallowed up in victory” ~ 1 Corinthians 15:51-52.
So, the answer to the question I asked before is, “Yes, even if the physical shell of a body remains without the memories, emotions and intellect….there is life.” Saying that however, our family decided that only comfort care would be our choice for Mom. No heroics. No keeping her physically present in the here and now should the time come for that decision. Our memories defined who she was. The ‘used to be’s’ of yesterdays long gone. Our Mom, the woman she was are far from these present circumstances. We have decided that whatever transpires we would let her go peacefully to the side of her husband of 56 years, her son who passed away as a newborn, her parents and all those she loved in this lifetime that have gone on before her……and above all….to the side of Jesus!
My prayers are for all those suffering illness, both physical and mental; find comfort in the loving hands of Christ. May the caregivers find strength in the knowledge they are appreciated, supported and not alone in their struggles. Amen~ my brother
Encouragement for the Sojourner 