It is a beautiful hot, sunny day in the Upstate of South Carolina. For many years, when I came to see Mom this time of year, we would be sitting outside, with a tall glass of iced-tea. Mom would most likely be smoking a cigarette or have one lit on the ashtray and we would be talking about the latest family happenings, politics, or reflecting on the past. There is always something (or someone) that she wanted to talk about.
Our journey has been a long and winding road, and today that road is sitting in a hospital room while she dozes. The 62 years of smoking Kent and then a cheaper brand of cigarettes, combined with age bring us here – 87 years old, five foot tall female of mostly Irish heritage with COPD, CHF, CKD4, pulmonary hypertension, Type II diabetes, Osteopenia and AFIB. And today is the day we add hospice and palliative care to the services she will receive when we transport her back to the skilled nursing facility where she has resided the last 2 years.
The medical world like the government tends to use acronyms, and with so many conditions, it is just easier to rattle them off. COPD -chronic obstructive pulmonary disease; CHF – Congestive Heart Failure – the type in which the heart muscle never fully relaxes to allow the heart to fill up with blood which results in the heart pumping less blood when it pumps – and having to work harder to do its job. CKD4 – Chronic Kidney Disease Stage 4 – means when they give the medication to draw the fluid build up in her chest off (what they call ‘volume overload’) they have to monitor the creatinine levels to make sure they are not so elevated as to suggest the kidneys will shutdown. Its a bit of a medial balancing art. Throw in the pulmonary hypertension and that is another balancing act with the medications. She has some swallowing issues as well so for the last year she takes the plethora of medications in apple sauce. Watching the nurse deliver these meds on a spoon of apple sauce…or three spoons of apple sauce because there are so many pills.
Her osteopenia has meant that her bones are deteriorating – her spine is literally collapsing on itself, the X-rays show that the knobs of her femurs are wearing down – and there is no longer any cartridge between the hip socket and the knob of bone…so every movement of her hips or legs is agonizing. For the last 5 years, she has only made it through the day with opioid pain relievers. With all the policy discussions on opioid addiction, Mom is one of the people who actually need opioids for a chronic health condition. Of course, with opioids come the side effects, potential of reduced respiration; and the ever present OIC – opioid induced constipation…a conversation for another day.
The advances of technology and electronic health records, mean that I can read her test results in real time when she is in the hospital (I wish the nursing home had this system as well but they do not.)
Mom is like a totally different person than she was just a few weeks ago. She had what is known as a sentinel event with her CHF – her chest cavity and lungs filled up with fluid. Her weight listed at the hospital was 12 pounds more than the first of the month, so she really was overloaded. Now she sleeps almost all the time, is seeing people and things that the rest of us are not seeing, is having life review situations where she brings up from decades ago that she has not resolved emotionally, she has body shakes now that were not present a month ago. Her hearing is greatly diminished in the last few months as well.
My emotions are all over the place, naturally. It’s my mom, we have a close relationship, and we are facing her mortality. The word faith comes to mind. And gratitude, and grace. I have a very strong faith – a sure knowledge that when she takes the last breath here, she will take her next breath in another dimension, what Christians call Heaven. Gratitude comes to mind because she has lived 87 years …I’ve had friends who whose mother passed when they were in their twenties. I am grateful that my children have known her and even one of my grandchildren. I have gratitude that family, friends and colleagues show such compassion during these tough times. A finally grace comes to mind because yesterday when the doctor sat down with her to talk about adding palliative care to the mix, she had the grace to cut through the delicate verbal dance and accept that he was suggesting hospice. And for the first time she did not shy away from that discussion as she had with me the few times we have discussed the eventualities. She is what is known as a full code – she wants every extraordinary measure taken to keep her alive…that is a conversation for another day as well.
Mom’s nursing home is about a quarter mile from the hospital but it requires an ambulance service to transport her. The paramedic team are sweet young men both moved here from out of state and really sweet with Mom. When she returns to the nursing home, we find her room has not been cleaned as I requested (twice)…and there seem to be no staff anywhere around, it is amazing how few staff on are on duty in the cottage even during the daytime. The paramedics have to hunt the nurse down to do the hand off of paperwork.
One of the ladies who is also a long term resident rolls herself over in the wheel chair to say hello to Mom – who is trying to rest in her recliner – and who gets frustrated because she can’t hear what her neighbor is saying. There was a sweet exchange and then her friend sings her a sweet hymn and Mom perks up and shares what she sees during the singing. Hallucinations or veil parting – a conversation for another day as well.
Today is a day focused on getting mom settled in and extra services – that the nursing home staff did not immediately return calls to the hospice team – after 5 calls by one staff and then calls by the clinical director; and only after I made two calls did a phone call get returned – but because the one person who could sign the contract to allow hospice in was not in town, nothing happened – so Mom’s services are delayed a day. Even though her faculty is so much better than many places, it still leaves a lot to be desired when things like this need to be done.
I sit with her when her meal arrives – she is served roasted boneless chicken breast – with rice and squash, and 3 slices of canned peaches in a bowl, with a salad – what we went through for her to getting a real tossed salad is also a story for another day. And like everyday, they do not provide a knife for her to cut her meat – they never do, degrading my mother, the former Home Economics teacher who taught her students etiquette and who used to wear a hat and white gloves just to go to the grocer store when I was little, is degraded by the facility staff to and left to pick her meat apart with her fingers. She no longer gets upset about these things….but just because she does not speak up does not mean she is not effected by this. She is hungry tonight and eats about half of her food.
After dinner, she is ready for a shower and sleep. The day shift wanted her to ‘wash the hospital germs off her’. Mom just wanted a good shower which nursing homes only provide 3 times a week. I make my exit for the night and prayed that the team her care is entrusted to would do their job.