It has been a while since I have written in this blog. Since my last post, so much has happened. I have many half written blog posts and many electronic sticky notes with ideas and random thoughts, but as much as I enjoy writing, it just hasn’t been flowing. Writers block? Sidelined by life? I don’t know what starts and stops the ability to pull together an entire post but here I am tonight, after months of nothing, feeling the urge to write.
I’m sitting up in my dad’s spare room. Mike is snoring on the blowup bed we brought down to avoid the sofa bed we have slept on four times in less than a month. The thing that has brought us here this time is probably the driving force behind this itch I feel to tell the latest in our ongoing story.
I’m sure you have figured out by now that the subject matter is my mom. I’ve been on quite a ride lately with starting a new job, relocating, selling our home … but the thing that is on my mind the most, the thing that keeps me traveling up and down the gorge and the 5 like a long haul trucker, is my parents. And with that intro, the story begins.
Mom has been falling a lot lately. The first few times were relatively harmless falls onto her bottom. One of those falls prompted a visit with her doctor and a series of X-rays. You see, when you are dealing with an Alzheimer’s patient, you don’t know what pain is real and what pain is a result of other anxieties going on in their world. While mom still professes to want to go home, the reality is, any trip outside of her normal surroundings at The Waterford Grand is hard for her. This is a very common thing with dementia. She has learned her new environment. She knows what is expected of her. She knows the routine, how to get to the dining area and how to return to her room. Take her out of that cocoon and her mind has to work so very hard to try to adapt to a new situation, cope with the unknown and engage with those around her that it devises a diversion. We have seen her manifest symptoms of pain, become extremely cranky and even lose her bowels – anything to distract and coverup the fact that she can no longer function normally outside of her routine. In this instance, going to Dad’s 90th birthday celebration brought on complaints of a sore bottom that started out minor and escalated as the day wore on. Not knowing what is real and what is anxiety-driven Mom’s doctor leads with an abundance of caution and we shuffled down the hall where X-rays confirmed that there was no injury.
The two most recent falls have led to emergency room visits and that brings us to last Wednesday. After a fall earlier in the day The Waterford called to let me know Mom was displaying some unusual symptoms and they felt she should be transported to the ER for testing. At the ER they discovered a urinary tract infection and that is when I learned about the Alzheimer’s – UTI connection that prompted a recent Facebook post. In the ER Mom was experiencing hallucinations so the staff decided to have her transported to the ACE unit at the old Sacred Heart hospital in downtown Eugene.
I am going to deviate from my story for a moment to sing the praises of the ACE unit. ACE stands for Acute Care for Elders and it is a valuable resource for our geriatric community. They specialize in elder care with the additional strength of handling even difficult dementia patients. They are a top notch group of people focused on meeting the needs of our old people. I love them.
Wednesday evening went well and Mom was so chipper Thursday morning that Dad was sure she would be released later that day. Then all hell broke loose. During a break in an all-day meeting I called Dad to see if Mom has been released yet. Dad answered and from the panic in his voice I immediately knew things were not going well. Mom had suddenly become verbally abusive to her caregivers, was refusing to eat, and had ripped out her IV. Dad put mom on the phone hoping that I could calm her down. She was in full on conspiracy mode. Incoherently ranting about them taking her clothes, holding her and Dad hostage and poking her with needles in her legs. I wasn’t really able to calm her, but was able to get her to a point of resignation where the nurse felt he could get done what he needed to do. I hung up the phone and returned to the meeting which was back in progress.
About an hour later my phone begins to softly buzz. Checking the display I see the number is from the ACE unit. I slip out of the meeting to take the call. It is Mom’s nurse saying Mom is asking to talk to me. He puts her on the phone and the rants and disjointed thoughts come pouring out. She is all across the board but the main theme is her clothing – they have taken it all away and are going to burn them. She wants to know where Mike is – she says he’s a big guy and will take care of this problem for her. At one point her voice returns to a more normal tone and cadence and with a little desperation she asks “Oh Jann, what are we going to do when the sun comes up tomorrow?” I start to cry and respond “I don’t know Mom, I just don’t know what we are going to do when the sun comes up tomorrow.” After a slight pause, and with a sigh, she seemed to lose the driving force behind her anger. With assurances that we will buy her new clothes and that I will talk to Mike about helping her out, she hands the phone over to Dad.
Dad, now there is another concern. While he is a 90 year old man with the appearance of being 70, these situations are rough on him. He is distraught. I finally convince him to leave Mom in the care of the experts who are trained to handle these situations and go home. He has such a bad night, fueled by his age and anxiety, that he does not return to the hospital on Friday. That is all for the best as Mom gets so out of control Thursday night they put her in a Soma bed for her own protection. Bear with me here because this is where my warped sense of humor and twisted coping skills begin to emerge. Here is a picture of a Soma bed:
Here is what I visualize:
When I think of Mom that is all I can picture … she’s in the circus car heading to the next show. It makes it easier to handle the stress of the actual situation we are dealing with.
Throughout this time I have been in constant contact with the nurses station. They are great at providing updates. At this point we are allowing them to get the situation under control. There is nothing we can do and Dad decides to stay home again on Saturday. Mike, some friends of ours, and I are just getting ready to eat breakfast Saturday morning when the phone rings. It is the doctor this time. I immediately know the rubber is about to meet the road. The doctor gives me a brief update – Mom has went into a period of excessive sleep, refusing to wake up even for meals. She has developed a slight cough that could be an early sign of pneumonia. And then the doctor, with compassion in her voice, asks what our goal is with the situation. I hesitate as my brain processes … just as I am beginning to understand the underlying meaning of her question she clarifies. Is our goal treatment or comfort?
Treatment? Or comfort?
Treatment. Or. Comfort.
TREATMENT OR COMFORT!!
And just like that, here we are. We are at the place we knew was coming. The realization that Mom’s quality of life has deteriorated to the point where the goal is no longer to extend life but to allow her to ease into death.
I ask several questions and then let the doctor know that I will confer with my dad and will call her back with our decision. I know what our answer will be as we have discussed this … but I still have to allow Dad to make the final decision. I call my sister first just to confirm that we are on the same page and to ensure she can go stay with Dad if necessary. After hanging up from that call I take a deep breath and dial Dad’s number. I outline the situation and he begins to cry, but through the tears he says “Yes, just make her comfortable. She isn’t living at this point.” He hates seeing her continue to decline and knows she would not want to continue living this way.
I call the doctor back and let her know our decision. She thanks me for making the hard call. She says it is the right thing to do as at this point we would treat her only to be back in the unit again … and again … and again.
This does not mean that death is eminent, it just means that we will let nature take it’s course. We will keep her safe and we will keep her comfortable but we will not try to attain health, wellness and better living through pharmaceuticals. Most medications will be discontinued and they will quit irritating her with finger pokes to check her blood sugars.
Mike and I came to Eugene on Sunday. Mom has remained in her almost continuous state of sleep, waking to occasionally use the restroom and have 2 or 3 bites of food. We went to see her in the late afternoon. She roused enough to visit a little. The rants are gone and she is no longer in her circus cage. I manage to get her to eat a few bites of cantaloupe and mashed potatoes but she keeps nodding off so we say our goodbyes and head back to Dad’s.
Mike said that watching me feed Mom he saw the cycle of life. Yes, God willing, we eventually come full circle. The parent becomes the child. The child becomes the parent.
Today we meet with the care team to discuss prognosis and next steps. I don’t know what the day will bring, but in the way that life tends to teach us, I know we will learn things we never wanted to know. It will be hard, but we know we are on the right path. Releasing Mom from the daily hell Alzheimer’s has caused is the kindest final gesture we can give her.
I don’t know Mom, I just don’t know what we are going to do when the sun comes up tomorrow.