MEMORIES WE SHARE – Part 16

Your eyes hold that glassy stare this morning that tells me you are in there somewhere but buried deep. You walk past me without a word as I say good morning and head for the front porch.

“Where you going, hun?”, I ask trying to keep the concern from my voice.

“”Bathroom”, you grumble.

“Ok, but it’s this way, turn around and come back this way.” My heart sinks and my nerves are already shot anticipating a long day.

While you’re in the bathroom I make toast and get your coffee ready and put the morning dose of medication onto the bed table. You come back with a chocolate Ensure and push the coffee and toast aside. I tell you the Hospice nurse will be here soon and you stare at me, blank. The t.v. is on but with no volume again as it has been for the last couple of days.

Soon the nurse arrives and notes as you retreat back into the bathroom that you seem agitated. I agree and ask her about having you go into the hospital for a medication adjustment. She agrees and says she will talk to your care team and the Hospice doctor.

We spend a long day and night, barely speaking. You are tense and short when you do speak, demanding what you want instead of asking. I cringe as you ignore the large buttoned landline phone I got so you could make calls as the cell phone confuses you. You have managed to hit text twenty-seven times and enough letters for it to count as you search for the way to make a call. We get four free texts a month on our phone plan so there will be additional charges. I discovered this as I reset the ringtone to loud for the umpteenth time after I discovered we were missing a lot of phone calls. I’m hoping if the call comes in from the nurse I will be able to see it before you manage to erase it.

When you seem more calm I approach the subject of you going into the hospital to have your medication adjusted and explain that it is beyond what I can do for you here at home, as we had tried before with finding the culprit that was causing your spasms. At the last staffing, the pharmacist suggested we remove Crestor from your pills as these have been known to destroy muscle over a period of time and cause spasms. No one, including me, really believed it would be that simple but you are on day five without them and have only thrown the Ensure to the floor once and burned yourself and your clothing with a lit cigarette twice, a large improvement that I am extremely grateful to see. Our carpet shampooer has finally stopped working all together and as I take it apart and check the price of replacement parts I realize we will have to go without one for a few months until I can pay down some of the bills that have been piling up.

Friday comes and you sleep late once again. I rise at four a.m. out of habit now and make coffee, sitting outside with a steamy cup in the morning chill. Fall is coming and Summer has been an inferno that has left our yard barren of grass but the weeds have thrived and need cut again when I find time. I am pensive about bringing up this subject of hospitalization with you when you wake but I want to discuss it before the nurse comes. We spoke briefly of it last night and you said you would think about it but who knows if you will remember the conversation.

Before nine o’clock, the nurse, a substitute for our nurse who will be on vacation all week, the Home Health Care Aide and the Hospice Chaplin all arrive within minutes of each other. Only the Chaplin was scheduled before the confusion had begun to worsen. I wonder how you feel with all of these people here asking you questions, taking your vitals, and finally telling you it is good if you go to the Hospice unit at the hospital. They tell you that you are confused and that I am exhausted and need to rest. You are not pleased with the idea and want to know how long it will last but finally say that if I need to rest, then you will go. I retreat into the bathroom this time and muffle sobs of relief and guilt with a towel.

We arrive by three p.m. and I’ve made sure the doctor has written an order for you to be able to be taken outside for a cigarette if a visitor is there to take you in a wheelchair. We get the same room you were in just a couple of weeks ago when you took the over dose of medication, old home week. I go about putting away our clothes, toiletries, plugging the cell phone into the charger that I remembered to bring this time and a nurse and then a hospitalist come in to evaluate your health and mental state. I bite my tongue and let you try to answer questions that you have no answers for, except the day. You don’t know the year, get the hospital name wrong, the date, the year and yet they ask you what medications you’re on and when you take them. They ask what brings you there on this day and you tell the hospitalist that it is the burning pain in your right thigh. You are on enough medication to bring most men to their knees but that pain seldom goes completely away for more than a few hours. You have had this nerve pain for many years before the COPD and have never been given anything adequate for pain relief.

There is one nurse and one aide, the usual staff for this unit of only six rooms. There are actually three patients this time, including you. Last time it was you and one lady dying of Cancer. Every time I leave the room, to get water, use the visitor’s restroom, any chance the nurse gets to speak with me, she tells me to go home. I just got there! You still are not sure exactly where you are and certainly not why. I will go home when I am ready to. She says I seem exhausted. Actually, I am relaxing now that there is a plan to investigate what is causing the confusion. I am sitting in a comfortable reclining chair, I have back up if you become agitated, our pets are being looked after at home, I have no cleaning or cooking to do … I am resting. My daughter arrives with the electric cigarette I have her pick up for you so that you can use it as a replacement when I do go home and there is no one to take you outside. You love this new toy and walk up to the nurse’s station puffing away and blow steam in their faces! I do nothing to control you because the nurse tells me they need to see how you behave and what your level of confusion truly is. They are not amused by your antics. My daughter and her boyfriend have brought food from Burger King and it smells good. Your tray finally has arrived too, at 6:20 p.m. I take the opportunity to ask the nurse privately when you are scheduled for your evening medication. If they don’t give it soon it will be the middle of the night before your next, every eight hour doses. She tells me the Dilaudid, Valium and Haldol are now restricted and on an as needed and as asked for basis only and that you, not I, need to ask for them. My daughter has followed me and is listening to the conversation.

“What if he can’t ask for them?” She is a CNA and has worked extensively with the elderly, especially patients with Alzheimer’s Disease.

The nurse replies that she sees no reason he can not. My daughter says he can’t find the call light, let alone know and remember that this is how to get help if he needs it and he had tried to use the phone to turn on the television not fifteen minutes before. She goes on to say that she knows him and his confusion gets worse as the night progresses. The nurse says this is not extraordinary and tells me again that I need to go home and rest. My daughter turns on her heel, mouth tight and refuses to further what is about to become an altercation. I tell the nurse I would think about it but would probably spend the night and go home in the morning.

You are sitting in the bed, cross legged, happily eating my dinner and half of my daughter’s while watching a show her boyfriend has found for you on t.v. She and I agree that my spending the night is going to afford me more rest than going home and worrying whether or not you are receiving the care that you need and I pick at your dinner tray and follow it up with some iced green tea and citrus. We all troop past the nurse’s desk and the aid asks you if the fake cigarette is not enough for you. You have no idea what she is talking about because you still think the cigarette is real and I have reached my limit and reply that it is fine but that all four of us smoke so we are going down for our “fixes.” Are they out of line or are we just overly protective and sensitive? Either way, I am not leaving.

During the night you get up and leave the room and I resist the urge to see what you’re up to. Not a blanket or pillow is offered to me so I find an extra sheet and take a pillow from the extras in the hall closet. Not once did anyone come in to offer you so much as a glass of water, check on you, take your vitals or do any other type of care. My only guess is that they prefer their patients dying and less demanding.

Morning comes and I go to make coffee and find the pot is gone so I pour us two cups of the horrid instant that gives me indigestion and make sure you are dressed and we go down to our car and have a morning cigarette while I tell you I’ll be going home for the day and might return in late afternoon and spend the night. Your mind clearer today and you say that I need to rest, that is fine, that you’ll be okay. I explain about the need to ask if you need pain medication now and if you feel anxious to ask for the Valium. We go back up to the room and I can’t contain the tears and leave without looking back, feeling like I have deserted you. I almost fall asleep driving the twenty-seven miles home and once here make some toast and some real coffee and promptly fall asleep.

The phone rings and a nurse from the hospital is telling me the hospitalist has written your release order and wants to know when I will be there to pick you up. I tell her to let me wake up and drive in and I’ll be there. I find my glasses and look at the clock. It has been three hours since I left.

It is now Sunday night and each hour seems to find your mind a little more clear. You have had to have Dilaudid for break through pain but have had no Valium or Haldol and only your regular doses of the other medications. I should be rejoicing and I am that your confusion seems to be lightening. But when I read you the report from the breathing tests you took on Wednesday you completely floor me by telling me that even though it says your COPD is in the moderately severe range, at a FEVI rate of 77% in a range of 50% to 80%, so not actually in the very end stages, you really don’t know if you want to try to do anything to fight the inevitable. Stopping smoking and using some of the Anticholinergic bronchodilators could mean months more of life as long as your heart doesn’t give out and you don’t get sick with a cold, flu or such but you have been preparing to die and are not changing gears so quickly … maybe not at all.

I will pray for guidance once again tonight. The choice has been yours all along and will continue to be but, just maybe, you will begin to feel differently.

Important information for caregivers:

The Caregiver Stress Checklist

• Am I easily agitated with those I love?
• Am I becoming more critical of others?
• Am I having difficulty laughing or having fun?
• Am I turning down most invitations to be with others?
• Am I feeling depressed about my situation?
• Am I feeling hurt when my efforts go unnoticed?
• Am I resentful when other family members are not helping?
• Am I feeling trapped by all the responsibilities?
• Am I being manipulated?
• Am I missing sleep and regular exercise?
• Am I too busy for quiet time with God?
• Am I feeling guilty when I take time for myself?