Ok. Here is the story:
My mother has rheumatoid arthritis. It is an autoimmune disorder which causes swelling and pain in her joints. She has a number of other health concerns as well, but this particular story is concerned primarily with her arthritis. Several summers ago, while she was awaiting diagnosis and treatment she was extremely limited in what she could do: her toes curled beneath her painfully, causing imbalances and difficulty walking; her knees and hips weren’t cooperating either; her shoulders wouldn’t let her bend in ways that allowed her to put on a shirt; and the knuckles on her fingers were swollen and painful restricting her from…. gardening, cooking, self-care. Getting in and out of a tub became a horrid chore, not to mention a dangerous activity. She needed help rising from the toilet. None of this was good.
She was referred to a specialist who has been compassionate, kind, diligent and generally a godsend. And her medications have been adjusted to the point where she is perfectly capable again of self-care, and looks forward to dealing with her flowerbeds this coming Spring (should it ever arrive, God-willing!). She’s on a combination of medications which interact to treat the arthritis resulting in both a complicated and continually evolving schedule of medications and a much higher quality of life; although there are side effects which aren’t ideal, the end result still is an improvement.
My mother is 80 years old. She will be 81 this June. Many times over in her life she was not supposed to make it to ‘fill-in-the-blank’. “She won’t make it to morning. Best build a casket”, my grandmother was told when my mother was wee. And then again several times after that during childhood: scarlet fever, mastoid fever, pneumonia…. one of these resulted in such a high fever that she suffered some brain injury and has had difficulty with processing speed ever since. All my life my mother has needed time to think things through – we all knew as kids if we wanted to go to a birthday party on Friday we’d best ask about it Monday; asking on Thursday didn’t allow enough time for her to think about it and the answer would be a straightforward and solid ‘no’. As a teenager my mother contracted Tuberculosis somehow and that, together with a nervous breakdown, resulted in her lying flat on her back for a full winter in a poorly sealed room with a window that was so decrepit it let in the snow onto her covers at night. The cool air though is credited with her recovery. My mother was told when she was a young wife that childbearing would kill her – she didn’t have the physical structure or strength to bear up under it. Her five children though, all healthy and well, would belie that claim. Mom was told by a doctor that she’d never live to see the age of 30, but that if she did she’d likely live to see 70 as well, but only as a ‘vegetable’. However, at 70 my mother was tending to her own vegetables, a garden on a half acre lot – not very well, mind you, but that’s where you’d find her in July.
Mom never aspired to old age. Her older brother did – he wished to be a centenarian. He passed away a few years back – his family cremated his remains and dealt with him as he wished. My mother, however, has often said without a hint of anguish or stress that she’s quite ready to pass on any day now. “This growing old is for the birds!” She points out quite rationally that she’s had a long and satisfying life, she’s done what she was put here to do and is more than ready to go join the other members of her family who have had the good sense to leave earth when the time came. She’d like to visit again with her mother with whom she has not had a conversation since she was nine years old.
There is no indication that Mother’s body has any desire to give out on her at all. Although, having said that, my poor mother does get addled on occasion. She sometimes forgets when people have called to chat – people call to chat anyways, and I’m grateful for that. Sometimes, if you give Mom too many instructions too quickly they get all jumbled in her mind and she can’t remember which steps you said to do in which order, or that she’d received those instructions at all. Childhood brain injury aside, her body is aging and with that come some, um, not inevitable, but predictable perhaps, maladies. Don’t all senior citizens require some extra supports in one way or another? My mother needs time to think, routines to predict, simplicity to function independently. But isn’t that pretty common with our aging population? And what is wrong with that? Not a thing. Seems to me she’s doing fine and could be a lot worse.
So what is with the present health care system that has sent my mother through a psychological obstacle course just to get a simple needle? When my father required open heart surgery (quintuple bypass) we never once to my knowledge had to intervene in order to figure out the procedures he needed to follow. The instructions were clear, straightforward, easy to follow. The arrangements were made and we were informed about where he needed to be when. Everything and everyone was ready and the surgery was a wild success. The man will be 82 in May and the biggest challenge he currently faces is how to open his email on his new android tablet without downloading the dreaded internet viruses he keeps hearing about. Trying to get a simple injection arranged for my mother though is requiring the skills of an international negotiator. I’m just not up to it. Obviously.
But Mother needs an increased dosage of one of her arthritis medications. This requires moving from the ease and convenience of taking a four pills on Mondays to having an injection once a week. Her specialist, who ordered the change, told Mom that her doctor would make the arrangements. Mom went away believing that all would be simple and clear.
Nope. Not so much.
So Mother went to her doctor who understood what needed to happen. He is a kind man and told Mom that he’d arrange for homecare to come to her house once a week to administer the injection. Mom was thrilled – what could be easier than that? Nothing. So all was well until the homecare organization contacted Mom to tell her that they didn’t do housecalls of that nature anymore; that the medication Mom required was a “chemical” (aren’t all medications chemical compounds??) and that homecare refused to deal with those chemicals.
This is alarming. I am sorry. But if practitioners trained in the daily care of patients in their homes are concerned about administering the medicines prescribed to seniors who have difficulty managing their calendars let alone “chemicals” then who on earth is going to give this shot to Mom every week? Mom, rightfully, was considerably ruffled about the use of the word “chemical” over medication. I told her all medications are chemicals. This is not reassuring however; I wasn’t even reassured by it.
Mom went back to her doctor to tell him that homecare refused to come to her home. The doctor was taken aback. Evidently he was not aware that there was a change in the program and that this option was no longer available. He immediately told Mom that it was okay, that he would administer the injection himself right there in his office for her convenience. See, this is what I like about this guy: he is very considerate of his patient. He sees an elderly woman who requires some emotional and psychological supports during times of change and he is there for her. Mom was relieved. The doctor said that Wednesdays would work best for him and that he would make arrangements; that Mom would get a call telling her about her appointment later in the week.
Later in the week Mom called the doctor’s office back. They at the main desk had not heard from the doctor yet and told Mom they’d get back to her. Meanwhile, Mom had to leave town. Being very concerned – she’s running out of her medication in pill form and these injections mean mobility and independence – Mom called me to ask if I’d check in on the matter of the appointment while she was out of town and that she and Dad would certainly be back Tuesday afternoon in good time for an appointment Wednesday. This seemed entirely reasonable and I quickly agreed.
Monday morning I called the doctor’s office. His receptionist was out but I was speaking with a woman at a switchboard of some kind. I told her the dilemma. She checked the doctor’s notes and sure enough – there was a note left for his receptionist to make an appointment for my mother for Wednesday at 5:00. Excellent. I called my mom at my sister’s to let her know and all was well.
Wednesday at 4:30 I arrive at my parents’ home to pick up Mom for her appointment. I walk in and Mom is on the phone, clearly distressed. She gestures me in with angry hands and by the time my boots are off she is hanging up the phone and trying to find a paper to write on.
Mom: I don’t know. I don’t know! Where is there a paper?
Dad: Right there, on the counter.
Me: What’s up?
Mom: I don’t have an appointment today.
Dad: She has to go to the clinic on 8th now.
Mom: I’m not going.
Dad: Do you know where that clinic is?
Me: Which clinic? Mom, why aren’t you going? What happened to your appointment?
Dad: It’s on the note there, the address to the clinic. I just got off the phone with them.
Mom: Damn system. I need to talk to [my specialist]. I’ll just stay on the pills.
Dad: She has to go in the basement there and get the needles.
Mom: But Dr. B said he’d do it for me, Wednesdays. Three times he said that it would be easier for me. Wednesday appointments would work.
Dad: Something about needing to go to the pharmacist.
Me: What? Slow down. What’s happened?
So, it turns out that Mom had the good sense to call and confirm her appointment for 5:00. She was told that her next appointment was for May 1st; she never had an appointment today at 5:00; that she was told to call ‘this number’ *hands me an envelope with random notes on it* and make an appointment to get the needle herself.
I still can’t get the story straight so I call Dr. B’s office and get the switchboard operator. Bless their souls – these people solve problems on the phone all day long for a living. And while I’m blessing people’s souls, may I add how much I appreciate that doctors’ receptionists are also patient with me (“Hi. I’m Soandso, SoandSo’s daughter, calling to get information about SoandSo’s appointment/instructions/etc.”). She informs me that Mom could not have spoken with Dr. B’s receptionist today because Dr. B’s receptionist wasn’t in today. I tell her that my mother just got off the phone with the receptionist; that I myself confirmed this appointment just on Monday. “Oh, is your mother DT?” Indeed, she is. The operator asks me to wait a moment. And in a moment she’s back, telling me that Dr. B’s receptionist is also Dr. L’s receptionist and that Dr. B isn’t working today but Dr. L is and that they share a receptionist, but that Dr. B’s files are closed because the receptionist is actually at Dr. L’s desk and that if I’d like I can talk to Dr. L’s receptionist to find out what’s going on with Mom and Dr. B.
How on this fine earth is a senior citizen supposed to follow that??? I nearly needed a concept map to get it straight. But yes, of course, please, may I speak with Dr. L’s receptionist then?
Dr. L’s receptionist, the same woman who works Dr. B’s desk and therefore is also Dr. B’s receptionist but today isn’t the day to admit such things, clarifies who I am. I tell her and she realizes what has just occurred. She apologizes saying, “I realize I gave your mother a lot of information at once.”
Yes, yes you did. And confused her all to upsettedness to the point where she doesn’t trust you anymore. Well done. But of course, I don’t say that. The sane part of my brain is thinking about how many people skills are being demanded of receptionists everywhere at virtually the same time. Still, who in the public sector doesn’t know to slow down and listen to your client? To consider your audience’s needs when communicating? That the purpose of communication is to get an idea across clearly and simply? That to leave the ‘other’ with more questions than answers is to have communicated poorly??
Okay okay. I know. Many people in the public sector don’t know this. Or don’t do this. Or simply can’t do it when also doing four other tasks. Or it was just a bad moment for everyone. Alright.
Mom is pacing in circles, going from one room to the other, and, due to the layout of their home, consequently in my line of vision to the left in one moment and in my right ear in the next. She’s rattling pots and muttering to herself in frustration.
In the end the receptionist explained to me that although the doctor did leave a note (she did not comment on the switchboard operator’s initiative in telling me about the note) the plan has changed and that Mom needs to get the injection at the local community clinic. Was I familiar with the place? Yes, I am….
Mom yells something from the kitchen in my right ear and I miss what the next instructions are. I hold a hand up to Mom who sighs in frustration while I apologize to the receptionist and ask her to repeat herself. She begins again at the beginning without so much as a sigh in her voice.
…. and that Dr. B has already made arrangements for Mom to go there to learn to inject herself with the medications so she can take care of this at home at her own convenience. I raise an eyebrow. “Oh?” Dad leans in closer. Furthermore, says the receptionist, Dr. B has already sent along the referral form and it should be at the clinic shortly. I jot down this information and ask if she can add my name and numbers to Mom’s files, in case there are changes, that if she can’t get hold of Mom would she call me? She smiles through the phone (I love how we can hear that!) and agrees. I thank her and hang up the phone. Dad and Mom are both sitting and watching me intently, leaning forward in their respective sitting places, eyes glued to my face.
Me: Well, it seems that all we need to do is call the clinic and all the arrangements are taken care of.
Mom: Where have we heard that before?
Dad: What arrangements?
Me: We’ll call down there right now (I pick up the phone again) and make an appointment for Mom to learn how to administer the injection herself.
Even as I said that I knew there was a goodly chance that the world would end right there. And I was right. Mom, who had since rattling the pots sat herself back down in her spot, jumped right to her feet – quite an energetic response from an arthritic 80 year old woman! “I am NOT giving myself needles!” Almost simultaneously Dad, who has managed to successfully avoid doctor’s appointments for probably 78 of his 81 years, says, “I am not giving your mother needles! I’m no nurse!” I can feel the heat in the room rise just from their blood pressure alone.
I dial the clinic. “Let’s just hear what they have to say.”
What “they” said was that I’d have to call back the next day because their appointment-making receptionist was gone for the day; they said that there should be no problem in administering the injection – that they give dozens of them a week – that my parents should not have to worry about giving themselves needles.
Awesome. I tell this to my parents. My mother says, “I’m calling the specialist. I’m not doing this. No one here knows what anyone’s doing. And I’m supposed to trust them with my ‘chemicals’? Nope. I’m going back on the pill.”
*chuckle* My mom on ‘the pill’. *teehee*
Me: Mom, let’s just wait and see what we think once all the information’s in.
Mom: I’m only taking four pills a week. I’m told you can take up to ten. I’m only taking four! I just need to get my prescription renewed. I’ll call Dr. N tomorrow and see if she’ll give me the prescription.
Me: Mom, your four pills are as strong as their ten.
Mom: Good grief, do you think I’m stupid? Four doesn’t equal ten. I won’t take them all the time, just when I need them. I can have up to ten a week.
Me: Mom, if Dr. N tells you that you can do that then okay. But you can’t just decide to do that.
Mom: I’m not having needles. This is ridiculous. They said that homecare would come to my house. Dr. B told me he could make the arrangements and that I could just go to his office once a week. Three times he said so!! It would be so convenient and now I’ll just take the pills. I need to call Dr. N tomorrow.
Me: *putting on my coat because there’s no point in continuing until we’ve all had a few moments to think* I’ll call the clinic again tomorrow and make an appointment. I’ll go with you. I’ll call you tomorrow. Just think about your options tonight and you can make a decision once you have all the information.
Dad just looks lost and confused.
The next day, Thursday morning, at work, first thing before I forget, I call the clinic and the operator transfers me to the receptionist who opens her files and finds the referral from Dr. B and says, “Yes yes, she can come in and we’ll give the injection. Just tell her to remember to pick up her new prescription.” “Oh? You don’t have the medication on hand there? We need to make arrangements to bring it with us?” “Yes, we don’t carry those here.”
Nice. I call my parents. It’s early there. Dad answers. I tell him the appointment is for next Tuesday; that I’ll take Mom; but that he and Mom have to pick up the prescription from the pharmacy. Dad asks sensible questions: is the prescription for one injection? If I pick up enough medication for the month does it go bad? What if it breaks and there are chemicals spilled all over the place? Does it need to be in the fridge?
“I don’t know, Dad. The pharmacist can tell you all this. It isn’t an uncommon medication or procedure. I’m sure they’ll have answers for all your questions.” He does not sound reassured but he writes down the appointment date. I plan to call Mom later that night but am just busy and didn’t get to it. Mom called my sister who sent me a note: Mom isn’t going to the injection appointment; she’s already called Dr. N and is waiting to get a reply. *sigh*
Friday after school I go over to help Dad open an email from my sister with a link to an obituary in it. One of Mom’s dearest friends has passed away. Mom wants to talk about this. We do. I tell Mom I’m so sorry she’s lost her friend. She looks at her hands and says she’s sorry too. Mom had tried to call this friend several times and when no one answered she knew something was wrong. I ask if she’s going to the funeral but the funeral was last week already – a small family affair. No one thought to call Mom and invite her. I’m so sad for Mom. She is right. Growing older is not turning into a picnic for her at all.
The subject changes back to her appointment. She vents her frustration that it’s so much work to get at the medication; that she needs it to keep any kind of quality of life; that it was all supposed to be so simple; that she’s taken the last of her medications and there’s none left and now she has to run here and run there and all just so she can survive.
I know. Mom’s childhood diseases left my mother with limited lung capacity. Some days just breathing is hard. She spends a lot of time lying down because sitting upright uses up energy and she has quite a limited ration of that resource. She’s terrified of ice, of falling, of breaking bones. She’s brittle enough as it is. All of this is not making her life easier and it was supposed to. Now she’s confused. The plan has changed through no fault of her own at least four times in a week. And she’s worried the needles will hurt. Already she has to have blood drawn monthly and the nurses have trouble finding her veins. Her skin is thin. Her patience is thin. Her temper is thin. She feels abused and shuffled off and a little battered by the process itself – how bad will the procedure be if this is just the process of getting to it??
This morning I get an email from my sister. She was talking to Mom. There’s an update:
So yesterday my parents went to the pharmacy. Dad and Mom go to different pharmacies for their own reasons. It’s fine. But Mom’s pharmacy is just down the hallway from her doctor’s office and Dr. B calls or faxes her prescriptions to this office for Mom’s convenience. The pharmacists there recognize Mom. They have all her files. And when she’s confused they take the time to call Dr. B’s receptionist – they know she’s the same girl as Dr. L’s receptionist and they have no trouble finding the information Mom needs. Mom tells them some of her woeful story and they say to her that they can fill this prescription and probably she can get the injection right there in the walk-in clinic; that she shouldn’t have to go all the way to the community clinic on 8th; that they give shots there to patients all the time. And it’s just up the hall from Dr. B’s office. Mom could see Dr. B in the walk-in clinic, get the prescription filled, and have her injection all in one place.
“Oh,” says my mother, “that would be so convenient!”
Wouldn’t it just though?
*sigh* Wouldn’t it though?
This evening my mother calls to tell me why she didn’t make waffles with her traditional lemon sauce and invite me over for supper. “Too tired. Couldn’t get up the gumption to just do it.” I laugh. We chat about a few things and I tell her I’ll see her Tuesday. “Tuesday? What’s Tuesday?” “Your appointment to get the injection.” “Oh yes!” She remembers. Good. I remind her she has to pick up the prescription at the pharmacy before then.
“No. They have the prescription there and they’re holding it for me because I can get the needle right there.”
“What do you mean?”
“They told me there that the prescription was ready and that they always gave needles at their office. That the arrangements were easy to make. I left the medicine there and will get it when we go for my appointment with Dr. B.”
“But Mom, your appointment is at the clinic on 8th not at the pharmacy or with Dr. B.”
“No, the pharmacist told me they give the needles there and she’ll make the arrangements. Now I don’t want to talk about this any more. What did you do for Valentine’s Day?”
I laugh. A ploy! “Before we talk about Valentine’s Day let me just clarify….” But she interrupts me, “Oh! Valentine’s Day? What did you say you were doing then?”
“Mother! You are being naughty! Now we have to figure this out!”
She laughs. “Me? Naughty?” But it’s so good to hear her laugh I don’t care and we drop the subject. She’s so confused and there’s no way I’ll get a straight answer from her over the phone. I’ll call the pharmacy and the doctor’s office and the medical clinic and the walk-in clinic and maybe God Himself. I’ll get it all figured out. And I’ll pick up Mom for her appointment and by then I’m sure she’ll be back on the pill anyways. Might as well talk about Valentine’s Day, six weeks ago!
Update as of Wednesday, April 2nd: I pick up Mom for her first injection at the clinic on 8th.
I had made arrangements with the pharmacy for them to deliver the medication to the clinic on 8th directly but for this first time it would have to be picked up. So, Mom and Dad picked up her medication earlier that morning – ~$25.00 – at the pharmacy and were assured they have four injections’ worth of medication and that this will last them a month. They are relieved – they only have to pick up something from the pharmacy once a month. Of course, Dad is all worried they’ll forget: “How will we remember? Will someone remind us?” He looks at me and uses his fatherly authoritative tone on me: “Will you ask the nurse to tell us when they’re out of the medicine?” I remind him that the pharmacy will be sending the medicine directly to the clinic and they only have to figure out how to pay for it: credit card? As if my dad would leave his credit card number with anyone. Nope. they will pick it up and pay for it with cash themselves – “too many crooks out there!” *sigh* Okay, Dad.
So Mom and I leave with the medication in hand. We meet the receptionist who is expecting us. We are ushered into a back room with a wonderful woman who puts Mom at ease. The injection was simple and painless. We are done in minutes. Before leaving I turn to make sure that the medication a) can be stored here at the clinic on 8th safely, and b) that they’ll alert the pharmacy and us when we need it refilled. Yes, I am assured that this is no trouble and, she tells me smoothly, just to let me know, they have disposed of the rest of Mom’s medication for us so we don’t have to worry about that. The nurse makes eye contact meaningfully with me.
I pause. Mom is gazing at a poster of a beautiful arrangement of flowers. “You’ve disposed of the medication.”
“Yes”. She is very calm and professional.
“We were told that there was a month’s worth of medicine in the prescription.”
“Yes, there was. But it said on the packaging to dispose immediately after opening.”
Ah. I see. The pharmacist, bless her soul as well, ordered a product without any preservative, sold it to my parents, agreed that there’s a month’s worth of injections in the vial, understood that the medicine would be stored at the clinic on 8th (forgive my repetition here with the whole ‘clinic on 8th’ thing but I have to repeat lots of things so that Mom can remember them!), and didn’t blink an eye. Oh dear. I turn to Mom: “Mom, do you want to go home? Or would you like to come with me back to the pharmacy? There’s a little problem with your prescription.” Mom opts to join me.
Back at the pharmacy we speak with yet another pharmacist. A nice girl, Mom notes, with a good Mennonite name. Pretty; friendly smile. Indeed. I explain to this lovely ‘girl’ that we simply cannot afford to continue purchasing four injections every time Mom receives one. She agrees. She searches her suppliers’ websites for an alternative that will work; she double checks against the prescription details; she finds one that has preservative and will last. It’s about 20% more expensive on the surface, but still cheaper than the alternative. It comes in a 2mL bottle. Mom’s injection requires 0.4mL. It should be good for five injections. Good. She orders it. I inquire about pick up and she and I make yet another arrangement for delivery to Mom and Dad’s door, following a phone call to let my parents know they’ll need $33.18 on hand to give to the delivery person.
All the while Mom’s gazing around the seating area between the pharmacy and the walk-in clinic, exclaiming every so often that Dr. B said he’d give her the injections right in his office; every Wednesday he said; she had an appointment for 5:00. The pharmacist smiles and nods. I ask her to put my name and contact information on Mom’s file. She smiles and glances at Mom, agreeing that it’s probably a good idea. Mom and I go back to their house where we pull out a calendar and write down “Tuesday April 7th medicine deliver $33.18” and we write a note on every Wednesday of this month: “Needle 4:30 clinic on 8th”.
In the end everything worked out. As it stands right this moment (April 13th) Mom and I have been to the clinic on 8th twice – all good. The medicine was supposed to be delivered right to Mom and Dad’s door but Dad, being a tad paranoid, called down to say he’d be by to pick it up just to make sure there was time to fix anything should the system go awry (Phshaw! What could go wrong??). The great news is that the $33.18 paid for ten shots; I checked with the nurse and the medicine with preservative should last; there will be no trouble. This is what I am told and, finally, I am ready to almost believe this. I think. I think we have all the wrinkles ironed out.
Why on earth can’t the systems talk to one another? Why didn’t Dr. B know that homecare didn’t deal with that medication or had changed their policies on service? How come the stickynote from Dr. B to his receptionist was delivered to me via the switchboard operator? Why can’t people working in the medical profession understand how to communicate clearly to senior citizens? Shouldn’t there be simpler systems in place for making arrangements for an injection? Why can’t the medications needed be available where they’re being administered? Doesn’t it make sense to have patients, especially since ‘patients’ are the some of the most vulnerable people in our communities, receive care from one place, one group of people who all know each other? Wouldn’t this develop a little more trust and security during a stressful and confusing time? Does the pharmacist even suspect that when she tells my mother that they ‘make the arrangements here’ my mother thinks she means that they literally organize appointments for clients??
I do not know how I’m going to survive the health care system when I am old. I have no daughter to navigate its currents and mazes for me when I’m too old and tired and addled and sick to do it for myself. I’m beginning to think a great plan might be to just settle into a hospital corridor and take up residence there as a squatter. They can do with me what they will. The arrangements will be much more convenient that way.