PrologueIn a conversation while standing in the parking lot of a nursing home several years back and more recently, when she was first considering putting Aunt E into a nursing home, my mother looked me square in the eyes and said, “If something ever happens to me and I have too many medical needs, you guys do not hesitate to put me in a nursing home and let the professionals take care of me. Just come and see me every once and while and check in on me...
A year of no contact with Nmom has passed… During this period, I completed my comprehensive exams and am in the ABD (all but dissertation) phase of my PhD program. And I write… papers and proposals and the dissertation… in iterations. I am enjoying my two daughters, 11 and 1, and my husband/friend of 14 years. With hubby as stay-at-home Dad and myself only teaching part-time, we are poor but we are happy. And hopefully, we will not be poor for long. At a point during this year of low contact (quarterly telephone check-ins) with my NMom, I hear through various grapevines, (i.e., Younger Brother-[YB], Younger Sister-[NSis], Older Brother [OB], and Dad), that everyone is at a heightened level of stress, on standby status while (currently hospitalized) NMom is experiencing acute bouts of anxiety, refusing to leave the hospital until she gets firm answers regarding her health condition. Fearing her impending death, her anxiety won’t let her resolve to go home; she (a nurse, herself of 30 years) proffers various scenarios for her current symptoms including a possible malignancy in her abdomen, liver problems, perhaps a kidney infection. However, anticipating her discharge from hospital, subsequently rehab, and potentially the nursing home for 24 hour care, the siblings and Dad hold a family meeting about how best to manage her day-to-day care. And for the first time in a year, I feel a tension, a pressure, a force tugging on me, pulling me into her field of gravity. The gravitas of the NMother dying… …and the oldest, daughter (also a nurse) nowhere to be found. For me, questions surround this phenomenon from both outside and within. I cannot confirm this, but I believe that when physicians, nurses, nurse’s aides, family members and visitors from the church ask her about me, Nmom, implies that my life is consumed by my family and my schooling and that it is difficult for me to find time to visit/care for her. To my siblings, it seems as if she puts me on a pedestal, idealizing the pursuit of the doctorate degree (one of which she also has), and being married and in a traditional nuclear family setup. Each of the siblings have personal struggles with their children’s other parent AND/OR their respective significant others. I believe this is largely NMom’s doing as she has never accepted a potential spouse into her fold. My husband knows with whom he is dealing and loves me despite my NMom and how she treats him, though it has not been easy. My siblings, particularly, my Nsister, has some resentment for the way NMom places me on a pedestal, particularly now that I am aspiring to the higher degree. She has no idea, though, that Mom never brags about me to me; that if it weren’t for my siblings resenting me, I wouldn’t know that my mom even thought anything of what I was doing. I cannot get too caught up in what others may be thinking of me. That drives me crazy with guilt and shame. I do think about what I am thinking of me. Internally, I am imagining the conditions surrounding NMom’s death and I am struggling. In my fantasy of her death scenario I wonder... Will I be attentive? Will I want answers? Will I understand that I probably won’t get them? Will she expect round-the-clock care from me? Will she let up on me? Will the family hate me if I fall short of NMom’s expectations? As these thoughts invade, my anxieties step into overdrive, my belly flip-flops and I note the increase in my irritability. Welcome back to NMom’s stratosphere…
My first instinct is to call the therapist that helped me think through things a year earlier, when I was at my wit’s end. Six sessions of thinking through my priorities and life goals. Six sessions during which I see an improvement in most, if not all of my anxiety/panic symptoms. But somehow, before I can sign up for another six sessions, I get a call from [Hometown] and NMom’s gravity pulls me in closer...
“Why won’t they explore those 6,000 cc of fluid I passed when they catheterized me?!” NMom is upset because though she took no diuretic, she mysteriously passed 6 L of urine when she was in the E.R. after a bout of abdominal discomfort.
“I had a young nurse in here yesterday and [Older Brother] was telling him that I was a Nurse Practitioner and she was telling him that that is what she wanted to go to eventually go back to school for, so I gave her an assignment to go look up the word “ascites” on her computer when she got home from work and let me know what she found when she came back in today. She printed out the symptoms and I gave this printout along with a list of my other symptoms to Dr. Majeeb this morning. So he’s getting a scan of my stomach later today. The Dr. didn’t read the info she gave me but I had [her ex-husband, my Dad] sit down and write a letter for me. And I didn’t show it to anybody else and he’s acting upon that. And I’m going to be discharged this evening after the scan.”
Me: “They are going to discharge you?”
NMom: “That’s the plan. I’ll come back to see Dr. Majeeb in a week. But I am still a little weak. [Younger Brother] just called to check on me and [Older Brother] is going down to get us something to eat. Your daddy is over there in the chair sleeping. I was just here reading the information the nurse gave me and I was reading all of the symptoms of ascites. I think that fluid is ascites. ‘They’ were talking about maybe it’s liver damage from all the medicines I’ve been taking. Could be damage to my kidney. And my blood sugar won’t go down, the lowest is 290. I drink a little bit. He just gave me a forkful of eggs and a piece of beef sausage patty and I’m full. And Dave has been eating the food from my tray for me…”
Me: “Aren’t they keeping up with what you eat?”
NMom: “They should be…This young nurse is real concerned and she is working on my behalf. The doctor ordered two more tests before I’m discharged. This is good, right. I’m going to read about all the symptoms I had.
-Weight gain of 24-32 kilos in four days
-Pain in sternum on left side and/or back at night
-Swelling of legs, abdomen
-Wheezing
-Increased shortness breath
-Irregular heartbeat with pounding
-Urinated 7 Liters of clear, whitish fluid
The nurses are focused on my blood pressure. When I urinated, my blood pressure lowered and my stomach got softer without any emergency treatment. I am sending the doctor information for consideration and further testing before leaving today. And I sent him online information on ascites. He didn’t look at that information too much but he knew… and he paid attention to my letter. And he said, it may be my heart…So that’s where I am now.”
Me: “Have you seen your nurse?”
“She came in this morning. She was thinking it might be liver damage with all this medicine. So the test will be a scan looking for fluid in the abdomen and checking my heart to see if it’s weak and something’s going on.That’ll be good enough for me.”
[OB] comes in the hospital room to tell our Dad, “You should go down to the cafeteria. They have grits. Go ahead and eat Dad, you need to keep your strength up. You’re almost 68!”
Mom interjects: “I’m so weak and wobbly.” To me, “You know I was in isolation don’t you? Go ahead downstairs and eat Dave! [OB] wanted to know if you knew. The tests came back and they took me out of isolation. [NSis] came down here to give me a bath yesterday. So many people were here, she didn’t give it to me but I managed.”
[OB] mumbles something I cannot hear, but NMom does. She chuckles. “[OB] you didn’t have to say that. Then to me she says, “I feel weak , but I feel better. This morning I had a 1000 cc’s out and I don’t feel my bladder, it can’t tell me I’m full.”
[OB]: “It can’t?”
Mom: “No, it can’t.”
[OB]: “Mom, I got to go to work…”
Mom to me: “Well, how are you doing?”
[OB]: “Mom, I got to go to work…”
Mom: “Huh, well we need to pay the quarterly taxes. I’ll pay that when I get home (from the hospital). Will the girl be there when I get home? To [OB]: How much money do you owe her? I thought you paid her Friday and gave her $10 extra. Well then that’s a red flag isn’t it. Don’t call her back. She’s desperate. She came on to [OB]. You gave her money $100 on F. So she’s already in your pocket! So call her up and tell her we’ll call her. And find me somebody. I’m not going to lay in that house, even over the weekend without having a female. I want Pioneer and I want her to get paid like a nurse’s aide. Okay, [Tiff],. I don’t need to hold you up…”
Me: “So what’s your next move?”
Mom: “I’m going to go home and regroup and take a sabbatical and get somebody who can help me get on my feet and get to these doctor’s appointments and stay at home and decide what I want to eat and don’t worry about going out to do this and going out to do that. When I was sick I was confused and couldn’t focus. This oxygen, cirrhosis, pancreatic ascites, they can’t deal…”
[OB] speaks up suddenly talking about work issues. You’ve got a call from [receptionist] saying that someone can’t go to work or something.
Mom: I just want to go home and get in the bed, (more weakly than before)
[OB]: So, don’t worry about that, alright?
Mom: Yeah, so I had that fluid so I couldn’t urinate right, I just couldn’t get that fluid off me. The liver may be… weight gain, swollen ankles. Umm-hmm yep, I had all those symptoms. A couple of times I got cramps in my leg. And I asked about the potassium and they gave it to me for the first time yesterday.
Me: “Well the blood tests they ordered will tell you what you want to know about the fluid balance. When do they say the tests will be back?
Mom: The nurse says I won’t be discharged until the tests are done. So discharge is on hold right now. I’m OK
I begin to tell her that I will check on her later when she offers: “Oh, I knew you were busy. Wow! Wow! Wow! I’m just hoping and praying for you. Don’t feel obligated to be here with me… This is very important to me. For you and family to move on and reach your dream. I’m so proud that you stuck with something in spite of…I tell you you’ve got a dream. You’ve just got to go for it one piece at a time. You’ve just got to work for it. It was a good feeling when I got my degree in both places but in the back of my mind I always wanted my Bachelors and my Doctorate degrees in nursing. It seemed impossible. For a lot of people that seemed smarter than you were, it comes easy to them. But there is something wrong with their brain. It takes a special kind of person to be an entrepreneur. There’s something special about them. People say how did YOU make this business work? And the entrepreneur says, I don’t know! I just work hard . It’s something special, they just strive and push their way.
When I got my doctorate, professionals came to eat dinner with us and they asked if we had questions and I asked how do you deal with people who haven’t sacrificed like you have (to earn a doctorate a ministry)? And he said when you both sit on the pulpit the way you carry yourself everyone is going to know it and you’ll be so proud of what you’ve been through so you won’t be cocky and it won’t be because of your strength but because of what God took you through. I don’t have much to give you, but I can encourage you with these words. But the Lord is going to let you have it earlier (in life) because you know m-more. You’re supposed to let ‘em fly. Let ‘em go. Let ‘em do everything that they think they can do. And that’s what you are doing? I don’t care if things aren’t going right. I don’t want you to stop pursuing your degree. We can communicate and pray and let God take us through. Even Jeremiah… When you feeling like you can’t share no more and you don’t know what to do but you… I know you’ve got this nervous condition. This type A personality. You get things to go your way. You’ve got that stomach condition and it works on your nerves. But I pray that you hold on. And you will. And you will. (The words seem encouraging; however, I cannot help but hear disappointment in her voice). I keep thinking about that computer I want to get you. I just… kinda… It’s moments like this. I think I should do something special for you.
Me: No, you don’t have to do anything for me. If anything I owe you for helping me out with some money to pay a bill recently. I appreciate what you have done for me and my family
Her: No, you are spiritual enough to know that it is the ENEMY [Satan], not the person that is trying to get you. And you know that God wants you to forgive and for you to keep on going and to trust and rely on God and realize it’s not the person, but the ENEMY that’s against you.
I had that brain. And God let me know that that was a camouflage and God showed me that that was a healing. And she goes on about her miracle healing taking place in the lungs. And then she began to reconcile how the doctor looked at the lungs but decided that he needed to order to tests for my heart and abdomen. SO I believe it’s in God’s plan. It’s kinda hard getting around to what you need. But he’s supplying your needs SO we are supposed to keep going around. The Lord loves you and he’s with you. Your Holy Ghost is still there. And if you are not doing what you are looking to do, He has you going where He want’s you to be. Look who he took, Jesus, but at 33 he began to minister. He was an ordinary person moving around, nothing spectacular, just a good boy a good man, getting ready to mature. But all the time God was talking to him. Getting him ready. That’s what God is doing for you. He’s getting you ready. You still gotta go through your problems. And the way you handle it puts a smile on his face. Your acting like your heart is. You have a good heart. The more you do that. The more he will fight your battle. You’re a good girl. You’ve always had a good heart. You have a tender heart too. You’ve gotta protect yourself. If I could help…
Me: I appreciate the words. I’m trying to keep it together
Mom: It will be the happiest moment for me. For you to walk in and show me that degree. Don’t worry about me. You have a supportive family and I think he gave me more care, more attention with the rest of the family. And [Dad] has been sticking with me. And I’ve got you working hard over there and if you need money for tuition. Just make your way down here and I can always squeeze something out.
Two weeks later (August,
, another hospitalization I don’t go to visit her because I am taking comps, and afterwards am sharing a vehicle with my husband, a vehicle that minutes before indicated to him a check engine light.
On this hospitalization, she has 4 CT scans. Then, I go back on no contact for four months. By December of that year (2011) I find myself having a family meeting with the entire family including all siblings and Dad:
Dad: She does not want the nursing home! She wants to stay in the house and have the family and caregivers provide 24-hour round-the-clock care. She speaks of being at odds with herself about wanting us to have our independence, her having hers, and feeling like a burden or a worry to us.
In the family business, she doesn’t want to deal with the day-to-day problems being brought to her and having to worry about her employees and childrens’ income issues.
When someone is with her in her house, which helps in her anxiety about being alone, she complains about the lack of quality time spent with the person. Perhaps they don’t engage with her enough. Or they spend too much time talking about their own lives. She is also feeling some pride about exposing herself to the men. And she cannot afford a home aide full time.
So from this dilemma, Plan B was hatched by [OB]: ‘The Aunt E Plan’ of long-term health care with some considerations: [OB] will arrive for early morning setup on most days. Let Aunt E’s Medicaid caregiver cover the daytime hours for the both of them and bring E’s retirement income into Mom’s house, splitting it between [NSis’s daughter], and the expenses for the house in which NSis lives.
[OB]: The house would need to be re-arranged. [The current housekeeper/cook]-needs to be let go. She has a problem coming in close contact with Mom’s bodily fluids or her medical equipment and supplies. And Mom only eats sandwiches, so she doesn’t need a cook…
We could get a personal care aide to do the catheter care and to change the dressings and to do the stuff that would burn out the family members.
I hear myself say: “I may be able to come four to six hours each week to provide some respite to her usual caregiver.” I hear myself say this despite my very low income, my car being on its last legs, and myself being in a final, intense push to graduate in May. I add: “I’ll check her vitals, do some catheter care, and other nursing stuff and stress/mental health support. Mom said something about paying her personal bills but I suppose [OB] would handle that.”
The elephant in the room is NSis considered a lost cause. [OB] thinks she should stay at where she is and let her figure out childcare when she has to go to take care of Mom. [NSis’s daughter] was also being incentivized to cover a few hours with Mom with a few dollars a week.
It is also decided (by NMom and [OB]) that [YB] move in with NMom to help monitor her and keep her company. [OB] will teach [YB] his daily process with Mom and the importance of spending the time with her and doing things that are needed quickly. But importantly, sitting with her for a little while will make the quality of the time with NMom better and should be done before running off to do other things.
I mention to [OB] to let our mother know that [YB] needs his "[YB]-time" and that sometimes he needs to get in the van and get out.