Private: Do Not Enter

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The graduate school I attend is ready to kick me out. In all the fuss and commotion of getting moved to Kansas City and dealing with my former house, I apparently didn’t communicate well enough with one of my professors. I assumed my professors would give me incompletes based on my situation and allow me to finish my work, most likely after grandpa passes away. Unfortunately, I was wrong. One of my professors gave me “Unsatisfactory” ratings for her classes, so I was immediately placed on review by the Dean. They said I have two options: I can hopefully retake the classes with my advisor’s permission (not likely since he and I have butted heads more than once), or I can apply for a late medical withdrawal which would require me to get documentation from my grandpa’s doctor and the HomeBase service that he receives his end-of-life care with. I told them I didn’t mind attempting to get the documentation, but that they would have to give me some time because I have to have grandpa’s permission to talk to his doctor since he still maintain his own durable medical power of attorney. The Vice President of Student Affairs said that would be fine, and hopefully I could just get the “hospice people to write some documentation for me.”

I had two copies of important phone numbers. I had grandma place one at the desk where all of the house phone calls go to, and the other copy I had filed with all of grandpa’s medical papers in his office in a manila folder for any time I needed to go to the VA. The other day, I was attempting to find the list of phone number. I searched the desk.

“Grandma, do you know where the phone numbers list for grandpa’s medical is?”

She didn’t answer. I assumed she was ignoring me. I went to grandpa’s office and looked on his bookcase top shelf where I had placed the documentation file. It wasn’t there. Since my aunt was visiting and had helped me put the file away in grandpa’s office, I asked her to see if she could help me find it. She followed me into the office. We couldn’t locate it. Grandma came rushing in after us and got in my aunt’s face.

“Why do you do this? What are you looking for? You’re so snoopy. Do you want me to come over to your house and go through your things?”

I had put grandpa on the portable commode to use the bathroom. I went to check on him. As I was helping him get cleaned up, I heard grandma start screaming. My aunt’s voice followed soon after. Then, a door slammed. I soon heard my aunt’s car start and she sped off.

Grandma came into grandpa’s bedroom holding both hands on her temple.

“Oh Lee, I’ve really done it this time, but I’m just so tired of her coming over her and going through our things. I just feel like my privacy has been invaded.” She was bawling.

She walked out of the room. I told grandpa I was very sorry for upsetting her- that it was my fault. He seems confused as I’m sure he didn’t understand what had happened since he couldn’t hear the screaming.

I had already called in dinner, so I told grandpa I was going to go pick it up. I was tearing up, because grandma was so mad, and I had never disappointed her so badly. I was mad though, because I also felt disappointed that she would overreact so badly to such a small infraction. Here I was, having moved across the state to help take care of grandpa so he could have his dying wish, and now I was getting kicked out of graduate school for this sacrifice I made. I made the choice to help, because I had been asked. I made the choice to help because I believed in this- the idea that families should take care of their loved ones, and that Americans must do better to provide their loved ones with in-home geriatric care. Who can afford nursing homes? Who wants their loved ones to sit and rot until their final breath in a place like that. I don’t believe in the corporatization of geriatric care that is bankrupting American families. Yet, her my grandmother was, worried about me trying to find a medical document in grandpa’s office. I had given up every ounce of privacy to move here and live in their basement, and this is the biggest issue that’s splitting my family apart? It seemed incomprehensible. I called my mother and cried to her. I just needed to vent.

“I’ve never seen her that way, mom.”

“I know, hun. Everything will be alright.”

Sometimes we just need to hear our mother’s voice. Sometimes we just need to be reminded of our connection to humanity to bring us back to earth.

After dropping dinner off, I went to go check on my aunt. I was sure she was very upset.

Give Up

Yesterday was the first day I have felt frustrated with this situation, and I was disappointed in my grandmother. My aunt and I have been trying to get my grandfather enrolled in a special program that is only offered in three towns in Kansas (Leavenworth,  Lawrence, and Topeka) through the VA. Although grandma wanted to use hospice services and they’ve been available, my aunt and I thought it would be better to utilize the program through the VA because it has a lot more services available than hospice and it’s a really wonderful program. Grandma didn’t want anything to do with it, so she told my aunt and I we would have to deal with it if we wanted grandpa enrolled in it. There was only one catch: in order for grandpa to receive the services we had to bring him to the VA. Grandpa hasn’t been anywhere in the last three months except the hospital when he was transferred to St. Luke’s on Barry Road in Kansas City when his infection was the worst. The reason for that is because he’s virtually completely immobile. He has no strength to be able to move, and even getting into a wheelchair requires intense efforts and help. My aunt and I knew though if we could just get through the appointment and get him qualified for the services, it would be worth it- not necessarily for grandpa but to help me out since grandpa hasn’t been receptive to letting anyone else watch over him if I need to leave, and since he is still technically of sound mind we aren’t able to override him in any medical decisions. I foresee that changing very soon though because I do believe he is losing his grasp, emotionally and mentally.
Yesterday was grandpa’s appointment to set up the services. When I woke up with him, I had every sense of feeling that it was going to be a difficult day. The first thing grandpa said when he awoke at 6 am was “Mike, I don’t think I’m going to be able to go today.” It worried me. I had already chartered a handicapped van to pick he and I up to take him and I had already called the VA to confirm all paperwork was complete and that there wouldn’t be any roadblocks when we arrived. I had no idea how easily the VA could put up roadblocks, even if all the paperwork was flawless. After grandpa was awake, we went through his normal routine: a quick sponge bath, I changed his clothes, gave him some water to drink, combed his hair, transferred him to his wheelchair, fed him breakfast, got him to urinate and perform a bowel movement, got him cleaned up and then transferred back in bed. All of it is rather exhausting, mostly because he insists on going through rituals, and cutting corners to save effort or time isn’t an option. He sleeps usually for about 30 minute increments.  He may awake to clear phlegm out of his throat and to sip some water or to urinate, but usually returns to sleep after asking for water or tissues.
Grandma was feeling sick also and was not able to make lunch or breakfast as she usually does. She laid asleep on the couch as I waited for grandpa to wake because I knew he would need to use the bathroom again. Grandma woke up around 11 am and asked me why I had not started making lunch. I told her that because we were on a tight schedule and because grandpa would likely awaken soon and need to use the bathroom I had asked my aunt if she would pick up lunch and bring it over so I could be available for grandpa. Grandma got instantly upset “You didn’t tell me you were going to do that!” She went over to the desk and got $30 out of an envelope and came over and threw it at me. I told her I didn’t need it and since I had decided to have lunch brought in that I would pay for it. She stayed upset until she left for her Bridge tournament about an hour later. My aunt arrived with food and grandpa awakened all at the same time. I was really waiting for my grandmother to leave in order to start getting things ready for our trip to the hospital. Any kind of perceived movement to prepare for anything would rouse suspicion in grandma if she was there and she would likely be asking a lot of questions and getting stressed for no reason.
Grandma finally left and my aunt and I hurried to get grandpa ready. My grandmother didn’t know we needed to take all of grandpa’s prescriptions and pills with us and we didn’t want to tell her because she’d get upset about it (she tends to get upset about things that don’t really matter). Cherie put all of grandpa’s meds in a ziploc bag and I gathered his military papers, birth certificate and wallet. We got his coat on after he ate, and then we wheeled him outside to wait for the coach to pick him up. His first appointment was at 1 pm and his second at 2 pm. We assumed he would be done by 3 pm so we scheduled the coach to come back at 3pm, which was the latest they could come back. I asked Aunt Cherie on the way out if we should bring a car though in case his appointment runs late. She said she was thinking the same thing. Nothing would be more stressful than being stuck at the VA with a 90 year-old man in a wheelchair. Every part of getting grandpa to the VA was either stressful or painful for him. Riding in the coach really bothered him and hurt him, and of course the stress of going from the house to a van to a building caused a lot of stress.

As soon as we arrived at the VA hospital, a nurse unloaded him and whisked him away. I followed quickly, asking where she was going. She, in turn, asked me where his first appointment was. I told her he had lab work that needed to be run. She pushed him straight to the elevators and turned him over to me.

“You’ll be going to the fourth floor. You’ll walk down the corridor and take the first right. The lab is the first room on the right.”

I followed her orders and we arrived at the lab shortly after. As I approached the window, I asked if Roxanne was available. I had spoken with her earlier in the week and she had told me to ask for her when we arrived because we didn’t have identification for my grandfather and she was going to process him through anyway.

“Roxanne, that’s me. What can I help you with, honey?”

“I spoke with you on the phone about my grandfather’s particular situation. He’s 90 and we don’t have any state-issued IDs for him. You said to ask for you and you’d still process him as long as he knew his Social Security number.”

“Oh yes! I remember you. Okay, let me see here. What’s his social?”

My grandfather rambled it off and she pulled up his file on her screen.

“Okay, here we go. Lee Fly Smith. Date of birth is September 29th, 1926?”

“Uh, no. It’s 1925.” I exclaimed.

“Wait. So his birthday isn’t 1926?” she asked.

“No, it’s 1925.”

“I’m so sorry honey, but you’re going to have to go down to enrollment and get that changed. We won’t be able to process him if his information is incorrect.”

Only a Mother Could Love

I sit up,  worried about Grandpa as he coughs terribly, weezing for breath. Grandma checks in on him periodically and I wonder if I should move a chair into his room and sit by his bedside in case he has any immediate needs. I worry he doesn’t have much longer. Of course we thought he didn’t have more than a month back in February. We didn’t think he’d make it out of the hospital. But now I just worry that he’s losing steam. He’s tired. He’s ready to be done with all the pain and all the effort just to do very minimal tasks. He rarely smiles, except when he looks at Grandma,  and it makes me hope that I get to experience a love like their’s.  When I changed Grandpa today into his pajamas I saw the scar he had. A long scar on his stomach. I looked over his skin- it seemed so delicate that even a paper cut would tear it open like wet tissue. I think about his final days and what it must be like to know any day could be your last, but to be in the same state of mind as he was when he was healthy. He grapples with understanding that he cannot walk. He doesn’t seem to know that he will not get better. He talks about fixing things and doing things that everyone knows he cannot and will not do. We play along because it wouldn’t be nice to deny him the thought that he could do those things. Can he not at least think he can walk? Believe he can go about his daily life as normal? Perhaps that’s when the end invades, when our reality in mind and reality in body separate like twins that have always grown together but are ripped apart suddenly. One longs for the other and the absence of one creates confusion in the other. I worry for my grandfather. I worry. I worry because I know he is a rock to the entire family. But most of all he is a rock to his wife and children. Grandma will not last long when Grandpa goes. She cannot function without someone to take care of. It is her passion to please my grandfather, and everyday I become more aware of the signs that despite her good mobility she too is impermanent. The last few days she hasn’t brushed her hair or paid attention to her clothes as she usually does and it made her seem much older than in previous days. It made me think of when she is in grandpa’s position who will take care of her. Her sons don’t care for her. Her grandchildren don’t care for her. Perhaps it will be me and I think I would be okay with it. Someone must look after our aged loved ones whether or not they are as loved as others. Grandma certainly isn’t well loved by most in the family, but no one can ever say they had to guess where they stood with her. I admire that greatly in her. I worry though. These two wonderful people have lived such vastly different lives and the end of their lives is riddled with such vastly different experiences in quality and mobility. Grandma has always been a woman only a mother could love.
I lay awake, worried. Wondering what must go through Grandpa’s mind. Wondering how well he can sleep with all the pain. Like a mother, I can’t sleep because I want him to be ok, yet some part of me knows the doctors visits and attention he gets are really futile and only to manage his discomfort. Whatever the case, I do hope when Grandpa finally goes he is not experiencing all of the pain he is in today. I hope that whatever governs this universe will give him some relief from the months of pain he’s already endured.
I’m struggling with school. It’s so odd that during my Baccalaureate experience I was able to handle so much and my graduate experience is riddled with trials. I wouldn’t trade it for the world because I know these times with my grandfather are precious. When my parents divorced when I was a child, my father was always loathe to allow us to visit our grandfather. We didn’t see him nearly as much as we had hoped. Today I was looking for Grandpa’s birth certificate and came upon a file with my parents names on it. It mostly related to my father. Despite how terribly my father treated my mother’s dad, my grandpa still loaned him substantial amounts of money to help him during the divorce so he wouldn’t lose everything. A few years later when my father filed bankruptcy, my grandfather was listed as a creditor in his bankruptcy proceedings. I never knew any of that, but it makes me admire my grandpa even more. The fact that a man would do what was really best for his daughter and grandkids, even if that meant helping out his daughters ex husband, really shows the integrity by which grandpa ran his life. Though I do believe this time with grandpa won’t last long, I hope my school will work with me to accommodate my situation and allow me the time I need to care for grandpa. The more I find out about grandpa’s the more it presses upon my heart that I must continue to give every bit of attention I can to caring for him. I wish there was more I could do, but for now, I will settle for watching the birds out the window with grandpa and enjoying the fact that he appreciates them so much. Being that my mother’s family is Bird Clan, it is somewhat serendipitous to spend his last days watching the birds.

The Beginning of the End

Life is funny in that it is constantly making us hope for more years while simultaneously devouring the years we give it. How do we get to the end of life so unprepared when we spend our whole life preparing for everything?  My poor grandfather, a man of many honors, courageous enough to save a shipmate in World War II in the Pacific, but scared in his end years to save himself from the grips of frailty caused by his overwhelming pride, he  was always a quiet man. Three months ago he went into the hospital. Just this week, he came home. Now, it’s my job to look after him along with my 86 year-old grandmother. What I find in doing so is a poignant reminder of the inability of technology to spare us from the grips of our own geriatric bodies, slowing pulling us one step at a time into our final day. Grandpa spent two months in a therapy center after nearly a month in and out of the hospital. When I first learned of his situation, I was a lonely Master’s student, unemployed and living on unemployment payments and a settlement from my previous job. I came to visit my grandparents with my mother and her husband. It took one car ride to change the course of my life.
“I’m going to the grocery store. I think you should come.” Grandma said to me.
Dottie, as everyone calls her, is a spunky woman who doesn’t take no for an answer. Though she is only a few years from 90, she is completely mobile and healthy, within reason, at a spry 90 pounds. We descended the stairs into the basement and stepped into the garage to slip into her enormous Cadillac.

“I hope you don’t mind coming. I thought maybe you could help me pick out some things for dinner for everybody.” she said.

“Sure grandma. I don’t mind at all.”

We got into the car and she didn’t start it.

“Mike, I don’t know what we are going to do.” she said as she covered her face with her hands.

“What’s the matter, grandma?”

“We need help! Grandpa can’t do it anymore. And I can’t take care of this house. We need a male to help us. He’s goong to die, Mike! I’m so afraid your grandpa is going to fall and I can’t help him anymore. Cherie can’t help him. We need a strong man who can help in case anything happens. I know he doesn’t have much longer.” she lamented.

“You don’t think Cherie would come help?” I asked.

“I’ve already talked to her and she hasn’t said anything. But we really need a male. Cherie couldn’t help your grandpa if he fell.”

“Well let’s talk about it with Mom and see what we can figure out. Maybe there are some home health aids or someone who can help. Doesn’t the VA have a program or something that can help grandpa?” I asked.

“I don’t know! I’m so tired of doctors and hospitals and all of it. I just don’t want your grandpa to go into a nursing home. I’m not ready for that and he doesn’t want it. He wants to be at home. Who knows, he may not come home in the condition he’s in. He’s giong to need hospice.”

“Well, we will see what we can figure out. Surely something can be done.”

My mind was racing though.  Was grandma informally asking me to come help them? What did she expect from me? I had never really been very close with my grandparents but I had many fond memories of times spent with them as a child. I missed them a lot, but since I came out of the closet I was afraid to be around them. I knew how conservative they were. My mother had told me of conversations she had with grandma about it, but grandma and grandpa had never directly approached me about it. I’m glad they didn’t because I wouldn’t know what to say or want to think that anyone else in my family thought less of me because of me being gay.

After we shopped, I talked to my mother and told her what grandma had said. I felt like grandma was pleading for me to help. I had to. It was my obligation.

Four years ago, I won the largest speech contest in Kansas, the Shocker Speakout at my college. The subject of my speech was my other grandma,  Grandma Craig as we called her. She was my step mother’s mom, but she treated us kids as her own and we loved her dearly. When I was in high school I worked at her nursing home as an Activities Director and I loved it. But, much like in any family, money got involved in her end of life decisions and my stepmother had her declared incompetent to handle her affairs and took over control of grandma’s assets and property. She didn’t waste time in putting her into a terrible facility far enough away from anyone that she had no visitors. When Grandma Craig died, my stepmother didn’t tell me. Even though I had know her for 16 years and spent more time with her than most of my family. I didn’t get to go to her funeral. And I missed her graveside service by one hour. I can’t imagine how disappointed she would have been that I wasn’t there.

I miss her terribly. And I can’t let what happened to her, happen to my grandfather. My mother’s family has the resources to keep his end of life care comfortable and respectful of his wish to be at home. And I can help facilitate that. And I must.

As I write this,  I am fighting sleep,  sitting in one of my grandmother’s pink wingback chairs in the next room over from grandpa. Grandpa hasn’t had a bowel movement in days, so we had to give him a laxative. Since he can’t walk, I have to be ready when he awakens to get him on the portable toilet or I’ll be cleaning up quite the mess in the morning. Just before I went to bed, grandma asked me how much I would like to be paid weekly and I hesitated. Was I asking too much? At times like this, you can’t put a price on being in the comfort of your own home. I need to be able to sleep well at night knowing my bills are paid, and that means grandpa can sleep good at night in his own bed, surrounded by family. Our society needs to come to terms with the fact that we have an increasingly aged population. We must not continue to dissolve our families into nothingness. We must step up to the plate and take care of our own. Our world can’t be filled with Grandma Craigs. We must let our family die with dignity and peace and surrounded by those they care about and who care about them.

We didn’t think he’d live much longer because he looked so terrible in the hospital. But thankfully, today, he seems much healthier, or at least as healthy as a 90 year-old can be, despite being wheelchair-bound and unable to complete most daily tasks without help.
I get up with him at 6:30am. And I am with him through most of the day unless grandma sends me on an errand. He goes to bed at 9 pm and by that time I am exhausted. I sleep with a baby monitor at night so if he calls I wake up and tend to him. I guess now I know what my mother felt like for 35 years of her life as her 6 kids, spread out over 17 years, slept in the next room. It’s a state of mind only a parent knows, the half conscious sleeping one does,  slipping into dreams but leaving your ears turned on and your senses kean. It doesn’t allow for any sense of rest. But any sleep, even half sleep, is better than none.

So this is the beginning of the end for a lot of things, and in that sense it’s bittersweet. But it is an honor that my family has enough confidence in me to allow me the opportunity to take care of grandpa. Grandpa has had a full life. He’s been all over the world. Been at war. Been rich and poor. And he deserves to have the opportunity to be in the comfort of his own home if he chooses, because I know in my final days, I would hope whatever family I have respects my wishes. I would hope my family thinks my comfort and dignity is important. I would hope someone was willing to help if I needed help. I know grandpa would do it for anyone in the family he could. And he has never hesitated to help any family he can. It’s time we all took a lesson from his book and helped our family in need.