The time from when my Mom was diagnosed with a brain tumor, to when she died, was about nine months. It felt like a lot longer. There was so much compressed in such a short time.
For the first few months, only a few of us actually listened to what the doctors were saying about the prognosis. I can’t help but research and allow my brain to go through infinite scenarios, each one worse than the previous. I wasn’t in a panic, but I was determined that whatever was needed to be done to make sure Mom was comfortable, I was going to do my best to help.
I was in this mode of wanting them to focus only on themselves. We needed to renovate the bathroom and put in a wheelchair ramp before she came home after the surgery. At the time, I was the only one that could pay for anything, so my wife and I decided that we’ll just pay. We borrowed, charged, did whatever we needed to, so we could make sure the work was done.
This is the kind of thing Mom would’ve done. I wasn’t looking too far in the future to worry about it, as my wife had a really good programming job, making almost twice what I was making. If we piled up some debt, we could always pay it off later, we reasoned. My wife had lost her father to cancer before we met, and she told me that a thing she learned from it was that when you’re approaching a decision, it’s up to you if it’s that important to do, just do it. That way, you can move on with no regrets.
Mom came home. Since she was terminal, all of the visits with the doctors, the Visiting Nurses, everything were covered. The support system was huge for us. I was still worried about Dad, as he had lived his whole life being taken care of by either his Mother or my Mom. He never paid bills, cooked all the meals, did all of the laundry.
To his credit, he did a wonderful job picking things up. It was cool to see him take charge of things. I’m still proud of him for this, but in retrospect I think we underestimated the motivation of him finally being the one to be the caregiver, compared to him really changing and evolving.
My siblings were here to help out with the house, and came to visit and help Dad out. It was hard for me to be down so much, as I was an hour away with a daughter that was losing her Grandmother that she loved immensely. They weren’t as willing to make decisions. My middle brother was in denial that she was terminal. My sister was just trying to keep it together, my oldest brother came around to help, and my second oldest was far off, and really couldn’t come help. So, it just evolved that Dad leaned on me to talk to the doctors, to help arrange things, to tell him things will be all right.
Mom had chemotherapy and radiation treatments, in an attempt to slow the growth of the tumor. She was still ambulatory and talkative, and Mom for a good part of the summer. However, as the summer started to wind down, the treatments and the cancer were wearing her down.
Early fall, she suddenly had a seizure, and I found her in the emergency room alone, with blood on her nightgown where she had bitten her tongue. I saw her lying there, and my eyes filled with tears. I quickly pushed them back, and went to her and whispered to her that I was there, I loved her, and I’ll be with her always. I said I’d take care of things.
After that seizure, she couldn’t talk very much, and she couldn’t walk anymore. She had to spend time in rehab before even being considered to come home. She had progressed to requiring a feeding tube due to the seizure. Dad and my middle brother got into a fight, because it was then Dad finally accepted the fact that she was going to die, and he wanted to make it as comfortable for her as possible.
The time that Mom was in the nursing home again to recover, the siblings talked about it and decided to renovate the living room and kitchen for her, so that she could be somewhere loving and comfortable. My objective was to make this happen, even though my wife had lost her job, and we were in the middle of getting her severance payments. We were both still unified in this, as we still just charged and borrowed what we needed to do, as it looked like she had a good number of opportunities to bounce back with. Yes, my brother was in denial about Mom, but I was in denial about mortgaging myself to make my Mom’s last days in this world a little nicer.
We were able to get her home, and she spent the last two months of her life in a warm house. We were able to make sure there was always room for people to visit, we were able to just be able to spend time with Mom, it was something I was proud of being a part of.
She died right before Christmas. Dad called me, I drove down right away. Mom was very explicit about being cremated, and only a memorial service, with no viewing. So, I got to say goodbye to her at the funeral home that day. They had arranged her nicely for us, so we could spend a little time with her. I gave her a kiss, told her I loved her and told her goodbye. I began to cry when first seeing her, but then I saw my Dad, and I forced myself to suck in my tears once again, and let my Dad lean on me. My oldest brother, my sister and myself were there with Dad. So, my brother and I helped my Dad get the main arrangements done, the logistics. Dad was in shock, and we let him console himself with our sister.
When it came for the service, everyone was in their own little world of grief and remembrance. Dad told me that he couldn’t think, and asked me to direct how they were going to set things up for the service at our church. So, I directed, I spoke at the service, I read what my sister wrote but could not bring herself to read out loud. I was too busy to grieve. I made myself too busy, I’m sure. Mom would keep herself busy all of the time, too. I guess it’s a good coping mechanism.
I stated straight up in the service that I was proud of my Dad, and proud of my siblings for all coming together to make sure Mom died in the best environment we could provide. I was proud of how Dad had evolved and did so much for Mom.
However, after the service, everyone went home. Everyone went home to heal. My father was alone for the first time in his life. I had been with him through this whole process, so since no one else was stepping up to help him being his new phase of life, I did.
I was able to determine and acquire her life insurance policy to pay for the funeral expenses. I got in touch with the state pension service, and found our options. We decided to roll over the lump sum into an IRA, and I left all of the account prospectuses around for my siblings to look at, because I said I wasn’t really good with money.
That’s why logically, I became my father’s financial power of attorney. That’s why my middle brother, always distrustful of the medical community, became the medical power of attorney.
Here’s my training for being in charge of someone’s finances: I filled out their taxes (1040A) every year when I did mine.
Add to the fact that no one else really wanted to do it, the job went to me. The thing is, at first it was not a problem. I was just helping Dad get things set up for him, so that he could live comfortably on his Social Security and taking as little out of the IRA as possible.
The end of January, Dad went to his doctor because he was having pain when going to the bathroom. After doing some tests, he was diagnosed with bladder cancer. Dad hadn’t really been able to establish himself on his own, and now he had to deal with HIS cancer.
Dad was of the mindset he wanted to beat his cancer, if only in memory of Mom. My siblings were there, but not like with Mom. For one thing, his prognosis was positive. It looked to be caught relatively early, and they could stop it before it spread. Also, I think they were all still dealing with losing Mom, and getting back into their lives, so this was too soon.
I went with Dad to the chemo appointments, I spent time with him, I helped him the best I could. The thing is, it was also getting harder and harder for me to be with Dad, and not my family. Late summer, we found out that my wife was expecting our second child. Dad had just finished his round of chemotherapy and radiation, and they were in a break period to see how it affected the tumor.
Dad was still able to take care of himself, and I spent more time with my family then, but I was still really busy. My wife had been working as a contractor for over a year, and we were starting to get ourselves back on track after 2006. Shortly before my daughter was born, my wife’s contract expired, and they did not renew it. We saw this as good timing, as then she could stay home with the new baby and enjoy time with her.
At the same time, my Dad was beginning his second round of chemo. The oncologist had planned this second round, with ample time for recovery, before the surgery to remove Dad’s bladder and prostate. This round was a bit stronger, and Dad’s resolve was beginning to wane. He was being more stubborn about following the doctor’s orders, such as drinking enough liquids to make sure the kidneys are flushed properly, to just eating right. He was starting to revert back to the man who relied on someone to take care of him.
Dad didn’t tolerate the second round chemo very well at all. All of our attempts to help him weren’t effective. He had to be admitted a few times to have fluids given via IV. He was in a rough enough state that the oncologist stopped his chemo course way early, because he was worried about my Dad’s condition. He performed another CAT scan, and ordered surgery as soon as possible.
The surgery is rough. I spent a lot of times going back and forth to the hospital in Milwaukee, a two-hour one way drive. It hurt because I couldn’t spend as much time with my children and wife, but it had to be done.
I said then, and still contend that the surgery marked where things went precipitously downhill. Because of the doctor’s concerns, he wasn’t able to let Dad recover from the chemo like he’d want, so the difficult surgery really took a toll on Dad. Not long afterwards, I get a call that Dad is in the ER. He collapsed and his blood glucose was below 30.
They told me that he had a lactic acidosis attack. The main thing which seemed to have happened was that any sort of functional short-term memory was gone. I could pick him up in my car, and he’d compliment it. An hour later, he’d ask me if I got a new car. They said that he didn’t have Alzheimer’s, but that it could be a combination of the chemo, surgery and the lactic acidosis. In any event, he was in rehab at the nursing home.
My brain has a destructive habit of going through all potential and all unlikely scenarios, and evaluating the worst-case scenarios. The best-case scenarios would rarely show themselves first. My nightmare scenario was that my Dad would be too well to be admitted anywhere for full-time care, but not well enough to live by himself. I told this to the social worker at the nursing home. She said I had a valid concern, but there really wasn’t anything else she could say.
We finally were able to get him home, after a few months in Assisted Living, where he was supposed to be getting rehab. Instead, I saw him doing the exact same thing as all of the other people on that floor with dementia or brain problems did, just sit around and watch TV.
He owned his house, but no one wanted to sell it. He couldn’t live there by himself, he couldn’t afford to stay in Assisted Living. We all met with the social worker to discuss things. My oldest brother and myself said that we couldn’t guarantee being able to help much day-to-day due to not being in town, and having families of our own. My middle brother spoke for himself and my sister by saying they’d do whatever it took. My sister wasn’t sure about it, but felt that she couldn’t speak up for herself then.
So, Dad went home. We set up a service that came in, and I told them that we could try this for a month, because it wasn’t financially feasible. His meager IRA would be dried up in less than a year at that rate. One month became two, then three…
Then came the stock market crash. I had invested him in a moderate plan, but even that took a huge hit. When we had set it up in January, it was before he was diagnosed with cancer, and the logic was that it didn’t have to be totally liquid right now. So, we could try to build a bit. However, the IRA took a 30% hit in value at the exact same time that we were requiring huge withdrawals to pay for the Assisted Living and the home care. My panic began.
In the meantime, my wife had been unable to find any work due to the financial disasters. My brain had spun many scenarios regarding this, when her contract ended early in 2008. All that was at the front of my mind was that we were going to lose everything. I spent the last part of 2008 in a constant state of panic, oscillating between panicking about my Dad, and panicking that my wife was still unemployed, and we set ourselves up where she had to work. If I ever wondered what a nervous breakdown was like, I didn’t have to wonder anymore. My sphere of influence was more a marble than anything. I spent most of the time at work frozen, unable to think. I couldn’t do more than one thing at a time, and even that took forever to do. My manager worked with me, but I was on the edge of losing my job at times. I lost about 30 pounds in six weeks, because I went through a bit where I ate something about every other day. I looked in the mirror, saw how drawn my face was, but I couldn’t do anything.
I went to therapy for the first time. I finally broke down and cried for the first time since my Mom died. Then I couldn’t stop crying. I felt bad because I felt like a failure in so many aspects of my life, and I didn’t want to expose my kids to this. I wanted them to have a happy childhood. I wanted to be a good Dad.
I talked to my sister and middle brother (who both live in my hometown, where Dad lived) about what was happening. My sister understood. My brother just told me I have to simplify my life and not to worry so much. I went away from that conversation knowing that my sphere of influence was very small with taking care of Dad. As I was exhausted, panic-ridden and scared, my brother dug in and declared that he would get Dad back to almost where he was before the surgery. He’d get him back so he could take care of himself. Dad was just lazy, and had to get moving, and all would fix itself.
I kept saying that the money was running out, and that we should talk to people to see if we could get help, but I’d be rebuffed from my brother or my Dad, who I think was influenced by my brother. As time went on, I became more and more resigned that this would not end well, and it drove me deeper and deeper into despair.
As we reduced the home care, my brother and sister had to increase their coming to help Dad. Dad never got the hang of dealing with his urostomy bag, and now that his memory was shot, there was really no way for him to be good about it. So, my brother had to go there daily. The fact that I was depressed was irrelevant. The fact that I felt such shame about that my Dad was alone at his house, where the fact that he was social was not considered. I felt such shame that I couldn’t bring myself to come down and visit for a good while. I was lazy, though.
I soon had another child, my son. My wife was finally working, but now was working third shift so that we didn’t have to use daycare — we couldn’t afford it. This then ripped our schedules even more, as now we were each having to watch the kids by ourselves. This schedule left us less and less time to be able to go down and visit. I had so much energy, and I was pouring it into my family.
It got to the point where my brother wanted to move Dad to this apartment near his house. I reluctantly agreed. My brother said this would do the trick. Dad was close to a bus stop. He was close to our church. He could walk around, walk to choir practice. Go to Barbershop practice, something he loved. This would do the trick. I was worn down. I said yes.
The apartment building was a low-income place, and it was run by a couple that managed the apartment complex that my grandmother had lived at, and I really liked. This location, however, was dark, depressing and on the second floor. The second floor up a stairway is difficult when you would get tired halfway up the stairs. Unsavory neighbors all around. It was close to my brother, though. It was close to church. Every time I visited, I had to take a deep breath to brace myself before going in, then leave with a dark cloud following me. I felt so much shame at not standing up and saying no. I felt worthless. Still, my Dad would go say, “Andy, you are such a good son.”
Whenever he would say that, a pain would rip through my stomach.
No Dad, I’m not a good son. I’ve failed on my promise to Mom that I’d take care of you. You deserve better.
I’d walk to my car, stand outside a minute to try to get the tobacco and musty smell out of my nose. I’d start my car, and silently drive off.
About 6 or 7 months after he moved there, I got a call from a social worker, this one from the county. My Dad had developed a case of Shingles on his face, and the nurse that was assigned to help his recovery from this felt that he was unable to live on his own, and needed supervision. Of course, I had felt that way, but I wasn’t around enough, my brother said. I just didn’t know, so I had no right to say such things.
My brother’s solution was money. He pushed and pushed me to take out a reverse mortgage on Dad’s house, so then he’d have money to fix up the apartment the way he wanted, so Dad could get down to living on his own. Living on his own with cameras and an expensive computer that would also control his TV, so we could talk to him and talk him through anything that would come his way.
My solution was that I’d have Dad live with me, we’d be able to do repairs on the house on a decent pace, he’d have people to talk to, we’d have someone there all of the time, as we worked opposite shifts.
My wife and I thought long and hard, and my family was excited about this. I knew it’d be hard work, but for me, it was the best solution.
I talked to Dad and presented my plan. He said no. He thanked me, but he said he couldn’t leave Sheboygan, as all of the people he knows were there. Ignore the fact that no one had visited him in a year (aside from the children). I told Dad I respected his decision, and that I wouldn’t pressure him about it. I drove home, tears in my eyes because I had no idea where to turn anymore. My best option is not even an option.
Anyhow, I talked to the social worker. We chatted for some time, and she explained that she had tried to get in touch with my brother multiple times, but he never replied. She was glad I was willing to talk with her about options on taking care of my Dad, and I began to tell her a good portion of what had been building up in my mind. I kept the reverse mortgage and computer to myself.
I called up my brother and told him about my conversation with the social worker. He became very angry, and said that they had no right to tell us what to do. He’d take my Dad off the “grid”. I yelled at him. He hung up on me.
I mention this because this was the first time in my life that I stood up to him, and he reacted by hanging up the phone. I felt a twinge of victory. My sphere of influence was slowly growing. He called back, we discussed things. We agreed to sit down with our oldest brother and my sister and work out a plan. I hadn’t taken out the reverse mortgage yet.
I talked with my oldest brother, and I told him what had been going on. I did not tell him our brother’s plan with the cameras and computer. I figured I’d let that be explained by the mastermind behind it. Even without discussing that, I ended that conversation confident that my sister and I would have him on our side.
We all met. My oldest brother and his wife did an about-face and embraced my other brother’s scheme. They said that a statin that my Dad was taking may be causing the memory issues. My sister and I had to step away and clean, mumbling to ourselves with disbelief. We ended that meeting feeling hopeless.
I talked more with the social workers, this time going into more detail about things. I told them that I finally had to get the reverse mortgage, because they weren’t going to stop spending money, and I had no money. The house is in poor condition, and requires a ton of repairs. Another one of my worst case scenarios coming true. The ever-present panic nipped at me.
I had been working at getting Dad evaluated and eligible for assistance, finally getting resources to help him like I had always wanted. This meant getting the house up for sale, setting up trusts, making repairs.
I discussed this with my brother, who months before finally was willing to see what could be done, and he looked at me and said, “Whoa, why are you moving so fast?”
He told me that he needed more time, and that he wanted to move my Dad to the apartment complex that my grandmother lived in (and I wanted him to be, if he could live by himself), and that this was going to be the thing that puts him on the road to recovery.
I was flabbergasted. He moved in. My brother decided that he needed another cat that he didn’t take care of. He didn’t go out of the apartment. He didn’t socialize. He was in the same place, just different apartment.
It’s December of 2012. I get a phone call at work. A hospital social worker is calling, because my Dad has been admitted to the hospital a day ago. My brother and sister knew about it, but my sister was busy and thought my brother would call, but well, he didn’t. So, my anger rises as I listen to her tell me that when Dad was brought in for his latest checkup, he was seriously confused and the doctor determined he could not go home. My brother was livid with outsiders trying to tell us what to do again, but at this point, the doctor had officially designated my Dad as incompetent.
This began a whirlwind of paperwork, as he was going to be admitted to a nursing home permanently. There were some things the doctor was monitoring while we were doing the paperwork, and it took me a lot of time, which at this point I had to take as unpaid leave from work, to accomplish.
We found that as we were finishing the paperwork, the medical power of attorney paperwork was filled out incorrectly, so we had to file the court for guardianship. At this point, I had no money. Dad had no money. The lawyer wanted $900 for the guardianship. As my brother was supposed to be medical POA, he met with the lawyer to start becoming his guardian.
I let my brother petition to be guardian as a last token of brotherhood to him. Honestly, there wasn’t much he could do at this point, and it gave him a sense of control and closure.
We were getting close to getting him completely moved over, when the doctor informed me that she had been monitoring his kidney function. It had at first began to improve, but then it got much worse. She then gave the diagnosis that he was undergoing renal failure, and because of his mental condition and his current physical state, he was not a candidate for dialysis.
I found myself frozen in panic for a moment, then I dove into getting him set up at the nursing home. This time, in the hospice area. The doctor said it’d be at most two months. At this point, I was completely out of things. My two brothers were the ones that did everything for intake to Hospice. I sat there numb. I consciously allowed myself to let myself deal with the fact that I was losing my father. I left everything else to them at this point.
On the third day he was there, I sat with him. I could see it in his eyes, hear the breathing in his chest. I knew it would be soon. I asked to be able to sit there alone with my Dad.
I at first sat there, silent, holding his hand. Tears were coming down as I looked at him, a shell of the man I always looked up to and tried to impress. I thought about the summers I worked with him a the wood mill, keeping up with everyone, showing that I was strong, and I could take it.
I thought about the time he slid down a muddy hill during a rainstorm, when we were going camping. I thought of his slipping back up, trying to hold onto every root and branch he could. I remembered how we laughed, and how he eventually laughed.
I thought about all of these things, but I couldn’t vocalize them. I sat there.
Suddenly, I looked at him, and I said, “I’m sorry.”
“I’m sorry, Dad. I’m so sorry.”
“I love you, Dad. I’ll make sure to take care of everyone.”
A voice growled in my head:
Yeah, like how you took care of Dad, right?
I stared at Dad, who was staring at the ceiling.
“I love you Dad. I wish you didn’t have to go through this.”
I then bowed my head in prayer and did my best to pray for him to God. I kissed him, then we sat and cried together. I sat with him in silence some more, and he drifted off in a drug-filled haze, so then I got up and found my wife.
We went over, I looked in. She asked if I wanted to go back. I said, I couldn’t say anymore. She had to lead me out, as I couldn’t see because of my tears.
A day later, my brother called me to tell me Dad had passed. I sat there, at 4am. My oldest daughter was awake. We told her what happened. I couldn’t finish saying it, and I began sobbing. I sobbed for almost a half hour straight.
I told my daughter midway through, “It’s okay to cry. I didn’t cry like this when Grandma died. It was a stupid sacrifice. Don’t ever hold it in.”
The rest of the morning, I was in tears most of the time. I got myself down to the funeral home to meet the director and see Dad once more. It was right before Christmas — just like Mom. This time, it was just my sister and myself. I allowed myself to cry.
I was numb this time, my sister said she could see it in my eyes. I had no feelings when we were picking out the items for the memorial. I didn’t do much to set it up, either. I admitted I had no capability, except to speak at the service. I let myself mourn for the first time in six years, truly mourn.
It’s still hard for me to move on. Part of that is that the house isn’t sold, so the reverse mortgage is still there, taunting me. We haven’t paid all of the funeral expenses because the house still hasn’t been sold. I’m thinking that we may not even break even after selling the house, and my name is the only one on all of the bills, no matter what my brother says.
He told my sister that I asked for this, I wanted to be the hero. I wanted to be the one in charge.
I think back to the last time I saw my father alive, how I felt.
“I’m sorry, Dad. I’m so sorry.”
The hell that I asked for that.