Preface: This post got very long and kinda dark and I’m not going to apologize for that. I needed to write it all out. You should get cookies if you actually read it all. Thanks.
I always thought that when I got pregnant, life would be blissful and I’d be walking on air. Not that pregnancy itself doesn’t come with it’s share of swollen feet, nausea, backaches and the like but I always thought I’d be able to deal with those things a little better because of how badly we wanted this baby and how happy I was to actually get pregnant. But sometimes life throws you curve balls…I haven’t been writing much because honestly, most days it just felt too raw to write about. I’ve decided that I need a little bit of an outlet so I guess now is as good a time as any. Here’s a more clear picture of what has been going on.
Back in September my Wife’s Uncle started to decline more steadily from a form of Leukemia that he had been battling on and off for 15 years. He was in his 80’s and although he was under excellent care, it became apparent to us that he had relapsed and had grown pretty tired of fighting. We are very close with him and his wife and we tried to remain positive because he’s always been very strong through it. When Mrs. E was 20 years old, her parents and siblings moved to Florida and she decided to stay here where her school and girlfriend were, and since that time her Aunt and Uncle became more like parents to her. Sometime in mid-November we got a phone call that he had been taken to the hospital and that things weren’t looking good. His body was just not responding to treatment anymore and the family had decided to reduce his care to “comfort only” measures and bring him home (he hated hospitals after all he’d been through). We went to see him and held his hand, talked to him, hugged him told him that we were having a boy (we hadn’t announced the gender of the baby yet) and wished him peace. He passed away the next day.
At about the same time that that was going on, my own grandfather had started to show signs that his dementia was becoming more severe. Caring for him had started to take a physical and emotional toll on my grandmother. He was often confused, hallucinating and getting very aggravated on a more regular basis. He started having “accidents” and would fall when trying to walk and she couldn’t help him up anymore. My family started taking turns sleeping overnight at my grandparents house to help her care for him. I learned a lot of things about about Alzheimers/advanced dementia in those months and he was definitely a textbook case. Most people think that the disease is merely mental but the most heartbreaking thing about it is that that’s not true. Over time with it, the body literally “forgets” how to do some of it’s most basic functions. Incontinence becomes and issue, walking and muscle control can become foreign, eventually even swallowing and breathing become challenges. He was already having trouble with the first two. One night, he got very aggravated and my grandmother woke up to find him standing over her side of the bed screaming at her. She wasn’t able to calm him down and she feared for her safety so she called the police. Eventually, they helped settle him but they sent a social worker out the next day to help her start the process to place him in a long-term care facility. He had become too severe for her to care for him at home anymore and we reluctantly moved him into a nursing home a few days later.
In the mean time, we had our gender reveal party, we were spending most evenings running over to the nursing home to visit Grandpa and tried to get through our childbirth classes and prepare for the baby when we had spare time. Right before Thanksgiving, we became worried about my grandfather’s eating and he was losing a lot of weight and running a high fever. He had pneumonia and was coughing a lot so the doctor wanted to send him for a swallowing evaluation. It showed that he had been aspirating a lot of his food (half of it was essentially going into his lungs) and his swallowing reflex just wasn’t working properly. The pneumonia got worse and he was admitted to the hospital to recover while he waited for a feeding tube to be put in. He was very weak and I thought we were going to lose him in those few days. His confusion was at it’s height because he didn’t adjust well to new surroundings and he’d already gone from home to the nursing home to the hospital. It was hard to watch but kind of a blessing because he didn’t know he was missing Thanksgiving at home with our family. I was literally holding back tears sitting around that table without him last year. Only one time in my life, when I’d gone to spend Thanksgiving with Mrs. E’s family, had I spent a holiday away from home with him. I should probably explain that my deep attachment to him was because he essentially had become my father. My parents split up when I was 2 years old and my Mom and I moved into my grandparent’s house with them. He became my father figure and my grandparents took on a lot of the responsibility of raising me.
He recovered from that bout of pneumonia, got the feeding tube and was moved back into the nursing home (another hellacious adjustment period) and seemed to be recovering well. He had one nurse that was very blunt with our family and told us that he would probably continue this cycle of getting pneumonia and going to the hospital, receiving antibiotics and being sent back to the nursing home indefinitely. That eventually his body would become resistant to the antibiotics and his body would shut down. It was sobering to hear someone lay it out like that ahead of us, especially when he seemed like he was recovering. Over the next month he did make another trip to the hospital for a few days and back, again for pneumonia. Mentally, he had his good days and bad. He stopped asking when he could go home and started saying “I love you” and “I have a really good family” all the time. Someone was with him in the evening every night and took my grandmother over to spend time with him every day. They celebrated their 66th wedding anniversary just before Christmas and he had an amazingly clear day that day. He was joyful and asked his wife for kisses and to sit on his bed with him continuously. Out of all the confusion, he never forgot who we were and he ALWAYS remembered that I was pregnant and asked about the baby constantly. He was so excited for the baby to come and that it was a boy. He also hated to be “scruffy” or unkempt and in the last few months I had taken on the responsibility of cutting his hair and shaving him every other day or so at the nursing home. It was really more about being fawned over than anything else, but he always reminded me that that was my job and was never bashful to ask when he needed to be “spiffed up” for my Grandma.
On Christmas Eve, I had my own breakdown about it. I felt wrong celebrating the holiday with the rest of my family when he was “in there” all the time. It felt like a prison for his illnesses. Even though we visited frequently and at length, it never felt like enough. I knew that he was slowly slipping away and I cried about it hard. When you are on the verge of becoming a parent, it can feel like a very scary push into adulthood with no turning back. I felt as though I had a little girl inside that was very upset that things weren’t the way that they were supposed to be anymore. Those holiday weeks I struggled and felt very much “in limbo” between those two worlds. The rational adult in me would focus on doing what needed to be done, and could handle dealing with his declining condition in stride, however the girl that hated watching what was happening to her Grandpa was having a hard time keeping it together.
As much as I hated to leave town, we had planned our final vacation before the baby for just after New Year’s. We were escaping for a week to Florida to enjoy some warmer weather and time with Mrs. E’s family. As soon as our flight landed, I came down with a bad cold/flu and I was miserably sick most of that trip and wasn’t able to take much to curb the symptoms. My wife wasn’t feeling well either and ended up having to go to Urgent Care on our 2nd day to get checked out because there was blood in her urine. Everyone else in her family has a history of kidney stones, so they dismissed it as that, gave her some meds and sent her on her way. As much as we were trying to make the best of things, it turned out to be a pretty pathetic vacation. I was grateful to be able to lay in the sun and float in the pool though! It took some pressure off my weight and back which felt good cause…Oh yeah, I was 7+ months pregnant! Unfortunately, there were days that I had to stop and remind myself of that with everything else going on.
We returned home but I wasn’t allowed to go see Grandpa because the flu was rampant, I was still quite ill and therefore the nursing home had a quarantine in effect. Can’t say I blame them. In those days while I recovered, we readjusted to life a bit and we had an appointment with a family doctor. We were joining the practice so that when the baby comes we could all go to the same place. She also referred Mrs. E to get an x-ray and go see a Urologist and get her kidney stone thing figured out. She got that all setup and in the mean time Grandpa was having lots of “bad days” and was barely communicative. He frequently had high fevers and was on more antibiotics and slept 20+ hours per day. I got a call at work one day from my Mom at work. She was crying and simply told me to come to the hospital, they had just taken him there by ambulance and that the doctor had advised her to “call the family in”.
When I got there, they were telling us that his prognosis was not good and that he had possibly hours to live. His fever was high, his blood pressures and oxygen levels were dangerously low and they told us that he was in septic shock. They placed him on a breathing machine that was forcing pressurized oxygen into his lungs and they gave him fluids and antibiotics. The doctor advised my grandmother to call a priest to come in and have his last rites read to him. We were beside ourselves. They admitted him and moved him up to a private room and the doctor told us she would be very surprised if he lived through the night. So we called all of the rest of our family and stayed by his side, holding his hand and talking to him all night. From about the time he came in, he was not very responsive. His eyes would scan around the room briefly in response to certain noise or touch, but the most we saw from him was when he was being re-positioned in bed. His eyes would stare open with a look of pain on his face. We tried to make sure that a family member was always there to comfort him and be in his view but it was so hard. He was on some morphine to keep him comfortable but all we could do was sit there while he slept. And wait.
That first night was excruciating but he lived through it. And the next day, and the next. I took off work and my Mom, my cousin and I took “shifts” in his hospital room. There were never less than 2 of us with him at a time and someone was always awake, watching and making sure that we noticed any big signs of decline or discomfort. The nurses were so nice. I don’t know how we would have done it without them. They brought us food, came in and talked to us, laughed with us, some even cried with us. Mrs E even took a shift when she could. We told stories and held his hand, until that even seemed to cause him some pain and we had to quit doing that too. The doctors informed us that his vitals were still so weak and he was in kidney failure now. His body would continue to shut down and it was only a matter of time. Our vigil continued.
Four days after he was admitted, there was nothing more that we could do for him. All of my aunts and uncles and most of my cousins had flown in from out of town to come and sit by his side. We made the decision to take him off the breathing machine, stop antibiotics and give him a morphine drip. Again, we were told that he wouldn’t live through the night. And we waited. I had never seen some members of my family so stripped down like that. Some just couldn’t do it. They made excuses to leave the room every 10 minutes, or cracked a lot of jokes. It became frustrating at times to see how we all dealt with things differently. My body was tired from sitting and sleeping in hospital chairs every day and night but I couldn’t leave him. It made me too anxious. We thought when he was switched to a regular oxygen cannula that he probably wouldn’t be able to sustain himself for very long, but he proved us wrong again. We watched him day and night for three more days and could not believe that he had now outlived his original prognosis of hours, by an entire week. My grandmother made the decision to formally put him on Hospice care.
That day I sat with him all day. I talked to him, told him what the weather was like outside and about the baby. I noticed that his color looked a lot more drained and the nurse said his heart rate was a bit slower but we had all learned in the past week not to count him out just yet. So we watched Ellen in the afternoon (he loved Ellen Degeneres, it really was adorable) and I even caught a nap beside him while the sun was setting. His breathing seemed slow and steady as I had always remembered from his catnaps. I used to climb into his recliner and catch a snooze with him all the time when I was growing up and this felt sort of reminiscent. A nurse came in to clean him up and I helped a bit. We shaved him and although he didn’t seem responsive to anything else, he stretched his top lip in response when I shaved under his nose. It made me smile because I used to ask him to “go like this” and do that for me when I would shave him at the nursing home. I said bye to him for a while and left to get some dinner. Mrs E. had been busy at work and hadn’t been to see him for two days so she was coming over after we ate to see him that night.
We got there at about 8pm and he seemed to be resting comfortably, but I soon noticed that his breathing was much more shallow. My aunt and uncle were also there and we didn’t want to call the family and cause unnecessary alarm but after about 10 minutes of watching him, it was apparent that this was a big change and we started calling the rest of the family and warn them that he may pass away that night. His breathing got slower and I asked Mrs. E to go get a nurse to listen to his heart rate for any big changes. I stood by his side and rubbed his head, told him that we loved him and that everything would be okay and in the next two minutes, he took his last breaths. By the time the nurse got there to check him there was no detectable pulse and he was gone. All of a sudden after an entire week, there was nothing but heavy silence and we cried. He died around 9pm that night and and in the next hour, the rest of my family arrived and said their goodbyes. Watching my grandmother enter the room, rest her head beside his and weep was one of the most heart-wrenching things I’ve ever witnessed. It didn’t even feel real. We all knew that he was finally at peace and that we had done all we could do while showing him immense love and respect, but it still felt like he had been ripped away from us.
Over the next week, we all grieved but I found it harder to escape the images that kept replaying in my head. I tried to rebound from the exhaustion of only getting 2-ish hours of sleep per day and living in a hospital room. I had lost 14 pounds and felt guilty that I hadn’t been protecting my baby as well as I should (later our midwife confirmed that he’s just fine though). The funeral was a blur. I only remember some of the details and that I cried an awful lot. I did feel relieved that we had all found some peace, and as difficult as it was to watch, that his decline only took months and not years but I was still feeling anxious, like I was waiting for him to die. I ended up having to contact his Hospice service and inquire about their counseling services for family members. I was dealing with a lot of post-traumatic stress from re-living his last days over and over again. I talked to someone and it helped a little but the dreams and flashes still haven’t stopped. I went back to work and have been trying to pull things back together, but another week has gone by and I still don’t feel like I am “my old self” most days. I’m sure the pregnancy hormones don’t help but I’m not using them as an excuse. I don’t think that emotionally much of this would be different if I weren’t pregnant but people treat me as though it should make a difference.
We decided to go ahead with our baby shower even though it was the weekend between my grandfather’s passing and his funeral. Part of me just didn’t want the hassle of rescheduling, part of me felt like we needed a happy occasion and part of me didn’t want to celebrate at all. It was nice to see everyone, but difficult to put on a happy face. I was OK but barely and when one person hugged me and told me that she lost her grandfather when she was 8 months pregnant and she knew how I felt, I lost it. THIS IS SUPPOSED TO BE SUCH A HAPPY TIME! WHAT IS WRONG WITH ME?!?!? We are both so excited for this baby, but if I could pause this pregnancy and take a break I would do it in a heartbeat. I never thought I’d feel like that.
Somewhere in the middle of all that, we got Mrs. E’s x-ray results back. It looked like she had some kidney stones and possibly a blood clot in her bladder. We didn’t know what the ramifications of that were but she was told that she would find out more at her Urologist appointment…which was yesterday. When I got home from work we sat down so that she could tell me what they found at her appointment. I knew it couldn’t be good because she waited to tell me in person instead of over the phone. As it turns out, the doctor wanted to do more testing to be sure what he was looking at because he didn’t think it was a blood clot. He used a scope to look inside her bladder and confirmed that what they had found were actually two tumors. He explained that bladder tumors are pretty much always malignant and that they’d have to schedule her for a procedure to have them removed ASAP and do a CAT scan to make sure nothing had spread to other organs. After they take the tumors out and evaluate the tissue, he’d be able to give us more information about the type of cancer she is dealing with and if she will require chemotherapy as a follow-up. Her prognosis is pretty good because they are small tumors and they can hopefully be removed pretty easily. Unfortunately, there’s also a tumor on one of her kidneys. It’s more likely though that that is benign and may even go away on it’s own. I’m assuming that we monitor that and figure out how to deal with it after we get past the bladder issues. Her CAT scan was scheduled for this morning and we’ll probably get those results tomorrow.
She had had a few hours to deal with this, but I was reeling from what I had just heard. I thought we were going to sit down and talk about kidney stones and blood clots and medication, not tumors and surgery and chemotherapy. I couldn’t find words and “bladder cancer” kept echoing through my head. What the fuck was going on? We’re supposed to be having a baby in less than 6 weeks, not dealing with this shit. I got scared. CANCER. I had flashes of struggling through years of treatment as her uncle and aunt had and thoughts of possibly having to raise this kid on my own. She was able to remain calm. She always does. I think she was more worried about me than she is about herself. She’s so selfless.
Her procedure is scheduled for Tuesday. She called and told her sister, brother and dad what is going on, but other than that we’re really not saying much yet until we know more about what we are dealing with. She knows I’m writing about it here and thinks that’s okay because she wants me to have some space to cope. If you know us in other outlets that converge with family and friends, please be discreet about this until we are ready. There’s just only so much that we can take on at once and for now this feels easier if we keep it close. This is not at all what I thought my 3rd trimester of pregnancy would feel like. I just want to be happy. I just want to buy baby things and organize his room and decorate and focus on how our life will be changing for the better. Not this. Not now.
One of the hardest things about the past several months is that I’ve started to get upset with how people respond to me. I am not fragile. I am an optimist but when people go on and on about how everything will be okay or tell me to look at the bright side, I want to slap them. I’m not an idiot. I realize it’s the conventional nice thing to say, but it’s not like I don’t already tell myself those things and I’m tired hearing it. I don’t want to hear most people’s comparison stories and how they experienced this or that and know what I’m going through. Or how this stress and sleep deprivation are preparing me for “life with baby”. Quite frankly, I wish I ONLY had the stress and sleep deprivation of a newborn to deal with right now. Some of my friends that I thought would be there for me more have been starkly absent and that hurts too. I don’t always need to be consoled, but it is nice to feel like people think of you, or ask or care at all. I just need to feel how I feel when I feel it. I’m not depressed, I’m sad and scared and a little bit angry. And that’s OK for now and it’s all I can do. It’s how I’m processing.
I can’t wait until we have enough focus again to spend more of it on preparing for the baby. We all could use a little happy right now…We’ll get there. We have to. And then I’ll write about that.