I originally started this blog as a way to deal with the depression and get all my feelings down in relation to my second and longer bout with infertility. A cathartic way for me to fill my nights when I just couldn’t sleep because my mind was racing with all of these inner observations and thoughts, usually regarding infertility. I used to think, “If only I could have another baby, that would solve everything because nearly everything else in my life is going great, then I would be completely happy, no more depression, voila!” I now see that infertility was just overshadowing other things going on so this blog has taken a turn, at least for tonight. Tonight I am awake after waking from a terrible nightmare about my dad. I’m not going to go into the nightmare, I don’t remember all the details, but it certainly did a number on the deep sleep I had going on.
I may have mentioned before, my dad has Parkinson’s Disease.
I’m not sure where to begin, so many thoughts running through my head when I allow myself to face this. It is difficult for me to let it all in because it can just be so difficult for me to deal with the emotions of it all. This is going to seem like I’m going off on a tangent but bear with me…. I know this unfortunately isn’t the case for everyone with any type of infertility, but for me, I felt like there was definitely a solution and that was IVF. Fortunately, in my case, I was right, it was successful. I fully acknowledge many others haven’t been so lucky and still feel out of control, maybe they are out of options or have a definite diagnosis that things aren’t going to happen and my heart of course breaks for them. I had those days where I did feel out of control and like there was no solution but for the most part, every once in awhile I allowed myself to hope because technically, I still had a chance of getting pregnant, especially so after we decided to do IVF. I am feeling completely out of control in regards to my dad. There is absolutely no cure for PD. Things are only going to get worse. I try to have hope that one day there will be a cure, especially if it is hereditary (yes, for myself and my husband as a caregiver, but mostly for my children), but I know that even if they found a cure tomorrow, unless it was accompanied by a miracle way to reverse the symptoms that have already come on, it’s too late for my dad. (This is where I breakdown crying.)
I have been extremely lucky in life. Infertility was the biggest tragedy for me. Don’t get me wrong, that’s big and even though I got my babies in the end, it has left lasting emotional and mental scars. But I’m 32 years old and I haven’t really lost anyone very close to me. I did lose my paternal grandmother when I was 20. I loved her dearly and we were close but she lived across the country so while I missed her, mourned greatly for her and still miss her, she wasn’t a person in my daily life either. There was also a great aunt and great uncle that should be acknowledged but you get the point. No great tragedies. I had believed this was still the case even after my dad’s diagnosis. I didn’t know much about it at first but, as my sister and I were crying over the shock (I was also crying because I was sort of relieved too. For the split second between him saying, “I was diagnosed” and “with Parkinson’s Disease” I imagined the worst, in regards to something terminal), Dad kept saying it was okay. If he had to get a brain disease, this was the thing to get. He told us it wasn’t fatal, it will just (‘just!’ ugh, so naive I was) affect his quality of life. In my parents’ true fashion, they sugar coated it all for our sake (I have come to hate this sugar coating, though I did have several good denial years because of it….). We hadn’t had anyone else in the family that has had this or known anyone else in real life for that matter. Of course the first person that popped into my mind was Michael J. Fox and even at that point he didn’t seem so bad off (I’m not clear on the timeline but MJF may have had his deep brain stimulation surgery at that point). Anyhow, I carried Dad’s explanation with me. At that point he was just a little slow in fine motor skills so it was a little annoying waiting for him to do this or that but overall he seemed fine. Did I mention I was 22 or 23? So I was still so young and naive, also planning my wedding, so I sort of swept this under the rug. After all, he joked about how great he would be at making martinis now. He was FINE.
Now it is nearly ten years later. My dad is in a rehabilitation clinic doing physical, occupational and speech therapy after undergoing a 13 hour surgery on his back. He his close to a bionic man with all the metal in his spine. Because he fell. Oh yeah, he also has osteoporosis (something that runs in my family on both sides) and is developing a hump. Falling is a dangerous and, for Dad, too frequent symptom of PD. Again, we all kind of made light of it at first, cracking jokes (that’s what we do in our family), pushing it further under the rug. It was just every once in awhile and he always “fell good,” meaning he could always maneuver onto his knees or butt and started wearing knee pads wherever he went. Well, when you have osteoporosis, you can only be lucky for so long. He had back surgery several years ago but I don’t remember much about it as I was living further away from home, my parents of course didn’t make a big deal about it and Dad always had a bad back, and it was just to fix one little fracture so it wasn’t extremely invasive (definitely not 13 hours long invasive) and he recovered really quickly. This one has taken a lot more out of him. And my mom as both his wife and caregiver.
After the big fall that did it this time, he went to the doctor several times. The first couple times he was told he would just be in pain the rest of his life, there wasn’t anything they could do for it. There was another fracture but rest was the only thing that could be done. While between selling our house and waiting for our new one to get done being built we were living with him and my mom for the majority of the time between the fall and his eventual surgery and I could see this poor man was in extreme pain and I felt so helpless and angry at these doctors. Finally, condensed version, one doctor had a plan – this surgery. I won’t go into details because I can’t keep them all straight anyhow but there was a plan. I was relieved then quickly terrified because they said it would be an all day surgery. I was looking at my poor father who had just been laying around the majority of the summer and as a result he had lost so much muscle mass and he just looked too frail to last through an all day surgery. The surgery was scheduled pretty quickly and the days leading up to it I just prepared myself for the worst. I was convinced he wouldn’t wake up after all that anesthesia. Thankfully he did but it has been a bumpy road to recovery. He’s still so frail looking and so helpless. We visited him yesterday and that’s probably what prompted my nightmare.
I have a very good friend who lost her husband entirely too soon to a form of lymphoma about five years ago. She had one of those boards with the sayings on it and it said, “What screws us up most in life is the picture in our head of how it is supposed to be.” How true do those words ring?!? This applied to my infertility and definitely regarding my dad. I get the most upset when I allow myself to think about the man he used to be and should still be – very active and outgoing and young for his age. Parkinson’s is a slow, progressive disease but it fast forwards the aging process. My 90 year old grandfather gets around significantly better than my 67 year old father. Of course he’s the same person inside. Dad still has the warmest heart of anyone I know and still has his sense of humor. But even the latter is affected. He used to love to be the center of attention at any gathering, telling jokes and his booming laugh, I will never forget because it always embarrassed me as a teenager and even later as an introverted adult (now I would kill to have that time back). Now he is either napping in his chair when we gather at their house or is sort of a wallflower, sitting or shuffling around for this or that. His voice has been softened and his throat is scratchy because his mouth gets too dry. I’m not sure if this is a symptom of PD or his medications, but it’s all related. His mind isn’t as sharp so when he tries to tell a joke the delivery gets all messed up. It’s so painful to see. The poor man is trying to do something he always loved to do – make people laugh – and we all just sit there, anxiously waiting for whatever corny joke he is trying to tell, and he muddles it up and we all kind of chuckle nervously. (Breaking down again.) Even then, he’ll chuckle a little and joke that, “it sounded better in my head.” God bless that man.
This is not to overshadow the toll this all has taken on my mom. I mentioned my dad was so active and young for his age. This goes double for my mom. No one can believe she is 63 years old, she looks and acts so much younger. I’m a little embarrassed (but also proud of her) to say that when my husband and I have something heavy to move, she is the one that helps him move it while I hold the door! She is simply amazing.
I thank God every day for my mom. She is such a rock and takes care of every one of us. Most of the time she does it without complaint. I’m the daughter that lives the closest (still an hour away but not a week goes by without me seeing her/them) so I think I get most of her venting, though she does talk to my sister on the phone often so maybe she gets it too. I’m fine with that though, she needs to vent, and she knows I understand. Dad could be difficult to live with before PD with some bad habits (who doesn’t have them, I know) but PD intensifies existing bad habits, like too frequent online shopping (and shaky hands often hit the wrong item to be bought) or leaving a constant mess around the house or forgetting where he put things, etc. So I hear about all of that. I also hear about how frustrating it is when he falls all the time. Of course she knows he can’t help the falling but gets frustrated because he didn’t have his walker with him or was holding too many things at once causing him to both break dishes and also not have a hand free to catch himself. You get the point, she vents, understandable.
What really kills me is when she breaks down crying. I can count the number of times this has happened and it…Freaks. Me. Out. She has never really been a big crier. Only when we were being REALLY difficult as kids would she cry out of stress or frustration (and that wasn’t even very often), then when we left home for college she cried a little more but still, not a big cry baby (unlike me). So when she allows me to see her break down, I feel just awful. I know things are really bad and really stressful for her. She did this the other day and I was so worried that things were going downhill for Dad at the rehab place. You always hear about how some senior citizen breaks their hip or something and they don’t live much longer after that. I am terrified of this statistic. My dad cannot be one of them. So when I saw her break down I thought the worst. Of course she was worried for him, he had’t had a very good last couple of days, but she was also just feeling like she was being spread too thin. His rehab facility is near us, about 20 minutes from us, but it’s an hour away from their house and she has been running back and forth daily, with the exception of staying with us a time or two (even though I tell her constantly that she can ALWAYS stay here). They have a large dog to take care of and of course regular house stuff and she just likes to sleep in her own bed. I have asked her to watch the girls here and there, which sounds terrible to put on a woman who’s already caregiver to her husband but I also know she enjoys the girls so much and she misses them and I always let her know we have an alternate option if she can’t or just needs her own time so I don’t think that is an obligation she feels stressed about, though it’s another thing she wishes she had more time for right now. She doesn’t feel like she can leave Dad for very long. The hospital/rehab facility has it’s issues. The food is terrible but Dad needs to eat (remember, he’s lost a bunch of muscle mass already), they can’t seem to get his medicine schedule right (and that’s major with PD), there’s little consistency regarding the staff and I don’t know what else, but Mom is frustrated.
Did I mention she is a retired nurse? She’s the best nurse I know and my dad is so lucky to have her there, but I know it’s taking it’s toll on her and I’m just at a loss as to how to help. I don’t know anything about his medication schedule or much about caring for a disabled person so I can’t really make her feel better by taking her place while she takes a day to recoup. My sister would be great at that but she lives about three hours away from me. All I’ve been trying to do is just be here for her for whatever she needs, whether it be venting, a homemade meal, a place to stay, grandchild therapy, etc.
Bottom line, Parkinson’s Disease sucks. It can go fuck itself because I’m just sick of it. But I do feel better getting this all out. I know my blog started and is still titled about infertility but I really started this as a way to deal with my emotions about anything going on in my life, it just so happened that infertility was at the forefront at the time. Fortunately nothing new has come up, tragedy-wise, just dealing with things now that have been pushed down or overshadowed. I know I’ve been really bad at keeping up with my blog but as I mentioned in the beginning, I started it when I had persistent insomnia and needed a cathartic outlet. Lately I’ve slept so soundly when I do sleep (and I’ve actually slept quite a bit as I have a baby that sleeps wonderfully! Don’t hate me! 🙂 ) and my days are so filled that I just haven’t had much time at all to blog. I will post more about the happy things in my life (at the top of the list, my two beautiful girls!) very soon! Right now, it is 6:30 am and I’ve been typing for the last 2+ hours and I have a child’s swing set to help my husband build today!