Sunday, March 2, 2025

Parents Raising Parents

 I was 6 weeks shy of my 19th birthday when I gave birth to my oldest son. I was a child raising a child, and I often say that he and I grew up together. Those early years were a challenge, to say the least. Aside from us being very young parents trying to raise a child at the poverty level, I suffered from suicidal depression and almost hurt my baby twice. 

There are some advantages to having children earlier in life, though. Our youngest graduated high school when I was 43, an age at which some of our friends were wrangling the demands and schedules of multiple school aged children. I now have freedom of time and finances that wasn't possible while raising children, as well as the relative good health to enjoy it. Being a young parent increases the likelihood of being a young grandparent, with energy and stamina to truly enjoy those young years - though I am perfectly content to wait for those precious grandbabies while spoiling my precious grandfurries. And I am honestly incredibly thankful that neither of our boys followed in our footsteps of unintended early parenthood.

So, here am I, now, at a crossroads.

Have y'all seen the meme asking the question, "Is anyone else having a hard time raising their mother? That lady don't listen."? Well, my mother listens - but she doesn't always remember.

For a little over a year now, Mom has been demonstrating signs of age related forgetfulness. She IS 70, after all. But even age appropriate signs of mental decline are red flags when there is a rampant family history of dementia, so I made mental notes when Mom asked me a question more than once or had forgotten we had already discussed a matter. A few weeks ago, however, that table was turned when she brought up a situation she believed she had already told me about but that I am 100% CERTAIN she did not.

At some point in the late summer or early fall last year, Mom had 2 separate episodes of misinterpreting what she was hearing. The first occurred when her youngest grandson was visiting. He was sitting on a step facing away from but talking to his grandmother when she suddenly couldn't understand what he was saying. She heard his voice, but the words no longer sounded like English. She said it sounded like he was speaking Russian. Well, I am here to tell you with absolute certainty that my 11yo nephew does NOT speak Russian. The second incident occurred not long afterward while she was conversing with a friend, and, once again, it sounded they were speaking Russian.

Why was I JUST hearing about this 4-5mos after the fact?! Because she honestly thought she had already told me.

Thankfully, being a retired nurse, my mother had the wits to recognize that these episodes were a matter of concern and scheduled a consult with a neurologist. The day she'd had her consult she called to "update" me on the situation that I had no idea was happening. It took a minute for me to wrap my brain around not only what was going on episodically, but also that she TRULY BELIEVED she had already told me. Oh, and she didn't want to me tell my siblings until more was known about what had caused the episodes. Considering the fact that I am not in the habit of regularly communicating with either of my sibs, that wasn't going to be an issue. However....

My sister lives 6 houses away from our mother. Mom's house is on the corner, my sis's house is in the cul-de-sac. There's not even a street that needs to be crossed for one to get to the other. I, on the other hand, live 2hrs away and require highway travel to be of any physical use. The initial concern was that Mom could be having focal seizures, but let's not tell the kid she lives closest to and would be the quickest to respond in the case of a true emergency.

Fast forward a few weeks. Mom has had an EEG and MRI of her brain. I have no point of reference for an EEG beyond understanding the usefulness of the test. The report of the results may as well be written in Russian since I wouldn't be able to understand it anyway. But the MRI, that is more my territory. Per the radiology report, Mom has damage to the speech center of her brain consistent with micro-strokes or focal seizures. At the time of this writing, the jury is still trying to sus out which is the more likely. Also, per the rad report, Mom's brain shows changes consistent with the early stages of Alzheimer's disease. Oh, and don't mention it to my siblings, yet, because Mom hasn't figured out how she's going to tell them.

The crazy train has officially left the station with my mother on board.

On one hand, my mom IS 70. She is almost a decade older than her mother was when she began displaying signs of dementia. (Her sister/my aunt is not a good comparison since her crazy has been chemically enhanced by way of rec drug use for longer than I've been alive.) She always strove to live as clean a life as she was able, never smoked or used recreational drugs, and enjoys alcohol only occasionally. She retired from nursing with a Master's degree in anesthesia and has remained physically and mentally active in her retirement. All of these life habits play in her favor and, along side modern medications, can significantly slow the progress of the disease.

On the other hand, Alzheimer's is a cruel and merciless mental decay that wreaks more havoc on the hearts of their loved ones than on the patient themself. Over the next however many years, I will watch the person my mother is now deteriorate and die, most likely before the vessel in which that person resides. And if there were a third hand to throw into the fray, heredity dictates that I, too, will likely rot mentally while causing heartache for those who love me.

Ironic sidenote: Last week I was invited to participate in a research study that intends to decode the DNA genome to determine risk factors for specific health maladies, mostly cancer markers and familial links to high cholesterol and heart disease. The consent for participation does state that ancestry will be determined, and that the results could reveal information that is unwanted or hard to hear. I wonder if Alzheimer's and my stupid connective tissue disorder will show up.

When Mom's husband passed away years ago, she decided to move closer to one of us kids. The 3 of us live in different areas of the state, and she did look at options near each of us, ultimately settling on being close to our sister. I don't know what criteria Mom used to make the decision, but I would guess some of it had to do with the fact that my sister has the youngest of the grandchildren and the most able-bodied spouse, all of which could help Mom with general upkeep of house and home. But my sister has proven that she is either blissfully ignorant to or refuses to acknowledge the level of care our mother will be needing over time. 

Less than a year ago, when Mom had shoulder surgery my sister was creeped out at simply helping her get dressed with her arm in the sling. In the weeks before the surgery, I contacted my sister to ask what care, if any, she had planned on helping with. She had thought of making extra portions for dinners to share with Mom and helping her with personal hygiene, but never considered care of the animals - feeding, walking, one is on insulin - or assisting with the everyday activities of living life. So I took a week+ of FMLA to take care of Mom post op. Either my sister needs to get her head wrapped around and be willing to do what is needed for Mom as this disease progresses, or else either my mother or myself will need to be relocated.

Kids raising kids. Care for the caregiver. These are concepts society is both familiar and concerned with. But parenting parents isn't as visible. Yes, it falls under the overall umbrella of "care for the caregiver", but "parenting parents" feels so much more specific. I am fortunate in the timing of events in my life. I am no longer responsible for children in my home, nor do I yet have grandchildren, so I am able to focus on mothering my mother if that is what is needed in this moment.

Sunday, January 19, 2025

Side Quests

The journey to wholeness continues. But seldom, if ever, is a journey a straight and easy path. What fun would that journey be anyway? And how would one become stronger if never under stress? The saga of any conqueror is full of side quests. At least, that's what Monty Python leads one to believe in The Quest for the Holy Grail.

My journey began at a doctor's appointment with the intent to find wellness. We discussed my cold sensitivity, my surmising about bipolar disorder, and the fact that my age dictates that I am past due for several unpleasant health screenings. A referral to a psychiatrist to more adequately assess bipolar disorder and a battery of lab work to investigate the cold sensitivity were granted without issue.

The result of the psychiatric assessment was treatment for hypomanic bipolar disorder. The gradual increase in the medication messed with me with every step up. The introductory dose caused a mid-day energy crash for several days. The moderate dose gave me wicked brain for almost 2 weeks. I was still dealing with the brain fog when it was time to step up to the current maintenance dose. The maintenance dose has plagued me with sleep interruptions and nightmares - because I need more help experiencing terrifying dreams during the far too little sleep I get on a good day. To make a crummy situation crappy, I don't feel any improvement in my mood with the medication.

As for the test results, all were within normal ranges. As were a second round, testing for less obvious reasons for cold sensitivity. Most likely, the cold sensitivity has more to due with my connective tissue disorder as there is a correlation between the disorder and nerve damage within the skin. So unstable joints and a heart murmur aren't enough for this fabulous condition. Now I get to be cold for the rest of my life. 

Now, Side Quest #1.

My mom has been experiencing pitting edema (swelling that leaves an imprint if pushed on with a finger) in one leg and foot for several months. She can't remember the last time she could actually see the bony part of her ankle and there's an area at the base of her toes that looks almost bruised, but she's had no known injury. After a lack of results from working with a podiatrist, she was referred to a neurosurgeon with the idea that her symptoms were stemming from damage within her spine. Her recent MRI did determine degenerative disc disease throughout the lumbar region of her spine. She has yet to attend her follow up appointment with the neuro, but the prognosis looks initially like surgery.

As was evident when Mom had shoulder surgery, my sister, who lives on the same street as our mother, has NO CLUE was to expect nor any idea how to care for Mom post-op.  I, who lives 2hrs away, was the one who took a week of FMLA to take care of Mom after her surgery. We are still waiting for the next step of this side quest to be revealed.

Side Quest #2

Our son in Texas has had a piece of shit week. In a 7 day stretch, the poor kid has called us multiple times in a panic and on the brink of a meltdown. Twice he was actually in the midst of a meltdown. To a point where I couldn't understand the words he was trying to say. We had to talk him back from the ledge each time. The short story is his car broke down several times in a single week and one of the repair guys did him dirty by installing a faulty radiator. $1400 and an awful lot of calming and reassuring later, he was then fired from his job for missing work due to his car. Truth be told, I know this kid and his personality - because it is exactly like mine - so I have no doubt that played a role. But the nitty gritty is that because he was melting down as a result of just not being able to deal with the stress of everything falling apart all at once, he no-call-no-showed and was let go. He did have an interview already scheduled for the next day, so there is hope. If you're a praying person, please add him to your list as he desperately needs something to go well for a change. We are still waiting for the next step of this side quest to be revealed.

Side Quest #3

I have had tingling in one arm intermittently, yet daily, for 5 months (as of the time of this writing.) I have experienced thoracic outlet syndrome twice before, and chiropractic care combined with deep tissue massage were able to resolve the issue within a few months. This tingling doesn't feel the same as TOS, and the chiropractic care and deep tissue work aren't making a dent. So I finally asked for a referral to my neurosurgeon, expecting imaging, an exam, and a recommendation for steroid shots.

Yeeeeeaaaaah. I'm never that lucky.

As anticipated, there was imaging, and more of a consult than an exam. The imaging was shocking, horrifying, and downright depressing. The abbreviated version is that I have degenerative disc disease throughout my entire spine, most significantly in my neck at 3 levels, as well as signs of arthritis in the same area, and the severe loss of disc height has lead to bony malformation (essentially bone spurs) of the vertebrae. The only real treatment? Cervical spinal fusion.

Yes, major surgery is the only option to truly correct the damage done. Unfortunately, because insurance companies dictate the flow of care instead of doctors and patients working together to determine the most reasonable path to wellness, I get to endure 6 weeks of physical therapy that in no way is able to improve nerve impingement due to spinal degeneration, as well as an EMG and NCT (I'll let you look those up.) Then, should PT prove unhelpful and the testing prove nerve issues, the insurance co MIGHT cover an MRI in order to determine that the tingling is, in fact, a result of destruction of spinal integrity and that conservative therapies were a 6 week waste of time.

And the best part? This is most likely due to my connective tissue disorder.

My fucking, life altering, enjoyment killing, freezing cold, never ending injury inducing, heart damaging, spine destructing connective disorder. How did I get so lucky?

Another fun aspect to this latest blow is that I know how this surgery is performed. I've done intra-op imaging for these cases - ironically, with the neurosurgeon I see. The only comfort is knowing how he functions in his OR - he is generally unrattled, even when the case goes less than smoothly, and he always does right by his patients. Those are reasons why I chose him. But in a gruesome nutshell, they slit your throat, move the trachea and esophagus over to one side, put spacers between the vertebrae where the discs used to be, then put a metal plate linking the damaged vertebrae together on the front of the bones. What's not to gleefully anticipate? 

However, we are still waiting for the next steps of this side quest to be revealed.