Dementia at Fifty!

I’ve said it before, I was 18 and Larry was 38 when we fell in love…age was just a number back then, not so much now, but trust me when I say this could happen to any marriage, and it takes a toll!

If I hear “you knew what you were getting in to when you married someone 20 years your senior “one more time, I’m gonna lose it! Seriously, enough! I won’t be reprimanded for marrying my husband. He’s always been a good man to me, once an excellent provider, gentle, kindhearted and sometimes a little dirty minded. OK, rant over!

So much has been happening lately, but not like “moving forward”, it’s more like a carousel and we just keep going in circles. We finally made it home from Michigan June 29th and I have been exhausted since before then. It’s stressful being the provider, homemaker, bill payer, work from home girl, grocery shopper, garbage to the road person, doctor appointment taker, dinner cooker, weight management inspector and wife/caregiver all while trying to be sensitive to everything he needs! What if I screw up? We were at the cardiologist Monday, Tuesday and Wednesday of last week. My car is in the shop, my dad is letting me use his spare pickup, it’s a stick shift and driving one hour each way three times last week has my healing wrist/hand screaming! Physical Therapy was welcoming Friday, the muscles on the top of my hand were burning! We were back at the cardiologist’s office Monday too!

These doctor appointments will start to wear you down, and then the lab work, man it’s a lot too, all the while there are still the nephrologist, urologist, optometrist, neurologist and the PCP appointments still to keep up with, and have I mentioned keeping up with all the medications!

I’ll skip ahead a little, Larry had the Transcatheter Aortic Valve Replacement (TAVR) procedure at the end of August, it was successful, and he began feeling somewhat better physically afterwards. That lasted about 2 weeks and during that period he wore a 24/7 heart monitor. We received the results from that in September. One more thing to add to his medical records list, A-Fib or Atrial Fibrillation. He’s in it 100% of the time and some of the symptoms are irregular heartbeat, heart racing, chest pain, labored breathing & fatigue, as if he’s not already experiencing these things due to other medical conditions. He’s on the right meds for this condition and we have an appointment with an EP Cardiologist (Cardiac Electrophysiology), kind of like an electrical heart doc. Until then he’s taking it easy.

EASY? Nothing has been easy as of late, life is hard right now! There have been significant changes to Larry’s mental state since our last neurology appointment. A couple of weeks ago we met with his doctor, cognitive tests were attempted, but didn’t go well. I feel like the appointment was more for me than him to be honest. The doctor asked questions like “can he dress/undress himself” or “shower”. The answer is yes, but not properly. It’s frustrating, a typical shower day consists of me constantly reminding him to wash his dirty butt! When he’s finally ready, I start the water to ensure it’s the right temperature, throw a towel over the shower door in case he gets water in his eyes, tell him to wash all the IMPORTANT areas, ALL OF THEM!! I leave the door cracked and he calls me when he’s ready for me to shut the water off and help him dry off reminding him to brush his hair, teeth and put deodorant on. If I am not able to help with this activity, it’s a nightmare for us both. His clothes will be on inside out and/or backwards, from his shirt all the way to putting his shoes on the wrong feet. As I am telling the doctor this at our appointment he senses my frustration, he’s a kind man and I wonder if someone dear to him has experienced some form of brain injury for him to be so empathetic to our situation. He offers a book for me to read, the name is, The 36 Hour Day. I cannot recommend it enough. As I read Chapter 1, I sobbed, it was like I was reading our story. I’ve never thought, for a moment, what it must be like for him to be overwhelmed with something as simple as a shower and cause so much anxiety, but it does. The book explains it well too, I need to remember Larry’s world has gotten a lot smaller. He still remembers people, places and things from years ago, but it’s the stuff he doesn’t talk about that is hard for me to recognize and I pray I can grow to understand things more clearly as time goes by.

One thing I have learned, and the neurologist reiterates to me, is time is precious. Vascular Dementia does not have a scale such as Alzheimer’s, which is Stage 1 to Stage 7. Right now, Larry is between Stage 6 & 7 comparing his symptoms to the Alzheimer’s scale. However, Stage 6 and 7 can prove to be very long stages to go through, but now that we are here, there are no more spur of the moment trips or vacations to see family in other states. Unfortunately, it also means crowds can over-stimulate him causing him to become angry or appear lost at times. If you know him, you know he’s not the same as he once was, but I am sure he will know you too! He’s not there yet, you know, forgetting who people are. He forgets to eat or forgets to take his meds, but rest assure he can remember when his boys or grandchildren are coming for a visit.

This struggle makes me feel so alone, I know I have family and friends out there who care and love us both and would help if I reached out, but reaching out is so hard to do sometimes. Pray for me, specifically that I have the strength to hold it together on those really tough days and that I remember to laugh and find the humor in all of this. I’m growing old right beside Larry but I refuse to let this disease determine who I am!