Tired. Just tired.

June 5, 2025

I'm so tired.

I know there are those of you who are dealing with, or have dealt with, and care(d) for family members who have dementia, Alzheimers, schizophrenia, and other mental illnesses. Those are some extremely tough cognitive impairments that are not only hard on the person who has them, but also on their families, many who end up being their caregivers.

I've cared for Jerry since before we were married. He could never keep a job because the combined lot of his disabilities interferred with that. Back then, it was all the physical disabilities. Try as he might to be the wage-earner of the home, it was never entirely possible for him. I had a job I loved (garden center), but eventually ended up teaching myself web development and graphic design so that, when he finally was permanently disabled and unable to hold any job, I could stay home and care for him and still bring in much-needed income.

Then, his health became so bad that we admitted him to a nursing facility in 2014. That one closed unexpectedly, making it very hard on over 100 families trying to find placement for their family members in a very limited availability of facilities. Jerry was the last out. I cannot even tell you how rough a time it was back then. We had to hop through three other nursing facilities, and then, in 2018, because the facility he was in at the time was neglecting him, I brought him home.

I'd specifically found this apartment because it's for age 55+ and low income. All the apartments are wide-open spaces and handicap accessible. Perfect for Jerry. And me eventually.

Then two years ago, his medical conditions began worsening. We'd tried finding new placement for him... but wow, every facility has always been so full!

Then, I got a call from the one we admitted him to the day after Christmas 2024. Great place! The one everyone around here wants for their family member! (Well, there's one better, but it's strictly private pay and only the rich folks can afford it.)

Annnnnnnd then 2025 began. What a horribly hard year this has been.

Jerry's actually been in the hospital five times this year for the infection (pseudomonas aeruginosa) that stays in his left kidney, causing the UTIs and constant acute need for antibiotic infustion.

Which in turn meant he kept having to be transferred to a different nursing facility that could handle more than twice+ a day infusion, because the one where we wanted him only does once a day.

Back and forth... to the hospital, to the facility, back to the original facility, then to the hospital again........

It's a vicious cycle.

So I made the decision that he would just stay at the nursing facility that does the multiple per day infusions until this thing is brought under control. If ever. It's farther away than the other facility, and so, since my car is not trustworthy, I don't get to see Jerry unless he had doctor appointments in town (I meet the bus there and get him into the appointments so that I'm still involved).

What I've learned is that everyone - yes, every person - normally carries this strain of bacteria in their body. Some of us are just better at fighting off the explosions of growth. But Jerry, with his multiple medical conditions, is unable to do that without antibiotic help.

We were told by the hospitalist during Jerry's last stay in the hospital that there is a new urologist in town. We'd heard that and said, yes, we wanted Jerry to see him. My son saw that urologist a month ago and that doctor has gotten John back to a life without pain! John had complained about constant kidney stone pain since his 3+ month of hospital stays and sugeries in the summer/autumn of 2023. His previous urologist said it was all in his head, that there shouldn't be any pain.

Well, the new urologist believed my son. He ordered some scans, which proved John did indeed have problems. John had surgery May 23. The doctor removed (lithotripsy) ALL kidney stones. There had even been some in a bunch blocking the exit from his left kidney, making it high risk for kidney failure. Long story short, John is out of pain and follow-up scans show there are NO kidney stones in either kidney! Praise the Lord!

This is not to say John will never have problems again... because once you have a kidney stone, you are prone to more in the future. But we will pray about that!

Annnnnyway....

Jerry's appointment with the new urologist was this past Monday. Due to so many appointments scheduled for Jerry with different doctors and the limited dates left for patients, his scan isn't until June 17.

In the meantime, Jerry's dementia/Alzheimers/whatever it is has increased drastically since the summer of 2024. I can't even explain how hard it is to talk with him over the phone nowadays. And the "stories." Oh my. I'm so glad that the facility where he is keeps in constant contact with me. My point of contact is the Social Services Designee, Kayte... she's a doll! I appreciate her so much! We put together a list of all the things going on mentally with Jerry that I was able to print, then take to his appointment on May 28 with our doctor. That appointment was specifically to discuss his cognitive issues.

Doctor sent orders for the psycotropic medication doctor and the talk therapy doctor to get set up with Jerry. They're of course in Wichita, but they can do TeleHealth, so Jerry won't have to travel, which is a huge plus since those long bus rides to doctors don't help his chronic pain.

Jerry's lower left wound care continues. This current episode started the last week of September 2023, so we've been at it since then. The longest we've ever had it stay open has been three years... the shortest maybe three weeks. Since it's a permanent auto-immune dermatological condition, we never know how when it's going to do something. We've dealt with it since 1993. We married in 1995. Yes, I married him in spite of any health problems he had.

Jerry was my best-friend before we got married, and still is. Please pray for his comfort and for the medical things to ease on him. Jerry needs three surgeries (total left shoulder replacement, removal of the lead wires from his nuerostimulator since it no longer works, and removal of the battery pack in his left hip that goes with it). But he can't have any sureries until that leg wound heals completely.

It wasn't supposed to be this hard to take care of my husband.

God bless all of you!

Always,

Diana 🌻