We are into December already. Can’t believe time is going by so fast.

I had another terror this week but it was only about five seconds long. Someone was in our bed with his hand over my mouth and said, “Don’t scream”. I tried to scream, but it only eked out. Hubby woke me up from it. That’s the first terror in about two months.

I went downstairs last month and found water on the cellar floor in the laundry room. To shorten this just a bit, I called a plumber. He fixed the leak downstairs, but heard more water. He came upstairs and checked the bathroom in one area, but the leak was, of course, behind the tile in our new handicap bathroom. He suggested we call our contractor to remove the tile.

This is where an unexpected blessing occurred. The tile was removed and the pipes replaced with material that will not leak.

Our contractor advised us to call our insurance company after he went downstairs and found black mold…seriously bad black mold. Insurance is covering the cost of removing all the damaged items downstairs, mediating the mold, etc.

We have a blank canvas now except for the storage room. Our contractor returns this week to fix the shower and then they will concentrate on the cellar. I hope to have a lady lair down there so I can read and relax.

I did find information on an incline platform lift that may work for Hubby’s chair and get him downstairs…or an elevator, but that involves structural work. It also involves winning the lottery since the platform lift would be around $10,000.

I still have so much to do. The tree and ornaments need to come upstairs so the guys can work undisturbed down there next week.

My break is now over. I’ll get some water and then begin wrapping again. This year should be fun. We have a lighthearted theme this year.

I’ll call Ortho tomorrow about getting another injection in my shoulder so I can function.

Hubby is somewhat stable. We’re joking around again. It’s been a long time. He is worried that he’s losing more function in his right leg. He’s now 72 years old.

I haven’t had a break from full time caregiving since the first week of August 2021. At that time, Hubby could transfer to a manual wheelchair with help. He could roll on the bed himself. He could even make a cup of coffee without assistance.

Fast forward to 2024. He is wheelchair bound. He can wiggle his toes. He can use his hands, but has no sensation at all. He cannot tell what he touches.

It is all on me. It is all the housework, all the yard, all repairs within my skill set…everything.

I was broken yesterday because there is yet another leak in the cellar. It appears to be from the bathroom or fridge, but no water upstairs. It is all downstairs. I just can’t. I’m done.

We finally got the tractor repaired and the grass cut. He still has a health issue going on but refuses to make a doctor’s appointment.

I love him so much, but my brain is done.

I was invited to submit a victim’s impact statement against our “suspect”. Our case has not yet been heard, but he pleaded down to a third degree felony burglary in another case and was sentenced to 1-3 years. Due to time served, he was eligible for release in September. He has not been in prison custody long enough to have the early release interview. He is upstate now.

I am in such need of a break and I do not know how that is possible. He is completely dependent on someone taking care of nearly every single need.

I am exhausted. I am probably in a depression but not too bad. I will keep an eye on it.

This is not fair to either of us. He feels he is dying, but not necessarily in the near future. He has his mind. We love each other so much.

I am just in need of a break.

It just seems to be one thing after another and I just want to cry.

Mom had a mini-stroke last month and surgery to open up the artery. Was I there? No. Today she fell in the yard and may have wrenched her knee. Was I there? No.

I’m stuck right here, 500 miles away, because we can drive down there but have no way of getting Hubby in the house with the power wheelchair.

I haven’t had a break in 18 months. I was last home in August 2021. I have no one to help. Hubby is at the point where he can no longer transfer by himself. If his kids help, they will have to see him naked and vulnerable. He needs help with toileting. Feeding himself is becoming more difficult.

Every morning is the same. I get up and bring him his morning medication. I clean him up. Dressing him takes 30-45 minutes now. I then position him so he can be transferred to his power wheelchair. “Normal” is next when I fix coffee and his juice. At this point, I can relax a little until it is time to cook. He does better during the day and I put him to bed around 10 p.m. I take another hour or two to unwind. With a lot of luck, I can sleep until morning unless he has a bad night and has to awaken me 3-6 times.

It is so tiring. I need a good cry. Now that spring is nearly here, I can work in the yard and cry outdoors if I need to.

Mom is 90. How much longer will I have her on earth? Hubby is 70 and has progressive MS. How much longer will I have him? I’m scared and I’m tired.

It’s now been more than three weeks since I was attacked by Hubby’s transfer board. I’m about done with the boot. It’s heavy. It’s uncomfortable.

The first x-ray showed an avulsion fracture of my right foot. The orthopedist said the second x-rays (two weeks later) showed no signs of a healing fracture. I just had an MRI. The first appointment (per staff it’s supposed to be within three days) after MRI is not until October 4th. I am not willing to drive an hour by myself to an area I barely know. The other choice was even farther out and I have never been there. The closest office is a 30 minute drive. Yes, I have a GPS. Imagine having to drive without the boot for an hour or just over an hour while operating an accelerator and a brake in heavy traffic. Wow, that would help me so much, would it not?

So, I’m grumpy. I am trying to do all the caregiver activities, take care of the house as best I can and cook. I want to nap constantly.

Luckily, Hubby is in a fairly good place right now and somewhat stable. I switched up the bed this morning so our heads will be at the bottom of the bed. This should make things easier for him to get off his left side and perhaps make getting in and out of bed easier. He cannot do that alone, of course.

I suppose I should end this and begin dinner. This boot will be history before long. I have had it on since about 8 this morning. It’s now 5 p.m.

Perhaps my results will become available online before the end of the weekend. In the meantime, I am grumpy and tired and in a lot of discomfort.

That is all. Carry on.

I try not to Google too much, but tonight I was curious about Hubby’s MS progression. He was diagnosed at age 68 and will be 70 in the fall. Here’s the disability chart I found on Healthline:

According to Healthline:

0	No disability.
1	Minimal symptoms impacting one functional system, but no disability.
1.5	Minimal symptoms impacting more than one function system, but no disability.
2	Minimal disability symptoms in at least one functional system.
2.5	Mild disability symptoms in one functional system or minimal disability in two functional systems.
3	Moderate disability symptoms in one functional system, or mild disability in three or four functional systems. No difficulty walking.
3.5	Moderate disability in one functional system and more than minimal disability in several others. No difficulty walking.
4	Significant disability but able to perform self-care activities and live independently. Able to walk without assistance or rest for at least 500 meters (1,640 feet).
4.5	Significant disability and some limits to the ability to perform daily tasks. Still able to work and independently do most activities. Able to walk without assistance or rest for at least 300 meters (984 feet).
5	Disability is significant enough that daily activities are impacted. Might need assistance to work or perform self-care. Able to walk with assistance or aid for at least 200 meters (656 feet).
5.5	Disability is significant enough that self-care and other daily activities might not be possible. Able to walk without assistance or rest for at least 100 meters (328 feet).
6	Need a walking aid but can walk 100 meters (328 feet) without resting.
6.5	Needs two walking aids but can walk 20 meters (66 feet) without resting.
7	Uses wheelchair exclusively but able to transfer self in and out of the wheelchair. Able to use a wheelchair independently. No longer able to walk more than 5 meters (16 feet) even with aid.
7.5	Might need help transferring in and out of the wheelchair. Might require a motorized wheelchair. Unable to walk more than a few steps.
8	Needs assistance to use a wheelchair. Still able to use arms and perform some self-care.
8.5	Restricted to bed for most of the day. Still has some use of arms for self-care.
9	Unable to leave bed. Able to communicate and eat.
9.5	Unable to leave bed. Completely dependent and unable to communicate. Cannot eat or swallow independently.
10	Death from MS.

According to this chart and my untrained brain, He’s now at an 8. He has his upper body to maneuver, eat (sometimes with assistance), comb his hair and brush his teeth.

Needless to say, this scares the crap out of me. I preach that it’s one day at a time and to breathe, but this is difficult to do. In bed, he feels paralyzed because he can’t roll from side to side or move his legs and feet. It’s a scary thing for us both. He has brain fog if he stays up too late or becomes overheated.

My first husband died suddenly just before his 41st birthday. I met current Hubby in 1976 before I met my first husband. In 2009, we reconnected (still long-distance). MS invaded our lives officially in December 2020. His symptoms began in 2018. I love him more than I can express. This is difficult.

I try to keep his dignity intact as much as is possible. He’s always been Mr. Fix-it, independent and very proud. He is also a very kind soul. If he is in the wrong, he will apologize. He thanks me for helping him. He compliments my cooking. For people who know me, that is HUGE! I used to rock the microwave. Now I actually cook. I suppose I only needed to retire and become a full time caregiver for that to happen.

We are approaching our expiration dates at this point. We’re retired and I am only two years younger. I am scared. I like information because I want to prepare myself mentally. Should he progress further, bed bound will be next. I cannot allow myself to go there. The Ocrevus is supposed to delay or stop progression. In January of this year, he transferred himself to the manual wheelchair and met me in the kitchen and sometimes made his own coffee…January of this year.

Please, Lord. Help me.

Hubby and I were married in 2016, 40 years after we first met. He was my first love, but long distance dating was very challenging without internet and free long distance. We relied on the occasional call and letters. It ended after six months.

In late 2018 he began experiencing symptoms that could have easily been passed off as “old age”. He had knee pain and back pain. We had cleaned three sheds at his Mom’s house, cleaned our shed and he fixed the lawn tractor. His doctor could not find a reason for the back pain which was his main complaint. He doesn’t complain about pain often. Doc knew this. Doc had a light bulb moment and asked Hubby to walk for him. He was dragging his left foot. Doc immediately ordered a brain MRI and a consult with an MS neurologist. This began our MS journey.

He’s progressed from using a cane to using a wheeled walker, then a manual wheelchair (borrowed) to now a power wheelchair which gets him most places he needs to go. We recently bought a 2008 wheelchair van to get him to appointments and out into the real world for the pure joy of getting out of the house. We’ve been to a parade, his Mom’s house, church with breakfast out afterward and just tooling around.

My first husband died just before his 41st birthday. Our son was 11 years old. I vowed to never date again. After 17 years, my son mentioned Facebook. I didn’t even know what it was. I joined and eventually came across Hubby. We again dated long distance and I flew up a few months later to see if this was real or merely fond memories. It was real. As he took me to the airport, he had tears in his eyes and said, “I love you. I do.” I cried most of the flight home.

We have now been married six years. MS throws us a curve ball some days. The heat makes things worse. He has brain fog nearly every single day. I thank God he has his mind. He’s somewhat stable and is doing well on his DMT. His neurologist was very pleased with his test results (no change in lesions) and that he has signals in his left leg (the one he’s unable to move). We’re thankful for what we have. Do I get grumpy? Yes. Does he? Oh, mercy, yes. Each day is a gift. We must remain mindful of that.

I say this as my Uncle John is seriously ill. He’s 86 and Mom’s youngest surviving brother. I live so far away. Traveling that far is something we’ve not yet tried.

One day at a time.