My Day Off

I’m retired with a lot going on. Today is my “day off”.

I got up, washed the previous day’s dishes and then took a moment to catch up on computer stuff. I heard Hubby stir. He put on his shirt and rolled into the kitchen. I made his coffee and poured some juice. He can no longer do it on his own.

After I got him dressed the rest of the way and he got into his recliner from the wheelchair, I finally was able to get my shower and take advantage of self care time.

I then made breakfast. I began cleaning our bedroom, folded two baskets of clothes and vacuumed the entire house. There are more cardboard boxes to break down and take outside, but that’s another day.

I still have a few more things to be done for the bathroom before it’s complete and will try to get the house back in pre-reno order, but today’s my day off.

My SIL is doing the pre-op eye drops for her Mom today. I will take over tomorrow since her Hubby has PT an hour away. My other SIL will take over beginning Tuesday afternoon with the eye drops and eye patch after Mama G’s eye surgery. She lives a bit away and can stay until Friday afternoon.

I know I signed up for the cataract surgery duties but didn’t realize it was this involved, but her eyes are really bad and I love her. I’m so glad my SILs can help out. Both still work and all of our husbands are less than healthy.

This is my day off. I am cooking a whole chicken and it smells great.

Hubby will go to bed around 9pm with my help. I’ll stay up until 11 to watch mindless tv and then go to bed.

I’ll do some driving tomorrow since the eye drops are 3x a day and I’ll get her to her outpatient surgical appointment on Tuesday. She’s about 8 miles from here. My car knows the way.

So glad I had a day off. “Day off” just has a different meaning these days. I’ll sleep well. I’m not complaining at all. I just realized what I did today and it seems so much more than what I actually did.

Carry on, dear ones!

Gonna Scream

Good news is that the bathroom is mostly done. We need grab bars mounted and a heavier shower curtain. After that, I can attempt to put the house back in order.

This disease is evil. My sister visited for a few days. We had a good time. Hubby did what he did when I was gone for a few days last summer. He adapted his routine so he appeared to require less help. The past two days he’s made up for lost time. I’m tired. I love him but I’m so very tired.

He has a specific wheelchair for toileting and showering. It’s too tall for him so we need to use the stepstool in order for him to scoot all the way back into the chair. It’s a lot of bending for an old gal but he’s now good for today.

He is confined by four walls for the winter so he thinks too much and it adds to my list. I don’t ask for much but I’d like to shower, wake up and then begin my day. Some days that’s a challenge. His hands have no feeling, he’s in pain or he’s weak.

Next week, his Mom will have her first cataract surgery. I may have some help with that from her daughter and granddaughter. I don’t mind doing it at all.

I already miss my sister. She’s safely home now. It was a blessing having her here.

One Day at a Time

About a week ago, I had a meltdown. A water leak triggered it. I’ve learned recently that forgetting words is a symptom of caregiver stress, anxiety and depression. I have medication now.

Hubby had a rough day yesterday. The temperature was higher so he was very weak. The barometric pressure changed with the incoming storm.

Last night he didn’t get enough of himself on the bed and slid to the floor. He crawled to where he had more space but we determined we needed help to get him into the bed safely. I called 911 for a lift assist. A very tall officer arrived and another shorter one followed soon thereafter.

They got him into bed. I thanked them. Hubby suggested we move the bed soon to allow him more room in case this occurs again. He’s fine today. Thank God.

Another blessing is we should have a new bathroom before Christmas. It could be sooner. Hubby saw the samples today and finalized other details.

I need to breathe and take one day at a time. Multiple Sclerosis is horrible. Caregiver burnout is real. Reach out whether you are the patient or the caregiver. It’s important and you matter.

Mixed Bag

Oy!

Hubby is improving. It’s been nearly four months since his first infusion. The tingling in his arms has reduced and is now from the wrist to fingertips. Next infusion is just before Thanksgiving.

I had my caregiver break courtesy of my step kids. I had six days home to see family after three years. I rested one day while I was there.

I have requested medication for the stress from Doc. Yesterday I had severe anxiety. I just don’t fully relax even though he’s doing well.

We’re getting estimates for an accessible bathroom so Hubby can roll right in. We also need new windows. Most of the decisions will be on me for the bathroom. I’ll have a 30 mile drive to their showroom and I’ll take pictures so we can make most decisions together.

This girl is overwhelmed. Being an MS caregiver is tough enough without any extras on my mind.

One day at a time. Adjust. Adapt. Breathe.

A Bit of Hope

Hubby had a neurology appointment today. His last “visit” was the video call which did not come through clearly. Since that call, he has had the lumbar puncture, diagnosis of MS and his first infusion.

Today, Hubby explained how he’s been feeling since the infusion. We had a list this time. He now has a prescription that should help with the spasticity; what we refer to as rigor. He should be able to sleep better at night and the muscles that are strained so badly when he rigors will have a chance to heal.

He could not lift his bad leg, but Doc could see the muscle trying to work. Doc was very encouraged. Hubby is on track this early into treatment and he seemed excited how much better he’ll feel after the second infusion near Thanksgiving.

Hubby is tired now. The weather heated up in the afternoon, but he felt good. Doc told him to keep his positive attitude. He’ll see us again after the next infusion.

This has been a huge load off our shoulders. We realize there are no guarantees. We’ve had a rough week. Doc had a twinkle in his eye that made us feel we’re on the right track.

An added bonus came from my stepkids and daughter-in-law. They took turns caring for Hubby while I flew home to finally see my family for the first time in three years. Mom just turned 89 a few days before. My son’s birthday is next month. Two siblings were diagnosed with cancer during that time and are fine now. My youngest sister and her family I had not seen in four years. I left a document for the kids here so they knew what to expect. They did well. I think Hubby missed his usual routine. I may not have rested while I was away but I saw my family and that was such a blessing.

Here’s to a bit of hope.

Maybe a Personal Break

My stepdaughter and daughter-in-law are both involved in education so they have most of the summer off.

They have offered to spend three days each with Hubby so I can go home and see my family and get a much needed rest. God bless them. If it comes to fruition, I have begun a document that I can email to them on what is involved in his care. I warned them that they may see and do things that are not what they may have envisioned.

It’s MS. You don’t really know what’s involved until you experience it, either as the patient or the caregiver. We have our routines. He tries to do small things since he is in the wheelchair now. It helps. Having a lift chair also helps us both. He has more freedom and I’m not trying to get him upright from the couch which put a strain on both our bodies.

I’m choosing to drive down rather than fly. It’s 90 minutes to the airport anyway and the more frugal flights are super early or super late. I would then need a ride from the airport back home. If I am able to spend four full days there before coming back, that’s a blessing. I have not seen my family in three years. I’ve not been away from Hubby longer than three hours in two years. He has been in the wheelchair for one year.

Hubby has had his first two infusions. The next one is close to Thanksgiving. The schedule worked out that we avoid snow days. He thinks he’s having some improvement in his hands and feels well over all. The heat and humidity will drain him very quickly. He now has a cooling vest courtesy of MSAA and Polar Products. It even helps his brain fog on those days. Most days are good.

I am less afraid to leave him now than I was last week. I know if I’m able to go the time will fly by and it will probably be tiring, but Mom’s going to be 89 years old soon. Two siblings have dealt with early cancer. I have not seen my youngest sister and her family in four years. I need this. I have been encouraged to do it. I know I need the break. Caregivers can suffer burnout and depression. Depression is fleeting. I’ve seen three specialists in the past year. The last one is for my ear infection.

It’s time for a short break. Hubby is stable as long as he doesn’t get too hot. He knows to get at least eight hours of sleep each night and take naps as needed.

We’ll both be fine. It’s just difficult to leave even if it’s less than a week.

Whining

It’s cold and raining. Hubby has had “issues” since yesterday. It does not help matters that I’m in pain.

About two weeks ago while riding the lawn tractor, I had a sudden pain along my left little finger that also appeared in my left thumb. It’s remained in the thumb and thumb pad. I have an appointment Wednesday morning with Orthopedics. I could have had an appointment a week sooner but the location is nearly 90 minutes away and I am not familiar with that area. I would also be leaving Hubby alone way too long.

I’m hoping this only involves an injection. You would think that not having the use of a thumb would not be a big deal. Turns out it really is a big deal. It hurts to just get dressed.

This is also the day of the memorial service for my favorite uncle who died just over a year ago at 92. I just cannot leave home overnight. It is out of state. I cannot visit my family either. There is just no one to stay with Hubby and that long of a drive (and no wheelchair ramps) is not a good idea if he comes along.

I miss my family so very much.

I also found out today that my former co-worker lost her son to suicide two weeks ago. It broke my heart. She and I would always joke around at work. If a call came for her department, I just yelled it out since she was right behind me. She’d always say “we’re not here”. I always replied, “I know that trick!” God be with her. I just cannot imagine what she’s going through.

I’m sure things will improve when I’m in less pain and when the weather improves. It looks like I have a few more branches to drag away after last night’s storm. It just never seems to end. I may take my stepdaughter up on her offer of a little break late next month when she’s off work for the summer. A couple of hours off might help.

Still Waiting But Closer

We finally have the cardiac clearance. It was a huge run around for us and a bit irritating, but it’s now done. Either neuro just received it or it was misplaced in their office. We were assured a week ago that the clearance would be faxed that day to them.

We now await a call from neuro to schedule the first treatment date. He is still in a wheelchair but we’ve adapted to make things easier on us both. We bought a power lift chair with massage and heat online. I put it together. He can now be more upright in order to transition to the wheelchair. His back pain is much less.

He now goes on the deck without assistance. He can reach the bucket of birdseed in case the chickadees come over to his hand. There are activities of daily living that still require assistance. He cannot fix himself a meal and I help him into bed. For now, things are a bit easier. The heat and humidity is wearing him out today.

I received a jury summons today. Yes, I freaked out. There is no one to stay with him if I’m gone that long. It’s for the entire county (80 miles across). The closest court is 20 miles. The other court is more than an hour’s drive and I do not know that area at all. I emailed the court regarding this and they excused me from service without having to have a doctor’s note. I suppose they have a record of his handicapped status. I’m relieved but I’m hanging on to that email just in case.

Yet again, we wait. His PCP is not happy about the wait. He said it’s been three years since he first suspected MS and we’re just now closing in on treatment. The pandemic and search for a vaccine delayed us quite a bit. I pray the treatment halts progression and perhaps reverses some of the damage. It’s again a wait and see situation, but we’re closer…much closer.

Want to Cry

I am stressed. Actually, stressed more than usual. I don’t know why.

My mail order medication won’t be filled until May 1. That allows less than a week for delivery. This is not a medication I can go without.

The least little thing goes wrong and I overreact. I am constantly on high alert. Hubby is actually doing fairly well at the moment. We hope and pray his repeat test next week is the last of the pre-infusion tests and he can finally begin treatment.

Hubby’s son and a friend installed a wheelchair ramp which was donated by a widow they know. She wanted it to go to someone who would be blessed by it. Her husband barely used it. It is already a blessing and will help getting to the car so much easier. I will not have to worry about it being too steep and I will not have to worry about backing a wheelchair down. I can walk facing forward.

Perhaps part of the problem is that Hubby has issues at night. He cannot roll from side to side easily. He has spasticity in his legs and it is very painful. If he does not sleep well, I do not sleep well despite what our watches show. Mine shows deep and light sleep throughout the night and his shows a minimum of three awakenings.

Maybe infusion therapy will begin sometime in May. I had hoped it would begin next week but alas the repeat test.

I will see my PCP on Star Wars Day and may ask about something for anxiety. He ordered something in the fall of 2019 and I have used three since I had that prescription filled. I would imagine they are no longer worth taking.

This too shall pass but I do not want to fall into dark thoughts. I feel overwhelmed emotionally. I feel normal when I am able to work in the yard. It is very windy today and cold. Tomorrow will be much warmer and nearly cloudless. I’ll clear more debris.

We both need a medical break. That’s unlikely unless the infusion is a miracle drug. MS is an evil illness and changes day to day. He has his issues but cognitively he’s fine. That’s something for which to be grateful.

Finally Warm!

It is finally a beautiful spring day. I have less than two weeks to get the yard debris (we have an acre) to the side of the road. Yesterday I managed to get three tractor wagon loads out. I have 5-6 more to do. After last year’s pick-up, I moved leftover debris nearer the front yard. Genius.

I was going to work on more piles today after I got back from town but Hubby wanted me to check on the tractor to see if it would run. Hubby is in a wheelchair. The shed is nearly 50 yards away. Since the tractor did not start, I wheeled him down the ramp which is too short. I bet most of you can guess that a standard wheelchair does not like to go through grass. I found a large piece of cardboard. Every time he got stuck, I moved the cardboard until he was finally by the tractor. He has not been in the back yard other than the deck for nearly two years. He was diagnosing the tractor. After an hour he figured it was the battery. Duh. He then looked across the yard, staring. He was able to watch our birds from a different vantage point and from a shaded area. We then got him back to the house. Let me tell you, I would have no problem passing a cardiac stress test.

I drove out to buy a new battery and I installed it. She hesitated and then started up! I don’t need to mow yet, but she’s ready. I inflated the back tires, checked the oil and added gasoline. I will be using my chainsaw tomorrow to cut up some of the debris and get it moved. I have a jumanji in the back corner with briars. It always catches me when I mow so I’m taking the chainsaw to that as well and I’ll then spray the remaining briars.

There’s always plenty of debris and overgrowth here but this is my therapy. I know Hubby would rather I not cry in front of him. It upsets him that his MS stresses me out. I can cry on a tractor for two hours if I need to.

We should be getting a call from neurology within the next several weeks with the first appointment for his infusion. We’re praying it reverses his progression and that he’ll have function in his hands, left leg and reduced pain and spasticity.

I have my hopes up but I realize nothing may change in how his body works. His mind is intact which is not the case with a lot of patients his age. For that, I am thankful.

Tomorrow I’ll be fully vaccinated. Saturday he will be fully vaccinated. He wants me to buy a cake or donuts. He wants to dance. I think we can manage something with the wheelchair so we can dance.

I miss dancing with my husband. I miss his cooking. I miss going to parades or enjoying the beach scenes. We may never experience that “normal” again. We may find a new “normal”. We may get him a more versatile wheelchair.

My stepson is picking up a wheelchair ramp from a lady who no longer needs it. He will drop it by on Saturday and he and his friend will come back another day to install it. A proper ramp will be wonderful.

Things are beginning to come together. I pray the infusions help. We need a cure for Multiple Sclerosis.