Stable Footing

I reached the point where I’d cry for no reason. I was being curt with Hubby. I researched my symptoms and I realized it’s caregiver stress/burnout. I made an appointment with the PA. I am now on medication that levels serotonin without making me feel drugged. I also speak with a social worker every two weeks. It has been a huge help. Hubby loves having me back.

I’m so glad I didn’t delay any longer in getting help for myself.

Hubby is now more stable after eliminating a vitamin and one medication. His Mom is seeing better and is done with post surgical eye drops.

Spring is approaching and I can work outside.

Please do not hesitate to ask for help whether you’re a caregiver or struggling in general. We’re worth self care!

God bless!

Feeling Lost

I’m exhausted. I realize I say that way too often.

Hubby notices the exhaustion. He worries. It’s not depression. Not yet.

Tomorrow I’ll have two patients for a short time until his Mom can regain her sight and safely return home. My sister-in-law and I take turns. Both our husbands are disabled.

Toileting and the neverending cleanup is the new thing. He no longer feels safe transferring into our car so we have to work around transportation. Getting DME is hopeless unless we drive 75 miles one way. Oh yeah… transportation issues.

What is his life expectancy at this point? He’s been in a wheelchair for more than a year. He was diagnosed at age 68 just over a year ago.

I’m scared. I don’t want to lose him. He’s my first love. We met in 1976 and reconnected in 2009. At this point we’ve been married less than six years.

Yep. I’m exhausted and scared.

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.

Happy Anniversary to Us!!

Today is our fifth wedding anniversary. Half of our marriage has been trying to figure out what is wrong with Hubby. It’s Multiple Sclerosis.

Our plan was to go out for breakfast today. It was a bold step. We used to go out for breakfast on Sundays at the Diner which is an historic building and not accessible. We decided on the deli across the street from there where Hubby used to stop for coffee before work. I had remembered a ramp. Turns out the little ramp was on the inside of the building. A lady checked the front of the deli for us and said it was wheelchair friendly.

I ordered for us and we chose to eat outdoors. There was a slight breeze, the temperature was lovely and the food was delicious.

This was a huge step for us. Hubby has been homebound for so long except for doctor visits that he was almost afraid to go anywhere. We even checked out the Old Barn by church where they are holding services for June. He’s strongly considering going Sunday even though showing up in a wheelchair bothers him. This is huge. Our lovely day continued as he guided me to fix some things for my garden. He’s now sleeping.

He’s had his first complete infusion. Results are noticeable after 3 months to a year. He is able to flex his left foot. It is easier to stand despite the heat. He has noticed subtle changes in how his hands feel. If his hands come back, he can play guitar. If he can stand, he will have more freedom in and out of the house.

After this very good day, I am hopeful and so is he. Happy fifth anniversary to us!!

Signs of Hope?

Hubby has now had his first infusion. The first one consists of two parts, two weeks apart. He had a reaction during day one but it was quickly cleared with Benadryl. He began with Benadryl for the second part and had no issues. The infusion center which was not available for his first visit due to the elevator being out of order, does not allow for visitors. He had no privacy curtain and the restroom was not wheelchair friendly. I had to sit down the hall. I was able to get him some lunch and they called me back when he needed the restroom. From leaving home to returning home, it was more than six hours.

The infusion process includes an injection of a steroid. He was tired when we returned home but was feeling stronger the next day. He could stand easier and his hands felt better. His energy level has been better also in the past five days. The next infusion is in the fall. The schedule follows a pattern that should keep us out of snow days. It is an hour long drive. We drive home just ahead of rush-hour traffic.

We’re a little more encouraged. He should go into a remission in three months and should have noticeable improvement in six months to a year. I hope it takes the spasticity away. It used to happen after bedtime but now happens during the day as well.

I suppose it may be wise to put off buying a wheelchair accessible vehicle for a while. It’s a guessing game when it comes to getting equipment. Will he improve to where he does not need it or will he remain the same or progress despite treatment?

It stresses me out. I have no one to give me a break. I leave for no more than two hours or so. He can sometimes make himself a cup of coffee but he can’t fix himself something to eat. He needs help with other things and really should not be left alone. Sometimes he forgets to lock one wheel of the wheelchair. Sometimes he has brain fog.

I miss doing things together. I miss my family. Friday will be our fifth anniversary. I love him so much. Sometimes I fear I’ll bury another love of my life. In the meantime, we adjust and adapt and sometimes I cry just to let go of some of the pressure.