Ball and Chain

I am feeling sorry for myself again. The dreams he had and the dreams we both had are no longer realistic. Multiple Sclerosis has changed our lives and our dreams. Those dreams are my ball and chain.

Hubby began composing, playing guitar and singing since he was sixteen years old. He was the lead in two bands. In 1969, they were excited about auditioning with a music executive in the Catskills. It was not meant to be. They were returning home from a gig and were about fifteen miles from home when a drunk driver (a doctor) hit them head-on. Hubby’s friend, Chris, died. Hubby was injured. The band dissolved after that. That doctor later died in prison. This happened one week before Woodstock. The surviving members decided to catch that “free concert” in Woodstock. They left notes for their parents since they were all sixteen years old at the time. They managed to drive half-way there when someone yelled out, “the New York Thru-way’s closed, Man”. They returned home, their parents none the wiser.

Over the years, Hubby continued to compose and play and even front a new band. He left for college in 1970, received his degree and eventually began working at Grumman. We dated briefly long distance in 1976, but he chose to marry the local girl. Months later, I met the man who would become my first husband and the father of my wonderful son.

My first husband died in 1992. I reconnected with my first love in 2009. Again, we were long distance. We would fly back and forth and video chat every day, twice a day. When I was sick, he serenaded me. We connected on a different level as older folks. He had finally settled down and I grew into myself. I became a stronger woman. Funny thing is, I was so angry over the death of Roger. I was angry for years. Hubby was angry over his marriage ending after so many years together. Once we reconnected, I was so happy! He told me one day that his kids said he was a little less angry. I told him he was a LOT less angry. He laughed.

We went through Pop’s death and Hubby’s cancer together and long distance. Our relationship became that nice, warm blanket. We were so much in love (if we ever fell out of love), but felt as if we had always been together.

We married in 2016. In 2018, symptoms began which we initially blamed on age. A few months later, Doc asked him to walk for him. He then immediately set us up with an MS specialist and ordered a brain MRI. The lumbar puncture didn’t come until November 2020 due to Covid and a little denial. Just after Christmas 2020, MS was confirmed. In the span of two years he has gone from walking unaided to using a walking stick, rollator, manual wheelchair and now a power wheelchair. He can no longer transfer unassisted.

His hands have no fine touch and balancing food on a fork is difficult. Sometimes I need to cut his food for him. He cannot sit upright. I thank God he has his mind, though he sometimes has cog fog.

His method of composing was to play a tune on the guitar, with the lyrics coming later. It seems he has a few songs in his head, but we have not yet figured out how to adapt so he can compose. Writing things down is another painful issue.

I know I need to let go of the dreams we had just four years ago. We need to discover new dreams. Life has changed on a dime. It’s not fair to either of us, but I need to let go of what I believed our life together should have been. Until I do, that ball and chain will just drag me down and make us both miserable. I love him so much.

Here’s to better days, but Multiple Sclerosis is still evil.

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Another Angel Takes Flight

Tonight Heaven gained another angel. My cousin Linda passed away at the age of 69 years and twelve days due to cancer. She fought long and hard without complaint.

She was a woman of great faith and I will miss her so much even though I had not seen her in more than ten years.

The cousins met up every summer when we were much younger. The Dads would drive halfway between Pennsylvania and Virginia. The Virginia kids spent two weeks in PA and we would meet again at the same spot so the PA kids could spend two weeks in VA. It was such a special time to be a kid.

I loved the time in PA because it was country living and so different from my hometown. I saw cows, skunks and chickens. Linda’s younger sister would sometimes jump a fence to cross a pasture. Twice she was chased by the owner’s bull.

There are so many memories. As a teen, she dated the man who would become her husband. They dated on the sly. We all piled in the car as teens to go to the ice cream shop. Suddenly we had to duck down. Yep. Our parents had decided to visit the same ice cream shop. We got away with it. Linda married her sweetheart. He passed away in January.

She grew up to become an RN. She was always helping others. She was a caregiver for her Dad and also for her husband.

The cancer returned and spread. She made it to the cousin reunion in June. I was unable to attend. I wish I could have gone. She did not complain about pain. She just wanted to be treated normally. She entered the hospice recently. Her caregivers apparently were amazing.

I will miss her terribly. Her faith was incredible. She is now cancer free, pain free and with her family who preceded her. God took her home and some day the rest of us will join her.

I am thankful for the love and the memories. Rest in peace, Linda.

Ladies get your mammograms.

Call Me Grumpy

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.

Too Much Scary Information

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:

0No disability.
1Minimal symptoms impacting one functional system, but no disability.
1.5Minimal symptoms impacting more than one function system, but no disability.
2Minimal disability symptoms in at least one functional system.
2.5Mild disability symptoms in one functional system or minimal disability in two functional systems.
3Moderate disability symptoms in one functional system, or mild disability in three or four functional systems. No difficulty walking.
3.5Moderate disability in one functional system and more than minimal disability in several others. No difficulty walking.
4Significant 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).
4.5Significant 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).
5Disability 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).
5.5Disability 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).
6Need a walking aid but can walk 100 meters (328 feet) without resting.
6.5Needs two walking aids but can walk 20 meters (66 feet) without resting.
7Uses 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.
7.5Might need help transferring in and out of the wheelchair. Might require a motorized wheelchair. Unable to walk more than a few steps.
8Needs assistance to use a wheelchair. Still able to use arms and perform some self-care.
8.5Restricted to bed for most of the day. Still has some use of arms for self-care.
9Unable to leave bed. Able to communicate and eat.
9.5Unable to leave bed. Completely dependent and unable to communicate. Cannot eat or swallow independently.
10Death 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.

Being Thankful in the Midst of Uncertainty

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.

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.