Blessed and In Love

Dealing with Hubby’s MS just 2 1/2 years into our marriage was unexpected. He progressed quickly. Now seven years into our marriage, he is wheelchair bound, has a difficult time controlling his hands to eat or drink and has difficulty sitting upright.

I fell in love with him in 1976. It was a long distance relationship. I found out several months later that he was dating a local girl. It broke my heart.

He married her in May 1977. I married my first husband also in May 1977. We have a wonderful son. Current Hubby has two wonderful kids and four grandkids.

We’re dealing with so much right now with the home invasion and trying to get him equipment to help us both. I have just suspended physical therapy. The new equipment for Hubby should help my shoulder to heal. It will take the strain of transferring him off us both.

We normally awaken each morning with a song in our brains. It’s a fun way to begin the day.

He told me this morning again just how much he loves me. He did not choose me in 1976, although he said this morning that I was the complete package.

That meant so much. I was very naive back then and he was still a little wild, but I did love him. I regret trashing his love letters, but I kept one cassette of his music.

Don’t get me wrong. I loved my first husband intensely. He died before his 41st birthday…just 4 days before, and 8 weeks before our 15th anniversary. We have a wonderful, wonderful son. He is funny, highly intelligent and has a great love for his family.

Hubby depends on me for so much and sometimes I put limits on what we can and cannot do. He found some things we can investigate through the local library. There are a few excursions that sound like a lot of fun, so we may go ahead and sign up for them. We still have a gift card for lunch at a local seafood restaurant.

I really am blessed. I have had two great loves as far as marriage goes. I am blessed with a wonderful family. I miss them.

I am thankful that Hubby speaks his mind because it is so easy to slip into caregiver mode and forget that I am a person with feelings and not a robot. He reminds me that I am greatly loved and appreciated. His Mom thanks me for what I do for her baby boy.

It is so easy to complain about the unfairness of Multiple Sclerosis, but I am reminded of a meme I once saw: Bloom where you are planted.

I am thankful and blessed.

Violated

A few mornings ago and before daylight, I felt my knee being touched/caressed. It couldn’t be my husband since he cannot roll from side to side.

I looked over the edge of my side of the bed to see a 20-something young man lying on the floor. He put his finger to his lips to imply “shhh”. I began screaming there was somebody in our room. Hubby thought I was dreaming. I kept screaming. I then got really angry and said “Get out of our house!!” That’s when Hubby realized it was real and he yelled also. He saw a crouched shadow leaving our room and heard the hall floor creak.

The creep hunched over as he got out of our room. I got out of bed and attempted to follow him, turning on lights as I went.

As I turned on the kitchen light, I saw he was on the deck, walking slowly away. I slammed the back door shut and called 911 and reported what happened and what he was wearing.

The lights in the house remained on and the stove was pushed in front of the back door. In 40 years, the back door has not had a lock. It does now.

There has been no update in the investigation in two days. Friday night I wasn’t afraid until it was time to turn the lights out. I was terrified.

Yesterday, I was angry. We’ve ordered security products. Today, I want to cry.

This is a rural-ish small town. Crime of the day is normally drunk driving. This is not like the town I grew up in. We stop in traffic to allow mama duck and her babies to cross. Doors aren’t locked. Windows are left open.

I hate that I’m allowing that creep to destroy my sense of security.

We are already dealing with Hubby’s MS. We don’t need this crap.

Scared

The last several days have been a bit unnerving for me and I am trying so hard to stay calm. He does the same for me.

Last Friday, he fell asleep in his chair but it was time for his medication. It took FIVE minutes to awaken him while calling his name and shaking him.

Saturday morning, he experienced what is called sleep paralysis. He could move only his head and his hands. He was trying to remain calm. He kept telling me calmly not to panic. He said he’d either come out of it or he wouldn’t. He had peace either way.

Saturday night into Sunday morning, I had a total of three hours of sleep. He had two episodes this morning where he was stuck between being awake and asleep (hypnogogia). The second episode lasted more than 30 minutes. He kept talking about blocks and to move the Bible to another block. I finally got out the Bible and read random passages. It calmed him and he was finally himself.

I called his neurologist’s office this morning (I also called yesterday with no response). He has an appointment Thursday. I had to reschedule my PT appointment, but he needs to be seen. I don’t know if he’ll have an EEG or another brain MRI, but we need answers and I will have a list.

I am afraid I will lose him before long. I am not ready for that. I buried my first husband and years later we watched Pop go through hell before he was finally diagnosed and he passed away.

MS is evil. It has brought us even closer together despite the hardships. Not every family who deals with MS has it as “easy” as we do. Their loved ones suffer severe cognitive decline or physical/emotional abuse. Hubby is not that way at all and I am thankful.

I am scared.

Uncertainty in Our Journey

We, as a family, battle Multiple Sclerosis…primary progressive. It is evil.

Hubby can no longer walk. He cannot transfer independently. His hands sometimes fail him and I cut up his food for him. He is in pain every single day. If he complains, that is my cue that the pain is much worse in that moment.

I am in physical therapy now for my right shoulder. It is still painful after five weeks of therapy. Of course, not having a Hoyer lift, nor Home Health does not help my shoulder to heal. We have been trying to get the Hoyer since May 4 of this year. We’ve been trying to get Home Health since November 2022. Home Health is understaffed and those who take our insurance do not come this far east or they do not have the staff.

I feel some days as if I am watching him die a slow death. He has his mind. He can breathe and speak if he is reclined a little. I am at wit’s end. I am so tired of the constant calls to nudge someone into doing their jobs or at least follow up with us so we know what is or is not going on.

It has now been two years since I had a break. Mom will be 91 next week. I miss her, my sisters, my brother and my amazing son.

This is a 24 hour, 7 days a week labor of love. Most nights lately, he does not need to reposition so I can sleep with fewer interruptions. The morning routine is the most difficult. Getting him dressed and taking care of the urine collector is the main task. I eventually get him into his wheelchair. The morning process takes 30-45 minutes.

No, I do not qualify for being a paid caregiver. We do not qualify for Medicaid. If we did, our options would be much better. We will make an appointment with Social Security and see if he qualifies for SSDI. He retired early and was diagnosed with MS at 68. We’ll see. I no longer get my hopes up about anything.

Am I depressed? Maybe. I am on medication. I am calm, but sometimes I feel paralyzed and in denial. We try to get out together. I miss our life as it was just seven years ago when we married. It was fun. I had plans to visit family 2-3 times a year. Best laid plans of mice and men?

Pity party is over for now.

Sad

I asked Hubby if I could get him anything. He said, “I want my legs back. I’m as useless as a bag of potatoes.”

He’ll have a short outburst like this occasionally. He wants to go into his Mom’s house and figure out why her oil bill is so incredibly high. He wants to fix things around here. He wants to do normal things with me. I can’t help him. I hurts my heart.

I cannot imagine what he is going through. He continues to say how unfair this is to me. This is an incredibly evil disease. I know there are diseases out there that are far worse.

Our seventh anniversary falls on Father’s Day this year. The symptoms of MS began two and a half years into our marriage. He will be 71 this fall. I’ll be 69 also in the fall.

I will begin physical therapy Monday due to shoulder pain and decreased range of motion. I believe it is from constantly transferring Hubby from the bed to his power chair and the reverse at night.

I just want to cry. I cannot help him walk again, nor fix his hands. We have not so far been able to get Home Health or Home PT out to this area for him. Most Home Health agencies that accept our insurance will come within 25 miles, but no further east where we are. We are STILL trying to get a Hoyer lift.

This disease is difficult enough to manage without the added burden of being a little too far east for help. That should NOT be the case…ever!

Repeal Murphy’s Law

We’ve had a weird two weeks on top of Multiple Sclerosis.

My joy is getting on the tractor and mowing our acre. It relaxes me and gives me a huge sense of accomplishment.

Two weeks ago, I hit an old anchor that the power company left behind. It snapped the blade belt. I then had to learn (with Hubby’s verbal assistance) how to replace the belt. Apparently we didn’t do it correctly, but we now have new blades to put on and we can fix the old problem in the process.

On Mother’s Day, we were planning on going to church. The battery in the van was dead. I charged the battery and drove to NAPA. Two days later, the new battery was completely dead. I called NAPA. He was unable to come out to the house but called his Buddy…who happened to be our neighbor and also a member of the Fire Department. He jumped it and drove the van to NAPA for a new battery.

Next in our fun times came poison ivy. I swear I only have to hear the words and I break out. It began to spread and the itch was unbearable. I finally went to my PCP after nearly 10 days of this. I am now on steroids.

Just before seeing my PCP, I told Hubby that a valve was leaking in the cellar and we needed a plumber. The plumber by-passed our whole house filter so we’d at least have water, but that the well pump needed to be replaced. The next day, the pump quit. The new pump arrives tomorrow (holiday weekend). Imagine trying to cook, clean and take care of my paraplegic Hubby with no water. I bought bottled water to drink and 10 gallons of water for all else. I will refill those today. I hope to get a shower and some laundry done at the marina…and fill up the empty gallon containers with new water.

I am so tired. No break for 2 years. None. He is now requiring 24/7 care. It’s always something. Lately I feel more like a robot than a wife. My shoulder is messed up and my foot burns on occasion from where I dropped a transfer board on my foot last September. I will see Doc next week for that. I just need to get this itching taken care of.

I really hope Murphy is done messing with us for a very long time. Hubby misses my smile. He feels like a sack of potatoes. He cannot do much on his own. I have to roll him over in the middle of the night. He barely has use of his hands in order to use eating utensils. He cannot sit upright. He is confined to his power wheelchair during the day.

This is not what either of us had in mind. Our seventh anniversary is in about three weeks. We are retired. I am just plain tired.

Missing Pop

Around noon today will mark eleven years since my hero passed into the arms of Jesus, free from the horrible pain he experienced the last few months of his life.

Pop was the king of dad jokes. He loved his family. I’m not sure he ever really grew up. That mischievous boy was always there.

Our time together was normally working on cars. He taught me how to change the oil. That was really cool until I found out I could pay $20 and have the car vacuumed and the windows cleaned as well. I always had difficulty getting the oil filter off, so it was a win for me.

Pop named me and also gave me my nickname. I used to follow him around as a toddler, so he named me “Bug”. My first name is Anita. I was in fifth grade before I came across another girl with that same name. Mom said I was probably named after one of his old girlfriends. About a year before Pop died, I asked him why he named me that. I cannot remember the answer since Mom’s was so much funnier.

Pop was a proud Marine! He was tough. He was honorable and reliable. He worked hard all his life. We learned from watching our parents how to be reliable, honest adults. We also have weird humor and a little snark.

Pop fell in early 2012 and hit his head. The next day he became sick. A trip to the larger hospital in the area revealed a subdural hematoma. We thought it would be a short hospital stay and possibly surgery. His surgeon there asked about the bruising on his arms (which he had had for quite a while due to a blood thinner). The surgeon ordered a bone marrow aspiration. Pop had leukemia.

The next two months were difficult for him. He was in rehab or a hospital most of the time. He just wanted to go home. Mom brought him home. He watched black and white John Wayne movies on his HD television. Hospice was ordered. They were angels on earth.

He passed away surrounded by his family. My little sister was on her way back from the airport when she saw the sun peek through the clouds and pointing to the area of Pop’s house. She knew he was gone.

I miss Pop every day.

SPRING!!!!

It is nearly mid-April and spring seems to have finally arrived.

It was nice enough today for Hubby to get outside and watch me do spring clean-up. Every year, I have about two weeks to get all that yard debris (one acre) to the side of the road. Hubby’s old piles were years old. We nearly have a presentable yard now.

I have three piles of debris across the street. I also have a pile of logs on our side of the street free to anyone who wants to haul it off. That leaves three logs remaining for next year. Two of the remaining ones are practically mulch. I am tired. This leaves small sticks to cart across the street. I’ll blow the leaves toward the back yard and run over them with the mower.

I feel so accomplished! Better weather means I feel better.

Hubby got outside in his wheelchair for about an hour. It did him a world of good and we chatted as I worked on the logs. I love working in the yard. We have tiger lilies popping up. They should bloom in late summer. In the fall, I can take a few of them and plant them elsewhere on that hill out front. The deck is next and flowers!

Any major indoor cleaning can wait until we have rainy days.

I still miss my family and would love to see them, but until that can happen, Hubby is feeling well. We have a gift card to a local restaurant which has a ramp. We can tool around town. He can visit his Mom at her house….just outdoors unless we can buy another “portable” ramp.

I hate MS! I love and adore my husband! We’re in this fight together.

When Does It End?

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.

Today’s a Decent Day

Today is a decent day. I do have ear pain, foot pain and a headache; but still a decent day.

It now takes 30-45 minutes each morning to get Hubby dressed and into the kitchen for his coffee and juice. Physically, it is more challenging for me than before. Sometimes he can help move himself around and sometimes not.

I may try to wash his hair soon. He found a brush like his old one. The old one was about twenty years old and was in need of a partial denture. He is more comfortable during the day now. He spends time buying settings and gemstones so he can make jewelry. That is quite a feat for someone with little to no feeling in his fingers and hands.

I finally picked up my medications from the pharmacy. The doctor I saw yesterday did not call it in until later and I really did not want to drive another sixteen miles round trip after dark. I chose to drive out this morning and I picked up some great bagels and cream cheese on the way home.

The medication put me to sleep. This is my self care, other than Zoom, an occasional haircut and watching television after he goes to bed.

I am trying to become more organized. It is a process I may have to ease into. The kitchen looks much better. I will clean the spare room and empty it out of old clothes that can be donated. On the next nice day, I will load up trash that he had hidden in the weeds (old car parts) and take them to the dump. Spring is coming and I want it gone. I will only have two or three piles of yard debris this year, compared to about ten each of the past six years.

I need a break. My last one was 18 months ago. I miss my family so much. Multiple Sclerosis was not on our radar when we married in 2016. We are retired. The plan was to go sailing during the summer, attend free concerts and watch parades. The plan was also to visit family down south at least 2-3 times per year. Well, the best laid plans of mice and men, right?

It’s still a decent day. I will Zoom with family tonight and Hubby and I will have labs drawn tomorrow. The ear ache should be better by the end of the weekend.

Not too bad of a day today.