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.

Pity Party. Table for Two.

I thought we had agreed that we would not both be feeling sorry for ourselves on the same day. I guess one of us forgot.

I am overwhelmed. It takes 30-45 minutes to dress him now and transfer him to the power wheelchair. He cannot help me until he is sitting upright. He can put his shirt on once I get it over his head.

He cannot pick up a coin. There is very little fine touch in his hands and fingers. He has decided to make jewelry and set the stones in the setting. Well, he cannot do that. Guess who is now tasked with that? I’d rather jump out of a perfectly functioning airplane.

He is having a pity party because he is able to do less and less. He has trouble explaining how he wants something done in a language I understand. He knows what he wants done. He knows how he would do it. More words would help.

When it is a bad day, he holds my hand and tells me he loves me. He locks eyes and I can see very clearly how deep that love is. Ditto.

He needs to call his neurologist and remind him about Home Health. He needs PT and OT.

I have a lot I would like to get done. He can maneuver in the “office” now. The house is small. I need to clean our room again and also the spare room. The challenge is to find new homes for all the extra items.

I need to get my sedan fixed to either use it in place of the handi-van or just sell it. I would like to get an estimate to have junk in the cellar removed. It is astounding what has been squirreled away down there.

Mom is to have surgery next month. Can I get down there? No. There is no one to take care of him here and driving down together is fine, but he cannot get into either house. There are no ramps.

I am so blooming tired and I hate Multiple Sclerosis and what it does to our loved ones and those who take care of them.

2023, Really?

Three days into 2023. The good news is that I was able to have two nights of nearly eight hours of sleep each.

I suspect Hubby is experiencing the gap crap. This is a period of time up to a month before the next infusion. The symptoms worsen. He is in more pain. He cannot tell what he is touching because of the lack of sensation in his hands. His legs do not work.

I am 68 years old. He is 70 years old. I must physically bend his left leg up in order to roll him over in bed. Due to spasticity, the leg does not bend easily. I am going to order a transfer sheet so I have handles to pull him further onto the bed before adjusting his position to dress him and transfer him to his chair.

We noticed last night that his chair’s battery level was below 30%. The amber light was on which indicates 25-45% battery life remaining. Today, I have the privilege of removing the battery cover to see the exact battery type needed. There are two batteries. The owner’s manual is beyond useless. He has his infusion on Monday and the center a one hour drive each way. We do NOT need to go into manual mode to get in and out of the car and up our ramp.

I am feeling a bit defeated today. I am looking too far ahead rather than taking one day at a time. I worry about assisted living or a more skilled nursing home. We are expecting a call where someone will evaluate our needs, recommend PT and/or OT and teach me how to safely transfer him to a shower chair.

I am taking care of my own health. Doc removed one medication because my blood pressure was too low. I return later this month to follow up on that. I will make a list of things to address with him. Anxiety is still an issue. I am afraid I do not have the knowledge and/or skills to properly take care of him. I love him so much. I cannot mess this up. I am doing my best and I suppose that is all anyone, including me, can expect.

If you pray, please pray for us and also for all with chronic illnesses and the ones who care for their needs. Thank you!

Black Friday Indeed

We survived Thanksgiving. We were expecting my stepdaughter and her family but they came down with the flu and were hesitant to be around others.

We had bought a turkey, so I cooked that and some sides. My sister-in-law brought over slices of pie and some cookies later in the afternoon.

Today is bleak and raining. I am so tired. I feel it could be depression. I have not had a break since August 2021. I really have no one nearby who can help. I work from the time I get up until I go to bed. I stay up later than he does so I can have some “me time”.

I really try to keep the front of the house tidy. I try to wash the dishes, wipe down the table, etc. I get his urinals cleaned out and in a soak. Laundry is something I need to do today.

Doc said I’m still not drinking enough. I really am trying to take care of myself. I have had nearly constant headaches. I had them before I fainted on November 12 and I have several each week. Perhaps that is yet another symptom of caregiver stress. I’ll discuss all this with Doc at my next visit.

I just want to sleep. It’s been a few days since I’ve napped, but when I fall asleep I’m out for about two hours.

There is much to do to finish up Christmas gifts. I will begin wrapping the ones that need to be shipped to Mom’s house. I can then work on wrapping the gifts for those up here. Hubby and I just put our gifts in shopping bags. It’s easier on my back and easier for him to open.

I have 90 minutes before the alarm reminder for Hubby’s medicine sounds, so I will take a nap. I am so so tired.

My Heart is Tired

I have not had a break in more than a year now. I do not see that happening any time soon. My incredible stepchildren will not have time off until the summer and they would have to see their Dad naked.

I would love to see my family. We have a wheelchair van now, but my old house is not accessible. The hallways are very narrow and he would not be able to turn into the bedroom. My mother’s house has two sets of stairs. There is no ramp. I really do not know how we could get him into the house.

My uncle died recently. Now my cousin is dying. She’s eleven months older and her cancer has spread. She is at peace with it. Her faith is amazing. She was my first best friend since my first sister had not yet been born. She was a nurse. She married her great love and recently lost him.

Mom is now ninety years old. She’s healthy and my sister and son take care of her local needs. Her neighbor ran over during a bad storm when the power went out to make sure she was okay. I miss my family. I love them all. I see the ladies on Zoom once a week. My son has to get up very early for work, so he’s not always able to join us.

I am recovering from a foot injury. I dropped the transfer board on the top of my right foot. There were no fractures, but I have bursitis, arthritis and a bone bruise. I was allowed to discontinue wearing the boot!

My morning begins by setting things up for Hubby. When he awakens, I wash him up in the bed, dress him and position him so we can use the transfer board to get him into his power wheelchair. At that point, I can have a cup of coffee and get on the computer. It is 10 a.m. and I already feel the need for a nap, but I have breakfast to prepare and laundry to do. The laundry area, of course, is in the cellar.

I mostly do only necessary work around the house. Dusting is not one of those things. It is spider season, so I need to vacuum them and their constant webs off the ceiling. I have the den to straighten up as well as our one guest room.

I will drive eight miles to the pharmacy today and also go to the bank. Perhaps I’ll see more wildlife along the way. As I was returning from my mother-in-law’s house on Tuesday, I had to stop to allow two turkeys to cross the road. The hen crossed first and the male decided to run after her. Only in a small town?

It is time to resume my tasks for the day. I love my husband beyond measure, but I am tired. I miss him. I cannot imagine how I will be doing this ten years from now, but then again I do not know what Multiple Sclerosis will do to him in the years coming. We were told that MS does not kill yet I know of people who have died from the ravages of this disease. It scares me. He is in pain most of the time but rarely complains. God, please help him.

World is Spinning

It’s been a week.

We finally bought a wheelchair van. It was running great. Last week, the battery light came on while we were driving. I managed to get Hubby home and drive his Mom home. Mechanic said bring it in on the 29th, then offered to squeeze us in yesterday.

I jumped the van but when I removed the cables, the van knocked off. After much finagling, it was towed to our mechanic. No word yet on the problem, but it’s probably the alternator. It’s under warranty, thankfully.

My sister had knee replacement today. That has been on my mind a bit since I live so far away. She will stay overnight at the hospital. She’ll finally be free from the pain she’s lived with for about 20 years.

Youngest sister’s kitty had to go to the vet. He’s been given a year to live. He’s only five. She’s helping with our sister. She lives away from family as well, so her husband (greatest of all time) is taking care of kitty.

Hubby is doing well. He awakened me during the night several times when his legs went into spasm or he needed to turn to the opposite side. I’m constantly exhausted. It’s not his fault. I finally fell back asleep and a bloomin’ woodpecker decided our house made for a good breakfast.

There’s so much to do and I have no car. I can always borrow my brother-in-law’s diesel truck (love it). It would get me to the dump and to my mother-in-law’s house so her lawn can be mowed.

Some days I just do not know where to start. There are the endless telephone calls, cleaning, trying to organize… I need a break. Stop the world, I want to get off.

Feeling a Bit Lost Lately

If you follow here, you know that my husband was diagnosed with Primary Progressive Multiple Sclerosis in December 2020 after 2 years of symptoms that could be brushed off as just getting older.

Here is what PPMS means for us. It is not necessarily the same path for others with the same diagnosis.

At Christmas in 2018, his balance issues began. He began using a cane for balance, especially outdoors. At times he appeared drunk and our joke was that he would not pass a field sobriety test. When he saw his PCP about the nagging back pain, Doc asked him to walk for him. His left foot was dragging. Doc ordered an MRI of the brain and a consult with a neurologist who specializes in MS. Hubby had been tested for Lyme and other more likely culprits. When those results were negative, it was time to consider a zebra rather than a horse.

COVID-19 slowed the process quite a bit. We live away from hubs where certain types of care are more easily accessible. It took a while before the vaccine arrived where we live and a bit longer to get an appointment. This was necessary before he could get a lumbar puncture which was scheduled in November 2020.

He went from using the cane, to a rollator, to a borrowed manual wheelchair and is now in a power wheelchair. He can no longer transfer on his own, which is difficult. From cane to manual wheelchair happened in about six months. He’s been in the power wheelchair for about two or three months. It’s helped him get outdoors.

Our day begins when I dress him while he’s still in bed. His left leg does not function, so it’s like dressing a 200 pound mannequin . He’s in pain every single day. After his pants are on, I position him on the bed with his legs over the edge and bring him upright so his shirt can be put on. I then get the wheelchair close to the bed and using a transfer board, I get him into the wheelchair. For now, he gets sponge baths until we figure out how to safely transfer him to the shower chair.

I then fix his coffee and juice so he can take his medications. Because his hands lack fine touch and also due to pain, I now fill his medication containers for the week.

At times he needs help with toileting. His brain does not give him enough time to transfer to a toilet chair in time, thus the urinals.

Holding a cup is sketchy for him now. At times I have to cut his food for him. I try to trim his mustache. He needs a haircut. It’s very long now and it needs washing. I pay attention to cleaning his feet.

At bedtime, I get him transferred into bed and undress him and give him a quick wash. He can’t roll to his right on his own, so I roll him over. He can roll to his left with minimal difficulty. Sometimes during the night, his body contorts due to spasms. He tries not to awaken me. I made him promise to wake me if he needs help and not to suffer in silence.

I stay up a little later than he does and watch mindless television just for the me time.

My heart is breaking. It seems he is slowly disappearing. He has his mind. His jobs are to order groceries online, do the bills and menu planning. I see his abilities disappearing. I don’t treat him any differently. We crack jokes and have an occasional breakfast out and have returned to in-person worship.

He’ll be 70 in the fall. I am afraid of losing him. I love him.

Grieving

My uncle died yesterday. Mom has now lost her two youngest brothers. Uncle John was 86 and recently diagnosed with stage 4 cancer. It progressed rapidly.

He was the last of his siblings to marry. He was fun. He stuck to Chevy Impalas most of his life, mostly the convertibles. When I was about 6 or 7, I was riding the train to Franklin with my grandma. He drove his Impala along side the train as far as he was able and it seemed as if he was racing the train. He was a conductor with a commercial rail company.

Mom told me the story of Uncle John being distracted by a young lady with nice legs while he was driving. Had he not been distracted, he would not have run into the back of the garbage truck with his brand new convertible.

When I was 9, he married my Aunt Katherine. They had recently celebrated 58 years of marriage. Seems like just yesterday.

I called Aunt Kap yesterday. She was holding up fairly well. This was a few hours before Uncle John passed. I then called Mom. She said, “not this one”. Mom turned 90 the day before. She is the eldest and has one surviving brother who is not in good health. I wish I could hug her right now. She’s 500 miles away. If we can get Hubby into her house, his chair is 400 pounds and I fear it would tear up her house. She has carpet.

I miss my family. This is a time when we would all come together in grief and share family stories. I have a few of Uncle John. He put my son on a slide. There was a puddle at the bottom. He got so dirty and I cried tears of joy because that child did not like getting dirty. He was about 3.

Uncle John picked up Mom for a doctor’s appointment once. By then he had a truck. Mom is a tad over 5 feet tall. He laughed when she couldn’t get in and offered to get Kap’s sedan instead. Why do I think he knew this would happen??

Years ago, Mom was scrubbing the kitchen floor. Her brothers waited until she had finished it and then came in before the floor was dry. She took the string mop and slapped all three of them across the face with that dirty, wet mop. I think that’s one of my favorite stories.

I asked Kap to tell him I love him. I know she did.

I’ll miss him so much. He’s now with his parents and brothers, safe in the arms of Jesus.

RIP Uncle John. 1936-2022.

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.

Stop the World, I Want to Get Off

We are trying so hard to find COVID-19 vaccine appointments on our end of Long Island. Everything through the state thus far is more than an hour away, with most available appointments upstate or around NYC. That’s too much for Hubby.

I went to the next town this morning to drop off registration forms at a local Mom and Pop pharmacy. I found out last month after the fact that they had vaccinated 1000 people. Someone from the pharmacy responded to my social media message on Friday and said to drop off the registration form. I went there and saw signs stating no more were being accepted. I went to pay for the birthday cards I needed and the pharmacist stated the list was quite long but he’d take our applications. I just wanted to cry. I constantly monitor chain pharmacy sites as well as the state site. I’m tired.

Hubby can begin his treatment for Multiple Sclerosis 4-6 weeks after his second vaccine. The pharmacist suggested I ask the neurologist during our telemed visit Wednesday if he knows where Hubby can get it.

I also need to get new tires soon if would stop bloomin’ snowing. Right now it’s raining and snow is melting. Hubby’s lab appointment is tomorrow. It’s a 30 minute drive. He now uses a wheelchair and we have no ramp. I cleared the driveway. I backed into the driveway so the plan is to get him to side-step down the front two steps to a waiting wheelchair and wheel him to the car. Too much snow remains to drive into the yard on the return trip so I’ll have his rollator just inside the front door awaiting him. His former physical therapist would not want to know how we get him in the car, but it is as safe as we can make it right now.

It feels as if things will settle once we get the blood drawn, the cardiac clearance done (don’t know who doc will recommend), vaccines and brain MRI. After all that, his first two infusions will be two weeks apart and an hour drive away. Once those first two infusions are done, it then becomes every six months. The manufacturer is covering 100% of the $10K cost per infusion.

I’m exhausted. I’m tired of winter…the winter that was supposed to be mild but wetter than usual. I don’t sleep well most of the time since pain awakens him and he has difficulty rolling over in bed.

When I returned from the pharmacy, I had to prepare a marinade for dinner and then fix lunch, help him with dressing a little, shovel more snow and put air in that confounded right rear tire. Still have to get the tires replaced soon.

This is more a rant than a post. I did get a call from my son today while I was on the way to the pharmacy. It was good to chat with him. I miss my family so much. If the infusions help him to the point of standing without pain or even walking with an aid, maybe a trip south will be in the cards.

In the meantime, we continue our routine and try to take one day at a time. Hopefully we can find a vendor with our insurance for a portable wheelchair ramp until such time as we know if we will need a permanent ramp.

Whee!