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.

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.

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.

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!

Self-Care for This Caregiver

I was finally able to see my primary care doctor yesterday. It has been ten days since I went to the ER about the constant headaches and to get a CT of my brain since I fainted in November and did not know if I had hit my head.

Doc had the ER reports and I printed him a list of my blood pressure results taken at home. He said it was too low, so I have one less medication to take. I am to return next week for a blood pressure check. He scolded me a little for not calling when I fainted a month ago. I had told Hubby not to call anyone. He also scolded me (good natured) for calling myself old since he is five years my senior. I love Doc!

While I was away from home yesterday, Hubby got a call from a doctor somewhat affiliated with our insurance who visits certain patients to do an in-depth health check that is shared with our doctor. I was a bit miffed that he agreed, but her visit today was very good and it may provide help for Hubby that we do not currently have. Hubby says I’m stressed. I do not feel stressed, but I most likely am.

I am glad to get back on track with my health. I may get assistance at home as well. I may need to pencil in a trip to the hospital PT department and take advantage of Silver Sneakers so I can strengthen this poor “old” body and be better able to transfer Hubby without harming myself.

This has been a pretty good day. I have the table top Christmas tree up. I will put the stockings on our imitation fireplace and I will look for the extension cord tomorrow in the light of day. It is most likely in the dungeon…cellar.

There is wrapping to do for those up here and an extra gift for Ma that I will have time to wrap and ship. Some other things will go down to the dungeon, such as a coffee table, manual wheelchair and the rollator.

Hubby has an appointment at the end of the month and his infusion in early January. Things are coming along.

If you are a caregiver, please take good care of yourself. It is truly important. God bless!

Answers for Me?

I have had headaches for just over thirty days, with just a handful of headache-free days. I passed out three weeks ago. Hubby could not see me as his wheelchair was facing the opposite direction and if he moved, he’d run me over.

I waited two weeks before calling my doctor, mostly due to the headaches. He wanted me to have a CT quickly but the insurance company had not authorized it as of four days later.

I chose to go to the ER in the next town over. They did the CT, labs, EKG and heart monitor. Nearly all were normal. I have a slightly low heart rate and a little dehydration.

The Nurse Practitioner recommended a cardiologist and/or headache specialist. She looked at me and said, “you are under tremendous stress”. She advised having someone take over for a period of time so I can decompress. I just do not know how that will happen. I can, however, go to the beach and watch the Sound and the waves crash upon the rocks and the sand. I can do that. I won’t be away very long. Hubby has the phones so he can call if he needs something.

I do not feel stressed, but Hubby says I am. I have plenty to do in order to get ready for Christmas. I can wrap gifts that need to be shipped. Other things I can get locally for those up here. The tree will be a tabletop that we borrowed last year.

As I write, the current headache is barely noticeable. I will see my doctor soon and will get his recommendations about specialists.

We must as caregivers take care of ourselves. I thought I was doing just that, but I suppose I was fooling myself. Please take care of yourselves. It is important! We cannot help those we love if we are not healthy.

God bless all caregivers and families.

Caregivers, Take Care

It is easy to get so caught up in the every day care of your loved one that you forget to take care of yourself. By “yourself”, I also mean me.

This past Saturday, I had just finished transferring my husband from the bed to his power wheelchair. I began to feel hot and lightheaded. Due to the position of the wheelchair, I could not get to the bed to lay down. I went down to the floor. Hubby did not see me fall, but he turned his chair in time to see me attempt twice to sit up and fall again. I have no memory of trying to get up those times. I finally got to my knees and got to the bed. Hubby was understandably freaking out. I did not want him to call 911.

I stayed in bed for a few minutes to get my wits about me. When I finally stood up, my face and arms were dripping in sweat as if I had just come in from the rain. Sweat, feeling hot and dizziness were the only symptoms. I had no symptoms that women have of heart attack. I contacted Dr. Google. My symptoms matched a sudden drop in blood pressure and dehydration. Two hours later the headache returned. It seemed more like a migraine.

It is now Monday morning. The headache is very mild and I feel fine otherwise. I will let Doc know at my next visit. If this should happen again before that visit, I will get help.

Since Hubby is immobile, his cell phone will be on the night stand and the portable phone will be easily reached in the living room. He felt totally helpless. We will also get PERS units (Personal Emergency Response) through our insurance.

I am now pushing fluids. I keep a 16 ounce cup of water nearby to remind me to drink more often. I have repeat labs tomorrow. Doc is out of town and I would prefer to see him rather than the PA and the other doctor who do not know my history.

So, for those of you who have challenging caregiver responsibilities, take care of yourselves. We are not superhuman. We cannot go 24/7 at 90-100% and not have it come back and kick us in the tushy. Set a timer on your phone to take a break. If your loved one is somewhat stable, take a few hours or a day for self-care. You are important. Your loved one needs you, but needs you healthy physically and mentally.

Take care of you!!!

Is Caregiver Guilt A “Thing”?

My time as a caregiver for Hubby is nearly two years old now. If I dare look back even one year, I am astounded by the progression despite Ocrevus infusions.

We are early into November. Today is Hubby’s 70th birthday. Last January he could put on his own shirt, transfer himself into the manual wheelchair and come into the kitchen for coffee.

Less than one year later and he is in a power wheelchair. He cannot move either leg. His hands are losing function and feeling. We now use insulated coffee tumblers without handles. He can manage those better. He can still feed himself most days but it is becoming more difficult due to his loss of control and lack of sensation in his hands.

He can brush his hair. I trim his mustache. I do not do it well. I dress him in the morning. I put his socks and pants on while he is in bed. Most of the time, he rigors (leg spasms). I then go to the other side of the bed and pull the bed pad toward me so we have room to position him for his transfer to the power chair. I have to pull him upright now. He must hold on to the bed rail or he will fall over. He cannot sit upright. I then put his shirt and glasses on him. After all that, we then do the transfer to the wheelchair and head down the hallway for coffee and juice.

That is how our day begins. Lately he has difficulty speaking on the telephone while reclined in his chair. He can no longer do any of the things he used to enjoy. He was a singer/songwriter from the age of fifteen. He was a great cook! I’ve had to learn over the past two years and he says I am getting really good at it.

I find myself resenting at times having to be more than one person all the time. I do what I need to do. I do what he needs done. He was Mr. Fix-It. Now it is another of my jobs. If I do not write it all down, I will forget something important.

I am afraid. Am I going to miss something that causes him more pain? I feel I am never good enough. Caregivers for the most part have absolutely no training. We learn to swim the hard way. We search the internet for help. Doctors to date have not offered resources that would help me help him. I feel the guilt of not being able to fix things that need fixing. Hubby encourages me and is very patient despite his genetics. I expect to be better than I am. I expect to be more patient, more understanding and an expert in all things. When that does not mesh with reality, I feel the guilt. I feel that I am failing him. I love him.

I guess caregiver guilt is real after all.

Happy 70th birthday, my Darling.