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.


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.

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.

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.

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.

Not Fun Any More

Did anyone tell you caregiving can be hazardous to your health? It is. It’s not just the emotional toll. Things can turn on a dime.

I was attacked by a Beesy Board, which is a transfer board with a sliding disk. I was moving it and it slipped from my hands and landed on top of my right foot.

I called my PCP’s office the next morning. It wasn’t bruised, but it was puffy and was uncomfortable when I flexed my foot to walk normally.

The next morning I was seen by an orthopedic surgeon. He explained that women of my age (old) may not have a fracture show up on x-ray for two weeks. He put me in a boot and I am returning in two weeks for more x-rays. It feels more like a slight fracture than a bad contusion to me.

The boot was amusing for day one. I have worn it since early this morning. It’s heavy. It rocks like a walking shoe does. It’s hot. I finally took it off around 5 pm. My sock was damp from wearing the boot all day. It’s nice to have my foot free to air out. I look forward to getting the new x-rays and seeing if it is indeed a fracture. If it is and he switches from boot to cast, I’ll see if I can get an orange cast for Multiple Sclerosis. Yes, I am weird.

I haven’t had a fracture since 1986, the year the surgeon was born.

It’s been just over 24 hours of wearing this boot, but I can say it is no longer fun. This too shall pass. I am ambulatory. I can remove it when I am driving. I do not have to sleep with it on. Silver linings.

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.

Weekend of Celebration

Tomorrow, Hubby’s Mom turns 90. There is a party at his niece’s house today. This will be his first time at her house in 3 or 4 years. There is no access to the inside of the house but her deck is ground level. He’s excited to be with family for a celebration again.

Tomorrow, we’ll have Mama G over for a simple dinner and dessert. She’s doing great since her cataract surgeries. I’m excited for her. She’s doing so well, although she laments she has more wrinkles than her older sister. She’s fun to be around. Since Mom is so far away, Mama G’s company helps me.

My Mom turns 90 in about two weeks. I just can’t believe it. I miss her so much. Zoom meetings are great but no substitute.

We also have prayer requests. Mom’s youngest surviving brother had a PET scan yesterday and is awaiting results. He’s 86. My cousin had a PET scan earlier in the week, but ended up falling yesterday and will have surgery today to repair her fractured jaw.

I feel so helpless being so far away. The best thing I can do is pray and let Mom and my cousins know I am praying and holding them close.

Today, I will concentrate on the celebration for Mama G.