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.

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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.

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.

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.

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.

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.

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.