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.

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.