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!

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.

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.

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.

Feeling Deflated

I’m feeling a little down this morning. The Multiple Sclerosis part is what it is and I’ve developed a routine for dealing with Hubby’s day to day issues.

I had hopes that things in this country would have begun to settle down, yet “leaders” are still supporting lies and unrest. It breaks my heart and it has me feeling very disheartened and with a case of the blues. I know my opinions differ from those of most of my family. Sometimes I feel they think I’m influenced in my opinions by others. I am not. I just have a latent political gene and my opinions are my opinions. I am so weary of this. It is not depression but I am aware it could slide that way.

I’m so tired of this pandemic messing things up. Hubby needs to be finished with the vaccine before he can begin treatment for his progressive MS. We don’t have the vaccine here right now. The closest appointment is more than 60 miles by interstate. The interstate is a 30 minute drive from here. We’re in the boonies.

The fantastic news we received this week is that the cost of the infusion medication will be covered 100% by the manufacturer due to our income and the type of MS he has. Full cost of that medication is just over $10,000 per infusion which is every six months.

We’re still trying to get a temporary wheelchair ramp from the Town. Our Habitat for Humanity does not currently do ramps or house repairs. Our pastor is helping us track resources for that. It would help immensely. We have adaptations to make but not that many.

Hubby tries to walk with the rollator every day at the same time. His shortest walk was 3 feet and the longest was about 15 feet. He has even made his own coffee twice this week. He tries to take some of the work off of me. We put the new coffee table together as a couple and I think that helped him mentally.

We’re going to make it. There’s just so much going on at one time. I’m ready for spring and I’m ready for this pandemic to be gone!

Singing the Blues

It’s a hot summer day. We have another leak from the bathroom into the cellar. It’s not a huge leak but I’ll call our guy.

At 8:30 this morning I received a call from the town asking if my porch rail was ever installed. I assumed it was not done because of the pandemic. We did have to wait until the ground was no longer frozen but that’s been a while. The carpenter from the town was sent over. He’s nearly completed the job. Of course the design hubby told me was not what I interpreted so he was like a dog with an old bone. I was in tears but not in front of him. He finally said as long as it’s comfortable for me. He wheeled to the door and had a better sense of the job.

He’s frustrated because he has brain fog. He can’t walk. He feels tired and weak due to the heat. The rail, the leak and everything else going wrong around here is something he would normally be able to fix himself. I’m left brained. I am very literal. He’s artistic and an engineer. I’m frustrated too.

We’re now dealing with more issues that are out of his control with the multiple sclerosis. I’m feeling a bit lost. It’s still not depression. He probably has a little of it himself, though. The next specialist appointment will be July 20.

The good in this is that he tells me he loves me and it’s from his soul. I love him with all my heart. The love part is easy. I would just like for things to go right for a change. I’m weary. I feel defeated some days. I do not like cooking. He does but is unable to cook. It’s all on me.

I miss my family immensely. My sister has surgery next week. My other sister is driving down to help. My son may also help. He’s nearby. I try not to be away from home more than an hour. We have no help with day to day issues.

Yes I have the blues. I’m physically and emotionally exhausted. We did have company this weekend. His Mom, sister and niece came by Saturday, distanced. His daughter, husband and kids came by Sunday and we were on the deck, distanced.

This pandemic just adds to the stress.

(Update: I took pictures of the final porch product and he likes the character and is satisfied that it’s comfortable for me. I’ll use a light stain on it later. It sure smells good. I love the smell of cut wood.)

Feeling a little less blue at the moment. I just need a break but by the same token so does hubby.

Feeling Down

I should be happy. My sister came through an unexpected surgery today for another post cancer complication. Hubby’s birthday was yesterday and we had a visit today from his little grandson. His daughter brought a small cake.

After the visit Hubby was down probably because he had to hold onto the wall as he went to the bathroom. We have two more weeks before his neuro appointment. He doesn’t want more tests. He just wants to walk. He doesn’t want a more sturdy cane or walker unless he has no other option.

This hurts me. I can’t help my husband. I wasn’t there for my sister. I miss my family. I pray daily. It’s been two years of no answers. I’m not a patient person so by now I should be on my way to sainthood.

I see the doctor Monday. Everything will probably just spill out.

I just feel helpless. I should be happy.