Category: multiple sclerosis

Scared

The last several days have been a bit unnerving for me and I am trying so hard to stay calm. He does the same for me.

Last Friday, he fell asleep in his chair but it was time for his medication. It took FIVE minutes to awaken him while calling his name and shaking him.

Saturday morning, he experienced what is called sleep paralysis. He could move only his head and his hands. He was trying to remain calm. He kept telling me calmly not to panic. He said he’d either come out of it or he wouldn’t. He had peace either way.

Saturday night into Sunday morning, I had a total of three hours of sleep. He had two episodes this morning where he was stuck between being awake and asleep (hypnogogia). The second episode lasted more than 30 minutes. He kept talking about blocks and to move the Bible to another block. I finally got out the Bible and read random passages. It calmed him and he was finally himself.

I called his neurologist’s office this morning (I also called yesterday with no response). He has an appointment Thursday. I had to reschedule my PT appointment, but he needs to be seen. I don’t know if he’ll have an EEG or another brain MRI, but we need answers and I will have a list.

I am afraid I will lose him before long. I am not ready for that. I buried my first husband and years later we watched Pop go through hell before he was finally diagnosed and he passed away.

MS is evil. It has brought us even closer together despite the hardships. Not every family who deals with MS has it as “easy” as we do. Their loved ones suffer severe cognitive decline or physical/emotional abuse. Hubby is not that way at all and I am thankful.

I am scared.

Uncertainty in Our Journey

We, as a family, battle Multiple Sclerosis…primary progressive. It is evil.

Hubby can no longer walk. He cannot transfer independently. His hands sometimes fail him and I cut up his food for him. He is in pain every single day. If he complains, that is my cue that the pain is much worse in that moment.

I am in physical therapy now for my right shoulder. It is still painful after five weeks of therapy. Of course, not having a Hoyer lift, nor Home Health does not help my shoulder to heal. We have been trying to get the Hoyer since May 4 of this year. We’ve been trying to get Home Health since November 2022. Home Health is understaffed and those who take our insurance do not come this far east or they do not have the staff.

I feel some days as if I am watching him die a slow death. He has his mind. He can breathe and speak if he is reclined a little. I am at wit’s end. I am so tired of the constant calls to nudge someone into doing their jobs or at least follow up with us so we know what is or is not going on.

It has now been two years since I had a break. Mom will be 91 next week. I miss her, my sisters, my brother and my amazing son.

This is a 24 hour, 7 days a week labor of love. Most nights lately, he does not need to reposition so I can sleep with fewer interruptions. The morning routine is the most difficult. Getting him dressed and taking care of the urine collector is the main task. I eventually get him into his wheelchair. The morning process takes 30-45 minutes.

No, I do not qualify for being a paid caregiver. We do not qualify for Medicaid. If we did, our options would be much better. We will make an appointment with Social Security and see if he qualifies for SSDI. He retired early and was diagnosed with MS at 68. We’ll see. I no longer get my hopes up about anything.

Am I depressed? Maybe. I am on medication. I am calm, but sometimes I feel paralyzed and in denial. We try to get out together. I miss our life as it was just seven years ago when we married. It was fun. I had plans to visit family 2-3 times a year. Best laid plans of mice and men?

Pity party is over for now.