Stories from Caregivers: Santanna from ALABAMA
AL
Santanna
FROM ALABAMA
I'm Santanna and I'm my husband Kyle's caregiver. We were married for about 3 months when he had his fist ever seizure... We have since both quit our 2nd jobs. Then Kyle had to reduce his hours and in March he fell asleep in the shower and the doctor said it was no longer safe for him to work. The disability determination sent him to 2 doctors who also said he was disabled yet denied him his SSDI or SSI. The seizure caused or onset so many problems. He already had chronic pain from his neck and back having arthritis, degenerative disc disease, and bone spurs, as well as narrowing of the spine. Well he broke his shoulder when he fell into the seizure and had to have surgery on it and has a lot of nerve damage and pain still all the time. He also has Narcolepsy with CATAPLEXY, idiopathic hypersomnia, depression, anxiety, and very severe periodic limb movement and restless leg syndrome. I have to take him to his doctors get his prescriptions organize his meds daily and wake him for anything he has to do or he will just keep on sleeping, his record is 62 hours with only getting up 3 times to pee, and I feed him cereal or tried while he was unable to wake up. His sleep disorders doctor said he is the 2nd worse case they have ever seen. And we're amazed he was trying to work without medication when he did his Narcolepsy test. They gave him a prescription to help the next morning instead of waiting til his next visit. He is on 13 medications and is extremely fatigued still daily and in severe pain often and has bad chronic pain at all times no matter what medications he has tried them all for fatigue and has has meds, therapy, massage, even had epidurals and facet blocks with the pain still there. Basically he wakes up after I am waking him up for an hour or two at least and is so tired he can't get up immediately and usually his pain level is misery. Yet he always is very appreciative, grateful, loving, and makes sure to thank me and tell me how much he loves me all the time he is awake. But he won't even go anywhere without having me with him due to fear of panic attack's or falling asleep. And has memory problems daily. But I don't mind taking care of him. But his mother is disabled also and he was her helper and would go to her house daily and run her errands for her and now I have to take him and help him help her because or his disabilities. So since we lost his income I don't know what we are going to do. Because before long we will have to sell the truck and pay bills with the money. The hardest part is we are raising 2 kids also and Kyle has a daughter that is 17 and he is behind on her support. Our rent is 4 months owed. They are gonna want both soon. Please know that we are very happy but he feels so useless since he -as has to resign was denied his disability. And he was such a great worker he had 2 jobs 7 days a week for like 3 years up until our wedding day.
