Stories from Caregivers: Kay from GEORGIA
GA
Kay
FROM GEORGIA
Currently I am the sole caregiver for my husband, Richard, age 69 (turning 70 in August) who has remaining deficits from a stroke he suffered in May 2015. He retired on March 31, 2015 and had his stroke in May 2015 while we were at the beach on vacation. Prior to the stroke, he was a relatively healthy 67 year old. The shock of his stroke and the serious damage to his brain brought me to my knees. He suffered an ischemic stroke on the right side of his brain thereby affecting the left side of his body. He was initially in intensive care, and later spent 8 days in the hospital in Florida and 6 weeks of in-house rehabilitation. He has been able to recover movement of his left leg, but he cannot use his right arm/hand, has serious left eye neglect, difficulty processing information as well as short term memory problems. In June 2016, he had a seizure and was put on medication to prevent additional seizures. Then in September 2016, he fell in the bathroom and broke his left hip. This lead to hip replacement surgery and a second round of 5 weeks of in-house rehabilitation, then home healthcare for a couple of months, and a return to out patient therapy. He can walk slowly with a cane. I keep a wheelchair close by in case he "gives out" while we are at church or the doctor's office. Due to his limited vision, he is unable to use an electric wheelchair at a store. Prior to his stroke, I had no caregiving experience, except for being a mom with young children. I stayed with him every night in the hospital and then visited daily during his rehabilitation, sometimes spending the night. The hospital and rehab facility were approximately 50 miles from home. Nurses, family and friends kept telling me I was going to wear down and that I needed to rest before he came home. But that made no sense to me at the time - I felt like WonderWoman. I could do it all! Was I ever in for a big surprise. He needed help with everything - dressing, showering, grooming, medications, memory problems. We both fell into a season of frustration and despair. We had been married 47 years at the time, but our relationship was upside down now. He always managed our home from a maintenance standpoint. He did the lawn, repairs to the house, kept up the cars. (He never even trusted me to hang a picture in the house!) I was the one who "kept the books"; I paid the bills and kept track of our money and investments. We were "balanced"; we jokingly called him COO and me CFO. Now I was thrown into doing it all with extreme limitations on how to do his former responsibilities. I was so overwhelmed, exhausted and depressed. The worst part was he thought he could still do everything he had done, and we would have huge arguments over little and big chores that were physically impossible for him. Once he stood at the front door and yelled instructions as I attempted to cut the grass. I never did anything the way he believed it should be done. So the yelling continued. I got no thanks for trying my best, even if it wasn't the way he would have done it. He has gotten a little better about this, but there are still issues. He is easily confused and gets very agitated. Adjusting his medications to deal with some of these issues has been on-going. In late 2016, I decided to sell our home. The day to day up-keep and maintenance was just too much for me. One week before we were to move, he fell and broke his hip. So on top of trying to pack up everything to move, I was now running back and forth to the hospital. Since we were going to be renting and downsizing, I had to make some difficult decisions. It has been almost a year since we moved, yet when he discovers or is told that I gave up things we didn't need, he gets upset and yells at me. His therapists, our sons and myself have repeatedly tried to explain that he can't use electric tools with his limitations. Trying to get him to accept his new condition and capabilities has possibly been one of the most difficult parts of being a caregiver. We may have the same conversation today, tomorrow, or the next day, but it too often ends in an argument because he just can't (or won't) process what he is told. I take medication for depression, but I still break down about every 4 weeks. I try so hard everyday to be patient but I've usually failed by lunch! I have to remind him repeatedly everyday to take his pills, even when they are put right in front of him. I keep two calendars in prominent places plus one that lists all his activities for the month. I even got him an Echo so he could ask for the time and weather. He can't remember how to use it or that we even have it. Because of his left eye neglect, he misses all the food on the left side of his plate, and he has to be reminded to turn his plate. He tries to dress himself, but most times he will have his clothes on backwards. He can't remember how to use the remote control. I try to keep activities available to him, like brain games, paint by number, computer games, but he quickly loses interest. One of his doctors told me to give him a to do list, but he forgets where he put it. He has lost all his filters, he may say anything, at any time that is totally inappropriate for present company. I get my feelings hurt because I don't understand that after all I do for him, how he can say such ugly things to me. In my brain I know he can't help it, but it still hurts. We both see a psychologist, separately, and the doctor keeps encouraging me to get sitters for him, which I do from time to time. Taking him shopping or out to eat is really hard by the time I get him in and out of the car or seated at a table. He struggles to understand instructions no matter how simple I try to make it. I have no family close by so getting relief from family members is rare. Our sons are sympathetic, but they still struggle with not having "their dad" anymore. We've always gone to the beach together in the summer, but last year was a fiasco, so I decided to stay home and not ruin everyone's vacation this year. I think that sent me to a new low. I relish his naps every afternoon, and I stay up later at night just to have some alone time. I've recently started practicing yoga and meditation. I try to sneak out about once a week during his nap to meet a friend for a late lunch or coffee. I now realize that I cannot be with him 24/7 and remain sane. I'm looking into some short term respite care so I can take a short trip. It's not cheap, but I'll gladly cut back on something else in order to leave him well cared for and have a peace of mind. On really bad days, I've threatened him with permanent placement in assisted living, even though realistically it's not affordable. In the moment I honestly believe that I could do that and be happy, but reality sets in and I think how can I leave my mate of 49 years! I can't! Plus, wouldn't that make me a terrible person? I still want people to think I'm Wonder Woman! Something I have not mentioned in my story is the outstanding support of friends, old and new! He has male friends who come get him for lunch or dinner or church functions from time to time. And I have friends that call or text regularly. When I've been face down on the floor crying that I can't go on, friends have miraculously come to the rescue, every time! Friends stepped up when I moved last year and filled in the gaps - they packed, built shelves for storage in the garage, moved boxes and brought food. Moving alone was so overwhelming! But people showed up in unbelievable ways that I will never be able to repay! And that brings me to the last thing I want to say. This life changing event and the struggles it has laid in my life, have made me so much more aware of others. I see people who have much more difficult situations to deal with - caregivers that I've met at doctor's appointments and therapy sessions that are faced with some really tough stuff, impossible stuff! Because of this I jump at the chance to do something to "give back" a little of what has been so graciously given to me. It has always been hard for me to admit I need help, but I've learned that it makes people feel needed when you ask them to help. (And it's not the end of the world if they say no). I am more aware of other people with disabilities, and I'm learning that it's okay to slow down and give them the respect they deserve. And I've realized I have to take care of myself physically and emotionally in order to continue being his caregiver. Admittedly, I do still worry a little if something happens to me, what will we do? I try to push those thoughts far away. There are things that I miss terribly - companionship, conversation with someone who can process what I'm saying, a hug or snuggle, someone to just take out the garbage or bring me a cup of coffee. Little things I took for granted for 47 years. It is so hard to watch his deficits get worse rather than better, and his body grow weaker. I long to pull the man I knew out of the shell he is in now. My heart aches and if possible, is broken a little more each day. I refuse to give up - I will strive to make each day better.
