Red ball, green ball, yellow ball, blue ball...all circling; circling through my hands as I juggle them. Sometimes I drop them and I stare - sometimes in dazed confusion, sometimes in anger and frustration, sometimes in exhaustion and pain. But I always make my way back and pick them up and begin again. They each look so beautiful, I can't resist and much touch them.
I think many of us feel we are jugglers in the game of life, and caregivers have many more balls to play with, which may make the game too stressful, tiring and not as much fun. So goes it in my neck of the woods. I juggle caring for my mom, being with my husband, working a full-time job and other tasks of everyday life. It's not easy and there have been plenty of tumbles to deal with, especially with caregiving for my mother, Devonna.
My role as a caregiver for Mom started last year, although I didn't think of it in such terms at the time. My husband, Nick, and I sold our condo and moved in with Mom. We expected to move out in a few years after we built our log cabin on our new property. At the time, Mom did have numerous health problems, such as migraines, fibromyalgia, arthritis and diabetes. She also has been in several severe car wrecks over the past few years, the last one requiring the Jaws of Life to pull her out. All the while, I just thought that she needed time to heal and would be back to normal, which probably would have been the correct assumption if more problems hadn't been discovered.
Last spring, if I hadn't been there to call 911 I don't think Mom would still be with us. She had a gall bladder attack and the vomiting threw her diabetes for a loop. She was having heart problems as well. After her gall bladder surgery, she went ahead and had a large lymphoma (fatty tumor) removed from the base of her neck. She was able to go back to work for a couple of months, but the pain in her back was excruciating and she eventually had to have two surgeries, one at the base of her spine and one at her neck, to replace disks and fuse vertebrae.
I think it was around the time of the first spinal surgery, for her lower back, that I suddenly realized the enormity of the situation. My cousin, who is a nurse, mentioned that many times people are never the same after back surgeries and there may be a possibility of Mom not working again or being able to get around. It was then that I saw that my caring for Mom might end up being more than temporary. The surgery itself turned out far worse that expected, with Mom needing blood transfusions for anemia and not being able to get out of bed. There was no way that neither I nor my grandmother, who was staying with us for the winter to help Mom, could get my mother out of bed or manage her if she fell. Mom had to go to a nursing home for rehabilitation. The place was terrible and frighteningly understaffed. We were thankful to have her home by Christmas.
Now began the long road of recovery (we hoped). The problem was that even though Mom was finally starting to get around better, she still wanted to be served. On one hand, I love her and hate to hear her gasping in pain - I know how exhausting and horrible long term, severe pain can be. But on the other hand, she must get up and try to make progress. After such a major surgery, you can't expect to just rest all the time, then get up one day and be magically all better. With everything else I have to do, I finally had to put my foot down and tell her that unless she's having an especially bad day, she needs to get up and try to get things herself. I don't have time or energy to wait on her every beck and call.
I may sound harsh but I have to learn to set boundaries or risk letting myself get run over. My mother can be a very demanding person. To her, it's just a little chore that only takes 5 minutes. To me, at the end of at least 10 hours of work, unless it's necessary it can wait for the weekend. I need to get other chores done and try to get rest as well. A perfect example is her library obsession. She used to try to make me go every time books arrived that she reserved on-line (practically every other day). I refused and told her they could wait for a once a week pick-up and drop-off. Part of this problem may also be that she sees me as young and healthy, therefore I should also have boundless energy.
As I mentioned, I also have a husband - another to juggle issues with. We have been together since we were 14 and we love each other very much. We have gone through many trying times and he is my best friend. However, living with Mom has caused marital strain. It is difficult to go back home after having your own privacy. Sometimes I'm annoyed to have someone "keep track" of us when we leave and where we go. I know she's just bored wishes she could do more. I have been trying to do more with her, such as taking her to the pool for exercise, and I do enjoy spending time with her. In all, there are still marital issues that my husband and I need to solve ourselves and I don't think he would appreciate my mother knowing all details of.
My husband is having difficulty accepting living here with Mom. She does drive him nuts sometimes - she can be quite obsessive and when she gets an idea in her head it's hard to turn her off. We do have a nice walkout lower level "apartment" at my Mom's condo, but I think he still feels like he's almost 30 and still "living in a basement." Over all, he hasn't been the most supportive and I end up feeling like I'm caught in the middle. He gets irritated with Mom, but won't say anything to her. When I hear his frustrations, I try to find a nice way to convey the message to Mom, hoping that this will end whatever problem is at hand. I end up exhausting myself and feeling like the whipping post for both sides.
I am doing my best to caregive out of love, not merely doing a duty. At times, when I'm really tired from my job and trying to do too much at home, this is difficult. My husband is having a difficult time adjusting as well and sometimes I feel like I'm in a balancing act. This situation is new to me and I know that it is just a matter of figuring out how to go about it and also learn new life lessons. As with life in general, it is a continuous learning process, one that I don't expect to solve overnight - or a lifetime! I'm making progress, though and am already seeing a difference in my mother and husband in just the past couple of weeks. I still have my bad days, though, and if you ask me then (or read my posts!) I may have a different answer! I'm only human!
My grandmother, Gwendolyn, has also been such a terrific help with Mom. She came to stay with us last fall, when the worst of Mom's surgeries took place. She's so adorable and such a delight to have around. I'm learning so much about her and am grateful to have the time together. She recently became ill with intestinal blockage and congestive heart failure as well and for a while my aunt and I took turns caring for her. She's getting better, though.
What's especially hilarious is to see my mom struggling with issues with her mom! Not that they fight or anything like that, but they just frustrate each other sometimes when they have different ideas on how to get something done. However, there are lots of laughs involved. Mom interrupted Grandma one time, so I grinned and said to Mom, "Don't interrupt your mother when she's speaking! You should respect your elders!" Then I turned to Grandma and said," Daughters! Sometimes they just won't listen!" And yes, they tease me just as bad! Laughter is such a wonderful medicine!
Other happenings in my life the past six months include my husband being in the hospital for pancreatitis. He had extreme stomach pain but no nausea and we had to call the squad. The inflammation in his pancreas spread to his lungs, which were filling with fluid. He was even in intensive care for several days. I was quite frightened, and did the best I could to care for him. He's up and well now, but it was odd seeing him ill when it's always been him taking care of me. I love him so much.
I've also lost my grandfather (Mom's father), grandmother (Dad's "step-mom") and my good friend Deb this last year. I love and miss my grandparents, but Deb especially was a great influence as she gave so much of herself to so many charities. Losing her has also convinced me all the more to live life to the fullest. She used to talk about how she and her husband were going to do so much when they retired. How life would be so much better then. She passed away last Easter at age 48 and never got to enjoy her retirement. I consider her my angel.
Thanks to Empowering Caregivers, I am finding better, more constructive ways to solve these issues. I firmly believe that I can face anything. However, sometimes it just takes me a while to learn how best to go about solving the problem. Several trial and errors may be made along the way. Caregiving for an ill person is new to me and I know it's a learning experience. I have faith that I will get better at handling this. I'm making mistakes and I feel bad when I get run down and cranky with my family. I try to accept my imperfections and forgive myself and move on.
Life in our household is getting better. Since I've been trying to talk more with Mom and encourage her, she has started doing more. I've been trying to gently explain how I feel and that I get tired, too. She has been more considerate. Also, I'm not a real "touchy-feely" cuddler person; I'm more the jokester. Mom and I have grown a lot closer through this experience and we're having a great time teasing each other.
My husband is still not the craziest about being here, but at least he's not been so bad lately, either. I finally put it to him this way - I asked him what kind of a wife he would want me to be if the roles were reversed and we were taking care of his parents. I think this finally made my point, but it would still be good if we maybe had constructive family meetings on a regular basis to come up with helpful solutions.
We still have a long way to go, not only with adapting to the living arrangements. Mom may not be able to make it back to work. She is still having extreme migraines for some unknown reason. She is still in severe pain from her back and can't take sitting up for extended periods of time. Also, she is starting to go color blind in one eye and there is a concern of her developing autonomic neuropathy. Her blood pressure has also been going haywire lately. She may eventually need to retire on disability and I'm not sure what the financial details of that may spell for the three of us. Whatever the case may be, we will get through one way of the other - we always do.
I'm honored that Gail asked me to write the June Spotlight. It has been wonderful to find a site to help out with caregiving and all the emotions that I have been going through. I'm so thankful to have found Empowering Caregivers and so thankful to find Gail and many new and wonderful friends. The outpouring of support and love given at this site is amazing. I never expected to develop such bonds and in such a short amount of time. Thank you all for helping - even those I haven't met. Just reading what others go through helps me and also reminds me to be thankful for all that I have. You, and all the others at the site, have been a real blessing in helping me accept my new role. I am doing my best to love my family and be a positive influence. You have helped bring me peace - just knowing that there are others out there going through the same thing and experiencing the same emotions is very comforting. God bless you all!