From Loops To Drops: A Journey Through The Rollercoaster Of Emotions.

 I never was a fan of rollercoasters. Some people describe rollercoasters as exciting, exhilarating, and thrilling, not me, I describe them as stressful, scary and nauseating. Having a chronically ill spouse  can evoke the same kind of emotions I feel when I think about a rollercoaster ride. Although most days in the life of being a care taker to my husband, are routine. Many days feel like Ground hog day, the same thing over and over, but even though the days seem the same, the emotions are like the rollercoaster. Some days you can burst in to tears and you don’t even know why and other days you can laugh about it. I have spoken on this topic many times, but this year, just in the last 6 months, there have been so many changes. It seems like every time we get into a routine and start to get comfortable or at least neutral, like that rollercoaster, the scary twists and turns come, such as hospitalizations, bad lab results, different pain, spiking or dropping blood pressure, or a new infection to name a few. 

I’m hoping by sharing my experiences in all this, I will help someone who may be going through something similar. Sometimes it helps to know you are not alone or crazy. I’ve always been one to try to stay positive and hopeful, I still do, but in the last six months I have really learned to give myself some grace. To realize that it is really ok to feel all the feels. The feelings I have felt this year have been a hodgepodge of emotions. I have felt anger, happiness, sadness, guilt, joy, fear, impatience, resentment, gratefulness, and love and so much more. Feeling all these things over hours, days, months and years can make you question your own sanity.

When I first started feeling the negative things such as resentment, anger and impatience, I would feel so guilty. I would have thoughts such as “how can you have these feelings? What if he dies tomorrow?” But the truth is, any of us can die at anytime, sick or not. None of us really knows when our number will be up. Even though the changes in our lives are due to the disease or number of illnesses, it still didn’t stop me at times of resenting Mike, even though I logically know these things are not his fault. Often I felt guilty and like I was a bad wife, but with lots of prayer, I finally have learned to cut myself some slack, I am human after all. I am no saint, but there is no doubt in my mind that many people in my situation couldn’t handle these cards that we’ve been dealt and they would have checked out a long time ago.

Well intended people have often given me unsolicited advice. I recognize that their hearts are in the right place, so I never really get angry about their advice, such as “You really need to take care of yourself or you won’t be able to take care of him.” but many times I have also thought sarcastically “Wow, what a great idea, wish I had thought of that.” I know people mean well but unless a person has gone through being the caretaker of a chronically ill person whom you live with, they don’t really get it. Don’t people realize if I had time to do things for myself, I would? Taking care or being constantly concerned of the ups and downs of this type of life, is not for the faint  at heart. Speaking of that, it drives me crazy when people say “you’re so strong”… I didn’t realize I had a choice. Again, I know people are trying to help but something’s are just so frustrating. 

Not just the changes we live each day, but the changes in our outside world make me feel many different things as well. It hurts that many friends and family don’t visit or reach out. It’s like because Mike’s abilities have changed, they no longer bother with us. It kind of feels like some do when they get divorced of have a child and the friendships fade. Everyone knows that Mike is often here alone while I work, yet they don’t bother to visit. Yesterday his visiting nurse was here and I was listening in on the camera (because he never remembers what she tells him) and I heard him tell her this whole story about something that shouldn’t have been shared. I texted him and told him to stop talking. He said he realized afterward he over shared. I felt bad though because it just showed me how lonely he is. He just wanted someone to talk to. Often when I get home from work, we will have supper together, but I retreat to the bedroom early. At times he has said “you’re going to bed already?” And I feel guilty knowing he is lonely, probably missed me during the day, but at the same time, I am exhausted after working all day. I’m not going to ask people to visit, I have in the past but I already feel like a burden asking people for help with rides. We have more acquaintances stepping up than life long friends and family. Don’t get me wrong, we are both extremely grateful for these people who have graciously helped us, but again with the feelings of gratitude for these people, comes the sadness and disappointment of those who say “if you need anything…” why do people say that when they have no intention? 

Changes can be good, but they can also suck. Everything now has to be scheduled. I used to love being spontaneous, just jumping in the car and going wherever, no plans, just taking off for some fun. We (or I) spent a lot of time with friends, many of my weekends were spent with our grandchildren, who are the biggest source of our joy. 

I work two jobs, have a camera in our home to check on him, to make sure he doesn’t fall asleep without his oxygen or hasn’t fallen on the floor. Once I’m home, I do whatever care he needs as well as the dog and the household things. Two days “off” on the weekends, but although on Saturday and Sunday I don’t work the jobs I get paid to do, I spend my Saturdays dropping him off at dialysis, going grocery shopping, bringing the groceries home, lugging them all in myself and putting them away. By the time those things are done, I’m putting the dog out, possibly sitting for a few minutes and then back in the truck, driving back to the dialysis center to pick him up. Sundays are a little more laid back but still include his care, making Oscar’s food (we make our dog’s food) and making sure my laundry is clean for the up coming work week. As far as all the other housework, it’s been neglected forever.

Most of the time I am just going through the motions, on auto pilot, as I said earlier, Ground hog day so to speak. Whether I’m in the middle of my work day or in the middle of my sleep, so many feelings hit me without warning. Some of my stress feelings seem to appear in my dreams and I wake up with a headache or feeling like I didn’t sleep at all. I can be driving and hear a song and burst into tears, some songs such as Billy Joel’s latest “Turn the lights back on” or Carrie Underwood & Brad Paisley’s “Remind Me”, often make me miss the physical and emotional relationship Mike and I shared before his illness robbed us of it. Although we are aging, I don’t feel we are that old and it hurts to not be able to share the physical closeness we used to. 

Although every day appears to be a repeat of the last, every day does seem to bring a new challenge. A new cut, fall, burn or something spilled, dropped or broken. Today, after getting home from dialysis, we started watching tv together and I can’t concentrate. Instead I’m racking my brain on who I can ask to fill in the spots of his calendar where he needs a ride to or from dialysis next month so I don’t have to take time out of work, I’m out of sick days. I’m also thinking about how I need to get this house organized and make room for his inevitable need for a wheelchair. I’m sitting here thinking of what I can do to make things easier for him. The things we take for granted have become extremely difficult for him if not impossible. He can no longer see or reach anything in the cupboards. He has a “grabber” but because he can’t see in the higher or lower cabinets, the grabber is useless. His inability to look up due to his neck fusion and his inability to bend low from his broken back and hip fusion, makes him not able to help himself much. Even if I leave a prepared lunch for him in the fridge, it has to be right in the front, or it doesn’t exist. Every week he helps by writing me a shopping list and I end up buying things we don’t need or I realize I had just bought whatever the item is and know we can’t possibly be out of it. Because he can’t see in the back of the refrigerator or up or down in the cupboards, he assumes we need things that we actually already have. At one point we had 4 bottles of lemon juice, I don’t use it and he kept adding it to the list, so I assumed he used it all, he didn’t, he just couldn’t see it on the top shelf. A few weeks ago he asked me to buy him some sun chips, I bought him 3 bags, out of habit, I put the chips on top of the fridge. The other day, I realized he hadn’t eaten any of them, stupid me… he can’t see on top of the fridge. I put them on the counter where he’d see them and he started eating them. Sounds so simple, I’m sure. But it’s a constant thought of problem solving.

The guilt feelings arise when I snap at him or get impatient. It’s such a hard balance. On one hand, I try to encourage him to still do the things he is capable of doing. I know with his physical changes, he has expressed insecurity and feelings of inadequacy. I hate the thought of him feeling like he is useless or a burden because although I have my days of impatience, I have never felt that he is a burden. When you love somebody the way I love Mike, it’s no sacrifice. 

The balancing I spoke of is knowing what he can do and can’t do. I try hard to listen to him and respect his thoughts but between his medications and Uremia (buildup of toxins in his blood) between dialysis appointments, causes fatigue, nausea and change in mental status. So far he has been managing his own medications, but I worry he is going to over dose or make a mistake with meds that will be detrimental to his health. His doctor has the same concern and prescribed Narcan for the house, but often I’m not here. That scares me. He says things like “I’m not going to OD” or “I’m not going to fall”, which drives me nuts, because were his other falls planned? Does he think people who have overdosed, planned it? Of course not. I’m sure he feels I’m a nag when I tell him to be careful, or when like today he wanted me to go into the house first because he walks much slower with his walker up the wheelchair ramp, but I told him I’d like to be behind him in case he falls and as usual, he said “I’m not going to fall”…ugh! Accidents happen and he has had many falls.

Just one example of his confusion is, I am what I jokingly refer to as his social calendar secretary, which in reality is me keeping track of all his doctor and dialysis appointments and scheduling rides each month. He had one appointment last week which he knew about for about 10 days prior. He told me the date but said he would find himself a ride and for me not to worry about it because I had just finished finding the last ride needed for his dialysis schedule for May. I was a bit apprehensive because I know him well, but I wanted to give him the benefit of the doubt. He is a grown man and surely could take responsibility for one appointment and ride to and from. He procrastinated and asked his sister, just 2 days before the appointment. She was in the middle of a big job at work and couldn’t do it. He tried a benefit of his insurance the following day (1 day before said appointment) because they offer 12 rides a year to medical appointments. He found out that day, they will only provide rides within 30 miles of home. This appointment was a bit further. I had no choice but to use my last sick day to take him to this appointment. I was annoyed and even more so, when we got there, I asked him where we are supposed to go and he said he didn’t know, that I was the one who said it was at the address I brought him to. Now I was more than annoyed because he messed up and blamed me. Luckily once he looked it up, we found the address was right down the street from where I had taken him. I was so aggravated. It took me awhile to get over it and then the guilt set in when I started thinking it was probably due to the Uremia. He has always been a procrastinator, so that part may have just been his normal self, but the confusion of times, places, blaming me etc, are all part of the mental confusion and forgetfulness. The confusion can be frustrating for both of us but what bothers me more is when he gets upset with me because he thinks he knows what he is talking about. When he realizes the reality of the situation, he won’t apologize, he’s too stubborn, I think that’s the French in him.

Then there are the feelings of love, heart break and fear. I often fear finding him dead and it’s such an unsettling feeling. The thought of him dying and even more, his own fear, breaks my heart. Then there is the love. They say love conquers all and maybe in some ways it does, but love doesn’t stop him from being in pain all the time. 

So if you are in a similar situation, give yourself some grace. Feel what you are feeling and try to be ok, no matter what array of emotions you are dealing with. Buckle up and do your best to embrace this rollercoaster ride. Whatever is going to happen is going to happen. Try to lean on God, because it is him who will never leave your side. I wish I could tell you things will get better, your friends actually do care about you, you are not a burden to others and people aren’t sick of you asking for help, but the truth is…I don’t know if it will get better, I don’t know if I’m a burden and I suspect but don’t know for sure that people aren’t sick of us asking for help…. What I do know is I am feeling all these things and I bet you (caretakers) are too. If you ever want to talk, reach out.