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  • Dani Fontanesi

The Truth about Being a Caregiver

Today is day 74 of our 100-day isolation period. Tomorrow will mark 5 months since we first walked into the emergency room in Coeur d'Alene, expecting to walk out with some antibiotics and doctor's orders to "get some rest."

My, how things have changed over these past 5 months.

(Above: The day we were first admitted to the hospital.)

Yesterday we went to the doctor for our typical weekly visit. Until recently, we'd been visiting the cancer center at least 4 times per week: 3 times for infusions (where Matt gets his blood levels checked and gets hooked up to an IV for a few hours) and once to check in with the doctor. Now, we only have to go three times per week: twice for blood labs/infusions and once to see the doctor.

So we're making progress!

Today's doctor's appointment marked a significant turn in the road to recovery. Today the doctor told us that Matt was allowed to be left alone for an hour or two (providing he's not feeling weak/dizzy/etc), which would alllow me to go to the grocery store, run errands, etc, without finding someone to sit with him. This was a huge emotional victory for us.

When I first started writing this post, it was December 4th -- 5 days after we had been released from the hospital post-transplant. The following is what I sat down at my computer to write...

December 4, 2015

Before writing this post, I spent a lot of time sitting at my computer, staring at the screen, feeling an overwhelming sense of guilt about writing it. I got one sentence in before Kevin and Sam (two of our best friends from New Zealand) called. I answered the phone -- thinking it would be great to catch up and hear about things back in Wellington -- but it wasn't two seconds after Sam asked me how I was doing that I burst into tears.

But this time I wasn't crying about Matt. I wasn't crying because I was scared for him or because I was upset at watching him suffer. I was crying because I was feeling frustrated, overwhelmed, and detached from my husband. I feel guilty for writing this post because, with everything Matt's going through right now, the last thing I should be thinking about is me. But here I am -- crying and feeling sorry for myself. So this is a selfish post. It's about my struggles as I take on the role of full time caregiver to my husband, and despite my overwhelming sense of guilt for writing it, I have no one else to talk to about it right now, so I'm using this blog as therapy.

Four months ago I had a full time job that I loved. I had a gym membership with classes that I enjoyed that I would attend 5 days a week. I had friends within walking distance and restaurants and coffee shops that I frequented. I had weekend plans and weekday schedules. I had a husband who did the cooking and I did the cleaning. We shared chores, responsibilities, kisses, and laughs. He was my husband, my lover, my best friend.

But today my life is very different than what it was four months ago.

Today my life revolves completely -- one hundred percent -- around caring for my husband. There are no shared responsibilities. There's no time to go to them gym. There are no weekend plans, restaurant dates, or a job to distract me. There are just medications to monitor, fevers to check, doctor's appointments to attend, chores to be done (lots and LOTS of chores), and meals to be cooked. And if I'm feeling overwhelmed, I can't cry to the one person who has always been my shoulder to cry on. I just have to keep going.

Matt is too weak and tired to speak more than a few words to me each day. He migrates between the bed and the couch and alternates between watching TV and sleeping all day. I scurry to make his breakfast, lunch, and dinner...carefully timing each meal to correspond with his medications -- some which need to be taken with food, others on an empty stomach. And then I deliver his meals to him only to have him look at them in disgust. He has no appetite -- I can't take it personally.

I then have to beg and plead with him to eat something -- anything -- so he can take his pills. The first couple days out of the hospital, he would immediately vomit up anything he managed to get down. The hours I had spent preparing his meals were flushed down the toilet in a matter of minutes. And the hardest part about all of this is that I'm not contributing to his happiness at all -- in fact, I'm directly detracting from it. Everything I do makes him tired, nauseous, or irritable. I feel like I'm torturing my husband. I can't bare the way he looks at me when I tell him he needs to take his pills or drink more water. He glares at me -- too weak to respond and too exhausted to do either. I crumble inside but try to keep a strong face. I have to let him be angry with me if he needs to be angry, but my job is to keep him healthy.

It's a very lonely place to be -- trapped in isolation with my husband who has withdrawn from me. I lost the other half of Team Dani and Matt. I'm now a one-man team fighting the biggest battle of our lives with 10 times more weight to carry and 90 percent less strength. I'm a skeleton of my former self -- broken and beaten down -- but I have to keep going.

I've had a lot of trouble adjusting to my new role of full-time caregiver trapped in isolation. The "wife" in me automatically wants to delegate duties to my husband and the "independent woman" in me doesn't want to spend the entirety of my days serving my spouse. Yet that is exactly what I must do. My days start around 6:30am -- I get up, make breakfast, force my husband to eat, mix his liquid medications, give him his pills, take him to the cancer center for outpatient treatment, come home, clean and sanitize the kitchen, make lunch, give him pills, administer IV meds, clean and sanitize the kitchen again, do dishes by hand (no dishwasher), do laundry (using laundromat across the parking lot of the apartment complex), manage insurance/lawyers/bills/etc, respond to emails/texts from friends and family, clean and sanitize apartment, give more pills, make dinner, get husband to eat, give him more pills, clean and sanitize kitchen again, do dishes by hand again (no dishwasher), help husband shower, take my own shower, climb into bed exhausted, sleep, wake up, repeat...

January 23, 2015

I never finished that post. I felt too guilty about writing it to post it publicly, and I would never have posted it in the height of my sufferings because I wouldn't want to make Matt feel worse than he did already. I needed him to focus on getting better and I needed to learn to live with my struggles -- to accept them, to embrace the challenge, and to find satisfaction in what seemed to be a thankless job. I had a duty to my husband to ensure he was eating, drinking, taking his medications, bathing, and complying with other basic human needs. But it was torturous for him. I knew I had to do it, but it was soul-destroying to know that I was directly contributing to his suffering. I just wanted him to be happy. I wanted to feel his love. I desperately needed him to show me some affection. I needed to know that he understood why I was forcing him to do things he didn't want to do, but I received no reassurances, and it crushed my heart.

I was exhausted and overwhelmed and sad and lonely. And the one person I had always been able to count on for support, encouragement, and understanding was even more exhausted than I was. He was sick and as far removed from me emotionally as possible. I was alone.

It's only now -- a month and a half later -- after we've overcome the worst of it and after I've had some time to adjust to this new role, accept it, and learn to find some peace and satisfaction within myself, that I've decided to talk about it publicly. I've decided to talk about it openly because I know there are many other caregivers out there who feel the same way -- who feel like they are collapsing under the pressure of having the fate of their loved one's health in their hands; who feel like a constant failure no matter how hard they try; who feel lonely and isolated; who feel a sense of hopelessness in a situation that feels like it will never get better.

Now we are 74 days through the isolation period and I've come a long way since then. I've had to teach myself to find pleasure and satisfaction in things that I never would have thought possible. Cleaning a bathroom for the third time in a week just doesn't naturally generate that same feeling of accomplishment that I get from closing a multi-million dollar deal at work.

I've also had to learn to ask (and beg and plead) for help. The problem with getting help when I need it is that most of Matt's family is a 5-hour flight away and/or have full time jobs. And nearly every break I've tried to plan for myself has somehow been sabotaged by external forces. (It's actually become quite comical how true that is.) The luxury of "planning" is a thing of the past, and I've just had to learn to accept that (or, more accurately, reality has finally beaten me into submission, although I put up a good fight in the process and went down kicking and screaming).

Matt has also come a long way. He still can't help with the cleaning, but he's now able to have normal conversations, hug me and show me affection, shower by himself (mostly), and last night -- for the first time in 5 months -- he prepared his own (non-microwavable) dinner! And now, after our doctor's appointment yesterday, Matt can finally be left alone for short periods of time for the first time in 5 months! (Of course, there are still caveats to this, but we'll take what we can get!)

This is a huge emotional victory for us and it means we're one step closer to real freedom again! It will still be many more months before we have "real freedom" -- we'll be closely tethered to the cancer center for some time still -- but each step along the way is a victory worth celebrating! So here's to freedom -- as it trickles in slowly, we're reminded of just how truly wonderful it is!

(Above: Our first few days in the US, Matt spent most of the time inside trying to sleep off his sickness, but I managed to capture a few pics with him and Auntie Rhonda (middle pic) and my mom (directly above) and Uncle Tim on the dock (first pic above). These are the last moments of true freedom we've enjoyed in the last five months. We can't wait to get them back again!)

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