Out of Sight... and In Denial

Debbie

Out of Sight... and In Denial

Debbie
so, within that same year, he lost one of his brothers to a heart attack.

In 2005, Richard moved to Florida from Texas, and we met. A year later we married. We had a great life together, a better second marriage for both of us. We traveled a lot--20-plus cruises, to Texas to visit his family more times than I can count, to the Carolinas and Georgia, San Francisco, New York, the Bahamas, and of course short trips around Florida. I had a friend and lover I was going to grow old with.

Then our world came crashing down. The cancer was back! This was 2010. I insisted he go back to the cancer center where he was originally treated (they opened a branch in Florida about three hours away) since they had all his records. After all the typical tests, they said we should get our affairs in order, go out to Texas to see the kids and family. There was no treatment.

That didn’t stop us. We spoke to everyone and anyone we could about alternative therapies. We went online and read everything available about natural “cures”. I bought and read so many books I can practically start my own library. We flew to Texas for (supposed) stem cell therapy. We tried Reiki, Theta Healing, Acupuncture, Budwig Protocol. We changed his (and my) diet to organic, fresh foods. We juiced. He flew to San Diego for Matrix Energetics. That seemed to help for awhile. The lump on his neck decreased by half the size and we were hopeful. He started seeing a naturopath doctor and using his home-made remedies. I don’t think there’s a supplement out there he hasn’t tried. But it was not to be. The cancer continued growing with a vengeance.

It started affecting his voice. The tumor was pushing on his vocal chords. I made him see an ENT to see if there was anything that could be done. We also went to another cancer hospital for a second opinion. Then it grew and started affecting a nerve; he developed Bells Palsy type symptoms. The entire left side of his face drooped. And his tongue swelled to where he can’t ingest anything solid and he has trouble talking. This was back around November of 2012.

At Christmas time, we went out to Texas to see the family as we had done every year. And as every year before, all the brothers, sisters, kids, grandkids were there. Everyone was aware of the situation. However no one - with the exception of one of his brothers’ wife - acknowledged it. No one asked how he was feeling. What we were doing. No one commented on his speech situation, or this huge growth on his neck, or the fact that his face was lopsided. It was driving me crazy. (You can read about sister-in-law Laura in one of my previous rants).

I decided I was going to make a surprise birthday party for Richard in February of this year (2013). I invited his family. (Because of his rapidly declining health, I ended up telling him about it because I didn’t want everyone to fly in if he wasn’t up for it.) His two brothers said they’d come. Mom didn’t know. The party was perfect! We have some very good musician friends, so I cleared the patio and the band set up. Everyone had a great time. That turned out to be the last time Richard was mobile. Both brothers (and wives) and one of his sons (and wife) came in for the party. Mom didn’t come. Sister didn’t come. The following month, I paid for his other two children to come to Florida to see their dad. I had a feeling it would be the last time they saw him.

A couple of weeks after the party, Richard was accepted into Hospice palliative care. They supply all the meds, all the supplies and a nurse visits once a week to check his vitals. He’d been mostly bedridden since the end of February. I was able to get him into a wheelchair to get him outside for fresh air until about six weeks ago. He’s now completely bedridden.

I can’t understand why his mother hasn’t come to see him. I realize she already lost one son and doesn’t want to lose another. But she IS losing another son whether she likes it or not. I received an email two days ago and I quote: “Hope Richard is doing ok, I think of you both every day and keep the prayers going. No new news here, my love to both of you.” Is she kidding? I hope Richard is doing okay?! Has she not heard a word we’ve said about his situation? Does she not realize that anytime we speak to her on the phone that it’s me she talks to because her son can barely talk anymore? I’m wondering if she thinks we’re going to come out for Christmas as usual. How can she be so ignorant? And his brothers and sister as well. My mom lives locally. I speak to her every day and see her a few times a week. She’ll call me if she hasn’t seen Richard for a few days and ask if she can come over and see him. Just to give him a kiss and tell him she loves him. How can HIS family ignore him? How can they live in such denial?

But I see the denial with Richard too. I asked him a few weeks ago how he feels about what’s going on. He said he doesn’t think about it. What? What else is there to think about? He does nothing but sleep 16 to 20 hours a day and watch TV the rest of the time. His mind is as sharp as it’s ever been. How can he not think about his situation? It’s making me crazy. He won’t talk about it. He won’t let me talk about it. Or about anything that’s not positive. He actually asked me a couple of months ago what happened to the happy woman he married. Are you kidding? My husband is wasting away in front of me and I’m supposed to be happy and cheerful?

So I go about his care with a smile on my face… and cry when I’m alone.

I don’t know how long this will last. He’s below 80 lbs. but his heart and his blood pressure and his pulse are as strong as ever. He doesn't want to die. His brother said a few weeks ago that he thinks Richard is waiting for something. Maybe to see his mom and siblings one more time? I don’t know. I’ll never know.

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ejourneys

Hi, Debbie -- Welcome to Caregiving.com.\r\nOne of the many reasons this place is a sanity-saver for me is because I can vent and rant here and be understood. Just being able to get it all out makes a tremendous difference -- we can relate here in a way much of the \"outside world\" can't or won't.\r\n\r\nI care for my partner, who has MS that acts like traumatic brain injury. It's a condition that acts like schizophrenia -- her neurologist says he can't tell where her MS ends and her mental illness begins. We almost never hear from her family at all, and I am the last of my line.\r\n\r\nMy partner doesn't reach out, either. Part of the tricky balance for me is that I respect her wishes, while at the same time wishing that she can connect with someone in the family whom she trusts, given various abuse issues. As the saying goes, \"It's complicated.\"\r\n\r\nTo echo what others have said, please express whatever you need to express here. This is a safe, wise, and loving place.

Denise

I'm so glad you wrote this, Debbie. I can only imagine what a nightmare all of this feels like. Even worse, you can't talk about the nightmare. \r\n\r\nThere's so much fear in these situations, which I think lures us into denial. We can't face our fear so we put our head in the sand. \r\n\r\nPlease blog as often as you need. We're here to listen.

Thedogmama

Oh Debbie, I am at a loss for words. I have only participated here for three weeks, but I can tell you the members of CareGiving.com are the most supportive people I have ever seen. Each comes from a different perspective, but they all listen and provide comfort and support whenever you need it. I don't have any words of wisdom, just know my thoughts are with you.