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Taking care of Jack

crowsdarklove's picture
Posts: 4
Joined: May 2011

My name's Alicia. I have been helping my mom care for our friend Jack for about two years. In the beginning he wouldn't say much about what was wrong with him, but we knew it was more than the Hep C he's had for years and years (he got that from a blood transfusion after a motorcycle accident when he was much younger). We had been helping him drive from Deltona to Gainesville, which is about a 3 hour drive depending on traffic. One day, when we were picking him up from Shands after surgery, he told us that a huge mass had been removed from his pancreas. He refused to believe it was cancer, and kept to that for about the last year. Then, as he got sicker, being sick was all he could talk about, no matter what we tried. The only things that really made him happy were his birds and his 16 year old daughter. It's been very hard to listen to him tell his daughter that he was going to get better and we'd all spend more time together, even when the rest of us knew different. All this time, Jack kept getting sicker and sicker, and the Jack we knew, with his beautiful, corny sense of humor and his love of Ozzy music and the Beatles (he used to dress as Ozzy at anime conventions, and though he wasn't dressed as a character, people couldn't get enough of him!), came out less and less often. He became depressed like I have never seen, and recently that got worse, too. He began falling while trying to make it to the bathroom, and several times his mom, who is 88 and the only other person in the house, would call mom and I to come pick him up and get him back into bed. Luckily(?) mom has experience lifting people, because her father had MS. Then Jack had to start wearing diapers. The day we brought home the Depends for him, Jack felt utter defeat, and it showed. That was about 2 weeks ago, and a few nights later we sat on the side of his bed and I just held him while he cried and screamed, "I just wanna die, dammit! I want to die, why can't I just die?!" We started finding stuff like steak knives and scissors under his pillows, but we all knew he was too weak to use them. After I held him that night, we started talking to his mother about hospice, and she admitted to not calling because she was embarrassed of how venomously angry, bitter, and sad he had become. Also, she was afraid of more bills. Once we let her know that Jack's Medicare would pay, she called. The home nurse came twice, and on the second home visit called and had him taken to the hospice facility. He has been there about a week now. He is much more peaceful there, but the hallucinations have started, along with his arms and legs being freezing cold. Yesterday and today he has made more sense, and yesterday his mom says he was making jokes again. Today he took one look at me in my black and blue lace shirt and told me I look "delicious". I dress somewhat goth and he loves A character named Abby from one of the crime shows, who dresses that way. Jack's only 57. I am 30, and this year my mom (adoptive, but mom nonetheless) will be 50. We have been the only two helping Jack and his mom. My adoptive father is not at all helpful here, and so we cannot expect help or reassuarance from him. Mom and Dad haven't gotten along well in years, so there is that on top of all of this. Add to that, my sister, who is 15, is best friends with Jack's daughter. We are all losing Jack, and Mom and I are bearing the load. We know my sister is spending tons of time making sure her friend is okay, but Mom hand I are dealing with his mom, hospice, medical equipment returns, trying to figure out what meds we can dispose of and what has to go back to the pharmacy, plus driving his mom to visit him in hospice. And getting his daughter to see him when her visitation days come up, since Jack is divorced and is the non-custodial parent due to his illness and her grandma's age.

wow...I know that was a ton, but it felt great to get it out there!

arndog64's picture
Posts: 537
Joined: Mar 2011

Let it out... You and your mom sounds like some good people. Jack is blessed to have you two wonderful people in his life. Keep up the good work..

Barbara53's picture
Posts: 658
Joined: Aug 2009

You and your family have taken on a big job, but if not you, then who? This is such as tender life experience. After more than two years as a caregiver, I still say it's good work if you can get it.

I've also decided that it takes a village to help someone transition from this world. It's so important that Jack (and everyone else) feel supported to the end. What's that sound, the noise made by you and your mother's sparkly new halos? Keep up the angel work. You'll be glad you did.

crowsdarklove's picture
Posts: 4
Joined: May 2011

It means so much to hear from others that I am doing the right thing. I can't think of doing anything else, because I truly hope someone will do the same for me when I am ready to go. It's just that sometimes I realize I have gone for days without giving myself a second thought, and then I realize how tired I am...

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