When I arrived this morning mom was on her way out to go to an appointment with grandma's hospice care. She informed me, as she rushed past me, that a hospice nurse was coming out within the hour. After mom left, the nurse came pretty quickly. She checked dad’s vitals and everything looked good. She asked how his pain was on a scale of 1-10, he answered "2". After she was through I walked her out and we had a great conversation. She asked me how I was doing; I told her I was fine. I had gotten through the worst of it up to this point. I decided to tell her about my personal experience with my own chronic illness and how that helped me relate to dad now. It was a good conversation. I like her alot. After she left, dad decided he wanted his Ileostomy bag changed. He usually has his Ileostomy bag completely removed and changed once a week. I've done it a few times and it's not my favorite thing to do. Not because it makes me uncomfortable, it doesn't, it's because dad likes to supervise. When he does that he in avertedly brings my inner child to the surface.
I’ve always tried to maintain a relationship with my dad that was basically adult to adult, not parent to child. I have struggled to deal with pooled emotion that would come up when dad’s voice would take on a certain tone, or he’d use certain phrases that were always hurtful to me as a child. It’s sort of like how a dog is hit on his head or snout to be corrected. After a while every time you bring your hand up to pet the dog he flinches in expectation that you’re going to hit him. That’s sort of like pooled emotion, its things that make you flinch.
Just in case you don't know what an Ileostomy is I'll tell you. An Ileostomy is a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin. Intestinal waste passes out of the Ileostomy and is collected in an external pouching system stuck to the skin. Ileostomy are usually sited above the groin on the right hand side of the abdomen ---- Wikipedia
So anyway there is a special disc that fits around the stoma and is glued down to your abdomen around the stoma. The disc has a circular raised lip that is designed for a pouch to snap securely onto. Then there's a clip at the end of the pouch that you unhook to drain the contents when it's needed. Sounds simple? It's not... You have to make sure that it's put on properly or it will leak. It's really not a good thing when it leaks, I'll leave it at that... Anyway we've learned by trial and error that it's best for dad to not drink Ensure before doing this change out. So the procedure of changing the bag has to be very accurate and very fast. First you gather all of the tools you need. A basin of warm water, a dye free, fragrant free all natural bar of soap, three to four wash cloths, a hair dryer, a pair of surgical scissors, surgical tape and an Ileostomy kit. Don't forget a towel in case of an accident. So once all that is together and dad is ready, you hand him a warm wet wash cloth. I’m not sure how it is with other people, but with dad you have to listen to him telling you what to do for at least 10 minutes before proceeding. Once you are ready you gently peel back the surgical tape that is on top of the attached disc. Usually it's adhered to the skin pretty bad, so you have to be very gentle. Once all of that is off you must peel the surgical tape that is attached to the disc starting from top to bottom. You want to be gentle, but at the same time you want to pull it down and over the stoma and keep whatever contents that is in the pouch, in the pouch. Then dad places his warm wash cloth over his stoma just in case it decides to "spew" and trust me, it does... Once you've got surgical gloves on you have to take a wash cloth and wet it and put some soap on it. You then proceed to clean around the stoma and remove all the glue residue and whatever else might be around it. Then you blow dry the skin to make sure it's dry. Once that is done you must have the disc ready by measuring the stoma and cutting the inner ring of the disc to fit around it. Once you've done that you have to put special glue around the ring and allow it to set a bit. Then you put the disc over the stoma, glue side down, and you smooth out the attached surgical tape onto the skin. You have to make sure it's on properly. Then you need to be fast about getting the pouch onto the disc by making sure the two raised rings meet and snap together. If the stoma spews before you get it together, well, you have to start all over... So once that's all on you put additional surgical tape around the disc base for added protection. That's it, sounds simple doesn't it. Well, it would be, but when dad is grumpy it's very difficult. I'd be grumpy too, so I understand. It does become quite exasperating though and it is very stressful.
The hospice worker brought out a baby monitor so mom can go from sleeping on the couch at night, to sleeping in her own bed. I set it up and dad tried it out. It has an emergency button on it and I’m sure the first time mom hears it go off it will scare her to death. This is the grumpy part... Dad wanted to put it somewhere other than his table, but I told him he couldn’t because it has an emergency button you have to push. He kept telling me to put it here or there and I again insisted he couldn't. Finally after a few minutes of trying to put it somewhere he wanted it he suddenly, in a very irritated voice, told me to put it back on the table because it has an emergency button on it... At this point I decided when mom got back I was going to go run errands for someone...
Later in the day a hospice counselor came by. Her name was Meredith. She sat down with us and very candidly talked about dad's dying with us. I was really glad that the subject was being broached. She wanted to know how mom was doing. Mom immediately started wiping tears. Meredith told mom that it was ok to cry, that is just what you do when you love someone. So don’t be ashamed to cry, wear the tears as you would a badge of honor. She asked her what her biggest fear was. Mom answered being alone. She married dad when she was 19 and he was 20. 44 years of marriage is a long time to be with someone and then suddenly be faced with the prospect of losing them. Meredith gave mom some ideas on how to best handle that. She told her to picture herself after dad was gone, alone in the house. She told her to let herself feel her emotions a little at a time, and eventually she’d see that it will be ok. She assured mom that she had a support system all around her. Mom is also worried about the house falling into disrepair. Dad always took care of things and mom just relied upon that. Meredith told her that if that happened she could call a plumber, or an electrician, or her son to help her find the right repair man. It was suggested that dad make a list of businesses that he used in the past with phone numbers. Mom also worried that I was going to burn out from coming over so much. I assured her that I wouldn’t, and if I did I’d take a break to recoup.
Meredith then asked me some questions. I told her I was doing fine. I told her that I was ok with dad dying, that I had made my peace with it. She asked me why I came over so much. I told her that at first it was an obsessive thing that I just had to do. I didn’t realize at the time that I was avoiding dealing with dad’s illness by being with him all the time. It wasn’t till I missed that one day, Christmas Eve, that I fell apart and was forced to grieve. She wondered if I was there more for mom than for dad. I told her I was concerned that no one, meaning my sisters, would give mom the care she needed. I felt like I had to be there for her for that reason. I thought about it afterwards and hoped it didn’t sound as bad to them as it does to me. I just have a strong sense of duty and loyalty to my parents, which is why I have taken charge of things in my own way. She asked how my two sisters were taking things. One is avoiding coming over for fear of having to grieve, and the other doesn’t come over for reason unknown to me. I know they come by once and a while and at least one of them calls once a week or so… Meredith told mom that she needed to call them and tell them that they need to come over on a certain day so she could go out to check on grandma in the nursing home, or her brother who is in the hospital, or grandpa who is at home alone. She asked me how I felt about that. I didn’t tell her I was mad at them for allowing me to shoulder all of this on my own. I didn’t tell her how much resentment I was feeling, or how I didn’t really seem to care for either one of them at the moment. I just told her it was a great idea, they needed to be here.
Meredith asked dad how he felt about things. He said he was ok. He wasn’t in a lot of pain. He said he was at peace. Meredith asked him about his childhood, she wanted to find out how he was taught to grieve. He told her the story of his grandpa who raised him. Dad told her how his grandfather had gotten sick and he pulled dad aside and told him that he was leaving and that once he was gone, well that was it, he was gone. There was no need to grieve over him. So dad said that he went to the woods that day and cried to himself and then he didn’t grieve anymore. I don’t know how old he was, but I know he was young. Every time he talks about his grandfather now he cries. There were a few other things talked about, but I don’t have total recall unfortunately, so I’m just going to leave this part of things and move on. It just ended up being a good hour long check in.
After Meredith left, mom and dad and I all felt rejuvenated. I told dad that I really enjoyed talking about things, and I hoped that we could do this weekly to see where each other was with things.
I decided that I needed to go home. I had been there almost 7 hours and I was tired. So like I always do when saying goodbye to dad, I squeezed his knee and told him I loved him and that I’d see him tomorrow. Of course I knew when I got home I’d end up calling him around 7:30, like I always do, to say good night to him.
So it was a good day.
No comments:
Post a Comment