Monday, September 23, 2013

Life Lately

Monday September 23

"Life Lately"

     I have not done too well on this Blogtember. I am just not into it. And the questions just don't reach out and grab me.  This is not Jenni's fault. I am just not that into much of anything anymore. I think that I am suffering a bit of depression. Just situational! But nevertheless.................

     Life lately at our house is just more of the same. Richard has not made many changes. They are subtle. He is confused more often. He hallucinates more. The other day he swore there was a man in our house with a clip board, recording all of our possessions. Of course I couldn't find him. Then he insists the mailman is at the door (at 4 a.m.) and the only thing that will set his mind at ease if if I get up and go see. He is quite a bit more paranoid than he was. He wants to be able to SEE me at all times. When my youngest son asked him where he thought I was he responded, "with another man".  Ha! Ha! That one makes me laugh out loud. I just remind him that I will NEVER have another man in my life. He is IT!  He hasn't changed much physically. Weight is staying the same. His appetite is basically pretty good. His remains weak and difficult to transfer. He is cold all the time. Everyday he wears flannel pj bottoms, a sweatshirt, and is covered with 4-5 blankets depending on how cold he is. He is coughing and choking more. Normal progression of the disease. Mealtimes around here can be a disaster of choking, coughing, and sputtering. We keep a stack of napkins next to his place and try to dodge the spittle if he doesn't get his mouth covered in time. (Sorry if that is too much information) He is more incontinent than he is dry. So, hence, more showers. Which are not easy and wear both of us out. Thank Goodness, most of the time, he can warn me ahead of time when he needs to have a bowel movement (once again, TMI). He doesn't sleep as much as he was in the beginning of this journey. In fact, that is mostly our biggest problem. He doesn't sleep much at all. At bedtime I give him a 10 mg Ambien, along with a 1 mg Ativan, and usually end up around 1:00 giving him another Ativan, which might get him to sleep by 3 a.m. If he is not sleeping, then I am not sleeping. The Hospice nurse has thrown out a couple of names of anti-depressants (for him) but when I research them I am just not sure I want to use them. I am open to all suggestions!

     The kids have finally returned to school. Darian started his sophomore year. His big activity this year for sure is Debate. He had his first debate match this past Saturday. Won One: Lost Four. Not bad for his first time. And they were not accompanied by a coach. Just a parent who filled in as coach. He is also active in Boy Scouts and his youth group at church. So, other than Fridays, he has something going on every evening. Then debates or Scout camp outs take place on weekends. So far he is doing pretty good in school. He struggles with being organized and sometimes that will bite him in the rear end.

     Harley is 13 and an eighth grader. She will be doing intramural drama soon. (She could teach the class!) And she is active in the youth group at church. She participates in her middle school choir and loves, loves, loves to sing. Basketball will start when it gets closer to Christmas. She is a good student as well and most of the time has all A's.

     Both of these kids are jewels when it comes to helping with their Papa. They are so kind and so caring. And so gentle with him. They have seen parts of an old man's body that most kids their age would not see for many years to come. They do all these things without hesitation. And with compassion and caring. It is what it is. Parkinson's Disease is a fifth member of our family. We didn't ask for it. We don't want it. But it is here to stay. And the only thing we can do about it is not let it control us. And that is how both of these wonderful kids deal with it. They love their Papa without conditions!

     As for me.....I am tired, bitchy, and angry. But I am trying to deal with it all. I sleep when Richard sleeps. If he naps in the day, so do I. I try to joke with him and make him smile. I snap at the kids and then apologize. Hopefully they understand and forgive me. I have a wonderful young son who lives about 50 miles from us and he (and his little girl) come every Saturday. On Saturday nights, Justin takes over the care of Papa and I go back to my room to sleep, read, and watch TV. It is 8 hours of heaven. Do you think I sleep well? Nope, I have to keep telling myself that all is okay out there and stay in my room. I am thinking about maybe a two-three day retreat. I would like to go somewhere, all by myself, and try to restore my energy and my faith. I am just in the thinking stages....might happen. Might not.

     Overall, we are doing okay. How are all of you doing? Please let me know.


  1. A retreat sounds wonderful. If you find one, let me know. I could really go for some rejuvenation as well. I am glad you get your Saturdays. I am glad the kids are troopers. They seem so wise beyond their years because of the life they have had. The waiting game has got to be taking a toll on you. I think about you daily and wonder how things are going, so I am definitely glad for an update. Your situation is so much bigger than my own, but I also have "not been feeling much of anything". Mine is anxiety induced. Maybe one day I will be brave enough to write it all down. Hugs and lots of love sent your way. Love you.

    1. It does sound wonderful! I would not even have to leave town. I am thinking about it! These two kids are wise beyond their years. Sometimes I think that is good. But I feel they have been robbed of a normal childhood. I guarantee that if you start writing it down you will feel better Just helps to vent. You don't even have to hit publish if you don't want.

  2. Gosh, how I can relate on several levels, Paula. Still, your walk seems worse than ours right now ... why does bad stuff have to happen to good people? I feel SO guilty for getting bitchy and angry ... just yesterday I was "sweating putty-balls" here in the house, yet Tom was huddled under the afghan, trying to stay warm. I've no answers or advice.... but keeping y'all in my prayers!

    1. So nice to meet you Mevely. We all have our own walk, don't we? And I don't think anyones is worse than another. It is just a greater challenge. Come again.


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