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Cognitive impairment is new to my brother's mental state. I've been accustomed to his schizophrenic dillusions and his manic behavior for many years but not this recent development of dimentia. In some ways the childlike behavior makes him easier to be around. He doesn't have the paranoia that was so much a part of his mental illness. That seems to have vanished for some reason. He's just very much like a 9 year old boy in a 63 year old body. He gets frightened easily and that is hard to witness. I do my best to calm his fears but it isn't always easy. He also gets very confused at times and needs his routine to be consistent in order to keep his anxiety at a managable level. I wish I knew what happened the night he had his psychotic break. I don't know if he suffered an injury or if his mind just betrayed him in some catastrophic way. All I know is he hasn't been the same since and it has been six months now. I hope to get him a neurological examination soon and maybe we will have more information. I need to know if his cognitive decline will continue. I need to know in order to plan for his future.
I've been thinking about a revenue source for hospitals. I think they should have a wedding coordinator for seniors on staff at the hospital. They could offer weddings in the chapel for seniors so that if anyone gets too excited they have medical assistance readily available. They could offer private rooms for couples.
Ron cracks me up! He is so quirky and I love it! He refuses to eat when commercials are playing on tv. He is protesting commercials, I think! To me he's just giving them his undivided attention.
Yesterday we stopped at the grocery store on our way to my daughter's house. We were picking up ready to grill shish-ka-bobs. They were packaged 2 to a package and labeled 2 for one. So Ron inquired if that meant 2 packages or just 2 per package. The sales girl said it was 2 packages for one price but that they just took 50% off each package. According to Ron, this was not a true 2 for one sale and it was false advertising. So, he put them back. Now, when I did the math it looked like a good deal since they didn't just charge you the higher priced package. But to appease Ron's sense of justice I had to find 2 packages that were priced the same. Oh, brother! Had I known that husbands could be so entertaining I would have gotten one years ago!
Ron and I took Mike to the sunrise Easter service this morning and Mike did very well. The little ceramic angel was there again this Easter and seems to have become a regular feature for Easter services. http://oklhdan-musingsamiddleagedwoman.blogspot.com/2009/04/easter.html
I told Mike that mother is still singing in the choir. He teared up a little but he did just fine. The service was a little shorter than usual but just about all Mike could handle.
Yesterday we worked on some of the wedding details and today we are getting some badly needed rain. I want it to rain really good next week and then GO AWAY for the 7th!
Ron went to each of my daughters and asked permission to marry their mother. Jamie said, "I thought that was why we rented the chairs" and then cried. Julie said, "It was ok 10 years ago" and then she cried. But they both said yes.
I can't wait to get this show on the road!~
Ron wasn't feeling any better last night. He was very quiet and just sat in the recliner wrapped in a blanket. His body temperature seems to be all wacked out and he's cold most of the time. I'm hoping it is just because my house is cooler than what he is accustomed to. He rarely turned on his airconditioner and I prefer it cool. I keep trying to adjust the thermostat but he won't let me.
I read yesterday that when renal cell spreads to the lungs and is metabolic that fatigue is one of the symptoms. When tumors are in a"hypermetabolic" state, tumor cells compete for nutrients, often at the expense of the normal cells' growth. In addition to fatigue, weight loss and decreased appetite are common effects. Ron's appetitie is holding but his weight loss is continuing.
Within the last three days he has started having hip pain. He blamed it on the chair he was sitting on while working on the computer. I have no idea if that is the culprit or not. He was up and down all night last night and very cranky this morning. He said he was going to call the doctor this morning.
What I'm observing as we continue on this journey is that Ron turns away from me when he feels bad. That's hard for me since the mother in me wants to comfort him and yet that's not want he needs or wants. I just hope he doesn't shut me out all together or if he does that I will be able to handle it. I have felt disconnected ever since the surgery. He's really distant. Not in a mean way or anything just that he is somewhere else in his head. I tend to ask too many questions, like, "Are you OK?" or "Do you need anything?" all of which seem to irritate him.
So, I still have some work to do to perfect my caregiving skills!
Today is the first time Ron has ever said he's worried. For the past 3 days he has been so fatigued he's hardly talking. He told me last night that he is more fatigued now than he was the day after surgery. He's still losing weight and gets more tired each day. I have to admit I'm really worried too. If he's this tired now what will he feel like by the time we take the trip to Richmond, VA. It's isn't until the 19th of May but the trip is centered around watching his grandson play lacrosse in a tournament all weekend. I'm just afraid it will be too much for Ron and that he will push himself too hard. But, just as I write that I know I have to let him decide what he wants to do. This trip may be the last time he has the opportunity to see his grandson play or even see his daughter so I have to chill out and let him run his own show.
Had I known how stressful it would be to have even a small backyard wedding I would have suggested going to the courthouse and calling done. My gosh, I've never stressed out so much over anything in my life. I have discovered I'm completely stupid when it comes to planning a party! Ignorant to the bone! I just want to have a good time and enjoy the moment and all I'm doing is fretting and worrying about stuff that doesn't matter. GET A GRIP!
The wind has been blowing 60 mph over the weekend so of course I've worried about wind! Did I forget that I live in Oklahoma....where the wind comes sweeping down the plain?
Then I threw in the possibility of rain. Because of course I expect the drought to be broken with a torrential cloud burst on the 7th of May.
OR.....the temperature will be a blazing 105 some kind of record breaking high temperature for the 7th of May!
I'm freaking out...........................................I need a Valium!
I sure didn't want to come back to work yesterday. I was enjoying my time with Ron. He's still doing great. He got the pain bag removed yesterday and other than bleeding like a stuck pig it went fine. He goes back to get the staples removed Monday.
We still haven't finalized plans with the church yet but hopefully today. Ron wants to put together a list of people to invite but I keep saying, "No one wants to come watch a couple of old people get married." I'm just not good with being the center of attention. Makes me really uncomfortable. I may have to suck it up and just do it for his sake. Gad......I'll probably have to wear a dress! I ordered one but I haven't even tried it on yet because I'm terrified it will look horrible on me. Not to mention my daughter had a very (cold) reaction to it. Why are women so hard on themselves? I know that Ron thinks I'm beautiful just the way I am and that is all that matters! Of course he is still adjusting to his bifocals but who cares?
We've set the date, May 7th! We are getting married at 10:30 am in the church followed by a backyard reception at my daughter's house. We picked May 7th because Ron has his next PET scan on the 17th and we want 2 weeks of blissful ignorance to just enjoy ourselves. I didn't want the cloud of whatever news we may get to ruin our wedding. So May 7th it is! I don't have much time to get things going but my daughters will do most of the work. Hooray for daughters!
Well, the ole kidney kicked into gear and everything is perkin as it should. I brought Ron home from the hospital this afternoon and he's resting comfortably in the recliner with a baseball game playing on the radio.
Wow, modern medicine truly is a marvel when everything goes as planned. I remember when a surgery like this would have kept a patient in the hospital a week. With the pain bag that Ron is wearing a steady application of anesthetic is going directly to the incision keeping it numb. He has felt absolutely no pain what so ever. It will probably run out of medicine tomorrow and he could start having some discomfort but he didn't the last time so maybe he won't this time either. I asked the RN about this wonder gadget and she told me that very few doctors use them. That doesn't make sense. I can't imagine not using something that works so well.
Prayers have gotten us through yet another ordeal. The surgery is over and Ron is doing well tonight. It was a long surgery and the surgeon said "It was scary" but the artery held and there was no excessive bleeding. The doctor didn't say whether he got it all but I believe he definitely hopes he did. The only problem Ron is having now is getting his one and only kidney to start functioning again. They are trying to kick start it. They will take action tomorrow if it hasn't started on its own.
I can't believe we may be back in surgery within 2 months. All signs are indicating the cancer has spread to his lung. The excessive weight loss is the biggest indicator. Now the question is whether they will still recommend surgery or not. If only one spot has grown it will be surgery but if the other 4 spots have grown as well then the oncologist said they won't operate. It would be a shame that he had to go through this operation but maybe it will buy time.
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We did have a lighter moment yesterday in the pre-op. Ron was very anxious and I was trying to lighten the mood so I asked him to practice our wedding vows. I gave him my ring and made him put in on my finger. He did and started saying his vows....."I Ron, take you Danise...as my "awful" wedded wife. "AWFUL?" I asked while giving the patient a piercing evil eye. He busted out laughing. Now....a little information....Ron is a bit tongue tied (literally) with a slight speech impediment. Everytime he gets tongue tied I offer to clip that little bit of skin tying his tongue down. It's a running joke with us. Of course he refuses my offer of assistance. So, I told him that when he says the ring vows I will have a tiny pair of scissors ready just in case. I think he is terrified! Anyway, he got so tickled in the pre-op we both started laughing until we had tears running down our faces.
So, now I am loving referred to as his soon to be "awful" wedded wife!
Thank you all for your prayers and good wishes! Once again faith and prayers have brought us through once more.
I know I've mentioned it before but I have a little house. I'm not complaining just stating a fact. It has always served me well and though the rooms are small there was room for all. Just how small it is has become more and more apparent since the 6'2" giant moved in. We decided we needed to get a desk so I found just the right petite sized desk that would fit in the tiny spare bedroom....then I found the right petite sized bookshelf for the same tiny spare room. After Ron finished asembling the furniture in the petite sized living room he suddenly stated, "I feel like I'm living in the home of the 7-dwarfs." Poor Guy! He just barely fits at the desk. I told him to write "short" letters.
Only 3 days left before surgery. We've got our ducks in line and we are ready to go. I'll sure be glad when it is over and I can see him safe and sound in his room.
You Know What They Say About Fools...
- It's better to keep your mouth shut and be thought a fool than to open it and leave no doubt. --Mark Twain
- However big the fool, there is always a bigger fool to admire him. -- Nicolas Boileau-Despréaux
- [Politicians] never open their mouths without subtracting from the sum of human knowledge. -- Thomas Reed
- He who lives without folly isn't so wise as he thinks. -- François, Duc de La Rochefoucauld
- The ultimate result of shielding men from the effects of folly, is to fill the world with fools. -- Herbert Spencer
- Sometimes one likes foolish people for their folly, better than wise people for their wisdom. -- Elizabeth Gaskell
- Looking foolish does the spirit good. -- John Updike
- Let us be thankful for the fools. But for them the rest of us could not succeed. -- Mark Twain
- A fool sees not the same tree that a wise man sees. -- William Blake
- A fool must now and then be right by chance. -- Cowper
- It is better to be a fool than to be dead. -- Stevenson
- The first of April is the day we remember what we are the other 364 days of the year. -- Mark Twain