january joys

at the begining of the year (or close to it) i wrote a post about looking for joyful moments in our day and writing them down to read at a later time. i had also asked to be held accountable for those moments mainly because i don't want to look back and only remember the difficulty of this journey.  well, anita, my sister-in-law, suggested that i post my top 10 joyful moments each month even if some moments were repeated.  good idea! i didn't realize what a struggle that was going to be....not to look for joyful moments but to remember to write them down then to post about them. i was also determined not to have this fall to the wayside like a new year resolution. hopefully the following months won't have such a long introduction...anyway here are 10 of our joyful moments in no particular order:

1. January 1st gabriella was SICK and needed to be taken to urgent care (not joyful) but the joyful moment was calling matthew and becee for help and becee sat with dave all day while i took gabriella to urgent care then to get her medication. she gave up a day that she could have spent with matthew and seeley to sit and take care of dave and they enjoyed their time together watching movies and talking!!!!!!!!!!!!! what a relief for me!!!!!!!!!
2. SUNSHINE!!!!
3. Dave remembered my name and was able to say it!!
4. Dave helped with dishes by rinsing while i washed!!!!!!!!!
5. Remembered my name and said it!!!!!!!!!!!!!!!
6. Stephanie came into town and spent the day with us!!!!!!!!!!!
7. Kim McIntire and JoBeth Ellis brought and ate lunch with us!!!!!!
8. Loved and supported by my kids: matthew & becee  drove me & dave up to kansas city to see my sister who was in the icu. while at the hospital stephanie & becee sat with dave at linda's house. gabriella stayed behind and did some grocery shopping for me.
9. Remembered my name!!!
10. Charles Kent sat with dave while Ann Kent and I went to Hobby Lobby to "window shop"!!

i think i am going to enjoy looking back every month. even if some of the joy was surrounded by not such a joyful moment i love seeing how much love and support we are receiving!!!

 monica

the unexpected

we all know there are unexpectancies (is that a word?)  in life and those of us who like to think that we are equipped and ready some how for that late night emergency call or an accident or whatever unexpected issue arises we realize we are not and never have been prepared. for example a couple weeks ago i received a call from one of my sisters that another one of my sisters was in the icu and the prognosis was poor. i was totally unprepared for that kind of call and while i tried to  decide how i felt about that i was also trying to plan in my head how to get to kansas city and what about dave. well things worked out and with the help of all my kids i made the trip to see my sister and dave survived the trip. it did take him all week to "catch up on his rest" but he was fine.

the most recent unexpected change has been in dave's behavior.  i have been taking dave to an alzheimer's facility for day respite. it has been really nice to have him some place that he is familiar with and having activities that are at his level. with my sister still in the hospital and knowing that eventually the weather was going to get bad again i had a desire to make one more trip to kansas city but i knew dave couldn't make another quick trip and this time i would not have anyone going with me to take care of dave so i made the big step and asked the facility if they had a male bed open for dave to spend at least the weekend.

it turned out to be a disaster. fist, other things came up and i was not able to make my trip then the phone calls started. phone calls from the facility that dave was agitated and anxious and they were  hoping that if he talked with me he would calm down. the entire time dave was there he was agitated and agressive and uncooperative. the sweet, kind, laid back, thoughtful man that i knew and married turned into that terrible alzheimer's person we have all heard about. it is said that as alzheimer's progresses personality changes occur but for someone who was so easy going and even tempered i never expected him to change. 

what triggered his change? i can only guess that maybe being out of his usual environment. he has had a fear that i would one day take him to the arbors and leave him but before we went he repeated that he knew it was only for a few days and he knew i wanted to visit my sister in kansas city and he could not make the trip. maybe the change of staff. i am not sure. but saturday night at 12:30 i was driving to the facility to pick him up. he was indeed agitated at the worker but when i called his name, held his hand, looked him the eye and calmly talked with him he calmed back down. he was upset that "they took all my money". there was no money in fact i made sure he did not take his wallet for fear it would be lost. so i did what i have learned and told him a white Alzheimer's lie. i said,"i am sorry about that and i will call them in the morning and find out about your money, but right now lets go home because it is late." home we went. all the way home he talked about "the money" and i just listened. when we arrived home i offered him a snack which he happily ate, gave him a shower and dressed him for bed. he fell asleep instantly. 

the next day he forgot about the money. he did a lot of sleeping but later in the day he cried because he had a moment of clarity and remembered that he was not very nice to the workers and he didn't understand why. 

on monday i talked with the facility and was told he was uncooperative the whole time he was there but saturday was the worst. he tried climbing out the windows, walking out the doors but they are both locked and alarmed. he threw a potted plant at a window, messed with the fire extinguishers and set off the fire alarm causing the buildings to be evacuated and the fire department to show up. what a mess. he had refused showers and the changing of his cloths. who was this man?  i guess its the new dave at least that is what i thought. since he has been home i have not had any issues. he takes his medication,showers, gets dressed all without incident. he did tell me "i want to just be with you." 

i know people mean well when they say i need a break. i know they mean well when they say you need to try an overnight stay again you need the break. but right now thinking about another overnight respite is too stressful. i know that i will worry and wait for the phone call and how is that relaxing? will i ever try it again? not in the near future. yes i know i need the break and i know there are things coming up that dave will not be able to do so i will need to find some place or someone else to take care of him at night but right now i am just trying to deal with this unexpected change. please do not tell me how much of a break i need because believe me i KNOW how much i need the break but all this reminding is causing more stress than the stress that i already have from taking daily care of dave.

whats next? who knows. it is said - if you see one alzheimer's patient then you've seen one alzheimer's patient-meaning every alzheimer's patient is different. there is no way to plan because anything else that happens falls in that unexpected category because who would have guessed the change in dave that night. not every alzheimer's person ends up in a nursing home, bed ridden, unable to talk, whatever people think of when they hear "alzheimer's" even those situations are unexpectant. so i research and try to brace myself for whatever unexpected occurance comes our way.

monica