Home Again

I picked Kris up yesterday and he was so happy - hugged all the carepartners and owners and away we went.  He said "drive slow so I can look", he indeed seem to be looking at a strange new world but now and then would see something that he remembered and comment on it.  We decided on Arby's drive-through and went to his old/new home.  The dogs were gated so as not to scare him,,, Katie was so excited she about jumped over the couch and Abby just whined and wagged.  He patted them but then just walked back to his recliner (his comfort place).  He did eat one sandwich (previously he would have eaten 3 :), potato cakes, applesauce and 3 peanut butter cookies.

I don't want to sound negative but I want to write about what is going on so other caretakers can take note... I expected (as always) that things would be better for him, and selfishlessly for me.  I am realizing another phase of Dementia, more decline at a whole different level.  After lunch Kris then realized he was not where he was used to being - he paced and cried and the only comfort I could give him was to hold him as words are not comprehended at this level... he just needs to know he is safe - I don't think even emotions are important, well I should say loving emotions; he always has and continues to pick up on frustration, impatience, or anger.  That is one thing i was most impressed about with most of the carepartners is they were as patient as patient could be - i am sure it is not always like that, everyone has a patient level.  So, again, the best i can do is hold his hand, hug him, speak softly, and change the subject when he is sad - food is a good option or changing where he is sitting sometimes works.  Aspen House had more pacing-space which was a plus :).  I have all doors to outside and downstairs locked and doctor said to gate and put orange or yellow tape across the stairs going up - it worked!  He hasn't even asked about going up.  As I was bringing his things in from the car he did get out on the front step a couple of times but went back in to the house, except when he wanted to come help and instead of going down the front two steps, he went off the side :|,,, he caught himself thank God but it scared him, scared both of us.  Now he says "can't go down there".   He is still resistant to some things, but have also learned that waiting a couple of minutes and going back with the same request will most often give better results - I think he must need that time to process the first question.  Finally to get him in a different mood, we went to get gas in the car... again, when I looked at him he seemed so lost which i guess he is. 

Supper (dinner for those not from western Kansas :) - i had made notes of all the meals he did eat and one of them was pulled BBQ beef with mashed sweet potatoes and so i made it, and so he did not eat it (again NOTHING is concrete in the world of dementia/alzheimers); ate so cheese and went to sleep and slept until about 4 a.m. in the recliner and then moved to the bed for a little while. 

This morning has been an adjustment for both of us.  For those who have asked me "do you think you can do this?" and I answered "Yes", I would like to change my response to "I hope I can".   He eats in little phases, this a.m. two bowls of fruit salad, later 1 piece of bacon (it was too crispy,, guess it's good he is still picky about his food :P ), orange juice, V8 Juice (there's the veggies) and after much-ado, went to sleep about 11:30.  Have decided not to cook like i tried to do in the past, but buy some frozen dinners that he likes, then i don't waste my non-talent and if he isn't hungry, nothing lost.  Will keep cottage cheese, jello, fruit and veggies on hand plus sweets.. okay, that boring part is done. sorry.

I will end in saying that I don't know what tomorrow will bring, over even this afternoon - we will just keep trying and now I know what the experts all say is true.  How can that be? :)  

I love reading Jesus Calling and the scriptures (if you haven't noticed ),  but get this devotional for today: "Your gravest danger is worrying about tomorrow.  If you try to carry tomorrow's burdens today, you will stagger under the load and eventually fall flat.  You must discipline yourself to live within the boundaries of today  It is in the present moment that I walk close to you, helping you carry your burdens..."  Read Psalm 73:23

Well, that's it for now.... must continue shopping for home health care assistance.  God Bless!

Met with the doctor this morning - Kris is complaining of great pain, at first we couldn't figure out if it was his back or not, it was not his back but another issue which is being treated.  Dr also said he had received the first results from the blood test for Wilson's Disease and all was normal, they are waiting for the 'copper' results and will let me know as soon as it comes in; he is doubtful that anything will turn up but wanted to make sure and I agree.  This doctor will also be following Kris here at home and for that I am grateful.  Kris didn't eat breakfast but did eat a good lunch.  Due to some unforeseen circumstances Kris will be coming home tomorrow!  Yeah....  So will close for now so i can get things done tonight.  Thank you all for your thoughts and prayers.  Will keep the blog going but maybe not as often :) 

Another fast day - and cold  - and windy.  I took Kris a surprise today, Ryan was able to visit his Dad and oh how happy Kris was!  He cried and hugged Ryan, he couldn't believe his eyes when he saw Ryan standing there.  Ryan has grown at least a foot, is growing into a very handsome young man (like his father) - he is going through rough times but knows what he must do to make it work.  We took Sonic for lunch and Kris ate 1.5 hot dogs, some onion rings, cherry limeade, and a piece of pumpkin pie (thank you Sarah Lee :P); hope this hunger continues as i said yesterday he has lost quite a bit of weight.   One thing I have noticed lately is that Kris will look at me or someone else and it is as if he is looking right through me/us.. i often quietly ask him "where are you right now?"    I pray it is a peaceful beautiful place...

We will meet with the doctor tomorrow and  will continue to care for Kris upon return home - that is a great comfort to me as he knows Kris and I like the way he thinks about treatment and meds.  Kris will be coming home this Friday.. I think I have everything ready.   Home care is still in the works - it is quite a process just like everything else.  The care partners said to give Kris at least a week to transition into being home and then he will probably be more accepting of another care partner (cross your fingers).  I have to be honest in saying that I am somewhat nervous - I don't know why or what of, not sure if it is a anticipatory nervous or what... but i am sure on Friday all will fall into place.

My family has had a couple of difficult turns this week - prayers are with nephew Clint and Luci and baby boy; and cousin, Melody Davis and family.    From my favorite devotional Jesus Calling,  "My loving Presence is sufficient to carry you through each day." 

Kris had his blood test done on Friday, he did great!  We will have results no later than Tuesday.  He really enjoyed the drive to Fort Collins and pointed out many areas that he recognized.  The much anticipated lunch at Schlotsky's was a learning experience - Kris went in with me but after a couple of minutes trying to get him to sit at a table and realizing that he is not able to process the action without alot of concentration, we decided to go back to the car which was the same process of trying to get him into the car... mission accomplished but it was very frustrating for him.  I ordered the sandwiches and we ate in the car - he ate about half and then was ready to leave.  Another thing I realized - is that when he has to use the men's room I have to go in with him.  I have decided to make a sign to post on the door so some unsuspecting male will not be surprised by my presence (any other ideas?).  Our eating out days are probably limited,, which means I will have to cook more (any ideas? :P)  When we arrived back at Aspen House he had the same reaction as last week - fear and sadness that I was taking him somewhere else again.  Thank goodness it was cold and windy and his fear turned to wanting to be inside and warm... where he was greeted with open arms and he was happy to be home... not so happy that I was leaving but he continued on like a true warrior.  The house is about ready for his return this next Friday (and yes, I know that many of you are worried about this change, but until another time, we all have to trust that this is what I need and want to do.)  

Today he was happy to see me in addition to his niece Trista, her husband Ed and daughters Marissa, Jami and Britta who stopped by for a few minutes.  He is still not eating and has lost weight and inches - a new belt and jeans are forthcoming... maybe my home cooking will fatten him up (ha!).  Today he only ate 1/2 cup cottage cheese and a coke.   He took a good long nap in his bed for several hours today which is good.   God Bless!

Today Kris was a little more like himself, happy to see me with a smile and tears.  We will go to Fort Collins tomorrow to have the blood test done for Wilson's Disease - wish us luck that he will be okay getting it done; I have bribed him with lunch at Schlotsky's (one of his favorites).  He at bacon and banana for breakfast and cottage cheese for lunch and nothing for supper - they will tempt him with ice cream again tonight.  As wonderful as the caregivers are, it is still somewhat depressing and I watch him watching... or it could be my perception as i really can't follow the dots to connect the lines.  Back to the caregivers, I really can't say enough about them and their patience and caring, it is amazing and I thank God (and hope you will to), that there are people in the world that love this kind of work and it shows with each gentle touch and smile.  This is a picture taken yesterday of Kris and Rosie (such a cutie and she just loves Kris,, they all do.)  

On a lighter note, I had to buy a new vacuum yesterday - did you know they don't have sweepers with bags anymore?  They are some difficult intriguing wind tunnel thing and is difficult for old dogs to learn the new tricks :)   Just cleaning the living room I had to empty it 3 times,,, you would not believe it,,, i could have made a little pillow (DISGUSTING!!!!)   Have been watching the night skies and see that Orion is moving more to the north now, soon he will be hidden until next winter... isn't life incredible?   ... I pray the Lord to guide our way.

http://en.wikipedia.org/wiki/Wilson's_disease  Many have asked what Wilson's Disease is - here is the link; it is the absorption of copper in the blood stream which can cause liver disease and/or neurological issues.  They say it's a long shot, but even a long shot is worth the taking.. being an All American basketball player I think Kris would agree with that :).   Nothing really new - he is eating very little, is starting to sleep more and more during the day.  He didn't have much to visit about today, seemed tired.  Guess that is it dear friends... thanks for your thoughts and prayers.

Not sure what day this is, I think Tuesday.  Today was the first day since my visits began that I didn't see Kris - a sinus infection got me down but just for one day.    The doctor said they will schedule the blood test for Wilson's Disease this week if possible, has to be done at a special lab in Fort Collins - this would be a huge thing in care (medication wise) for whatever is going on with Kris, or at least part of the process.   Kris' son, Ryan, is planning a visit this week - hopefully, that will work out for both of them.  Kris has been eating a little better and Monday we actually went for a drive around Loveland and had Subway for lunch while watching the frozen water at Lake Loveland :).  Kris enjoyed the drive, but when we arrived back at Aspen House he broke down thinking I was taking him to another hospital ;(, finally the door opened and there was one of his favorite caregivers, Julie.  He cried and opened his arms, hugged her and said how happy he was.  It was interesting to watch, so childlike in his emotions and reactions... actually walked right past me as if I weren't there :), it was good to see him happy and laughing.  He is still not sleeping in his bed, but will nap at times there, sleeps in the recliner at night.  He seems most at peace just sitting on a couch watching everyone or walking around the different 'neighborhoods' as if looking for a friendly face.  More and more it seems he goes somewhere else, somewhere I can't connect with... I hope it is a peaceful beautiful place.  Good news is that Kris is now on only one medication for his thyroid and OTC pain relievers when needed!  I guess maybe some of them were needed for part of this journey, but I am glad they are gone at least for now.     I am looking forward to seeing him tomorrow, especially after watching The Notebook last night with my sister, Ghoni :(  

Katie, our youngest dog had a couple of her stitches open this morning in the midst of everything, the vet had me take her in and she had to redo some things and restitch,,, possibility of a quick spreading type of cancer - we will watch and pray pray pray.  I know she will be okay, she promised to grow old with me. 

Sorry for the rambling.... From Jesus Calling, "I am with you.  These four words are like a safety net, protecting you....."

Saturday's visit was a little rough, Kris had a bad afternoon, BUT the good news was that after a while of settling down he and I actually danced a little - to my humming a Christmas song.  It was so wonderful, a great memory for me.  This picture was from Valentine's Day two years ago - was taken in Estes Park,, had a great day.    Hope you all have a great day too.

Well, I am going to tell a couple of stories before I post the update.  Here is Kate after her surgery and the Kone of Shame she has to wear, poor little thing.  Today I went out early to pick up a month's worth of dog-do-do (4 bags full - thought i would share that important detail) :|  It was actually good to be doing something constructive plus being outside.  This has always been Kris' job so it was a reflective chore of sorts. 

Yesterday was Valentine's Day as you know.  The visit with Kris was bittersweet.  I took a card and box of his favorite chocolates - Russell Stover's turtles.  He looked at the envelope and was not interested in the candy, maybe today.  At times like these you reflect on holidays past and so i remembered all the past Valentine's Days when Kris would have a dozen roses, chocolates and a stuffed animal waiting for me or delivered to the office - as much as I loved them, the next year I would say "now don't spend alot, just get the flowers from the grocery store".... why did i do that?  I guess I didn't think that one day he wouldn't remember what Valentine's Day even is. 

So, yesterday was the first day without the pain med he had been taking, they will not start a new medication until Tuesday.  He was very weepy but tired, hadn't eat breakfast, and was sleeping when I left at 12:30 to pickup Kate.  As of last night he had not eaten supper, so will see what i can take him today that might entice him to eat.  He wants to come home in the worst way and in time we will try it to see how things go.  In the meantime, I am reminded daily (if not hourly), that I am not in control - "... the safest place to be is in My will."  amen

The last three days have been rough for Kris - he is still not eating much and is still not sleeping in his bed except for short (very short) naps when I am there; well, i take that back one night he slept in bed for about 3 hours.  He is able to use a heating pad so i think that is helping his back pain.  He has been very weepy (and who can blame him).  His feet are both swelling again, probably from not keeping them propped up,, he spends most of his time pacing around the facility and looking....  The good news is he has become quite fond of the caregivers there and often hugs them and smiles and teases his favorite ones.  It was hard to leave tonight for some reason.  I don't seem to be getting much done, maybe tomorrow.    Katie, our youngest dog, has a malignant growth on her front right leg, she will have surgery to remove it on Friday :|   Well, God bless everyone...

Yesterday was a long day of sorts.  Kris barely ate anything, but he did eat some green grapes I took and some ice cream that evening.  He was happy to see me as always, but time is not measureable for Kris so he isn't sure if i was there an hour ago, a day ago or a week ago.  We sat and i read "Illusions" for awhile, the looked at the lunch plate, then napped for awhile.  His back is still very painful, for my oil friends, i am rubbing his spinal cord with Panway and the neck with Peace & Calming.  Ed, Trista and girls were here this weekend finishing up the renovations - it was good to have some lively company :). 
Sunday:  Looked like snow this morning, so i left about 9:00.  He fell again this morning before I arrived, must have been stretching and fell backwards - nothing hurt that they could find :|  Arrived with Kris and his plate of french toast at the table, he finally ate a few bites; then fruit jello for mid-morning which he ate all of; and ate most of his lunch,, yeah!  Spent most of the time on the couch as he napped off and on - rubbed his back with oils again and he laid down on the heating pad around 1:30,,, zonked out as they said he hadn't slept much the night before.  Stay warm everyone, thank you for thoughts and prayers.
  and comforting thought from Jesus Calling, "nothing that you do or don't do can separate you from My Presence."  Peace be with you...

Kris was playing balloon volleyball when i walked in, he didn't notice me until i sat behind him and spoke his name and then touched his shoulder, he stood up but did not turn in my direction... we were once again very happy to see one another and sat on the couch and watched the others - he kept reaching up when the ball and watched intently,, patty my hand in between times.  He ate two big pieces of meatloaf but that is about it, no breakfast, no supper but did have two protein bars and banana bread that I had left after the supper plates were gone. Had a good nap and is watching a movie.  I hope he sleeps in his bed tonight, or at least i hope he sleeps.  I am tired today for some reason.. old age I suppose:)  So dear friends, I pray you all have a good night.  thanks for the reminder Shari,, "Be still, and know that I am God."

Kris was not as perky today, however he had been up since about 3 a.m.  He was a little upset about where I had been since yesterday but the happiness overcame.  We spent most of the morning sitting on the couch and visiting and hugging :), one of the gentleman in Kris' area said "stop that nonsense" and smiled.  He didn't eat well today, maybe tonight.  We laid down for a little nap on 'his bed' and it was nice to see him relax and rest.  Took alot of treats but mostly he was interested in the clementines.  About 3:00 we walked to keep his mind off me leaving, after a few minutes of visiting with others and checking the offices, I think he forgot i was even there.  It is always hard to leave, but joyful to arrive.  From Jesus Calling, "Come to Me and rest."   I pray you always have a peaceful night.

February 5, 2014

My new blog, thanks Trudy for setting this up for me.  Today I was able to visit Kris for the first time in 6 days!  I was supposed to wait at least 7 days so he could get used to having others help him, trust and let the new caretakers get to know him... this was the best I could do.  He has not been eating or sleeping well, nor taking medications which were imperative to his moods and ability to rest, etc.  After visiting with the doctor, we both agreed less is best and now have him down to 3 medications instead of 9 or 10.  So the visit:  he was sleeping when I got there, touched his arm lightly and said "you have a visitor",,, oh how I wish I could have captured the look on his beautiful face!  He started crying and so did I,,, he said "I thought you were gone forever."  He looked thin and tired but his blue eyes were so happy.  We went to his room (which I don't believe he knew was his room) and sat on the bed, ate a clementine, put some things away, walked around the facility (his steps are very shuffled and short, he seems tentative at times to make the next step - but does), and then it was lunchtime.  He had not eaten a full meal since his arrival 6 days ago, but he sat down and ate every bite, plus dessert and a Coke!  We cleaned up, fixed a couple of rough places on his feet, walked a little and then the terrible back pain got him down... we went to his 'new' room, he laid down, and went to sleep.  Kissed him goodbye with a heartfelt "I will see you tomorrow", "maybe tonight" he replied with a smile.  Felt like leaving your child in someone else's care... but I was much relieved after seeing him, holding his hand and watching him interact with others... he is so charming.  Then back home, the quiet empty place called home.  Thank God Abby and Kate (our dogs) are here and my sister Ghoni is still staying with us... there is just something missing without Kris here.  I will close my new blog for the day with a prayer of thanksgiving, from Jesus Calling "The only thing you can grasp without damaging your soul is My hand."

Just before I hit 'publish' (old dogs and new tricks :( ), the caretaker called and Kris had just fallen - no one saw him fall so not sure except it doesn't look like he was hurt, except for his back probably.  Prayers Kris to keep you safe.