a journey's end

july 7, 2014 at 12:18 am dave's journey came to a quiet end. many tears were shed even with the knowledge that he was no longer suffering. i was told that he wasn't experiencing death, he was experiencing new life! (only those of us left behind experienced the death.)

at dave's memorial service you heard of the christ follower and servant in him. today i want to talk about other parts of dave.

 he loved kids! actually i think he just loved people as he never knew a stranger and always believed in the goodness in people. everyone knew how laid back he was and that was reflected in how he supervised the people under him when he was the head building engineer for the school district and how he interacted with fellow staff while he worked in the warehouse. he always said if you direct them kindly they are more apt to complete their work more willingly but if he had to raise his voice it had more impact (people were shocked if he was loud). he was the same when it came to the kids. he never judged them but would lovingly and kindly try to guide them and advise them. (the complete opposite of me, i loved my kids but was a bit louder at it than dave.) and when relationships or adventures they tried didn't work out he never said "i told you so." instead he just accepted it and tried to help them on to the next step.

his kindness and gentleness earned him respect from everyone he met. he was an encourager and would be your cheerleader when you took a step toward your dream or made a change in your life. he had the ability to make you believe in yourself as he cheered you on and even when you failed he was there to pick you up and cheer you on to the next thing. he gave you confidence. 

he loved the outdoors. he was a hunter, fisherman, camper and loved hiking. he talked about places he had been like colorado and arizona. he deep sea fished when he lived in california and fished for trout here in missouri. he taught his sons how to fish and hunt and loved sharing those times with them when he could when they became adults. he taught gabriella how to fish and when we would all go to roaring river to fish he spent more time taking the fish off the hook than fishing himself but he said he didn't mind because he loved seeing her enjoying herself.  when i would go back to camp to cook breakfast dave would stay and fish and would bring back so many with a huge smile! he loved outdoors and loved sharing it starting with his sons at a young age and continued with anyone who was willing. 

playing games at matt's

he loved family gatherings. he loved it when the kids came over for a barbeque or weekend dinner. he loved how all the sounds filled the house with laughter. his favorite part was afterwards when we would play games! our two favorite were taboo and uno although we did play battle of the sexes once which all the guys said was rigged so the women always won. ha! scrabble was another favorite and he always killed at that game! everyone's goal was to beat him but that was rare! he loved challenges.

life wasn't always fun. he would hurt with me when my relationships with my kids or family was rocky. there was a hurt in his heart that he felt would never heal and that was his relationship with his own sons.  he loved them dearly and prayed every single day for them and for himself in regards to relationships. for whatever reason he never felt that things were ever right, maybe too much baggage or interference. i don't know but i tried at my end but knew when i pushed too hard because he would grow silent and shed so many tears. i am not sure if people realized how deeply dave felt hurt and pain. he was so good at never revealing his true inner being to others except me. what an honor that was to know how much he loved and trusted me and i was the same with him. the writing of this blog is the closest either one of us has come to revealing who we are to people outside of each other. i know we have exposed a piece of ourselves here and there with certain people but the deep stuff was reserved for each other only.

his love for the kids was multiplied when grandkids came into the picture! there was nothing better for him than to hear "paw paw!".  the most boastful he ever was was when he would talk about his grandkids. he would beam when seeley came over  and would take his hand and say "mere paw paw"! he loved all the hugs and kisses.

4th of july in kansas city.

 dave loved the fourth of july! he was like a kid at christmas when it came to buying fireworks and loved setting them off. i remember one of the first fourth of julys we spent together with the boys, they set off so many fireworks there was a huge pile of firework debris in the street and smoky!

dave was an artist. he loved painting and while participating in one of the alzheimer's programs made some bowls out of clay. he never felt that he was "good" at painting in the traditional fashion but he loved it and even sold a couple of his paintings through the alzheimer's assoc..



    

dave loved life! even in his final weeks he gave joy to others. he recognized us and freely gave hugs and kisses and even joked and smiled! he held on so long. my heart aches like never before and i can't hardly imagine what will be next.






                                        i love him so much and miss holding hands.

monica

our new normal

after a very rough start i think dave is finally getting settled into his "new residence".  this part of the journey i had not planned on and continue to have doubts about the decisions i have made. i had promised dave that he would not be placed in a nursing home and i would do whatever i had to do to keep him home. i had no idea at the time the toll it would take on all of us. all the books i read, the blogs and support groups i became a part of always talked about just enjoying your moments with your loved one but i found myself not enjoying very many of those moments. i feel that the day to day issues of taking care of our home and keeping gabriella on track while she was in school and caring for dave left me so drained that i was not thinking clearly most times and caused unnecessary stress on dave.

if i had followed dave's lead we would not have gone through so much turmoil. at one point he had said "its time for me to live some place else."  instead of listening to him i was selfish and self-centered and thought it was about me and took it as him saying i was not taking good enough care of him when now i realize he knew times were going to get hard and that he did not want me going through it, he knew my life would need to go on and his life was going more inward and harder. dave had always been the leader of our home and i trusted in him and knew he always prayed about the decisions that needed to be made so why did i not trust him this time? maybe i thought it was because he could not articulate his prayers anymore or that i knew better but i truly believe it had more to do with not wanting to let go. i truly felt that the longer he stayed at home the longer we could keep alzheimer's at bay but the reality is he was progressing at a fast speed no matter where he was going to live.

sharing some freshly picked blue berries

    so now he is living elsewhere. i still have a hard time        accepting it and liking it but i guess they are doing okay with his care. i am blessed to have support from my care group and friends. i was going everyday to be with dave but now i have all of them taking days so i can now take some time for myself and gabriella.  now caring for dave is just actually enjoying my visits with him. at first it was hard because there were medication and sleep issues but now those have been addressed. hospice is caring for dave most times, not because he is going to pass soon but because he needs more one on one care that the nursing home is unable to provide. what a blessing hospice is!! they take care of so many things from medication issues to his personal care!  

an afternoon stroll on father's day

we still celebrate with dave.  father's day came and we had planned a visit with cupcakes and freshly picked blue berries and whatever else dave wanted to do.  we were happy that he wanted to be outside enjoying the sunshine and walking. he was alert and talkative and knew who we were. the aides all state how his eyes light up when i visit. makes me happy because even though he does not know my name he knows who i am. he feels loved and safe with me and he does remember all kinds of things we talk about especially the kids! its funny how he remembers certain things, on one visit he told gabriella "you don't talk much!" and he said it with a big smile on his face! he was still teasing her! it made her happy as well because he spoke clearly and his remark reminded her that he still knew her.

a mouth full of cupcake!

i had been told by numerous people that have been through the same process to expect dave to want to leave with me or "act out" when it was time for me to leave. what a blessing that i have not had that experience. only one time did dave tell me not to leave so i stayed with him. he was laying down for a nap and i did my best to lay my head on his chest until he said good-bye.  each visit ends with him saying "i love you!" with a big hug, i guess he knows he is better where he is at and not coming home with us. it makes me sad but it is our new normal.

crossing the threshold

                                                                                                                                   

 is a day permanently etched in my brain. the actions that i took i will always question. this was the week prior to graduation that we were all excited about. this was going to mark the week that gabriella went from high school student to a young adult where all things were possible. i also knew that it would be a week that could cause some issues with dave as there would be lots of activity and people coming in from out of town. i had a plan in my mind and felt it was doable and if issues arose i was actually ready.

gabriella on graduation -magna cum laude.

i had already put into action a caregiver that was coming two times per week for three hours. i felt that during this busy week there would be the constant presence of someone that dave could count on being part of his routine. the caregiver was so good for and with dave. she was a soft spoken person that had lots of patience. dave had also reached the point i actually never thought we would have, he was refusing his meds, was down to eating one meal a day (he would sometimes snack but didn't want a full meal) and was wanting to walk all the time, i mean ALL the time. i had also noted that his urine was getting dark in color but he denied any pain or discomfort when urinating.  it had only been a few days that all this was going on but on that morning of may 13th he wasn't wanting to get out of bed, was having hallucinations and his urine was so very dark.  anita had already come into town and she voiced what i knew to do....call the dr. part of me didn't really want to call the dr because i was afraid he would tell me to take dave to the er (THE WORST PLACE FOR AN ALZHEIMER'S PERSON). unfortunately that is what he said and although i had no desire to take him there all i could think about was what if he gets really sick during graduation time? what if i am not home with him and he gets really sick or what if he tried going to the graduation and he got sick. i didn't want him to suffer yet i didn't want to take away from gabriella's big day. i really hate this disease and how it makes you chose between caring for your loved one at the expense of the other loved ones in your life.

against my gut we went to the er, (why didn't the dr just do a ua for urinary tract infection is beyond me).  the thing is, that morning dave took himself to the bathroom, brushed his own teeth, took himself in and out of bed and was talking in complete sensible sentences.  after sitting in the er for almost half a day dave was becoming agitated and aggressive, who wouldn't after sitting in that exam room with no one giving us any info. i called the nurses station numerous times trying to get us out of there but because there were traumas we were placed on the back burner.

what a huge mistake i made. i knew with the flurry of activity that was occurring at home there would be moments of anxiety and agitation with dave. too many changes at once. his excitement of having family in town may have been too much. i can't decide if taking him to the er or continuing with the plan of the graduation party and family coming was the culprit of dave's decline or what. all i know is that i was exhausted and allowed myself to make a decision about dave's future by listening to others. i felt trapped and cornered and like i had no time to make a decision because if i had thought more about it dave would have come home with me instead of being admitted into senior serenity, the locked alzheimer's unit at the hospital.

i hate hospitals, hospital staff/doctors, locked units, and the feeling of losing control but most of all i hate this disease.  dave was given a sandwich, and sprite while in the er and it did make him feel better but he was agitated about not being allowed to walk, that is all he wanted to do and he became more and more agitated when i told him we had to stay in the exam room because there was too much gurney traffic. then there was more assaults with medication, being transferred without me with him to explain what was going on and then the admission process all of which dave did not understand and the constant bombardment of people talking that caused me stress so i can only imagine what dave was going through. all this causing more of a decline and aggression in dave. i should have put a stop to it all and said i am taking him home but i didn't. i was exhausted and everyone else thought they knew better and i allowed them to once again talk me into making decisions that i so regret. i wanted it all to end, i wanted everyone to go home and leave us alone like they have been doing during this journey. i lived it everyday and knew changes were coming but i was preparing for them and setting things in motion on OUR time schedule but once other people became involved all my planning was thrown out the window. i felt betrayed. i am an intelligent woman who has researched and with open eyes getting us prepared but no one listens to me or believes me. even to this day no one believes i know what is happening to dave and that I KNOW DAVE WILL NOT GET BETTER. i am not in denial with this disease but doesn't anyone believe me or hear me?

i know what dave is still capable of doing and yes i know when the disease progresses he will eventually lose some of those abilities. but no one believes that dave was capable of doing some of his own care etc. i know the medication he was on was doing its job so why were there so many medication changes? because the dr making those decisions doesn't believe in some of those meds so they change them causing more distress to dave? what happened to knowing your patient and making decisions based on THEM not some protocol.  why don't they listen to the people who have been doing all the care and knows and understands what is happening?  i felt like i was talking to deaf people or screaming a silent scream because i was not getting any where with anyone! so dave stayed in senior serenity for almost 2 weeks because of "aggression". why don't people who work with alzheimer's understand the disease?

we made the most of the situation and after one week i had a meeting with the doctor. i met with the doctor alone (stephanie went with me to take notes only) because i wanted to hear the doctor without the bombardment of interruptions, challenges and comments of others. i needed to absorb and digest the information to understand what i needed to do. there were others here that wanted to attend the meeting but i really needed to do this alone because after all i am the one who lives this with dave, i am his wife,i am the caregiver. this was about dave not about the rest of us and to my disappointment my decision to go alone was not supported or understood. their reaction just added another situation to deal with that was taking away the attention i needed to help dave. one of the hardest thing to hear was the doctor stating he felt dave has crossed another threshold that would probably be the last one.  he felt dave may actually have lewy body dementia which is a much more progressive dementia especially for someone as young as dave, he felt that dave may not make it to the 3 year mark. 3 year mark, that means months is all that is left since he has already been on this path for 2 1/2 years.

gabriella sharing her graduation with dave at senior serenity.

i was hopeful that after dave's discharge he would be placed in a free standing alzheimer's facility or in the general population of a nursing home. unfortunately we only have one alzheimer's facility in town and dave's bad experience has kept him from ever returning there and due to his "aggression" the general population was not an option so he was placed in the only nursing home that had a male bed in their alzheimer's unit.  that whole transition was a disaster for dave. it ended up with another er visit, more aggression, and more medications. but this time we had an er doctor that turned out to be an advocate for me and dave! he made sure the doctors and nurses would be giving the correct kind of care and not only listened to me but heard me! after a conference call that seemed to last forever dave was transferred back to the nursing home (thank god he was not going back to senior serenity) and he also ordered hospice.

so now hospice is in place to keep track of his meds and other health issues and an aide comes in twice a week for more personal care. what does hospice have to say about dave? well, his weight has dropped quickly and he is not eating much to sustain himself so they agree it will just be a matter of time maybe just weeks. how quickly this time is coming. i thought we would have a longer period of that "in between" time before we had to prepare for the end so now the scramble is on for me to make arrangements. thankfully dave and i talked extensively about what he wanted so now it is just a matter of getting it together. the mourning has already started. it started for me when dave was admitted to senior serenity. when i left there that first night i felt like i had been to a funeral. i guess it was just me finally realizing that the dave i knew was no longer with me.

dave and seeley-seeley's first birthday party!

 monica

its the same old story

when i look back at the start of this "new journey" i see that i was not realistic about what was going to happen. so many thoughts swirl in your head and its hard to figure out what, exactly should you do, what should take priority. of course you think about your loved one that was diagnosed with alzheimer's and your first thoughts, at least for me, was what do i need to do to make dave's life less frustrating. you read books, search on the internet for any tid bit of information that will help you understand what is going on, what to expect as the disease progresses, and the best way to deal with all the inevitable changes.  like anything you are researching you try to tuck into your memory the useful information and throw out the "junk".  but i will tell you no matter how much you think you are prepared you never fully grasp the emotional and mental toll this journey is going to be.

with each new "phase" of the disease you reach back into that file in your brain and pull out the information that will help you make it through with as little stress as possible. you feel relief that some of the information really is helpful. but as i stated before you can never be prepared for the emotional roller coaster.  i didn't realize that as more and more responsibility was piled on i would become a wreck. i thought fear of the unknown would be the worst but i have experienced so much guilt, frustration, envy, anger (lots of that one) and even selfishness.

i get so frustrated and angry. the anger is not at dave the anger is at the disease. i just want to shout "are you kidding me?! i just get used to dave losing another piece of himself when it happens again. why can't this slow down!? no amount of medication is making a difference.  the worst part is that i am finding it more and more difficult to take care of daily task and dave.  i have envy of others who continue on with their life plans. every single day i am reminded of what we have lost. every time i have to make a big decision i get so frustrated and angry then i cry later when i am up all by myself.  i no longer have that partner to help me decide if i made the right financial decision, or if i am being too harsh on gabriella (or not pushing her enough) and i no longer have the partner that i can just talk about nothing with and have him understand. i am tired of repeating myself. i am tired of eating my emotions to spare dave a bad day.  i hate that his emotional being and his day is based on how i feel. i do not want that responsibility any longer.

so there it is, the elephant in the middle of the room. how long do i keep dave at home? am i being selfish when i think about possible placement. what is it going to take? what kinds of things can i do to keep him at home longer? i did say i would not put him in a nursing home at the beginning of this journey but that was before i knew how difficult it would be and how much it would take out of me.
am i failing dave if i place him in a facility? i feel like a selfish failure. i feel weak and incapable. i feel overwhelmed.

i have finally hired an in-home caregiver. she will be here two times a week for 3 hours each time. i picked an agency that has specialized training in the care of alzheimer's.  care for someone with alzheimer's is not the same as caring for someone who is just aging and experiencing the "usual" aging issues. this caregiver not only helps in the care of dave but can help with household task. this was a huge step for me because i am uncomfortable with people in my home. i was not blessed with the gift of hospitality.  i am also not good at asking and utilizing people for help so i hope that i will utilize the caregiver for all that i can. i will find relief 6 hours a week but truthfully its the other 162 hours of the week that i am worried about. there is only so much i can get done while the caregiver is here. i will still have to take dave with me for some grocery store trips and other errands. but truthfully i don't want to, at least not this dave. it has nothing to do with embarrassment or his inability to be gone for hours like he used to be, its the companionship on those trips that i miss the most. we talk less and less to each other.  sometimes i feel keeping dave home is more selfish than placing him. he has told me before that he is tired of trying which i take as him meaning he is tired of trying to be his old self or tired of trying to understand our world as his alzheimer's world becomes larger and larger. so, we will hang on a little longer.

monica

i have not stopped looking at joyful moments in each day i am just finding it difficult to blog my monthly list. i am listing some good moments that have occurred. unfortunately the list gets shorter and shorter. most of the time they are not repeated but still they happened and it was good!

• unbuckled his own seatbelt.
• said my name.
• said 3 complete understandable sentences to the receptionist at the dr's office.
• remembered how to open the car door from the inside.
• rinsed the dishes and placed in dish rack.
• washed himself in the shower.
• changed his cloths himself.

 

when will acceptance happen?

we are so happy that the weather has finally, hopefully turned to consistent warm, sunny days. this is dave's most favorite time of the year. this means days of yard work and sitting in the swing just enjoying the sunshine on our skin and watching the world around us. sunny days and warm temps makes for really good days. we have had a few good days even when the weather was too windy and we couldn't get yard work done.

i wish that i could bottle up whatever it is that makes for good days and then use it like air freshener whenever days are not going so well. despite the good days we have been having i have been so crabby and impatient. our days have been filled with outside chores and dave has been doing so well. he rakes and helps pick up twigs and left over walnuts in the yard. i have started mowing the grass and dave has maybe accepted the fact that he can longer push the mower and will sit on the patio and just watch. what in the world is causing me to be so crabby!? 

things have been going okay with dave. there is no denying that he is progressing. one minute he can accomplish small task, like walking into the kitchen and throwing away his trash and the next minute he has no clue where the kitchen is. when we are outside i have to watch what he is doing and make sure he is not going to wonder off only because he is so busy raking he doesn't notice he is no longer in the yard. when we come home from being out he sometimes starts walking to the neighbors thinking he is going to his own home. he doesn't always remember to flush and will toss his toilet paper in the trash instead of the stool but all of these things did not come as a surprise to me. with all the books i have read, and hearing what others are going through i knew these days would come and yet i get so impatient. 

there are still the everyday ordinary things that need to be done and i find myself unable to organize myself to get them done and still spend time with dave. bills need to be paid, personal care needs to be done, phone calls, meals the list goes on and on. part of my impatience stems from the constant disruptions. with dave's  inability to take himself to the bathroom, i am interrupted numerous times in the middle of doing those daily task. i never realized how many times a person can use the bathroom until i have had to assist him. there are some days showers are not completed until 2:00 in the afternoon and by the time they are done i am exhausted and on occasion still need to do errands for the day and fix lunch. for awhile i was able to get up in the mornings and take my shower and get coffee and breakfast and medications ready before dave was up but that has changed and he is getting up at the same time as i am which has thrown off my schedule.  

not only have i lost my patience on numerous times but dave has really become impatient and self centered. as long as i am giving all of my attention he is happy.  there have been a few occasions that gabriella stayed home with dave while i quickly ran an errand and she tells me that most of the time dave questions her about how long i have been gone and when am i coming home. this makes it hard for her when she is trying to get homework done and trying to occupy his time while i am gone puts her homework schedule late along with her evening routine. (which has had to change to accommodate dave's bedtime routine that constantly changes.)

i miss those early days, and i am not even talking about before the alzheimer's, i mean the early start of this journey. during those times dave was able to do so many things on his own and i didn't hesitate to leave him alone for a short period of time. he was still able to help himself with no problems. i read all the time that once you accept your loved one where they are at it all becomes so much easier and you have joy. well, how do you get that acceptance?  when in this journey do you look at your loved one and say to yourself, "you may not know me or know how to do things anymore but i accept who you are where you are." how do you forget about the old days and accept that your life is forever changed? 

to be so perfectly honest and open most days i struggle with this new dave and i wish for the old dave. even with some respite the majority of time i am with dave alone struggling to get as much done between disruptions as i can and dare i say i have resentment. i hate that there are times i am sure that i have hurt dave's feelings and made him feel inadequate. i hate myself on those days. acceptance is hard when every instant in your day changes. there is no even keel anymore, i mean every minute there is a change. there is nothing about this disease that he has caused and his personality changes are the result of the disease but i am having a hard time seeing the core of dave. without acceptance of who he is at this time i may not ever see his core being and that makes me so sad. i love him so much yet i am struggling with acceptance and struggle with resentment.  i would say that i will be praying about these feelings but honestly i have lost my ability to pray. i know god is still there because i do see the blessings all around me but i just can't seem to pray anymore. 

acceptance will make this disease more bearable but it alludes me. for dave's sake and for my sanity i need to find it. its not always the acceptance of who/where dave is at each moment but i have to accept that its okay if chores are not done and that box of stuff i need to go through will sit in the corner forever. i never used to worry about chores in the past but that was because i knew when push came to shove dave would help out but like everything else those days are gone. 

                                                           monica







 

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

 

sharing another's view point

i had another post in mind to write but i asked and received permission from another caregiver to share with you what he wrote about his journey that he and his family are on with his wife's early onset alzheimer's. it is beautifully written and i can't think of a better analogy that is so easy to visualize. 

"The Sled

January 15, 2014 at 7:58pm

Once upon a time there was a normal family. The man, the woman, and the two children. Like other families, they had a large sled which they pulled up hills, and rode downhill. Upon this sled rode various crates. They had labels, as most crates do. These crates made pulling the sled uphill a task. Not an unbearable task, but a task nevertheless.

They were proud of their sled. It was built very sturdy. Only the finest wood was used, and the runners were made of very strong and resilient steel. The Man took pride in keeping their sled ready and able to carry their load on their daily journey. Daily they left their home to pull the sled. Pulling uphill together took teamwork, and they all did their part. The Children were out to the side of the sled as this was safer. If the sled moved forward to fast, they would be able to jump on top and go for a ride. The couple pulled as one, always aware of the other, keeping a rhythm that they were comfortable with, and got them where they needed to go. As they went on their journey, it was only natural that they saw and accumulated things and memories that were important to them and their children.The things they put in one of the boxes, and the memories were stored in a far more solid, and important crate. They enjoyed the trail they were making. The hills they climbed were at times difficult. But it taught them how to pull together when they needed to, and also the slope downward gave them freedom to ride, enjoy the view, and think and do their separate thinking. One day as the couple were talking about how their children were growing into fine young kids, there appeared a new crate on the sled. It was there.... right in the middle of the sled. It took up space, but no one seemed to want or bring attention to it. After all, it didnt weigh much, and they were too busy with the ups and downs of their journey to think much about it. After one especially busy, hard day, the man noticed his wife was putting her memories into this new box. He didn't ask her why, he was afraid of the answer. He had noticed that his wife, while she was still able to pull with him up the hills, her attention and her gaze kept going to that new  box on the sled. When he finally did ask her  why she was putting her memories into this new box, she just shrugged her shoulders and couldn't explain why. As the days and the time passed, the woman found it harder to keep up with the daily routine of pulling the sled, riding on it, watching the children, all the fun things she had always done. Now it took alot of effort to do these tasks, and she started to forget the reason why they were on this journey in the first place. The man could no longer deny seeing his wife struggle. One day when they had time, they stopped on their journey and asked a very intelligent man about this new box on the sled, and why was his wife having these memories go into this box? The wise man knew the answer. The box is called Alzheimer's. He told the couple that all her memories were being stolen by this box. And as he explained to them, this box will be with them until the journey is over. It will be full of her memories, and she will not get to keep her new memories anymore. Well the man did not want to listen to this anymore. He read about this box, and thought about this box, and surely he could get this box off his sled. Between pulling the sled, trying to make their journey seem just like all their friends paths, the children were now pulling more and riding much less on this sled. This made both the man and wife sad. They should be riding and laughing, not pulling and struggling so hard. One day the man seemed to wake up from a dream. His wife was not pulling on the rope with him anymore. Oh yes, once for a moment she would have the strength to do it with her husband and children, but more often than not, she started sitting in the big box they could not remove from the sled. The whole family was pulling together, but their  power seemed to be waning. The hills seemed steeper, and the ride down was shorter. A moment arrived where the man and the children could no longer pull their sled anymore. The path through was uncertain, the load too heavy. The man would pull, and pull, and he could not move it anymore. The woman was sad, the children were crying and worried about their father. The man was worried about everyone. He was full of despair. Just when he was about to give up hope, he heard voices coming from far away. Who were these people and their sleds? One person came up to the family and told them that their sled was far to heavy for them. They must let others help pull it from this day forward. The man felt his insides burst. He felt defeated by the big  box on the sled. He missed his wife pulling with him. He hated to see his children explain about the box, and all the things they had to do to help. The person who had talked to him reached down and tied the sleds together. All in all, there were a large group now coming over the hill to help. They tied their sleds together, and when the person said to pull, they all pulled. The sled started moving. They made it to the crest of the hill where others stood by. They walked over to the mans sled and  picked up the box that would not leave. But they took his wife too. Now she would ride on their sled. The man had no choice, he said ok. From this day on, you have the rope for our sled. We will still be there to steer, and curse the big box. The man reached over and told the family, we have to pull together, by ourselves,we cannot go forward. The man and the children are still on their journey, and daily they find others with their sleds. So many sleds. Too many boxes."

january 1, 2014


2013 is over! does it make a difference? when i woke up this morning many of the same issues that we faced in 2013 are still there, so, why do we make such a big deal when the end of one year occurs and the new year begins? in my younger days i remember feeling that each new year would be special. i would set goals that would probably take an entire year to reach and would imagine the joyful feeling when it was accomplished. i saw the big picture i wanted to reach but never imagined all the little steps it took to get there.  before life with all of its detours, roller coasters and devastation became my reality i saw nothing but wonderful possibilities!

so what happened? when did i stop noticing all the wonderful possibilities, the joy in life. well, life itself happened and being the human that i am i lost sight of all the wonderful, joyful moments that god has put before me. joyful moments? when dave continues to progress with his alzheimer's there can be joyful moments?

yes!

the joyful moments don't really have to be my joyful moments. someone else can experience the joy and i can be joyful with them! how many times did i miss that? probably too many times. but, i can tell of one time that i think about almost daily, almost every time i look at dave. i don't mean because i love him so it is because i remember that he told me one day that God speaks to him, he hears Christ talking to him! in all the chaos that he experiences every single day with alzheimer's he hears the voice of God in his ear! i can only imagine when i look at dave and i can sometimes see the blank look in his eyes, the confusion on his face, the determination to find his words that all that while God is speaking to him. is that why he is not frightened by the hallucinations he has because he feels the comfort of God with him, is God whispering to him that he is safe? when he looks at me and i can tell he has no clue who i am but yet i see no fear in him is it because God is speaking to him telling him do not fear for i am with you? i don't know, i can only hope so.

so, 2014 is here. how is this year going to be any different? dave will of course continue the downward spiral that is alzheimer's and i will continue to lose the love of my life and have moments or days of sadness,frustration, exhaustion, and anger. and i will even have times of envy and jealousy of others who can continue on the life journey they planned with their loved one. but, i will have moments of joy, pride and wonderment! this is the year that gabriella graduates and starts on her new journey of life!

when a new year starts it is the time mark everyone uses to set new goals/resolutions. its a time when we reflect on the past and make promises to ourselves that the new year will be better. it all sounds so clean and wonderful but of course we all chuckle a couple weeks into the year when we have "forgotten" about the resolution to lose weight, quit smoking, exercise more, learn to cook, be a better housekeeper, etc. what if we just follow the advise given in AA or NA...one day at a time!

each and every day is a new beginning. for me each and everyday is different, i have no clue what to expect with this alzheimer's journey except that there is usually a decline in some way, sometimes small and sometimes big. setting a goal to reach at the end of the year i am not sure i can do so i am setting a daily goal/resolution....find the joy. i believe that i stated some time at the beginning of this journey that i was going to find the joy in the situation but i am not sure i did a good job of that. so i am starting again and i think i have a plan to help me with that goal.

first, i have a jar that i will fill everyday with a piece of paper that i have written something that occurred that day that would be considered a joyful moment. i know there has to be joy in here some where, surely god would not have us going down this path without showing us his glory and joy, i just need to keep my heart open for those moments and capture them.

second, i am asking for you, to anyone who is still reading this blog to hold me accountable. if you are visiting us or see us out remind me or ask about a joyful moment.  some days i know will be very hard and you may have to point out the moment and i will graciously try to see it too.

so there. my 2014 will for sure have lots of downer days but my plan is to look for joy instead.  will you join me, will you help me get through this journey with joy?

monica