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