a decision was made

earlier this week as well as yesterday, hospice gave me the impression that russ would be staying here until the end. they questioned the transfer to go back home, how difficult it might be on him, would he know he was home, etc. i really struggled with that. i have always thought and wanted russ to die in my home with me by his side. i kept thinking, was i being selfish wanting to take him home?

this morning the staff had their weekly conferences and felt that russ is now stable from the ileus, what he was admitted for, and it would be difficult to justify to medicare his continued stay. the scopolomine patch seems to be working well as he is not near as congested this am and has no fever. i was then told they needed to discuss discharge plans with me.

how relieved i was! i would no longer have to make that decision, it was being made for me and one i feel very comfortable with.

i know it will be difficult yet i feel comfortable with it. hospice is helping me to look into additional help as russ is about 200# dead weight. (pardon the expression). he will come home with oxygen and a foley. hopefully the foley will help prevent skin breakdown.

resources are not plentiful for russ but he should have more than enough for the time he has left.

he is sleeping at least 20/24, hardly eating at all and his color and circulation does not appear to be good.

i thank God for answering my prayers on this.

hard decisions

i came in this morning to learn that russ had a temp of 100.6 axillary. (really 101.6). when the MD made rounds he said he can hear congestion in his left upper lobe. he wanted to get a chest x-ray and start antibiotics. i again struggled with this. to make a long story short, he will not get the x-ray or the antibiotics. he will instead start a scopolamine patch to try to decrease the secretions.

russ seems comfortable and not in pain. i had a long talk with one of the nurses. she said last evening he had a tough time. when they got him back in bed after being up for a couple of hours, his mouth and lips were dusky in color, his breathing has become what they call "purse like", very rapid and shallow, and his lower extremities were mottled.

i really feel things are starting to shut down. he is usually arousable but will sleep if not up.

this is so hard. i want him to be comfortable yet i am choosing no aggresive treatments for him. i do think this is what he would want. he has deteriorated so much since he has been here.

on a positive note, his bowels seemed to be working yesterday.

please say a prayer that russ remains comfortable. thank you.

september 11th

so many people will always remember what they were doing exactly 6 years ago today. to me it's kinda like when JFK was assassinated. when something so horrific happens in your life, you tend to freeze that moment and those feeling in your mind forever.

so many others, flinty, stef and bigsky girl have already posted on this topic and have done a great job. i think the other thing that i will always remember about 9/11 is that a few weeks later i was up visiting my parents for the weekend. my aunt and uncle were there. my uncle had served in the navy during WWII like my dad did. i remember asking the 4 of them how 9/11 compared to the bombing at pearl harbor.

my uncle immediately spoke up and described his feelings as did my mom and dad's sister. i was surprised that my dad just sat there and said nothing. i found that really odd. i wondered at the time if it was because he was reminiscing and remembering events from WWII.

in january of 2002 russ was officially diagnosed with AD. i have often wondered now if at the dinner table that night he just couldn't remember what the other 3 were talking about, that he had no recollection of 9/11. i think that may be the case because he has never really talked much about the event as others do. maybe it's just as well. living through one event like that was more than enough for most.

my heart goes out today to all those victims of 9/11, their families and the heroes that stepped up that day to save lives.

as an update on russ, today is not a good day. the doctor made rounds this morning and said the bowel sounds were not good. he felt the ileus was rearing up and his stomach was very distended again. he did however have some stool, but liquidy. and this morning russ sounded somewhat rattly, especially when he coughed.

AND to add one more thing to my quiet, calm life, bob's mom fell last pm and spent the night in the ER. she has a silver dollar sized egg on her head. fortunately the CT scan was negative. bob and i may drive up to see her tomorrow around lunch time after i check in on russ. i wish she lived closer. it is about a 2hr 45min drive. at least bob's brother and family are only about 3 minutes away.

a year ago

it has been a little over a year since russ came to live permanently with me. it has been over 18 months since my mom died. as i stated in an earlier post russ initially lived with my sister. last summer my sister needed a break so we tried splitting the time up so that we could share the responsibilities more. it was clear that that was not a wise option for russ so right after labor day russ moved in with me.

there have been SO many changes in that year. a year ago russ was able to take daily walks of at least a mile, still feed himself, still dress himself, still toilet himself with NO incidences of incontinence, still shower himself. he was able to help contribute with minimal household chores; setting the table, loading the dishwasher, vacuuming. we were able to have some decent and productive conversations, some days pretty coherent as well. during this time i would talk to him a lot about his past and youth trying to learn as much about that part of his life as i could and as he could remember.

when i think back to a year ago i still can't believe all the changes. if anyone would have told me that he would have declined this fast in 1 year i would not have believed it. he is now someone who cannot feed, dress, toilet, or bathe himself. he also can speak very few words and take very few steps on good days.

although there are many negatives i have to look at the positives that have come from from this downward spiral as well. russ now sleeps through the night. he used to be up a minimum of 3-4x/night wandering the hallway so at least my sleep is a little better most nights. the repetitive questioning has stopped. i am no longer asked at least 10x/day where his car is, even though he hasn't driven in well over 3 years. and i no longer have a shadow. i am able to walk across the room, into another without feeling russ' breath on my face. and probably best of all, i can go to the bathroom without having someone join me.

would i trade today for a year ago? that is a tough one to answer. if i could keep him where he was with no decline i probably would. but i know too well what happens next, and that is not a good thing.

taking a personal day

(matt 21, mark 19)


throughtout the 17 years that bob and i ran our business we afforded our employees a personal day to use at their discretion every calendar quarter. after 1 full year of caring for russ full time, i decided to use a personal day.

the boys left for college about 10 days ago in the midst of russ developing his ileus. mark actually left the day russ started showing symptoms but i was able to take him to madison and help him settle in before realizing what was going on. i was to drive down with matt the following day to help him clean and move a car full of things in. that never happened. bob and matt managed to drive down for a brief time with a car load but came right back. matt then delayed going for good for 1 day until he saw what was happening with russ. i felt matt was short changed in this process.

since russ had a stable day yesterday, bob and i got up early and went to church. afterwards we drove to madison (1hour) to see mark for a couple hours and take him out for lunch.

we then left and drove 50 minutes to whitewater to see matt in his apartment. his bathroom needed some major cleaning so bob tackled the shower and i worked on the bathroom sink and tile counter. i also cleaned and oiled all his cabinets. major improvement if i do say so myself. we took matt out to dinner and then drove the 50 minute drive home.

it was such a nice relaxing day and i feel much better for having done it. i needed to know that they were both doing ok and that i tried to help to get their apartments in shape for them, especially matt. it is amazing the appearance of some apartments in college towns and what some landlords can get away with knowing they are renting to students.

both my boys are such good neat guys and i hope that their year in school is a good and fun one. they were such a great help to me with russ over the summer and matt all last school year. but now is time for them to fully experience college and all it has to offer. i wish the same for my friend stef as well.

on the way home i called the in-patient unit and they said russ had a BM this morning after a suppository and was up most of the morning. he did very well but had slept basically all afternoon and didn't eat dinner. what i am most amazed at was that he slept through the exciting packers game! in wisconsin, the green bay packers are a huge deal. maybe that's why there was virtually no traffic on the roads between 12 and 3:30! russ did fine without me today so it was a well spent personal day all around.

status quo

no real change in russ today. he was up for about 2 hours at lunch time and again for about an hour at dinnertime. his appetite wasn't as good today, basically only wanting to eat sweets. he also seemed more withdrawn, just wanting to sleep or keep his eyes closed when up. he has had no further results since his BM on thursday. the doctor today said he has normal bowel sounds but also tinkling bowel sounds indicating that the ileus is still present. i'm not really worried yet, but i wonder if the AD can cause one's mind to shut down so to speak, so that they forget how to push and have a bowel movement? russ has been on a daily stool softener and laxative since wednesday and so far only able to have results with an enema.

fatigue

yesterday russ had a ok day but was tired. i guess he was entitled after his "big ordeal the evening before." he slept through breakfast and through most of his bath that the aide gave him at 11:00. we then got him up inot the wheelchair. at noon his lunch arrived and considering he has eaten next to nothing the past week, he ate a very good lunch. i kept him up in the wheelchair until 3pm. my niece arrived and took him for a stroll and he sat at the nurses station.

during that time i ran out to bring back the staff a little something. they had an emotional morning as they lost a young woman who had been on hospice for over a year. plus the unit has been busy so they have been short staffed. i brought back items from body works that would hopefully make them feel good and pampered. russ did a pretty good job holding the card and bag for them. he got lots of kisses from the staff (especially glenda)which of course he loved!

i asked russ at 3 if he was tired and a loud, emphatic "yes" resounded. back to bed he went and he did not stir much after that. he ate very little for dinner so i am thankful for the lunch he ate.

i as well came home exhausted. bob knew i was tired when i said i was going to bed and it was well before 10pm. he asked me if i blogged and i told him i was too tired. i really think the emotional stress of last week got to me and yesterday seeing that i was able to keep him up for awhile and eat and he did pretty well, the fatigue factor took over. i slept like a rock for most of the night and woke up refreshed and ready to tackle whatever faces me today.

i called the unit and russ slept soundly. glenda is there again today and lynne will be coming on for pm's. what more could russ want! he'll have all the kisses any man could ask for.