back home

i just wanted to let everyone know that i am now home again. both visitations went well, so many kind people with nice things to say. the memorial service was so special, pastor dave did a great job. i am (not surprisingly) exhausted, both physically and mentally so i am just going to veg out tonight. i will try to post tomorrow after i get unk & dunk off to the airport. i'm doing ok though.

we're ready

i think we're ready for the visitation and memorial service later today. my nieces completed the dvd picture slide show which i will be anxious to see. we selected things to put out of special significance and all wrote of few lines remembering russ which my niece kimi will read. i made of board showing all the wonderful GLO cards russ received with a picture of his quilt square that i made.

unk & dunk (my aunt & uncle) arrived safely and are currently on their way to pick mark up from school. matt should be arriving home in about an hour or so, bob is out running errands. this quiet time allows me time to blog!

a very special surprise was seeing my 2 best friends from college last night. linda (mez) is a methodist minister and has to do a funeral tonight in her church so she and ann (from dallas) drove up to see me last evening. ann flew into chicago and mez picked her up. mez will drop ann off in an hour or so and drive back. ann will stay for the visitation and get a ride back to mez's from my best friend from high school.

i feel so blessed to had made such wonderful friends over the years. 30+ years of friendships. wow.

prepartaions

the last day or 2 have been busy with preparations for the funeral. i know this is something that needs to be done and i do want it nice yet a part of me just wants it all over.

i am thankful my sister is helping with all of this, or maybe i should say that i am helping her with all the preparations. so many phone calls needs to be made; family, friends (of both my dad's and mine), former co-workers of my dad. then there are all the calls to the funeral home, doctor's offices, VA office, daycare, etc. everyone wants to send their condolences and hear about how it was, especially at the end. a part of me is now feeling that i can just about push the play button and just let the canned recording play. that may sound cold but i feel at times like i'm on autopilot.

yesterday sue and i also met with my pastor to plan the memorial service. it will be similar to the one for my mom. i have a few ideas but again i am deferring a lot to sue. i guess a part of me feels i did what i really wanted to do in terms of keeping russ at home for the majority of this illness, and getting russ home at the end so he could die at home, that now there is a letdown and it doesn't matter as much. i am more than happy for sue to step in.

because of how we are handling it, having 2 visitations in 2 different towns, it will be longer than my mom's or most traditional visitations/funerals. yet i think we made the right choice to do it this way. russ' family and old co-workers/friends live closer to me and will not have to drive as far with the first visitation. but they had vacationed up in door county for over 40 years and lived there for over 20 so we need to have one up there as well, where he will be buried.

my nieces are compiling photos to display on boards as well as have a dvd slide show playing. they did a wonderful job on this for my mom so i will spend some time today looking for old photos to include. whatever i come up with fine, i'm not worried as i don't think i had time with my mom's to look for any at all and it was a wonderful tribute to her. we all do our parts.

unk and dunk arrive tomorrow and then the boys come home thursday in time for the visitation. the fall colors are starting to turn. i think it should make for a very beautiful setting up north. fall is my favorite time of the year and i know russ loved to watch all the leaves turn colors as well.

happy times

yesterday russ' great niece was married. originally i was to go with my boys and bob would stay home with russ. as russ was declining bob was going to go with the boys and i would stay home with russ. as it turned out we were all able to see the wedding. me with bob and the boys and russ with my mom in heaven. lindsey and russ always had a kidding relationship. when lindsey was really young, russ used to tell her that he could fly. she bought it hook, line and sinker. when she asked him to fly, he would always tell her that his wing was hurt or broken, and maybe he would show her later.

yesterday i told lindsey that not only did uncle russ see her get married but he was able to fly around, that both his mind and wings were healed. we both smiled and hugged.

it was good to see russ' family yesterday. as flinty has posted, most were worried about me and how i was doing. i was and am doing fine. probably the biggest thing was i kept looking at my watch, as if it was time to go home, as if joann would be off duty soon and i needed to get back. i think that will continue to be the biggest adjustment, learning that i don't have to rush home, that i can again have a life of my own, whatever that may be.

for those of you interested here is the site for russ' obituary online.
http://www.huehnsfuneralhome.com/index.cfm

surreal week

i just now learned that a friend of mine just lost his father a few hours ago from alzheimer's. it almost doesn't seem possible. within a 5 day period 3 of our LO's are gone; helen, russ and now flinty's dad. they had all traveled a tough road, yet fought hard til the end. fortunately for all three it was a peaceful ending to a wonderful new beginning in Heaven. they are all now free of the disease that robbed them of their memories. we will continue to keep them in our hearts as we learn to start a new life, without them. i think i can speak for lori and flinty that our lives have forever been changed by this journey we traveled with our loved ones. but through it all we have become stronger, and more faithful.

my heart goes out tonight to both lori and especially flinty. i know i will forever feel connected to you both as i know this week will be forever etched in my mind. may God give us each the strength we need to adjust to life without helen, russ and flinty's dad. i hope they are together looking down on us praying for the same.

russ is at peace and with God

at about 5pm today russ left all his pain and suffering behind and was healed. he joined my mom in heaven. what a joyous occasion that must have been.

russ continued to struggle for almost 24 hours with his breathing and very rapid heart rate. it wasn't until 4pm that his respirations were below 40. then they began to drop slowly but steadily. as it was approaching 5pm, his face became very blue, not just his lips. his breathing was peaceful and non-labored. my sister, brother-in-law, niece, bob and i were sitting around russ. sue and i each held one of russ' hands. we witnessed as he took his last few breaths, each slower than the previous. then he stopped.

it was a peaceful death, a painless death. he was able to die at home with family present. and now he is free of this dreaded disease we call alzheimer's. i am at peace with this. sure i cried and will shed more tears, but shortly afterwards i looked towards heaven and said, "thank you God".

i will miss russ terribly but i have been missing the russ i knew for quite a while. i am thankful he is at peace now and rejoined with my mom. i am also glad he has met lori's helen.

the end is near

how a day can change in a course of a minute. russ slept on and off most of the afternoon. i sat by him and i talked lots to him, reminiscing, and thanking him for such great memories.

at 5:30pm joann arrived and we went to reposition him. immediately he turned dusky blue and his respirations went up to 60/min. i immediately called janine and she had me give him some ativan until she could order and have some morphine delivered. she had ordered all that in the morning but it will not be here until around noon on thursday.

to make a long story short, russ is now on continuous care and has been getting either the ativan and or morphine as often as ordered. this means he is getting something at least once every hour to try to relieve this. it is unclear what is going on but janine and i suspect something went wrong with his circulatory system. his extremities are cold and blue and his legs are mottled.

his respirations have been between 48-60, temp over 104, pulse between 108-160 and has no blood pressure for 11 hours. in 1/2 hour this will have gone on for 12 hours! i don't know how much more his body can take.

janine came over after our phone call and stayed until lynne arrived from the in patient unit to bridge the gap until the continuous care nurse arrived. our pastor was here from 10-2 and decided to go get some rest. he will return in the am. what a blessing it was to have him here. i pray for this to end soon. please God, end this for russ' sake, he has suffered enough.

welcome back janine!

i am feeling much better about things. janine was here almost 2 hours this morning and i think we're at least on the right track.

russ slept soundly until about 5:30am when he started sounding very congested again. by the time janine arrived he had not been able to cough at all to clear it. she applied a third scopolomine patch to help decrease the secretions. it will take about 8 hours to kick in so in the mean time we will give russ atropine 2 drops every 2 hours to also help decrease the secretions causing the throat and pulmonary congestion. what is already there he will have to cough up or evaporate.

we also talked about what i may or may not see and what possibly to expect. even though she is very honest about it she explains things in such a soft and caring way that makes it easier to hear. i had been telling bob i wanted him present because lately even though i'm a RN, when it hits so personally, 2 sets of ears are better than one. bob continues to be my rock and sounding board.

janine then had suggestions about positioning him and putting pillows under the mattress at the foot of the bed to elevate it and take pressure off the knees and feet. it made sense yet i'm not sure i would have thought of it.

victoria, russ' aide arrived before lunch and stated she already had russ on for the 5days/week now. amazing how a simple phone call can help. i helped her bathe and shampoo and shave russ. he really looks and smells good now. he was able to cough hard a few times so i think he cleared some of the congestion out. he has been dozing all morning but looks very comfortable. now that he is all cleaned up, he looks as if nothing is wrong with him, so peaceful. i pray that as his final journey comes to an end we can keep him that way. with janine, victoria, joann (his home health aide that helps me late afternoons or evenings) and most of all God, i'm beginning to have a good feeling that we can.

adjusting to home.

this morning i noticed that russ seemed much more congested. he attempted to cough and clear his throat but just had such a difficult time doing that. after about 3 hours he finally succeeded. boy does one feel helpless at that point. i wanted to cough it up for him.

after that he was pretty alert, at least compared to yesterday. the ambulance ride was really hard on him but fortunately with short term memory loss i don't think he has any further recollection of it today. around 11:30 he started licking his lips. i asked he he was thirsty, no response. i asked if he was hungry for dessert (he has always had a sweet tooth) and his eyes grew wide and his mouth opened up. he ate about 3 spoonfuls of peach cobbler, plums with apples (all baby food) and about 5 spoonfuls of thick-it water. i think he enjoyed it but afterwards he slept for about 3 hours. how sad is that to realize that he used up that much energy and strength to eat so little?

lynne, a nurse from the hospice in-patient unit stopped by to see him and help me reposition him. i tell you those nurses are so thoughtful and wonderful. i sure hope they realize that, and what wonderful gifts they give to their patients and their families.

unfortunately janine will not be back until tomorrow. the aide also didn't show, not because she didn't want to but because someone didn't enter the request for 5 days in the computer. i was just told that "janine can do that when she gets back".... oh well, thank goodness she WILL be back tomorrow! a nurse came by late afternoon to check on russ. she suggested that i put a second scope patch on to try to decrease the secretions in russ' throat. she also suggested i use a tylenol suppository before bedtime as he felt warm even though he did not have a fever. i did both. i will try whatever to keep him comfortable. what i really wanted and needed from her was to make sure russ has enough pain patches on hand. i only have 1 left that will go on tomorrow. she will order more.

janine called when she got home. she had heard about the no tuck-in visit. she felt bad but it's not her fault. someone else should have followed-up on that. she was also going to leave a voice message for the office scheduler for victoria to come 5 days. seems like that could have been put in place today if janine could do it from home when she technically wasn't working yet. oh well, don't sweat the small things i guess. like i said as long as russ is comfortable and safe, that's my main concern.

i have thought about lori a lot today. i pray she is doing ok.

home sweet home

the ambulance arrived at the hospice unit promptly at 10am. for whatever reason they were in a big hurry to get out of there as i could tell they were getting impatient with me as i was saying goodbye to the staff. it was an emotional time for me. as much as i wanted russ to come home they have been so wonderful not only to russ but to me and my family as well. they are truly God's angels on earth. thank you all!!

the ride home went ok but i could tell russ was somewhat stressed out. he kinda had that panicked look during parts of the ride. it was of course bumpy but it didn't matter. i swear the ambulance driver was going over 80mph part of the time. i thought to myself, what's the rush, russ is going home to die, this isn't a life and death situation, at least not yet! i was so glad to be there with him. we squeezed each others hands the whole way home.

russ has slept basically the whole time since he's been home. i even fell asleep for about 20 minutes in the recliner next to him earlier. once again though he seems comfortable and peaceful. i feel so blessed for that and pray it continues for him. he is now wearing a fentanyl pain patch to hopefully keep any pain he might experience in check.

my sister and brother-in-law came over for dinner. my good high school friend had dinner delivered tonight - it was a real treat and so thoughtful. it's amazing what you can order from out of state. thanks again mooch!

as much as i miss the staff i am SO happy and relieved to have russ at home. i feel at peace, this is where he belongs. i didn't get my tuck-in visit or call from vitas but that's just as well. i can always call them if something comes up. janine should be back in town tomorrow so i anticipate she will call.

on a sad note, my dear friend lori, lost her friend helen today from alzheimer's. my heart is very heavy tonight for lori, yet glad to know helen is out of pain. she died a few hours after russ came home. my prayers are for lori tonight.

i agree lori, this isn't life

lori, a very good friend of mine from the board titled her blog today, "this isn't life." i could so identify with her post. today russ actually had a very good morning, relatively speaking. he was able to track people and i actually think he recognized my face and voice unlike the last few days. i told him i loved him and he attempted to move his lips to reply what he used to say, "i love you too." but was unfortunately unable. i told him that he was going to get to come home with me in 2 days and he smiled. he slept all afternoon, but peacefully.

russ had 3 BM's yesterday and 1 this morning. i have been talking to the nurses trying to decide what is the best course of action for medication once he comes home. i don't want him constipated yet i don't think he needs to be having that many stools when his intake is next to nothing.

my 2 nieces arrived this afternoon but he slept through most of their visit. i tried to wash his face to arouse him but no luck. in the evening he seemed to awaken and the nurses tried to get some medicine down him but he gaged, coughed and possibly aspirated some of it. they said he looked panicked. the nurses decided then that enough is enough. it is time to stop all oral intake. he can virtually not swallow anymore. tomorrow hopefully the doctor will order a pain patch for any discomfort. once again, all my questions and concerns about how to handle the bowel meds at home have all now been answered.

russ be will coming home with me monday morning. i will do everything possible to keep him comfortable and pain free. nothing else will be attempted. as lori said this isn't life and i know russ would agree. maybe helen and russ can cross the gates into heaven together, free of this disease. if not and helen goes first i hope she will be calling hello, hello, to welcome russ Home.

getting ready to come home

today russ slept most of the day. he seemed uncomfortable as well. he did have 2 BM's, rather loose but seemed like he was having a lot of gas. his stomach is still distended and we know the ileus is still present. one of the nurses said it seems to be filled with a lot of air. not sure what is causing this or what to do, maybe nothing. he hardly ate or drank today. the catheter was put in and he didn't seem to mind at all. i'm glad as hopefully it will help prevent skin breakdown from the concentrated urine as well as be easier for me.

i spent a lot of the day calling russ' relatives to give them updates. i also started making phone calls for a little additional help when he comes home on monday am. i found out that russ' hospice home aide will be able to come 5days/week vs. 1. - yeah!!! i'm not sure how aften his nurse janine will come. she is on vacation so i will have to wait until she gets back in town to ask her. the aide who was coming a few evenings a week is really flexible. she really loves helping with russ and i like her as well. i think we agreed that we will hire her more independently. that way i can be more creative and flexible when she is here. with russ sleeping so much, the main thing i need is help with repositioning if i am alone. she lives relatively close by and i will have to pay less this way (not going through the agency) and she will make more. i know it's not the way i'm suppose to go about it, but let's face it, it's a win win for us both.

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.

results!!!

it was a very long day (again) but at least there were some results! the second x-ray still showed a "mild ileus" in the small bowel with gas and stool in the large intestine(i will have to ask the doctor in the am how that differs from a "partial ileus" which the first x-ray showed). a fleets enema was given at 7pm and about 1 hour later there was a LARGE result. what a welcome sight.

now over the next day or two we will have to see if with all the stool softeners, etc. russ is able to produce on his own. even though his results after the enema were great i have to wonder how much of that was still residual just from the large colon and if any of it was from above the ileus in the small bowel. he had gone basically 10 days without a significant BM!

for tonight though i am too tired to think about it. russ slept through basically the entire procedure and clean-up. i guess you could say he was just "pooped out." i feel the same way!

thanks for all your prayers and support. you guys continue to amaze and uplift me!

good morning

i walked into mark's room late last night and was reminded of a poster i gave him a few years ago. it say's

GOOD MORNING!
THIS IS GOD,

I will be handling all your problems today.
I will not need your help,
So, relax and have a great day!

(author unknown)

i pray we all have a great day as well!

rollercoaster ride

i really feel like i'm on a rollercoaster ride this past week. when i arrived at the hospice unit this morning russ was sleeping and i was told he had had no BM during the night but slept well. (i later learned he did have a small BM during the night but definitely not enough considering what i imagine must still be up there).i noticed he did not have his oxygen on and the nurse told me that last evening they had him out by the nurses station and he didn't seem to need it so they kept it off. a good sign right?

well russ slept most of the morning and just didn't look good to me. when i could get him to open his eyes, he just stared right through me. i'm not sure he even recognized my voice. his cognitive level has definitely deteriorated.

i had a good honest talk with his home hospice nurse janine today. she stopped to see him at the unit and could hardly arouse him and when he did wake, he had the same blank stare. she got me to start thinking about when he comes home, he will still be appropriate for day care? is it really good or fair to russ if he is sleeping almost 24/7? she also asked me if i thought russ would ever ask for food or drink the way he was now, or if he would just sleep? did i really want to try to encourage and force feed him? these are some hard questions i need to start thinking about. it was a good talk and one i will have to ponder how russ would answer them. for now i will take it one day at a time and just worry about him pooping so he can get home.

the doctor made rounds and decided to start him on a bowel regimen since he really hasn't started to move things on his own. he was given a suppository at noon but as of 9pm no results.

russ ate some scrambled eggs for breakfast but refused lunch and ate only a few bites of melon for dinner.

late afternoon russ woke up and was fairly awake again. we listened to music and he would perk up when he heard the saxophones playing. he feet were also tapping to the beat. a total different person. my sister arrived in the evening with my niece and he even ate quite a few bites of a pasta salad she brought.

i was able to get him to walk twice again today. bob stopped by late afternoon and we got him to walk and this evening my sister, niece and i got him up. he was even smiling when sue and kristen were there. when we put him to bed after his evening walk, the nurse pointed out that his knees were mottled and cold. this is frequently seen when the cardiovascular system is compromised and the bodily systems start to shut down. his heart has never been an issue for russ but then again.......this is usually a sign one see's when the end is getting near. his lips and mouth appeared blue, so the oxygen went back on.

this rollercoaster ride is showing such drastic dips and turns. i wonder when will it end and coast for awhile or will it come suddenly to a halt? only God knows the answer to that. i pray for strength for me and peace for russ.

waiting, over analyzing, patience

today has been a very hard day for me. sometimes i wish i weren't a nurse because i think i read and analyze things more than they need to be. russ kept his lunch and dinner down yesterday which is great. his appetite has drastically decreased since before his ileus. i wonder is it because he hadn't eaten for 3 days (most likely), is it because he still has a partial ileus (possibly) or is it because he did have another bleed and the disease has just progressed so that he can't process eating as well(possible as well).

there have been no real BM's since eating but it is only been 24 hours so i need to be patient. this morning after breakfast he was very cool & clammy like he was prior to the transfer to the hospice unit. i wonder if it is because the day was starting to heat up and i needed to turn the room air conditioner on (most likely) or because the block in his small bowel is still there (possibly)?

after breakfast he started hiccuping and could not stop for about 20 minutes. the same thing happened after dinner last night and lunch today. i know that if the blockage is still there, his enlarging stomach will put pressure on his diaphragm which will cause the hiccuping. is that the reason (quite possibly)or is he swallowing air after not eating for so many days (possibly), or is it coincidental? (?) his stomach still appears fairly soft and he still only looks 7 months pregnant instead of 9.

he was very sleepy today after breakfast and all he wanted to do was sleep but i knew i needed to get him up to walk. today it took me and an aide i bet 15 minutes to get him up, unlike the previous days before he started the solid foods again. was this due to him being uncomfortable in his gut (possibly), tired from the eating and walking the previous day(quite possibly) or just "one of those AD days?"(very possible).

i am not very good at always being patient. i need to put my faith in God's hand and pray that He will take care of things. this is hard for me as i like to be in control. with this disease, there are so many unknowns that we know this is not possible. so many have posted, myself included, about the uncertainly of this disease. yet that doesn't make it any easier to accept it.

i guess i still have a lot of work to do on that. i hope to get some sleep tonight and save some analyzing for tomorrow.

solid foods

russ slept well pretty last night. i did too as i decided to go home yet i woke up a few times thinking i heard something on the baby monitor. then i would realize i couldn't have and would wonder how russ was.

yesterday was only liquids for russ. today the doctor came in and said he definitely heard more bowel sounds and wanted to try russ on solid foods. for lunch he had a few bites of hamburger, baked beans, cole slaw and watermelon. for dinner he had a little vegetable beef soup, and a few bites of a ham sandwich. and of course some ice cream, russ loves his ice cream. we will see tomorrow if he is able to keep it down but more importantly if he is able to pass it through, ie poop. i never thought i would be so glad to see someone poop.

i talked to one of the hospice nurses and she said they recently lost someone due to a bowel obstruction and agreed it is a very painful way to go.

russ was able to walk again today so that was good. i want to try to do everything i can to get that peristaltic action going again. he wasn't as alert as yesterday but that could just be the day.

i hope things continue to keep moving in the right direction (no pun intended!). i look forward to getting him back home, where i can use my own bathroom, my own kitchen to heat food up for myself, watch my own tv, and most importantly my own computer to check in more frequently with all my friends blogs. i really miss that connection. i feel i have so much catching up to do. too bad i can't ask to move the hospice computer into russ' room, it sure would make my life easier!

a new dawn, a new day

russ is much better today!!! he is not out of the woods yet, but maybe a step in the right direction. he woke up this am about 9:30, opened his eyes and smiled at me! i can't tell you how that made me feel. that in itself was more than he had done in the last 48 hours. bob and matt showed up around 10:30. we decided to get him up and see what he could do. the nurses were aprehensive yet i knew if he would get up for anyone, it would be me. well, not only did he stand but he walked with me partway down the hallway, more erect than his usual slumped over walk. the nurses and even the MD who arrived during this were downright shocked.

his stomach this am has louder bowel sounds and even though it is still distended, it is not as rock hard. we are going to try to push some liquids today and see what happens. russ had another suppository about an hour and a half ago but no results yet. the MD does not want to give any oral laxatives at this point until we see if he can have more BM's and keep the liquids down without vomiting. so he is by far out of the woods yet. right now he is sleeping.

his blood work came back looking pretty good except for some electrolytes off due to the dehydration from not drinking but no signs of infection. he does however have a slight temp this am. not sure what that might mean. the urinalysis is not back yet. holiday weekend i guess.

i'm afraid to get too excited but at least we are headed in the right direction for now. last night he had an episode where his breathing became so shallow and slow i thought we might lose him. so to not only have him awake this am, but able to walk is pretty remarkable. i am thankful for this time we have today and that is good.

all of my prayers and all of your prayers were heard. i truly believe that. i still pray for God's will to be done yet i also pray that it will not be due to a ileus, or blocked bowel. that i fear would be a very painful way to go.

who knows, i may even go home tonight and get some sleep. what an idea.....

in-patient hospice unit

just a short update. russ vomited again last night about 4am. brown. janine came this am, still no bowel movement. abdomen is still very distended although he has bowel sounds. his diastolic blood pressure is up. she suggested i take him into the in-patient unit to get an x-ray of his abdomen to see if it's just constipation, bowel obstruction or something else.

the hospice MD came to see him. he will order some blood work, urine specimen and x-ray. he suggested broad spectrum antibiotics to cover infections but i declined at this point. russ is running no fever and does not seem to be in pain. he is on oxygen as his respirations continue to be very rapid and shallow. a VERY hard decision for me but i know it is right at this point.

i shed many tears on the drive over but i continue to pray to God for strength for me and peace for russ. i will update when i can.