am i being tested?

russ had a somewhat restless night but i guess it could have been worse. he did vomit one more time late last night. this morning his sheets were drenched from sweat and he has been cold and clammy most of the day. it is also apparent to me he has no idea what is happening around him. it is as if he is gone, yet i can see his bodily presence.

janine came this morning and ended up giving him a suppository. there were minimal results a few hours later. she will be back in the morning to do another check on him.

russ has slept most of the day. at least he seems peaceful. until late in the day, he would take nothing by mouth. his lips were starting to look dry and chapped and i fear dehydration. late afternoon and early evening he took in about the equivalent to one slice of watermelon and maybe 10-12oz. of water.

his breathing continues to be shallow and rapid and his heartbeat is fast. janine is not really sure what is going on, it's so hard when russ can't verbalize. best guesses are that the vomiting is from constipation or some bug or virus he picked up.

how long will it last and will he get better is anyone's guess right now. i have always thought and said that i will let whatever happens, happens. i still feel that way for today but i know that if russ doesn't show signs of improvement it will be hard. i pray that i will stay strong in my convictions as that is what i think and know that russ would want.

what is also hard is when i am asked questions as to what is happening with him. i don't have the answers as i know does anyone yet i feel that people expect me to. i guess i just feel so helpless and inadequate because i don't have the answers. all i know is that russ still has the most vacant look on his face that i have seen to date. his color is a little better today but his eyes look dark and gaunt.

i just pray that he remains comfortable and that the Lord sees fit to end russ' suffering if he is not to get better. i don't like being tested like this and i pray that i can remain strong for however long that will be.

how do you feel?

russ woke up this morning fairly alert compared to most mornings. when he arrived home from daycare he looked like a totally different person. he appeared almost white in color, with dark cicles under his eyes and a vacant stare like i have not seen before. he actually looked kind of scary, truth be told.

he was totally nonverbal and ate virtually nothing for dinner. that in itself is highly unusual. i preceded to get him ready for bed at 6:45 since he was already dozing big time. about 8:30 he woke up in his chair and threw-up. i don't think i can ever remember my dad throwing up, ever. after about 10 minutes of intermittent vomiting, it seemed to subside. i took his vital signs and they were ok except for a rapid heartbeat; blood pressure ok and no apparent fever.

it has been 3 days again with no BM. his abdomen is hard and listening to his stomach there are no bowel sounds. of course all sorts of things start going through my mind. is this the start of a bowel obstruction? is he that constipated that nothing more will go down? 2 nights ago i didn't feel well; is this something i gave him or is it possibly something he picked up at daycare? tell me russ, how do you feel, are you hurting somewhere?

i ask russ how he feels but i get no answer. just starting into space. even his usual picking at things in the air are not present tonight. just nothing. i press on his stonach but again no answer.

he is in bed now sleeping soundly. i have no idea whether he will sleep through the night peacefully or not. time will tell. i wish that he would verbalize and tell me how he feels. is this something that will pass or something to be concerned about? i will talk to janine in the morning and see what she thinks.

who knows though, maybe russ will wake up smiling and alert. i can hope so. i will also pray.

wondering

one of my AD caregiver friends, lori, has had a rough night and day with helen. helen is now in the inpatient unit of hospice for evaluation and stabilization. i have thought and prayed a lot for both of them today and it got me to thinking further. there are several of us who follow each other's blogs on a daily basis. 3 of us currently have hospice for our loved one's and another may be under hospice in the near future. i wonder who of us will be the first to lose their LO to this disease? will something unexpected or unrelated to the AD happen to take their life? or will they just progress rapidly and that will be their ending? how will i feel? i know that i will feel a loss as i feel i almost know them personally through their caregivers blogging. i've also come to rely on their posts and comments on a daily basis. we share some of our deepest feelings on our blog and do so knowing we will not be judged but shown support and empathy for our feelings. but if it is one of them will i also feel a twinge of envy? will i wish that it was russ that had ended his suffering instead of one of the others? i pray that God will give me the strength to handle whatever He sees fit.

AD quilt

here is my finished square for the AD quilt that some of us from the AD caregivers forum are making. there will be 16 different squares from across the country made from caregivers for their loved ones. i have never quilted before so it was somewhat of a challenge. but as with any labor of love, i enjoyed the experience and am glad i participated. "camingnana", who is a quilter, agreed to put all of the squares she receives from us caregivers together to make the quilt. i am so anxious to see the final product. thank you camingnana for all your patience with us and hard work!

fleeting memories

(my parents about 2 years ago)


yesterday russ had some real but painful moments of lucidity for my family. he slept on and off most of the day. it was saturday and i explained why i think that happens. he has only spoken of my mother about a handful of times in the past year. the first time he brought her name up i literally became sick to my stomach because he asked where she was. this was about 3 months ago after not speaking her name or remembering her in about 8 months.

he has not been able to identify her in pictures for almost a year now. sometimes he will act like she is not in a picture and other times he will ask who she is. i have found it's less upsetting to him if i just say "that's someone you knew who was pretty special" than trying to explain she was his wife, my mother, etc and watch him get upset that he can't remember that he was ever married, much less to my mom.

anyway, i stammered for awhile the first time russ asked where she was and i just told him she wasn't there. if he truly remembered her at that moment for who she was to him i couldn't see subjecting him to the pain of her death all over again. fortunately that answer pacified him and the subject was dropped. another time he wondered "where she was" when i said she wasn't there so i lied and said she was playing bridge (something she loved to do) and again he stopped with his questions.

yesterday russ asked the same question, but to mark, and when i was out of the room. mark ignored russ at first because he wanted time to think of how to respond. russ asked again and mark replied "gene who?" mark said he then felt bad because russ spent about the next 30-60 seconds trying to speak and finally russ said "hubby." mark then remembered what i had told him to say and that again pacified russ temporarily. russ must have thought a lot about gene yesterday because he asked me 2 more times during the day. fortunately simple answers satisfied him both times.

a part of me feels guilty for my responses yet i do know it's for the best. it's that i just feel like i'm brushing off her existence when i do. that is certainly not how i feel about her. i would love nothing more that to sit down and talk about my mom to russ, how wonderful she was and how much i miss her every day. to reminisce about the times we spent as a family and even cry together. but i know i can't and never will be able to. i must and will continue to answer him the way i have been. i feel terrible that i pray that he stops asking as well.

fortunately for my family, russ did not remember today......

sleeping

i have found that the last 2-3 weeks russ primarily sleeps on and off all day on wednesdays and saturdays. i really feel that that is because he is in day care on mon, tues, thurs, fri. it must really wear him out and take a lot out of him so those two days are his to regroup and recuperate. i have talked to the people at day care and they said he will doze while he is there but they try to keep him involved in activities so that he will be tired and will sleep at night. that is good since i do NOT want to return to the times where he was up multiple times during the night. they also said that he does not seem frustrated and the activities are geared to what he may be able to do, ie simple things like even holding and touching objects.

i have often wondered what it must be like for someone with AD struggling to stay connected with what is happening to them in their environment. how it must be so difficult to try to say or do something when the words and actions aren't there or won't cooperate. and then i also wonder when someone is really near the end, is there anything that goes through their mind at all? for the short hours in the day that they are awake do they think about anything? are they capable of processing much if anything at all?

aricept and BM's

it has been 11 days since i have stopped the aricept for russ. there has been no appreciable change in his behavior that i can see. one disturbing thing is that he has only had 2 BM's in the last week. i know that one of the most common side effects of aricept is diarrhea. russ used to have periodic problems with that but has had only a few episodes of diarrheas over the past 6 months. now that he is only semi-ambularory on good days he gets virtually no exercise. thus, maybe that side effect of aricept has been keeping him regular.

it has been 4 days now since his last BM. he had MOM last night with no effect. i will now have to start experimenting with stool softeners and laxatives, something that i know i must but i'm not looking forward to it.

russ still eats extrememly well but he has decreased his liquid intake over the past week. both daycare and i are trying to push fluids but he seems to refuse if i push too hard. i guess it will be good that he will be at home all weekend so i can monitor him, but a part of me wishes he would be at day care when the dam bursts!

weather

for most of the summer we were under a drought. it didn't rain for almost 2 months. when i was up in door county the grass was not brown but almost white. they even had a burning ban which i can never recall having. i had never seen wisconsin this dry. now it has been raining for almost a week. some parts of the western state have even become declared a state of emergency due to all the flooding. this morning our gutters were clogged and as bob was attempting to clear them, the ladder slipped on the wet grass and bob was left hanging from the gutters like in "meet the fockers." now it seems funny and we laughed about it but at the time it was kinda scary.

how things can flip and turn in no time at all. such is the case with caring for someone with AD. things can be going a certain way for awhile and then overnight or even during the day things can change and do a 180 turnaround. usually it is not for the better but that can also happen, it just usually doesn't last as long.

like the meteorologists, the health care profession can try to predict what will happen and why. but we also know that with meteorologists where else can you be wrong 50% of the time and still keep your job. such is the case with AD. just when you think you know what may be happening, when you can predict what your days and nights will be like, it changes as well.

changing roles

i was at one of my support groups yesterday and there were a few new people there. they have recently been faced with the diagnosis of AD. they have so many questions and fears. i can remember all too well how i felt the first few times i attended support groups. i was afraid to admit some things, petrified of what was facing me and such an emotional wreck. it seemed i would cry at least a few times each time i went.

seeing the new people yesterday and hearing all their questions and concerns made me remember all those feelings. i remember how i found advice from those others in the group early on, how their LO's seemed so much further down the road than russ.

it has been well over a year since i started going to the support groups. russ has shown such a decline in the past year. i now realize that russ is on about the same level or worse as some of those other AD people that were much further along than he. but even more i realize that "I" have become one of the people that the newer members come to for suggestions and advice.

i still have alot of those feelings of fear in what lies ahead of us yet i also have a better idea of what to expect. and i now know that i am not alone. besides the support groups i have found a new set of friends who i can talk to daily who are with me every step of the way. what a blessing you all are!

deciding hospice

a few people have made posts or have started up with hospice in the last week or so. every now and then there is also a rush of questions posted on the forum regarding hospice such as when do you know if it's time, how does one accept that hospice is needed.

i was first approached about hospice back in january. it was right after russ had his first brain bleed and he was in the hospital. the MD covering for russ' primary was the one who brought it up. my first reaction was shock, not because i was against it but rather because i didn't think russ would qualify. about 20 years ago (gosh where did the years go???) i had been an oncology nurse. i was used to referring some of our patients to hospice. the rules then were much different than they are now. a MD had to state that there was less than 6 months to live and if you lived longer you had to go off hospice. also one had to be homebound, meaning they were confined to the house.

my first reaction to the MD was, "but russ is not homebound, he goes to daycare". needless to say i was quickly educated on the different guidelines in effect now and agreed to speak with the hospice affiliated with the hospital. the admissions nurse was nice but pushy, wanting me to sign russ up immediately. i had had interactions with vitas hospice on a professional level plus i knew i would have to talk to my sister regarding this possibility.

sue initially had a hard time accepting that this should be a road we should explore. i was glad when she called a cousin of ours who works in hospice to get her point of view as well as encouragement to try it.

unlike sue and others in the country trying to decide whether hospice is appropriate or not, it was a not a difficult decision for me for many reasons.

the decision to make russ a no code had recently been made. even though some hospices will accept people who are not a DNR, i knew that was a step in the right direction for using hospice. i also knew from my oncology experience how wonderful hospice and their philosophy is, and especially how supportive they could be. i think the ultimate decision pushing me in that direction was a discussion i had had with russ 3 summers ago. we were driving in the car and he tried to describe to me what it felt like to him to know he had alzheimer's. russ described it as "my brain feels like it is one big mess of cobwebs, and i can't clear them out to think straight." what a wonderful description on his part. he also went on to tell me that he wouldn't wish this disease on his worst enemy and if he had a gun, there were some days he felt like ending it all. russ admitted deep down he could never take his own life but yet he didn't want to live his life in such a fog. he would also tell me that if God saw that it was time to take him, that that would be ok.

i know he didn't share that with many if anyone else; my mom told me he never expressed it to her. after my mom died, russ said on a couple of occasions, "gene had so much life left, it should have been me, not her."

so for me at least the decision was an easy one. i truly believe it is what russ would want too, not to be keep alive longer than need be. he would not want a lot of testing done as things arise, he would want to let nature take it's course. he does have a living will that states no life support or heroic measures so that helps to make this russ' decision, not solely mine.

as much as russ loved life, this is not the life he would have wanted for himself. he would not want to be a burden on his family. he would want to be with gene in heaven where he could dance and laugh again, go out to eat and travel all over heaven. russ would also want to be comfortable and not in pain which is what i want for him as well.

no ones knows how much longer russ has to live. he could go quickly which is what i pray for or he could linger. he has been on hospice now for over 6 months. i feel truly blessed that he has a wonderful nurse in janine. his aide victoria and the nurses at respite treat him caringly as well. what i do know is that along with hospice we will keep him as comfortable and happy as possible until God calls him home.

music

every since i can remember russ has enjoyed music. he has told me that when he was young he used to play the saxophone. his older brother borg played the clarinet and they both learned to play each other's instrument but obviously not as well as their primary instrument. i can remember when i started band, russ offered his saxophone for me to play and i was amazed at how he could still play it after all those years.

russ also had a decent voice and would love to sing if he knew the lyrics. as recently as last year we both would love to stand next to each other in church to see who could sing louder on familiar hymns. at christmas time we would even harmonize on our favorites. now at church he will just hum along.

both my parents were good dancers and loved to dance. i can still remember having russ teach me some simple ballroom dance steps in our family room before i went to my first dance in junior high school. my mom use to teach dance at the junior college; ballroom and later, line dancing. i remember she use to tell me when she was introducing a new ballroom dance step that she would take russ with her to demonstrate.

russ loved the big band sounds and especially frank sinatra. he and my mother must have had every album frank ever made and went to many of his concerts. twice i took them to see frank sinatra when he sang in milwaukee as birthday or christmas presents. when bob and i got married, my cousin sang the song "more" at our wedding as it was my parents favorite sinatra song. the song i danced to with russ was "nancy with the laughing face" also by sinatra. when my niece was married 2 summers ago, they played it at their wedding. i asked russ to dance to it. we did but unfortunately he had no recollection of my name even then or that it held special significance to us.

russ also always enjoyed musicals. 4 years ago my nephew had the lead in the musical "the music man." russ has long since forgotten ryan's name but if i tell him "76 trombones" is on the phone, he will smile and start singing or humming the song.

the most dramatic recollection of music and russ was back in january when he had his first brain bleed. he was admitted to the hospital which proved to be a horrendous experience. after 24 hours i went home to try to get some sleep and get some things to take back to russ. my niece's were with him while i was gone and said he had had a very restless, agitated time. i quickly put in a frank sinatra tape and half way through the second song russ had his eyes closed and was resting quietly. i don't think my niece's and i will ever forget that drastic change in him.

even today when russ starts to get restless i can usually calm him down with music. our cable tv has music stations. either the big band channel or easy listening seems to do the trick. russ usually falls asleep each night listening to one of those two stations.

for the most part i now have to be satisfied just listening to music with russ. he is still on some days able to tell me when he recognizes a saxophone playing. other days i will ask him to dance with me and he will stand up and move his hands back and forth to the music while holding my hands.

but what has never left him and i hope never will is his foot tapping. he is forever tapping his feet to the music. sometimes only one foot but for the most part it is both, and always in rythym.

my friend at the alz. assoc. told me that rhythm, rhyme and music are the last to go. God willing i sure hope so.

pictures don't lie

i have found that even though i realize that russ is slipping and far from the father i knew and loved, a part of me still thinks of him as i wish to remember him. when unk & dunk were here last month unk took lots of pictures. earlier this week i received a DVD of his summer trip, including his time at our house, helping to care for russ.

as i watched the DVD, i was floored and shocked. my initial thought was “oh come on unk, you could have put a better picture in than that!” then i thought about it some more. there were only about 3 pictures total of russ in the DVD. i know unk took LOTS more than that of russ, so he couldn’t have picked out better ones? it suddenly hit me that those WERE the best ones! russ can no longer stand erect but worse yet was his expression. russ definitely now has that look of AD, the blank stare, a vacant look for an expression on his face, and an attempt at a forced half smile.

wasn’t it just a few weeks ago i was telling people up north that if they saw russ, he still looks great; he would appear different in that he is mostly confined to a wheelchair but he still looks normal otherwise.... who the he// was i fooling? it’s amazing how our brains let us believe what we want to believe. perception is truly in the eye of the beholder.

i talked to unk earlier today and he confirmed my suspicions. he indeed did pick the best he could of russ and he had a hard time at that. well, i would just like to remember my dad the way i think he should look, not as he does.

changes in routine

tonight joann, russ' usual HHA was unable to come as she was moving so a different aide was sent. she was very nice and seemed to have had experience with AD patients as she talked slowly and kept it simple. russ seemed to be ok with her yet he wouldn't walk or stand up for her. judy did exactly as i told and showed her, yet russ would only do those things for me.

after watching his behavior tonight i am beginning to think that that is what happened while he was at respite. i think he just didn't feel comfortable or safe with this new person. judy was too much of an unknown to him.

when i think about it it makes sense. not too much is clear in his world and he relies on constants and routines to stay the same. when that changes even slightly his sense of security also changes. i don't want to over think this though because tomorrow is a new day and the next time there is a change he may be fine.

now if i could only figure out his breathing patterns......

deciphering

life as a new parent can be very difficult. you have to learn how to distinquish different cries; are they hungry, wet, tired, uncomfortable?

caring for someone with advanced AD can be very much the same. sometimes i think it is even more difficult. with a newborn, they will eventually grow to be able to verbalize and tell you what's wrong. with AD, this will never happen, they will only become worse.

russ has had days like that. for him, he does not cry but rather has different breathing patterns. sometimes he pants like lamaze classes - that is usually an easy one as that is reserved for needing to have a BM. most other times he will either breath deep and slow or shallow and faster. either of those two are the more difficult to decipher.

at those times his verbal ability is either non-existent or he just babbles. it is then the deciphering really begins. is it physical - is he in pain, wet, hungry, or tired? might he be dehydrated or have an infection? is it environmental - is he bored or overstimulated, is it too noisy, too dark, too hot or cold, or too unfamiliar? or then again is it just the AD rearing up it ugly head?

russ has had one of these days this afternoon and evening. he even took a fall on the floor from his commode. i turned my back for literally 2 seconds and down he went. fortunately he only sustained an abraison on his upper arm. i have tried to make sure his physical needs have been met and also tried looking at the environmental ones. even the playing of music hasn't helped much. i'm hoping he's just overly tired and in the morning he will awaken to a new and better day.

that or that my deciphering skills will be sharper tomorrow!

dads say the darndest things!

it has been 3 weeks now since i stopped russ' namenda. bob and i both agree, russ seems more alert. or at least more appropriately verbal when he does talk. my sister, daycare and his HHA have noticed this as well. i stopped the aricept 2 days ago (per MD advice) and will monitor any effects from stopping that.

since returning from respite i have noticed russ starting to get some of his quick wit back as well. i can still remember vividly how russ used to always be the jokester and have hysterical one-liners. for the most part, those have long disappeared. my sister stopped in at his day care yesterday. when russ saw her, he said "well i'll be damned, it's you!" today sue met me at the VA when i had russ there for a PT evaluation. this was mainly for them to re-train me on proper body mechanics when transferring russ when he can not be of any assistance. (like when he was at respite).

sue met us there and when he saw her he smiled and opened his arms wide. she asked, is that a big hug for me?" he shook his head no and said "my, aren't you getting wide!" i could hardly contain myself. we sat down and sue started talking. she has always had a habit of talking loud. after a few minutes, russ tapped her on her knee and said "TOO LOUD!" out of the mouth of babes.....i told my sister then that i knew what i would be blogging about tonight!

time will tell, but i hope things will continue as is with stopping the aricept as well.

short term memory loss

last night and this morning were like any other day. russ slept peacefully through the night like he normally does. he woke this morning with a smile on his face. i got him up, dressed and sat outside with him while we waited for his ride to day care. i talked to him about the sounds we could hear; birds, a train whistle. "no" russ corrected me, "a train and a train whistle." he was right.

i called daycare and he was adjusting back into his routine just fine, smiling, happy.

he arrived home from daycare about the same time i got home from work. he ate a good dinner as usual and is now listening to music. he seems peaceful and happy.

i mentioned something about the "spa" he had just returned from and he looked at me and asked "i did?" i guess the adjustment back to our home routine has been smoother than i anticipated. i'm so relieved. i also guess this is one time i thankful for his short term memory loss.

p.s. unk is home and doing fine. most likely acid reflux problems. thank goodness!

back home

russ is now home. he seemed to get along fine for the most part at the inpatient unit. the nurses said they just loved having him there as he sat out at the desk and kept them company. there was also a student volunteer who spent a lot of time with russ. he did fall at least once and has a bruise/scrape on his arm. his home hospice nurse, janine, will talk to them and see if she can't learn more about what happened. it really made me feel good to know she was concerned about him and how he was treated while he was there.

the interesting thing though was that for the week + he was there, russ wouldn't walk for them and made it difficult even standing for them. i was told he was a 2-3 person transfer/assist at all times. when my sister and i brought him home i was worried how we would get him in the house. well, not to worry. russ got out of the car and walked from the car, into the garage and into the house with no problem what so ever! makes you wonder why he wouldn't do it at respite. would they talk too fast to him?, not give him enough time to process what they wanted him to do?, did he just like all the attention? or was he just being plain stubborn? one of the many mysteries we may never know.

on a worrisome note, i got a call from dunk today. seems like my unk was having chest pains last night and was taken to the hospital. it appears that it was not a heart attack so that is encouraging. he had a chemical stress test today and will have it repeated again tomorrow. i talked to him tonight and he sounded good but anxious to go home. please say a prayer for my unk. i'll keep you posted. thanks.

up north

(views of lake michigan off the deck of my parent's house)











i am home now. got home late last night. i really didn't want to come home, not because of russ, (i'm actually looking forward to seeing him tomorrow), but because it is just so darn beautiful and peaceful up in door county. bob and i really hope someday to retire up there. there is a part of me that is a real loner and i can see myself going for days without having to worry about anyone else. i don't know, maybe that makes me more selfish than a loner but... before i got married i would go up there for an occasional weekend when my parents were gone and not see or talk to a single soul and just loved it. i thought i would share a poem my mom bought me several years ago. she had a print of it and the first time i saw it i told her i wanted one. it took her about a year to find one but it is just so meaningful to me. it's how i feel about life in door county, wi.


"Up North"

There's a lot of talk about "up north."
It's the place everyone seems to want to go to escape the pressures and frantic pace of everyday life. But where is "up north?" For "up north" is not so much a location as it is a state of mind.
So how do you know when you've arrived "up north?" When you feel the cares of the world begin to slip away... When you find yourself breathing a little deeper because the air seems purer somehow... When you notice that the sky is bluer, the pines are taller and the people smile a lot more...
It's then you know you're "up north!"

Arlet Steel

my days so far

i have been gone for 4 days now, 3 full days up at my parent’s lake home in door county. even though it has been hot and beastly humid it has been so wonderful to be up here, yet different. my days so far have been very quiet and relaxing. my routine has been simple. i get up and have some coffee on the deck looking out over lake michigan. it is so quiet and calm in the morning. i usually then walk the beach. sometime during the day i make my trip to the cemetery to see and talk to my mom. it is emotional yet comforting. i am finally beginning to relax and feel at peace. i went out for breakfast one morning by myself, something russ really enjoyed doing. yesterday i went to lunch with some of my mom’s friends, something my mom and i always enjoyed doing together. bob and the boys are in a golf tournament during the day so it leaves me to myself and my thoughts which i am totally enjoying. the late afternoons and evenings are spent with bob and the boys; talking, laughing and just enjoying each other. bob and i feel so blessed that they still enjoy coming up here and spending time with their parents.

i am especially remembering the summer of 1980 when i changed jobs and moved from illinois to wisconsin. i had contemplated going back to grad school but decided against it so i just took the summer off in between jobs. i ended up living up here with my mom for the summer. russ was still working so he would come up on weekends. what a great summer that was for just my mom and i. we did so many things together, taking long walks on the beach, shopping, playing golf in the mornings and then going out to lunch afterwards, sharing the dinnertime cooking and trying new recipes. i think we really got to know each other that summer, not only as mother/daughter but as two women, and shared so much.

i have also called and spoken to the in-patient hospice unit as well as talked to my sister. russ is faring ok, but sleeping a lot. the nurses are great, maybe do things differently than i do but i know that i can’t control how he is cared for 24/7 if i’m not there. i do feel he is safe, so that is what is most important. he will not be there forever, i will come home and we will return to our routine, whatever that may now be.

for now i look forward to my remaining 3 days up here, doing much the same as i have done; relaxing, reflecting and recharging my battery. i am not sure when i will be able to get back up here so i want to soak up as much of this wonderful bit of heaven as i can.

vacation/respite

tomorrow morning my family and i will be leaving for a 9 day vacation (2 weekends and 1 full week). russ will be going to respite for that time at the hospice's inpatient unit. i am REALLY looking forward to it but yet it will seem so different. what will i do with all my free time!!!!

russ has gone to respite twice (we tell him he's going to the spa) and has done very well but never for this long a time. he is entitled to his 5 days of respite under hospice but i will extend it an extra 4 days. as excited as i am, i am also feeling a little anxious and apprehensive. how will he do for that long of time? what type and how long will the adjustment be for russ when we return? will he decline more being away for so long? all these unknowns are what i fear. time will tell.

all i know is that since my mom died my immediate family has not had a vacation together, just the 4 of us. a few months after my mom died we took russ down to south carolina with us and he did great, even with the 17 hour drive! last summer we took him to his house for about 10 days and he did ok. this year, even the 3 hour drive would be questionable. it will be different, being up at his lake home without him and my mom but i'm still glad we are going. it will hopefully be a great break for all of us and also to spend some quality time together.

we will take one of my son's laptops so i will periodically drive somewhere where there is a wireless connection. i know i'll go thru terrible withdrawal if i can't stay in touch with all my AD friends! you all are my lifeline. take care all and keep posting! i'll be in touch.

surprises

surprises can come in many shapes and sizes. russ has been receiving many GLO cards (greetings for our loved ones) from all over the country on almost a daily basis. today he received 2 that really surprised me though. one was from one of the nurses (lynne) on the inpatient unit of hospice that really took a liking to him. i had explained to her about GLO and obviously she remembered. the other was from a grade schooler in california. one of the family members of a GLO participant is an elementary school teacher and so she had her students create cards and then she mailed them out personally without the students knowing who they were specifically going to. russ liked them both but really seemed to enjoy the one from "daniel". he sat looking at it for almost an hour!

there can be other surprises as well. after dinner tonight, he looked at me and said as clearly as i have ever heard him speak. "i have a surprise for you." unfortunately my nose guessed what it was before my eyes saw it. like i said, surprises come in all shapes and sizes. LOL.

not a typical wednesday

usually wednesdays are my days to catch up on things at home and have a rather lazy day with russ. i work the other 4 days a week about 6 hours/day while russ is in daycare. yesterday started out seeming like a typical wednesday. russ' hospice nurse arrived at 8:30 am as she usually does and fortunately for me she had an unusually quiet day so she was able to stay and talk for almost 2 hours! we discussed a whole gamit of things ranging from russ to our personal and professional experiences with death and dying. especially over the past couple of months i find myself really looking forward to wednesday mornings when janine is here. she is so easy to talk to and we have gotten to know each other so much better, not just the superficial stuff. i know she will be a tremendous source of strength and comfort when the time comes near for russ to end his life here on earth.

after that the day just kinda blurred together. the phone seemed to ring more than usual and i seemed to take 1 step forward and 2 steps back in terms of getting things done. the hospice aide had a busier day than usual so she was later than she usually is. not a big deal but there went my planning for things. my sister sue dropped by to see russ but there was a lot of things we needed to go over so that took time as well. and of course there was the usual laundry which i only got halfway through washing.

then before i knew it celia and her dad glen had arrived as well as the home health aide. don't' get me wrong, i'm not complaining but i suddenly realized that even though i enjoyed seeing everyone, where did my day go? what did i have to show for accomplishments for the day? the next thing i knew bob and the boys were off to the office to do some work and i sat down at the computer to write yesterday's post. before what seemed like just an hour or so, they were home and i looked at my watch. it was 11pm! where did the day go?? i still had laundry to do, a sink full of dishes and had yet to take my shower for the day. oh well, at least the dip in our pool felt good at 11:15. i barely let my head touch the pillow before i'm sure i was snoring. 5:40am came awful soon when russ was to wake.

though the day was not as routine as usual, russ did extremely well. he didn't seem to be as near as frustrated as i was that the laundry didn't get done, nor the dishes and at least he got his bath for the day! well, there will be other wednesdays and many more days when the routine as i know it will be altered. just when we think we can anticipate things, they will change. i'm just glad russ fared better than i did. at least i got my shower this morning!

celia

a few weeks ago i saw a post on the caregivers forum from a young woman (age 16) wanting teenagers of ADLO to contact her if they would be interested in speaking with her. it seems she was planning a cross country trip and wanted to talk to as many young people as possible. i copied and forwarded the post to my sons to reply if they were interested. well, monday mark called me at work to see what we had going on today before dinner. it seemed celia would be driving through wisconsin and she wanted to stop and talk to him.

what an impressive young woman. she and her dad glen are traveling across the county this month so that celia can speak to teenagers. she will be a senior in high school this fall so they will also be touring colleges. their family is from massachusetts and celia and her dad will travel the northern route out west, head south through california and then go home via a southern route. they anticipate they will be gone for about 4 weeks.

celia lost her grandfather(glen's father) to EOAD 5 years ago after a 12 year struggle. for about a year celia has been volunteering in a dementia unit of a nursing home and has noticed that very few teenagers come to visit their grandparents/loved ones. she wants to write a guide and have it published to help teenagers deal with this disease and help them to understand what is happening to their LO's.

they were here for about an hour i guess and mark and celia spent most of the time at the kitchen table. celia interviewed mark about his impression and feelings about AD, and his relationship/experiences with russ. bob and i had the opportunity to spend that time with celia’s dad glen. he was very kind and appreciative of us opening up our house to them. he though should be given a lot of credit for traveling this summer with celia to make this a reality for her. this is going to be part of a senior year project.

WOW is all i can say. a lot of people don’t give our current youth enough credit but this young woman is simply amazing. in the short time i spent with celia and watching her interaction with russ i could tell what a sensitive and compassionate young woman she is. she got down on her knee to be eye level with russ and touched his arm as she spoke softly and slowly to russ. good luck to you celia in whatever you decide to pursue. you are a very mature, insightful and wonderful young woman. i look forward to reading your guide. i'm sure it will be very helpful to teenagers and adults alike!