MORE RECENT UPDATES IN THE COMMENTS SECTION
Oct 23, 2008 12:44 PM
reminding me I have friends that want to know what is going on.
My prior absences have been due to HUBBY's ever fluctuating health
Marc has taken a few turns for the worse. He had emergency surgery a bit ago (I think I mentioned it) and the removed part of a strangulated bowel and strangulated hernia)
Just what a bleeder who won't heal needs- surgery-
I may have mentioned a nephew and his wife that was care giving for us? They decided to move on , and we hired a new caregiver J.. K (the nephew) was in the process of moving out of the cottage this month. K and J are like family, so J would go out and visit with K from time to time.
Monday 10/6 J (new caregiver also like family) came running in the house and informed us that K was not breathing and bleeding from the mouth. We did CPR but were unable to revive (I was on 911 call at the time) K died 10/7 @ 3am.
Marc's family went ballistic. The memorial was 10/11 I was instructed NOT to attend (the family has disintegrated)
Marc came home from the memorial a bit confused, but not bad. Every day since he has gone farther and farther into a coma-like state. Except he walks (paces almost all day and night) and drools and pees everywhere.Can't be trusted with anything in the kitchen and thinks he is perfectly fine.
He is very resistant to any assistance, even when he really can't do something (I am so tired of getting peed on)
I finally got 5 hours of sleep last night (after about 4 days of none) when he laid down and slept.--hooray for that--
This morning he is no better and I am waiting for a call back from his Dr to see if there is any help available for me since 2 people can't take care of him 24/7 and I can't afford a third.
I may have to put him in a secure living arrangement until he "comes back" as he has done many times over the years.
I don't know if I can even get him in one and I'm not sure if medicare will pay for it so..................
extra bit.
you may recall Brian ws our caregiver for a long time and he died in our home a few years ago-we found him and did CPR then too. (brain tumor) seems it's bad luck to try to take care of Marc, (attempt at humour)
Ask any questions you like- it seems to help
He is in end stage liver failure. But the "losing his mind" part has happened many times over the years. never lasted this long before though. Not sure why it happens Dr doesn't know either.
We have a meeting with his Dr next Friday (if I make it that long) to evaluate Marc.
I don't know what my choices are and his family is no longer involved in his care so we muddle through.
Oct 24, 2008
today's development
Marc found the truck keys (how the f*** did that happen?) and was out in the truck and had it started before someone caught him and stopped him!
J ("caregiver") seems to have run away from home?
I made him mad last night when I told him he wasn't taking this seriously enough. that and he let Marc have his pill container (which holds his meds for the day- separated into 4 doses-) at 2 pm yesterday-
keep in mind he was told specifically not to let Marc have the pill thing -just the pills when he was supposed to take them--- I get home and no-one knows where the container is- which had the 8 pm meds and the 2 am meds in it............................
..........Including 2 100mg Morphine pills-- just what I need floating around the house!
Oct 27, 2008
Sunday was a pretty good day- I got Marc into the shower (really needed that) and he ate some food. we even had a conversation of sorts.
This morning he is back to the previous state, (and a mess again) and now he won't even co-operate and take his meds.- he had been doing that at least.
I'm in contact with his Dr and we will see what he has to say. I am hoping to get him in before Friday, but I'm not sure that is going to happen.
I told my boss that I might have to take some time this week if my son can't handle taking care of Marc by himself. The boss and his brother both asked me why I didn't commit him over the weekend (so sensitive they are)
Thanks for the thoughts. I am trying to find resources here, but we are a long way from the city-which narrows my options.
They were more concerned that I would miss work than having him committed for my best interest. (couldn't see the doc on the weekend)
I have an appointment with Marc & his DR tomorrow 130 pm . I think his doc will admit him to the hospital for observation.
We'll figure the rest out from there.
I'm looking forward to having him out of the home.
He scares M (our daughter) - her and her dad used to be best friends now he's a weird man to everyone.
I called Marc's mom to let her know what was going on and she was not as supportive as she could have been. Somehow when I said I couldn't take care of Marc she quipped back that I had always had someone else do it for me. I have always pulled my weight in that department. AND he has never been this bad for this long.
She has no idea how many nights I've gone without sleep and went to work the next day. (no one else volunteered)
Turns out the J tells people that I kicked him out-- really why on earth would I do that? we had a disagreement and he ran
Oct 28, 2008 3:53 PM DAMN
We had our 1:30 appointment with Marc's Dr today. Marc decided to 'come out of the fugue' just enough to talk to his doc. Marc had put clean clothes on himself as well. The charade was lost when Dr examined Marc and we discovered he was still wearing his urine soaked sweats under his clean pants.
After 2 hrs of talk etc it was determined that there is no reason to admit Marc at this time. He has been given a warning from his doc and me that if he 'checks out' like this we will have to put him somewhere. I have some people I can call to 'assist' occasionally (they won't be able to do anything either but oh well)
So the roller coaster ride continues.
We are trying some new meds that might help Marc calm down and sleep through the night (hope they work!)
My son is the only help I have right now (he recently returned from basic training)
Oct 29, 2008
las night we talked very little, but he did take his meds and eat some dinner.
about 9 pm he slid back into his fugue. I napped for a few hours while Karl watched Marc, about 3 am Marc came in the bedroom and peed in the garbage can so I knew it was on again.
He just paces from one end of the house to the other, our bedroom through the living room through the kitchen and back to M's room. When M is in there I have to block the door (physically) to keep him form going and sitting on her bed (he scares her)
Every 5 minutes from 3 am til 530 am (til he knocked me out of the way and went in- so I woke M and put her on the little couch with me)
K was unhappy when I woke him at 730 to take over but he is being really good about it. -He expected Marc to drop back into his fugue- That is why we were disappointed that Dr R didn't admit him for tests or something!
I have a list of people to contact (per Marc's doc) but so far I've called 3 and they can't help me. The one place says it's medical not mental so they could not clear him physically to be admitted to their facility.
Hospice says he hasn't been given 6 mo or less to live so they are out of the loop til then.
i cried when no-one could tell me who to call
Oct 29, 2008 4:04 PM
it was so frustrating that Dr sent Marc home with me instead of atleast admitting him for observation.
One full day and they would have the information that I have been giving them verified.- since the bugger perks up whenever I take him in.
I'll try again to get the doc to atleast admit him to the regular hospital for observation and blood tests. It is all I can do right now it seems.
I have a list of in-home caregivers certified by the state.
I will try to contact them to see if they can help us out soon.
Not sure how that works but I keep trying.
This gives me a place to vent (and document) this ordeal.
Oct 30
This is helping, just writing it down where someone might read it (funny that)
I got home from work (yesterday) to find Marc had been in bed asleep since about 10 am I tried to wake him but he would not respond. the medication I gave him Tuesday night could make him sleepy for 16 hours and he was breathing so I left him alone and took the break we all needed.
A family friend was at the house and offered to take the night shift so we could all get some sleep (what a lovely man)
Michelle pushed me off the little couch about 10 pm so I was sleeping on the floor right next to the couch. at 3 am (see a pattern here) Marc got up and walked on me(I was well out of the way)- and fell on his backside next to his chair.
F helped Marc into his chair and assisted in putting his feet up. Marc went back to sleep and was still there when I left at 730 am today (Thursday)
The last time Marc ate/drank/or took any meds was 1100 pm Tuesday 10/28.
I think I have enough to get his doctor to admit him to assess his health with this-I'm going to try.
Hugs to my supporters
I just got a phone # for Sr & Disabled- this might be the beginning fo help for me!!!!!!!!!!!!!!
Subscribe to:
Post Comments (Atom)
33 comments:
He came back a bit today (just when the doc was going to sign the papers)
Just enough to be needy and demanding and torture me more. sorry guys but I'm really quite done with this role. Could the director yell "CUT" now?
Ok I have some humour left that's good.
I have some contacts and we will be getting some more help in the next month.
Updates as I need to vent?
Thank you for letting me read this i wonder how things are going everytime i pass your page in PR. If you don't mind i will keep reading this every couple of days
Hugs to you]
Janelle
Came back for an update. Wanted to let you know that we are praying for you in L.A. Missed you on PR the past few times I was on.
hug,
Rebekah
Things were looking up 11/5 I finally got a case worker from Sr & Disabled services. haven't talked to him yet though.
When I got home @ 5:30 wed (11/5) Marc is asleep in his chair- nope he's in a coma- called 911 they transported him to hospital. He is in ICU now unsure what will happen next.Marc was supposed to be in court this morning -due to the fender bender he got into in a parking lot here a while back-- (11/6) I went in and told his attorney he wouldn't be there due to the coma- they rescheduled.
Man I'm tired
Marc's Doc and my kids and I all know that Marc is ready to "go" but if he had died in his chair his mother and sister would have torn me to shreds
.As it is she bitched at me that Karl was not a fit caregiver (see any other volunteers? )and should be held accountable for Marc's coma
So we get him better so he can sign the papers (or as Marc's doc hinted last night a slight change in his prescribed meds MIGHT just take him over_I think the doc would be willing to help even.)
He is awake some now, not all better but he is communicating some.
more later
Oh sweetie, you are in my thoughts...I'm remiss in not calling you in a long time, I hope you're not mad... It sounds like now is not a good time to call, so please know I'm thinking of you and will call you soon - let me know if you want me to call sooner!
--bthyb (Beth from snopes)
I'm so sorry you're going through all of this. You're in my thoughts.
Ai yi yi, I don't know how you've had the strength to deal with all this! You and your family are in my thoughts.
Ren, I think of you often. I haven't been to snopes much lately, but you are one of those I love. Best to Miss Mouse.
Love,
Lettie
Signora Del Drago
thanks all i hope to be able to add some tonight as well
I was wondering how things were going for you. I don't know how in the world you have been able to do this for so long by yourself (with some help). You are in my thoughts and prayers. Take care of yourself.
Ann (tsfanpc)
will be praying for you, marc, and your kids. Thanks for keeping us updated.
guess I'm logged in as my husband...it's Rebekah
Jokerswild says -
Damn girl I didn't know what the hell was going on - I can only imagine the stress you must be under - I truley wish you the best and hope that things get better for you -I had to hunt you down through you'r last blog - Just to see where you been.
Sorry it took me so long.
God Bless you and your's Yeemum you are truley a trooper and I will have you in my prayers...JW
We have hospice on board now they wil bring the hospital bed next week. we will put it in the livingroom by the window. Keep in touch and I will try to as well.
Thanks all who have comented
Hospice is great they should be able to help a lot...keep us updated.
Rebekah
Thanks for your concerns.
Hospice is involved now. we have the hospital bed in the living room by the window. He has good days and bad days just going through a bad week now. It is nice to have a nurse I can call int he middle of the night, but I'm not getting much sleep. (No time off from work) the compassionate man that signs my paychecks is haveing a problem with the personal calls and my 'mistakes' since I'm not completely focused some days.
Hang in there my friend and know that we are here to "talk" to anytime you need us. - J
We are looking at end of days now. they put the cath in saturday and he is no longer participating in his own care. pain meds only now
I have never been blessed with the right words for these situations, just know that I am truly heartbroken where your concerned, and also know your my new hero.
(sincerly Blue@Orange)
They send a nurse 1 or 2 times a week and a volunteer 1 or 2 times a week. He is just on liquid morphine and ativan now. even that he has a hard time swallowing.
not eating or drinking really so it won't be long now.
I tiold my boss that we needed some sort of 'plan' here at work since Marc could pass at any time, the lovely man asked "what do you need?"
I said I would need to leave work when' he goes'. He asked me so" you'll need what 1.. 2..3.. days off then?"
I had no response for a bit, I stuttered and said "umm, I would imagine"
and walked away.
I can't sign in here when I'm at work sorry for the anonymouse moniker
Ok so today the Hospice team determined that Marc qualifies for respit care. this means they transported him to the hospital. He will not recieve any different care than he was getting at home.
paliative care only- no extreme measures. He can be there for 5 days, and if he is still alive there is a group home they may put him in.It all depends on what the team and I determine at that time.
it's been a long few months I'm glad I have this medium to vent and share my journey
:eek: :mad:
Got a call today from the discharge nurse. Marc's 5 days are up Sunday.
There is a foster home they can put him in here in town
That costs $3,000 a month!
I don't even make that!:rolleyes:
So I'll rally the family and see if we can get more help at home.
In the meantime the boss has me preparing the warehouse for our annual xmas party- I'm really getting all xmas feely (NOT)
basically I am the hostess of the thingy (since I've been here forever and his wife usually doesn't come)
I don't mind really just hard to get behind it this year.
maybe it will cheer me up? There will be drinking :)
Still no water at my house- maybe this weekend I can get something done!:confused:
I had a friend stop by while I was at work and 'look at it' but then he left and has not called me back? I'll call him latert I suppose.
Anyway thanks for letting me type away
they will be sending him home Monday by ambulance.
Great fun!
sending my love and hugs to you and M at this time keep us posted when you can - J
RIP Marcus
3-2-62 - 12-25-06
Hi...this is BoltBacker21's wife. I'm so glad the two of you were able to talk on the phone this evening. My heart goes out to you. Reading through your last post breaks my heart. So glad you made it through. Please know that we are here anytime.
Love,
Blaine
Mrs BB21 ( You rock.
Hug that man for me .
and be warned I might actually call
Ren,
My thoughts and prayers are with you.
--Ed Hardiman
Ren, I am torn over your hard life. I feel so bad and I'm not in any good situation to be of any help except to talk and offer you my shoulder, or anything else you need hehe. I will be calling soon so I'll get with you then. Seems you have a bunch of people here who cares and you can count me in there too.
Marty
Hugs to you and M you are both special people and i am here if you ever want to "talk, cry or scream" Love to you both - J
I am so sorry, about everything that has happened. And of all the days, for it to be on Christmas...
You're in my thoughts. We miss you at snopes. Take care.
Post a Comment