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The Hospice Journey
A personal experience story
by Betty Baareman

My name is Betty, caregiver and wife to Ken of almost 50 yrs, (anniversary is Aug 6, 2004).

For months now, I have studied every aspect of Hospice, but have not dared to approach the subject to Ken.  Will he think I have given up?  Will he think I want him to give up?

We have fought this fight for many years, the last 8 or 9 years being the hardest.  In and out of the hospitals.  Five times last year and two times this year already.  Pneumonia, exacerbations, etc. 
This time, no pneumonia, no CHF, just temperature and SOB.  A long two week stay and no sign of improvement, can only walk a few steps.

One morning the Dr. came in and squatted down to our level and talked softly and asked if we thought about future care and what we wanted.  Ken just said no vent...... I very hesitantly said I had checked into some Hospice stuff and he picked up on that right away, and said he thought that was the best way to go...

According to the pulmo, when you go in and out of the hospital more and more frequently, the body is trying to shut down, but we pump it back up, over and over until we are to tired to go on.

Then you know, it is TIME, almost no lung left, no room for air.  Time for that phone call to Hospice..........
what happens next, continued tomorrow.

Had a trying day yesterday, developed pain in chest, had three nitro, and they didn't touch it and then shots of morphine twice before pain stopped.

But they haven't given us much explanation. Didn't think it is his heart but I noticed they did another EKG today.  He is very weak, takes all his strength to talk.  Very emotional, we have a big family, 7 children and they all have been wonderful.

If and when he comes home they have already got visiting nurses in place so I will have some support.

My daughter said Mom, no one knows what you go thru, and I said, yes they do, on my Support Group........Bless you all.


The Hospice Journey and End of hospitalizations - March 6

This is going to be short and not so sweet.  After two hospitalizations this year we have been told there is no more they can do.  Kens lungs are gone. He is being transferred home by ambulance today and put into Hospice care............... hard to realize no more trying to get better. Our family is pulling together all trying to help all they can.  I will update in a few days when I can get my own emotional state on an even keel.  I fell in the living room and injured my sternum and ribs and am sleeping in a recliner, nothing broken but sure have got the pain.  My one daughter is moving in to help for the next week.  Please Prayers.

The Hospice Journey - March 10
.
The decision is made. It may be a long road or a short one..  None of us knows.  The next morning, the head of the hospital hospice came in to see if we had changed our minds overnight.  They go over the hospice plan many times so that you know what you are doing. then you sign the papers.  But at any time, you can sign another paper and you are all done and out of it.  Then if you want hospice a 2nd time, they do not hold it against you. you can enter it again.. nothing is written in stone, as they say.  The only requirement is that the Dr. thinks you have six months or less to live.
At that point, they go over supplies you will need. a walker, paid for by Medicare, then we chose a bed, egg crate mattress and a commode. They notify the medical equipment company and set up delivery.  And then keep you in the hospital until everything is in place.

Now the ride home, we went by ambucab.  The Dr. felt he was too weak for a car....  He was quiet and subdued, looking at everything as if it were the last time.
My daughter rode home with him and said he had the strangest look she had ever seen on his face. Like he couldn't take enough scenery in.  Since then he has remarked several times about no more Drs. or hospitals.  I am not too sure how he feels about that.
We got him home and in bed and settled.  Lots of family around.  Lots of confusion.  Myself, who is usually on top of things became a dis-boggled mess.  Couldn't think or remember anything.  So be sure to have family with you at such a dramatic moment in life.

Me, in the middle of the night I cry and weep when no one can see me, exhausted from hospital visits, emergencies, meds, etc.  Just from this life as a caregiver but would not have it any other way.

Tomorrow I will tell you about the meds they cover, and the visits hospice makes.  Already, I am thankful I am not carrying the full load.

I am so very very tired.

The Hospice Journey - March 11

My Love is tucked away for the night so here goes.

The 2nd day, the RN nurse sat down with my 4 daughters and myself as we all want to learn.  We go over the med list.  Hospice covers all meds that pertain to the diagnosis that hospice is hired for, thus COPD.  She was surprised that we knew the right terminology, but we are old troopers.  These are the meds they are covering for us - Advair, Singular, Combivent, Albuterol, Atrovent, Theopphylline, Predisone, Cipro{antibiotic}, Morphine and Ativan.  Also will take care of all oxygen, nebulizer, and the bi pap machine, upkeep, etc.  I have been frantic because his supplement drug insurance runs out May 30, and of course he is uninsurable, so this is an answer to my prayers.  I will load up what I can before it runs out.  I have always wondered why Morphine was given to dying patients, did they have pain?   But was told it makes the breathing less sob, a half of a dropper under the tongue, followed by an ativan, and then call the RN. 
We developed a incontinent problem and they are supplying pads for the bed.  We have to buy the drugs for diabetes, high blood pressure, etc. anything else.  We are going with only Medicare now, as he will not need hosp insurance or Dr. call insurance, only if he broke a leg or something like that.

The nurse has been here for three days in a row because of gunk in the lungs, fluids, and the pharmacy from hospice delivers all night all across Michigan as far as Indiana.

It is good to know I will not have to call an ambulance again, or rush to the hospital and now he is getting better care where it used to be Ken and I and the Dr.   Now I have this wonderful source of help at my fingertips.   No more caring this load alone.

Tomorrow, I will tell you about the aides, nurses visits and the frequency of them.

Until then Bless You all, and Love ya.
Betty

The Hospice Journey - March 12

Well, I promised to tell you about visits from Hospice.  Even though we still are quite new, only a week now into it.  In the hospital it sounded like we wouldn't hear from them unless we called them.  This is not the case.  They immediately set up three visits a week from the RN. But due to congestion and pneumonia, she has been here every single day.  She also explained some Drs' will not prescribe antibiotics to a hospice patient, and some will with no question.  Luckily ours will.  She is hoping if we can get over the hump and stabilize, we can buy some extra time.

The aides were set up for 3 baths a week.  We could have 5 if we wanted to.  They have been excellent, I just set out towels, nightys, etc. and disappear when they come in.  They talk a lot to make the patient less embarrassed to be given a full bed bath.  I always thought I would do all his care as I once did 8 years as an aide but being older and tired, I willingly let them help out.  I also think Ken enjoys talking to outsiders and the nurses even though his voice has weakened.

Now the social worker only comes ever couple of weeks if she sees no problem but the nurse said her main concern was me........ that I might burn out as a caregiver.  duh.......  I  am human, of course I will. Ken seems more content than ever now, resting in his hospital bed by the slider windows watching the large snow flaxes flutter to the ground, and listening to music.  This has been a big thing to him lately.  He loves country gospel, old time hymns.....  All is well, at least holding.

Tomorrow I will tell you about some personal stuff and feelings on my part.

Till then..........

The Hospice Journey - March 13

Well, let me tell you about the things I did not expect.  I expected it to be easier not chasing to the hospital all the time.  Ken has always taken total care of his meds, shots, etc.  He has always gotten up at night alone and done his neb treatments, I would arouse enough to make sure he came back within a reasonable time and could see him at his desk across the hall.

I first realized I would no longer sleep in my bed ever till its over.  He has a bed in the living room, and I could not hear him and do not want to use a monitor.  He is so independent, he would probably try to get up to not bother me.  So I am stationed on the couch.  And need to quit feeling sorry for me... but I keep thinking about how my side of my bed feels.

I now set the alarm for 2 a.m and 6 a.m. and get up, set up his neb, get him a drink, help him on and off the commode, wash the equipment, tuck him in and am still learning how to go back instantly to sleep for another 3 1/2 hours.  It feels like when you bring a new baby home from the hospital.  My body after this first week is just starting to adjust.  But I have never been so tired in my life, combination of everything.

The next awakening was the amount of company the work hospice brings.  We have a constant swinging door.  I apologized to the nurses for having people here every time they come but they said they love it.  As a lot of places they go, the kids don't care, or the patient has little family. We have 7 children, 26 grandchildren, not counting spouses, and 9 great grandchildren plus friends.  I made up my mind right away I wasn't playing hostess and the kids just have been great at helping carry in groceries, putting them away, helping with housework.  But I never anticipated the busyness.  The nurses say it is this way at first, then it cools and hopefully they are all there when they are needed later.

I also had to start drawing insulin, and learned to give a shot, was easy, but I was leery.

So, maybe I could have planned for some of this, but wake up now Ms. Betty.

till tomorrow and I will tell you medically what they do for a dying patient.

The Hospice Journey - March 14

Today we hit a big RUT in the road on this journey........feel like I am still in the ditch.  We expected 4 relatives from Detroit, a three hour ride from there to here.  They said they would arrive about noon and to have the coffee on.  Well, I swore I am not going to become a hostess but I couldn't let them sit till their return trip without something to eat.  So I simply forewarned them that I was fixing only barbecues and chips and drink.  Then 2 daughters offered to come and help which was fine, then this family and that family began popping in.  Granted on Sunday it was always ok to stop to Grandmas house anytime but this is different.  By the middle of the afternoon, we had had 29 guests coming thru that swinging door.  Ken had trouble breathing and so I just got up and gave him morphine and ativan at which he settled down but somehow I have to keep this from happening again with out making anyone upset.  So caregivers, think about some plan before you get this far..........

In the middle of all of this his RN came, and she even felt sorry for him.

I want to tell you three things I have been concerned about.  Choking, Secretions, and Pain to happen to him.

Well, the nurse sent out patches the size of a dime called Transderm Scop to help dry the airways.  They help some.  They have to be changed every three days.

The morphine can be used freely, just dropped by an eye dropper under the tongue, and it takes thirty minutes to work - followed by an ativan, a sedative and it really helps put them in la la land.  The nurse said this is usually given to post op patients to relax them.   He also had huge toenails, of which they came out and ground them down with an electric sander. This is really comfort care.

Till tomorrow.

The  Hospice Journey - March 15

Well, now that I have let you in on what I have so far learned this is going to be off the top of my head.

Let me first add from yesterday some info about the patches. They are about the size of a dime but I forgot to tell you that they put them right behind both ears near the blood vessels and you change them every three days. They help some.

The nurse that was in here yesterday looked at our med list of 17 prescriptions and remarked that wasn't so many and that she had seen some with lots more.  Maybe so, but I sure would not want to pay for them.

Another thing I am going to have to get used to is NO URGENCIES,  A couple of days ago Ken ran a temp and before we would wait till it got over 100 and call the Dr. and he usually would send us to ER to be checked out.  So frantically all day I waited for her and she just said, just take Tylenol.

No big deal...... Also he had trouble breathing all day, and she just said, did I give him morphine?  I thought it had to be more dramatic sob so I did not, so she preceded to give him some. Make him comfy....

Next we have always watched the diabetes numbers, and she wanted him to drink thick liquids so they don't travel to the lungs and suggested milk shakes,  Boy, was he happy about that.  So off to Mc Donalds and he drank one and his sugar went to 475. I was frantic.  So when I told her the next day she just said, yes, I expected it would, just be sure to give him insulin to counter act it..... 
THERE ARE NO EMERGENCIES ANYMORE....

That is very hard for me to get used to.  When you are a caregiver, you always have that watchful eye tuned into every cough, every breath.  You sleep with one eye open, seeing if his chest is going up or down, you think about them when you are out of the house.  But that's the path we have been given in this life........ and we do it out of love.

The Hospice Journal - March 16

story is temporarily on hold -

Guys and Gals, Major, Major medical things going on.
Patient out 9 hours in low induced sugar coma, will up date asap.

BB
 

The Hospice Journey - March 17

Boy, have I got a story to tell.

It is unbelievable but totally try.  I put Ken to bed at 9p.m. and I woke him at one for a treatment and then he went back to sleep.  At 5 a.m. I went, and I am in the same room, to his bedside to give him another treatment and found him unconscious.  I quickly started the neb and put it on with a mask to free my hands,

Then did a check on his sugar.  Normal or good sugar should be about 120.  His reading was 2, yes, I said 2.  Seconds and minutes away from death.  I frantically called the hospice nurse who instructed me on grabbing pancake syrup and sweetened jell and filled his mouth with it and then I had to put the bottle to the rectum and fill the cavity.  I was so powered I managed to roll his heavy dead weight body over alone, while a phone in the ear, listening to the nurse.  She sent another nurse on the way who arrived in less that ten minutes.  She flew thru my kitchen and grabbed a handful of sugar and filled his mouth swabbing it to the inside of the cheeks, etc. --- said she wasn't afraid of this man having aids, no time for gloves, then she raided the frig and got cola and put that in his mouth being careful not to have him choke.

Then we sat and talked, --  what did I want to do.  If he had been down in this sugar coma very long, he would be brain dead or die.  I told her he would be really upset if he woke up in a facility.

continued on Segment 2 because of time limit.
 

The Hospice Journey - Mar 17, Segment 2

I hate this time limit. No time for spell check.

She asked me what I wanted to do, - I said let him go............  So she had me call our children home and she and I began cleaning him up, in prep for the funeral home, washed sugar, and syrup up.  Then the children came and we sat quietly around his bed, all 7 children and their spouses, crying, etc. holding each other knowing Dad was leaving this day.  We also put on his Randy Travis gospel tapes for him to listen to as the hearing is the last to go.  He was out and about 5 hours later the asst minister came, prayed for a peaceful going, and about 3 hours later the minister came and prayed again, holding hands around the room and around Dad.

About the time he said amen, my Ken opened his eyes, and said I love you all, in a muffled sound.  As time progress he got wider and wider awake.  He was in the coma for a total of 8 or 9 hours and his mind is ok.  The nurse left earlier and just said she would call back to see what time he expired and we told her he was alert and awake.  She was overjoyed,  Thanks to pancake syrup???  and Gods blessing.

Later that day, tons of food arrived that was left over from a friends funeral at church and our family rejoiced and broke bread together.  Today, he is the talk of the nursing agency and Mr. Wonder child..........  Today he is tired and weak but with us.

I asked if he had unfinished business he came back for and he said yes, our 50th anniversary is in August................that's it................
 

The Hospice Journey - Mar 18

Well, a journey it certainly is and I didn't expect it to get this rough this quickly.

Yesterday I dealt with too much company, so I guess my advice is if you are getting close to this point to plan how you would deal with it and start out right away with the rules.  Like maybe a rest time in the afternoon where no company comes in.  We experienced a day yesterday where company mostly family were here almost all day and he got no rest.  So as of today I had to play the bad guy and ask that grandchildren and family please call first as it is too hard on Ken.

The hospice nurse said when the word hospice is mentioned, people flock to see the patient, then it wears off and you hope they are there when you need them.

I canceled out some today telling them he was having a bad day which was still going east and looking for a good truck stop to eat at, and he was headed for Tennessee today.  His favorite place to go.  The nurse has been here every single day except one day when she had a cold.  They go out of their way to do everything and we have yet to have a bad one.  Our main nurse even gave us her home phone number to call for emergencies.

We are giving morphine and ativan a little more frequently.  It seems to really help the breathing and relaxes him.

Not a lot of advice today but a little.

My o my, what a journey.
 

The Hospice Journey - Mar 21

Well, things are quiet here and not much to tell.  We are in a steady decline and our Hospice nurse calls Ken, her Miracle Child, coming out of a coma with out damage to the brain.

He says he has three things to do yet,
one -- get his clothes ready, he told me what he wants cleaned to wear, which suit, etc. which tie, and shirt.  Now I can wash and be pressing a white shirt without worrying what he thinks.

two -- he wants to write his own obit. and

three -- he read the papers in the hospice book and said all signs are coming true.   Loss of appetite, mobility, slowing down, etc.
Who knows, I can only take his word for it.  We have just showed him so much love this week.  Grandkids, kids, etc.  At least two of our married kids are staying with me thru the nights yet.

This is a wait and see game.  Who am I to say how soon or how far away this is all going to happen.

Will probably write less frequently, maybe every few days from here on.

Love to you all and yours.

The Hospice Journey - Mar 22

Well, here it is Monday, the weekend behind us and the family is all back at work and we are together, Ken and I dealing with his COPD.
We do have the patches on I spoke of earlier for secretions but they don't seem to be doing the job.

His chest is feeling fuller all the time and the nurse gave us a rather dangerous pill to take, called Levsin,  Dangerously because it drops the blood sugar and having already been in a coma once this week, I needed to feed him plenty and liquids before giving it to him.  It will take about 6 hours to work if it works.  And we need to check blood sugars every two hours and page her if we see we are in trouble.  Hospice nurse is always available, no problem getting attention now.

Sharon from Australia asked if he were afraid.  I do not believe so, He just hopes there is no pain.  He did ask for morphine on his own at 5 this morning for his breathing.  Normally he does not like to take it because it tastes awful and he said it made his heart pound but we now cut the dosage in half and it is ok.  He actually is getting better care than before hospice.

Her other question was how am I handling it.  At first, terrible, I got confused, tired. etc. but finally feel I am on a more even keel.  I don't want to lose him, but I don't want him to suffer and I try not to think of the loneness ahead...........

till next time.
 

The Hospice Journey - Mar 23

This is the hardest chapter I have had to write.  Things are not good and I don't want to scare anyone but big decisions have to be made here again.  We have been on this Levsin which dries up the pneumonia, but also drops the blood sugar so it is hard to keep an even keel.

The side effects is Ken is terribly tired and short of breath and feels just terrible.  The potassium level also drops.  We have to decide tomorrow whether to take a pill one more day in hopes of loosening the gunk up or stop and let the pneumonia take over, which the nurse said means he will suffocate in the gunk.

I don't want to lose him but I don't know if I can stand to see him feeling this badly, and am afraid to pray for a peaceful passing in fear my prayer might get answered and he will be gone.

Please, please pray for strength for our family.  My daughter is staying with me thru the night.

Why or why does this have to happen to us.  Many questions in wondering why?

It seems like a terrible nightmare.

There I have spit my feelings out on this typing.  It's there for all the world to see.

Help.  Please.  someone.

The Hospice Journey - Mar 25

Well, I just learned that this is going to be read by anyone internationally, so I asked Ken, do I be careful what I write or do I continue to pour my heart out, and he say, pour your heart out.

So, yesterday, unbeknownst to our children he had me write down his requests for his funeral.  He had been thinking about it and wanted to plan his own.  He had three songs listed, and wanted the minister to talk about these things.
First how good I take care of him,
then what a good life he has had,
then how much he appreciated his children banding together to take care not only of him but of me as well.
Then the joy he feels when he sees the grandchildren and how they always put a smile on his face no matter how bad hes feeling.
Also he express such appreciation about my brothers and sisters and how they have loved and cared for him like blood relation. His family was torn apart by rifts so it was really appreciated.
Can you believe anyone could be so open about their own death?

He presently is sleeping a lot.  We are having a great deal of trouble balancing the sugar levels with the steroids.  We are still taking the Levsin, even though it is hard on the body as the nurse says we have nothing to lose at this point.  He is beginning to rattle, it could be the pneumonia moving up, gunk, or it could be fluids which will take his life.

So we are in a wait and see game,  -----  only it isn't a game.

Our precious hospice nurse is going out of state for three days and left us her cell phone number to call if any problems.  Can you believe such dedication but we will still have a sub every day to visit.

Our hearts are heavy but we have such strong family support, that we will stand no matter what and we have a gigantic belief in God and his mercy.

til then

The Hospice Journey - Mar 27

Today in Michigan it is a dark rainy day but I am sure if the sun came out and shown across Ken's bed that we would wake up and everything would be ok.

Strange, what we tell ourselves to get over the bumps in the road.  I often wondered how we would know if we made the right decision to go into hospice but when you get to the fork in the road, you just know what path to take.

Ken had a bad night last night.  He continues to pull off his bi pap machine as he feels he is suffocating with it on, and his oxygen is hooked to it so he has to be watched with a watchful eye.  I eventually took it off for his comfort and he slept better after that.  He has been wearing it for about ten years.

My daughter stayed over and we split the night so we could both get about 5 hours sleep at least but knowing he was in trouble we were both awake and hated to close our eyes.

Caregivers, if you have relatives helping you, good ones... check out the Family Medical Leave Act on the Internet.  Our girls all have FMLA papers filled out by our Dr. saying they need to help out at times with their dad and then the employers cannot hold it against them,  they don't get paid for it which is the sacrifice they make in the name of Love.

According to the social worker, it takes 6 people to care for one patient so caregivers around the world, be thinking of whom you could depend on to help you out when the time comes.

A tired worn out caregiver cannot give their utmost to the patient.

I know, cause at times I am one.
 
cont-


The Hospice Journey - Mar 28

Well, there really is not a lot to write about currently, things have settled down and I guess you could say we are traveling on cruise control.

We have discontinued using the bi pap at least for now as it was causing more stress than not and everything is comfort care now.  He felt like he was suffocating in it, so now he is sleeping very peacefully at night.  Morphine seems to be used the most when we have a lot of company.  He thinks too many people in the room uses too much of the 02.

Today we discussed meds with the nurse.  Down the road as we progress, it will be harder to swallow pills and we probably will start to eliminate some that seem not to be so important and eventually morphine and ativan will be our main meds.

This man of mine has always had a huge appetite, probably due to all the prednisone he has been on over the years, he is eating less and less and he was always done before me and I noticed tonight he was eating long after me as it gets harder and harder to digest and eat and breath at the same time.  He has lost five pounds since I started this journal.

Till next time...........


The Hospice Journey - Mar 30

My heart lies low tonight as I sit at Kens bedside, unable to do much to make things better for him.  An occasional ativan or a dropper of morphine which he hates the taste of seem to be so little.  He does seem to be relaxed and very quiet and subdued.  He does still enjoy his Chrystal Lite tea which seems to be the one thing that satisfies his thirst.

Last night was not a good night, we were up almost every hour on the hour, mostly with his sugar being high made bathroom trips frequent.  Tonight another daughter will be here to help so I can catch up on some rest, although I leave my door open and hear every move made out in the living room where he has his hospital bed and she sleeps on the couch nearby.

The nurse discussed maybe an antibiotic for a few days, not to cure but to relieve him a little and make him more comfortable.  Hospice does all they can in that department. However this antibiotic will be the only prescription given one time.

Never think you can care for someone alone, unless your young with boundless energy.  I am blessed with children who are doing my yard work, grocery shopping and cleaning.  I am using all my energy to give everything to this man I have loved for 50 years and to heck with mundane chores.  Last night at the urging of my kids I went out to a ladies meeting, it did not go well, I longed to be home and could not drive my car fast enough to get back.

Just a thank you to the support COPD group for all your emails, even phone numbers to talk, and all your encouragement even though you are in much similar circumstances.  Even writing this journal at times is hard.

to be continued..............
 


The Hospice Journey - April 1

Well, it is April Fool's day but I am afraid this is not all a joke but for real.

First of all I want to say I think our Hospice nurse is really one of God's angels floating around here on earth.  I have not told her I am writing a journal till its over because I don't want her to feel intimidated by anything I say.  She gave us orders yesterday that if we have any difficulty during the nights re breathing that morphine does not help to call her at home and she will come right over to monitor Ken.  She lives very close by.  It makes it easier than having to call thru a service, that's for sure.

Yesterday Ken asked her if she were a nurse for only the terminally ill and she said yes, I am a hospice nurse, but a fighting hospice nurse as I believe in giving it a good try first to feel better, - but if I see that you are actively dying I will be very honest with you and tell you it is time to, then do all I can to make you pain free and comfortable and relaxed.  He of course liked the honesty she showed.

Having met most of our family, she said she would tell us when it is time to call the family to his bedside, but of course there always could be the element of surprise because when God says enough is enough, come Home.  Then it's time....................

The last three nights he has been very restless, sits on the edge of the bed a lot and needs back rubs, etc.  Last night we put a music tape in of a favorite of his to try to sing him to sleep.  He was awake till 5 even with morphine and ativan so probably will have to increase the dosage so he gets his rest. Of course the sun is now up and he is sleeping soundly.

Keeping track of meds, times, and nebulizer treatments is a full time job but I am doing the best that I can at that.........

Till next time, Bless and keep ya all..............


The Hospice Journey - April 4

Comfort is our final goal so we are working diligently to accomplish this task.

Living these past ten or more years with chronic illness has certainly been our way of life.  We were getting to be pros at planning and packing for any outings including going to our favorite place, Drummond Island in Lake Huron where two of our children live.  We would pack ten 02's of oxygen, neb meds, extra fittings, we also knew where the health care suppliers were on the way, also the hospitals in case of emergency.  We experienced getting an ambulance on the island which has only one ambulance and you need to catch a boat to get to the hospital.

Sometimes Ken would do a neb treatment driving down the highway.  Northern Michigan is pretty deserted anyway but occasionally some other passengers in cars would stare or give us funny looks but just like when we traveled with seven children in a station wagon, and you could see people trying to count heads.  I would hold up 7 fingers so they would not have to. lol, (meaning laughing out loud)..............

But now our days of traveling are over and are we now in "end stage"?
This description has been on our medical records for several years now and the first time you see it you sort of panic but caregivers, don't worry yet.  Dr's predict but the typical COPD patient goes to deaths door and then turns around and makes another recovery.  COPD patients are not put into hospice very quick because it is too hard to predict the six months or less of living unlike cancer patients or other illnesses.

I'm not sure we are end stage yet, but we probably are............

Update on Ken........  He took a nasty fall in the bathroom last night.  He only gets out of bed to go there with his walker but because of space we leave it at the door and he grabs the counter and goes the other four feet.  I closed the door partway and heard a crash.  He was on the floor, bleeding profusely from his hand and under the skin on his left arm.  I happened to have a son in law with me that helped me get him back to bed. So its bedside from here on..................... with being on morphine, ativan, etc. wobbly is the name of the game........

Not much sleep last night, --- In Michigan we have a time change and lose another hour but till next time, God bless all you caregivers around the world and your loved ones.

Betty


The Hospice Journey - April 5

After a hard hard day, I am not sure I can put anything together tonight but here goes.

Ken is sleeping and I am alone for the first time today.  Everything here seems to be going downhill.

When Ken fell the other day, we did not know that he passed out until we walked him again to the bathroom and he almost went down.  The nurse said he cannot walk anymore because he has so little space left in the lungs that he is too short on 02.  So we are now fully confined to the bed.

He is very weak, and talks in a very quiet voice.  He can barely eat, because the breathing gets so bad although he continues to drink very well.  The nurse has told me to quietly ask the kids to come home and spend time with him as much as possible, as things could be anytime.  If we get in distress a lot, she has ordered a medicine to sedate him, but of course that means we have to say good by.

He continues to show such love for all the family.  He has his daughters trained to rub his head all the time they are here and his sons sit at his bedside and rub his arms to sooth him.

I never thought it would be this hard to watch someone suffer.  If only it were me instead.

I thank everyone from California to Maine to around the world for their emails which help sustain me.

And I ask you all for your prayers. till then..................

Betty


The Hospice Journey - April 6

Yesterday, I failed to mention that a suction machine was brought in to try and suck some of the congestion out of the airways which seems to be our only option.  It is merely a machine with a motor and about a foot long wand made of plastic which you insert down the throat to relieve the patient.  I guess you know Ken thought it was a telephone pole.  We did not get any results and I believe it will be left on the counter top as an ornament if I want to stay married this 50th year to Ken.

Taking morphine and so many other meds has added to our constipation problem,- probably a delicate subject for family to read, but this is for the caregivers and it is a fact of life.  We are in trouble here and with such a full tummy it puts pressure on the lungs and makes it harder to breathe.   So after pills and pills today, he drank a bottle of nitrate which tastes awful, but we found that with a straw in the bottle it goes over the taste buds, clever huh?  He downed it with out a problem.  He had much difficulty today and was hard to breathe but we finally saw a little relief to that tonight.  When the lungs are fighting for energy, o2 or whatever they tell the bowels to quiet down, I need it..........and sometimes they can come to a halt.

My daughters made me take a nap today,.. but of course my mind whirled so much I could not sleep.  While I was down they moped the floors, washed clothes and cleaned the entire house end to end...........  talk about a nice dream to awake too.  Last night two of the boys stayed with me, --  now they are not boys, they are about 30 and 45 yrs old.  We had 3 guys snoring in sync................

Normally, my girls are all on a diet but they walk in the door with chocolate, goodies, and skinny cows {that's ice cream sandwiches}.  I think their nerves are on edge and this is their drug of choice. lol (meaning lots of laughter in internet language).

I am tired tonight, almost to tears -- but with a little sleep, tomorrow is a new day and a new dawning, and I must keep strong and upbeat which isn't always easy.  Sometimes I need a little cry in my kids arms when Ken isn't looking, but that's love.............

Our Journey continues and I hope I can continue to Journal.  till then.

Betty


The Hospice Journey - April 8

Well, things are getting quieter around the house as Ken seems to slumber more and more.  He sleeps almost 20 out of 24 hours.  He is awake long enough to eat, take meds and visit with family.  He still has an awesome sense of humor, still cracks a few jokes.  We were blaming the morphine for awhile but now he has not taken any in a few days and is still making us smile.  He has always had such a fighting to live nature.

The social worker was here today.  They make a visit every two weeks unless you want them to come oftener.  They discuss what ever may be bothering you and ask you if you have any thing unfinished that you want to do yet.  They also explain how the body, spirit and soul must be all ready at the same time to meet death.  She was in no hurry and stayed well over an hour and was very easy to talk to.

His big thing was if I would be able to adjust when he is gone and if the kids would continue to take care of me.  Two of our girls were here and they assured Dad that they would take up where he left off.  He told them he would be hovering over me above my shoulders to protect me.

There is still this debate about what to do about our 50th anniversary party in Aug.  He said today as he counted the months that it was too far away and he didn't think he could make it.  We again discussed maybe a small dinner with family and a cake and celebrate it soon.

She explained with him sleeping so much, that could increase to sleeping all the time and then it would be too late so we have to talk about that yet.

We all shed tears to hear Dad reveal his heart and soul thoughts and she also said how healthy to be able to communicate and talk about it.  We are also so blessed to be able to have the time, unlike sudden death situations, to discuss things and say good by.

What a change from rushing by ambulance to the hospitals, and all of that -----  Room full of para medics in the middle of the night.....

Tomorrow, I would like to talk about signs and symptoms of impending death.

Betty


The Hospice Journey - April 11, Easter

Hi everyone.  Well it has been a couple of days and things seem to have stabilized and so there is not a lot to write about.

We are certainly using a lot less morphine and breathing has seemed to be easier.  We don't know if this is a lull before the storm or just a patch of good days but we will take them anyway.

We had a very good Easter.  The ministers came on Good Friday and we had communion and today our girls brought in a beautiful ham dinner.  Last night one of the boys came and dropped a turkey into one of those deep fryers which seem to be popular in this part of the country right now. I know this is not copd related but..........  We have a lot to be thankful for and I am sure it is due to your prayers and emails around the world.   Hoping you and yours are all doing ok.

Will continue in a few days and remember no news is good news.

till next time.
Take care and breathe easy..........

Betty


The Hospice Journey - April 17

Well, I haven't forgotten about writing the Hospice Journey even though some of you have asked me that...........  But things have been relatively quiet here lately.  I was going to tell you about the symptoms of impending death but I am not ready for that yet and then I could tell you about my "Caregiver's Crash". but I am not ready to spill my guts about that yet either.....lol    --    with time I will, now that I have all the caregivers curious about what I will or will not confess..........

We did receive another prescription for antibiotics which the Dr was not really enthused to give us and I think it sort of quieted down things a little here. Ken still has fluid in his lungs, the lower lobes are full yet and the upper ones seem to have emptied out a little which is making life a little easier to deal with.

As I said before Aug 6, our 50 anniversary is weighing on his mind so the social worker suggested we celebrate early and if we make it to August, well, then party down again........  as much as a bed patient can party, right?   So, they, our children notified the church and a woman's club I belong to that they were having a card shower so our mailbox has been pretty full and fun to look thru cards from the most unexpected people.

Sunday, tomorrow, my five siblings and their spouses are coming over for cake and ice cream and fellowship, the most important ingredient.  They have been very loving and supportive of Ken throughout all these years of illness and he has a sister in law in Florida whom writes emails regularly from his diseased brother.

In two weeks, our kids are coming home for a potluck dinner.

Back to COPD, he does have breathing spells but the morphine and the ativan and extra nebulizer treatments pretty well control or help and he stays pretty comfortable.   We are still fighting the sugar numbers due to taking the steroids.

I love the pharmacy though from hospice, they deliver right to your front door, no chasing constantly to the drug store..........

Unless something eventful happens I will probably be writing about every seven to eight days for awhile  --  but I have not forgotten my promise to fulfill my commitment to this journal even if the days get rough.

Better breathing till then...........

As one correspondent says,
if you want to make your Dr. rich, Keep smoking.....................


The Hospice Journey - April 23

Life is moving on around here, we are taking one day at a time, one moment at a time as our wonderful moderator Kitty from Montana constantly tells this support group.  Bless her for all she does.

We are not worrying about tomorrow as we are busy facing the realities of today.

Last time I spoke of having the Caregivers Crash.  No, this is not a popular dance, it is something that probably happens to all of us giving care around the clock to a loved one.

I had decided no matter who asks, I am always fine........  ha, I am a human being with feelings like everyone else. I did not recognize the symptoms, tiredness, feeling of hopelessness, feeling on never ending agony, tearful ---  but my wise and wonderful eldest daughter did.  She came and picked me up after calling in a sub to take care of dad and took me out to buy a beautiful bouquet of spring flowers which in Michigan is irises, tulips, heather, and mums..........  they are like a spring of hope to look at..... then she preceded to take me for a ride and break me down until I finally broke and let it all out which is what she was after anyway.........  I am glad to tell you I am not a super hero, just a wife trying to keep those wedding vows to take care of each other in sickness and in health.  I am doing much better and realize I do need to leave the house and get out occasionally, and it helps Ken feel better about everything too.  Now that I have confessed...........

We had our anniversary celebration and it was great.  We received a golden bouquet of 50 gold dollar coins tied onto an ivy plant with bows from my brothers and sisters and a beautiful flower arrangement from Kens sister in law and her family in Florida.  It was full of flowers, birds, and a bird house as we love birds and have lots of bird feeders out our windows.

Last night Kens lungs filled up again, and his nurse had to suction him out and will be back for the second time today to do it again.  He hates it as it is not fun but would do anything she asked him to.

Hope this finds you today having a great spring day.

till next time..

Betty


The Hospice Journey - April 27

Treading down this rocky road on our Journey, what is that, that I see ahead, it looks like a no U- turn sign which I guess means there is no way to turn around and go back and live normally again.

And as I gaze ahead I see a great big "Road Closed" sign ahead but we are not there yet as we have a lot of hills to climb before we reach our destination..............

This week has shown a lot of change.  Ken has started refusing food and only drinking sips of water so with that we had to cut the insulin out and also various other meds which at this point seem unimportant.  We are dealing now with meds that only pertain to his COPD or anything that is for comfort care.  He is very comfortable, sleeps almost 95% of the time and he has no pain which is great.

He is showing some confusion from lack of 02 and probably meds.  At times he is almost funny as he still has his sense of humor.  The nurse came and suctioned him out several times and this is not anything fun.  Our kids bolted out the door as it is very uncomfortable for the patient but it is a choice that they can make whether to try it or not.  In our case, it relieved very little and she promised him she would never do it again.

He, during one of his good moments had our girls go out and buy Ma an anniversary necklace which was a necklace with a guardian angel on the end of it from a local jewelry store and was really proud to give it to me with a card.  He has never missed a holiday in all these years.  The nurse said they should clone him....lol

This Sunday we are celebrating with just our children all seven and their spouses with a family meal,  --  probably lap trays around his bed but the important thing is togetherness and love, that's what counts, and it may be the last time we are all together again.......

We, myself and the family continue to hang in there although I would like some Tylenol p.m. and about 14 hours to use it just to catch up, but that can come later, for now we must do what we must do...........


The Hospice Journey - April 29

This is going to be very short as I only have a couple of minutes. Ken fell a couple of nights ago and seemed to have injured or broken a tail bone, injured an arm, and cut his other arm sliding out of bed. He is also going down fast, the nurse came and said it would be 8 hrs to 48hrs possibly so keep us in your prayers.

Our children are all here from out of town around the clock, holding and loving dad.

I will probably not post till his passing unless a lot of time goes by but after I will tell you the remainder of our journey and what has expired.

Keep us all in your prayers.


The Hospice Journey - April 30

It is with a sad heart that I tell you my Ken passed away at four a.m. this morning.

In a few days I will finish my journal.

Thanks all for your prayers.

Betty


 

The Final to Hospice Journey - May 5, 2004

This is not even going to be half of what I would like to say but I must finish this in order to go on with the rest of my life.

Our Journey the last few days were quite an experience starting with Ken beginning to run a temp of 103 and having breathing difficulties.  I called in the nurse and she told us he was actively dying as his heart rate was also at 120.  These are 2 signs of impending death, along with no longer eating or drinking and sleeping all the time.

I then called the family all home, all seven of them and their spouses.  He slept for about four days all the time and then awoke and stayed awake all night and all day waiting for everyone to get here.  Once he talked to them all and told them he loved them and had a good time laughing, almost giddy from lack of 02 to the lungs he then fell asleep for the next 12 hours starting at about 5 p.m. and we sat vigil thru out the night.  He struggled quite hard the last few hours but we had morphine to give him.  I personally asked and gave it to him myself as I didn't want my children to feel the responsibility if he left suddenly after a dose.  I promised him he would be comfortable and I did everything possible to help him over the death hurdle.

As I held him in my arms, exhausted myself as I did not leave him for a minute, he awoke the last few minutes and his big baby blue eyes stared into mine and the kids jumped up to his side.  He did not have to say a word, I could read his mind after fifty years.  I said "Ken, you MAY go.....you MAY go.......I love you.------- and with that he closed his eyes and in three breaths left this world and went home to God.

The kids all kissed and talked to him while his body was still warm and soft and we cried together.

After a while I asked for the phone and called our nurse to finish up details. He had a wonderful funeral and is laid to rest in a beautiful spot in the new section of the cemetery.

I just came from there this morning after a visit alone,  and the sun is shinning and the birds were singing, ---  and my love was resting finally.

I want to dedicate this to an Angel Hospice Nurse called Audrey.
May the Lord always shine upon you.  We loved you.

Betty



On April 30th, Ken left us for his final journey.  He, like many before him, has quietly left a mark on our COPD community that can never be matched.  As he and Betty took us into their lives at the most trying time of all, they shared their most private thoughts and feelings.  From fears, to small victories, to glimpses of the people who came to help --- we all gained a greater understanding of what lies ahead.

Very early in Betty's writings, she asked Ken, "do I be careful what I write or do I continue to pour my heart out", and he said, "pour your heart out."

This brave and caring family did pour their heart out - as they took us through the last days, and the workings of the Hospice program. 

Ken and Betty, as truly caring people, taught us well.  Once again we have been shown the ultimate in caring and sharing.  The guidance your journal will continue to provide for COPDers who follow in the future is immeasurable.  

Our thoughts and prayers are with you.

Rest well Ken

cg
4/30/04

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