Topic: Lost my husband Rick, what to expect in the final stage

Rick was diagnosed in Feb 07, and it was a long year.  He started chemo and that was short lived.  We had researched and found chemo to be more harm than good with this particular type of cancer (when questioned the doc finally  says   "its all we can offer")  So he chose good diet and living fully until he could not , and we sure had a good fun filled summer.  After his stent to the bile duct, he got most of his energy and weight back.  Ahh but the cancer does have its way. He started failing about Oct, and luckily it was quick.  Weakness, loss of appetite, abdominal swellig and later acites, more weight loss and weakness, then the inability to eat at all. more weakness, I could not lift him, shower etc. Thank God for good family and friends.  I found Hospice to be little or no help, I will post about that later. I did not do research on them, as everyone says they are wonderful. Not so for me. Now I am knee deep in the business end, funeral arrangements or I should say party , celebration planning. Everyone needs death certificates! Its hard to grieve and do all this too. After his death family came in waves and it seemed all I did was entertain when I wanted to veg out. I finally said Im going to the barn and left them, but when I came in another group was there. So I was exhaused and I know they were trying to be there for me and respected that.... I am getting thru it, and just cant believe I am awidow at 54.  It is very scary even tho I have been very  self sufficient.
If anyone has any questions about what happens toward the end (as I did ) please ask. For you who have not been there, everyone is different but I could have used more Heads UP (hospice was not helpful for me one bit)  It gets lonely at night, but I am filling my evenings up with lot s of things to do and that helps.  This site is so helpful, it was a Godsend to me.

Re: Lost my husband Rick, what to expect in the final stage

Dear Robyn,  My deepest sympathy and condolences.  Yes when your up to it I would like to know what happened at the end, especially concerning hospice not being of any help.  Whenever my time comes I want to make it as easy as possible for my wife if that is possible.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Lost my husband Rick, what to expect in the final stage

Robyn, I'm so sorry for your loss and I'm sorry Hospice was no help to you.  I'm glad you and Rick had a good summer together.  Take care.  Please post more as you feel like it.  I'm sure it would help a lot of people. 

Carol

Re: Lost my husband Rick, what to expect in the final stage

Robyn,

My thoughts and prayers are with you.  I feel an ache knowing that this is probably in my future.  Whatever you can enlighten us with, when you feel up to it, would be appreciated.  Bless you.
Karen

Wishing all God's blessings!

Re: Lost my husband Rick, what to expect in the final stage

Robyn, I'm sorry for your loss.  Rick was lucky to have you with him.  I often think about the wives and husbands of those of us with cc, and how difficult it must be for them.  I'm not married, and wish I had a spouse who could love me and take care of me when I need it.

Re: Lost my husband Rick, what to expect in the final stage

Robyn, I am so sorry for you and Rick it's so unfair and cruel why does this happen to you and all these kind good people. I can only imagine the pain you have been through I don't know whether this is the right site but I can't pray and believe in God, I'm past that, nobody good and kind would put good people through this.

I've seached for positive news for weeks and it hasn't come. I'm fnding it hard, very hard, your pain must have been so unbelievable and I don't know how you cope with that.

I don't even know how to end this post so I'll just go take care of yourself please you deserve that x

Re: Lost my husband Rick, what to expect in the final stage

Thank you so much for sharing your information.

I am so sorry for your loss.

My dad was diagnosed 11/07 - chemo has not started yet.

He is now losing his appetite and is in a lot of pain.  Can you share anything like that you may have gone through?

The doctors don't seem to want to let us know what is happening.  Other than blood work, he has only met with the oncologis twice since the beginning of December.

Thanks again,

Kelly

Re: Lost my husband Rick, what to expect in the final stage

Kelly, it is probably because they cannot offer much in his case, sorry to say, just my opinion. The apetite loss I dealt with, and it is a big part of it. Toward the end he just was not interested, the body knows when it is shutting down. He had abdominal pain, but not terribly bad.  A few oxycodones per day did it for him til toward the end.  A couple days before he died he was not lucid....he mumbled alot, but could not communicate, altho he did not seem in much pain.  He did yell out " Get me outta here" over and over until I said "I am warming up the car for us to go, take this medicine and we will get out of here" That is when I began the liquid morphine in the hospice comfort care package. That was the toughest part of this all for me, I thot once I started that, it was the end.  It was a terrible last 3 or 4 days, thank goodness I had family and friends. I had a friend stay with me the last night, she had lost her husband to pancreatic cancer just a year before. She was wonderful, with me to the end. She stayed til they picked him up in the morning. Then that vacant feeling comes, when you just cant believe it.  AFter 2 weeks I am still there,....thinking he will come home. But one foot goes in front of the other til you have a different past.

Re: Lost my husband Rick, what to expect in the final stage

Robyn,

Thank you so much for sharing this information.  What was happening when he started to slip?  My dad just started the pain meds after the drain and he just stays in bed all day and has not been eating much the past week.  He is still able to talk and crab about us trying to get him to eat.

We are really confused as to how to manage his care and who should be at this point.

He does not have any other pain but the shoulder....he just looks and acts bad.  Where do you live?

Thanks again,

Kelly

Re: Lost my husband Rick, what to expect in the final stage

Kelly,

For most people hosipce is truly a blessing. If your dad is not in active treatment, assure that his Oncologist has prescribed pallative care and call in hospice. They will help keep him comfortable and manage pain. If you don't have a good feeling about your hospice choice make a change, you can release them and bring in another. I don't know where you live but I am in Arizona and there are a couple large, well known hospice organization and several smaller ones to choose from.

My dad was in in-patient hospice for less than 36 hours and with the exception of one person (and he was not bad) all were giving in a manner I can not describe. In the final days my dad did not tolerate liquid morphine (made him sick).  Within two hours when med could be administered again, hospice had arranged for liquid oxy instead.  Also, as I sat through the night with my dad - my hospice nurse "knew" where my dad was and helped me understand his journey.

While we never think we will follow this path, we all find the way.

Bz

Re: Lost my husband Rick, what to expect in the final stage

Robyn-my heart goes out to you.  I hope you will  stay connected to us and let our support help you in any way we can.  Grieving is a  very individual matter and you need to do what works for you.  Take care of yourself and let your friends and family be there for you in whatever way they can.
Patrice

Re: Lost my husband Rick, what to expect in the final stage

Kelly, I live in a small rural area outside of Tacoma, Wa  (graham) on some areage with my horses and dogs, cats , whatever seems to come up the driveway doesnt want to leave.  I am hoping all this work involved in keeping this place going will be good for me. It is a bit overwhelming right now! But it will be good for me in a way. I do love it here and dont want to sell.
Yes, you can change your hospice people if  you so desire, I was in the middle of that when Rick died.   Ask specific questions like....if they say they offer massage, how often?  Rick loved that but they came once (it took them about 2 weeks to get him on the schedule) and then I did not bother to reschedule because they were limited on time and I knew he would not make it . Cancer has its own schedule. Also what about bathing....there came a time when I just could not get him into the shower and it took me 3 days to get a bath person here and then she did not want to do privates (??) It just seemed to be one screw up after another. At the end of life, the toxins have a particular odor, and I wanted him to be clean. There are bath packs you can buy that you warm in the micro and they are no rinse, very convenient. My nurse knew nothing about them !  I had to find out about most of the items from my nurse friend.  I wanted to learn about cleaning him, but the bed bath person missed his hands, feet, armpits and did not want to do privates.  I did not want to learn from her, altho she was very sweet. That was only some of the experiences, now they lost my FMLA papers (family leave) and dont bother calling me back.
Another thing I would want to ask is  HOliday Availabillity...cancer does not rest on Christmas and New Years but  it seemed everything was backlogged as far as the service. Ask them , when the going gets tough, how many visits by the nurse are allowed each week.  Mine was once per week, and of course he was dead 3 days by my next appointment. I was told when I signed up they would take care of everything. Find out they do and when, get specific. HOw often can they be available if things get rough for you.  I thank God I had the family and friends I have ! They came through for me so much. What if I was older, not fit, and had no one and had to rely on except my Hospice team. I would have been devastated, more than the initial grieving.

Re: Lost my husband Rick, what to expect in the final stage

One important question to ask a hospice is whether they use agency staff or strictly permanent staff.  It makes a HUGE difference as far as the caring attitude the nurses, aides, etc will have.  Some hospices make use of agency staff quite a bit

Re: Lost my husband Rick, what to expect in the final stage

thecdr..When you refer to agency staff are you referring to  the hospice people using temporary help from one of the temporary help agencies?  When my sister in the UK was dying she had hospice come in every day.  The young woman brought her knitting and talked, got her meals, bathed her, etc.  This went on for about 4-5 months.  Her husband, my brother-in-law had a furniture store and he went to the store every day, went home for lunch and of course took care of her after the store closed.  The final three weeks he did not go to the store, but stayed with her.  I have heard people say that here in the U.S. hospice might visit anywhere from 1-3 days each week, or every other week. Does it depend how close the patient is to the end?  Sometimes when reading the obituaries ( I know, morbid) the writer will express appreciation to the hospice people and sometimes gives the name of the hospice. 
Irene

Re: Lost my husband Rick, what to expect in the final stage

Robyn,
I am so sorry for your loss. I have so much admiration for all the carers on the board and how their love shines through in their posts. I am sure all those animals will help you stay strong, they understand far more than we give them credit.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Lost my husband Rick, what to expect in the final stage

From everything I have read and heard on hospice, some are still stricly volunteer.  I email with a lady in Seattle whos husband died 2 mo before mine.  She said her hospice was great, and all volunteer. Mine was thru Multi care.  We had the best insurance, thanks to his wonderful boss who kept him on it thru the cancer. So I expected we would get wonderful Hospice also. I was very dissapointed, and I will do a post now explaining a bit more of my Hospice experience.  I have trouble sitting in one spot long, nervous energy i suppose. I am 3 weeks out now and still its so fresh, I wake up in the morn with that tape of the last days running thru my head. So I get up and get busy !!!

Re: Lost my husband Rick, what to expect in the final stage

annshal wrote:

thecdr..When you refer to agency staff are you referring to  the hospice people using temporary help from one of the temporary help agencies?  When my sister in the UK was dying she had hospice come in every day.  The young woman brought her knitting and talked, got her meals, bathed her, etc.  This went on for about 4-5 months.  Her husband, my brother-in-law had a furniture store and he went to the store every day, went home for lunch and of course took care of her after the store closed.  The final three weeks he did not go to the store, but stayed with her.  I have heard people say that here in the U.S. hospice might visit anywhere from 1-3 days each week, or every other week. Does it depend how close the patient is to the end?  Sometimes when reading the obituaries ( I know, morbid) the writer will express appreciation to the hospice people and sometimes gives the name of the hospice. 
Irene

Ann, yes that is what I mean but it doesn't matter what stage the patient is in, what it depends on is how short staffed they are for that particular day or week.  this is not a general statement that all agency nurses are bad and uncaring, quite the contrary, I myself was an agency nurse.  But the difference is that permanent staff members are in the job because they like hospice work and have the experience, this is not necessarily the case with agency nurses, much depends on the agency the contract is with.  Do your homework and ask the tough question, how much do you use temp help and then see if they will guarantee it

Re: Lost my husband Rick, what to expect in the final stage

My mom was diagnosed with Klatskin's tumour last February. She is now in comatose state after undergoing a week of extreme painful events since the cancer spread to her bones. Her body is not totally immobile and she is breathing with the help of an oxygent ventilator.  Her "food"  is Kabiven ($120 a day). Its Day 4 since she went into coma.

Everyone believes that it is anytime now. However, I want to further understand add'l symptoms that her body could be undergoing. My biggest concern is we dont know if she is in pain.  We brought her home yseterday as i was one of her last wishes.

Any information on the last "days" of a dying patient is appreciated.

Re: Lost my husband Rick, what to expect in the final stage

Is she receiving hospice services? If so, they should be telling you what to expect. Is she receiving any pain medication?

Also, see these resources:

http://www.cancer.gov/cancertopics/fact … -life-care

http://www.mayoclinic.com/health/cancer/CA00048

http://www.hospicefoundation.org/endOfLifeInfo/

Patty

Re: Lost my husband Rick, what to expect in the final stage

Patty, thank you for your quick response. She is under home care. We are in the Philippines and unfortunately, the healthcare system here is not as advanced as in first world countries.

Its been 4 days since my mother entered comatose state but her BP remains steady hovering from 80/60 to 70/50.  Our major concern now is we do not know whether she is in pain or not.

21 (edited by Bazel Wed, 10 Sep 2008 19:25:19)

Re: Lost my husband Rick, what to expect in the final stage

Ejoy...

You will know if your mother is in pain. I was with my dad for the last 24 hours of his journey and I knew when the pain ticked up. We were in a hospice facility and I was able to assure he received medication to keep him comfortable.

My dad knew I was there and sometime the sound of my voice was all he needed. Hopefully you will have access to liquid medications that you can provide to your mom when needed.

God Bless and Stay Strong,

Bz