Topic: Possibly Last Update

Dear friends,
Dad has been in a skilled nursing home for 7 days.  Since that time he has lost more weight, grown much weaker and is now jaundiced.  His urine is dark and bowels very light.  We were told to have a family meeting with my mom regarding the approaching end.  I know she will want a time frame and the doctors only say probably days to weeks.  What is your experienced opinion?

My mother hopes he can still take chemo and as I understand it, jaundice excludes any chance for chemo.  Any advice or encouragement appreciated. 

Lisa

Re: Possibly Last Update

Dear LisaAnn, I am so sorry about your Dad. If you are interested in knowing what to expect please e mail me and I will tell you what to look for. Also Hospice has a very good booklet and I believe you can even pull it up online. My husband followed it pretty closely although everyone is different. As you know we don't like to put time lines on anyone and we can't, really, but if you want to know what to look for I will help you though. lainy65@yahoo.com    Prayers going out to your family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by marions Sat, 11 Aug 2012 14:17:53)

Re: Possibly Last Update

LisaAnn...This development must be too much for your Mom’s psyche to absorb.  She will need time to adjust.  While nothing makes this situation easy, open communication will at least make it less difficult. This is a time of raw emotions for all of you.  You might want to include in your discussion a trusted physician,  a counselor, clergyman, or social worker.   Slowly your Mom will understand that she cannot change the course of the illness, but it is in her power to lessen your Dad’s burden. You, as families do not need to stop living rather, your relationship with your Dad continues on as was; you are however preparing to keep him comfortable for the time to come.  For those not able to bear the financial burden of in home care, hospice is a good choice.  It allows for families to spend valuable time with their loved one, administering medication under the supervision of hospice personnel and realizing a sense of protection and guidance of their staff.  You can be as active as desired in the healthcare of your Dad. This also is the time (if you have not done already) to have in place an Advanced Healthcare Directive or Living Will and be prepared to compromise with family members whenever necessary.
Know that you will experience intense moments of grief at times and know that it is normal.  Loss is painful and anticipatory grief is not less so.  The Serenity Prayer in the twelve step program states: learn to accept what you cannot change. Have the courage necessary to change what you can. And try to develop the wisdom to know the difference.
Reach out, dear LisaAnn, find the support you need and realize the strengths not thought possible; deep, inside of you.   
I would also like to mention our Dr. Giles.  He is her for us all including you. You may find some comfort by reading some of his previous responses or, you may want to reach out to him personally.
My heart is with you.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Possibly Last Update

Lainy,
I read the hospice book and it is very helpful.  My worry is that since I live 2.5 hours away, I might not be here when it happens.  If I had a better idea of time frames, I could have a better chance of being here.  I come on the weekends now and they call me when anything happens through the week.  The nursing home called me yesterday about coming today and meeting with all the family and I assume that means they think it is approaching.  But dad is responsive just like he has always been.  He just sounds weaker.

marions,

My opinion has become that anticipatory grief is worse than an unexpected death.  I do well most days when I am at work.  Yesterday, when the nursing home called me at work, I completely lost it and kept losing it until about 10 pm last night.  The nursing home wants my brothers and myself to talk to mom today to be sure she understands nothing more can be done.  I don't really know if I can keep myself together there. 

I don't feel very strong at all right now.  I am sitting here in my parents house writing this before we go to the nursing home.  My dad is everywhere in this house and I can't stand it.  My feeling right now is I never want to come back here, no Christmas, no Thanksgiving, I will never be able to do it again.  Maybe that sounds selfish but it is a pain too much to bear.  I hope I find some of the strength you mention.

Our family is very religious or I would say spiritual.    This has given me so many doubts I cannot count them.  I spend most of the time when I pray, asking why.   My parents went to a church for 50+ years and there has only been 1-2 people even come to see them or help in any way.  On top of the extreme grief, I have this overwhelming sense of anger at these people who don't care.  I have found more love and support here on this board, than from the church members at my parents church.  I don't know what that means, but it has made me doubt alot of things.

I probably should talk to Dr. Giles.   I am not sure he can help me.  Knowing that you all are here has been a light in a very dark dark place for me.

Re: Possibly Last Update

Hi there,
           try not to worry about those who dont step up when needed,its just life really,happily some do and we apreciate and give back of course but you cant waste emotions on that...  time frames are difficult,we know it is close but do not know exactly when but it is good to spend as much time as you can because that is the important thing at these times whether you can be there at the end or not               Janet

Re: Possibly Last Update

LisaAnn, I am not trained in this field and can only write to you things that I feel inside. I believe that a lot of people just don't know what they can do and perhaps they feel they should step back and let families be alone together. I found it easier to do things on my own and really wanted my time alone with my husband. Janet is so right that this is the time to concentrate on just Dad. Again, I am not a professional but I found it very helpful to be able to talk to Teddy even while he was in his Passage. To tell him how much I loved him and by telling him it was OK to go to his peace it helped release him and me. When I said it the first time it was hard but then it flowed after that. True, that the hearing is the last to go, even at that point. I hope that in time you will see your Parent's house differently and think of it in terms of a place of happy memories and comfort and love. Like Marion wrote, you may want to give Dr. Giles  a try as it is hard going through this let alone being miles away. We are here for you as well and sending you a ton of strength and love.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

7 (edited by marions Sun, 12 Aug 2012 14:22:43)

Re: Possibly Last Update

LisaAnn....everything you have mentioned is so true.  Anger, we know, covers up or substitutes our feelings of fear, guilt, longing, frustration and hopelessness.  It also helps us block out the circumstances, but remember it is temporary and allows a much much-needed sense of control.  Although, our feelings don't occur in chonological order, I would like to mention the five stages of grief as defined by Elisabeth Kübler-Ross:
1.Denial — "I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage.
2.Anger — "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Anger can manifest itself in different ways. People can be angry with themselves, or with others, and especially those who are close to them. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief.
3.Bargaining — "I'll do anything for a few more years."; "I will give my life savings if..."
The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time..." People facing less serious trauma can bargain or seek to negotiate a compromise. For example "Can we still be friends?.." when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it's a matter of life or death.
4.Depression — "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed. Depression could be referred to as the dress rehearsal for the 'aftermath'. It is a kind of acceptance with emotional attachment. It's natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation.
5.Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event. This stage varies according to the person's situation. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief.

LisAnn...allow yourself to be who you are - we have don't have training in the matter rather, we learn by personal experience. 
Hugs are heading your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Possibly Last Update

LisaAnn
My Mom was around your Dad's age when she passed from this horrible illness.
She started with mimimal stomach pain, high liver numbers, jaundice.  After way too many tests, lots of stents, talk of a possible operation, talk of no spread of cancer, she lasted 6 months.  After a stent was placed the jaundice cleared up and chemo was scheduled.  She went downhill fast after just one chemo treatment.  I hated when she would speak at the end and I could not understand what she was saying.  Your Dad sounds like a strong person.  I am happy to support you and your Mom with lots of love.  I don't know where the illness comes from and had many unanswered questions.  I am happy your family was involved with the church for so long.  This is part of what made you all such loving, caring people.

9 (edited by Cherbourg Mon, 13 Aug 2012 08:42:21)

Re: Possibly Last Update

LisaAnn,

Everything you are feeling is normal.  Of course you're angry....this is your Dad!  When my Mom was dying I was furious!  At one point I was mad at everyone....especially God!  I had a real crisis of faith but found God was big enough to handle my feelings and was never away from me.

I know how hard it is to be far away.  I live 3 hours away from my parents.  I am living proof that my car knew the way to Greensboro from New Bern, NC and could drive it by itself!  I put over 65,000 miles on my car during the
the year my Mom was diagnosed with CC.

Dealing with CC is a passage and a journey.  You are dealing with so many losses right now.  The impending loss of your Dad, the loss of a life that feels normal, the loss of being in charge of what you do and when you do it, the loss of being the "child" and not having to be in charge of your parents!!  OF COURSE YOU'RE ANGRY AND TIRED!!!!!  Of course you're questioning every idea you've ever had!

You are also feeling the hardest part of this journey which is the anticipatory grief.  I really thought it would prepare me for my Mom's death but it didn't.

I believe grieving in all of its forms is the hardest job we ever tackle.  Please remember there are no timetables and no correct way to grieve.  Everyone grieves differently.

Try and take care of yourself.  The caregiver must come first so you can take care of everyone else.  Give yourself permission to grieve, and to be tired and scared.

We are always here for you.  Someone is ALWAYS UP LATE AT NIGHT HERE!!!
I'm sending hugs, and prayers for strength, acceptance and understanding.

Lainy and I are big proponents of screaming in the car with the windows all rolled up.....*grin*.  I thank God I never saw anyone I knew when practicing this but it does help!  Try to get some rest and know you are doing all you can do.  You are a remarkable legacy that your Dad will leave behind.  I promise you will find that strength deep inside of you when you truly need it.

My heart is breaking for you.  Losing a parent is so hard and Daddys and daughters have such a special relationship.

Hugs and prayers....
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Possibly Last Update

Thank you all so much for the comfort and advice.  I may do the screaming car thing too.  It feels good just to be able to let it out, even if it makes me feel guilty for saying what I really feel....

Re: Possibly Last Update

LisaAnn, I had to kind of chuckle when Pam wrote that as I had almost forgotten about it. I LOVE Mama MIA all the Abba Music, so I would get in the car, put on the Disc and sing so loud that my throat hurt. Drive around and when I felt better usually just about 15 minutes I would go back home no one else the wiser. I say, what ever works. You see, Teddy couldn't  take anyone breaking down around him as he had steeled his mind so. I figured that was his only request so it should be honored. At times it was very hard but we did it. One time that stands out...Teddy's Sister is our little Sicilian Drama Queen. You know, the one you would hire to cry at events? She came to see him from out of town before his Whipple and I warned her over and over...no crying.  She walked in and saw her beloved brother yellow and very sick. I shot her a look...she kissed him and grabbed her cell phone and said, "I have to go outside and answer a call!". It really was kind of funny as the phone of couse had not rung. We are here for you, vent all you need to and be strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Possibly Last Update

Dear Friends,
Dad has been in hospice for about two weeks now at home.  There is no chance he will get to try chemotherapy.  He has steadily deteriorated since he had the external drain put in. Hospice called me home last night, I usually try to get here on Friday nights, and they state it can't be more than 2 days. 

Dad has only eaten a bare minimum of ice chips for days, something like 6-7 days in a row.  The completely strange thing is that he is not in pain.  Sometimes they give him pain meds anyway even though he does not complain nor ask for it.   Is that a strange occurence?  TO have no pain with this?  I am grateful for it.

Dad's breathing seems very shallow right now, like right at the top of his chest and he can barely speak.  We have to put our heads down to his face to hear.  Last night he spoke to all his kids and reached his hands up to hug us.  He said "I want to go out in the field and find my rest."  There is a huge farm behind us.  As much as I do not want to lose him, I pray he finds that rest soon.

Re: Possibly Last Update

Dearest LisaAnn, I am so sorry about your Dad but it is such a blessing that he is peaceful and yes, it is possible to be pain free. He seems to be preparing for his final journey and he is letting  his family know he is more than ready and he is at peace with everything. This is a true blessing. Please remember that the hearing is the very last to go, so everyone should talk to to him, tell him you love him and tell him it is ok to go to his Peace. Sometimes our loved ones are looking for that 'permission'. It also, in a way, releases you by giving this permission to accept what is happening. Do not be afraid, your love and strength will get you through and with Teddy we experienced an awesome exit. My love and prayers go out to your family .

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Possibly Last Update

Lisa Ann,

If you look up my posts I did (April 3, 2009) when Mom was dying you'll see she was in no pain.  She simply slipped from our arms into God's. 

We told her it was ok to go.  I don't have the words to express what I was feeling but it was a beautiful moment I was priviledged to witness.

I'm holding you tightly in my thoughts and prayers.....

Hugs.....know we are here for you.....

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Possibly Last Update

Lisa Ann,

I just want you to know that my prayers are with you and your family at this time. I lost my father in January, and I know how you must feel. Hold his hand and tell him everything you want him to know. He will hear you. My father was completely coherent until only a few minutes before we lost him.

Praying God will give you and your family a peace and comfort during this difficult time.

Re: Possibly Last Update

Lisa Ann,

I'm sorry for what you and your family are going through.  Know that my thoughts and prayers are with all of you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Possibly Last Update

Dear Lisa Ann,

I am sorry to hear what your dad is going through right now. Reading your post brought back many memories for me as I went through this stage with my dad as well. I am very glad to hear that your dad is not in any pain right now, and like Lainy has said to you, this is possible here.

I know that this is a tough time for you all right now, but cherish these moments and know that my thoughts are with you as you go through this.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Possibly Last Update

Lisa Ann, it's heartbreaking to read what you have written but know that everyone on this site understands what you are going through. Know that our thoughts are with you, and we are giving your family support through our prayers as well as yours. Follow Anp's advise, tell your father you love him, he WILL hear you and comfort him at this most difficult time. All our prayers heading your way.....

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Possibly Last Update

Lisa Ann....my heart is with you and your family at this precious time. 
All my love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Possibly Last Update

Lisa Ann, Thinking of you as you spend the last hours with your dad. My husband, too, did not seem to experience pain at the end. What a blessing. He will be at peace soon and I hope you find some peace in this sad time as well. Hugs. Nancy

Loving my husband from afar.

Re: Possibly Last Update

Thank you all for your support.  I can feel your support even through the distance.   

Dad is nearly unresponsive now, but I did get the chance to tell him that he has been the best father any daughter could ask for.   Once while sitting there, I wasn't talking I just had my head down beside his pillow.  He opened his eyes and said, "you don't have to worry, I am not going to die, I will be around." 

My son was in Afghanistan.  I have fought MS for 12 years. Went to school and almost have a doctorate.  This is the hardest thing I have ever done.

Re: Possibly Last Update

LisaAnn...I agree.  I don't know where we find the strength but somehow we are able to deal with the unimaginable. Know that you are stronger than you thought to ever be and that you are able to handle anything whatever that may be. You can do it.  My heart is with you.
Love and hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Possibly Last Update

Dear LisaAnn, yes this is the hardest thing to do in life but your Dad told you the truth, he will always be all around you. And please, say a big thank you to your son for what he is doing for us all! I know you are as proud of your son as your Dad is of you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Possibly Last Update

Dearest Friends,
Dad's horrible ordeal was finished today at 4:15.  He passed relatively peacefully and his entire family was at his bedside together.  I don't know what I can do to make a difference with this horrible disease but I am willing to devote all my pain to finding what causes it.  Thank you all for being there, I am just so numb and exhausted I can barely think.

Re: Possibly Last Update

I am so sorry, LisaAnn. My prayers are with you at this difficult time. May you find peace.

Love and hugs, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.