My father was admitted to hospice 3 weeks ago

[Mei Mei]

Dear Forum Friends,
We all been through so much and really understand what it's like to be really really...unwell.   Now my father is in the hospice program and still in my home.   He changes drastically week by week. 

I called my daughters last night and told him I started the morphine again.   They didn't know what morphine was and changed to subject to Trick or Treaters and how many came to my door.   When I tell them outright that he is dying, they change the subject and I bring it back.    They say, don't say that...that's not true.   They came a few weeks ago for one day and he wouldn't wake up.   They asked what's wrong and I said bluntly...he's dying.   Again they said that's not true.

What do you do with a family in denial and I'm here holding down the fort?   I have to go to the funeral home and make the arrangements and wonder who will come to the funeral since he is 97 and all his friends are gone with some in Calif, Mass, NJ, NH and China?    I told them to come often because he's dying and they don't believe it.   I'll have to make the trip to NJ from Maryland with him in the hearse and I'm not sure if they'll come.   They just won't take time off from work for anything.    I used the handicapped van and brought him to church last week and he was very happy.    I'm trying my best.    Saw Steve Jobs' sister's eulogy and she said the entire family was around when he died.   He was very fortunate and led a good life short as it was.

If you have any suggestions about how to handle the family, let me know because I don't know what to do with people that won't understand.
Mei Mei

[Jim Scott]

Mei Mei ~

I'm so sorry you have to deal with this sad situation.  I'm also sorry to say that it isn't all that uncommon.  Family dynamics can be stressful, especially when the parent is very old and the children are well into middle age and consumed with their own lives.  You are, obviously, the caregiver, the dutiful daughter - and your siblings are just fine with that situation, for obvious reasons.  However, they usually retain some measure of guilt over their abandonment of responsibility toward their aged father.  This is where their aversion to being told that father is dying (at age 97) comes in.  As you know, it's called denial.  My only advice is to be as honest as you can with your family regarding your father and his imminent demise.  I would remind them that they may not get another chance to see him or say goodbye if they don't do so, now.  If they still chose to pretend nothing is wrong, then so be it.  You've done all you can. 

As for funeral arrangements, those should be up to you.  I would definitely keep it small and simple, due to the circumstances (few friends or family to attend).  You've been a good, responsible daughter to your father.  You're doing what is right.  We can't control what other people do or feel so I would focus on Mei Mei doing what needs to be done and let the family do as they wish.  Recriminations and hard feelings are pointless.  Your father is near the end of a long life.  Do what you can for him in his final days.  What your extended family chooses to do is theirs to decide - and live with in the years to come.  You're doing the best you can and that is all you need to remember. 

I trust that you'll find some solace in knowing that folks you've never met are thinking about you and praying for your strength in these difficult days.  Please let us know how things are going for you, Mei Mei.  Thanks.

Jim

[Cheryl R]

Mei Mei,     You won't make others deal with the decline of your dear father's health and how soon you may see his passing.       You have tried and I know from our emails that you have went above and beyond what many people would have done for him.       They are the ones who in the end will have to live with how they responded to you in your efforts to let them know.    I have seen when I was working all kinds of family situitations with how they respond to having a parent or grandparent decline and die.         Just know in your heart you did the best you can.
                                        Hugs, Cheryl R

[Tod]

Mei Mei, I am so sorry to read of your difficulties with your daughters. I know it took a long time for my youngest sister to come to grips with the fact that our Mother's impending death.

I don't know that there is much that you can do apart from being clear and firm that time is short. It may very well be that this is one of the most important lessons for your daughters to learn...and they may well have to learn it the very hardest way.

Blessings,

Tod

PS - I saw this just before the memorial service for my former step-father at Arlington National Cemetery. I thought about you and was sincerely hoping that things turn out well for you.

[Mei Mei]

Dear Tod,
I was so touched by your thinking of me during the funeral at Arlington today.     Being an only child all these years, I've been envious of people with siblings, but know that even people with siblings, the weight often falls on one of the kids.    That's me here and I'm in no shape to do all of this but still am.   I just keep plugging away and wish my girls were here to witness what is going on.   I am so sorry for the loss of your step dad.    As they say:  Remember the good times.

To Cheryl and Jim,
Thank you also for your words of wisdom that I am so hungry for right now.   I have no one to talk to about what's going on and will make the decisions all on my own.   I'm used to that.    I will go to the funeral home before the end of the week and make the choices on my own.    When my mother died 20 years ago of pancreas cancer, our priest went with my father and daughters.    Everyone is spread out now, they are grown up and have their jobs, publishing papers and making decisions.    This is life in America today and I understand them for their progress.   I'm am very proud of them for their progress but at the same time I wish they could take some time off for this wonderful man that dotes on them so much.

His tubes made by Westinghouse in WW II were used by the RLE of MIT to trick the Germans in to shooting at each other while they thought they were shooting Americans.    We were riding around Richmond and he said RCA flew me down here and I said for what?    To test out my equipment to talk over a radio from the plane to the ground.   His speeches are here and he cooperated with someone that won the Nobel Prize in Physics for developing the  Laser and before that the Maser.    If you get old enogh there is no one around to say good bye no matter what you've contributed to society, not that it matters.   I haven't contributed as much as he did but would want the same treatment I am asking for him and all my family   He's begging to see them and all he has now is me and my dog around him.

Thank you all for listening.   I'll try to be more upbeat next time.
Mei Mei

[opp2]

You know Mei Mei, you don't have to be upbeat. This is one of the most difficult times of your life. Your Dad is the foundation of your life, he brought you into this world, raised you with your Mom, and did his best. He did important things, but the most important was being your Dad. You have a right to be sad, frustrated, resigned, melancholy. All those things.

I wish you Strength, though you are stronger than you know, Peace, though it will come by knowing you've done the right thing, and Love. The love of all these strangers who care for you, and by doing that, aren't really strangers at all.

Nikki

[Mei Mei]

Thank you, Nikki.   That was so very touching.   Big hugs around all of you.   You put into words all my thoughts and feelings that I don't feel like putting it down on paper, but these thoughts are running through my head.    Yes, it's a bad time to go through.    The hospice nurse told me 20 years ago that you are doing the most difficult thing you will ever do in your life by burying your mother, but I feel the same way about my father.   

He was just singing opera and then stopped and wiped the tears from his eyes.   I asked him what was wrong and he said he was sad.   He was a melancholy as me.

Thank you again for your thoughts.  They mean a lot to me.
Mei Mei

[kraynok2]

Oh Mei Mei, I am so sorry to hear your news.  I have not been able to get to the forum for some time now because of family illness and a tremendous amount of school work.  I am taking a few minutes to try to catch up a little.  I know how hard it was for us and my husband's family last June when we had to make decisions about pulling the plugs on my mother-in-law.  The posts you have received say it so well, I don't think I could add much more.  Please know that I will be thinking of you and add you and your father to my prayer chain.  Take care of yourself.
Sandy

[ppearl214]

MeiMei

I will only say that my  hugglez to you during this time is what I give to you.... as I am in your same shoes. I will say nothing more re: my dad as it upsets me as much as your situation upsets you, but know that I, too, understand, since, once again, I walk a same journey as you, even though not AN.

Lots of hugglez.
Phyl

[Mei Mei]

Thank you Sandy and everyone!   I knew this day was coming, but it is so difficult to watch someone, anyone go so far downhill.   He was crying last night and then this morning.   Then I started crying and his nurse started crying. We all went to Barnes and Noble and then sat outside to have a salad with our dog Punky.   He orders food and then doesn't eat it.   He can't swallow anything anymore.


The Botox injections are helping my low neck and shoulder pain, but they didn't inject in the upper neck and sub occipital area so I am in a lot of pain there.   If I knew there was such a long recovery, I would have taken the CyberKnife instead.


I went to a geneticist that is great.  Her name is Claire Francomano and she's up in Baltimore.    If you want to go to her let me know and I'll forward you the information.

I will pray for your family and remember it's almost December...then comes winter break!
Mei Mei

[Mei Mei]

Thank you, Phyll.   I'll pray for you and your dad as well.    Read my notes here from all my wonderful forumites.   They apply to you as well and are so comforting.
Huggles,
Mei Mei

[saralynn143]

Mei Mei - I believe that one of the functions of hospice is to provide support services to family members. Perhaps they could contact family members on your behalf to let them know that they do indeed need to come see your father now.

I know when my dad was in his final stages, each of us was processing it in a different way. It's difficult, for everyone.

My prayers are with you.

[tenai98]

Mei Mei
My prayers are with you and I'm sending many hugs your way....Not many would do what you have done for your father...Most would put their parents in a nursing home....you deserve a huge pat on the back...My thoughts are with you.
Jo

[Mei Mei]

Thank you Sara and Jo,
I know.    I just don't want him in the nursing home.   For the 8 months I was having the room built attached to my house, he was in the most famous nursing home where the hopital chose for him.  Even that one they didn't care for him like at hom.    He is not interested in the Bingo and games that they play there.   He just wants to be here with us.   It's easier for me because I don't have to visit.   The problem is the aides.    They scratch the dining room chiars I just had finished with the wheel chair and many things are missing from all over the house.    It breaks my heart to see things missing.   Now I have new aides but the other one just had a hearing yesterday to try to get unemployment and they denied her   because they said she said she quit and I said before she quit, I fired her.    She was always crying  everyday and wanting to borrow money or have an advance on her next paycheck.   Now the house is happy again but my sentimental things are mostly gone.
Mei Mei