Re: Remaining hopeful during difficult times

Dear Danielle and Jim,

I am sending you both hugs and sending God my prayers for you. 

When my dad (also a Jim) was hospitalized...the first time, it was wildly botched.  And dad was discharged to a 'nursing home' for rehab.  Not a good decision...IN OUR SITUATION...as dad was misdiagnosed.  Dad landed back in ER, and hospitalized.  They were going to discharge dad again, until I spoke loudly against this decision and my husband (another Jim) backed me up.  We got our requests heard and the doc came back, tail between his legs, apologizing profusely and calmly told us dad was full of cancer, though they didn't realize it was CC initially.  They decided they would release him and bring him back for some biopsies...and the doctor already signed the discharge papers...which, as anyone knows, creates an insurance nightmare to get reversed.  I was visited by the hospital social worker and someone from the hospital utilization review board who heard I was concerned about dad not being strong enough to be discharged prior to the biopsy. 

I was strongly encouraged by these two gentleladies to file a grievance which would then be reviewed by a committee in the Mpls area thus allowing dad the opportunity and time to get his platelets up in order to have his biopsy.  I received word from the review committee that based on the info they received, dad was in no shape to be discharged from the hospital.

Now, this was our situation...and every situation is different.  However, I can't help but wonder if the hospital Jim is at has a similar policy.  Also, a good social worker would/should be able to assist you with temporary assistive devices that you may need if he is discharged to your home. 

My dad was discharged from the hospital and went to a different nursing home for rehab/physical therapy for awhile.  This situation was wonderful.  Dad was happy, and I was able to get things readied for him to come to my home upon his release from the nursing home.

Danielle, I know that you have so much on your mind, and a strong need to be by your husband's side.  Do you have anyone-sister, brother, cousin, friend-that could help you with some of your needs, to speak on your behalf to get things arranged while you care for Jim?  Like everyone else, I am concerned about the bed sores.  Dad had horrible sores all over his body from the first nursing home.  And I am so sorry you have to see your husband suffer so much. 

Please take care of yourself.  And I am so glad that you found this site.  It was a godsend for me while I cared for my dad. You have, no doubt, already found great advisors and cheerleaders. 

I wish you both peace,
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Remaining hopeful during difficult times

My dear friends,
Thank you for the support and advice. I took the advice, prepared a speech, kidnapped the nurse coordinator and top oncologist and expressed all my concerns. They responded....Jim is terminal, needs palliative and agreed that I can't care for him (yet) at home. We are planning to moving him to a hospice facility. All the family from Australia is here now so it will work out.

The pain is excruciating but so much love in our family interactions.

I also made a very strong complaint about the bed sores - a wound nurse saw him and then developed a care plan, finally, there is better management.

So difficult.

Thanks to all of you, I knew that you would write and it warms my heart and spirit.

With love and thanks,
Danielle

Re: Remaining hopeful during difficult times

You done good, Danielle. The  hardest step to take but it had to be done. Spend this time now loving, chuckling and making a few more family memories. You are very lucky to have loving  family around you. Your whole family is in our prayers.

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: Remaining hopeful during difficult times

Dear Danielle,

I am so sorry for the pain you are going through and that these are not the answers you would have liked to hear, but glad you were able to be strong & take a stand asking the questions that needed to be addressed.  As difficult as this all is, atleast you now know what you are dealing with and can make the most of the time you have.  I too am glad you have family there to support you.  You, Jim & your family will be in my thoughts & prayers.  I hope you will keep us posted as to how you are all doing or even if you just need to vent.  We are all here for you to help, support or just listen when you need us.

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: Remaining hopeful during difficult times

Dear Danielle,
I am so sorry that the answers were not the ones we had prayed for but I am glad that you at least have answers. It is a blessing that yours and Jim's family is all there. You don't have to do everything all alone. I will continue to pray for you and Jim and if there is anything I can ever do to help don't hesitate to ask. God Bless,
Jamie

Re: Remaining hopeful during difficult times

Danielle,

I haven't posted in awhile but I lost my sweet mom to this awful disease three months ago and continue to check in and pray for you all.  I can so relate to your struggles and pain.  I know the feeling you mean when you see the bedsores - it looks so painful and there is so much suffering and I am sure your husband is a wonderful, decent man.  I said to my dad, "this is like watching a baby deer get beaten with a bat."  These wonderful people and such intense deep suffering, it just doesn't make sense.  The pit of your stomach hurts and watching is so overwhelming, there really are no words.   All they could do for my mom was dress the sores.  It was so hard and so terrible, I feel ill even recounting it. 
What we do know, though, is that their suffering isn't in vain and that's what enabled me to get through the day and be able to be thankful for the gifts my mom was giving us everyday that she endured it.  The tremendous trials they are winning will be rewarded.  This is temporary.  He will come through and will understand why it happened and someday so will you.  The one thing I learned was that there are many blessings that come from this suffering - many lessons learned and sweet moments.  The one thing I really gained from it all was that no matter what, no matter how bad the suffering or sickness, there is peace and the Lord will never leave your side.  As bad as it gets, as sick as he feels, he will get better and live in a way that we can't even begin to comprehend. 
I will pray for you and dear Jim. 
Hugs and prayers.

Re: Remaining hopeful during difficult times

Dear friends,
Thank you very much. I don't have any strength left. Today was a very difficult day. We moved him to palliative care, his four beautiful girls are leaning on me for emotional support, his family is here from Australia (we're also not from here) also looking to me for guidance, I am trying to care for my husband (who loves me dearly and needs me at his side), care for his family who are all falling aprt, accept that my husband is dying. I have not worked in 6 months since caring for my husband, will be responsibile for 5 mortgages and the Mayo just sent me a bill for 350,000. I am so scared, stressed, depressed and worn down. I've done  my best to care for myself (i.e. eat, sleep, nice walk every morning) but I falling under and want to crawl into hole and never come out.

is this normal?

Re: Remaining hopeful during difficult times

Oh Danielle.....what is normal?  Nothing can prepare us for this type of tragedy.  We just keep going.  And, so will you.  One day you will look back at this time wondering how you were able to do the impossible.  You are the rock everyone leans on.  I am amazed by the strenghts you are demonstrating.  Continue to lean on us and be prepared for a ton of support coming your way.
Cyberhug and much 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: Remaining hopeful during difficult times

Dear Danielle,

What you are feeling is to be expected with what you are all going through right now.  It is "normal" for you under these trying circumstances. I too am amazed at the strength you are showing, even tho' I am sure that inside you don't feel that strong, you are doing your best & holding everyone & everything together. That is a lot to put on anyone shoulders. There is no easy way to get through all of this, but as Marion said, we are all here for you when you need someone to lean on for support & encouragement.
I am glad that you are taking care of your needs too, that is so important right now.  You will keep on going, you will get through this.  Just take it one day at a time and know that you can come here when ever you need to even if it is just to vent your feelings.  Many of us have been where you are now and will be here to listen and help you in any way we can.

More prayers going out to 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.

35 (edited by Cherbourg Sat, 13 Jun 2009 12:43:08)

Re: Remaining hopeful during difficult times

I learned long ago that NORMAL IS ONLY A SETTING ON THE DRYER!!

You are going through so much.  I know how hard it was with my Mom' s illness.  I found myself using what I call the 5 minute rule.  The rule states:  Do five minutes then tackle the next five minutes. 

You will find a strength deep inside of yourself that you never knew existed.  Know that we are here for you and your family and we are all on a journey together.

Keep the faith.

Many hugs and much love to you and your family.

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.