Looking for Real Life

banpaeng

I have always thought that before it would be determined that wife was in end stage that she would be someone bed bound.  Well she still gets around the house fine but has multipul problems.  Well today went to the Neuro and he informed me she is is end stage.  That was like a shot to the teeth.  I am so down but do not want my wife to get down so I soldier on.

I know this sounds cold and heartless, but if you have received this end stage diagnosis, what did you feel.  I really don't want you to say praying for me etc.  I feel like $hit and yet I know I have to keep plugging.  What did you do to keep positive.  Keeping positive now is very hard.

terei

You both have my sympathy.  If you have not already, I urge you to have her assessed by hospice.  They will help you during this time + with planning going forward

ElaineD

Dear Banpaeng,

You are in 'the valley of the shadow of death' now.  The pain and uncertainty are overwhelming.  Hospice people are trained to not only help your wife, but also to support you.

You do not have to do this alone.  It's lots of work staying positive alone.

I don't really think 'positive' is possible for most people in this situation.

You could ask your PCP for an RX for an antidepressant if you don't take one already.  

You may not have time, but a social worker/counselor has been a major life support for me.  You may already have a therapist.  If not, it might be a good idea to establish a relationship now. 

Try to eat properly, and get enough sleep, if possible.

One thing that has helped me through very hard times is the effort to think about 'next year' when this part of your journey will be in the past.  This, too, shall pass.

Love, Elaine

60 falcon

A couple months ago  my wife and I both had an annual appointment with our primary care provider. Just one of those appointments where nothing significant is done other than to allow the doc to continue prescribing our usual medications.  While we were discussing my wife, the doc said DW is end stage.  I'd say DW is in the middle of stage six.  My guess is the doc was referencing/using the three stage scale.  

I didn't question the doc further but wish I had.  She also said something that sort of implied that DW might have about 5 yrs yet. 

I didn't like hearing "end stage", but at the same time I wish for almost any end to this suffering (for her and me both) before another five years of this.

Jo C.

Dear banpaeng,  I can well imagine what a startling piece of news that must have been.  I am truly sorry.  For many of us, it takes time to digest that; for our minds to fully process and work through such unexpected information.

Though I do not know your wife's Neurologist or how he/she defines, "end stage," I found from personal experiences that such a statements by the specialists were not always accurate for how I thought of, "end stage" being.  That Neuro "end stage," had a very long length and my LOs being more active than one would think of "end stage" actually being.   I think Neuro in our specific instances,  meant my LO was actually heading into or had headed into the last of disease dynamics; but not that my LO was actually facing death very soon or in the process of actively dying within a couple of months.  

When the very end stage actually came, your question was; how did I feel?  That was complex and varied at times.    Though intellectually knowing that time would come, it was still a significant breathtaker of the heart.   Initially I  felt at loose ends; "what does this really mean," "how is this going to happen," "how will I and can I manage this?"  "what happens after all is gone, and how will it be to not have my LO nevermore?"  On and on my mind went.  Sometmes it went on in the wee hours of the morning.  Some of it was practical such as finances and practical things, but always; there was the grief of knowing we had reached the journey's end. 

As time moved forward, I felt a deep sense of impending loss; I felt the memories of life with my LO coming to the surface quite often; so many of them.   I had regrets for things not done or even that were done poorly over the years and so wished I could have redone some of those times and wished I were a "better" person, (I seemed to forget all the goodness and rising to the occasions there had been).  I reached a point of deep poignancy and sadness.  I was sure to say "I love you," very often.  I was sure  to touch, hold a hand, to stroke and to kiss when leaving the room; but also very important to me despite the carer difficulties was to treat my LO as though my LO was still living - NOT just that my LO was dying.  I think that is important.

In the days and months of all of this, I also had to think about finances, home upkeep, caregiving, etc.  I was glad to have Hospice step in and be part of the care team.  That was very helpful; and when my LO developed an intense 24 hour active caregiving set of significant needs, that required another level of care and placement ensued - Hospice followed right into the care facility as of course did I. 

My LO reached a point at the end where there could no longer be interacttion or conscious awareness, and I did not know if my LO heard me or not; but at times I sat near the bed, hand in hand or hand softly on arm, and spoke to my LO about all our life together; the holidays, the family, etc., etc.  Soft conversation only and not overmuch at one time.  It seemed to bring a bit of peace, and it also helped me feel I was giving honor to something while it was still appropriate to have such times..  I was with my LO when death finally arrived, that is of course another story.

Some practical stuff re Hospice if you wish; or you can disregard:

If you find that your wife has indeed reached a point at which she has only months left to live, the suggestion that you contact Hospice is a very good idea.   They will do a very in-depth assessment and will make a determination whether or not your dear wife is actually terminal and in need of Hospice care.   By the way, they also support the caregiver.

They will provide a bath aide three times a week who will also do light housekeeping in the patient's room.  They provide a Social Worker who comes to the home.  You will get an RN dedicated to your wife and yourself.   You will also get all equipment that is necessary for your wife at no cost to you.  This includes such items as hospital bed, wheelchair, guerney chair if necessary, Hoyer lift if necessary, and other items. Some agencies even provide incontinence supplies; others do not.

Just an aside here:  If you are interested in Hospice, it does bode well to do a bit of calling. My preference is to contact three Hospice entities.  I far prefer the larger Hospice groups; my personal experience was that the Mom and Pop smaller ones are not on the same level for staffing and for timeliness and ability to manage to deliver services as well as the larger ones.

I call three Hospice agencies and ask the person answering to please transfer me to the Supervising RN.  If asked why, I simply say it is "private."  Not problem. By speaking to the Supervisor, one can discusss one's LO, and also ask about how they deliver their services and what their philosophy of care actually is in practice. By doing this, I was able to find which agency was the best fit for us; they all have differences and some are far more beneficent than others.

I so hope you will come to talk to us; we truly do care; you are a person of good spirit and have faithfully continued to go the distance.   I send warmest of thoughts your way.

J.

jfkoc

On a Tuesday I was told that my husband was actively dying. I went immediately into denial. The next Tuesday the nurse came and said that his lungs had cleared up. I said something like "of course". At 5p Hospice was called. He died 9 hours later.

Not certain if this helps with staying positive but maybe?

Stuck in the middle

"End stage" means different things with different diseases.  With liver disease it means the patient qualifies for a transplant, for example.  In Alzheimer's, it simply means "significant difficulty" with memory and mental function.  It does not mean death is near.

Nothing has changed.  Your doc has simply acknowledged what you already knew, that your wife cannot live independently.  In your shoes, I would enjoy each day with her as much as I could.  

banpaeng

Thanks for all the kind reply's.

I realize that the end as we know it is not neigh.  Even reading, it is said 1 to 3 years.  It was just the thought that it was said.  The words from the medical community made it hit hard.  When I wrote above, I had just returned home.  

I have said for awhile that we were in late stage 5, busting down the door to 6.  At least I was somewhere close.