I feel already that this post is going to be close to incoherent.
Okay, I'll just start with what I was told today. Not just told, but talked with hospitalist, neuro, (NOT the one who said thirty years, but a hospitalist neuro where H remains) a psychologist and a neuro psychopharmacologist.
H continues to decline. He is evaluated as functioning at primal level. Although no formal neuropsych eval is possible at this time it is estimated that his iq, tested at 135 as an adult, (he participated in a study) is now maybe 50.
Primal!
They want to transport him to a snf within a couple of days. No one disputes my orders for dnr; dni. This is not just something I thought up, but is based on my poa and a health care proxy H initiated many years ago as well as many discussions he and I had over the years. They say he is suffering as his brain can no longer communicate with many, but not all body systems. He is now on comfort care only. No more mri's no more blood draws, the conclusion is that his brain is deteriorating even since admitted there. The plan is to send him to this snf that has an inpatient hospice on site.
Just last week, to the day, I was venting here about my impatience. Now he has a px of two weeks to six months.
After a few days, he is asking for me, by the term "wife", not by name. His cognitive status varies from docile to combative. They don't want me to visit him unless accompanied by a psychologist so as not to increase his agitation.
This is going to be a rough night. It's a big shock to get news like this. Watch what you're doing around electrical appliances and sharp objects. You are in shock and this is when accidents happen.
Abby I can not begin to imagine what a shock this must be to you. These are the times when I feel utterly helpless. I want to reach out to help you, but I know there is absolutely nothing I can do to bring you any real measure of comfort. I am so sorry Abby, for you and your dear H. ((hugs))
I am so so sorry Abby, if there was something I could do to help you I would do it in a flash. Please take care of yourself and let us know how you are doing. Blessings and Hugs.
Please try to take comfort in knowing there are so many of us wanting and willing to help you. Stay with us. Sometimes doctors can be wrong. I wish I could do something for you. Don't neglect yourself in all this. You will need all the strength you have.
Abby--Your post has turned on the water works here (I guess that's good--I learned yesterday that crying releases endorphins--but that's for another thread). Is there someone--a dear friend, close cousin, etc. who can come and be with you at this time? I have no idea where you live, but seem to remember that you don't have siblings. You shouldn't have to deal with this alone. I hope that once he's transferred, the hospice folks can at least make him comfortable--that's their specialty--and I know it will ease your mind. You're experiencing what we all fear with this bleeping dementia--we really don't know what will happen from one day to the next.
Oh my dear sweet Abby, My heart is breaking for you. I have no words of wisdom, just love in my heart for you and your DH. Be kind to yourself, we all have days were we are overwhelmed and can't take it. May you find peace and comfort from those around you.
Computer has been down and to read your thread this morning is heartbreaking. Abby I send you all the prayers I can on an hourly basis..........please take care of yourself. God bless u and your DH.
Wow abby, so sorry even though we know anything can happen the speed at which it does still makes us stop and gasp. My heart goes out to you take care of yourself he is in good hands.
abby, my heart goes out to you. This all seemed to happen so fast. I will keep you & your DH in my prayers. Like others have said, take time for yourself now. ((HUGS))
Dear Abby: Our hearts and thoughts are with you. I had never heard of someone's having a psychologist along on a visit to decrease agitation, but it sounds like a good idea for both of you. God, this is not easy, you need whatever help and support you can get. I send you strength and understanding. Betty
Thanks to all of you I don't feel alone. I am physically alone, but that is better than especially the last days H was here with the screaming and slamming and falling. As much as I care for everyone here, I doubt I will ever be able to share every horrible moment of those last days. I am sure these moments are not unfamiliar to many here.
But, will they be the last days H is here? It has been another day of contradictions and differing opinions. Following the shock of yesterday's information, which has now been altered, I have at least had time to think.
The hospice orders have been withdrawn. Insurance says: "you cannot have snf status and be on hospice at the same time; they are counterproductive". So, hospitalist neuro, at least as of this moment, is issuing orders for snf placement. As I understand it, the hope is to maximize H's quality of life as he transitions to ALF. Snf is only for up to 60 days, with insurance review every 7-10 days I doubt his placement there, if it is approved, will last very long.
Hospital social worker says: "but he is so young, at snf he may achieve cognitive improvement, since he has not been staged." General N as well as specialist N called his brain atrophy severe. But oh-kay, sure, he will improve. This is in direct contradiction to what hospitalist doc said.
I have never hit a person or animal in my life. But I swear, the next time I hear "but he is so young" from someone who does NOT GET IT, (I have heard it here, but with empathy), well, I just want to smack them. Social worker said "you have to have hope."
Social worker continued: "after dc from snf he can return home and a part time aide will be covered by hospice, but not in an institution because he is not actively dying". The doc said that with H's physical condition and behavioral issues he cannot return here. (H is 6.2, weighs about 190 and still has relative physical strength from lifelong sport and practicing yoga as an adult.)
Thank you so much for not only hearing me, but for listening, and for your wisdom and support; all your messages have been full of both.
Hi Abby, just getting caught up after family issues here with a bil who had heart surgery 10 days ago and a second last night..long story but bil is far from out of the woods, I am sorry to hear of your situation and that social worker needs to be educated but not on your door step..She is like the intern we had at our Alz support group a few months ago...a young lady with NO hands on experience as caregiver let alone dealing with alz yet an intern to moderate our group. I told our leader to consider having any intern do some work in one of the nursing homes before coming to our groups and suggesting we try showering with a friend when we are dealing with these issues...sound like your social worker is really wet behind the ears too,
I hope you find some resolutions for your situation and that you can get some rest...
I would not have your self control not to reply to the remarks such as '" You have to have hope.." I would ask hope for what? a cure? You must be daft!
Blessings on you and your family at this difficult time.
Hope about WHAT? That he will live longer? That he will be cured?
Yes, snf and hospice are in contradiction. You are correct that he might not be in snf for long so be prepared for what you have to do next. I would think that going directly to alf would be easier on him than going to snf and then to alf. From what you write you do need to refuse to take him back home.
As to "but he is so young" I suggest meekly stating to the sayers that dementia progresses faster in younger people. The assumption of many is that youth makes it possible to combat dementia, when the opposite seems to be the case.
Too young? In defense of the SW it must be stated that for the past 20+ years it has been 'gospel' that AD does not and cannot happen before age 65! This stupid concept was taught to me in my RN program 20 years ago and is continually recycled every time somebody talks about "EARLY onset". (if something is not 'early' then it must be 'on-time")
My own 61y/o wife enrolled in a daycare and the PsyD (who runs the dementia only DC program!) told me she thought me wife MUST have FTD because AD doesnt happen that young(!) I reminded her that Dr. Alzheimer's FIRST patient was 51! And then followed up with a comparision of the Sx between FTD & AD and the Sx my wife displayed and that ended the discussion.
Another myth that has been taught in medical programs for the last 20+ years is that "nobody ever dies from AD"
So, it seems obvious that SW is not current in her training, she is just baseing her statements on ancient information. (Still not right)
She needs some serious training on dementia which seems to lacking everywhere in the medical community. I wonder if she believes evil spirits cause disease too???
Yes. As others have said here, for H there have been multiple dx and multiple opinions. In a sense he has been a medical curiosity. He appreciated this and, since I have submitted his health care proxy to so many over the past week, I am always amazed that even what is now nine years ago, he specified that he wanted his brain donated for science and or research- not only his brain but any part of his body or its products.
He has not been able to read or write for some time now, so to see that document in his own writing is beyond words that I can come up with at this time.