Still Surprised After 17 Years

EdiBug

After 17 years of helping my DH navigate EOAD, I assumed that not much could surprise me about this journey.  Except for exceeding the expected longevity for early onset, he really did follow the progression timeline closely.  So, I was a little taken off guard when he started having seizures a week ago.  I know that this is one of the late stage symptoms but somehow it never hit my radar. He is 65 years old, mid-stage 7 and signs of decline in the last year included three UTI's, three falls, chin on chest when walking and leaning a bit to the left when sitting.  After each UTI, he lost a bit of some type of function (like how to lift the spoon to his mouth.)  He still had good appetite, was able to walk with assistance and was still responding to simple commands.  But, apparently the last UTI was a strain of bacteria that was antibiotic resistant. He had a seizure and was taken to the hospital.  The doctors aren't sure if this infection contributed to the seizure or if his brain was just beginning to shut down.  Between the seizure and the UTI, to say he became combative, hallucinating and afraid is an understatement.  I have never witnessed someone in such agony and he literally was out of his mind.  Once antibiotics were on board, he started to recover, eating his meals and we had a day where his functioning returned to where he was about two years ago!  His personality came through, he knew who his family was and even blew me a kiss when I was helping him.  And then, those seizures returned and he forgot how to swallow.  It's like his tongue was a foreign body in his mouth and he literally didn't know how to use it.  He is now back at his home on hospice care and it's just a matter of time.  We are on day six with no food or water and are just trying to manage his comfort level.  Even this close to the end, the disease is trying to attack his brain.  He is still combating those hallucinations and having small seizures so it's still a bit of trial and error trying to find the right dose of medications/pain killers to help him through this last bit.  To say it's been quite a week is an understatement.  I kind of feel like the Little Engine saying over and over, "I think I can, I think I can" just a little bit longer.

JoseyWales

Wow, that's quite a journey you've been on. 17 years. He was so young when he was diagnosed.

Sending prayers for you as you navigate this next part of the journey.

Lorita

So sorry to hear your husband, and you, are having such a hard time.  I know it's so hard to see this happening to the person you love and have been with a long time.   I guess we never fully know what to expect in this journey we take.  Hopefully,  they'll find the right medications to keep your husband comfortable and his passing will be easier.

 Take care of yourself, rest when you can.  We're here when you need to talk to someone.

David J

Edi,

I am sorry it has been such a long road for you and your husband  I understand, since we are on year 14 of EOAD.  I know that such a long stretch of being primary caregiver changes you and robs you of what should be good years. I am sorry that your husband has suffered so long also. I wish you both peace during these final days and after.

Dave

Ed1937

WOW! Those of you who have been on this road for such a long time are truly saints. You will be rewarded in due time. I'm sorry you have had to endure this. Hopefully the end will be comfortable.

Jude4037

My heart goes out to you. Your husband is still too young to die but the agony he has gone through is not some thing that one would want to go so long. It is a disease that impacts the whole family. Hang in there and know you have done  a good job.

Jo C.

Dear Edibug, I am so very sorry.  You have gone the distance and thensome; I send a soft hug and warmest of thoughts your way; please let us know how you are doing, we truly do care.

J.

White Crane

Dear EdiBug,  How sad you and your DH have to go through this.  My heart goes out to you.

abc123

Dear Edi, You are an incredible human being. I hope and wish for his last days to be peaceful for the both of you. You are in my heart and my prayers.

EdiBug

Thank you all for the kind words.  Only those who have been down the AD journey can relate.

Dave, my heart sighed when I read that you are 14 years on the EOAD road.  Yes, this disease does rob us of good years but even so, I am comforted to know that I upheld my promise to my husband that "I've got you" through this, and I have become a more compassionate person because of it.  

French

Dear Edi, I admire you.

Jeff86

What an extraordinary caregiver you have been.  I hope the days ahead go as well as possible.  You have my deep admiration as well as best wishes.