End Stage - Rapid Decline - Early Onset

HusbandHasEO

Just wanted to "talk" to others and provide an update for others out there wondering how it looks as things progress.  I feel like there is not a lot of information specific to disease progression for early onset.  

At Christmas, my 56 year old DH was able to go out to dinner and feed himself. 

Today he is at home on hospice, completely bedridden, unable to walk, not feeding himself even finger foods (last week he was), sleeping most of the day, in pain (his legs we think), mostly quiet, speaks sometimes but doesn't make sense, more of a quiet mumble.

When he is awake he often stares with eyelids have closed.

He had been eating and drinking well up until a couple of days ago.  Today he has forgotten how to use the straw.  He can still swallow, but not easily.  Today is the first time he turned down food.  He had been enjoying food!  The last thing in life he has been able to enjoy.

He has been coughing quite a bit, but the hospice nurse says his lungs are clear.  His breathing is shallow.

My husband was big and strong and otherwise healthy when he was diagnosed with this in 2016.

I don't know if I am ready for what is coming next.  I know I have no choice and trust that God has got this somehow.

Thanks for listening.

Mint

((( I am so sorry))).

M1

So hard to watch. Glad you have Hospice there, hope they are helpful to you.

anneleigh

I am so sorry your husband has digressed so quickly since December.  Reading your post reminds me that conditions can change quickly and we cannot take for granted how long in each stage.

You are strong and have taken care of your DH well, and may God help you with courage to get through the end stage.  Please lean on others especially now and have them help you.  I will be praying for you!  Hugs~ 

John1965

My DW was diagnosed 6 years ago at age 50. Decline has been slow but is speeding up. I have a hunch that she’s on the cusp of a big drop, but there’s no roadmap. Since there’s no going back, sometimes I wish it would just hurry up. Then I am overwhelmed with guilt. There’s no getting around how cruel this disease is.

JoseyWales

Wow, that does seems like a very fast decline. It must be so hard for you right now. I wish I had uplifting words, but this disease just sucks in all ways and I don't know uplifting words.

My DH was also diagnosed in 2016, and he's 57 right now. Things seem to be speeding up around here, but it's so hard to tell. I wish there was a timeline, but it's always interesting to hear how others have traveled this path. 

David J

Dear HusbandhasEO,

I am very sorry you are facing this so soon. We don’t know how fast or slow our LOs are going to travel down this road. Some are faster than others, but unfortunately they're all going the same place. We understand and feel the pain you are experiencing, because it is our pain too. Wishing you strength and determination to see his through. 

Ed1937

That is super fast! I'm sorry. Wishing you strength in the coming days.

modo2

Wishing you strength in the days ahead.

Doityourselfer

Dear HusbandHasEO,  

Thank you for sharing your update.  I agree with you that there isn't a lot of information specific to the progression of early onset.  It's a nightmare of a disease and so unpredictable.    My husband was also diagnosed in 2016 (at the age of 57).  

Wishing you peace in the days ahead.

Mackiamoose

So sorry. Wishing comfort for you.

tjrjr

You are in our thoughts and prayers. 

Sammie Val Marsalli

Your situation really scares me as I am a caregiver for my wife (42 yrs married) in the beginning of the advanced stages.  This is really a slow emotional torture.  I am so sorry for you and your husband as I can relate to your pain.

eaglemom

I'm so glad that you've got Hospice on board. Like other's have said the progression does seem extremely rapid, but I'm not a medical professional. Do not hesitate to call the ALZ Helpline 800-272-3900 any time. Ask to speak with a care specialist and go over everything that has happened. They possibly might have information for you.

eagle

Lindacap

I am so sorry that you and your husband are going thru this. Mine was diagnosed in August 2020 at age 61. It’s torture not to have a roadmap. 

Hang in there... you have many people thinking about you.

Ernie123

I don’t know which is worse: fast or slow. The pain and grief in both situations are heading to the same result. So sorry you are dealing with this. Those of us on this same journey share your grief. I respect your sharing of your emotions and I hope our support offers you some strength for what lies ahead.