dementia long haul

Crushed

I am struck by how many people in DW's facility have been in stage 7 for years.   DW was on hospice over two years ago. By then she had lost all recognition of me, all intelligible speech, could not feed herself etc.    The only decline I can see over the past year is a loss of smiling and an inability to respond to any spoken "directions".  She walks the halls  all day  Her health otherwise is excellent  

Jeff86

Thank you for this observation, Crushed.  It’s a good reminder of how useless the ‘guidelines’ are for how long PWD’s spend in each stage of AD.

It reminds me of that old saw about a man who drowned in a river that was four feet deep on average.  

Not only are the ranges of each stage’s duration so wide that you could drive a truck through them, but also the skew and standard deviation are so high as to render the estimates nearly worthless.

DW has been in late stage 6 for some time.  Often I’m grateful that progression hasn’t gone faster/further...sometimes I wonder how long this whole AD ordeal will go on.  It tests us, as caregivers.  

Rescue mom

I have seen people in facilities who were bedridden and appeared to be stage 7 (never discussed so details with their fam) for several years. It seems horrible, nightmarish. I am certain I don’t want to exist that way, but they can’t do anything about it. Crushed, at least your DW is mobile and appears....not unhappy. That is something you still do for her. 

My own DH is losing memories so fast, and is totally apathetic. Can’t converse, watches TV but doesn’t “know” what’s on. With losing all “executive function” and ability to do anything that requires memory or a process, so completely and totally, he is still ambulatory. It’s like waiting for the next shoe to drop. Some things go so fast, yet others (lost early by others) remain much longer than expected.

Not sure that makes sense, it all just seems unending. How long can we *all* go on?

M1

I know I'm not alone in this, as we've discussed before:  but I find myself thinking that it would be merciful if something else intervened--for my partner, a recurrence of the lymphoma is the obvious thing that could happen, among a jillion others.  Have to be careful what you wish for.  But the slow, relentless decline is brutal in its own way.  On all of us.  It's all hard.  Not a cheery day!!

Marie58

This is one of my fears. DH was diagnosed 5 years ago and declined quickly. He's non-verbal, just sits most of the day, and can't really do anything independently. He still follows one step directions albeit slowly and after it's repeated to him several times. He eats finger foods and even needs reminders to eat, so even that isn't really independent. But he's otherwise quite healthy and 'only' 65 years old. When I hear about PWD living 20 years after diagnosis, I cringe. I don't want DH to die, but I don't want him to live like this either. It's so sad.....

June45

If you add up the months on the FAST chart for the course of Alzheimer's stages 7a - 7f, it is 7 plus years. And that is just for stage 7.  Very sad.

JoseyWales

It's a long road.

DH first went to a neurologist 10+ years ago, at age 47. MCI diagnosis 9 years ago. He's only now early stage 6. So much for EO moves quickly....

Seasons In The Sun

I too am amazed at the length of time in late stage seven. In my case my DW has been wheel chair bound for three and half years. She can no longer support her weight when lifted. Hasn't uttered a word in years. Incontinent for four years. Smiles are very rare. DW has been in a memory care facility for 21 months now. Has to be fed ,clothed, showered everything. She has lost 46 lb. in the time she has been in memory care. She is now at 85lbs. on pureed food. Stage 7 has been about 3 1/2 years now maybe longer  I've lost track.  I am amazed she still survives. Next month will be our 53 wedding anniversary, But my wife has been gone for five years now. Alzheimers has got to be the worst disease there is . Ours has been a 12 year ordeal. 

  I do get to see her at least five times a week.  But watching her turn into skin and goes is heart wrenching. Best wishes to all on this horrible journey. It's too emotional to write anymore.

Crushed

Seasons In The Sun wrote:

. DW has been in a memory care facility for 21 months now. Has to be fed ,clothed, showered everything. She has lost 46 lb. in the time she has been in memory care. She is now at 85lbs. on pureed food.

In general a person who is losing weight is underfed. I put enormous effort into making sure my wife got fed enough.  It does not cure anything  Forget low calorie foods. The food has to have high caloric value AKA dessert and junk food. I fed her cake and ice cream for breakfast.   I got her from 98 to 120 pounds

My brownies were especially good.  Same caloric density as survival rations. 

If she cant chew mix cake and ice cream into a slurry.  I fed her yogurt also