Is this near the end of dementia?

I think it is different for everyone, but in my own un-professional opinion, it seems it is not yet near the end as he seems to still have some independence and mobility. I know the thought of that can be both hopeful and exasperating at the same time.

My mother has AD and lives in the house shared by my dad. He is her primary caregiver for about seven years. About six years ago mom stopped doing puzzles, stopped reading books, stopped cooking and cleaning the house. These were things she loved to do. She needs help dressing and with personal care, but she has no other health issues and I assume she will keep going on this path, losing more abilities, for a while longer.

There are no words to describe the heartbreak of such a slow prolonged decline in a loved one. I still cry on occasion. My dad sometimes cries on the phone to me, and I can only assume he cries way more often than that. The impact and toll it has taken on my dad has been immense. He refuses outside help. He carries this mostly on his shoulders alone. He will not engage in, nor recognize the aspect of, "self care". He has COPD which used to be managed but is now quite bad. This disease just seems to have so many ripple effects.

I guess I only shared that so you know you are not alone. I hope the appointment in April provides some insight and support. As the disease progresses, as much as you are willing, please take advantage of the support available to you. Even just accepting a little bit of help might bring a huge benefit. Also, those of us here on this community are always here for you too.

My friend's Mom was diagnosed in her mid 50's and lived another 15-ish years. "The end" for her was when her body forgot how to chew, swallow, talk, walk, breath, etc. and she was in hospice. The journey isn't the same for everyone. My cousin was diagnosed at 68 (after having symptoms for a few years prior). It's been 3 years since her diagnosis and she had extreme agitation and required medication. She is now in hospice because she barely eats and refuses to open her eyes (she can, but will have full conversations with her eyes shut). She may still be on meds for her agitation and that may be why she's in hospice this soon, I don't know those specifics.

I'm so sorry you and your husband have to be on this journey. May you receive peace in your heart.

I never put much "stock" in the "stages" simply because my Husband was able to do many things when in reality he should not have been able to do them. conversely there were things he could not do that he should have been able to do.
He was non verbal for about the last 6 years of his life. He would say a word now and then but that was a rare occurrence.
That said there are some things that will indicate more of an End Of Life.
He will stop eating and drinking.
But before that he may need food minced then pureed.
Thin fluids may need to be thickened so that he does not aspirate.
If at anytime you hear or see him choking on food or drink you may have to begin mincing/pureeing foods and thickening liquids.
Please do not consider the use of IV's or Feeding tubes.
He may stop walking
His skin color will begin changing called Mottling.
His breathing will change.

You might want to call a Hospice and ask for an evaluation.
Hospice will help you.
You will get the information and education and support you will need.
And you will get all the supplies and medications delivered to you as well as all the equipment that you will need. This is all covered by Medicare, Medicaid as well as other insurance.
A Nurse will come at least 1 time a week a CNA will come at least 2 times a week to help with a bath or shower and order supplies.

Is there an Adult Day Program near you? These are great. Gives you a break, gives him a break and he can participate in activities.

Is your husband a Veteran? If so the VA may pay you to be his caregiver. The VA may also provide some hours of caregiving and other help for you.
If he is a Veteran to determine how much help he is entitled to contact your local Veterans Assistance Commission. They do not charge for their service and you and your husband may be entitled to a little help or a LOT of help. Worth a phone call!

His decline will depend greatly on the type of dementia he has.
I describe Alzheimer's decline like walking down a ramp. Sort of slow and steady.
Vascular dementia is more like stairs. Where there may be a very drastic decline in a very short period of time.
The two combined is like a ramp with a landing and then a drop down then the ramp continues.
My Husband was "officially" diagnosed with Alzheimer's but I think he also had Vascular dementia. He would be able to do something one day and literally overnight he would be unable to do that very thing the next day. He went from walking one day to not being able to. He went from being able to feed himself to not.

Rexulti almost killed my mom.. commercials clearly state not to give to elderly dementia patients as can cause death .. what?!? when they gave to my mom with dementia she was a different person and we thought she had weeks to live... went from walking in October to bedridden in Dec ..just no interest and a zombie.. hardly talking, no more bingo, didn’t want to shower, asked to go to hospice!! She said she Didn’t want to live that way! We took her off it and now she is walking slowly, laughing again and least out of bed! We did research and That stuff if you read is mainly for schizophrenic people. My mom is far from that and I would not recommend it at all!! She had every single side effect except having a seizure.

Cheeky,

I am so sorry that you are seeing these changes in your husband.

No one can answer this question. Hopefully you will get some answers when you go to the doctor.

I just saw a post from someone who was asking about rexulti for her mom. I am glad to see that it has helped your husband.

I dont think it is near the end . if he can still shower by Himself That is really Great . He May have Lost interest in the cross word Puzzles . My Dad stopped reading Novels and then a couple years later he spent hours reading magazines . They go thru Phases . Sorry you are crying . Find some hobbies you both can do together Like gardening or sitting on a bench people watching eating ice cream . Or going out for Lunch .

Wait for the appointment. If he still is eating and drinking and he is not bed ridden then he has a way to go,
One question you can ask about is the resulting depending on his quality of life.
My MIL was on a med and she went downhill when she was taken off when admitted to a SNF. She still luved another 3 + years

I am going thru similar situation.
My husband has Parkinson’s but no dementia for about 12 years, exhibited lots of signs before but formally diagnosed in 2015.
Lately, few weeks or months he is going downhill quickly.
Sleeping more, eating less, not able to exercise anymore and in lots of pain, lots of symptoms which would indicate either faster progress or some other co-morbidity.
He will have next evaluation in April as well, so I do understand how you feel.
All I know losing someone slowly, looking at the person I know so well and seeing changes every week now is extremely difficult.
And I know this is the time to take care of myself even more.

I think unless he has some other comorbidities, he will likely be around for a longer time. It is hard on caretaker more then on them because we see the decline and it really hurts. I cry too, you have to find a way to release all that emotion or else it will make you sick. 30% of caretakers die before their loved ones, so please take care of yourself and prepare for when things may get to be too much for you. Keep us updated on his condition.

Unfortunately Alzheimer's is the least progressive of all the dementias, and can go on for 10-20+ years, so your husband probably has a few more years to go.
It is heartbreaking watching our loved ones decline so, and I hope you have some help with his care.
And he will get worse, so I hope you have a plan B in place even if it means placing him in memory care, where you can get back to just being his loving wife and advocate and not his burned out caregiver.
Please take care of yourself as you matter in this equation too.