I’m new here

Abby1567

I’m new here to post but have following this for quite awhile. My DH has AD and is mild-moderate in his progression. I really haven’t noticed huge differences although , of course, there are things that are subtly changing. My question is this: is there anybody out there that doesn’t experience all of the awful things that are posted? I read only one post where a caregiver said it wasn’t awful taking care of his wife in the 4-5 stages. He said she had no incontinence or sleep issues. My husband doesn’t either. He’s still the sweet loving man he’s always been. Is it always awful? I can see where this group is a good-send for so many facing this long road ahead. I look forward to being a part of it. ❤️

SusanB-dil

Hi so scared - welcome to 'here', but sorry for the reason.

There is a lot of information here to sort through, and not to 'scare' you, but let's just say that it doesn't get better. Not everything that happens is going to happen to everyone, of course, but it really isn't easy.

And you may find more than once throughout the forum... "If you've met one person with dementia, you've met one person with dementia." Each person, even with dementia, is different, of course. There are stages that have similar traits, but again, they may or may not be experienced in the same way for each person.

Other things that can affect 'this' journey are family dynamics, the type of dementias, the LO's own personalities, and whether or not they have anosognosia, or even other health issues. Also, as caregivers, whether there is family support or none, and our own various situations and our own characteristics we bring to the table. So yes, lots of variables.

(anosognosia is not denial, but rather, it is their reality that 'nothing is wrong')

M1

Welcome to the forum. I think what is inevitably awful is that this is a fatal disease that will in fact kill your loved one if other things don't intervene. But everything else is unknowable-whether your loved one will be easy or hard to care for, what complications they'll suffer, how you and others in your family will respond to caregiving. There are so many variables-you'll see it said here that when you've seen one person with Alzheimer's, you've seen one person with Alzheimer's. Not everything can be generalized by a long shot.

Hopefully this forum can help you be less scared going forward. We all have to take it a day at a time.

WIGO23

So Scared,

We went to one of the leading Memory Care Centers in the U. S. for my DH’s testing and ALZ diagnosis. I asked his chief neurologist if everyone diagnosed will move through all the stages. Here is what he said to me that comforted my initial fear:

”There have been brains examined at autopsy that reveal the presence of ALZ disease while the individual did not exhibit symptoms of the disease while alive.”

This really helped me to focus on the fact that this is a very individualized disease and I trust that not everyone will progress through the stages. I have hope that my sweet DH might be one. I think being positive about that helps me cope with the MCI he had now.

Abby1567

Thank you so much for your comments. I know it’s a long shot, but I pray daily that hubby is an exception to the rule. He is dealing with it so well. Always positive, always loving and kind. I’m so fortunate. I’m reading a book, Attitudes of Gratitude. If you can find it, I recommend it. It’s so uplifting. There truly is something to be grateful for if we look for it!

terei

My mother was comparatively easy to manage during her illness. We could mostly go along with her delusions. Incontinence + dealing with showering were probably the biggest problems.

Lots of PWD do not wander, have hallucinations, or become angry or aggressive. Each person has their own progression and timeline, but it is a fatal disease.

Rae4

I would consider my mother in stage six at this point. She was stage 3/4 when she was diagnosed in 2022. She can no longer handle her affairs in any way, is starting to become incontinent, she takes a low dose of seroquel for delusions, she wants to go home, she asks when her parents are coming for a visit, she doesn’t know most family members, doesn’t want to shower or brush her teeth, she thinks her doll is a real baby, won’t participate in activities, rearranges everything, and still wants to drive. Although she isn’t “happy”, she is kind, has manners, doesn't wander, and loves company and sunshine. With all that being said, my mom is so much easier to mange than many people with dementia. Caring for my mom isn’t awful, but is stressful at times. I wish you and your husband the very best as you continue down the dementia path.