Questions

HappyHelen

I don't even know where to start. How this awful disease progresses? What to expect in each stage. Where to get information.My DH sometimes seems perfectly okay, an hour later he ask the same questions over and over. I am very patient, it is so hard to see him go through this, he was always kind, loving, helpful, now I see a different person and know it is a struggle for him too. Sorry I am just full of not knowing what to expect or how to help him.

Vitruvius

For info on stages I like the narrative format of the fisher scale:

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

Many often recommend the table formatted DBAT from Tam Cummings:

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

Make sure you also have all your legal documents taken care of while your DH can still sign documents. Important are a DPOA and a HIPPA release. Other documents like wills and trusts should also be considered.

Plus everyone here is ready to answer specific questions you might have.

I should also mention that different types of dementia have different progressions My DW has Semantic Dementia which followed a different course in the early and mid stages, but was pretty much the same at mid Stage 6 and beyond.

l7pla1w2

You have found a great resource for getting information. The collective experience of the people here far exceeds what any practitioner can draw on. Ask anything. People here are supportive, empathetic, understanding, non-judgmental.

Keep in mind that the stages are not absolutes, and every PWD is different. It's common to straddle stages as well as not to exhibit some of the behaviors.

In the end, we end up dealing with behaviors, not stages. Repeating questions again and again is a common behavior. It sounds like you're dealing with that very well, patiently answering the questions rather than get angry. It is difficult to witness the deterioration of a LO.

Chris20cm

https://alzconnected.org/discussion/73933/questions

https://alzconnected.org/discussion/73933/questions

Dr Natali Edmonds has talked about preparing for the expected, and preparing for the unexpected. You can find out more about what to expect, from this site, the Alzheimer's hotline, and by going to caregiver support groups if you can. And we have to be prepared for surprises, some good but many not so good. We need plans B and C and more.

trottingalong

Read the 36 hour day. It will help you understand more. It’s learning to live in their world.

Melrob1

My friend, best advice i can give yoy is to get a strong support system during these early stages. Get all your trust and will and all those sort of unpleasant things out of the way while you can. Power of attorney for medical and financial should be built into the trust, as well. And, take care of yourself. It's a rocky road.

annie51

I remember when I first joined here I had a million questions floating through my head. I first searched for posts that might answer some of them, then began asking questions myself. This forum is full of wonderful caring people who REALLY understand what you’re going through. And for every weird thing, new behavior, or feeling you experience, you can bet there is someone who can totally relate. It’s comforting and validating.

Your reaction to the repeated questions is spot on!

Denise1847

https://alzconnected.org/discussion/73933/questions

Hi Helen, Read "The 36 hour day", check out Teepa Snow on You Tube and Tam Cummings.

H1235

I agree that getting all that legal stuff done is important. Don’t forget about yourself. Your DH can no longer be your person if something happens to you. He can’t be the executor to your will for example. I assume you would be his DPOA, but there should be a secondary. I didn’t see a living will mentioned. This is a document that goes through the kind of end of life care he would want. Would he want a feeding tube, cancer treatment, does he want a DNR. It might make thing’s slightly easier to know what his wishes are. I also agree that a plan B and maybe C is a good idea. Keep in mind some facilities can have a waiting list. If you think a facility might eventually become necessary you should also discuss this with your lawyer. A nice facility can be very expensive and you need to consider your financial wellbeing also. I think most would agree it’s best to avoid any talk about his symptoms or even correcting errors. Many with dementia can become upset when these things are pointed out to them. We need to live in their world now and if they say the sky is pink we just nod and agree. It makes life easier.

SDianeL

welcome. Sorry about your husband. I don’t have anything to add to what’s been posted above but wanted to let you know you’re not alone. We’re here for you to answer your questions or for you to vent if you need to. 💜

JulietteBee

Tam Cummings, PhD. provides the answers to the questions you currently have, and those that will pop up in the middle of the night. Here is the first of many.

https://youtu.be/tansVVDM0fE?si=E3TZOdHBPAuvzgP_