Early Stage - any advice?

aconite

This is my first post. My DH was just diagnosed with probable Alzheimer's.  He began to have noticeable memory issues in 2020 which became progressively worse during 2021. It took us a long time to have an appointment for an evaluation. We have an appointment in January to see if he possibly has some of the other dementia-causing diseases since he does have some tremors and balance issues.

I have been trying to become more educated but have to say that reading about the disease progression sometimes brings me to tears.  DH has several medical issues including diabetes, balance issues, foot drop, and a pacemaker and has declined noticeably in physical ability to do many activities.  It’s a challenge to follow the advice on keeping him active with his physical limitations and taking appropriate COVID precautions.

Sometimes I feel overwhelmed even at this early stage.  He did most of the minor home repairs and the heavy lifting for our gardening activities – both of which I find challenging to say the least. And we shared a real partnership in other things we did to maintain our home and garden. Because of his balance issues and sometimes his inability to concentrate, even small gardening/household activities are a challenge at times. I have always handled the bills/finances, but miss his input when talking things over with him.  He listens but his response is usually do whatever you think is best. 

I know that the disease progresses differently depending on the individual, and that I’m very fortunate that we still have days when DH is much like himself.  I shouldn’t feel sorry for myself, but I do. I’m also the worrier of the family – so I think that contributes to my feeling sad.

I am trying to face this with a positive attitude and am wondering if anyone has a list of things to take care of in these early stages.  What resources are best for guidance during the early stages?  And what do I need to have in place in case something happens to me?

Ed1937

Aconite, welcome to the forum. We have a great bunch of people here to help whenever you need it. Sorry you need to be here.

I think the very first thing you should do is to make an appointment with a CELA (certified elder law attorney). This is a very important step, and you are lucky that he is in the early stages because some people wait too long to see the attorney, and they are truly sorry they did.

With early stage, you will be pretty busy with doctor appointments, testing, and taking care of what needs to be put in place for you. Your husband will need to understand what he is signing when you see an attorney. You will need durable power of attorney for financial and medical. Please call for an appointment soon.

Crushed

Please fill in your profile especially with your ages children status and state of residence.  That way we can help

piozam13

This group helped me a lot.  I was able to accept and anticipate. Keep coming and reading posts.

M1

Hi Aconite.  Ed is absolutely right that the first order of business in early stage disease is to get your legal and financial affairs in order.  You will need durable power of attorney and power of attorney for health care, and you will also need to have your own papers updated:  he will not be able to serve as your POA or executor, so you need to draw your papers up with an alternative named.  A CELA (you can find lists at nelf.org) can also help you figure out if you need to start financial planning to qualify him for Medicaid in the future, if placement might be necessary and you cannot pay for long-term care out of pocket (most cannot).  You can also figure out who would be named to take care of him if something happened to you:  children, other relatives, even a professional care manager if needed.

Getting these issues addressed can help you feel prepared for the future regardless.   I took these steps shortly after joining this forum two years ago; my partner was stage 4 at the time and I am very glad those things are taken care of because she is stage 5 now and no longer competent to make further changes.   When I say stage 4, you might be interested in looking up Tam Cummings' stages of dementia (a good descriptive list).  Good luck....

jfkoc

Hi from me too.

All of the above but please add careful diagnosis. Lots about this online and also on ALZ.org (at the top of this page...it is loaded with all kinda of info).

We of course are here to support and listen to each other and to share some really helpful information/solutions.

Welcome1

Iris L.

Along with getting the legal and financial affairs in order, enable home safety measures.  Consider the memory meds, they may work better if begun early.  Do your Bucket List if you have one.  Do what you want to do now while you still can. 

 Iris L

Marie58

aconite, welcome to the forum. I don't have anything to add to the already great advice you got regarding what to do. I do want to add though, that feeling overwhelmed by it all and sad are very normal. But getting those things done early is not only the smart thing to do, but you'll feel some sense of relief once it's done. Blessings to you!

Ernie123

In addition to the good advice above, I recommend you contact your local Alzheimer’s Society and make an appointment for yourself to meet with a counselor. They will provide you with a great deal of specific advice and information. As the condition progresses over the coming years you will find their support valuable. Join a support group and you will get the advice and support of others just like you who are saddled with the challenge of caregiving. You cannot deal with dementia caregiving alone.

Paris20

Aconite, you have every right to feel sad and sorry for yourself. There’s plenty in AD to create all sorts of negative emotions. Don’t beat yourself up over that. It’s part of grieving the loss of a loved one while he’s still alive. I actually participated in an online grief support group because we go through many similar stages. It’s an odd experience but I’ve learned to accept the oddities of caregiving for a loved one with AD. Your goal is to gain acceptance of what is, keep your husband safe and calm, go easy on yourself, and make peace with what’s happening. This all takes time. Good luck.

Ernie123

Another bit of advice I have is to start a journal to record your DH behaviors and changes. As time passes it is hard to recall what happened when. The information is very useful when meeting with doctors since you can be precise. As a caregiver my brain was a snow globe most days and I needed the journal to accurately document what was happening. Just a sentence or two each day. For example when my DW was referred to a geriatric psychiatrist three years ago I could review my notes and relate the number, extent and duration of her delusional episodes which started gradually and increased in frequency over time. This helped the doctor prescribe appropriate meds. I started my journal in 2015 three years after my DW was diagnosed and still make entries today even though she has been living in a Memory Care Facility for two years. I record my own feelings and observations. It gives me a sense of control and perspective.

I hope the advice you are getting here helps you with the challenges you face. With a bit of support you will surprise yourself and find you deal with whatever comes up one day at a time.

aconite

Thank you all very much for the welcome, advice, and support. I'm so glad that I decided to join and to make a post.  I'll follow up with the suggestions (and have already added some more info to my profile).  Thanks again!

QuincyLF

My father was diagnosed 3 years ago.  A few additional tips that have helped my mom and me:

- Read the book "When Reasoning No Longer Works" - it's on Amazon.  Very helpful for caregivers to read & understand behavior changes, progression, etc.  My mom still refers back to it frequently as my father progresses through the disease.  

- Research good caregiving services in your area.  There may come a time when you will need a few hours a day to yourself.  Having a good, dependable service arrange for a caregiver to help you (even if a few hours a day, a couple days a week) will be a tremendous help.

- Prepare for behavior changes & know it's the disease taking over - not them.  There are glimpses of "the old dad" but much of his current behavior is not the person he was.  Pacing, shadowing, anger, cussing, confusion.  It's the disease - not them.  I always though it was a memory disease - but boy was I wrong.  The hardest part is experiencing behavior changes - that they simply can't control.  It's very important to meet with your doc/neurologist regularly to consider medications that may help throughout the process.

- Get creative with things to keep them busy & occupied.  Games, puzzles, walks, activities, music, TV shows, you name it.

I am sorry you are going through this - but know that you are not alone.  This forum is a tremendous help.  You can search various topics & get more insight as things progress.