New to Group

Carma L

Hi everyone. Don't know where to start, so I'll just jump in. My DH is early Onset. DH is 80 & I'm 70. I've taken over doing most household, paying bills, doing taxes. No formal dx. But his Dad, Brother & Sister all had it. Plan to have that "difficult " discussion with PCP next week. My primary concern is that he looses everything. Always asks me the same question over and over. Follows me around alot. Still does his ADLs. Drives and sometimes can have a short discussion, but only me. DH can't talk on phone & can't use cellphone. I guess I'm lucky. But I cry easily & frustrated so much. How can I get to a better place?

charley0419

He drives!! I’m new here but driving needs to stop. If something happens all insurance company need is excuse not to cover

Carma L

I've agonized over this. At what point do you take away what independence they have left. I ride with him sometimes and he is OK.

Jeanne C.

Hi Carma and welcome. It's a lot to go through, getting a diagnosis and a plan. In the early stages of dementia, it's important to get things organized. And it's very important that you take care of yourself, too.

Upcoming appointment: try to write down the things you're seeing. People with dementia are not reliable in reporting their symptoms, so the doc will need information from you. I find handing a note over or sending an email through the patient portal works well and keeps me from upsetting my husband who does not understand that he has dementia (anosognosia).

Financial/legal: to protect yourself, your husband, and your assets it's advisable to see a certified elder law attorney (CELA). You're going to need power of attorney and other documents as your husband becomes less able. And someone besides your husband will need to be your intended POA. Have the initial meeting without your husband so you can speak freely. And get it done soon while he an legally sign.

Driving: everyone is going to comment on this. And, yes, it sounds extreme. It's not a matter of can he drive. It's not a matter of getting lost. It's that he is losing reaction time, the ability to make wise decisions, and executive function. You will be held responsible if he's in an accident. Do you want be responsible for someone being hurt or killed? It's challenging but have your doctor help. He really really should not drive.

Take care of yourself: caregiving is hard. Make sure you're taking care of yourself. Ask for and accept help. And learn what you can about dementia. Here are some resources I've been collecting to help: https://alzconnected.org/group/32-new-caregiver-help

harshedbuzz

@Carma L.

Hi and welcome. I am sorry for your reason to be here but glad you found this place. You've already gotten a lot of good advice and I'm sure your lived experience with in-laws will be valuable going forward.

A couple of thoughts:

Seeing his PCP is a good place to start with the bloodwork and imaging that can rule out other, potentially treatable, conditions with similar symptoms. If this appointment will be the two of you, make sure you give the doctor a list of your concerns either via a patient portal or a written note discretely handed off at check-in with the instructions that the doc needs to look at it ahead of the appointment. Doing this will help you avoid being perceived as throwing him under the bus. I always sat behind dad (and now mom-- she doesn't have dementia but is an unreliable reporter) to non-verbally confirm or deny the accuracy of the history they give the doctor. This is much appreciated; a good doctor will be looking for this.

The driving issue is hard. If it helps, you aren't robbing him of his independence-- dementia is. In dementia-care, safety trumps everything else. The problem with driving is that it's one of those things that's OK until it isn't. Your first clue it's time to stop could be when he mows down a couple kids at the school bus stop or ends up in the next state lost and confused. You say he can have a short conversation but only with you-- what happens if he gets pulled over by a state trooper?

Liability is an issue here too. Your policy might not cover an accident if he's found to have dementia. If he has an accident, he could be sued and need to go through the deposition and trial at a point where his disease has progressed which will be hard for him and it could cost you everything. In many places, a POA or next-of-kin is exposed to liability if they allow an impaired person to drive.

I know this is really hard. Many PWD, men especially, are devasted by losing their driving privileges. In the context of anosognosia, many won't ever be able to understand why they can't drive and can be quite ugly about it. Driving was everything to dad. Everything. He was verbal until the end and we heard about it daily. Fortunately, his neurologist banned driving which allowed us to be allies and validate his feelings. The very last conversation we had was about asking me to bring him a car in case he needed to go somewhere. By that point he was in a secure MCF, so I could easily promise I would next time.

HB

l7pla1w2

Welcome. You have come to the right place for sympathy, empathy, compassion, advice, understanding, help. Be sure to read through lots of other discussion threads. Look up "anosognosia". Your DH probably doesn't understand he has dementia, but it's not denial.

You will discover that your DH's behavior is (all too) common for PWD. Losing things. Check! (Usually what he has "lost" has actually been stored in some "creative" place other than where it should be or where you expect it.)

Repeating questions. Check! You will learn patience and strategies for dealing with this. You may end up repeating rote answers or distracting him with something else. It's hard not to get angry or impatient. Just understand that it's not malicious. He simply doesn't remember the answer.

Following around. Check! You're his world now. He depends on you completely, whether he realizes it consciously or not. The 24/7/366 (2024 is a leap year :-) nature of his dependence will gradually become exhausting, and at some point you will need to find respite through either home health aids or a memory care facility.

Everyone will tell you to take care of you. It's easy to forget that when you're consumed with taking care of someone else.

jfkoc

The bases seem to be covered in the posts above so I will just comment on getting to a better place.

You need to study. Dementia 101 is required. Please get any book by Naomi Feil from your library or bookstore. Others will mention sore books.

So much of your journey is dependant on what you know about taking care of someone withh dementia.

Three starters. Do not argue. Do not reason. Expect nothing from your husband and finally be flexable. Your life is going to be different now...you do the adjusting.

Oh, lest I forget. Crying/screaming/swearing in the shower is mandatory!

Bubalee

So helpful already!

JDancer

Early onset usually refers to dementia that appears before the age of 65. Is this the case with your spouse, or do you mean they're in the early stage of dementia?

Ed1937

You have some excellent advice above. So I'll just say you need to see a CELA ASAP. Don't wait or you may be very sorry. Here are a couple of links for you.

https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun  

Why your loved one doesn't believe they have dementia- It's NOT denial. 

Carma L

Your comments are very helpful and welcomed. What a great group. I see a long journey ahead of us. I'm glad I found you all.