Done

Good morning and welcome to the forum. You have come to the right place. In addition to the excellent advice already given, I would suggest that you document the specifics of the behaviors you observe, place them in a sealed envelope a, label the front with you DH's name the statement "please read before our appointment." Hand them to the receptionist when you go to the doctor's office. If you can communicate before via a portal, that is good too. The purpose is to provide the doctor with as much information as you can.

Also, please consider getting counseling for grief. As you start this journey, you will experience all kinds of emotions that will confuse you and it is important to have someone professional to listen and validate your feelings. Learn about the grief cycle so you can understand your emotions a little better. You will go through denial and lots of anger. I was and still get angry at the loss of what our life was, loss I see every day with the wasting away of my DH. I could go on, but the important thing is to understand that it is not your DH's fault, and that you are really angry at the situation. The is important so that you are not misdirecting your anger at your DH. I know this because I first believed that my husband's sleep apnea and failure to use a CPAP was the cause. Therefore, he caused this. I did learn differently. Be gentle with yourself. I have turned to prayer for my peace.

Keep in touch and know you have friends here and you are definitely not alone.

I'm going to bring up one thing nobody else has talked about.....driving. You state that he has to use GPS now, so I'm assuming he's still driving places by himself. You need to think about what would happen if he were to get in an accident. Even if it was just a small fender bender in a parking lot, and possibly not even his fault, he now has an MCI diagnosis which will come into play immediately. Allowing him to drive after his diagnosis could cause you to lose everything you have.

When I took my keys away from my DH, it was difficult, but I stressed what would happen to us financially if any type of accident occurred. That was all he needed to agree to stop driving. He still complained about not being "allowed" to drive, but I continually stressed the financial implications.

Hang in there, wose. I sometimes think the "overwhelm" feeling you get sometimes is the worst of it. And that will reoccur more than once throughout the journey. It's totally OK to ask questions here. You have gotten some excellent advice already. I'd say that legal matters come first, also. Seeking out a skilled attorney is worth it. You can't really see exactly what may happen, but this allows you to stop worrying about who will be responsible and what your plans will have to be financially.

I will also second the advice about driving. This has been one of the toughest battles to fight for us. I would definitely find out your state's rules about this and senior drivers in general. Our doctor (PCP) was able to tell my DH that he would report him to the state if he continued to drive. It helped, even though I still hear occasional complaints.

Also, someone on this forum (I wish I remember who so I could give them credit) recommended the book Travelers to Unimaginable Lands. I found it helpful as it addresses so much of the caregiver's dilemma as the disease progresses from a psychological and philosophical standpoint.

You're not alone.

Hello from me too...

Emotions....when you make the conscious decision to be the caregiver for you loved one you take on a very difficult position. One that is fraught with some very serious emotions. Fear, anger, resentment, anger, sadness to name a few. You do not get to the end of this journey unchanged.

On this journey, knowledge will be your best tool. The learning will be on going and there will be times that you may simply want to disappear.

We here understand. Additionally we will provide a shoulder to lean on as well as a source of information. We will share with you all that was shared with us as well as what we have learned.

An immediate hint...the shower is a great place to scream as well as to cry!

Judith

Welcome @wose . I'm sorry you have the need to be here, but there are so many kind and knowledgeable people here - there's always someone to point you in the right direction.

I don't have a lot to add, there's already a lot of good info in this thread for you. I'll just second a few things ---

• Get all legal affairs in order - see a certified elder law attorney, finances, wills/trusts
• time to take away the car keys (which is not easy)
• if there's a trip that the two of you want to take, now is the time to do it. I did this with my sister. Her bucket list item was a trip to Italy/Sicily (my family is Italian, so this was a big deal for her). My husband and I made it happen. Peggy was probably early stage 5 then, and even so, that trip was no vacation for me and my husband. We were exhausted by the end of it. But you know what? Peggy will still talk about that trip to this day (she's late stage 6/early stage 7). So, all of the logistics hell was worth it. If I had to do it over again, I would.
• I've never regretted getting a therapist. I see her once a month. I chose her because she used to be a social worker helping Alzheimer's patients and their caregivers. She's amazing and has helped me through some very tough times.

Sending all of my best thoughts to you!

Welcome, Lots of good advice has been given so far. Being a caregiver is hard and can be a long and difficult journey but you do this. It seems like during this journey little by little friends and family that were there disappear and that you the caregiver lose yourself because it becomes all about the person with the disease (PWD). So when you can take some time for yourself if you have a favorite candy or cookie (double stuff Nutter Butters are great) buy them and don’t be ashamed if you don’t share that’s your reward.

This is a learning process and one of the first and hardest things to learn is your Loved one has a broken brain. They may say or do things that they never would before that hurt and it’s the disease and not the person. You are going to fail at times and lose your temper or say something that you wouldn’t it’s ok you are human. You have to learn to forgive yourself! No guilt! It’s hard but your loved one will have forgotten something that you do long before you do.

As I've frequently stated, I'm at high risk as a bicycle rider. I'm not a litigious person, but if a PWD struck me with their car, I (or my estate) would sue for every last cent.

Hello and welcome, Wose. I don't have a lot to add, but a couple things you said struck me. On a bad day, I hear everything from "why don't you just leave!" to "we have never understood each other" and "stop trying to run my life." Things I would NEVER take under normal circumstances, inappropriate tones of voice, all of it. I try to breathe and remember that I would never take this under any other conditions and will never take it from another person ever again. She has no idea she is being hurtful, has no empathy any more and it's all, all about her. This is what the disease does to the brain. They truly don't become bad people. They just act badly.

One thing I'm trying to do, with moderate success, is to make sure every day I do something for myself that makes me happy. Sometimes it's just a long hot shower, or an exercise class or a walk with the dog. It does help.

Last thought: so far I've found that when family and friends and neighbors know what's going on, they are generally kind. The social awkwardness has an explanation then. It's when people don't know and don't know how to react that they may be rude or impatient. I wrote an advance directive to keep on file at the vet clinic and laid it all out. Since then, they've all been very gracious and super kind. It's amazing how many people have been touched by this disease in one way or another.