New at this

TyZay

My husband of 45 years was diagnosed with dementia August 2021. This man is so smart, knows two languages fluently, ran a successful business with many people working alongside him. After many Neurologist visits, and testing they say he has mild to moderate dementia. He’s 73 years old.

I’m frustrated and angry that this has happened to him. I am his full time caregiver. Some of the simple things he cannot figure out anymore. Sometimes I feel like I’m not being very nice to him. And I hate myself and feel guilty for feeling that way. I try really hard to have patience, and some days I do really well and other days I find myself getting frustrated. 

Just wondering if any of you have any advice.

Rick4407

Hello TyZay, sorry you have to be here.  It's a difficult journey all along the path, but I think the hardest is the first part of just accepting your and your LO's new reality.   When asked I very consistently say read the posts here and then keep reading more.  You will get glimpses of your possible future.   Every person's journey is different but there are also lots of common elements.  Reading about these ahead of time lets you prepare to a degree.

You need to also, as soon as possible, complete the legal frame work for the balance of your lives.   See a CELA, Certified Elder Law Attorney, and complete the various documents.  These will save your finances.  Others will chime in with books to read.  

You should establish a good relationship with a neurologist and/or geriatric psychiatrist.  While there is little to be done medically, they can treat the behaviors and help make both of your lives easier.   Oh and fill in your profile a little more, state of residence in particular as things are different in different states.  Good luck, Rick       

jmlarue

Angry, confused, and frustrated are common to all of us - especially in the early days of caring for a PWD. Over time, with a lot of help from others on this forum, we learn coping strategies for dealing with the decline in our LOs abilities and cognition. This journey is still hard, but with the support of others, it can be less overwhelming. Keep posting with specific questions and you will get some helpful answers. Just know that at the core of it all is accepting that you will be expected to change your approach and behavior as your LOs cognition and abilities decline. He will (if not already) be completely incapable of reasoning, logic, or a rational response to his memory loss or disturbing behavior. You can learn a lot by reading through some of the old threads on this forum on dealing with current issues as well as preparing for the changes that inevitably come.

One of the first pieces of advice is to get your legal ducks in a row while you still can. You need a Durable Power of Attorney for both finances and health care giving you authority to act on his behalf immediately. Henceforth, you pay all the bills, write all the checks, and hold all the credit cards. You will always need to be present during medical exams and treatment. He won't be able remember all that was discussed or done for his care. Keep notes. If you have substantial assets that need protection, seek out a Certified Elder Law Attorney (CELA) to advise you. It is well worth the fees that they charge and you may well regret thinking you can do this on your own.

A second piece of early advice is to save yourself the anger and frustration of arguing with your LO or attempting to reason with him. It doesn't work. The best approach is always to distract and redirect to tamp down his anxiety and to make all decisions yourself. The days of consulting your DH for his input are gone.

Welcome to the club that no one wants to join. Everyone here is eager to help when we can or just offer a sympathetic ear when you need to vent. Don't be a stranger.

KathyF1

I can relate, my husband is also in the mid stages of Alzheimer’s. He’s 69 years old. I also struggle with patience. I think we all do. Even though I try to tell myself his annoying behavior is the disease, it’s just hard to be patient all the time. Don’t be too hard on yourself! I think part of it is the stress of knowing you’re facing a tough future - it’s scary! Being with friends and family helps SO much, just having other people around as much as possible keeps me sane!

Ed1937

Welcome aboard, Ty. Sorry you need the forum, but it's a good one. People here support each other, unlike others you might find online.

You have some excellent advice above. Seeing a CELA soon is critical.

Scroll down until you find the thread "What Has Happened To Access For: Understanding The Dementia Experience.". Follow one of links for the .pdf file. This will give you a lot of understanding about why things are the way they are, and pointers for handling different situations.  

Joydean

Tyzay, hi and welcome! This disease is definitely not like any other. Alzheimer’s start’s by killing our love ones brain. There is absolutely nothing your husband can do about it, we are the ones that have to learn to change. By accepting the reality our own stress level will be more manageable. Not saying it’s easy, because it is not! It’s one of the hardest things I’ve ever had to do! 

I can and will tell you this forum and the wonderful people here have been a life saver for me! Books, The 72 hour day is a very good one for starters.  Best of luck to you and your dh. 

M1

TyZay, you have found the best possible forum to share your feelings and to learn. I could not have survived the last two years without this group s collective wisdom, insight, support, and humor. I'm so sorry you're in this boat and I well remember the dismay at having to accept it.  Hopefully reading here will help you develop strategies about how to go forward without taking your dismay out on him.

TyZay

Thank you Rick. Your advice is very much appreciated.

TyZay

Thank you jmlarue. I didn’t know about or have heard about CELA, until you and then Rick mentioned it from the previous post.

TyZay

Thank you KathyF1. You are right, having friends and family around, as much as they can is helpful.  And it is scary, I lay awake at night thinking about the future.  I appreciate your advice.

TyZay

Thank you Ed1937.  I will definitely read it.

TyZay

Thank you Joydean. I’m glad I reached out on this site.  Have been receiving a lot of helpful information.

TyZay

Thank you M1. I agree and appreciate the advice.

D.Schuler

I to am new at this DH was diagnosed with ALZ, March 2022. We have been watching him for a couple years and decided it was timed to get the diagnosis.   Days go by and I think he's fine and then he has a bad day and there it is. Today I  put the twin beds in, he can get a little violent at night. Last week I woke and he had a fist made I said are you going to hit me he said yes I said you ok now he said yes, we went back to sleep. Crazy world!  He has hit he twice but his hits at night so far are soft, hence the twin beds. But I have to say harder than that is writing it down and sending it into the universe!  Deb

ImMaggieMae

Welcome to the forum, Ty. You have been given lots of useful information. I don’t know how I would have gotten this far without all the people here.

My husband is a year older than yours and is in the moderate to later stages of stages of dementia. I think the hardest thing in the beginning was accepting that my husband wasn’t endlessly repeating questions or doing the same things repeatedly on purpose. It really was the disease and not him. He can’t really learn to do or not do things anymore, so correcting him doesn’t usually work. But he does get used to routines and doing things in the same way all the time makes things easier. I got angry at first too, until I realized this is absolutely not his fault. We are the ones who have to change. Staying calm on the outside, even if I have to go somewhere by myself and scream, is very important. I am his caregiver and he will live here at home with me unless things at some point would become dangerous. He has never been aggressive and I hope it will stay that way since it wasn’t in his nature before. I am unspeakably sad, frustrated and angry that this happened. But I now try to do everything I can to stay calm around him. There is still some of him in there along with all the confusion. I still love him no matter what. 

M1

Welcome Deb as well. You should mention the nighttime events to his doc. That kind of violence during sleep is a known phenomenon and might require or benefit from specialized medicines. Sleep disruptions of all sorts can be part of the neurological damage in dementia.

TyZay

ImMaggieMae, you have touched on every single thing I have noticed with my DH and things I am feeling. Thank you for sharing with me.

Rjheld

My LO has had a lot of changes recently and need to know if anyone else has these issues.  

1.  He is cold all the time.  He says he wonders sometimes if he sweats and he doesn't know it so then he wonders if he is cold because of sweat.  He seldom sweats to the point that you can even see it.

2.  He says his head feels full (best way he can describe it) and his balance is off.  He walks like he is trying to balance himself most of the time.  He has never fallen.  Also walks very slow.

These are 2 of the issues that are frustrating to us right now.  

Thank you.

T. Slothrop

Welcome TyZay,

My wife was diagnosed 3 years ago (MCI), and I have been benefiting from this forum for the last 2.  I concur with much of what others have written. 

The hardest part for me (so far) is her recent steepening decline, wherein she often does not recognize me (46 years married), and my hurt feelings about that. This steepening slope has turned my mind to MC, sooner than I was expecting to need it. There is guilt even trying to imagine it, but I am supported by friends, and I hope by local family members. 

I hope it will enable me to provide better care. 

Ed1937

Rjheld, nobody here is ignoring you. If you copy what you wrote, and paste it into a new thread, I promise you will get replies. When a thread has been active for a while, people just don't visit the thread anymore, so they're not aware of new people posting with their own questions. Welcome to the forum, but sorry you need to be here.

Dio

Hi Ty, don't think I can provide any additional words of wisdom or comfort, but I am going through all that you are going through right now. The logical side of me knows better that I shouldn't react emotionally, but the emotional side wins every time. I completely lost my cool (as if I had any to begin with) yesterday with DH's incessant repeating of questions and obsessive thoughts, but worse, accusing me of intentionally doing things to confuse him and then the next breath pleading for my guidance. I yelled at him for it, that he didn't get to accuse me and beg for guidance in the same sentence. Then I gave him the silent treatment the rest of the evening. I felt terrible having to do that, but it's better than yelling/saying something that might trigger a violent reaction. He ended up profusely apologizing and looked agonizingly forlorn. Wracked with guilt I felt my heart breaking into tinier pieces.

I've been crying all week, at once feeling wronged and vulnerable, for having to deal with this monstrous disease that has taken over our lives. It's a long dark road ahead, yet... and we've only just begun. I'm terrified.