My husband was recently diagnosed with Alzheimer's...

LauraCD

It's now official. Something was going on for the last three years. We've been through 3 neurologists and much denial to bring us here. I am the caregiver and am already completely overwhelmed. I now recognize all that has been developing for the past three years and it makes sense but I have no idea what to do or what I can do. Example: he is now exhibiting paranoia and agitation we argued about before. But -- I cannot argue with him now? It's the disease. I am so clueless as to where to go, what to do, how to help, how to stay okay myself. Does this make any sense to anyone as I ramble?

M1

Welcome to the forum Laura; yes, it makes plenty of sense, we've all been there. You have come to a good place for learning and support, this forum has been invaluable to me as my partner's dementia has progressed.

There are so many aspects to losing your spouse in this--you can't go to him with your own concerns, you can't reason with him--and yes, you can't argue with him in most circumstances. It's unmooring, and it changes your relationship forever. You have to start coming to other places and people for support, which inevitably distances you from him. It's crushing.

Early advice for most is to get your affairs in order asap---talk to a certified elder law attorney about getting powers of attorney in place (health care and financial), updating your wills (he should not serve as your POA or executor), and doing financial planning in anticipation of potential needs for institutional care down the road--there are usually two options, self-pay if you can afford it, or planning for Medicaid application if needed. A certified elder law attorney in your state will be familiar with your state's rules.

As for the paranoia--there are medications that can help, and I would personally treat agitation and paranoia sooner rather than later, as it will make life easier for both of you. Hopefully whoever diagnosed him can help you with this (or refer to a psychiatrist if needed).

If you read a lot of threads here you will learn a lot. Best wishes and I'm sorry.

harshedbuzz

@LauraCD

Hi and welcome. I am sorry for your reason to be here, but happy you have found this place. Come often; there are people who understand what it's like. I also attended a IRL support group which was a fabulous resource for local resources and reviews.

I am very familiar with suspicion, accusations, and agitations. I don't know if it applies to your situation, but my dad had a fairly challenging personality which he mostly kept under wraps in public. In earliest stages of dementia, he lost his social filter and empathy which led to more folks being on the receiving end of his edginess. This behavior wasn't new to me, but he did manage to alienate social groups in 2 states and was working on a third when he was finally diagnosed. Plus, he had conflated memories where he'd recall the gist of a situation but not the what-what-when; so, he'd accuse me of stealing money he'd lost making bad investments or my mom of cheating when that had been his MO.

Kind folks here would tell me it's the disease talking. I struggled mightily with this notion as the ugliness spewing forth were scripts I heard most of my life. That said, I did find it best to allow him to think he was right and go along with whatever reality existed for him as it made manipulating him into doing what was needed easier. Some people even suggested apologizing for "my" transgressions which rankled. But one time when I was video recording one of his tirades for his gerispych in which he was accusing me of being stupid and selling his house at a loss of $360K, I apologized for being dumb and said I'd never do it again just to see what would happen. I was shocked when it worked-- he was stage 5-6ish by this point so YMMV.

This quick read helped my mom and me a lot.

Smashwords – Understanding the Dementia Experience - A book by Jennifer Ghent-Fuller - page 3

Ed1937

Hi Laura, and welcome. Sorry you're dealing with this, but you found a good forum to help you along. Wherever he is in the disease, and for the most part, whatever problems you are having, someone here has been there already, and they are ready to help.

It is vital for you to see a CELA, like M1 mentioned. You don't have a lot of time to waste before doing that, so get it done ASAP.

And the link HB gave you is excellent. Take a little time to read it, and it will give you a good understanding of what this caregiver job is all about.

If you have any specific concerns, post about them here. You will get excellent suggestions about how to handle things. Just about any topic is OK here. People post about family disfunction, sex, food recipes, jokes, and many other things. Others understand, and help.

Iris L.

Welcome, Laura. What you call denial is actually anosognosia, which means the PWD (person with dementia) is unaware of having dementia. If you attempt to confront him with reality, he will resist and become upset, as you have discovered. You have to avoid arguing, as you have learned, and learn to use the work-arounds that the members talk about. The members here are experienced and willing to share. Please keep reading and post often.

Iris

toolbeltexpert

Laura, sorry for the reason you had to find us and as many will say the forum is a life line in good times and bad,if you hang around you'll find we are all family, M1 and harshedbuzz have given you good advice. I would add something that I learned the hard way. Watch your body language pwd pickup more on visual clues of communication. My dw would pick up on my eye roll and then all hell would break open. Learning to tell fibs is also a skill that becomes necessary, as a retired pastor I struggled with this but I have come to understand I can't change the reality that my dw lives in so I have learned to be in the moment.

Stewart

Davegrant

Laura, Welcome. This disease is overwhelming. So, what you are feeling is natural. One of the first things that I did was to learn and understand that I would have to take this disease a day at a time, one problem at a time. I had no idea what I would need to do or what problems would arise. I had to reaffirm in my mind that I would have to live emotionally one day at a time. The only thing that I knew was my DW was different than she had been in the last forty-nine years of our marriage. It started on a day I saw her preparing supper and stopping and looking at me and saying, " I don't know what to do next " and from that day on she never cooked again. The situation progressed to most household chores and functions. Since I had recently retired it was natural that I would fill in for her as we continue our lives in contact with her primary physician (PP) who said that she could no longer drive the car. And the PP told me to blame the doctor who identified herself as a mandatory reporter. I followed her advice and was very grateful because my dear wife ranted for a year over this situation, but I was not in the direct line of fire. So, the last six years have followed this pattern of me learning from PP and web sites, this one in particular, and my following through on the suggestions. In the last six years I have done the legal and financial stuff, gained guardian ship, become the spokesperson to the family and assumed greater responsibility for my wife's safety and over all wellbeing. As I reflect back, I am awed by what I have accomplished in understanding and actions I have taken in relation to this disease. As my DW disease progresses and her progression is slow, I continue to be overwhelmed but will face the new challenges with the support team I continue to build. I still remind myself that I need to live this disease a day at a time. I recently sought out counseling for myself because I have learned that she cannot change so I need to and my dw has progressed to the point that I need more help to handle the progression. My dw has the disease and suffers from it but I also suffer but I have brain cells to learn about the disease and work on acceptance. I would not want to trade positions.

Dave

Rocky2

Hi Laura and welcome to the forum. I too am sorry for the reason, but am glad you joined us. There is strength and some solace in joining with others in the same situation.

Others have given sage advice. I would add a suggestion that has helped me to better understand this awful disease and be a better, although imperfect, caregiver. I learned much by watching online videos by Tepa Snow and Dr. Tam Cummings. A google search should find these. But, PLMK if you need help and I'll post a link or two.

Feel free to browse the many posts or to ask questions or just vent here.

Again, welcome to the group.

Tom

Pinkscarf

Laura,

I'm three years after my DH's diagnosis and probably six since I started noticing something was wrong.

One of the thorniest things to work through for the caregiver is this new normal of married life.

I have gotten more patient but sometimes I still get angry and say, "You can't say that to me," or "You can't treat me that way." Not proud of it but I think it's very human. Sometimes he understands, sometimes he doesn't. Sometimes I cry. Sometimes I don't.

As has been said so well by our fellow caregivers above, one-thing-at-a-time. It's the only way.

Sending good energy to you.

Janet

LauraCD

Wow to all and thank you. This is such a welcoming world where people actually understand the agony of this experience. I personally alter (and falter) between weeping and a focused determination. It is so sad as I'm losing someone I knew and love to this and so maddening that there is nothing I can do to stop it or even stave it off. My crisis mode is to get things done and the advice here is well appreciated. i am getting our financials, legal and healthcare details in order. There lies another challenge as my husband was always the one who handled that with such pride in taking care of his family for all of his adult life.

Now I have to step in and somehow manage to do so without him realizing I'm really making some decisions. He didn't want to do any of this "yet" because it made this "to real" as he is still cognizant of what is happening to him. I managed to convince him that I wanted him to be a part of this while he still can and that is such a sad reality to have to say out loud.

It's not yet three weeks since we got the official diagnosis and i have a list of questions for the next visit with the doctor. Like: Should we see (and is he = the doctor) a specialist for Alzheimer's vs. a neurologist? Is there a treatment for my husband's beginning paranoia, agitation and aggression? How/should we explore clinical trials when I realize any positive results will be well past our present? And of course, how long, how fast, will this progress? Does anyone ever know?

Another question I have and that is not for the doctor to answer -- who do I tell? I am not embarrassed or ashamed but he is. And I want to maintain his dignity. We told or kids and some of his very good friends. But there is support out there if I tell some of my friends and it is a necessary explanation to those I "work" with (there are 2 nonprofits I volunteer for). Some of my previous commitments I simply cannot fulfill because of this sudden development. Additionally those activities I'm still involved with are suffering with some delays on my part that I want to explain. Actually there is a frenzied pained voice within me that wants to say "I'm doing the best I can but you have no idea what I'm dealing with in my personal life."

How do any of you deal with that?

Again, thank you so much for the welcome, the advice, and the kind and compassionate thoughts. My same real appreciation to all of you for what you are experiencing and how you are sharing your wisdom with all.

M1

My parter was also sensitive about "did anyone know" about her decline--and yet herself was rarely aware of it ad did not realize how obvious it was to others (read about anosognosia, if you haven't--it's a true inability to recognize the deficits). My personal advice would be to tell everyone. People were unfailingly understanding and kind, and you yourself are going to need all the support you can get.

There is definitely symptomatic treatment for his paranoia and aggression, and I wouldn't wait on that very long, it can escalate in a heartbeat, and realize that you are likely to be the target. My parter ended up in memory care after threatening to pull a knife on me if I wouldn't let her drive (she hadn't driven in over a year at that point). The driving is usually a big issue, by the way, and one you should address early too.

I think the general support available to you in a research center would likely be good. We have a tertiary care research center relatively near us (30-40 miles), but as her disease progressed, my partner was not interested in making the effort it would take for frequenet visits to participate in the trials. She had only brief trials of Aricept and mematine, neither of which she tolerated and we left it at that, because of a number of other health problems and numerous other medications already on board.

You've answered your own question about speed of progression, it's very hard to know. Average lifespan after diagnosis is 11 years, but it's so variable that no one can give you a good answer. Our first symptoms started in 2014, so we're in our ninth year, in memory care for over a year now.

Ed1937

Laura, I'm with M1. I would tell anyone who should know about the diagnosis. If people don't know, many times they will think he is just a jerk, but when they understand that he has dementia, it's very rare they won't support both of you. He doesn't have to know you told people.

How long does this last before coming to an end? Some people come to the end in less than 4 years, while others might go on for over 20. Those are the extremes, so it's pretty safe to guess it will be somewhere between those numbers. I know that doesn't help much because that's a pretty variable timeline.

There really is nothing for him to be embarrassed or ashamed about. Would he be ashamed if he had a heart attack or cancer? It's simply another disease, but PWD often look like they're normal in every way, and that's why I think it's helpful if others knew.

You mentioned a neurologist. If he is seeing a neurologist, that doctor should see dementia patients as a large part of his/her practice. They will have a better understanding of how to handle different problems coming from dementia.

I'm glad you are getting your legal things in order. Once that is done, you should feel a weight lifted from your shoulders.

Jeanne C.

Welcome Laura. My DH diagnosed with FTD earlier this year and I was right where you are. I know it's A LOT. The people on this forum have been a lifeline for me. Their advice will get you started in the right direction. And I cannot express how much it helps to connect with others who are on this journey.

I agree that you need a doctor who cares for dementia patients. In the lead up to getting a diagnosis, we saw a neurologist who, when faced with my husband's anosognosia, basically washed her hands and said there was nothing she could do for us. Then I found a practice that specializes in memory care and it's been a huge help.

Joydean

Laura welcome. Sorry you need to be here. I completely agree with others that recommended telling others. Our kids and our close friends were used to David being “different “ because of the brain injury he had in 2001 which changed both our lives forever. He had been changing a lot and the psychiatrist that had been treating him during this time finally in 2017 said he had Alzheimer’s. Something he had already warned me about. So for me telling strangers or others was just something I did, but never in front of him because he thinks he’s just fine. Anosognosia is very real.

best of luck to you. You can do this!!