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It has taken 3 months but the neurologist will give my husbands diagnosis in a couple of weeks. My daughter is questioning if maybe I should have waited until her dad is more advanced. He does know that we will meet with neurologist for the results of test and is expressing concerns. My daughter is worried about depression after he hears the diagnosis. He has had symptoms for two years or maybe a little longer. I guess I could go to appointment and not bring him? If the neurologist agrees to that. Was your loved one aware of their diagnosis? Should I wait for him to hear?
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I told my step mother, she said ok, and then promptly forgot about it, she still thinks that there is nothing wrong with her. In her case, there is nothing to be gained by stating it again, so I never mention it.
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In my experience, neurologists are awfully good at telling dementia patients what they need to hear in a way that is gentle. Telling him while he is still competent allows him to plan, if he still can.

Depression is often part of dementia, because brain chemistry is affected by the "brokenness" of dementia. There are needs that can help with that.

Your daughter is wrong, I think.
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He KNOWS somewhere inside and that will cause a twist of anxiety constantly with him. He deserves and he needs the truth, and I think I may be in a lonely line in believing this, but as an RN I think I learned uncertainty is the WORST thing out there, the "waiting room from Hades". Yes, of course he may get depressed. Wouldn't you? Wouldn't your daughter? The important thing is to BE THERE FOR HIM. To tell him that you WILL be there, that you love him, that you will support him in every way. If there are any lies to be uttered let them be lies of reassurance that you will always be able to take care of things. My BROTHER IS AWARE of his probable early Lewy's diagnosis. He and I talk about symptoms, talk about the good days and the bad, support one another, laugh, have got together his directives and I take care of bills, trust, etc. He just wrote me (We areone half state away from one another) that he is adjusting in assisted living so much better than he would have guessed, feels safe and cared for. Feels we can still laugh. We say that we are like Hansel and Gretel walking in the woods hand in hand. We will try to handle what comes together.
PLEASE don't lie to him. Please don't hide things. He WILL grieve. Is this not worth grieving over? But he will feel still a person worthy of truth, worthy of support, worthy of care, worthy of LOVE!
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DILKimba Feb 2020
Excellent advice!
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First, Medicare will not allow the Dr to bill the patient if the patient isn't there.

Let the neurologist tell him. For the reasons Alva gives. Moms neurologist sat down right in front of her and told her and then told her what to expect. One thing was seeing things that were not there. Told her not to let it upset her. He is more likely to believe and listen to a Dr. then u.
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Thanks Everyone.
i would like to add that my daughters concern about depression is about her dads comments about if he has AD he could not put his family through that and i will not go through what my dad went through comments !!! My husbands father had AD. So her concerns are he may have suicidal thoughts!!!
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BarbBrooklyn Feb 2020
Be sure to mention that to the neurologist. Perhaps pass her/him a note as you head into he appointment so that it can be addressed.
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Suicide throws new light on the topic. So, you can’t ignore your daughter’s concerns if she feels strongly about that.

As a rule though, I don’t see the point of withholding information. Yeah, sometimes there may be legitimate reasons to keep something under wraps for awhile. It’s eventually going to come out. People get more upset if they aren’t told about their circumstances.

It can be a relief to have a diagnosis or validation of what is already suspected. Doctors are accustomed to tell patients unsettling news.

Does your doctor have bedside manner that is sensitive to his/her patient’s needs or more of a matter of fact approach?
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It's tricky. All I know is, for our family, we waited too long.

We finally have the Dementia diagnosis as of Dec. 2019, but MIL is probably mid-stage. So in her Dementia mind (and stubborn personality) - "I am just fine. You (Doctor, family member, neighbor, etc.) don't know anything. I am handling my pills and my bills just fine. I AM FINE!"

No matter who tries to help her understand, she doesn't.

So, the fact that you are earlier in the progression, I think is in you favor -- if you want to tell you husband, at least he is likely to understand. I'm sure, as others have said, that your husband already senses that there are things going wrong - at least a diagnosis gives him the answer as to why.

Best of luck, any path you take will be bumpy.
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When my mom got her results I was with her (at the doctor's request). She expected that she did much better on her testing, so when she got the diagnosis and even worse the recommendations she got very defensive and angry.

That was last Spring and she is still mad about it. I'm sure she gets depressed about it too, but I mostly see the anger side. She flat out refuses to discuss it at all.

Everyone is different as you will see from reading the forum. Hopefully your husband doesn't get angry but rather pro-active. Yes, I've seen accounts from people who have gotten a dementia diagnosis and looked for solutions and had concern for their family members as opposed to how my mom got.

With you and maybe even your daughter at his side for support I hope he will try to help himself and family and not get into angry denial.

Good luck, and please let us know how it goes.
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I initially missed the suicidal part. That changes things.

Jan, have you and your husband ever discussed this and he talked about suicide?

I have no advice but agree with Barb to let the doctor know. Every dementia journey is different and if your husband has dementia it will not be the same journey his father took.

Huge hug to you.
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If your husband weren't aware of the tests, already concerned about what might be wrong, and aware that the neurologist will soon be reporting back, there *might* be some argument for delivering the news in stages. But he is aware of all these things and he's worried.

It will be far better for him to hear the factual explanation from the neurologist, along with a clear outline of what to expect and what support is possible, than to be left in limbo, half terrified that he's doomed to turn into his father and half in false hope that it may never happen.

Your daughter is right to be worried about depression. Prepare in advance: go to one of the well established organisations such alz.org and research helping somebody come to terms with their diagnosis. While you're at it, research caregiver's support and resources - because this must be frightening for you, too.
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Don't wait! He should hear it from a doctor..either the neuro or a PC whichever is better at delivering this news. He will lose the ability to understand the diagnosis, or the illness itself and how to have any awareness of dealing with symptoms. If it's early enough, he can take part in support groups and such. Depression is something you can watch for...it's inevitable but not doom. Resources are plenty. Gather the help of professionals. Don't shy away from this. He needs you to be strong and helpful.
His concerns and fear are normal. It's important for him to feel them and be validated and supported.
My mom got her diagnosis long after she could understand what it meant... anosodiaphoria. No awareness of her condition, which means she denies she needs any help. This makes caregiving very, very hard.
best wishes
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It is better he hears it now than when he won't understand it later. No..he wasn't. He was confused...irrate, annoyed, etc. and on top of that, he had brain/melanoma of the scalp cancer..so he was already confused, and in serious pain. If he has already had symptoms for two years, he probably wants an answer to his suffering.
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My husband knew something was wrong, although it was hard to admit. The diagnosis put a name to it and let us get things in order. Many Alzheimer’s folks are affected by Anosognosia and don’t know that they have dementia. This may happen to him later on, I wouldn’t postpone in case there are things he wants to do.
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gdaughter Feb 2020
Sometimes I think the anosognosia may be a blessing in disguise, a protective mechanism of a sort to keep the psychological pain from being overwhelming. No matter what it's a long and challenging ride.
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I have read that many people with the diagnosis have been hiding symptoms for as long as 10 years. They have learned ways to cope, adjust and deflect. If you don't think your husband has had suspicions that "something is wrong" for a long time I would be surprised.
Even now if you think back over the last several years I am sure that there are a lot of little things that may not have seemed like much at the time but if you put them all together a picture will emerge that will make all those incidents make sense.
If this were any other diagnosis would you want your husband to hear it?
Is he currently aware of things going on, can he make decisions? I think if he can make decisions he should be involved in the next phase of what is going to happen.
Your next call should be to an Elder Care Attorney so you can get all the paperwork started that you will need. And it will be daunting. And he, your husband should be able to help make those decisions as much as he can before he is no longer competent to do so.

I suppose the one to ask is your husband. Does he want to hear what the doctor says?
And yes he may get depressed, I am sure he would get depressed if the diagnosis was any life limiting diagnosis. There are medications for depression, there is therapy, there are support groups, there is the love of family and friends. (gotta tell you it will be the friends you will loose along the way that will be difficult. And you will loose friends)
You both need to plan for what is to come.
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gdaughter Feb 2020
I have lived with my parents for decades...it's the way life and income went...it is what it is, for better and worse for all...but my point is that my mother was so slick in covering and had such a history of being the manager and controller of ALL, that even living under the same roof dementia crept in with us ALL being rather unaware. Two tell tale things happened and I'm not now remembering which was first: One was that as was typical they took a trip by air to visit my only younger sister who lives in the FL (aka the good daughter, who of course has never done a thing to be of assistance to them). Mom packed. I drove them to the airport where she was snarky and told (one of the funniest moments of it all in many ways) the ticket agent that I couldn't wait to get rid of them. I was doing a pre-TSA line check of her carryon to make sure there was no contraband. I found a bottle of her BP meds AFTER I had scoured the house for ANY meds and taken over control of that. On arrival in FL and in a new environment my sister called within hours wondering how I could think mom could travel. I was shocked; I saw the 10 warning signs from the Alz Assn and mom had I believe 10 out of 10. And then there was the time I just happened to have an instinctive need on seeing an envelope in the mail from their supplemental insurance...to open it....and find out they were 2 months behind in paying the premium....And that's when I knew...but it all happened so subtly it was right under our noses...
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Has your husband expressed any desire "not to know?" He does know a diagnosis is pending, so he probably would not be satisfied not to hear it.
Contact your local Alzheimer's Association (or the AA website) for help and support for both of you. They have some wonderful resources useful for Alzheimer's and non-Alzheimer's situations.
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The case for having the diagnosis given to you both by a doctor is very strong, as many of the answers here indicate.

By having the diagnosis, you are then in a much clearer situation, both personally and financially. The big unknown is how he will respond to the diagnosis. A helpful book to read would be "Dementia: The One-Stop Guide" by June Andrews. The chart on page 1 sets the challenge. After a diagnosis, there are "two possible dementia journeys: (1) staying well as long as possible; or (2) Going downhill faster than you need." You might have some influence on that decision by your smile and your attitude, but the essential issue is how the person who receives the diagnosis responds. You don't find out until after the diagnosis.

My wife was diagnosed with Alzheimer's eight years ago and has been confined to bed at home for the past 18 months. However, she still lives a life of considerable purpose, often smiling, chatting, inspiring those who see her on a regular basis. Her Mini-Mental-State Exam (MMSE) Score has been zero for more than a year, but she still has numerous insights into both her own life and the lives of others. When she was diagnosed, as we left the medical facility in the car with me driving, she began to whistle the theme tune of the film "Bridge over the River Kai." At the time, I thought, "Yes, our lives have just been blown sky high!" However, as several friends have pointed out to me that tune was also a statement of intent--"We will build this bridge. We will face this challenge."

Another helpful guide is "Can I tell you about dementia" by Jude Welton. This short easily read book describes the dementia journey very honestly. It would be good for you to read it, especially once you know what kind of dementia is being tackled. However, I think it would frighten someone who had just been diagnosed; and is more helpful to family carers so they know what to expect.

The first key decision you and the family and the person with dementia should make is how you will tackle this challenge. Staying at home in your present environment is usually the right solution. Any kind of move can be confusing and difficult for everyone concerned. You may need to make alterations to the house and daily living patterns, but you can care for someone at home for many years, with good caregivers, the right bed and other supports. Perhaps later some kind of assisted living facility might be necessary, but that could be many years away.

And do remember to look after yourself. Otherwise you will not be able to help any loved one with dementia.

Prayers and hopes for what will be a challenging, but hopefully not an overwhelming journey.
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JanBro, so would love to hear an update from you. I think about you and your family.
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Prior, you could ask the neurologist, who has been through this uncountable times, what his thoughts are. My mother's dementia "mixed type" has been an interesting ride. She was never actually directly told in spite of an extended interview with the MD, myself and my dad and her and then a follow up appointment. Or maybe I'm not remembering exactly from the follow up...but it was obvious from all by time we went in she clearly had the problem. She got unpleasant/uncooperative when they attempted to do a depression screening. I'm guessing that over time she realized she was struggling with tasks, and as these years have passed she is oblivious outwardly. Indirect denial, snottiness (Ex: "what are you doing?" WHATEVER I WANT!) It's possible your husband may hear the news, and then as time elapses forget. It's an interesting question as to whether it will spawn depression or not...it would be a reasonable response for anyone...
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"He has to know", is what I would say but, I don't know your husband or you well enough to give you that kind of advice. They have to have enough time to prepare for what they are facing. I sure would want to know! It is never the right time but talking is a key point to human interaction. Sit back and think, would you like your diagnosis kept from you?
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First, I want to assure you that I don’t have all the answers but I will share what worked in my situation as my heart is with you. My dad was diagnosed with Alzheimer’s about seven years ago. He was there for the initial appointments and while it was tough, knowledge is power… Even in this situation. We, his family, were able to step in and let both Mom and Pop know that we will always take care of them and make sure that it is done lovingly and respectfully in an honorable way. This gave them the peace to allow the doctors to try different medications which ultimately have been the best we could ever hope for. Through the years, when things don’t make sense to him or he couldn’t remember something or he was upset, I would gently remind him it’s normal as people with Alzheimer’s get older to experience exactly what he is. “That’s part of the reason you are here living with us now. And, dad, just like I promised, we are here to help you.” In my case, this has always brought him so much peace and calmed him. We are now at a place where we will be interviewing and bringing in home health care as his needs are increasing. While my mom and dad live with my husband and I, my brother and sister will be doing the setting up of that in-home assistant. It takes a village to raise children and it takes an entire family and others to care for our elders. In my experience, it is better to speak truth lovingly so that they can be a part of their own Health decisions while they still have the ability to do so.
I think it brings dignity into our situation.
I’m praying that God will give you the answers that you need.
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I have not read all the responses, but I see where your husband has already stated how he plans to deal with this situation.

I am not an advocate for suicide or even assisted dying. But I can understand why someone would choose that route. He is believing that you all would be better off not going through the h@ll he did watching his dad die brain cell by brain cell.

Death with dignity is not part of the Alzheimer's/dementia journey, more so for a proud man. He needs to be part of every step in his life journey.

Can I recommend that you encourage your daughter to get counseling because one way or another she is losing her dad. She can't intervene and start treating him like he can't make his own decisions, that is part of what he doesn't want to do to his family.

Make loving memories while you still have him and love him enough to let him choose his path through this damnable disease. It will affect all of you no matter how he finishes his life, be prepared for any path, none of us know if we will be here tomorrow.
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Good questions. I am experiencing this issue with my 92 year-old mom. She knows something is wrong and keeps saying "I'm not nuts, I know I am not!" She says she just keeps forgetting things, or denying that we have told her things, or says we "never showed me how that works." Sigh.

I know it is important to have a specific diagnosis of the form of dementia but am dreading that discussion at her next physical. Mom has seen her mother, sister, brother, and friends go thru this and knows what is ahead for her so I don’t really blame her denials.

She always thought my nephews diagnosis of ADHD just made it easier for them to slack off in school. I wonder if the same thing will happen to her once we put a name to it?
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cetude Feb 2020
At 92..yeah there is something "wrong" -- she's old. Get real.
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I too believe that he should be told. Tell the doctor about him thinking suicide. My husband's doctor is very kind when we discuss the disease.

My husband said he was glad to know there was a name for what was going on in his head. It has helped me because I immediately sought help at this website, and the County Office of Aging, I joined support groups, took a class through the Office of Aging, I watch YouTube videos to help me cope.
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If it is Alzheimer's I would not say anything...nothing can be done about it, and eventually no longer aware they have the illness. However, the family needs to prepare such as DPOA, estate preparation, pre-arranged cremation or funeral, and seeing an eldercare attorney.
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My mother had brain MRIs showing vascular changes leading to dementia. My mother's neurologist told my mother, "Your brain is bleeding." This doctor apparently thought those words would be more assuring??? That ended the conversation for my mother! So maybe communicate with the doctor before the doctor announces diagnosis to husband. Get a sense of what the doctor is going to say and how he's going to frame it.
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If you opt to let him hear the diagnosis, he may not recall it, True story - my sister in law was dx'd with Alzheimer's 4 years ago, but she keeps forgetting that she has it.
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I think he should be told. There may be things he wants to do before he cannot do them, like making sure he shares how much he loves everyone. Also, the family as a whole needs to help decide what he wants to do in terms of future care. Holding back on the dx may be harder on him than giving him an honest answer to his questions.

When I was told I had cancer and what they thought would be a very short time, I made decisions that otherwise would have been put off for years. It was important for me to tell my family what I wanted done, and more important to always let them know how much I love them. Blessed that it was 18 years and 5 cancers ago, but at the time it was very important to know and tell my family what I wanted in terms of future care. It also gave me a chance to update my will and appoint someone as Power of Attorney and Health Care Proxy to my wishes would be honored.
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Depression is real. So is dementia. Your daughter is perhaps in a bit of denial that she can prevent either by not being transparent with her dad.
I remember a ride to the hospital to give birth to my son. I remember thinking, “I can’t get out of this. I’m about to have this baby. It’s going to be born.“ I was wondering if I could just throw him up. “Were they really sure how this was going to happen??!!”
I didn’t have an easy time. I think I was trying to make it not happen but it did. As they say, Life Happens and we go on. And we all know it’s not all good and it’s not all bad.

Sometimes I’m just overwhelmed with emotion at how we humans struggle and persist in the face of so much heartache and pain and loss but we do. We seem to have that built in spark that carries us forward to face our destiny in spite of our fears. Come what may. Maybe it’s the love and the joy and the laughter that get us through?

Your daughters fears are valid but the fear won’t stop her dad from having to deal with his diagnosis whether the doctor delivers the news or not.

Here is a fact sheet about depression that will inform about the frequency of suicide in older men and the reminder that depression is treatable but often not recognized. You are fortunate to have a loving daughter to help you and her dad through this passage.

https://www.ncoa.org/wp-content/uploads/Depression_Older_Persons_FactSheet_2009.pdf
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There really never is a 'right' time to tell your husband the dementia diagnosis. Whenever he's told, he may never even believe it. You should definitely have your neurologist be the one to tell him in front of you and your daughter and any other children you may have. My husband was told by a geriatrician in front of our daughter, who is also a nurse, and myself. My husband was also diagnosed with diabetes at the same time. Although it was no shock to us, my husband was devastated at the diabetes diagnosis more so than FrontoTemporal dementia. Diabetes runs in my husband's family with both parents and his sister having it, so it shouldn't have been such a shock. That is only part of the reactions that people with FTD have to any given news, good or bad. Depression, unfortunately, can be expected but you also need to work with his primary care physician as well as either a neurologist, psychologist, and or psychiatrist for medications that work with his particular symptoms and the side effects some of the medications can have on your husband. My husband was on the Excelon patch but, at some point in the 7 years since his diagnosis, it stopped working. My husband became uncontrollable and I was afraid of him. He was hospitalized for 16 days for tests and to wean him off Excelon and on some new meds. One of the new meds made his tremors more pronounced so our family Dr prescribed another medication for essential tremors. He shakes less and he has calmed down quite a bit, for now anyway.
The effects of FTD are different for each person but, unfortunately, the outcome is the same. My husband has moderate-severe FTD and has had it for many years although I didn't know what was wrong with him. My suggestion would be to ask for help in your area for services to dementia patients. Speak with the Dr's for help in your home, assisted living or skilled nursing homes depending on the severity of your husband's condition. Apply for social security disability immediately as he is entitled to it. My husband has been receiving ss disability since age 60 in 2012 when he was diagnosed. You may also want to see an elder law attorney to make out a trust and/or will depending on which state you live in. Make sure you tell family and friends so they are aware. Don't be afraid to ask for help. If you're religious and haven't already done so, pray. It works and I will be praying for you and your family.
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You might call ahead or write a note to the doctor about how much info you think he can deal with, how he handles bad news, if he has had bouts of depression in the past over any kind of issue. You could explain that he is aware of the upcoming meeting and what you think he can handle in regard to details. You might also ask to meet with dr by yourself before the meeting that includes hubby do decisions about how much to tell him.
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