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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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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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Reply to AlvaDeer
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DILKimba Feb 6, 2020
Excellent advice!
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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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Reply to BarbBrooklyn
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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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Reply to Countrymouse
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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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Reply to JoAnn29
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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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Reply to gemmab123
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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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Reply to Grandma1954
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gdaughter Feb 8, 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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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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Reply to BritishCarer
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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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Reply to SharonGrace
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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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Reply to calicokat
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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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Reply to MaryKathleen
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