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?
Thanks
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.
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!
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.
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!!!
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?
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.
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.
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.
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.
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
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.
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.
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.
I think it brings dignity into our situation.
I’m praying that God will give you the answers that you need.
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.
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?
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.
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.
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
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.