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
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!
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.
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.
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.
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.
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.
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.
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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