New diagnosis - scared and looking for support

lsjay

My husband has been having dementia-like moments for the last few years, but has gotten significantly worse this past year. We recently discovered brain atrophy and other abnormalities. We have an appointment with the neuro next month. Meantime, should I share my fears with my spouse? He complains that he doesn't know why these things are happening to him, why he can't understand or do simple tasks anymore. Or should I wait until the doc can present the facts. My husband has anxiety, especially when it comes to his health. I'm pretty much all alone with my fears for another 6 weeks.

toolbeltexpert

Isjay I wouldn't bring it up till it's time. It can lead to more anxiety for you both. I know your worried about it, don't worry it will not fix it. Instead enjoy this time it's still early learn as much as you can prior to the next appointment. Make a list to share with the MD and do that privately. Your not going behind his back your being his advocate. Have the simple things been ruled out? It sounds like you've been going down this road and may have already done that? Seeing an elder care lawyer to get all the necessary ducks in a row, dpoa, Medicaid planning, estate planning. I waited to long to do some of that till I was in crisis mode and learning on the fly isn't good when your dealing with a lo who has had a major episode and is now in a geripsych. I know this all seems overwhelming and it is so do it as opportunity arises. Keep posting and reading there will be others with sound advice. Hang in there your part of the family of caregivers now, we stick tighter than a tick on a dog's ear.

Stewart

jfkoc

This is likely the point at which you join your husband's page. It is time to carefully weigh what is shared and the bottom line is "do no harm".

What does this mean. Well it means just that from this point on.

What you can do right now is listen. Listen for the emotions and acknowledge what he is feeling. He is afraid and confused. You are now the shoulder to lean on. Hugs are the order for the day.

Get a diagnosis and be certain that it followed all correct protocol.

This is really hard and a big responsibility but you can do it and, by the way, you are now not alone. We are here. We understand and we care!

-Judith

Ed1937

Isjay, welcome to the forums. Sorry you had reason to find us. But the forum is a great help for all of us here. People will share their experiences, and what works for them. You will also get a lot of support and understanding here.

I wouldn't mention the word "dementia". Even if he gets that diagnosis, I think it is well left off any conversations with him unless he brings it up. By making it as easy on him as possible, you will also make it easier on yourself. Try to put on a "good face" for him, even if you are hurting. PWD pick up on our emotions, and that can make things harder for them. So smile, let him know you love him, then leave it at that. Maybe put some music on for both of you. That should help.

Now that you're part of our community, be active. That will help you get the most out of it.

Jeanne C.

I was right where you are not that long ago. It's terrifying. This forum is going to be a lifeline for you (at least I know it has been for me). The participants here give great advice and a shoulder to lean on.

In addition to the suggestions others have given (especially working with an eldercare lawyer) I also recommend talking to someone at Alzheimer's Association - they have a free helplline with social workers (https://www.alz.org/help-support/caregiving) and were able to provide me with some basic information about dementia and caregiving. It's a good starting point.

As weird as it may feel, you're going to need to keep positive for yourself and your husband and learn to redirect and sometimes fib to help keep him calm. This is scary for him and he most likely doesn't have the ability to make sense of it.

Sending you a virtual hug. You're not alone.

RickM

Great advice. The Alzheimer's helpline saved me with great advice when moving my dad to MC blew up.

M1

Welome Isjay. One of the hardest transitions is not being able to share everything with your spouse like you used to. Including your fears. My partner started showing signs of cognitive decline nine years ago (at age 73) and is now in memory care. She blew up at me when I told her I thought she had dementia, and I held out great hope that hearing it from her doctor would give her lightning-bolt insight: suffice it to say, that didn't happen. There have been rare moments when she was aware something was happening to her and we could grieve together, but they are long gone. I tell you this because: don't expect that the doctor presenting the facts is going to change anything. it will probably cause acute anxiety in the moment, but then he will likely forget it and still wonder why this is happening.

The degree of responsibility is staggering, and it hits you all the harder because you have lost the person with whom you would share ad discuss such a momentous event. But you have come to the right place to not be alone with your fears. This forum has been much more help to me than any IRL support group (of the two I've tried).

lsjay

Thank you all for your kind words of advice and support. I will check out the Alz helpline. It's so overwhelming and I can't help crying, "why me", "why us". It feels so unfair that the last years of our lives will be harder than the first 70. I thought I could handle anything after we moved last year. That nearly cost me my life. I don't want to dread the rest of my life (and his) but find it hard to see anything positive. I know. I'll enjoy our time together even more right now. In fact. I'm going to get him to take a walk with me, like we did in the 'old days'.

SDianeL

So sorry you are going through this. My husband is 78 and was diagnosed about 2 years ago but more thorough diagnosis a year ago. (long story about the VA). As others have suggested I would not tell him. It will be better coming from the doctor. First go get a DPOA now. My brother-in-law told me to do that & now I'm glad I did. He can no longer sign his name and we sold our RV a few months ago. Also ask for a Neuro-Psychologist to do a 3 hour evaluation. Be aware though, we told my husband he had dementia a year ago and he asked recently "I don't have dementia, do I?" I said yes you do and quickly changed the subject. Get the book "The 36 Hour Day" it will help so much. This forum helps so much. Just knowing you're not alone. I say when people ask that we're taking one minute at a time. No longer a day at a time because with dementia, things change fast.