The final diagnosis of Dementia, Alzheimer’s type is very fresh here. We just met with neurologists who shared results of testing and then with my husband’s regular neurologist a couple of weeks ago. He has not spoken again about the diagnosis since we drove away from the doctor’s office. As his wife and caregiver, I am trying to learn as much as I can. HOW DO I INITIATE A CONVERSATION (or do I?)
Thanks everyone, in advance.
Be open, but be careful. I ran into a situation with my wife not long after she was diagnosed that I didn’t even consider. We were out at the mall, and ran into friends of ours we hadn’t seen in a long time. They asked how we were doing, and I very gently tried to tell them of my wife’s diagnosis. She got very upset, and angry with me, and I couldn’t understand why.
A bit later, after she had calmed down a bit, I asked her why she had become so upset, and she told me “you should have told me FIRST before telling anyone else”...
I was taken a bit aback, because she HAD been told, several times, by me, and the doctor of her diagnosis. She had simply forgotten, and I discovered that generally speaking, she tended to forget every time she was told. Later, I realized when she was asking me what was wrong, she really wasn’t asking what I was thinking she was asking, and I changed my answer to “The doctor is doing all they can, and I’m helping in any way I can”. She wasn’t asking for a diagnosis, she was actually asking for reassurance.
My opinion, based on my mom’s journey I had to just go with the flow. If she was scared I made her safe by soothing her. If she asked about forgetting I assured her that I too an forgettful as everyone else. It is different for everyone. If your loved one asks questions than give information that they can handle. As disease progresses they will forget. So you really want to distract and let them enjoy what they want to do as long as they can!! Never discuss their illness with others out loud. They will be suspicious and you want them to trust you. You are their only reality!! 😞
I agree with the advice to speak openly and with patience and compassion. You are the best barometer of the situation and there are many things to decide together and things you will begin to take care of directly.
I understand the need for knowledge about this disease. I am learning and reading and listening and this is ongoing. Knowledge of this disease, knowledge of things to do, self care, patience, prayer.... I am thankful for this team of people here on this site.
There is a class beginning in Feb from Wicking Institute you may find interesting.
I agree with @A myALZteam Member. It has to be discussed. No, it doesn't have to be forced, but there are legal, practical, and relationship reasons that you need to piece-at-a-time, discuss this. It doesn't have to be all at once or become something you both dread, but it has to be something that you both understand going forward. Even make a list (POA, family, Car, etc) that maybe is only for you, but if he can deal with it, too, include him in making the list and resolving the issues. Only you can tell if he is willing or able to participate - I cannot. You can decide or define how private he wants this to be - we kept our "secret" to ourselves for about 8 years until it had to be discussed with other family members in order for them to understand what was going on. Probably the last two of those private years may have been unnecessary as others could tell something was happening but she was still not comfortable making it public knowledge.
However, in ALL of the time (over a decade) the two of us never pretended it didn't exist and never denied the existence of the need to face and address what was happening. During early years, because of our openness, she could still tell me what she needed and how I could best help. As time went on, I was suggesting things and tasks that I should take over to help her and finally to simply do. At one time, she liked for me to post big notes around in various places (like a reminder in the bathroom of her morning sequence of events) and a big calendar on the refrigerator to remind even the simplest of events and certainly marking off the days to keep up with the day of the week, etc.
PATIENCE (as @A myALZteam Member said) will be your greatest challenge and yet will be the greatest tool in your bag to help you both deal with all that is ahead.
Learn to take a deep breath and say, "OK," to almost anything.
Protect yourself. Be careful that you are not abused. The calmest of people can become aggressive and have violent episodes when you least expect it.... well, you will learn to expect it, probably.... but the earliest of events will seem to come out of the blue and surprise you.
Peace be with you. It is a long, long journey. I am done and I have nothing to offer but my experience and, hopefully, some comfort that it is survivable. Sometimes you will not believe that but it is if you take care of yourself, FIRST.