Facing a Diagnosis this Week

jennybeeay · November 9

I am meeting with our neurologist this Thursday along with my husband. I have already heard from this doctor that my husband's recent scan is positive and is consistent with Alzheimers. It indicates frequent amyloid neuritic plaques. I am alternating between depression, fright and a will to rise up and be strong. Can any of you out there give me your impressions of the initial diagnosis and what you did afterwards that you think helped? Thank you very much.

Maru · November 9

My DH who has ALZ was relieved by the diagnosis. He had known something was wrong for several years. I have a medical background, so I had some idea of what that meant, but I discovered that I had so much more to learn. At first, I talkedd to him about the disease and some of the things that could happen down the road. It wasn't long before he really didn't want to talk about it. He prefered and still prefers to ignore it as if it isn't really causing any problem.

I spent a goodly part of the first year alternating between what will i do now, grief, depression and I can handle this. After almost two year from the diagnosis, I think I have leveled out and just iving each day as it comes.

Speak to an attorney and get the legal stuff in order. You will need POA for everything, includindg medical. In the early stage, your DH can still sign things legally, so make sure that is done.

At some point you will tell those who need to know what they need to know. I send out group texts to our adult children to keep them informed on their father's progress.I have learned that they want to help with the burdens and now I let them.

What helped me was to read everything i could about the disease, about the meds that are available (and their side effects!). Fore warned is fore armed, so to speak. The 36 hour Day gives you an idea of what it is like for the caregiver and family. Personally, not my favorite source. I really like the Tam Cummings and Teepa Snow videos on Yourtube. They have helped me more than anything. Neither of these ladies pull any punches. Teepa Snow is especially good on showing how to interact with someone with dementia.

I really am so very sorry that you find yourself here, but this group is wonderfully supportive and there is never any judgement when you think you have screwed up and done something unforgivable. This is the place where you can be honest and, bonus, there are others here who will have great advice or are further along in the journey that can give you an idea of what more to expect and how to deal with it.

H1235 · November 9

Welcome. So sorry you need to be here. The first thing I did was make an appointment with a lawyer. This is very important. Thankfully the doctor told mom she should not drive or live alone. If you are questioning his driving at all I would ask the doctor(give him/her a note, bringing it up in front of your husband probably won’t go well). It’s nice to be able to blame the doctor. You will get blamed for enough other stuff. Mom had been kind of living on her own and one of her biggest symptoms was poor judgment. There was so much to to. She hadn’t replaced her cpap machine when it broke a few years ago and it needed to be replaced, she had lost lots of weight and had basically no clothes that fit her, she hadn’t been to the dentist in ages and needed two teeth pulled, hadn’t seen an eye doctor and she hadn’t been to a hair dresser in a long time. She was always very independent and would not allow help. After her diagnosis it was obvious I needed to take control. Because we were told she should not live alone, so she moved in with my brother, but her house was a disaster! I also did a lot of reading to learn all I could about dementia, Medicaid and how care facilities work. As depressing and scary as it all is I felt better at least having some idea of what to expect and having some idea how the system works. I tried really hard to figure out what to do next. There were so many things to consider. My brother works full time, was she safe alone?, would she qualify for Medicaid?, should we hire caregivers or bring her to Al?, how long would her money last? She constantly wanted to be taken to her house, which caused her lots of stress. Learning different ways to interact and approach difficult situations with your lo can make a huge difference. Learning to never argue is a big one. The first year I was so incredibly busy and stressed! I have attached a few resources that may be helpful. This forum has been such a great resource. There are so many little things that come up that no one can help with unless they have been there.

Tam-Cummings-LLC-Handouts (2).pdf

understanding-the-dementia-experience.pdf

Facing a Diagnosis this Week

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