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Alan1961

Hi All- Just found this site and wanting to learn. Wife was practicing Endocrinologist diagnosed in april 2023. Lost all income and moved to another state to be closer to family. She is only 57. We were not ready for this-- Financially or emotionally. Finally able to find a house so settling in, but just overwhelmed with everything. Seems hard to prioritize what next steps should be. I have a lot of support from family and church family. But it very hard learning to live with my wife who is suffering her own nightmare. Just hugh emotional roller coaster every week as I try to be strong for her, but often feel so weak.

What has been most helpful for others? Thank you

eaglemom

Welcome Alan. I'm glad that you found us, but equally sad that you are now on this journey. You've both had a huge change with the diagnosis, then add a move and that it a lot to absorb. Yes there are lots of things that need to get done, but if you look at the list you'll be overwhelmed. Plan on a year to get the list of "to do's" completed.

Have you established with a neurologist since the move? PCP? Next would be to get your paperwork in order. Since you've just moved, this might be done already? Medical & financial paperwork all needs to be in order. What about disability? That paperwork can be overwhelming - don't give up on it.

Just one more thing for now. Keep a notebook when you call (or receive a call) from anyone concerning anything you've ask. Document whom you've spoken with, date date and time. Briefly keep notes about the call. You will find that will come in handy. Also remember this is vitally important to you - to those your speaking with on the phone, not so much. Remaining calm and asking for their help goes a long way.

We're here to walk along side of you on the journey no one wants to take.

eagle

sandwichone123

Priorities would be seeing a CELA (certified elder law attorney) and getting basic paperwork: POA, durable POA for healthcare, beginning to consider plans for this very expensive disease. If you haven't filed for disability for her yet, that's the next priority.

Do a lot of reading. You'll get more about day-to-day coping from forums like this than from healthcare providers. Ask questions. Don't take anything personally, whether from her or from family and friends that don't share your perspective.

M1

Just adding my welcome, I am so sorry, am retired internist myself. I am glad you have the community and family support, that was probably a wise move. I wish I could say there were concrete things that help--but very few do, I still grieve the loss of my wonderful partner every day (21 months now in memory care). I live on the farm that was her retirement project and in the home we shared together, that she built and furnished--and that is a comfort because I am reminded of her in my surroundings. The other thing that has helped the most is this forum, frankly. Hope it will help you, too.

Quilting brings calm

I believe that this diagnosis is pretty much approved quickly for social security disability. Start that process as soon as you can, given her age.

SSHarkey

https://alzconnected.org/discussion/67817/new

Welcome and I’m so sorry you are dealing with this terrible disease! Of course your priority is to your wife , but even more importantly is taking care of yourself! If you’re not good, you won’t be able to help her. This is a long battle, so be sure to connect with friends and get the support you need.

Jeanne C.

Adding my welcome and letting you know that the people here are kind and helpful. They have been a lifeline for me. The advice above is great. I've started putting together some helpful posts and sites in a "group" on this forum. Maybe you will find some of it useful.

https://alzconnected.org/group/32-new-caregiver-help