New here and overwhelmed

Cat1t · February 16

Hello

I am currently caring for my husband and am overwhelmed. The Doctor just confirmed he is in the early stages. Presented some approaches to dealing with this including the infusions. I shared this with my husband today and he didn't express much interest. Said it sounded like it wasn't safe and just not worth it.

I am filled with emotions….raw emotions. I want him to want to live…..to try and overcome this; I should say extend his life. Don't know how to respond. Feel so lonely.

sandwichone123 · February 16

The research into these new drugs has been so faulty, and the best results I've seen has been "slow the progression slightly," along with a chance of devastating side effects and huge costs. You know your specific circumstances best, but it sounds like your dh is not enthusiastic, and if it's infusions he would need to be very involved.

SDianeL · February 16

so sorry about your husband’s diagnosis. You are at the right place for info and support. Steps to take: get your legal affairs in order now. Don’t wait. DPOA, Medical POA, Living Wills, etc see an elder law attorney. Learn all you can about the disease. Read the book “The 36 Hour Day” and find Tam Cummings videos online. Infusions are trials and the results so far aren’t promising. There is no way to tell if they slow progression or extend life because each person progresses differently depending on many factors including which part of the brain is affected. Infusions have side effects. Please read them before you make the decision. If you don’t have a power of attorney you can’t make the decision if your husband objects. Most people with dementia don’t know there is anything wrong. So his ability to reason is affected. Come here often to ask questions.

Biggles · February 17

Hello welcome to this amazing forum. This is an incredible site and the best place to gain support, knowledge and information about this awful disease. I felt so very much alone before finding this site, my tears flowed all day, I felt bewildered. No one seemed to understand the implications of this disease and I found medical practitioners were some of the most uninformed particularly when it came to the caregivers needs. Keep venting here, keep reading on this site there is so much kindness and help. Take care good luck, one day at a time.

Biggles · February 17

Ed1937 · February 18

Hi Cat. Welcome to the forum, but sorry you have a need for it. I don't frequent the forum very much anymore. My wife passed on 24th of June 2022, but I remained an active member for another 2 years or so after that. Now I just drop in every so often. I saw your thread, and decided to give you my opinion.

My wife was diagnosed with likely Vascular Dementia, in the early stages. She could still make decisions, and was fully coherent. When we were given the diagnosis, the doctor told her he would give her "memory medicine". She was a registered nurse, and she refused it. I fully supported her decision, and I was never sorry I did. She took Seroquel only a month or so before she passed. That was the only thing she took that related to dementia.

I'll just say that if you don't agree with his decision, if he's fully capable of making decisions, remember with this disease, you have to carefully choose your battles. Ask yourself if it's worth having arguments about medications or procedures that he doesn't want to take. I know it's the hardest thing you've ever done, and I'm sorry.

Now about this forum. I think this is by far the best forum for support from other caregivers. You will get your questions answered, and when someone falls, the other caregivers help them back on their feet. People here actually care about one another. Any time you have a question, ask. You will get help here. Learn all you can about the disease and caregiving. Reading a lot of threads is a good start. There are also excellent videos on YouTube.

Bridge4U · February 18

Ed, so glad you still drop in occasionally. I don’t post much, but have been a daily reader the last couple of years as I was trying to learn best practices for caring for my EO DW. I wanted to thank you for all the wisdom and experience you have shared with this community, which has been a huge value for my DW and I as we continue our journey together in this strange new world. Cheers!

Ed1937 · February 18

https://alzconnected.org/discussion/comment/236618#Comment_236618

Thank you for your kind words. I wish I could make it better for people who are dealing with this. I still recommend this forum to others when I see a need for it. Stay strong.

JustLive · February 18

I'm new to all of this. I'm a caregiver for my DH. He was diagnosed with early-onset Alzheimers last year. He just retired from running a successful business for 30+ years. I'm still working full time trying to balance everything as my responsibilities increase at home. Also trying to help him stay busy and productive. Definitely not how I pictured our 50s going into 60. Trying to tap into resources and live with joy as much as we can.

Goodlife2025 · February 19

@ Cat1t and JustLive. My DW with EO was diagnosed at age 48. There are no words for how terrifying the first few months after the initial diagnosis can seem. How can this be happening at such a young age, We were just in the big and fun part of planning our retirement. We should have more time. The only advice I can offer is give yourself some grace to find your new normal. You don't need to have all the answers today or even tomorrow. This site is not only an excellent source of information and will help you to set priorities for you and your LO needs but you will find emotional support you cannot get anywhere else. We are all in it together and while each person's journey is unique to them, we share so much that no one else can understand. Sending you a hug and I am not a hugger. 🙇‍♀️

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