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What is one thing you would tell someone beginning their journey with Alzheimer's Disease (as a caregiver or facing the disease themselves)?

We all started somewhere with this. I guess I would lovingly tell someone to brush up on their "patience" skills.

[Poll] What is the most important thing for someone new to Alzheimer’s to focus on?

  1. It's so hard some days but I've finally discovered that it's very hard for the patient. One day this lady likes me the next day she tells her family she hates me. Luckily this is about the 8th patient I've had. You have to remember it's the disease not the person. I pray every day that God will give me the patience I need.

    1. Dont loose your hope. Look above to God. All things are possible with him. Get up every morning and make the very best of everything you do.

    2. I love your discussion about making the most of each day. This is what I have found to be most helpful. Each day is a gift. Scott Team Member

  2. I would tell them to do their own research and look for help. Ask questions whenever possible. Don’t wait until someone just offers you help.

    1. I like this proactive approach. I have to go out and find the information and get the help. It doesn't just show up. It's important to be assertive when you need supports and help. Thank you for sharing this. Scott Team member

  3. Find a caregiver coach/care plan consultant to assist with your care needs. Being coachable is important for change into the process of becoming a family caregiver/care partner.

    1. Thanks for checking in. Are you looking to gain information on caregiving resources in your community? If so, I understand where you are coming from because I needed to figure out where to begin when I started the process and ended up checking in with our father's medical team to learn if they had resources to share, which they did. One of our team members, @Kelsey Ramos-Conroy, wrote an article about finding care referencing the internet. https://alzheimersdisease.net/living/finding-and-hiring-in-home-care. If you haven't already, you could contact the Alzheimer's Association and locate your local chapter for resources: https://www.alz.org/local_resources/find_your_local_chapter. Our community is here for you, so please return if you have further questions or need to talk. Warmly, Nancy Team member

    2. , Alzheimer's Association offers a free online training that may be helpful: https://training.alz.org/. And we are always here in the articles and forums and on the Facebook page for questions, and conversation. - Warmly, Donna (team member)

  4. I cannot stress this enough…get the legal affairs in order. My husband has Alzheimer’s and I am his caregiver. 4 years ago when he was diagnosed with mild cognitive impairment we updated our wills and wrote up durable and medical powers of attorney. You will need them for financial and medical decisions acting on behalf of your spouse or loved one. If you don’t you won’t be able to talk to the doctor, change accounts etc. My advice is immediately consult with an estate planning attorney to get these in place. If your loved one goes into the hospital it’s the first thing the hospital will ask for is your power of attorney. A simple thing as closing a credit card or canceling a magazine subscription…you will need it. You are their voice.

    1. I wholeheartedly agree on these points. We were able to get things set up earlier on and this has helped immensely. What would you say to someone who is facing some resistance from their loved one on this? What are some good things to keep in mind? Scott (Team member)

    2. I 100% agree with this - My father is now in a care facility, he was diagnosed 'officially' (though we all knew it was happening) about 4yrs ago.
      Luckily, before he had declined too much he was willing to sign a POA to me (his son) and my sister. He also gave us logins to his financial accounts.
      I cannot imagine what we would have done without that- there are so many medical records, appointments, access to financial details , paying bills etc. - of note, you'll want to get your POA on file with those accounts (especially Medical)...so you don't go through the whole process of explaining/proving each time.

      My advice then, to someone or anyone with aging family members to consider these steps earlier than later. (I think about this for myself, if I should start to show symptoms, I hope that I would be willing to do this). It is very scary for anyone to sign a POA and especially access to financial accounts.

      Lastly - for spouses, be sure you know how to access everything (URL's, logins, passwords etc.) - as well as paying bills. This we should all do truthfully, whether we are showing signs of Dementia/Alz or not; It is surprising how much you don't know that you think you did (like logging in to your IRA online...or auto-pay with a water bill...).

      This is such a devastating, heart wrenching disease - and probably hardest on the family members. Take joy in the little things. I see my dad at least once a week, and while we can't talk about 'old times', or I can tell him about my day - he's excited to see me. Sometimes he knows who I am, but it doesn't matter if he doesn't. He's still there and I love him.

      Most importantly, faith in God. God is in ultimate control of all of our lives. Trust in Him.

      Sorry such a long message -
      John

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