JEFF'S LIST
"Jeff's List" draws upon my personal experience with Alzheimer's. Your's will be different, but I hope that you find some of my advice helpful. Here goes.
1. Don't delay. You are lucky to have an early diagnosis, which enables your loved one to plan for his care. Explore all potential needs and your options to address them as early as possible. Now would be a good time.
2. Tell your inner circle. Let your immediate family and closest friends know what is happening. If there are ongoing squabbles or strained relationships in the family, now is a time to set them aside. If you don't do this when your loved one is doing well, it will get much harder when he is not. You may begin hiding the truth from those that care for him, thereby isolating you both. This can have devasting consequences - especially for the caregiver.
3. Don't be embarrassed or ashamed. It is common to see people in public or posting on social media, with no hair, who are undergoing chemotherapy. We support them and cheer them on, there is no stigma surrounding cancer. People with Alzheimer's should be no different. They are heroes fighting an epic battle, which they can't win. Your loved one is a hero. Never lose sight of that.
4. Ask for help. At some point, you will need help. There will come a time when it will no longer be safe for your loved one to be alone, and the demands of 24/7 care are overwhelming. When it gets to that point, ask family, friends, members of your church for help. Create an email list or a closed Facebook group, and let your "team" know what you need. Here are some examples:
Ask for volunteers to stay with your loved one from 10 am to 2 pm every Friday. "If you could sign up to help one Friday per month, it would be a great help!"
Ask your church congregation to bring dinner one day a week.
Ask a family member who lives out of town to come in and take over for a weekend so that you can have a break.
Create a list of errands and chores, and ask for volunteers to each take one over.
A note here. Odds are that for every four things you ask for help with, only one person will volunteer to help. But ask anyway, and often. Give people the opportunity to help. You may find there are angels waiting in the wings.
5. Join a caregiver support group. I have listed a few below, and you can find others online. I urge you to start participating in one right away. Your fellow group members are the real experts that you can rely on for advice and emotional support. Start building these relationships today.
6. Fundraise. I almost put this #1 on the list. It feels good to raise money to find a cure, and in the process, you'll meet the family you didn't know you had. Through our support of Alzheimer's Los Angeles, we forged lifelong friendships. These enduring relationships are a part of my Mom's legacy that we cherish.
7. Be a student. Try not to get frustrated as the disease progresses. Instead, look for ways to translate what your loved one is experiencing into ways to care for him better. Experiment! An example from caring for my Mom: we discovered that at certain times of the day she would get very agitated. We suspected that she was hungry, but she would tell us that she was not. We experimented with making her a small meal at those times, even though she said she didn't want one. The result? She always ate it and felt better and calmer after. Fair warning, these preferences will change over time, so never stop learning.
8. Socialize! Go out to dinner with friends. Throw dinner parties. Go to movies and concerts. Travel. Social interactions are your lifeline, but they usually suffer. See #2. Be bold and try to have fun. It will save your life.
9. Live a "brain-healthy" lifestyle. Increase the plant-based portion of your love one's diet. Encourage him to physically active. Help him to meditate or "unwind" every day. Seek advice from his doctor if he is not sleeping well.
I encourage you to focus primarily on items 1-5, and 8 on this list. These are the things I wish we had known, or that someone we trusted would have shared with us. Do the best you can, and don't blame yourself, or your loved one, when things don't go as planned.