People are abandoning me. I’m a freakin’ lone ranger.

So here’s the crappy truth: dementia makes people uncomfortable. Perhaps they feel badly talking to someone who either cannot understand them, cannot communicate back as expected, or cannot maintain a conversation because they keep forgetting what was said. Perhaps they are worried they will get it themselves and don’t want to think about it. Perhaps they just cannot stomach seeing someone they love change in such a dramatic way.

Whatever the reason, this discomfort will cause people to walk out of your life. The funny thing is that there will be people who will stick around whom you never expected. My dad has a friend who, for a long time, came by once a month to take him for a haircut and a donut. They weren’t best friends, and I actually do not know him well, but he is one who has been loyal and supportive like no other.

When people stop spending time with you or make up excuses, please, please, please do not take this personally.

This is about them; this is not about you. Here are three ways to start coping:

  • Embrace those who are there for you
  • Join a support group
  • Talk to your people

find the best support for youEmbrace those who do come around, don’t stew over those who do not.

Embrace the people who do come around, and empower them to help you if and when they ask. Have a list of things you could use help with ready to go when someone says, “what can I do?”

Share with them what they can expect when they come visit and how they can best provide love to your loved one. Share with them what he or she is capable of doing (maybe going for a walk or sitting out in the garden) and make sure they know what to avoid doing.

Let them know how much it means to you to have them there so that they continue to be there for you. If these individuals know how powerful their time with you is they are more likely to make it a priority.

Join a Support Group.

Regardless of the people who stay in your life, I strongly recommend joining a support group (usually sponsored by the Alzheimer’s Association or another group at a local hospital or research center – the one in Phoenix that I love is with Banner Alzheimer’s Institute). Most are in-person, but there are some online that can be helpful, too. There are also groups on facebook and reddit that you may find useful.

Phoenix-area Support Groups 

Under 40 Online Group – through Hilarity for Charity

Facebook Support Group 

Reddit for dementia

No one will ever understand what you are going through like those who are going through it as well (or have been through it in the past). Take advantage of this. You are going to have a ton of questions, and these people are a wealth of knowledge. Almost everything effective that my mom learned, she learned from her support group (such as carrying cards with her that say “please be patient with us, my companion has Alzheimer’s disease” to hand to various service workers like restaurant servers or airport personnel).

Beyond that, the caregiver support group circle is a place you can laugh at your situation and not feel like a jerk. I think laughing as much as possible is so powerful. When someone you love loses brain cells and as a result, cognitive function, it can feel like a cruel joke. You regain power by saying…you can take some memory and some function, but you cannot take my joy or my sense of humor.

Talk to your people.

Finally, talk to your close friends and family…and be open and honest. Let them know how shitty it is and allow them to listen and be there for you. It takes courage to share when you feel scared, sad, or overwhelmed. Remind yourself that you deserve support – no superhero operates alone. Set up a system that allows you to reach out on your terms but that also ensures you get the support you need.

If you have a little trouble with this, perhaps share this post or other aspects of my blog with your friends and family so they can start to explore and understand.

Be strong, superheroes!

Raw links if above do not work for you:

Facebook: https://www.facebook.com/groups/243952378956864/

Phoenix area: https://www.alz.org/care/alzheimers-dementia-support-groups.asp

Under 40 online: http://www.hilarityforcharity.org/#!get-involved/c1eju

Reddit: https://www.reddit.com/r/dementia/

A Mindful New Year

Feeling overwhelmed is normal; but don’t let that keep you down. Getting to a place of control (even if it is just perceived) and feeling a sense of calm CAN happen for you if you work on it.

As we kick off a brand new day in a brand new year, take this time to evaluate how you feel.

What are you proud of in 2015 (getting that appointment with a great doctor, learning a new trick to get your LOWD into the shower, finding 20 minutes for yourself each day)?

What are you grateful for (those moments when your LOWD looks at you and shows love, your dogs, your kind neighbor who brings in your mail)?

What do you want to learn this year (how to balance medications correctly, how to fit in exercise)?

And what will you do for YOU?

Consider what is important to you in these next 365 days. You are a superhero taking care of someone who truly needs you, but you are also a person; you are also still YOU.

happy new year!

My challenge to you, as millions write down their New Year’s Resolutions, is simply to think of three things that would bring you joy this year. Big or small. Write them down. And then tell someone in your life. Tell that person who can help you reach that particular goal, and ask them to help you get there.

If you’re struggling to get started, get inspired by this great site from Lezza Gibbons, Leeza’s Care Connection. There are some basic tips to “breathe, believe, and receive,” that may get your mind in the right place.

That’s it. Do it for you. And then send me a note about what you wanted to do, how you did it, and how you feel when you do.

Let’s celebrate YOU.

Laughter in Caregiving

As it turns out, caregiving can be quite hilarious at times. We have days when we get to laugh out loud at the sweet or ridiculous moments that sprinkle throughout the day. And each day is different; yesterday, for example, my dad had a really bad day and there was nothing to laugh about…but today he’s been a total goofball.

AgingCare.com has some great stories that people have shared that can help lighten your day. Read these when your day may not be so full of fun.

LAUGH

Claim 10 Minutes Each Day

Caregiver wellness matters more than most other things. Laughter is one step toward wellness, but healthy food, exercise, and time to yourself doing what you want to do is essential. We have to be creative here, because many of you right now are thinking, “yeah, right. If I had time to eat well, exercise, and do enjoyable things… everything would be ok.” So let’s make it so. No more excuses.

Let’s start simple. Take 10 minutes for yourself every single day. Find peace, serenity and joy in those 10 minutes. Reset.

How do we start?

  • Identify the challenge to finding 10 minutes in each day. The best way to solve a problem is to really understand the root of the problem (in this case, time).
  • Call a friend or family member and ask him or her to brainstorm with you on ways to find these 10 minutes for you every single day. Some ideas: Can you get up a little earlier than your loved one like my mom does? Can you find an activity that entertains your loved one for 10 minutes? Can you recruit help from another friend or family member to sit with your loved one so you can escape for the necessary time?
  • Write down your plan of action and keep a record of your 10 minutes of wellness every day for 21 days (a simple sheet of paper with the day and a check mark when you follow through will do). This will help you build a habit and make it a part of your life. Once you nail 10 minutes, start to add 2 minutes to it each week until you have an hour that is YOURS.

Then the question is, when you find that 10 minutes, how do YOU best restore your energy? If it were me, I would do a few yoga poses and some breathing.  Others may want to simply sit and enjoy a cup of coffee. Perhaps read a chapter in a book. Have some ideas so that you don’t waste any of your precious time when you get it. And no chores or errands! This is just for YOU.