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
Embrace 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.
Under 40 Online Group – through Hilarity for Charity
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:
Phoenix area: https://www.alz.org/care/alzheimers-dementia-support-groups.asp
Under 40 online: http://www.hilarityforcharity.org/#!get-involved/c1eju