How To: Dementia – Preparing Visitors and Hosts

When it comes to individuals with dementia, so many factors in their life and personality change. They can become forgetful, confused, nonverbal, spacey, completely detached…each person is so different. The hardest thing about our mom’s disease is that her entire entity, the person that we all knew and loved, is gone. For the family, this becomes a new reality and we adjust with the transitions. I find that one of the next most difficult things to watch is friends, hers and ours, visit her. For a really long time, it was quite difficult for me to have any friends see my mom the way she is now. I’m very protective of her and it’s painful, for everyone. However, two Christmas’ ago when my childhood best friend, Maggie, came in to say hello on Christmas Eve I was nervous because she hadn’t seen June in a while because she doesn’t live here. Well, June was the first person she greeted and she walked right up to her, gave her a big ass hug and said, “I love you”. Cue to Michelle and me crying. It was my first friend to visit my new mom and it was actually a really beautiful experience.  As lovely as that encounter was, I know not every visit will be as perfect. The truth is, it can be a really hard situation to navigate so that everyone feels okay. I was nervous, but Maggie’s approach was the best way for me to get to the point of letting my friends see my mom, someone they grew up with. To many of our friends growing up, June was kind of like a second mom to them. I don’t know how all illnesses affect relationships and friendships, but I do know that dementia is a real tricky son of a bitch. I know we’re not the only family going through this, so I thought I’d share some tips about visiting a loved one with dementia and for those who are hosting a visit for a friend or relative to visit a loved one with dementia.

For The Visitor

Be prepared. I guess no one is ever really prepared but in a way prepare yourself to meet a new version of your friend or relative. It’ll no doubt be a sad experience, especially on the first visit. However, as time goes by and when you make your visits, you will gradually find your new normal. If the family hasn’t kept you up to date on changes, inquire. You don’t want to walk in thinking you’re going to have a gossip sesh and catch up and come to find that your friend is no longer speaking.

What is your friend/relative into? Gradually, dementia patients lose interest in regular everyday things over time, but sometimes there is something that can still spark up some interest. Adult coloring books, markers, and games are great gifts to bring if you want to partake in a little activity with your friend. Our aunt orders games for June off the Alzheimer’s Organization website. That’s a great place to start your hunt for cool new games for your friend or relative. Walks are also a great way to spend time together. Individuals with dementia truly don’t get out much so fresh air with a friend is on point. If they can still read, children’s books are wonderful for them as well. You can read to your friend or have them read to you with you as a guide. It’s also a way to hear that voice you miss so much.

Go with the flow. Basically, just as you would under regular circumstances, go with the flow of your host. As one doctor said to Michelle, “if mom pulls up a chair in front of the microwave because that is the television in her reality, pull up a chair and join her.” I love that piece of advice. It encompasses all possibilities with honesty and a little bit of humor.

What to bring. Friends often ask what to bring our mom. We are always so grateful for the flowers and gifts friends bring to June. They truly brighten the home and fill it with love. If you are looking to bring a friend or relative something, flowers are such a beautiful gift. As I mentioned, these folks don’t get out as much as healthy humans, so it’s a really lovely way to fill the house with nature and vibrant colors.

Cry it out. Don’t keep that shit in. Whether you need to use the restroom, hug one of the family members, cry alone on your way home, just do it. It’s a very sad journey for your loved one, but the only good news is that they don’t know they’re on it. But we do, so we make up for the tears they can’t release. A good cry is a healthy cry.

Don’t beat yourself up if you can’t bring yourself to visit very often. Listen, everyone deals with this extraordinarily shitty situation differently. Some people can walk right in, like Maggie, and handle it. Some can’t. Believe me, I get it. But if I may be honest, even short visits add such positive energy and so much love. As hard as it may be, it truly helps your loved one. Illness and death are inevitable. With dementia, it happens to take an individual on the least desirable path there is, but they still are human and are living. I believe it’s important to treat them as such.

They are still there. They may be a super different version of them self but it’s still them. They may not be able to talk or remember, but deep down that person and those memories are still there. It’s important to keep that sense of positivity because they can feel that. The other day, June decided she wanted to lay in her bed. We laid there together for about 30minutes. I told her about my day and some funny stories that happened that weekend. She can still recall my name and Anthony’s name, that’s about the extent of her conversing with me, but while I spoke, all eyes were on me. Hearing another human’s voice or a rub on the back is just the transfer of positive energy at this point for dementia patients. Good vibes can go a long way with them.

For The Host

Be ready…for anything. What I mean here, is literally be ready for anything. I would have extra clothes and bathroom needs all set up in the event of a moment. Be ready in the event of a breakdown, all hugs and some tissue should be on deck. Maybe even a bottle of wine. The very first visit of a friend or relative can be difficult, but it’ll all work out. You’ll get the hang of it.

Coloring books and games are key. It’s a good idea to have some sort of activity prepared if your loved one is still capable of doing any. Offering the idea of a walk outside or even just sitting outside with refreshments is a great way to spend time together on a visit.

Go with the flow. Perhaps let your loved one set the tone and pace of the visit. If he or she is cozy on the couch, set up a spot for their friend or relative to also feel comfortable. If they seem antsy or feeling a bit more mobile that day, maybe a walk is in the forecast. Depending who visits Junebug, sometimes it’s a tv veg sesh, maybe some coloring, she’ll let us know by her actions and mood. Once a friend helped go through counting numbers with her, it was incredibly heartwarming.

Cultivate positivity. I like to smudge the shit out of my mom’s house. I burn sage and waif it at her like it’s nobody’s business. I understand this may not be for everyone, so do whatever you need to to get your mind in the right place for the visit. Personally, sometimes I get nervous or anxious that the visitor may feel very sad. It makes me sad. I do what I can to get my noggin and heart prepared and find the positivity in having guests over for mom. Deep breaths, a good cry, vino, some nice candles, some yoga…do what you gotta do.

Prep your visitor. I think it’s really important to do this. An honest heads up will have everyone prepared. If it’s been a while since the friend or family member has seen their loved one with dementia, it will be a really heartbreaking moment for them. A little update on their current status will help soften the blow.

Prep your loved one. Just as I would do if she wasn’t sick, I tell June that so and so is coming for a visit. If she has it in her, I’ll ask her if she knows their last name or any of their children or relatives. I find that even doing some counting and light memory games (days of the week, months of the year) help get her a bit stimulated. I’ll tell you what, she sure gives any guy that walks in the room that beautiful June smile. #flirt

For Both

Find the humor. Here’s the deal. Individuals with dementia do things that a normal person would think is highly questionable, but for them, it’s their normal. Once the initial shock of the illness settles in, try to do what we do, find the humor in it. Listen, if I cried every single time Junebug did something super abnormal, I’d be a fucking mess. Get some laughs in and if you’re lucky, your loved one may just laugh with you. It truly is the best feeling ever. A couple of weeks ago, June did something that I’ll keep private but it was one of those things that all you could do was laugh about it. I started laughing and looked at her and sure enough, she joined in. It felt amazing to have a good laugh with my mama.

Be each other’s support. This is a no-brainer. It’s hard for you both. No shame in having a glass of wine together when your loved one lies down for a nap. Plus, over time, often the loved one’s friend becomes a new friend of your own. Perhaps in there lies a silver lining.

We grew up with a full house, people were coming and going on the regular. Junebug often joked that we ran a frat house because it was always buzzing with people. Some we didn’t even know. Our home always smelled delicious and the front porch was always filled with laughs. We do our best these days to continue that tradition of celebrating our family and friendships in her home. With her new abode and warmer (hopefully) weather on the horizon, we’ll be hanging by June’s once again. Now that I can better accept our new normal, I look forward to these days ahead.

For those in our situation, we get it and we are sending you the most positive vibes ever. If you ever need to chat, TSP is here for you. XO

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