I visited my Grandbetty’s old house last week and it brought back a flood of memories (no pun intended). I wrote a blog about my Grandbetty after Alzheimer’s, but most of my memories are of her before. When she knew my name. When she wanted to take a thousand pictures of me by her azalea bushes. When she wanted to feed me, even when I wasn’t hungry. I was with her when she died. I sat with her several times a week for the two years she didn’t know me anymore. She was still the same person, just confused. Sometimes, she would get angry. Not often, but sometimes. If she got angry with me, I would leave the room and collect myself. I wasn’t mad at her, but I was hurt. It didn’t matter that she didn’t know what she was saying. Words hurt. I had to cry a little and then I had to come back-because this was the only time in her entire life when she REALLY needed me.
I’m not sure how many people reading this know that I am (was) also a nurse in a dementia unit. I’ve seen families come in, get angry or sad, and leave-never to come back again. I’ve heard the family members that do come complain about the ones who don’t. One daughter would come every day. The other one “just couldn’t handle it”. I guess what I’m trying to say is, I am one of the few people who are able to see both sides. The side of the staff and the side of the family-the ones who visit and who don’t.
It is incredibly frustrating when a family member calls to check on their loved one, but doesn’t visit. They would vent to me. “I just can’t.” “She doesn’t know me anymore.” “It really doesn’t matter if I come. She’ll never know.” “How is she?”
I get it. I get the emotions. I get the denial and the pain. I do. I promise. I’ve been there. It is hard. HARD. But, if I could give these people real, unsolicited advice, I’d tell them to suck it up. SUCK. IT. UP.
Obviously, this isn’t something staff are encouraged to say to family members. I never would. I might bring up the power of denial, but the truth is that I think if your loved one is confused and afraid and you don’t come see them because “it makes you too sad” or “they don’t remember you anyway”, then you need to take a hard look at yourself. You need to recognize that this isn’t about you. It’s about them.
I’ve seen family members I’ve never met come to sit with their deceased loved ones awaiting the funeral home pick up. I’ve held them as they cried and told me wonderful stories about who they were “before dementia”. I’ve let them know that their loved one went peacefully and comforted them, and I’ve witnessed the guilt they felt when they realized they didn’t have a second chance. How can they be so upset about their passing when they’ve treated them like they’ve already died? They obviously care or they wouldn’t be here, holding the hand of the body they loved. They’re obviously hurting.
I learned through these sad occasions that it isn’t my place to judge these people. It is difficult not to, but when I see how painful the death is to them I realize that they DID love them. They loved them very, very much, but there is a very selfish part of them that took over when they just “can’t even” anymore. So, instead of telling everyone that if you don’t visit and take care of your loved one, you’re incredibly selfish, I’ll just tell you why you need to do it. Even if it makes you sad. Even if you’re uncomfortable. Even if you get your feelings hurt.
The guilt- They’re going to die. It is going to happen. If you visited this person before they got confused, you should visit them just as often afterwards. The guilt after they’re gone will consume you and you won’t get a second chance. Death is final.
They probably know you even if you think they don’t- My grandmother introduced me to people as her friend Martha. Martha was her BFF growing up so I took that as a compliment. She might not have been able to verbalize my name or even our relationship, but she knew me-and she knew she knew me. (Say that five times fast) She loved me to her last breath.
The ones who do visit need your support-Let us not forget the ones who bear the biggest burdens. Those who visit their loved ones daily because there is no one else to help out. Those who know all the details of their family or friend’s medication changes and eating habits because they are all alone. The hardship these people who do it all without any back up is written on their tired faces. These people need someone to come sit. They need someone else to go through this with. It is too much for one person to bear. Staff becomes their family and their actual family never comes. These people deserve your support, and these people will not forget that you didn’t give it to them.
They need you-To me, the point of any loving relationship, whether friend or family, is having someone there when you need them-and being there when they need you. Let’s say your loved one’s house burns down. Would you help them rebuild? Would you offer them a place to stay? Would you organize a donation system for them? If the answer is “OF COURSE I WOULD”, than this is no different. They need you. Even if you just sit in the room with them in total silence, that’s okay. They just need you to be there.
You need them-Believe it or not, one reason it’s too hard for you to come visit is because you NEED them. You need who they used to be. Whatever role they played in your life is now unfulfilled, but you know what? They’re still here. You can still touch them. You can still talk to them and listen to them breathe. Please, see them while you can. It isn’t just good for them. It is good for YOU. You will get to know this new version of them and you will love them just as much.
I hope this isn’t taken as a rant. I am writing this because there are thousands of people everywhere who are avoiding their confused loved ones because of many reasons, but I am here to tell you that you can change. You can decide to go back. You can go and sit with them in silence. Bring them a milkshake. Hold their hand. It might be awkward at first, but don’t let the uncomfortableness of the situation keep you from being there when your loved one needs you most. When they do pass, your soul will feel light as you know you did all you could. Sadness is inevitable, but guilt doesn’t have to be.
If you’d like to read my follow up post about HOW to visit your confused loved one, please click here.