As our population ages and the number of people diagnosed with Alzheimer’s Disease or other form of Dementia explodes, the number of people touched by the disease is increasing every day. In 2017, more than 5 million Americans were living with Alzheimer’s and more than 15 million caregivers were providing unpaid care for a family member or friend. One in three people over the age of 65 will be diagnosed will Alzheimer’s this year. If your family hasn’t been touched by it yet, chances are you know someone who has.
It is hard to express how devastatingly hard it is to support a loved one who is slowly slipping away from this disease, and both the amount and quality of support the caregiver receives is critical. This article is for anyone who has a friend or loved one who is caring for someone with Alzheimer’s or Dementia. It’s a great BIG list of Do’s and Don’ts that will help you support the caregiver in your life.
Do continue to reach out to me – I can’t always drop everything to talk on the phone but send me a card to let me know you’re thinking of me, or send me a letter or email that I can read and enjoy when I have time.
Don’t be offended if I have to cancel our lunch date or can’t come to your birthday party – please understand that my day changes moment to moment and even if I’ve arranged for someone else to sit with my husband for a couple hours, if he’s having a bad afternoon I’m not going to want to leave him.
Do reminisce with me – As a caregiver, I’m always putting someone else before me and sometimes I feel like I’m forgetting who I am or losing parts of me. Tell me stories about a special or funny time we shared before I became a caregiver. Understand that I spend all of my time with someone who doesn’t remember those days, so you are one of the few who can help me remember who I am.
Don’t tell me about the latest miracle cure, research, or study about Alzheimer’s – I hate this disease, but I need to stay focused on my loved one and caring for them in this moment. I hope there really is a cure or treatment that will help people in the future but that isn’t relevant to our situation today and I prefer to focus on what I can do now.
Do let me know if you think I’m doing a good job – try to understand that most days I feel like I’m failing or just barely coping and the person I’m with all day doesn’t notice my efforts and isn’t able to communicate their appreciation.
Don’t feel pity for me – The path I’m on is a long and hard one, and I may even vent about my troubles, but the love I feel for my loved one hasn’t changed and in my heart I know that I am blessed to have the opportunity to care for them. So don’t say “I’m so sorry you’re going through this”, instead tell me how proud you are of me, or how inspiring my devotion is.
Do listen to me when we are together – Turn off your phone if possible and actively listen to me. I don’t have anyone at home to confide in so when we are together I might need to share some personal stuff, and it would be so much easier if I didn’t feel like I was burdening you.
Don’t be afraid of saying the wrong thing – Sometimes I don’t even know what the right thing to say is! If you are coming from a place of caring and support, that’s what matters to me. You don’t need to be an expert you just need to be a friend.
Don’t avoid my loved one because you don’t like seeing him that way – I don’t like seeing him that way either but he’s still alive and still needs friendly support. If it helps, plan ahead for your visit, think about a topic you can talk about even if he won’t have a lot to contribute to the conversation. Offer to take them for a short drive or walk, they don’t get out much anymore.
Do keep your visits short – Whether you are visiting me or my loved one, understand that we are often exhausted and that attention spans are shortened and moods can and do change rather fast sometimes.
Visiting for 45 minutes twice a week is going to mean so much more to us than if you came once a week for 3 hours.
Do offer to help with practical things like picking up a few grocery needs or dropping off a home cooked meal. Instead of inviting me out to lunch, offer to bring lunch to me. Instead of asking me if I want to go out to a movie, send me the latest dvd release to watch when I have the time.
Don’t judge me or tell me what I should be doing – every moment I’m not actively doing something for the person with Dementia, is usually spent thinking about what I can or should be doing, or feeling guilty for not being “enough”. If you sense or hear that I’m having difficulty with something, ask me if I want to talk about it or offer to help brain storm for a solution, but never say. “You need to be….” or “You shouldn’t be…”. I beat myself up enough and don’t need to feel judged.
Don’t make vague offers to help – when people say “let me know if there’s anything I can do”, we often can’t think of anything, or we aren’t sure what you’re comfortable doing.
Do think of specific things you are willing to help with – Instead of hearing that you spent your day at the laundromat washing your large blankets, I would have loved to get a call saying I’m going to do mine, can I stop by and pick up yours? If you know we are going to be out at a doctor’s appointment, offer to come over and vacuum, do laundry, or put up the damn Christmas tree!
Do offer to update others – if I’ve reached out to you to give you an update on my loved one’s health or results from the latest doctor appointment, offer to notify others in our circle. It is very time consuming and draining to have to call or email everyone and respond to their replies.
Don’t share horror stories you’ve heard – If I’m thinking about moving my loved one into a care facility please don’t tell me how awful this or that one is, or how your coworker’s mother just had a horrible fall because the nursing care weren’t there to help her get to the washroom. Please understand how emotional and hard this decision is, and your stories will either scare me or make me feel guilty. I also don’t want to hear about your Uncle Jim who had Alzheimer’s and how he started to become violent. These are the fears that keep me awake at night and I’m trying so hard to stay positive and in the moment.
Don’t exclude me from events or get togethers just because I’ve had to decline in the past. I need to feel that I am still important to you, and who knows, maybe this time I’ll actually be able to come and your invite will become my escape.