Welcome back! Last week, we talked about breaking up with friends. If you missed this blog and would like to catch up, please click HERE.
This week was a tough one for our family. My husband’s mom took her last breath on this earth, which was hard enough when you consider his parents had been married 67 years, but what made it more difficult was that his dad is experiencing dementia, and couldn’t retain the information that she wasn’t going to pull through.
Every 30 minutes, it was and still is, brand new information for him, devastating him over and over and over. He no longer remembers my name, but refers to me as “his (David’s) wife”. It burns. It hurts. And it is what it is. The sands of time have taken my father-in-law from us.
My guess is we are not the only family to have experienced this kind of trauma, and it is indeed traumatic for everyone involved, the facility staff included. I saw something on a friend’s social media post the other day, and I thought it was worthy of a reprint.
A book recommendation
Before we get too far into this week’s blog, I would also like to recommend a book a friend of mine wrote on the topic, called, “Coping with Dementia”, by Rosemary DeCuir-McKown. It gives you a step-by-step walkthrough of how to deal with the entire event, from coping with sibling rivalry over your loved ones’ care to finding support for yourself and your loved one, to actual placement and what to look for when this time comes. It takes the guessing out of the equation and gives you some peace of mind that you are indeed doing “the right thing”. You can access her information by clicking HERE.
A point-by-point guide to dementia
The following comes from social media but no one person was credited with being the author. If you know who the author is, please reach out and they will be credited on this page. I have added my own thoughts underneath each point, but the points themselves (1 through 21) are not mine.
1. If I get dementia, I want my friends and family to embrace my reality
Instead of attempting to draw your loved one into your world, attempt to join them in theirs. Love their world just as you love them, unconditionally.
2. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
There is no need to “reality check” someone with dementia. You wouldn’t believe me if I told you that you aren’t really reading this blog right now, would you? They won’t believe you when you tell them their loved one has passed, and even if they do believe you at that moment, it won’t take long for them to drift back to their happy place once again.
3. If I get dementia, don’t argue with me about what is true.
Your truth and my truth are rarely going to be the same. So goes it with someone experiencing dementia. It’s not important to be “right”. Allow them to experience your grace, and step aside from your ego.
4. If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
The key point here is truly “don’t take it personally”. It’s not personal. If your loved one gets cancer, you would never assume they are doing so just to upset you, and diseases of the mind are no different.
5. If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
Self-determination is so important. Being independent is what makes us who we are, especially with an elder heart (although even children get dementia). Allow them to do as much for themselves as they possibly can. Leave their dignity intact.
6. If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
Just be there. Be a shoulder to cry on or simply talk to. Saying things like, “I’m sorry you are so sad, but I’m here for you…I hope that helps you even just a little bit”, will go a long way in validating their feelings.
7. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
Speak to them the way you’ve always communicated in their presence. Don’t raise your voice (unless they are truly hard of hearing), or talk baby talk to them. Don’t scold them or make them feel like they aren’t in control of their own body or environment. “Mom, eat your peas, they’re good for you” isn’t something that mom needs to hear. “Mom, did you want to finish your peas?” may be just enough to prompt her to remember she was eating peas and to finish them.
8. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
Staying as active as the body and mind allow is so important. “Sit and be fit” is a great program online to use for exercise. Bring them their favorite genre of music to listen to if they can no longer read a chapter book, and offer to transport them to friends if necessary.
9. If I get dementia, ask me to tell you a story from my past.
Often, when the short memory no longer works, long-term memory is still mostly intact. Elder hearts love reminiscing about the past, and even though you’ve heard the same story 100 times, try and listen again with the same enthusiasm. Ask new questions if you want to hear a new story.
Keep in mind, that your attitude about this is everything. You listen to the same songs from your youth over and over again. You watch reruns of your favorite shows. Your loved one is retelling their favorite experiences, and it helps if you listen with the same interest you would if you were hearing your favorite song again. Lean into the story…absorb yourself in it…and remember, they won’t always be alive to tell it.
10. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
Often, when one has dementia, this can be accompanied by a poverty of speech. The words needed to describe the situation simply don’t exist any longer. Look for signs of pain, such as a squinting of the eyebrows, clenching of the fists, pulling their legs up to their chest while laying in bed, or rolling their head from side to side. It may be something simple like their adult depends are pinching them, or the light in the room is too bright. Are people talking too loudly around them? Discussing a topic they don’t want to hear? The possibilities are truly endless. Be a good detective and advocate for your loved one.
11. If I get dementia, treat me the way that you would want to be treated.
This one can be complicated. In order to love others, we need to love ourselves first. Many of us struggle to love ourselves, and we can only give from an emotional tank that was full, to begin with. If you allow others to disrespect you, then you may think it’s ok to disrespect others.
With all that said, I would recommend you treat the person in question with dignity and respect, love and compassion, empathy and kindness, and I truly hope you would expect others to treat you this way as well.
12. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
Along with having snacks available, be sure and have them in easy-to-open containers. People with dementia have a short attention span, and if they can’t get it open on the first or second try, they will often abort the mission altogether. Leaving loved ones notes that say, “Are you hungry? Check the snack drawer” can help them remember to think about eating.
Be sure to have their number one weakness available in case of an emotional emergency. When they are throwing stuffed animals at you in an angry outburst, being able to say, “I’m going to have some chocolate ice cream. Would you like some too?” can save your biscuits.
13. If I get dementia, don’t talk about me as if I’m not in the room.
This is my number one pet peeve. Don’t talk around the person. They can hear you. Even if they are going to forget what you said in 30 seconds, for that 30 seconds their feelings can hurt just like yours if someone were to say something about you that was unkind or unfavorable.
14. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
This is the number one thing I want people to hear. It’s ok to get help. In fact, it’s often SAFEST to get help. Folks with dementia do really, really well with a stable routine, and facilities often can provide this. You aren’t abandoning them, you are enriching them. They can make new friends, try new things, and find comfort in a regular routine day in and day out.
15. If I get dementia, and I live in a dementia care community, please visit me often.
Please visit as much as you can comfortably do so. Not every relationship was a good one, and if it’s painful for either of you to see each other, it’s also ok to let that go. I would like you to know, that as people grow into their dementia, they often experience a change in personality. If this person is your parent, those who were angry and abusive during your growing-up years will go one of two ways. They will either get grumpier and more abusive, or they will become playful and fun. You may get a chance to see a side of them you always wanted to see but never had the opportunity to experience. Don’t rob yourself of this time with them because you can’t let go of old hurts. Those old hurts may just find some healing in this new interaction.
16. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
It’s really tough when someone can no longer remember things you deem important, like your own name, for example. Keep in mind that again, this isn’t personal. Understand that if it’s frustrating for you, then they must really be upset and confused.
17. If I get dementia, make sure I always have my favorite music playing within earshot.
If you’ve never looked into the benefits that music has on dementia, you should Google it. There have been some amazing things that have happened once those earphones go on the person’s head and the music starts to play. Many will go back to their old personality, memory, and all, while the music plays in their ears. It’s so fun to watch.
18. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.
Keeping things in a reliable place helps them find them again when they look for them. They may not remember where they left them, but they will remember where they were supposed to be in the first place.
19. If I get dementia, don’t exclude me from parties and family gatherings.
It’s ok to let people know ahead of time that your loved one is coming and alert them to their condition. It could feel shocking to someone to not know ahead of time that they may have been forgotten by the sands of time, so it’s best to let them know so that they can prepare. Even if the person can’t remember names, they can still feel loved and wanted, and that’s something, now isn’t it?
20. If I get dementia, know that I still like receiving hugs or handshakes.
Touch them, hug them, play with their hair, and rub their backs in a comforting way. If they ask you not to, then just stop. Ask them ahead of time, “Can I offer you a hug?” and see where they stand on that type of interaction. Most of the time, they will say yes, or “I don’t know”. Go ahead and do it. Just remember that no means no. Huggers in their youth don’t equal huggers in old age, but quite the opposite can also be true. You don’t know unless you ask.
21. If I get dementia, remember that I am still the person you know and love.
They are still in there. They are still your loved ones. Nobody gets out of this life unscathed, and this is their time to receive understanding and kindness. They won’t be here forever, and you will never regret being a good person. You can’t go wrong.
A note of thanks to the caregivers
My last comment is for the caregivers out there. Take care of YOU. You cannot take care of others if you aren’t taking care of yourself. Please. You are so important and you deserve to rest, rejuvenate, and heal in between your caregiving times. And thank you for what you do. The world needs you.
As always, this blog is not a replacement for sound medical advice. I am not a doctor. Please make an appointment to see your healthcare provider and put a good plan in place that works for you and the needs of your body.
That’s all I have for you this week, dear reader. I’ll see you back here next Wednesday to share another cup of coffee. Until then, be good to yourself and each other.
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Thank you for this- my mom had dementia and lived with us last two years of her life. Will never forget when she thanked me for handing her a basket of clothespins – such a cruel disease! 😢
I walk this path now with my husband. Too many people do not realize the agony of this disease-some will be in the process of dying for as long as 20 years, as they lose a bit more everyday. My husband was outgoing, social, had a wonderful sense of humor, and a great sense of humor. Most of that is now gone. I’m heartbroken as I watch him decline. The whole of our society/govt/and Healthcare system really have failed when it comes to treating the patient AND the family. This is a topic for a blog for sure, because caregivers/family are often forgotten and ignored, but this journey is not one taken alone and impacts the caregivers health. It’s one of the most isolating illnesses you can experience and seems endless. I often cry alone late at night when I am alone, mourning not only the diseases toll, but the sacrifice of my own life. On another note, Teepa Snow has been a wonderful resource. I would also suggest the book “The 36-Hour Day” by Nancy Mace & Peter Rabins.
Another amazing resource – Teepa Snow.
She has videos on YouTube as well. Took class from her when she was in Portland. She would slide into one type to different types of dementia without us realizing what was happening. Love her!!
Thank you Linda for this wonderful blog. It has indeed been a difficult week.
This was a great read and informative. Thank you!