Tag: family

When a relative doesn’t “get it” that a loved one has dementia

Are you enjoying my blog posts? Grab a free download of one chapter from my audiobook here and also receive any future helpful tips and posts right to your inbox! Let’s pretend you have four siblings. You and three of your siblings understand that mom has dementia. You get it: you have been changing the way that you speak to her. You’ve been adjusting her care accordingly. You’ve been teaching dad about Embracing Her Reality and how to avoid an argument. You guys have been kicking butt with keeping everything positive.  Aaaaaaand, then there’s your one brother. He’s not on board. In fact, he’s way off-board. He’s mad, he’s confused, he’s frustrated, and every time he comes into town he yells at mom, makes lists and charts for her, and demands that everyone start following his lead. “Mom is just a little forgetful!” he yells at you and your siblings. “We have to REMIND her that her dog died! Every time she asks, we need to remind her that the dog is dead.” For nearly every family of care partners I meet, there’s ONE person who just. doesn’t. get. it.  And this is hard on everyone else, because here’s the problem: he may never “get it.” You can hit him with all the education in the world. I often jokingly say to families who ask me about a relative like this, “Send him a copy of my book!” but I do mean it as a joke, because, in all truth, I know this guy isn’t going to read it.  Dementia care is really hard. It’s tough to teach because there’s never a one-size-fits-all answer to a lot of questions. So here’s my advice for dealing with that one relative who just doesn’t get it: do your best, and lead by example. When I teach, I find that stories and examples work best.  You can only do your best. That’s it. If he’s open to information, that’s great: maybe he’ll check out my blog or another resource on positive dementia care and learn something. But if he’s not? All you can do is press forward, and, hopefully, avoid his counsel when it comes to big care decisions. 

November 12, 2018

“Her memory is terrible, but she doesn’t have dementia” and other statements by people in denial

“Well, mom probably forgot to call you back. I told her to do it, but her memory is just terrible,” Megan’s daughter said. “She doesn’t have dementia, though.” What! Of COURSE mom has dementia. This was later confirmed when I met Megan and found that, indeed, her memory and decision-making skills were quite lacking. She was very sweet and conversational, but she didn’t even know what year it was. The worst part? Megan was home all day by herself. This is the problem with family members who are in denial of their loved ones’ conditions: the person with dementia ends up getting the short end of the stick. They don’t get the care they need because the family thinks that “mom seems fine, just a little forgetful.” Mom isn’t fine. She has dementia. NOTE: This article is not for people who have dementia. We never want to try and “convince” someone with dementia that they have dementia. This is for the family. I often find that, when I talk to people in denial, they have a few things in common: They have “the blinders on” for their loved one’s condition: they don’t see it, or claim that it’s much less severe than it actually is. They suggest that their loved one can still live alone and do all the things they used to do, even if they’ve noticed a large change in that person’s condition. They go to a family doctor that they’ve gone to for years who has told them that their loved one “seems fine,” even though the doctor hasn’t spent more than 10 minutes with that individual.  The loved one with dementia has shown some serious red flags, such as forgetting appointments, arguing about unreal things, getting lost while driving, or becoming paranoid, which the family ignores. They have multiple family members who all have extremely different opinions about the person with dementia and how severe the dementia is or is not. How do you communicate with someone who is in denial? For example, you KNOW that mom has dementia, but your sister thinks that mom is fine and you’re being dramatic. Here are 3 tips: Call in an expert to be the interpreter. Find a reliable neurologist, geriatrician, or even give me a call! Your diagnosis may not mean a lot to your sister, but an expert’s explanation could make the difference. Use examples: over time, your mom has shown serious changes in her condition. Point these out and compare them with how she used to be. Encourage your sister to read up on dementia care. If she isn’t a reader, send her to my YouTube site! Denial of a loved one’s dementia can have serious consequences. 

July 12, 2018

“My [insert loved one here] isn’t like these people.”

“She doesn’t need to move to a care community yet.” “He’s not like these people.” “Her memory isn’t that bad.” “He only got lost the one time.” If you’re telling yourself these things, it’s probably time to move your loved one to a care community. Here’s the bottom line: your loved one cannot make a safe decision for themselves any longer. Even though your loved one told you years ago that he or she “never wanted to be moved into a ‘home’”, it doesn’t let you off the hook! Your loved one, at some point, is not capable of making a safe decision for themselves. Is she leaving the stove on? Is he getting lost in a familiar neighborhood? It’s past time to make a plan: you need to start acting on a plan immediately. Be it bringing in a home care agency for 24-hour care, or considering a local care community, a decision must be made soon. There are about a million reasons that you may be considering a care community move for your loved one.  Let’s review some of them that may be affecting you or your family: Behavioral challenges – Your loved one is behaving in odd or unpredictable ways, and keeping him or her at home just isn’t working well anymore You’ve tried other options – You’ve tried home care and day care, but it looks like your loved one is starting to progress to a level where he or she may need 24-hour assistance  Environmental challenges – Your house isn’t equipped for taking care of a loved one at home, or maybe one of you lives in another state Engaging care – Your loved one needs more than they are getting wherever they are. Perhaps they could benefit from socializing, but you’re still too afraid to “move them.” There are a lot of different types of care options, but it’s up to YOU to pick the right one. Not making a decision, just because your loved one “told you that he/she wants to live at home,” is not an option.

April 26, 2017

What’s the right time to ask for help if you're an Alzheimer's caregiver?

A guest post by Zara Lewis In my wonderful family, we all love and support each other; however, as it often happens, most of the important tasks are entrusted to a woman, in this case – me. My mother-in-law is at the end-stage of Alzheimer’s and I’ve been caring for her (with just a little help from my husband) for a decade.  Spending time with her, I’ve been constantly trying to reach past the murkiness of this horrible disease and find at least a glimpse of liveliness in her eyes. But there is nothing, a void, not a single moment of recognition on her face. She is helpless, her imagination is dead.  It’s heartbreaking, every moment of it – and I’ve finally admitted to myself that I can no longer do this alone. You are not a bad person Caregiving is demanding and there’s only so much you can do alone; additionally relying on someone else doesn’t make you selfish, inadequate or egotistical.  While a caregiver may think that sharing the load is giving up on the person they love – no, it is not. There is nothing wrong in asking for help. In fact, no matter who you are, what your financial situation is or what you’ve accomplished – when you’re dealing with a parent (or anyone else you love so much) with Alzheimer’s, the only thing to think about is how to help them. Forget about potential judgment, prejudice, intolerance: focus on the now and all the help you can get. Care together As you (probably) already know, Alzheimer’s is a progressive disease that’s getting worse over time. To a caregiver, ALZ is a highly demanding task which is both emotionally and physically challenging and it often takes up more energy than you have. While your love for the patient may trigger guilt if you are not the only person engaged in “helping”, you need to be realistic: if you are the only one shouldering the load, the quality of the care you provide will be diminished.  To prevent caregiver burnout, especially if you’re the primary caregiver for your loved one, share some of the responsibility with your family.  The right time to reach out for support Most caregivers make the mistake of pushing themselves too hard, to a point of utter exhaustion before they seek help. Do the opposite and share the load with your family early on. That way, you’ll not only be able to provide better help, but you’ll also avoid feeling done in. Don’t water it down It’s hard, awfully hard – so, in asking for help, don’t water down your requests by saying “It’ll be only temporary” or “If it’s not too much to ask”. Keep a list of things you need help with. Tell the family how it is and what all needs to be done. In case no one in the family is in a position to help, turn to a caregiving home for help. We’ve entrusted my mother in law to professionals for home care in San Jose who have massively increased her quality of life and instilled us with peace and tranquility. We still see her almost every day, but the fact that the responsibility is shared and that she’s in the right hands helps me and my husband sleep at night.  Understand that loving and caring for someone with ALZ isn’t your personal battle. Just as the disorder itself consumes its victims’ lives, it also consumes the lives and well-being of the people giving care – unless you ask for help, that is.

February 27, 2017

I'm going home now.

Many of our residents receive visitors on a regular basis. It’s nice to see them interact with daughters, sons, grandchildren, and even spouses. The trouble occurs when family members don’t know how to say goodbye when the visit ends. I’ve watched numerous family members (especially spouses) say to their loved one, “Okay, I’m going home.” I’m going home. While some of our residents recognize that the visitor does indeed have a different home, many do not. Many are unsure why their beloved spouse would “go home” without them. I hate watching the pain in a resident’s eyes as they realize that their husband or wife is going home, to a different home, and that they won’t be able to join. If your loved one is in memory care, please consider their feelings and confusion when telling them that you’re leaving for the day. Why not get them involved in an activity before walking out? Perhaps you could suggest that you need to “run to the store” or that you’re “leaving for a bit” but that you’ll see them again soon. There are numerous happy alternatives to “I’m going home” and none of them have to make you feel as though you’re lying to your loved one. It’s so important to find a way to say goodbye that doesn’t end in tears. 

July 3, 2014

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