Tag: consent

“Mom remembers dad, but she also has a new boyfriend.”

Anonymous writes: My mother has been in a memory care center for 2-½ years. She has recently started kissing a fellow resident even though she still recognizes my dad when he comes to visit. Most recently, she has now been found in this other man’s bed twice. My dad and my sister are using humor to deal with the situation but I am heartbroken. I do realize that it is the disease and not my mom making these choices. How do you deal with these situations? The first, and most important thing that we need to deal with is the issue of CONSENT. Consent is a really challenging thing to measure when people have dementia. Honestly, due to the fact that we don’t know exactly what is going on in the brain of someone with dementia (does she think that he is her husband?, etc.) all we can ask ourselves is this: does she seem happy and willing to consent? Does the man in this relationship seem happy and willing to engage with this woman? If the answer is, “Yes, both parties seem happy,” then we can generally agree that the relationship is consensual. Once we get that difficult topic out of the way, we can deal with our own feelings regarding mom’s relationship with a new man. First—and, honestly, most importantly—mom is an adult. Mom can do what she wishes. We might not like it, but she has lived a full life, and she has learned a lot about herself and about relationships. If mom wants to have a relationship with someone, we have to let her do it. Secondly, I think your dad and sister in this situation are handling everything really well. They are using humor to deal with it, and I really think that this is the best way to look at mom’s new relationship. Third, we are not ever going to know exactly what is going on in mom’s head. Just because she recognizes dad, doesn’t mean that she doesn’t also think that this other man is dad, as well. Maybe she just likes this guy. Maybe she thinks he’s another version of her husband. The point is, we don’t know for sure, but we do know that she likes this man. While relationships in dementia can be very complicated, the only two things that we need to worry about are consent and our response to the relationship. That is all we can control, and all we should try to control. I have seen some truly beautiful relationships develop between adults in dementia care communities, and they blossom best when all families and parties are on board.

April 25, 2021

“But he said he wants to live alone” and other problematic dementia care statements

How often I have heard family caregivers say, “But my ___ told me to never move them out of their house.” People who, now, have dementia, told their loved ones things before their dementia got bad. “My Mom told me to never move her to assisted living.” “My husband said that I need to let him continue living at home.” I attended a wedding recently, and found out that one of the other attendees had early-onset (“younger-onset”) Alzheimer’s disease. I immediately went into what I call “dementia mode,” which is where I start providing care to someone with dementia even if it is not my original job. Truly, I can’t help it, I just feel a pull to people with dementia. As I spoke to this man, I quietly assessed him in my own mind. He was in an early-moderate, maybe moderate on a bad day, stage of Alzheimer’s. Another woman at the wedding told me about his situation. “He lives at home, but he has a few caregivers who see him three times a week,” she said. “Just three times?” I asked, sighing. “What does he do the rest of the time?” I asked, even though I knew what her answer would be. “He’s home alone,” she responded. “He said, before his Alzheimer’s had gotten bad, that he’d wanted to stay at home and take care of himself as much as possible.” “That’s not good,” I said. “He needs 24-hour care in his stage of dementia.” “But he said that he wanted to take care of himself!” she shook her head. “He said that before he got Alzheimer’s!” I always grit my teeth when I hear these lines. The problem is two-fold: 1. Your loved one had no idea how much care they’d actually need, and wouldn’t have given you an ultimatum like that if they’d known. They would’ve said, “Find me great care but also take care of yourself.” 2. Consent becomes a big problem. Even if someone said, while cognitively healthy, that they wanted to live alone, their ability to consent to continue living alone changes in dementia. They can no longer consent to things like this because they can no longer make healthy and safe choices regarding their own healthcare. It is no longer an option for someone with dementia to make choices for themselves (before or during the disease process) once their dementia progresses. This man needs 24-hour care, and, sadly, something he told his family years earlier is shaping his care situation. If you’re in the UK, check out this article on AgeSpace about Attendance Allowance and how it can help you!

October 30, 2017

“Mom remembers dad, but has a new boyfriend.”

Anonymous writes: My mother has been in a memory care center for 2-½ years. She has recently started kissing a fellow resident even though she still recognizes my dad when he comes to visit. Most recently, she has now been found in this other man’s bed twice. My dad and my sister are using humor to deal with the situation but I am heartbroken. I do realize that it is the disease and not my mom making these choices. How do you deal with these situations? A reader wrote in and asked me this question last week, and I answered it quickly, but wanted to go into more detail in a full blog post.  The first, and most important thing that we need to deal with is the issue of CONSENT. Consent is a really challenging thing to measure when people have dementia. Honestly, due to the fact that we don’t know exactly what is going on in the brain of someone with dementia (does she think that he is her husband?, etc.) all we can ask ourselves is this: does she seem happy and willing to consent? Does the man in this relationship seem happy and willing to engage with this woman? If the answer is, “Yes, both parties seem happy,” then we can agree that the relationship is consensual.  Once we get that difficult topic out of the way, we can deal with our own feelings regarding mom’s relationship with a new man.  First—and, honestly, most importantly—mom is an adult. Mom can do whatever she wants. We might not like it, but she has lived a full life, and she has learned a lot about herself and about relationships. If mom wants to have a relationship with someone, we have to let her do it. Secondly, I think the “dad and sister” in this situation are handling everything really well. They are using humor to deal with it, and I really think that this is the best way to look at mom’s new relationship.  Thirdly, we are not ever going to know exactly what is going on in mom’s head. Just because she recognizes dad, doesn’t mean that she doesn’t also think that this other man is dad, as well. Maybe she just likes this guy. Maybe she thinks he’s another version of her husband. Who knows. The point is, we don’t know for sure, but we do know that she likes this man. While relationships in dementia can be very complicated, the only two things that we need to worry about are consent and our response to the relationship. That is all we can control, and all we should try to control. I have seen some truly beautiful relationships develop between adults in dementia care communities, and they blossom best when all families and parties are on board.

August 28, 2017

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