Ask Grassflower Columns

Mom likes to talk. The problem–and it’s been this way for a LO-O-NG time–is that it takes her FOREVER to say anything, she repeats herself and gets mentally lost a lot of the time, and sometimes just kind of forgets where’s she’s going. Dad’s been with her for going on 60 years now, and on a good day, he’ll just finish her sentences. On a worse day, he’ll tell her she’s remembering things wrong. On a really bad day, he’ll just get quietly frustrated and walk into another room to take a nap while she finishes her story. I don’t know how to deal with Dad’s behavior, but I think it’s part of the problem. Doesn’t he realize Mom has Alzheimer’s or some other kind of memory impairment? I can’t believe they’ve let it go this long without doing something. Or maybe he DOES know and doesn’t want to acknowledge it’s real. I don’t know what to do. They’re still living independently, but Dad’s not in good health and I keep worrying about what will happen to Mom when he dies.

Dear Grassflower: I know this is kind of a trivial question, but I visit Dad at his dementia home kind of regularly, and it’s pretty obvious he’s not the guy he used to be. He really doesn’t understand even the most mildly engaging conversation, and we can only talk for so long about the weather. I feel like as his mind fades away, I’m filling the void with nonsense and trivia, and it’s driving me insane. I need something for us to DO! I’m sure I also need a mental adjustment but I don’t know where to start!- Rob K., Maryland

Dear Grassflower: I’m planning this month to move Mom to assisted living. Previously, she and Dad lived in a 1500 sq. ft. house, but the rooms at assisted living are only about 250 sq. ft. She’s already allowed me to clear out some of her stuff in preparation for the move, but I don’t know how I’m going to reduce everything she owns by 6x! Please help!

– Alice B., Nebraska

Dear Grassflower: My question is simple…perhaps too simple, because I have been struggling with every possible angle of it. Should I tell my mom she has Alzheimer’s? She’s in the early stages and was just diagnosed, but didn’t really understand the diagnosis and I’m not sure if or how she’ll accept it. And what if she does know? It’s not going to make things better, and it’s just one more thing she can’t control that she would just worry about. Really looking for some guidance here, thanks.

Dear Grassflower: Mom used to be a private person. But after her dementia diagnosis, she took to loudly badmouthing other races or nationalities, talking about her bowel movements, or something else equally unwelcome. Now, she’s cussing at the dog, telling the great-grands they’re “ugly little trolls” (one cried), and more. I don’t know how to explain to little kids that Mom’s off the reservation, and it breaks my heart that she probably can’t be trusted around anyone. Right now she’s living with my husband and me, but that won’t last, and it’s going to be a s***show when we have to move her to a home. Please help.

Dear Grassflower: Mom used to be a private person. But after her dementia diagnosis, she took to loudly badmouthing other races or nationalities, talking about her bowel movements, or something else equally unwelcome. Now, she’s cussing at the dog, telling the great-grands they’re “ugly little trolls” (one cried), and more. I don’t know how to explain to little kids that Mom’s off the reservation, and it breaks my heart that she probably can’t be trusted around anyone. Right now she’s living with my husband and me, but that won’t last, and it’s going to be a s***show when we have to move her to a home. Please help.

Dear Grassflower: Dad has dementia and often says or does embarrassing things in public. Since I can’t take him out to eat any more, our outings have been to places like Sonic and McDonald’s. The problem is, now he won’t eat anything else. I’ve tried ordering pick-up from places like Applebee’s or Chinese take-out, but all Dad wants is tater tots and ice cream. I feel like he’s not getting enough nutrition, but if I order something that’s actually good for him, he won’t eat it. What should I do?

Dear Grassflower: It’s been a year since Dad passed away and Mom was diagnosed with dementia…and I don’t think my sibs have processed it. My sister wants to do a big family gathering and has gotten all wrapped up in the symbolism of it being the first get-together since Dad died. As Mom’s caregiver, I can tell you she hates noise and crowds. She gets tired, confused, and generally doesn’t enjoy these big to-dos, and I can’t seem to get my sister to understand that. I don’t want to have to be blunt with her, but I will if I have to. Thoughts?

TLDR: Mom or Dad is dressing (or not) bizarrely, and it make him, her, or somebody else really uncomfortable.

I’ve gotten a lot of questions lately about clothes. For instance, Mom wears the same outfit for weeks until she smells like a homeless person. Dad walks around in public in nothing but his undershorts. Your husband won’t take off what he was wearing last week when he puts on a new outfit and now looks like a polar explorer. Your wife has her bra on the outside and/or backwards. Here’s some general advice about what’s going on and what to do about it.

On the best days, taking care of Mom or Dad is a blessing. You get more time with them to see them as an adult and appreciate them for the sometimes messed-up human being they are. And sometimes, if you’re honest with yourself, the psychological burden of care can bend your own life out of shape and be harmful to others. You probably don’t even notice when it’s happening.

Here are some warning signs.

After the last kids moved out, Mom and Dad have rented out the spare bedrooms along the lines of AirB&B. Recently, though, they were approached by a young woman who said she wanted to escape an abusive husband. She pays rent, but it’s a new crisis every week, often costing more than the rent. Dad’s a softie for sad stories, so he’s bought her groceries, blankets, and so on. Last week she asked Dad for $600 for car repairs. After he hesitated, I saw her lifting Dad’s credit card while he took a nap. Dad’s getting drained of cash, and it’s got to be a few thousand dollars by now. My folks are easy prey, and I’m trying to figure out how to stop the grifting. Please help.

Mom’s faith has always been important to her; and until now, it’s been her one chance to get out and go somewhere she loves. But lately, she behaves inappropriately–loud talking, singing the wrong hymn, or just not making sense. She’s been asked to leave the service because her behavior is disruptive. It upsets her to get “thrown out”, and she often gets obsessed with some point raised in the sermon and won’t let go of it. Last Sunday, the preacher said “the Son of Man is coming at an hour you do not expect,” and Mom spent the whole afternoon trying to “get the house ready for him.” This can’t go on. What should I do?

Dad’s been in dementia care for 6 years. He’s still able to talk—mostly, so I can tell how he feels. And lately, he’s been…clingy. When I tell him I have to leave, he makes up a reason to stay, or he insists he should go with me. We repeat this ritual every visit, and it often takes me an hour and a half before I can actually get out the door. By then, it’s late, I’m exhausted, and I feel like I don’t have time to unwind. I know Dad won’t be around much longer, which makes me feel horrible for telling him I have to go. I’m having trouble drawing the line between what’s good for Dad and what’s mentally healthy for me. Thoughts?

Three weeks ago my husband and I moved my Dad to dementia care. He was lost and confused when we pulled up outside and a nurse helped him out of the car, but I think at some level he knew he wasn’t going home. I felt like a horrible person when we drove away to sort through the house and figure out what to keep or sell. I wanted to cry. I feel like all the little “therapeutic lies” we told him to get him to agree to the move were hardly worth the pain and guilt. I feel like a horrible traitor to everything Dad stood for. I keep telling myself, “at least he is safe now”, but it feels empty. Now we’re planning a visit and I don’t know what to say or do.

Mom was diagnosed with dementia about four months ago after it was clear she couldn’t continue living at home. Miracle of miracles, my husband and I managed to get her moved to our house without too much trouble. We told her we wanted her to visit us for a while and she settled in nicely. But now, all of a sudden, she’s been talking about wanting to “go home.” I’m not sure if this is just a phase, but she’s been persistent about it for the last few days and I’m wondering if there’s something I should be doing. Any thoughts?

Mom’s declining mentally but has managed so far to continue living at home. She accepted my help with finances. But when I’ve asked her to let me hire a maid or yard service, she says it’s too expensive or “I don’t need help!” Yes, she does! The inside of the house looks like a tornado hit it, and the yard is full of weeds, tall grass, rusted lawn furniture, and garbage. She’s been cited for local code violations multiple times. She also refuses in-home care, and I feel powerless to ease her into any kind of dementia care. But I feel like if I wait too long, Mom’s going to end up with a code enforcement lien that will make it difficult to sell her house when she has to move to dementia care.

Growing up, our family was always tightly knit, and my sister and I still have a very strong bond. She lives in San Francisco and takes care of Mom, who lives in a dementia home nearby. About ten years ago, I moved to Boston, and it’s been harder and harder to see Mom. I visit when I can, but I want to be more helpful and I don’t want my sister to feel like I’m abandoning her to take care of Mom. Any suggestions?

My sister is playing a dangerous game with our well-to-do Mom. She knows Mom’s in the early stages of dementia and can’t keep track of her own finances. Sister has been telling Mom how her granddaughter Lyndi is now driving age and needs a new car. We’re not talking cheap either! Sister is counting on being able to dupe Mom into spending lavishly to please her granddaughter. Grassflower, Mom WORKED for her money. I think my sister is just being manipulative and selfish. What’s going to happen when Mom really needs the money to pay for her own care? I feel like she’s being taken to the cleaners!

So here’s my problem: I’m pretty sure Mom has dementia, but we aren’t acknowledging that openly. I want her to go to the doctor, but she won’t make appointments or keeps putting them off. The one time I managed to get her to go, Momma went in alone and didn’t remember a thing the doctor said. When I asked, the office staff replied that I wasn’t on the HIPAA release form. If I try to go in WITH Mom, the doctor doesn’t seem to understand that if Mom’s not mentally right, it doesn’t make sense to tell HER as much as me, because I’m the one who’s going to have to take care of her. But none of that matters if I can’t privately get the diagnosis from her doctor without upsetting her!

Mom’s had dementia for going on three years. She was always a conversationalist. We’d have long talks at night, and she could discuss ANYTHING until we were both too tired to keep going. Even after her diagnosis, she could talk, though less and less of it made sense. I know she has dementia, but it still felt like she was “there” in a way. Now when I visit, she just stares out the window, like she’s a million miles away. I know it’s just the disease, but it feels like a big BAD change. What should I expect and how do I deal with it?

Over the years, I’ve seen a lot of feedback from fellow dementia caregivers about strained family relationships that only got more toxic as the matriarch or patriarch who held the family together fell into decline and the care of parents fell to one of the siblings. One thing that seems particularly distasteful about this whole mess is that it falls into predictable patterns that I call the “Seven Deadly Sibs.” While no doubt some legitimate rationale lies behind each of these tropes, the sheer tone-deafness and astounding lack of sympathy for caregivers make them worthy of illustration.

My dad is in his late 70s and has dementia. It’s not that bad, but we moved him in with us a few years ago just to keep him safe. The problem is, he gets up at night and wanders into the kitchen for a snack. Sometimes he gets one, sometimes not. But he will walk up to the fridge, open the door, and just stare at it for 20 minutes. After that, he walks away, leaving the door open. Yesterday I had to throw out some chicken I had thawing for dinner because everything in the fridge was like 50 degrees! How do I stop this?

My dad has early onset dementia, so apart from the usual, he’s pretty lucid. He used to be a CPA, and while he can no longer even balance his own checkbook and can’t be trusted to drive without getting lost, he knew something was “off” even before I did. I took him to a neurologist, who ran some tests and made the diagnosis. Dad was super chill about adding me to his checking account and signing papers for POA, and even told me how he wanted his care administered. It was a good call. It’s a year later, he’s slipping downhill a bit more, and everything is in place. But here’s the problem: Dad was super open with me about his dementia, and I feel like I’m betraying him when I hold back info about how bad it’s getting. What to share? What NOT to?

Mom’s had dementia for some time now and lives in home. I knew it was time to move her there when she was getting lost in her own house, leaving food in the microwave for days, and no longer knew how to drive her car. But lately, things have gotten worse. She thinks there are little people living in a secret room (her closet) who steal her chocolates and move things around when she’s not looking. And she talks gibberish! I’m wondering how much of this can be addressed vs accepting it as the new, screwed-up normal. It’s more than a little unsettling, to both Mom AND me.

Mom was diagnosed with dementia about a year and a half ago but still lives at home, as it’s not that far advanced and someone is always with her. She walks…A LOT. Not to the mailbox or the kitchen, but aimless walking. I’ll ask her what she needs, and she’ll say “nothing.” If I ask where she’s going, she doesn’t know. What scares me is that she’s fallen 4 times in 2 months, and one of them broke her wrist. I got her Hipsters so she doesn’t break a hip, but the thought that I have to watch her 24×7 to make sure she doesn’t break a bone is freaking me out.

DH was diagnosed with Alzheimer’s early last year. He used to be the “organizer” and paid bills, kept the house in order, etc. Since then, it’s been all I can do to cook, clean, feed him, pay the bills, keep the car running, and make sure he takes his meds. He, on the other hand, seems happily disconnected from the worries of the world, though I know that’s not the reality. We used to be very close, but since I became his caregiver, something’s changed, and I feel bad that mostly I feel alone, heartbroken (for him), and, if I’m honest, resentful for feeling cheated out of living my own life. I know I need some kind of therapy but good luck finding time for that.

Neither Mom nor Dad can care for themselves anymore. When Mom’s mental health declined, she took well to living in a memory home, and before Dad’s dementia diagnosis, my dad was a quiet family man. He never raised his voice or got temperamental about anything. Now for some reason, he shouts at everyone. I’ve never seen an old man so upset, and I’m wondering if it’s just decades of repressed anger or if it’s something to do with the disease. I’ve talked to friends whose parents had dementia, and none of them report this kind of behavior. What’s actually going on here?

My mom lives in a dementia home nearby, and I visit her twice a week. She’s a real talker, but most of what she says is repetitive, fragmented, and doesn’t make sense. It’s hard to just sit there listening to her babbling, but when I try to guide the conversation, it backfires sometimes. For instance, if I bring up what my sister is doing, she thinks it’s HER sister (who died 6 years ago) and asks why she hasn’t visited. Sometimes it feels like I’m talking to a squirrel! I’d appreciate any tips for how to talk to Mom or at least spend the time in a way she can enjoy.

Mom and Dad live at home. Mom has dementia, and up until a few months ago, Dad’s taken care of her: paying the bills, reminding her to take her meds, driving her to doctor’s appointments, etc. Dad’s respiratory problems have gotten worse, to the point where he passes out even when he has his oxygen tank. His doctors have taken him off his meds and told him to make the best of his remaining time. He’s worried about Mom and has talked to her about moving into assisted living so they can continue to be together, but Mom absolutely refuses and keeps saying she’d rather die in her own home. I feel like this situation is unsustainable. What can I do about it?

Where to start? 84 yo Mom lives at home. House looks like bomb went off inside. Food lying everywhere for days, mounds of clutter (trip hazard), and she doesn’t even know the cat poops on the stovetop. Food spoiled in fridge, doesn’t remember how to microwave things. The problem is, when I offer to help clean up the clutter, throw out old food, or have a maid come in once a week, she refuses and says “everything’s fine.” No, it’s not. How do I convince her to accept help when she doesn’t think she needs it?!

90-year-old dad has had dementia for 5 years. He forgets people, repeats himself, the usual. He’s never been a big eater, but lately he barely touches food. The staff at his facility tell me it’s normal in the later stages of dementia. I guess I’m wondering if there are any tricks I can do to keep him eating, because if he doesn’t eat, he won’t be here long.

Help! I grew up in a family of four kids. Mom needs dementia care and doesn’t have much savings, so we sibs debated who should take care of her. Since we agreed I’d take care of her, my husband’s contracted progressive neurological disorder. I work at home, which is why they suggested I care for Mom, but I don’t have the time or resources to take that on AND care for my husband. I feel awful, like I broke a promise, but I’m also at wit’s end. I can’t do it all!

Hi, I’ve been having short-term memory problems for some time. I forget where I put stuff, what I was doing, and even certain words. My handwriting has gotten worse, I’ve forgotten to pay bills, and my organizing skills, which used to be good, have gone to hell in a handbasket. I’m only 68, and while I still can, I want to make it easy on my kids when they have to move me to a memory care facility. What should I be thinking about? I’d like to think I’m worrying for no reason, but that’s not what my gut tells me.

Dad’s always been politically opinionated. He gets calls from dozens of campaigns and while balancing his checkbook I found $1000 in donations in one month! I think he’s slipping mentally. He’s fallen for phone scams and is easy prey. I’m trying to plan for his care and I’m concerned he won’t have enough savings when he needs to go to a care facility. What are my options? If I bring up guardianship or even being a signatory on his bank account, he says I’m after his inheritance and should “wait for him to die first.” I feel trapped.

Mom is a social wallflower. When we did the initial tour of her dementia facility, it seemed calm and quiet, with sunny spots where she could quietly read or take a nap. But the staff insist on having her participate in social events, which she hates. It just gets her agitated and it takes forever to calm her down. The staff say agitation is to be expected, and they want to increase her meds to calm her down. I think the problem IS the staff. Why can’t they just leave her in her room to enjoy peace and quiet?

Moved Dad into a memory care facility 3 years ago. I check on him every day, talk, and bring him a treat (usually donuts). He seems happy, but he has me confused with the nurses, and says his kids never visit any more. I’m there EVERY OTHER DAY! My heart is breaking that he can go on and on about how proud he is of the daughter he imagines while his REAL daughter is standing right there. I feel like the REAL me doesn’t matter. Please help.

Grandma has dementia and doesn’t remember that Grandpa “Bill” died 8 years ago. In the past I’ve told Grandma that Grandpa’s “gone to the store and will be right back”, or I change the subject, but Mom keeps reminding Grandma that Grandpa’s dead, and it upsets her all over again. Mom insists that the truth is the best thing and that it’s a sin to lie. Meanwhile, Grandma keeps re-experiencing the loss. of Grandpa. Please help! I don’t know how to get through to Mom!

After Mom died and it was clear that Dad couldn’t live alone, we moved him to a senior living place that lets residents age-in-place. They have dementia care housing and that’s where he is now. Lately, Dad sits around all day in his pajamas and won’t change clothes for a week. The staff don’t seem too concerned. I think it’s unsanitary and verges on neglect. Who’s right, and what do I do about it?

Husband “Carl” was diagnosed with Alzheimer’s 2 years ago. I suspect he had it for some time, as I had been forced to take over paying bills and other tasks. He’d also wander off, get lost, and neighbors would find him a mile away. I moved him to a care facility last year and visit him every day. Lately, he thinks I’m his sister, and has a “girlfriend.” I know it’s not really “him,” but I feel betrayed and can’t continue like this. My heart is broken so many ways

Husband has FTD and can be angry, paranoid and worse. Until now, I’ve written it off to the disease and tried to adjust things so he can stay at home. Last week, daughter brought her child to visit. Husband, who didn’t recognize his own daughter, claimed some strange woman was stealing his children. He got very angry, hit me, and threatened her with a gun! I called the police, who took him to a psychiatric unit. Now husband’s psychiatrist is saying it’s not safe for him to come home, and I’m finding it almost impossible to locate a dementia care facility that will take him as a resident.

82 yo Mom with dementia has been losing weight, having trouble breathing, and feeling very tired, also complains about chest pain. We thought it was just anemia, doc thought congestive heart failure, sent her for full exam, discovered breast cancer from her 50s had returned, now metastatic. He wants her on chemo and tamoxifen. Definitely not telling her she has cancer, but husband and I talked about tradeoffs between treatment and letting her just live out her life. I feel like I’ll hate myself no matter what we decide.

My estranged brother “Tim” wants to move mom with dementia to his house in AZ, out of state and away from her friends and family in MS. We had an agreement that I’d take care of her personally if he took care of her financially. Now that he’s moving her, I can’t travel thousands of miles to uphold my end. I feel like the decision was made without me. Every time I try to discuss it with Tim, we get into an argument and it makes it even harder to do anything for Mom.

What should I do?

FIL has been in dementia care for 4 years. He was somewhat lucid when admitted, but lately doesn’t recognize his children, thinks dead people are alive, and thinks cereal is “cold white soup.” He acts paranoid, sees people who aren’t there, gets irritated at little things, doesn’t sleep much, and tries to fight the staff. He’s only 68, I feel like I’m watching him die in real time, and I’m both wondering how much longer he’ll have and feeling horrible for hoping it will all be over soon. Please help.

Mom’s in her 80s. Ever since Dad died two years ago, she has sat around the house doing nothing while dishes and laundry go undone and bills go unpaid. The house is also a mess. But she was like that BEFORE Dad died. HE paid the bills. My sister “Beth” says Mom has dementia. I think she’s just depressed, grieving, and lost, and Beth’s trying to order a naturally disorderly life. Our disagreement has already caused friction. DOES Mom have dementia? How can we tell for sure, and what do we do about it?

Dad’s 57 and has early onset dementia and wife and I moving him to a group home. This has taken time away from work. The only people at work I’ve told so far are the HR manager, to find out if my benefits will cover him as a dependent. I don’t know what to say to my boss. I’m afraid he’ll assume I’m not available to work late, can’t travel, and will not consider me for promotions because of caring for Dad.

Dad might live another 40 years, and my own life is getting sucked into this tornado. What’s worse, I feel guilty, and can’t take even MORE time to talk to a therapist about it. I feel trapped.