Dealing with a parent who has dementia

Look for help. Try agency on aging.

Sorry to hear, OP.

First, I don't think your father will change his approach to handling your mom. That's a lifelong dynamic.

Second, as R1 says, you need help. I think you will lose your mind trying to deal with both your mom and your dad. Let a disinterested 3rd party deal with them.

Do you live with your parents?

R3 Halfway at their place and halfway at my place. I tried to get them to sell or downsize and they’re steadfast that they’re going to die in their house.

I’m also trying to get them to let me start giving away a bunch of stuff as my mom’s collection of heavy antiques is bordering on hoard level.

Ugh, OP, trying to get her to get rid of antiques on top of all the rest. I think you need help.

My mom was a packrat. We knew she was dying. I think I tried to get her to get rid of stuff, but just gave up. I ended up cleaning things up after she died. It was a PITA, but she was already dealing w/cancer and I didn't want to push the issue.

This is not the moment for them for you to get rid of their stuff. It will be too difficult for her. Wait until she's rally into dementia and won't put up a fight, or wait until death.

You need to see at least 3 sets of professionals - 1) social worker so you learn how to deal, 2) accountant to figure out if they have money to stay in that house especially when they are incapacitated and will need 24/h care, which runs 10-20K a month, and 3) attorney to figure out estate planning.

I'm sorry.

[quote]How do you cope with a parent who has dementia?

Take 'em for a walk in some woods next state over. Halfway in, RUN!

OP, I am so sorry you're dealing with this. I, too, have a strong-willed parent who is in cognitive decline. It is very hard for all involved. I will be thinking of you in the coming months.

I agree completely with R6 on next steps. You need help and professional counsel about the concrete stuff like area support agencies, money, and legal matters.

I hope you have other family members who can pitch in. You should not be saddled with everything.

No advice but sending you lots of love OP.

OP, look into "palliative care." It's like hospice, but doesn't require a terminal diagnosis, although they can help with that, too, when the time comes.

They can help with your mom, and hopefully they can help you and your dad come up with some coping strategies for all involved.

Most if not all expenses can be covered by Medicaid/Medicare/insurance. Just Google palliative care + your state name-- try to find a dot gov site so you're getting it straight from the horse's mouth.

You call them up and tell them what's going on, and they will come out and meet with the three of you. They deal a lot with dementia.

OP, I just went through this with my mother. Like yours, she was strong willed, emotional and stubborn BEFORE the dementia. In the early years of her illness it was like she was turbo charged. You couldn’t convince her of anything. As crazy as it sounds, your dad may have the right idea. As long as she’s not putting him or herself in harm he needs to just let her do her thing. It’s a losing battle otherwise.

A couple years in, most of my mother’s aggression and stubbornness faded away and she became pleasant and child-like. The things she would once obsess over just faded away. I wish this for your mom.

You really need to take care of yourself, OP. Mediation, exercise and a great support team helped me tremendously. If you don’t work daily on your mental health you will lose your mind. Good luck to you and your whole family.

Mine got worse, rapidly. Prepare yourself op. Look into nursing homes now. It a horrible devastating disease.

As someone who has had this experience I can tell you that you need help. You can't do this alone. You have a person with dementia and her spouse who is clueless. I don't know if it will help, but you need to take him to her doctor or who ever and have them explain what is happening to her and how he can help you handle it. Then get someone to come in and bathe her and help her with breakfast, then come back at dinner/bed time to get her settled. I think you can probably get away with 4 hours a day. It's worth it.

Another option is to put them in a memory care facility. Together. Don't allow yourself to be on the defensive and try to explain or appease. It won't work. Just deal with the reality of the situation. Dementia patients have "moments of lucidity" but they're just moments. And the other thing you need to do is find an adult day care facility or a Sitter who can come over to give you and your father a break. Go out get a meal, go to a movie go to the park and walk around.

If there's senior citizens center take him and see what's available in terms of activities. He will stay mentally sharper if he can interact with other people. OP, my heart goes out to you. Taking care of a parent with Dementia is a thankless job. Don't look for gratitude or appreciation. You won't get it. You need to get on the internet and find services for Seniors. You have an Area Agency on Aging that can help you find services. So can the county or city offices. Sometimes these community centers have services. Get busy. It's not going to get easier.

Thank you all for your kind replies and personal input. I wanted to have a good night's sleep and process everything before I responded.

Yes, my dad and I are meeting with my mom's PCP this week to make a plan regarding her current and future care. One of the issues is that he has power of attorney over her medical decisions and has not forced her to accept home healthcare or even maid service. That would help me out a lot.

I imagine we are also going to start looking at assisted living facilities, nursing homes, or memory care facilities to at least have a plan in case we need it.

For those mentioning Hospice or palliative care, she's not there just yet. She's still in the early stages of vascular dementia but her cluster B personality disorder symptoms are a bit exacerbated to the point where it's hard to live with. I'm hoping the Aricept prescription she started is going to slow the progression some.

The main issue is getting my dad on board and once he's on board that will make my life a lot easier.

Also, thanks for the agency on aging suggestion. I will be contacting them soon.

My mom also wanted to never leave her last independent residence, but she became unsafe on her own. I had taken over her finances per her request, but she started having emotional episodes at home, being unable to manage her medications & food and also dressing herself. Then she had a couple of wandering episodes and a kitchen fire. I had to move her into first assisted living then a SNF.

Now her dementia is end stage. She cannot toilet herself, dress herself and can barely talk. She also has uncontrolled mood swings and sleep cycle disturbances.

I would not have forseen this getting as bad as it has, as she was with it for so many years, but COVID and its isolation did a number on her and our family. She is over 90.

I would start reading about the stages of dementia and find a way to get yourself help with them because you will need it. Good luck, OP.

Hugs to you OP. So sorry you are dealing with this ❤️

Like some other posters, I have been through this situation. My mother had vascular dementia. My father was numb with misery and could not cope. My sister was determined to take care of everything herself and wanted my parents to stay together. I said no, and hired a social worker who specialized in senior care to advise us.

It was perfect. We were able to get my mother evaluated and placed in a memory care facility. The social worker had to us that "Sometimes, fifty years of marriage is enough." She was right: my parents were better off separated. My mother, who had always been crazy anyway, enjoyed being in a new place and making friends with the other residents. My father was thrilled to have peace and quiet.

So, yes, do not martyr yourself. Reach out for as much help as possible.

[quote] I tried to get them to sell or downsize and they’re steadfast that they’re going to die in their house.

[quote]I’m also trying to get them to let me start giving away a bunch of stuff as my mom’s collection of heavy antiques is bordering on hoard level.

Let them live where they want so long as one of them 8s capable of making decisions.

Unless the furniture represents a clear physical hazard, again, let them live in their own house with their own things.

When no one is capable of making sound decisions, you can do as you like. You taking charge and having them downsize or move and unload possessions does fuck all for the health of anybody, it just demonstrates that you've taken 9n the role of bossy bitch in charge.

Your parents have too much stuff. So what? You watched too many episodes of hoarders (yet not enough to know that heavy furniture that you don't like is not the same as a severe -- and incurable -- mental illness.)

Focus on important things where you can make a positive change, not that you might have to dispose of their things after they die. Or that they move to a smaller (and unfamiliar) place, or that - surprise - your father prefers to appease his wife while he still can.

[quote] One of the issues is that he has power of attorney over her medical decisions and has not forced her to accept home healthcare or even maid service. That would help me out a lot.

I know it's frustrating, OP, but maybe your dad can't "force" your mom to do anything. You also can't force your dad to do anything, as you've discovered.

What you can do is to avoid becoming codependent with your parents. It's hard, but I would avoid trying to fill every gap in their lives. You'll drive yourself crazy. I think that, at some point, if you maintain your boundaries (yes, boundaries), your dad will seek and accept help outside of just you.

Get professionals involved ASAP, dementia can have very unpredictable outcomes and does not progress in a gradual and easily predictable way. It's entirely possible your mom could become violent no matter how crazy that seems.

R18 I disagree. I have had experience with this and it is much better to take the lead before a crisis. I am glad OP and his father are meeting with the doctors and experts. His father may not want to listen to him. When children try, it seems to bring out a contrarian streak in elderly parents, but also because as people age they resist change. They want everything to just stay the same. So talking to the Doctor, will be a big help. Don't expect miracles, but baby steps are good. The other thing you should do is ask the doctor to put you in touch with a social worker that specializes in the needs of the elderly. She can explain to your father what is necessary and she can encourage him without it seeming like you a re removing his power and independence.

My mother wore a diaper at night. But she would wake up and insist on going to the bathroom, and she would get confused and twice ended up on the floor under the dining room table. She was screaming about her hip so we called 911 and they took her to the hospital for an X-ray. Fortunately her hip was not broken. But they kept her overnight to make sure. (She was 89.) This happened two times within a month. At that point the hospital social worker intervened. She said they would not release mother to go home because she needed 24 hour care. She suggested we put her in a facility for "Rehab." Medicare covers 60 days of Rehab and they can extend it. Eventually mother was signed in to the nursing home. It was heart breaking for me because every once in a while she'd say she wanted to go home, and we told her she could come home if she did the Physical Therapy and got better. She was consistently refusing therapy.

Went through this too. R21 is right. Don't wait for a crisis. My mother died last year of heart disease (thank goodness) in a memory care facility. It was merciful. But the lead up to her death was the worst time of my life. My mother was angry, paranoid, vengeful. But she could put her makeup on perfectly and "act normal." Here's my advice. Have your mother evaluated by a neurologist. The neurologist's evaluation convinced my stepdad that my mother's dementia was as bad as my sister and I said. The evaluation also sets a benchmark, so if she worsens, everybody is clear. My mother's PCP would not help us, denied my mother's dementia, and went MIA and wouldn't answer our phone calls. The neurologist saved the day. (My mother would insult the neurologist during the evals, and he would answer her calmly until she pushed his button too many times and he'd lose it a little.)

We didn't live near my mother, and her dementia led her to clear out her house. She sent jewelry and art works to the town dump with the gardener. My stepdad was clueless. My mother continued to drive until the neurologist finally said No, and even then, my stepdad would had over the keys.

We hired a caregiver/driver, but my parents were rude to her. Finally, when things got much worse, my stepdad asked for help. He begged for her to go into assisted living. My mother lasted less than 10 minutes. She tried to make a break for it out the window after assaulting a caregiver at the facility. She was then sent straight to the Memory Care unit, and that was the first time any of us rested easy for years.

Once in Memory Care, we put her on Hospice for her heart condition. We then pulled all her heart meds, and within four months she was dead at 92. Many of her friends don't speak to us now. But my stepdad is thriving, living in a Veterans Home, riding his bicycle and lifting weights at 96. If I am diagnosed with dementia, I'm taking the cocktail special first class flight to Switzerland.

Wow, R22, that's a lot to go through.

Your mom's friends won't speak to you now because you put her in hospice and pulled her meds?

Thanks R23 -- My mother's friends felt that she had enough money to be kept at home. We tried. When my mother was sent to Memory Care, the facility wouldn't allow visitors for a month. No one. So she would settle down. She sat by the door with her suitcase. The hospice team would visit, and let us know she was okay. But then after the month, my mother changed. My stepfather visited her every day, as did a few good friends. She was sweet but lost. Most friends couldn't bear it and didn't visit. No one knows what it's like to have this in your family unless they've been through it too. My friends who'd been through it were invaluable in their support and guidance. In fact it was my mother's friend who is a neurologist himself who advised us on a plan of action.

R23 -- no one but my sister and I knew about pulling the meds. You can't be on hospice and take life-sustaining medication. It was the only way we could get her on hospice and have trained nurses and social workers visit her in memory care. It's all a trade-off when elderly people do not make plans and others are left scrambling to make things right. I'm an elder now, and I have a plan.

Sorry to compare your mother to Britney Spears, but people always think it's so easy to "help" people. "Why won't anyone help her?" It's not so easy.

R26, you're right about that. It's usually the adult child who went off to California forty years ago or something, the one who never comes back to visit, never comes back to help and doesn't send money outside of a drop-in-the-bucket birthday check that can't be put toward real expenses, that suddenly gets all "what have you done to Mom?!" over the phone. It's a cliché because it is so often the case.

In my instance, it was my paternal grandma's daughter, my aunt, this summer, when my grandma was close to death. She didn't have dementia, but she was slowing way down and she wanted to go at home. It was getting risky for her to continue to live alone, so I got hospice involved, that way she would hopefully pass before the time came where she had no choice by to go into a nursing home (which she did, thankfully).

It will make a person's blood boil. Where are these people when they call in the middle of the night saying they can't catch their breath, who brings the truck and a chainsaw when the tree limbs blow down, who mows, who pays to have the carpet cleaned, who takes the dog to the groomer, who has to double their visits because the MIA relative can't bother to take a flight back to Flyoverstan, yet can take annual trips to the Caribbean and Hawaii, and who takes them to the doctor-- those doctor visits can take a long-ass time. Give me a fucking break.

All my grandma wanted was to see her daughter one last time and the daughter couldn't even do that. I'll never forgive her for that. But boy did she suddenly have opinions at the end, from 1,500 miles away. She had never even heard of hospice, can you believe that? It was like she thought we were making it all up! The fuckin' nerve!

An elder care attorney would be very helpful. They know of a lot of resources.

R27 fortunately I’m an only child and there is no other family (besides my dad) left so I never have to worry about anyone else accusing me of putting mother away somewhere.

However, that means absolutely no help either.

My dad had Parkinson's and dementia, and got to be too much for my mom to handle at home. They sold the house I grew up in (they were there 42 years), as it was two stories and dad could not navigate stairs any longer. She put him in a home, and it did not take long for him to get the point of not knowing who she was, or thinking she was someone else, when she visited. They had been married 58 years by then - just heartbreaking for her. He was in the home 17 months before he passed, but that whole experience really weighed on her. She died recently, but luckily (I guess) she was coherent until her body started to shut down, which lead to her passing in just a few days.

R29, my sympathies for all your going through. Both ways are very hard.

I hope you do look into palliative care. It's an excellent resource and they know all the ins and outs that patients and their families, who are down in the trenches just trying to get through the day wouldn't have the wherewithal to think of. You and your dad need more hands on deck, that's for sure, and palliative care is a great place to start. They can network with other groups, and even if your mom goes into a home, they can continue to provide services to her from within the facility. Same with hospice.

My husband (mid 80s) is in mid-moderate stage. My father died at 59, my mother at 78. While my mom became repetitive (if she told me one more time about how shocked she was to see Shirley Temple in her skivvies in some short subject on TCM…), but neither really showed signs of dementia—my dad’s three-pack a day habit caught up with him, and my mom had emphysema and myeloid dysplastic syndrome, and she had a stroke while already hospitalized for observation—she never came out of it and died nine days later.

Dementia is something entirely different. My husband is fairly happy and physically pretty well, but the complete loss of short term memory breaks my heart, as do my occasional rages (never physical just verbal, and he forgets in an hour—the one upside to short term memory less). He can still be sweet and has a sense of humor, but he is now the more passive person in the relationship (he was always the problem solver). I’m 66 and don’t yet feel old, but I do feel worn down and that we no longer have an equal partnership. Not his fault and no self-pity on my part, truly, but we live in a small college town. His siblings are also aging (and also panicky because one assumed my husband would support her, since she’s never supported herself). His children live far away: one is schizoaffective (diagnosed), the other mentally ill and self-centered. He could live in this stage for many years or the disease could progress (what a word for it!) rapidly—no predicting. I don’t want him to die and, within it’s narrowing limits, his life seems worth living—his ex-wife developed Alzheimer’s about twelve years ago and chose to end it nine years ago. He has expressed no suicidal desires (thank God, as I don’t think I could help him and I’d still rather have him with me as long as he has no pain or sorrow), so I suspect each person experiences it differently. When his wife was going through her decline and had decided she would her life, he said, were he to develop dementia, he might choose to end his life. No such inclinations since the diagnosis (I think he forgets he has the cognitive decline) and I’m glad. It also suggests you can’t really know how you will react until you are in the situation yourself. I do feel pretty alone—I retired before he started showing symptoms (no causal connection—I was just tired of the academic rat race)—good that I did, as this is a 24-hour job. Not what either of us planned for our retirement. I’m glad I have POA, as his relatives would run through his IRA in short order. It somehow never occurred to them that he might need that money for his own health support. That’s their problem!.

You can get palliative care without being in hospice, OP.

We're facing a different situation. My 81 yr old father was diagnosed with bone marrow cancer. he's been slowing down a lot the past year. His wife is a cancer survivor but she is in her early 70's and doing OK.I know that he is going to need care. I know that she isn't going to get it from her. Since me and my siblings live out of state, I don't want to be the guy who calls up bitching. I want to be supportive. But I can't drop everything and move back home. A friend suggested I talk to them about arranging a care plan and working with Cancer support groups and maybe a hospital Social worker to arrange for care workers to come in and help bathe and dress him and work with them. They live well. They aren't rich, but they are affluent and they ought to have something saved to deal with this. They live in a 4,000 SF Mc Mansion. What I do worry about is whether they will stubbornly cling to their lifestyle and expect others to accommodate it.

OP, I'm sorry you're going through this. I just got the phone call today from my Step Dad that he has to put my 78 year old mother into a home. She's been steadily going downhill for the past 6 or so years with dementia. She refused to see any doctor and is now violent. He said she started throwing fireplace tools at him, then she ran outside, took a neighbors package and refused to give it back. My step dad had to wrestle it away from her and apparently she then ran down the street away from him.

I feel bad for both of them, but it's hard because he was very emotionally abusive towards her and us (four kids). She once told me that if she had to choose between him and me, she would choose him. And she did. She stood by while he abused her kids and kicked us all out of the house.

While I love my mother because she's my mother, I am really struggling with this. On some level, I wish my step dad would do a murder suicide thing and end it, but I don't think he will. It's just messy all around. I'm also estranged from my bio dad because he, too was abusive and narcissistic.

Getting older sucks and if I end up with dementia, I will end my life before it gets too far. I know my mother was aware at one point she was getting dementia because she told her sister that she knew she had it and just wanted to die.

I’m in the middle of it myself for my Dad (85 years old) I Sold my condo and moved in with my Dad 2 years ago as he started going downhill into dementia. I am working with a wonderful local agency and have a caregiver 8-4 each day (while I am working ) . My sister and I divide the time when we don't have a caregiver. I strongly recommend working with a neurologist to get an official diagnosis ASAP. If your parent has long term care insurance -work on getting the claim underway and approved . That took 8 me months , an initial denial and an appeal, coupled with doctor and care records to back things up . They make you fight tooth and nail for what is rightfully the insured person’s.

He still knows us and can have limited conversations -a blessing . He is cheerful overall He minded us taking his keys away (after he drove to NYC one day, got lost and we had to get a police alert to find him disoriented in Brooklyn). He was definitely bitter, but after 4 -5 months , he didn’t care anymore. He was a very sociable person (widower for 7 years) and was an easy target for grifters at restaurant /bars-so we had to scare them off. .

I had a service come and empty out attic (my parents lived there 50 plus years and there was a packed attic). Projects to improve the house never hurt, and can help you keep sane .

Wishing anyone going through this the very best . It is torture !

There are caregivers support groups. I went to one when my mom was ill. I made a couple of good friends from the support group. I'm not normally a joiner, but tried it.

My demented mother is fine! She sends her love!

[quote]lately she is aggressive and paranoid

My mom who has dementia was at that stage a few years ago. You know what came after that? Throwing stuff out. Maybe your mom will progress to that as well since you mentioned that there's a surplus of antique furniture. At that point, perhaps she'll be amenable to your plan of getting rid of the pieces? But, be aware that she might start throwing out stuff you don't want tossed. This could include important papers and valuables. Make sure that those things are out of her reach.

At the time, I was looking online to see how others were coping etc and came across this thread of a daughter relating her experience with her mom's obsessive need to chuck things out. It gave me a laugh because her mom was SO determined to throw everyone's stuff out.

My 95 year old mother also has vascular dementia. My sister and brother in law bought my mother's house and moved in with her about 5 years ago. I don't think my sister ever realized how tough being her caregiver would be. If the vascular dementia is allowed to progress naturally, most patients will die from a heart attack or stroke from 5-10 years according to what I have read. Mentally my mother is ravaged but physically she is still quite agile with remarkable energy. Her heart medications keep everything working and are probably what are keeping her alive. I have been wrestling with the idea of approaching my sister and discussing that we stop the medication that is keeping her alive but I haven't mentioned it and feel guilty about considering it. Thanks to all who have shared above and wishing you strength, OP. There is no preparation for this but I adore your devotion to your parents.

I never realized that people could switch from packrat to purger. Good idea to sift out important documents, jewelry, etc. However, they might then accuse you of stealing.

^Yes to that. My sister who lives next door took to checking the garbage regularly. She found things my mother would never have thrown out were she in her right mind. She took the stuff and held it at her house without making a scene. I would remove the important items and tell Mom you're holding it for safekeeping. Give it back if it causes a problem. Drag your feet though and maybe she'll forget.

OP here. I wanted to add one thing that I've seen other posters mention. My mom actually has a neurologist and was diagnosed with dementia due to her failing cognitive benchmark test. Honestly, she only missed one or two questions but it was enough to diagnose her coupled with her paranoia and a few slight delusions.

My mother has been having delusions for a few years now. She mostly talks about men coming into her house and raping her. It's all very weird. Sometimes she'll mention that they had a big party at her house, which isn't true. So far, she still seems to remember her kids but I'm sure that's going to stop soon. The thing is, she's never been officially diagnosed with it because she refuses to see a doctor insisting that nothing is wrong with her.

My mother and I took care of my Aunt who had Alzheimer's. She had no family of her own. She lived with us. One day she accused my mother of stealing her purse. Of course this did not happen. Later we found it in the dishwasher. Where she had hidden it.

The paranoia and nastiness came as a surprise to me. Personality changes were early on while everything else was functional so I didn't make the connection and we really made an effort to reason with her. Just having to listen to the tirades, accusations and breakdowns is so exhausting.

This is why I scoff at reports of breakthroughs in extending life spans. If they don't make measurable advances in avoiding dementia at the same time, there's no damn point.

R46, 100%. Not just dementia, either. What is the quality of life for these people who are wracked with advanced osteoporosis or rheumatoid arthritis, etc.

My grandma had the former, and she used to tell me on the phone that she didn't know why she was still here. Her pain was so bad she couldn't do anything. Only after she dropped 50lbs did she qualify for hospice, and only once that happens can they have decent pain medication. She was 92 and couldn't do anything, still lived 'independently' in her home. She'd outlived her friends and siblings. It makes me so sad to think about what her days must have been like.

My grandaunt has RA, her only offspring died a couple years ago and she can't do anything either. She used to garden and cook and can and make wine-- now her hands don't work, so she just sits in her recliner all day. She says she prays every day to die. She's 80, but she's still "fit", she just cannot do anything.

I don't understand this quest for longevity, either. Look at all the conditions for which treatment hasn't changed in 50-100 years. And this intractable pain that the elderly suffer with which cannot be treated until they sign a paper that says they're ready to die.

What the fuck

I often question the wisdom of pumping statins into the elderly so they don't die of heart disease. I'd much rather die at 80 of a heart attack in my sleep, than hang on until 90 in pain and increasing dementia.

OP here with an update.

My dad and I met with my mom's PCP this past week. My dad is still very reluctant to even discuss memory care facilities but the doctor reiterated that even if we are not ready to put her into one, we need to go ahead and look at them and possibly get on the waiting list (I agree with that). We also found out that even with a medical power of attorney, we cannot force my mom to accept home healthcare (Not shocked but disappointed at that). Still, I'm glad my dad went with me as I hope it wakes him up to the reality of the situation.

Also, my mom has calmed down in the past few days and that makes it easier.

Glad you're making a little headway, R49. I know it's like fumbling around in the dark.

I am always grateful for these threads because so much information can be gleaned from the hits and misses of others, and many of us are in the same boat, or have been or will be soon enough.

R49, my step dad is looking into putting my mom into a home but are you saying he cannot force her to go? She hasn't been officially diagnosed with anything although it's pretty obvious she has dementia. She refuses to go to the doctor but is getting increasingly violent. She keep threatening to kill my step dad and he's worried that she might. But yet, they cannot seem to get her to a doctor. It's all heartbreaking.

R51, next time she threatens to kill him, he needs to call 911. That may be the only way she can be evaluated and diagnosed. Sounds extreme but sometimes it’s best to get others involved in these sort of things.

My bf’s mother has dementia. He begged her to stop driving even before she was diagnosed. She ended up in a parking lot fender bender that was 100% not her fault and her reaction led the responding officer to call an ambulance. She was hospitalized, checked out and referred to a neurologist. It also began the process of her having her drivers license revoked.

Thank you, r52. I'm not sure my step dad would be willing to do that, but I'll let him know. I agree that the only way to get her diagnosed though is likely through emergency services.

R49 I’m not sure he could force her to go to a home but he definitely can’t force her to accept home healthcare if she doesn’t want to.

I imagine the laws might be different in different states.

When you deal with hospitals, and EMS personnel so much is subjective. We were lucky we had "pushy" nurses and doctors who insisted we should look into both care facilities and home care. Legally they couldn't force us, but they were very persuasive. I think but I don't know, that when a hospital or medical professional, like your PCP recommends something and you refuse it, against medical advice there could be consequences. You might tell your father that he can be held legally responsible of something bad happens because they didn't act when they could have. Frame it as a safety issue. The reason home care is necessary is a health and safety issue.

This brings back memories (ironic) of both my parent’s declines. #1) I hope you’re reminding yourself that your mom isn’t making these choices. Her behavior is something over which she has declining control. #2) you still get to have feelings about how that affects you. #3) be good to yourself & your parents in that order. #4) you’re going to have to live w how you handle this the rest of your life. When you don’t know what to do be the most patient & kind version of yourself you can muster. #5) surround yourself w people you trust & love. #6) wishing you well. I hope posting helps.

Your mistake was getting emotionally involved with your parents.

Ugh - I've been going through this for the past 8 years. I'm so fortunate that my mom has actually become a brighter sunnier person instead of the paranoid and negative person that some dementia patients turn into.

Her level has flatlined a bit - it has not become worse the past few years - but man it's a roller-coaster. Some days she's fine, other days - WTF IS GOING ON HERE?

The WORST part is all of the scam telemarketers and mail-based scams that target her. Literally, every 3 months I have to deal with SOMEONE stealing money from her. No, I'm not exaggerating.

I worry all the fucking time - but there's not much I can do. I live 2000 miles away and visit every 6 weeks to check in on her. She lives in a senior facility, so there are great activities and forced socialization that I think does wonders for her. Hell, I'd like to live there. But it's still a horrible experience.

"Do you live with your parents?"

Don't most Dataloungers?

What happens with Alzheimer's and dementia patients is that they deteriorate, then plateau and then deteriorate then plateau. Anything that is very disruptive can trigger deterioration and sometimes they will regain cognition but usually not. By disruptions I mean a drastic change in environment for example. My mother needed surgery. She'd be in the hos[ital for about 3-4 days then PT at home for a couple of weeks. We were caring for my Aunt who had Alzheimer's. We sent her over to her favorite nieces house. Lots of turbulence there. Niece and hubby argued a lot, huge shouting matches. Their pre-teenaged kids were monsters. The whole environment was out of control. My poor aunt was unraveling when we picked her up. It took weeks to settle her down.

Yes, a trip to the hospital can be traumatizing enough to cause a decline in people over 80, and if they experience this extreme disorientation from that, sometimes they come around, but usually they don't, as R60 said. It's called Hospital-Acquired Delirium.

I'm just throwing that out there in case someone's parent or partner comes out of the hospital not quite right.

One thing I discovered is UTIs. When I went over to her apartment to cook dinner, I remember my 82 yr old mother was fine. She complained of not feeling good but it was non specific. Anyway, she fell asleep in her favorite chair and about 30 minute later when she awoke, she was talking out of her head. It was crazy. Almost hallucinating. I thought she had a stroke so I brought her to the ER. She had a low grade fever, and the doctors examined her. Not a stroke, but a Urinary Tract Infection. Very common in elderly people, especially if they don't drink enough water. They started her on an IV antibiotics kept her overnight and told me she had to take the antibiotics for about a week or so, but she'd be fine in about 48 hours once the antibiotics started working, and she was. Completely normal.

As someone had to get help to get my grandfather out of his house about ten years ago, I feel you and I feel how absolutely frustrating it is to do on your own.

In my case, the family lawyer was a big help. The house was a shambles - we have the hoard problem in the family - and it was threatening not only his health, but anyone who would go in. My father would just argue with him and didn’t want to do legwork.

In the end it took a lawyer, financial advisor, a care coordinator and a junk hauling company to convince him it was time to go. Then he was very happy in his care home. What can you do.

OP here again. The biggest issue I’m facing right now is my mom refuses to sign important documents because she thinks I’m “trying to take over.”

My dad’s solution is for me to “sweet talk” her instead of actually forcing her to or getting a court ordered conservatorship.

She’s also refusing to go to the bank and have me on the joint accounts between her and my dad. Sigh.

Had the same thing with my mom. And if you do get her to agree, you have to practically gag her because one wrong word at the bank and they will halt the process. Treat it as if you're going through TSA at the airport. Hope you can convince her, r64.

We tried to see an elder law attorney to protect the money but at the last minute, she refused. And that was that.

Not a good day here. It’s not necessarily a dementia thing but my mom got fecal matter all over her bathroom this morning.

I’m trying to get home healthcare but they told me my father needed to get rid of the supplemental insurance and have just Medicare so they would pay for it. He hasn’t done that yet and I can’t force him.

My mom has started her “I just wish I was dead” shtick. I used to tell her “No, that’s not what anyone wants” but it really would be easier if my dad won’t let me put her into a home or get more help for me.

I understand he’s in denial and doesn’t want to face it but he’s not giving me the tools I need to handle everything for him. I’m also trying to get him to chance his will because right now everything would go to my mom and she can’t even write a check.

It’s just insanity.

OP, pick your battles. Skip the furniture selling for now.

Get all the help you can afford when and as you need it and tough it out. This is life.

My dad wants me to "put him to sleep" if things get bad. He's 84 and in great shape. He doesn't want to suffer. His plan is benzos and a grill in the bathroom. It's insane America doesn't have assisted suicide

R66/OP, stop trying to do everything and let your father deal with it. He will come around in days if not hours once he has to start literally dealing with her shit. It is a dementia issue and it’s called “not able to toilet.” You will find shit all over the toilet and on the floor. Soon she will be shitting the bed and in her pants on the way to the toilet and eventually wherever she happens to be and has to shit.

You don’t have to be the hero here. It’s your father’s responsibility. If he can’t handle it you can report it to your mother’s physician and they can report it to the state as hazardous care.

I'm sorry, r66. I'm getting ready to leave to go see my dementia ridden Mom as we're doing Thanksgiving today with her and my siblings since she doesn't know when Thanksgiving is anyway. I totally understand the wishing they would just die part because I know my mom said she didn't want to live with dementia when she realized at the beginning that she was getting it. My step father still has not taken her to a doctor because he says she refuses to go. Makes no sense to me when he could just tell her they are going out for lunch and then they end up a the doctor's office. But like r70 said, it's really his burden and he seems to not take our advice well when we suggest things to him. My mom was a bitch anyway so it's not like any of us really want to take care of her (she kicked 3 of her 4 kids out of the house. My brothers were 11 and 9 when that happened). She stopped speaking to me and my sister after we both came out to her. I think it was about a year and a half until we heard from her.

I do hate that she's going thru this because after all, she still is my mom but she picked my step dad; an abusive, alcoholic husband over her kids and so he can deal with her.

In time, accept that it's ok not to romanticize this disease. The brain is no longer functioning. Much of what you imagine they are feeling is probably your own feelings, projected on to them.

R66, I had similar problems. We had ma covered with a nurses aide who also had another client in her building. She would come in in t he morning, around 6:30-7 AM, bathe her dress her and giver her breakfast. Put mother in her chair (she was diapered.) and let her watch her cooking shows. By 9:30AM she was gone. The Aide returned at about 12-12:30 with lunch. She'd clean Ma up and visit with her, leaving around 2:30. I would arrive at 3:30-4:00. We'd visit, I'd cook, clean up and get her into bed by 10:30. Mother could use the walker, and she was in the early stages so things worked out for about 8 months. One day I walked in and she was in bed! Very unusual. And there was feces in her favorite chair, and drops on the carpet. The bathroom was a mess. She was in bed with the sheet covering her up to her head. I said,"Why are you in bed?" She yelled at me."Get out! I'm tired and I'm taking a nap. Go away!" Well, there was feces all over her. Her hands her body, her clothes and the sheets. Apparently she didn't get to the toilet fast enough and she tried to clean it up but only made matter s worse. So I cleaned her up, stripped the bed, and cleaned the bathroom. I felt so sorry for her because she was mortified. So embarrassed. I got our little rug cleaner out and scrubbed the chair and the carpet. It was hard. A few months later she fell and we thought her hip was broken so she went to the hospital. The social worker said she had to have 24 hr. care and we sent her to a rehab facility/nursing home. She passed away 14 months later.

It’s up to the individual to decide whether it is their responsibility. When my grandma, who I dearly loved, took a turn for the worse, my parents were not very helpful. They just didn’t know what to do, and they’re seniors themselves. I took it from there because I loved her. I don’t think I would be able to forgive myself, ever, if I had just told myself she was someone else’s responsibility.

Of course anyone has the right to feel what they feel, but it’s not some else’s place to tell you what that is. They won’t have to live with your choices— you will.

That’s just for whomever needs to hear it.

[quote] Get all the help you can afford when and as you need it and tough it out. This is life.

I just love compassionate people.

I had a situation similar to many of you with my mother (father was already deceased). The odd thing is that she was quite a pill (generalized verbal rages--not toward others) before the dementia but actually mellowed out with it. She died in January at 85.

Throw mama from the train.

It could be burdensome and depressing at the time, but now, as I look back from the perspective of 12 years ago, I'm grateful for the time I spent with my mother helping her and being a caregiver. We bonded, and when she passed away, I felt peaceful. I had no regrets. I still miss her, but I smile now because I realize that in spite of everything, it was a good time and I did what I needed to do.

My parents died tragically before retirement age. They were both self-medicating alcoholics, with mood/personality disorders and were starting to lose it mentally. As bad as it sounds, I think my brother and I dodged a major PITA.

I'm r71. My mom looked like she had aged 20 years since May of this year (last time I saw her. She lives pretty far away) when I saw her on Sunday. I guess my step father finally got her to a doctor last week and they need to do some tests before they give an official diagnosis.

It was good to see her and she still remembered all four of her kids' names. But the situation at her place is so fucking toxic that my sister and I agreed we can't see her anymore as long as my Step dad is in the picture. I sat and watched him and one of my brothers make fun of my mom who had a delusion while we were there. It was fucking awful to watch two grown men laughing at her. My step dad has all the control over her and he's not neglecting her as she looked like she had been eating, etc. But he's an alcoholic who has always told her she was stupid and berated her in front of others. When I would tell her she needed to leave him (when she was sane) she would tell me, "Oh, that's just who he is. We love each other." But it's a fucked up version of love and I honestly believe she got dementia as a way to disassociate from his emotional abuse. Both she and my step dad are Trumpers and so are my brothers. My sister and I have been through YEARS of therapy to get past the abuse we suffered from her, my real dad and my step dad. It's so unhealthy for us to be around the same shit.

I honestly hope my mom dies soon and my bio dad. I know that sounds terrible but they are such miserable, damaged people who are exhausting to be around.

My mom keeps wanting me to “fix her computer.” There’s nothing really wrong with it but she does keep forgetting how to use it correctly.

I feel guilty in a way but I’m lying and telling her “Oh, I’ll fix it soon. Maybe in a few days.” with no intention of actually fixing it.

The last thing I need is for her to use a credit card on a phishing site or send money to some scam artist on Facebook.

Keep ur eye on your father. A close relative of mine committed suicide because his wife with dementia was too difficult to live with. He saw no other way out so he shot himself.

Both my parents died before any signs of dementia, but I went through it with one of my best friends. I'd noticed a few years before he died that he was asking me the same questions over and over every time we talked. I asked his wife about it and she had noticed it too. He progressed until the last 6 months of his life (he died at 77) he rapidly went from forgetting things to becoming violent. The last 3 months were the worst. He would attack his wife of almost 50 years out of nowhere, both verbally and occasionally physically. He would call his wife's late mother (who he adored) the most horrible things (whore, tramp, bitch, etc). The only thing that would calm him down is me talking to him about the old days when we worked together. He loved to reminisce. He could walk out of a room completely happy and 5 minutes later come back in and start spewing the most vile hateful things at his wife he could come up with. When he started to slap her for no reason at all I knew we had to do something. I called the police at least 3 times when he'd get violent. They never took him to jail, but to a hospital. The last time I had to call them they took him to the hospital and they had to strap him down. The put every narcotic they could think of in him over the 6 weeks he was there to try and calm down his violent streak, but nothing worked. Eventually they released him to a hospice center and he rapidly went downhill. He lasted there about a month until he just stopped breathing one night. Frankly it was a relief to see him go. His wife's life had been made a misery.

During the winter months I often found leaving the back door open really helped.

R83 are you referring to your ass? Not trying to be a smart ass.

This is a very small thing, but it helped me a lot "eldersitting" a loved one with dementia. When they are having a hard time, or a bad day, get them to talk about something from the past. Their elementary school, movies on Saturdays, their own grandparents, etc. They have command of the subject, they forget about struggling just to remember & communicate for a while, and it's a reprieve.

[quote]How do you cope with a parent who has dementia?

Booze.

R84, do you have dementia?

And edibles

My mother used to play religious music, like hymns, by a choir, or classical music that was soothing and it really helped keep my 82 yr old Auntie calm. She had Alzheimer's. She suffered for 9 years before finally having a stroke that killed her.

R89, studies have shown that in people with dementia memories associated with music remain even when other memories are gone.

R90 I have no doubt that is true, but my 82 yr old Auntie was more of a LAwrence Welk girl, so the heavenly choirs and the classical music was new to her. And yet it worked. Calmed her right down. We had to be careful with the news and weather channels. If TV was on it was HGTV or Cooking shows. Or music. Nothing unsettling, nothing that would get her agitated.

how old is she?

R92 81

I'm another one whose parent's personality improved with dementia. My father went from being physically and verbally abusive to a sweet, addled old man who stared at golf on TV all day.

He was emotionally dependent on my mom 24/7. I would go over to give her a break so she could leave the house for a cup of coffee, some shopping, anything. Every five minutes he would ask for her and I'd tell him "She's upstairs on a phone call" which he accepted every time — until the next five minutes.

Oh, she’s been throwing fits all day over things that don’t exist.

1) I’ve sabotaged her and prevented her from accessing her online bank account. She’s never had online access to the bank account she’s referring to.

2) I shouldn’t be paying any bills because social security takes care of it all. No, that’s not how that works.

3) The pest control men sprayed something that is making her sick. There hasn’t been any pest control company and no one has sprayed anything.

I can tell today is a day she’s just looking to get mad at me and blame for something.

I wish my mother could just sit and watch tv and be quiet.

She doesn’t repeat the same question but she asks random questions every 30 seconds - 1 minute or has to make some comment that doesn’t make one bit of sense.

I can just feel my blood pressure rising. It’s like a little kid and I want to start a timer for 15 minutes. “You are not allowed again until this timer goes off.”

Sigh.

Try going through it with a spouse. It feels even more heartbreaking—while I’m sure it’s exhausting with a parent (and I had a parent who was beginning to show signs of it, but she died of a stroke first), going through it with the love of your life is on a whole other level. My husband is still in the early to middle stage, and, thank the Lord, remains his sweet, happy self and in remarkably good physical self, but it changes the dynamics of the relationship in painful ways. But I’d rather have him with me than lose him once and for all (and I know that day will inevitably come). But I’m determined to keep him home and bring in home care if and when necessary.

R97 this a safe space here. Tell us all about it.

I periodically search for this thread to remind myself that I'm not alone in this. About every 4th or 5th hour of the day (and night) my mother, 74, goes from reasonable, productive-ish, passive-aggressive, to raving, raging and irrational. It's terrifying, triggering and exhausting.

OP is Hunter Biden.

r99, might be time to get some help. My mother is this way, too only it's my asshole step father who has to deal with her. The other day, she started eating salsa from a bowl with a spoon. Not a big deal really but my step father yelled at her and made fun of her and she turned around and flung the entire bowl at him. Karma man. He spent his entire life being an emotionally abusive dick to her and she choose him over all her kids so we are all pretty hands off at this time. I guess she threatens to kill him all the time. He refuses to put her in a home and she won't allow anyone into the house (she thinks any woman in the house is having an affair with her 81 year old troll of a husband). My entire life she accused him of having affairs constantly so it's pretty par for the course. I feel bad for her that she's going through this with such a person who lacks any kind of kindness...but as my sister said, "Fuck it. She chose this."

You need to have her admitted to a memory care center.

Put her in a home as soon as possible.

I would put her in a home, but my step father is in charge of her care as long as he's alive and competent. It's his decision and he says he has no money to put her in a home and that he wants to take care of her as long as he can. He believes she will die if she goes into a home. I actually think getting away from him would help, but we have no power unless we want to take him to court and my siblings and I won't do that. If we lost, he would make it so that we never saw her again.

My mom developed Alzheimer’s in her late 80s and we went through everything the rest of you described. If it hadn’t been for my sister sharing the responsibility of caring for her, I’m sure I would have lost my mind. As it was, I came close to losing it many times. The kitchen fires, the wandering off into the street, the paranoia, the anger, the repetitiveness, the hours of vacant staring… it reached the point fairly quickly where I felt that almost nothing I did was the right thing.

My sister and I took turns staying with Mom for three, four, five days at a stretch. When my sister arrived, I’d usually go walk to the beach (just two blocks away) to try to clear my head. There were moments when I thought I’ll load my pockets with rocks, walk into the ocean and just keep on walking.

What’s my point? I’m probably just venting. Mom died three years ago but I haven’t fully recovered from the whole ordeal — mostly, I suppose, just watching her turn into a barely living vegetable before my eyes. It was horrible.

My point, to the OP’s question, is about coping. For me, coping was about recognizing the seriousness of the situation and giving into the practical over the desirable.

For example, we tried so hard to get Mom to eat well. But not only did her already small appetite almost disappear, it got to where she would only eat junk. Hershey’s kisses. Cool Whip. Just by itself. Coping means realizing that you cannot fight on every front. Accepting what you may not have found acceptable in the past. Recognizing you’re human and have only so much energy.

Like others, we did our best to enlist help. But it was unpredictable when Mom would rail violently against a kind stranger and sometimes bringing in help made things worse.

OP, maybe others will be horrified by this but I really think you have to lower your expectations of what you are capable of. We live in a country that has no meaningful support, no systemic support, for people in your situation. You need the skill, training, and resources of a professional social worker to do everything people suggest you do. If you have all that, lucky you. Most of us don’t.

OP, I wish you well. Go get a good massage. With some MT and a HE. Sending you a hug.

I wouldn't put up with it.

You should say, "Stop that forgettin' shit right now!"

Hey, my step dad is posting here! ^

The stories about personality changes remind me of a mildly amusing story. My grandmother was originally from Tennessee and was, at heart, a quiet, kind southern lady who would never say a bad word to or about anyone. In her last years, she developed dementia, and personality changes set in. She couldn't STAND having a caregiver in her house when my father finally hired one, and she let everyone know it. She screamed and yelled and demanded that the woman be sent away. My father finally gave up and said he would take the caregiver to the train the following day to send her home. My formerly demure grandmother muttered, "If she lives that long......" I can only imagine how mortified my grandmother would have been if her former self could hear her threatening the life of a caregiver. (Grandma went into the nursing home the day the care giver left, and she was much happier there for the few remaining months of her life.)

Ugh it’s gotten to the point where I just about have to operate the TV for her as she can’t handle the remote. She has trouble turning it on and controlling the volume.

The problem though is she acts like it’s an emergency. She will call me on my phone pleading with me to fix it instantly. I’ve been exercising boundaries more and telling her no.

Both my parents have dementia. My mother is like yours op, your father is right, just fo everything to keep her happy, its all you can do really. I bring my mother flowers and candy on the regular. It makes her very happy. It will be a shock to you to see how fast they go downhill, make her happy while she still can be aware she is happy.

Just checking in. Things are almost exactly the same. Right now I’m just tired of my mom asking stupid questions for an hour straight.

R15 here. My mother passed away from dementia a few months after my post, which was classified on her cause of death as natural causes secondary to Alzheimer's disease. I fought and questioned that while she was alive, to no avail. I was pretty pissed when I saw that on the death certificate.

Hope all with parental dementia issues on this thread are hanging in there.