What are your experiences telling someone that they have dementia and how do you deal with an increasingly needy single parent?

Why would you even want to bring it up?
That's like telling a kid that they are going to die.
She knows that she is failing in many ways. Documenting it does not improve it.
What a wonderful thing that she is interested in a care home. Keep your fingers crossed. She may well say she doesn't like it so try to make the experiment last longer.

I don't know what being an only child has to do with anything. Keep in mind that she likely made YOU the focus of all her energies at time for many years. I am not an only child but I took care of my parents and I was privileged to do so. I hope you will find a good place for your mother with a good and caring staff.

First of all, don't tell her she has dementia. She will deny it and get upset. Instead say it is normal and natural for aging people to "forget" or do things "differently". Find the opportunity to "talk up" a facility for friendship, companionship, all that stuff as you need to work at your job (I assume you have one) and you need peace to know she is cared for. Show her love as much as you can but the least you say, the better. Try to move her soon and be aware that the adjustment period does NOT happen overnight - it will happen but it takes time. Check the places out BEFORE you place her. And then you start living a normal life again.

Thank you all for your advice, suggestions and for sharing your experiences. This forum is a life saver.

Michael67: Imho, even if you were to tell her of her dx, her brain may no longer possess the capacity to recognize it.

She has other issues that already limit her abilities. Telling her about dementia is not necessary - it won't help her 'handle it' better - useless info for her. Leave that discussion out. Right now her only limitations are the other medical issues. Since she is considering the care home, go with it. She will be around others and more engaged than she is now. May help with some of the other med issues just to be around more people, activities, etc. Let that move happen and encourage with all the things the facility offers. Go there to be sure she is getting out of her room, with you, and involving herself to meet others, engage.

As for being an only child - even in large families with siblings, the caregiver person who stepped up to the plate is, more often than not, an only child when it comes down to the work.

Yes if she is sensing a limitation or change in herself then it ramps up the anxiety. Sounds like if those meds aren't working then she needs those adjusted.
If you feel the need to tell her about dementia- think about why- it isnt like she can prepare herself. Actually i think your preparation is more helpful- get a plan. Get resources and know what is coming and what more services she will need.
Is there a senior day care or senior group she can attend during the week so that you are not her only chance for human contact?
Can the dr advise if a health aide is possible to come in to be with her? Is it possible to advertise for a companion like college student intern in health field who may visit her for a few hours, or a church that does senior visiting?

I've been in the same situatio for the last 6 years but I don't have time for a relationship since I work over 64 hrs/wk on the R.R. and Mom is farther along than your Mom. Ironically, since your Mom is already agreeable to go into an ALF so soon; that is usually the hardest part of what we're going to have to decide down the road. As far as telling her she has Dem/ALZ, I'd advise against it. It will worsen her depression. It'd tell her that her Doc suggested that it will help her get better; like rehab; since you still work a lot and can't be there all the time. Other than that, I would definitely start talking to an Elder Law lawyer about getting Guardianship Care under way. While she's still "with her wits"; as Grandma used to say; it's best to do it while she still can understand the implications "IF" something happens to her and that you'll need to make decisions the way she would. All my prayers and God Bless.

you could tell her however she won't remember in the future anyhow so its like having amnesia (only in the future) so she won't remember that you told her back in the past. If she is taking meds for her conditions just let her know that you and the doctor are doing what they can but there are never any guarantees. Tell her the trial period will let her see how many others her age are there and she might enjoy it like a small vacation. And hoping that it goes well that she can adjust easily without any issues. But be forewarned, she will eventually beg to come home or want to leave (as the dementia progresses)....then you will need to rely on some old time "white fibs" indicating that the house is being worked on, or there is another issues that isn't good for her to come home at that time but might have to wait a little longer. And if she is okay being by herself for a couple hours, you will just have to let her know that you are going out for awhile but you will be back. And if that doesnt work, then you might have to get a "sitter" to be with her for the times you and your partner want to go out on a date. I am not single but don't feel guilty as no matter if single or not, people feel guilty at times during these situations. Make sure that she has all papers in place (Med POA, POA, will, living will, etc), even might not hurt to check with an elder attorney for anything concerning her finances, upcoming possible medicaid, etc. wishing you luck.

Lots of great answers from folks. Great that your Mom is willing to go to a care home. I second the advice of NancyIS on making sure all the paperwork is in order while you can. Luckily my folks got a lot of their stuff in order years ago, like the POA - we should have gotten a little more in order like bank accounts, but I'm working my way through that. And definitely talk to an Elder Law attorney if you haven't - they will be able to help you figure what needs to be done, including things you won't think of. And it'll help you feel like you aren't the only one dealing with it - you'll feel like you have some help.
As far as telling your Mom about the dementia diagnosis, I'd say it depends totally on where her memory is now. My Dad hasn't technically been diagnosed, but if he was I wouldn't tell him. He's at the point where he wouldn't remember anyway. He'll forget things that I told him 10 minutes before - and always forgets why he is a taking a memory medication and what it's for. (Ironic, right?)
If you really think that telling her will help her understand what's going on without making her depression worse that's one thing, but I don't know that it'll help her appreciate the upcoming limitations. You have to ask yourself if knowing that she's slowly losing her mind help her? You know her best.

I’ve heard of doctors not telling family members a diagnosis— if the patient doesn’t want them to know (as this is privileged communication), but it is unfair, and seems unethical, for the family to have information when the still cognizant patient is uninformed about their own condition.

I would look for a new doctor, get a second opinion, and get a review of her conditions and medications (to make sure these are not the cause of any confusion she is experiencing).

I believe for insurance reasons, medical providers 'usually' say its a 'mini stroke' - while I've copied some of the definition here, I encourage you to look this up - to learn more about it and then how to talk to your mom about what's happening to her.
* She still may not understand her limitations although supporting her to accept herself unconditionally by loving her unconditionally will hopefully hope.
* I tell clients that "I'm going through the same thing" - forgetting - while it may not be exactly the same thing, it is comforting to another to know they are not alone.
Gena / Touch Matters (see below)

A transient ischemic attack (TIA) is a temporary period of symptoms similar to those of a stroke. A TIA usually lasts only a few minutes and doesn't cause permanent damage. Often called a ministroke, a transient ischemic attack may be a warning. About 1 in 3 people who has a transient ischemic attack will eventually have a stroke, with about half occurring within a year after the transient ischemic attack. A transient ischemic attack can serve as both a warning of a future stroke and an opportunity to prevent it.

I'm an only child too and I understand how stifling this can be. I would not broach the subject with a scary medical diagnosis. Just tell her she is getting forgetful and you'd like to see her make friends and be in a safe environment for when you are not home during the day. Research shows that people who go into Assisted Living can slightly slow down the progression of the disease because of the companionship and help they receive. I believe the isolation can accelerate the progression. By placing her in AL, you are removing dangers like the stove, how to work the washing machine, cleaning up the house, and the risk of her wandering off. This will free her mind so she can relax and make friends.

Pick a place that is close to you so you can assure her you will visit. Also, at first maybe you can take her out once a week, take her to dinner or to church. This way she won't feel like she is locked up, and she can still live a normal life.

Yes. I am an only child and I am trying to get her moved into a facility. It's so draining.

I see no reason that you should tell your mom she has early dementia.
When you're aging, everyone starts forgetting things.
And dementia progresses differently with different people and it can be years before she's really effective enough by it to need Caregivers.
Soutdated like it would be a great idea fir her to live in her own apartment in Assisted Living.
She would have plenty of people around that she can make friends with.

Find one that offers plenty of things to do, one that has a special room that they can go to to hang out with others.

She'll enjoy not having to cook and she can go to the Dinning Room to eat.

She won't be counting on you as her only friend.

LIke you said, you work and are in a relationship.

Tour a few places and let mom pick one out to live in.

Or

Find a Senior Day Care that she can go to a few days a week to meet people and make friends.

They are there for lunch,games, crafts.

Onice she meets people then they can come over and visit and she won't be lonely.

I think it is totally irresponsible for doctors to not tell their patients they have been diagnosed with dementia. Why lay the burden on the loved one?

I waited over three years for a doctor to spell it out for my husband and none of them did. When my husband was faced with a surgery he did not want but was struggling with whether his "wants" should be outweighed by "what is the right thing to do" I finally told him about the two different dementia diagnosis because going under anesthesia would not have a favorably outcome for him. He needed that information in order to finally feel okay about his decision.

It should not have been on my shoulders to have that discussion with him. His pcp or neurologist should have explained his diagnosis to him, discussed what the future holds, and provided us both with direction for support services.

So to Ricky6, I say, "Yes, it changes things."

Really! Ask yourself would it change anything?

My 91 year old mother has also been diagnoised with early stage dementia, and I too, am her only child. She lives with my family of hubby, 2 grown daughters and 3yr old grandson. It is very trying and our home dynamics have changed drastically since we had to bring her in to live with us after she suffered a fall at her home. Mom is forgetful, accusatory (of everyone but herself), emotional, moody and and suffers from what I call "victimization" or always feeling like she is the victim no matter what the scenario. I felt the need to tell her about the dementia so that she could understand why things were happening to her (such as forgetfullness, etc). i think that discussing this with an elderly person depends on their emotional stability in receiving it as well as the doctors' advise. You have to do what you think is best for your situation. Fortunately you are financially able to look into seniors living arrangements for your mom. We can not take on that financial burden, especially since my mothers income is not sufficient. Thankfully God blessed us with the means and a home large enough for everyone to live comfortably. But I will say this......everyday is a real challenge!

Having read your post I feel the real question is - should I tell her in case someone in the care facility does?
This is a hard question. I am inclined to agree with her doctor and say don't tell her. At least not at this time. If she is able to try out a facility and it works out well, meeting people may help with her depression (which may well be mainly a result of the anxiety - so finding the cause of that and treating it might be more effective than treating the depression).
If she is less depressed and has been mixing with other people, some of whom will no doubt have dementia, then that may be the time to tell her, when she can see that others are still living good lives and getting enjoyment from life, so it is less to "worry" about.
I know that is a sort of ideal situation for dealing with your question, and it wouldn't be right for everyone, but telling someone they have dementia is such a personal thing for them to process one has to some extent to play it by ear, and you know her best.

It depends on the person. Everybody is different. Some people don't know that they have dementia. They think everything is OK. And in the early stages, much is still possible for them. If she is open to the idea of going to a care home, look for a home that has several levels of care, so that if her dementia gets worse she won't have to keep moving to another place. Moves are difficult for older people, especially with dementia. If your mother moves to a senior facility, this would probably be the best solution for you and her. Learn as much about dementia as you can so that you know what to expect. If she's a wanderer, she'll need to be in a locked facility with 24/7 care and observation. Her condition can get a lot worse, to the point where she can't do anything for herself and needs to be fed, bathed, taken places in a wheel chair, etc. You won't be able to handle this kind of care by yourself with a full-time job. Her options will depend on her finanancial situation (and yours, if you will be helping her financially). Get connected with a social worker in your area who can advise you on all of her options. Make sure all of her paperwork is in order while she's still mentally and physically able to sign legal papers. She'll (and you) will need an attorney if she has assets (like a house). She needs: powers of attorney for medical and financial decisions when she is no longer able to make her own decisions, a living will so that you and her doctors know what her medical directives are, a will if she has assets, you need to be on file with Medicare and Social Security so that you can speak on her behalf, many financial institutions have their own POA forms (banks, etc.). If she moves to a senior residence, it's best that she not take valuables with her, and have all of the financial statements sent to your address (or set up all of the accounts online). My mother was willing to make her bank accounts joint, which makes things easier. Get a credit card on her account with your name on it, if she has a credit card account.

My mom has Lewy Body Dementia..We chose to tell her. As a family who has lost numerous young family members we agreed to always be transparent and never hide diagnoses from each other. Mom knew for 2 yrs something was “wrong with her brain”. She would say “My brain is so foggy today”. She finally got an answer to the weird anxiety provoking issues and when she has a hallucination she will ask me “was it real or did my brain make it up?”. Knowing what she has has relieved her anxiety. Some days a voice speaks to her…she uses techniques I suggested to tell him to stop. He no longer upsets her. On bad walking days {Parkinson like symptoms with Lewy}…she knows tomorrow most likely will be better. At 87 she has told me what she wants done in the future if she has another 8 month mental collapse. I reassure her I am always here to keep her safe even if she can not. She helped choose her Assisted Living facility. She loves it there. I found mental health counseling for me helped me to accept this new normal and life is good again.

For what it's worth, my 94 y/o mother has moderately advanced dementia & STILL doesn't believe there's anything wrong with her at all. She lives in a Memory Care AL and it's 'the others' who are 'stupid morons' and other ugly names, but she's just dandy. No matter what you tell a person with dementia, they either won't believe it or they will forget it 10 minutes later. So what's the point? If your mother is truly in the early stages of dementia, she can probably qualify for regular Assisted Living vs. Memory Care and then segue into Memory Care if/when the need arises, that's my suggestion. Keep her OUT of Memory Care for as long as humanly possible. Really, who knows 'what's coming' and telling her what you think may be coming is an exercise in futility and can scare her for no good reason.

I'm an only child as well and have plenty of resentment for being the only person on earth to deal with my mother (and my father, too, up until he passed away in 2015) since I had to move them close to me in 2011. I think you and I are both fortunate in that our folks have the funds and the willingness to go into managed care, however, so DO make use of that service asap. That doesn't let you off the hook in any way, shape or form, though.........it only prevents you from doing the hands on care giving, which is good. Everything else will fall on your shoulders, as it does mine, yet you'll hear people say how you 'ditched your mother in AL and now have no worries or duties to manage whatsoever'. Which is a joke. I have 1001 things to do for my mother including managing her finances, trips to the ER which we just took this past week, talking to her doctors, medication changes, and a thousand other things in general. It's been a good thing and a blessing for my mother though, b/c she stays busy & there's lots of people to canoodle with and activities/meals/outings to keep her occupied in AL.

Wishing you the best of luck managing HER life and YOUR life at the same time. It isn't easy but you can do it, if you play your cards right.

I have said my Mom has undiagnosed dementia at the age of 89. It probably started a couple years ago back in 2019. 3 Nurses at NE Georgia Medical Center told me on the phone she has dementia. That was over a year ago. Then an NPC at Prospero Health told me she should get diagnosed for dementia My Sister in Cali wanted to be here for it. I've been my Mom's Caregiver and my Mom doesn't even recognize that?! Crazy. Out of this world. I'm going crazy if I haven't already. It's not right. I just have to say Lord have mercy.

There is no point in telling her. If you do the information will not be retained in a manner that will make sense to her. You will find that she thinks she has no limitations. She will try doing things that are not safe. Anything from getting up and walking to the store to climbing on a step ladder to get something off a shelf, turning on the stove and forgetting it.....

Have you tried to get her to an Adult Day Care program? Most are designed for people with dementia and are a safe place where your mom can get involved with activities, you get a break from her, she from you.
She will shadow you more and more as you are her "safe person"
If you can not get her into a Day Care Program I suggest that you hire a caregiver that will come in and watch her while you go out and have some time for yourself, get things done that are difficult to do when you take her with you. A doctors appointment, getting your hair done, shopping. It is important that you have time for yourself.

You have lots of good answers here regarding your mother. So I respond to your other question about resenting the situation you are in.
It's hard to bear this burden alone. And to have lived independently for so long and suddenly have to take care of mom is a huge change for you. So frustration is called for, but you should try to get over resentment. Not to be mean, but as an only child didn't you always understand that someday it would come to this point?
I am one of 5 kids and the only one that cares for Mom and Dad. Dad died last year of Alzheimers but Mom is fairly independent at 89 years young. She misses Dad terribly (married 67 happy years) and can be emotionally needy at times. And she is still time consuming. We talk every day, sometimes several times, she has lots of doctor appointments and I take her grocery shopping. When I go to movies, concerts, dinner etc with my friends, Mom often comes along. I'm lucky everybody loves my Mom and accepts her, but sometimes I want to enjoy my friends without her! But I admit I feel resentful that none of my siblings pitch in. I would love it if they invited Mom for a weekend, or came to visit. I can't even get each one to call her once a week. I would be ecstatic to take a vacation, but can't leave Mom for a week or two. It's maddening to see the facebook photos of all the vacations my siblings and their adult children enjoy but they say they can't spell me a week. Yes, I am resentful!
Your Mom needs help, but it doesn't necessarily mean you are the only one to do it. Many areas have geriatric day care to get Mom out and having social interaction. Hiring a caregiver can also offer you time off. Home Instead Senior Care offers companion services for people who don't need a lot of care but need some company. (This is the job I do.) You have many options, and if your Mom is open to the idea of moving to some care facility half the battle has been won.
Good luck.

I’m an only child and it is stressful for my husband and I. My mother has lived the past 35 years with us. She is rude and acts entitled. I tried a nursing home but COVID cases increased and they couldn’t watch her. There are no decent memory care unit in my area so we are left to deal with the burnt out of caring for her. I have my own mental health issues dealing with PTSD. I wish there was a better place to care for her. I’m exhausted and agitated when she does repetitive things especially since it appears she’s doing them out of spite😱

The answer to your question lies in this part of your post-- when you ask, "without knowing her condition she can't appreciate what the limitations will be for her".

The crux of the matter is this. When someone has dementia they cannot appreciate limitations about things that will happen in the future, because they can't remember what you told them. You cannot hope to reason with someone whose brain is no longer functioning properly. Obviously I don't know what stage she is in, but providing her with this information is not the same as when she was younger and in full capacity.

I'm so glad to hear you are organizing a trial period for home care. You're also lucky to be working and in a relationship; those will keep you busy and sane and unable to care for your parent 24/7, which is a GOOD thing.

Make sure that that trial period becomes a reality. Get as much help as possible and know that you are doing the best you can. That's all you can do.

My dad told everyone that I was an effing liar because I told him that he was diagnosed with dementia.

I agree with the doctors, don't tell her.

"The Doctor has advised me not telling her she has early dementia because this would burden her even further".

I agree - but I didn't always.. I always thought honesty was best.

If I knew my ankle was broken I could understand why I had plaster on, why I shouldn't put weight on it, why I had to use crutches, that walking around the city for half a day would be too tiring on crutches.

But if my brain has the problem..? I probably won't understand what this actually means. May make me worry & stress more. Even if it is explained, if I have memory problems I will forgot the conversation. I may lack judgement & planning ability, so make unsafe decisions. I won't understand why I need someone with me when going out. Won't understand a full day outing will tire and overwhelm me. Be unable to calm down or communicate.

You can have a short simple *specific* answer ready if she asks. Eg: your emphysema makes it hard. You need a bit more oxygen.

Since your mom has emphysema and dementia, she is likely to be anxious, have poor memory, and lack of energy for activities. It might be best to tell her that it seems her "breathing is worse" (therapeutic lie since many people with dementia deny they have a problem) and that she needs help from others during the day. If there is an adult day program in a personal care home of residential facility, that might give you both a good idea if she needs to be placed into assisted living or memory care unit. Adult day programs run Monday - Friday during the day. This might help take some of the burden off your for now.