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

There are all sorts of ways to explain to your mother, for example, why she is finding certain tasks difficult, why she may be feeling down or anxious, why her surroundings or events seem strange to her and so on, *without* having to spell out that she has dementia.

[Aside: if you think you already know what the limitations will be for your mother, or as you put it "what's coming," perhaps you aren't the right person to explain dementia to her anyway. Nobody can possibly know at this stage in what way(s) she will be affected or exactly what course her particular disease will take. Assume nothing! - and for heaven's sake do not disable your mother by deciding on her behalf that she can't do X, Y, or Z.]

You can: wait until she asks, then give her truthful answers worded in a way she can comprehend. Draw her pictures, show her diagrams. Share information from, for example, alz.org which is designed for people living with dementia and will use appropriate, comprehensible terms. Encourage her GP/other doctors to be truthful and ask-then-trust them to be sensitive. Nobody's going to say "you're losing your marbles, love. You're doomed!" They may be able to explain to her that Disease X is affecting how her brain controls Task Y, and perhaps in a health care setting she'll be better able to focus on what she's having explained to her and ask questions of her own.

Important: the brain disease that causes dementia can also have serious impacts on mood in various ways. Ask her lead doctor to keep her anti-anxiety medication under review to ensure it's the right drug in the right dose.

Remember, you do not have to solve this problem all at once. It can be a varied conversation over time, dealing more with practical concerns than understanding of the disease as such. E.g. "I realise how hard it is for you to gauge how long it is until I'll be home, and we don't want you to worry for nothing. So I've recorded a message on my cell phone reminding you to look at your clock and that I'm usually home by six. Would you like to hear it now? - we can play it back and make sure you're happy with it."

The repetitive questioning, clinginess and - just sometimes - frankly bonkers demands of a person entering on dementia can become incredibly stressful, tedious and frustrating. Do not blame yourself for minding this!

I'm glad you have this trial coming up, and I hope it goes really well for both of you. Keep in touch, hugs.

I tooootally feel you on this! I’ve been solo w/my parents...sibling has been awol.

The care home trial is a blessing and if it’s a good one your mom will have kind people around her. My mom leans on me emotionally a LOT and says no one calls or visits which is a) not true and b) when walking around her facility/grounds people say her name and greet her. She is further along than your mom I think, but I’ve found the word ‘pre-arranged’ to be kind of a magic bullet. Like, “ Oh, no worries, your accomodations tonight and meals are all pre-arranged.”

Mom also has had a stroke and seizures, so different situation from yours, but when she mentions her memory I tell her it’s from the stroke & seizure. Which is lousy news ( and given over and over and over ) but she genuinely appreciates the info. I don’t blame the dementia/alz itself. This seems to work..if your mom starts to wonder about is there another physical issue you could pin it on?

Best of luck to you!

Well, she’s unlikely to remember the limitations after you tell her, correct? And a diagnosis of dementia is scary-it will not get better. If she has a history of anxiety, reminding her of her diagnosis and future decline will only serve to make her anxious, which can increase those behaviors she’s exhibiting. She may not remember the specific information shared, but will hold on to the anxiety. I agree with her doctor. If she asks for a reason, you can just talk about the limitations in the bland terms of ‘memory’ getting worse and move the conversation along.
A lot of the new behaviors are related to the decline…you are her one constant, and so she’s keeping you close. She may have lost her executive ability and so now can’t initiate anything, so this looks like apathy. It’s not just her memory that’s affected, and she may be having more deficits than you realise. A move sooner may be beneficial as her coping skills may still be intact and she could adjust better. Be aware that it may take 3-6 months for her to settle in at a new place, because her short term memory may be shot—routine and repitition will help her lay down a daily pattern and releive some of her anxiety caused by not being able to remember anything.
Have you read this? Very helpful.
http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
You may also want to go to here as well, lots of input from folks experiencing similar things.
https://www.alzconnected.org/discussion.aspx

You aren’t alone!

Most people that are experiencing mental decline, realize it themselves and don't need to be told. And it can be very upsetting to them when they realize that their brain is not working like it once was. Usually that is early on in the decline, and as things progress, and they get further into the decline, they are more oblivious to it, and someone trying to explain it to them at that point really is useless, as they won't retain what is being told to them.
I'm sure her Dr. told you too, that depression is a leading factor in causing dementia, so hopefully her depression is well treated.
When my husband was diagnosed with vascular dementia(the most aggressive with a life expectancy of 5 years) in 2018, I chose not to tell him, as I saw no purpose in him having to have that in the back of his mind. Instead, we focused on making the most of each day, and as hard as it was some days, I wouldn't change a thing, as I lost my husband in Sept. 2020.
I hope and pray that your mom will like the facility she will be trying out, as it's important that you get to continue on with your life. Just because you're an only child doesn't mean that you're responsible for your mothers care. You have a life to live too, so make sure you are doing just that, as you're not getting any younger either. I wish you both well.

My thought? DON’T TALK ABOUT “DEMENTIA”.

The “limitations” will be addressed by your are sites staff.

Knowing “what’s coming” will not carry the meaning youare hoping it will, if she is already confused and forgetful.

I’ve been “the only child” twice, first with my mother, and now with the last of her sisters. It is brutal, but I will tell you honestly, there is often NO SHARING OF RESPONSIBILITIES , whether there are siblings or not. And sometimes a sibling is MUCH more trouble than dealing with just the parent.

What you are “feeling” is doing her no harm, but for your own good, find a sympathetic, non involved listener and talk it through.

Everything you describe is Dementia. They know something is going on they just don't know what. They get needy because you are one of the constants in their lives. And yes, it nerve racking. I can't do needy. I don't like being the person they depend on. I don't want to turn around and find someone right there. That goes for kids and animals, too.

"She is now very lonely during the day but too apathetic to do much about it." She can't do anything about it, her mind can no longer sort things out.

I think your "trial period" is a good idea. You may be asked not to visit too much. You need to allow the staff to do for her and she needs to learn to depend on them.

The challenges that you mention are illustrated in this Teepa Snow video.

https://youtu.be/u5QMeQpkPhA

It’s only a few minutes long, and will help you understand why this is all feeling bonkers to ya.

In your area is there an adult day care that she can go while you work. This way she isn't alone and has opportunity for socialization. Even if she doesn't know what's wrong, she knows something is going on and is probably feeling off kilter and afraid.

It's good she is willing to give the care home a try and I hope that works out for you. Good luck.

You don't tell them they have dementia. They don't belive you, and they won't remember and will become agitated.
Check out care facilities that offer respite.

My PCP and I decided not to tell my husband he has dementia. He has been our doctor for over 40 years, and he knows my husband very well. When my husband gets grumpy because he can't do or remember something, we blame it on the brain surgery for the sub-dural hematoma.

My Grandma had dementia and when my Mom, who I care for and has dementia as well, asks what is going on with her...during moments of self-awareness. Or when she gets mad at not being able to access information or do certain things.
I simply tell her she's not "stupid" or "lazy" or "crazy" whichever upset she might voice. I tell her she's demented. She sometimes asks me what that is and I explain it is brain damage. Damage doesn't make you stupid it makes you "damaged"
Sometimes my Mom will say "Like my Mom had?" and I say: "yep". Then she calms down because she has (for the time being) a point of reference.
But, my family is pragmatic and straight forward.

Early on I was matter of fact with my mother when she got frustrated or said what’s wrong with me, why can’t I remember? I would tell her she has what’s called vascular dementia, which is a result of the TIAs and a couple small strokes she had over 6 years ago. And that because if that, her brain just doesn’t work as well to remember or tell her body what to do. That pacifies her. This is repeated at least once a week and she’s less upset.

I did not use the word dementia. The neurologist told me initially my mother's MCI wasn't true dementia; she still thought well but her memory problems meant her brain didn't always have all the information it needed to make the correct decision. We spoke of things she had or could have had problems doing. I asked her to stop driving because if someone hit her, she might not remember what had happened when the cop showed up to write the police report. I made a page with checkboxes for her to note certain daily tasks had been done. She remembered how to brush her teeth or made a complex dish, but she couldn't remember with ingredients she had already put in the bowl. Housework chores you could see needed doing, like washing the dishes or clothes, she had no problems keeping up. Eventually, she began to display true dementia behaviors but by that time she wasn't very aware of them. When she asked me every 5-10 minutes if she could stay at my house for an hour at a time, she wasn't aware she was re-asking the question. I just tried to get her talking on another subject. Once someone gets to the point the dementia is readily apparent, I do not believe calling it dementia and talking to the person about their disease is very helpful.

Mom found a lot of contentment with adult day care (ADC). She was resistant to going at first, I think sticking with me was her default setting at that time; I became her security blanket. Within a few weeks, she looked forward to going and spending time with all the other "folks" she saw there. Mom enjoyed going for drives past her childhood home and neighborhood as well as the parks where kids were playing. She loved singing and music and we often had a sing-a-long; singing would calm her when she was having difficulties. She loved to be touched and have her lotion applied all over.

If you plan on continuing working, I strongly encourage you to place your mother in memory care (MC) sooner rather than later. She will adjust better when she is higher functioning and the MC will be her normal when she declines. She will also benefit from social interaction. You can visit her daily if you want. When I couldn't care for her at home any longer, I planned to continue to visit my mother daily to apply her lotion and have a sing-a-long. If covid causes a lockup of the facilities again, I would try to bring your mother home again with an in-home caregiver.

My mother had vascular dementia. She was aware of what was happening but would say "I know I know that but why can’t I remember?" I would tell her, well, you are 92 years old and your brain is so full of information you just can’t fit anything more in there!

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.

"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.

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 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.

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😱

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.

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.

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.

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.

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.

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.

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.

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!

Really! Ask yourself would it change anything?

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."

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.