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

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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!

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.