We have an appointment to get my mom's MRI results in a couple of weeks. There is always the possibility she doesn't have dementia, but all signs point to a form or forms of it. One of her symptoms is anosognosia and with that she believes that her doctor told her that she is so healthy he never has to see him again. She fights us when we have to go (we have been eight times in five months for bloodwork and results while her doctor refused to believe that was something was not right) and she doesn't remember any of those appointments.
I am dreading the day because if the results are what I think they will be, it means I can't have a glimmer of hope for a different outcome anymore and I'm also afraid that if she understands the diagnosis it could cause her to get worse quicker.
I would very much appreciate it if some could share their experiences of day of diagnosis, and best advice on to how to support your loved one on that day (especially if your loved one has anosognosia).
Thank you in advance.
((((Hugs)))) and deep breaths, first off.
You are at the beginning of a tough journey. We are here with you.
I can only share my experience with my mom. Her PCP saw NOTHING wrong with her; we finally got her into a nice Independent Living Facility. The wonderful geriatrics doc there saw her and sent her immediately to see a geriatric psychiatrist.
Who called me and insisted that mom needed a neuropsych eval. (We all kept saying mom was "sharp as a tack".
The neuropsych and the accompanying MRI showed that mom had had a stroke and now had Mild Cognitive Impairment. And, the way it was explained to us, she couldn.t reason her way out of a paper bag. (It made the anxiety understandable).
The thing is, the doc, in explaining this to mom said "you shouldn't live alone any longer. You need to have people around you all the time so you have help if you need it. You need a better diet than you've been eating at home. Cooking for one sucks, right? You need more activities, more stimulation, more access to transportation on your own."
Mom agreed with all of this. The parts about what mom's deficits were, she didn't seem to hear.
Can you talk to the doc ahead of time and find out what her/his approach is in this kind of situation? I think we were very fortunate that we had a team that did a lot of these "Informings".
Dementia is a sneaky, gradual disease so your Mom probably is at the beginning of the sliding scale of this illness. Your homework will now be to not fret about what hasn't happened yet (so you don't overwhelm and exhaust yourself) but to educate yourself about her diagnosis so you can have more peaceful and productive interactions with her. It's going to be all about problem-solving now, and this forum is an excellent resource for that.
I wish you clarity, wisdom and peace in your heart on this journey!
Since you ask I will tell you my own story.
Reassure her that you will not abandon her, that you will help best you can to keep her safe. Much as with our children, that is what they want to hear. That you will be beside them whether they are in care or whether at home, whether near or far. That you will face it together.
My brother was diagnosed after a serious accident with his truck in which no one but him was hurt. He was delivering his refuse to the large refuse container in his complex and he ended up driving his pickup back and forward between massive container and a huge palm, each time smashing his own head on some window. I lived in No. Ca while he lived in Socal, and I got notified by a hospital that "incidental findings" indicated that my brother had probable early Lewy's dementia, diagnosed by his symptoms. When I visited he told me he "knew something was wrong" and I learned firsthand about symptoms he had been choosing to ignore.
Once diagnosed my brother said he sure didn't like this, but he WAS glad he knew why he saw the world so differently, as it had been worrying him. And knew he had to get his world in order for what was to come. Asked me to be his POA and Trustee of Trust, and we went to the attorney together to get this done. Went to DMV and turned in license and got ID card. Sold his last little home. Chose an ALF after he decided he wished to remain a Socal boy. We did this together over a year and sat often and discussed his symptoms and what he was going through. He had always been an ordered and orderly man who lived somewhat like a monk. He said being in the ALF was a huge adjustment for someone socially a bit anxious, but said "It's like when I was young and in the army; I don't necessarily like it but I make the best of it". He adjusted to walks on the grounds, and picking roses for the breakfast tables. People would bring him vases to use.
Before his dementia could progress markedly (in fact his hallucinations were fewer once in care, once all bills handled by me, once no worries of any kind) my brother died of sepsis. It would have been what he wanted. He and I are/were both bit control freaks and greatly fear/ed loss of control. He often said he wished the accident had taken him so he didn't have to suffer the loss of himself.
Sp that's my story. I think that I haven't ever seen anyone take such a diagnosis so well. People vary greatly in dire diagnoses such as terminal condition and dementias. I wish you the very best, and your Mom as well.
My LO was aware for some time that his cognitive skills were failing. When his PCP diagnosed dementia, it was handled well. The doctor said, "These dementia symptoms you're having can be traced to silent strokes that you had in the past. You've taken good care of your health and are physically fit for your age. You're getting treatment for the things that are wrong with the rest of your body (joint stiffness, thyroid issues), but we can't heal your brain. Isn't that sad?" LO agreed that it was sad, and the conversation moved on to medicines he could take to help symptoms. It was handled in a matter-of-fact way, and LO no longer remembers the conversation. He is very aware, though, of his continuing decline.
Try not to dread the day. The doctor will know how to handle it. I doubt that your mom will remember much about diagnosis talk, which can be kept to a minimum on that visit. You can follow up privately with doctor later. The nitty gritty of what will happen next is not necessary at that time. Also, I doubt that to know a diagnosis will make her brain issues get worse. The progress of the actual disease happens for other reasons, such as amyloid plaques. Depression, however, is another thing, and there's medicine for that.
Eventually a situation where someone else takes care of her is the best option. You'll have plenty to do even in that case - advocating for her, overseeing her medical issues, making decisions on her behalf, bringing her and the aides special treats. Just those things can be all-consuming. Good luck to you.
....Fawnby
The day of her neuro-test I brought a big fancy cupcake for us to sit and share afterwards over tea. Sharing fancy cupcakes with her became my go-to when I was upset with her ( not without reason usually! ) So we had a decent and yummy activity for after the appointment, I think that helped both of us, really.
Also, assuming dementia diagnosis, make sure they write it down in her chart!! I had to follow through because they did not. I also found out that people don’t READ the chart so I’ve had to remind the medical folks repeatedly about her dementia. Despite being obvious to us, other people don’t know what they’re seeing. Especially if our dementia person showtimes for others. Having the diagnosis in her chart has been the most helpful aspect of that appointment, for me, despite having to remind folks…
My mother lived in Memory Care Assisted Living after transferring there from the regular AL building where she lived for 4 years. For the nearly 3 years she lived in Memory Care, she'd ask me what SHE was doing there bc nothing at all was wrong with her. The one time I told her she was diagnosed with dementia in 2016, she called me and her doctor a liar. So we were The Bad Guys and she was The Poor Soul for living somewhere she didn't belong. Until her dying day, she believed that.
That's what anosognosia looks like, in reality.
Good luck to you
I hope you've been able to take care of you again.
Do some reading so you know what to expect, if you haven't already. Does she still drive? If so, that is a tough one but it will have to be dealt with. I remember how mad my mom was when the doctor said she couldn't drive anymore!
Best of luck.
My mom no longer drives. Fortunately, she stopped herself a year before she was diagnosed. Though, I think it is because she may have gotten lost and realized something was wrong. It was missed sign, but hindsight...
Fortunately, my parents were good at saving so financially they will be OK. The one obstacle I was not expecting was my dad who hasn't been able to come to terms with the diagnosis, refuses to learn more about the disease, often doesn't heed my advice because he still thinks I'm a child (I'm 40 and haven't lived at home for two decades), and suddenly doesn't want to spend money. Luckily, the care manager has been able to help me navigate some of these issues and will talk to them when I can't through.
She missed the court order for appearance, and that was that. They took her license.
Do not mention dementia, do not argue with her, if you do, she may stop talking.. this happened too,
In home care, make sure you have appropriate home insurance. I knew a couple who lost everything to a caretaker. Because of that, they were put in a 6 pack.
good info on this website. Take care.
I am leaning towards in-home care and have been concerned with brining in a stranger or strangers. Your insurance advice is very helpful.
He only agreed to a mini cog test because he wanted to keep and give his own meds in his room at AL.
Well he asked and was told his score and what it meant and he “blew up”. He told us he threw “that guy” out of his room . He insists his “ mind is as good as ever”.
He refused any further follow up with a doctor . We no longer bring it up . It just causes him to dig his heels in more claiming he’s “ independent “ .
I have heard my mom tell her doctor that she's doing great and never gets sick when he asks her how's she doing. The "mind as good ever" comment reminded me of that.
The not bringing it up has proven to be great advice.
If your username came from having to care for your FIL through the disease, I hope you're able to find time for yourself and have support; or come through and have gotten respite.
Also, I have a brown tabby sitting my lap as I type this.
Thank you to everyone that responded to my question. Sharing your experiences and offering your support were helpful leading up to and after my mom's diagnosis of vascular dementia.
Surprisingly, the morning of the appointment, she didn't fight me about going to the doctor.
I'm torn on how the doctor handled it. He lowered his voice when he said the fateful words and quickly mentioned that his dad has the same form of the dementia and were in goods hands with him. He made the situation sound hopeful; which was not the right tone to me.
I was not as prepared as I thought I was for the appointment and missed asking a bunch of questions so I'm working on getting her an appointment with a neurologist (as was recommended by a care manager I hired to help me navigate things) in hopes of getting more details and better information.
My mom was in a good mood leaving the appointment and said that she gets extremely anxious about doctor's appointments (her previous reactions now made more sense to me). I told her that I understood, that I don't think most people enjoy going to the doctor but that it is important, and that I'm here to support her no matter the news we receive. By the time we sat down to eat breakfast at a restaurant about a 5 minute drive from the doctor's office, she had already forgotten about the diagnosis.
My brother told me AFTER diagnosis that he has suspected "something was wrong".
It took a severe accident with his truck to get an "incidental diagnosis of probable early Lewy's Dementia by symptoms".
He was told when I remained in northern California and told honestly and straight out. I flew to be with him in Hospital and rehab for a month and in that time we had visit from his attorney to do all paperwork such as updating advance directive, readying home for sale, making me POA and Trustee of Trust.
He had a lot of feelings to work through.He told me he wished he had died in the accident. We researched Lewy's and talked of his symptoms. We chose an ALF. We walked this walk as for a lifetime we had walked every other walk in the dark woods of life, like Hansel and Gretal hand in hand, me doing all I could for him. Him sharing all his feelings.
That was what it was for my brother, and for me.
Each case is completely different.
Even when honesty isn't fully understood I still recommend it.
Don't rob person of hope and whatever autonomy you can provide to them.
Reassure that you will BE THERE and will ALWAYS SUPPORT.
Do not negate their feelings. If they come out with "I would rather die" it is one you to say "I can understand how you feel; I hear you". NOT "Oh, you don't meannnnnnn that, Mom" because she does, and she will have enough/good and plenty of people denying her feelings from now on.
And that's about enough for first day.
And I will wish you luck. Do not forget to take care of YOURSELF. You aren't god. You didn't cause this and can't change it. And this is in many ways horrific for the loved ones who stand witness.