My 74 year old mother just came to live with me because of her declining health. I have been researching her symptoms and I think she may have Parkinson's/Lewy Body Dementia, as she is showing many, many of the signs. I'd like to talk to her about this and get her to her doctor, but I'm not sure how to bring it up? I am very concerned, but I don't want to scare her either. Suggestions?
Now that I am helping her with her healthcare and working with her doctor, she has agreed to go. Hopefully, they can determine what type of dementia she has, so we can have a better understanding of what she is facing. I'm also curious to see where she's at with the disease. I know there isn't an exact way to determine this, but she is definitely not in the early stages. She has been having problems for many, many years.
It's stressful for all involved, but I'm glad that I can help her. Before she came to live with me, she was in denial about many things and hid a lot of things from her spouse, family, doctors and even herself. I do see her letting go of the denial a little bit at a time and accepting her situation. Maybe it's because she can't cover things up with me and make excuses anymore now that she lives in the room next to me? Maybe it's because she has my help with her healthcare and I know everything the doctors are saying? I'm just glad that things are changing for her and moving forward despite her diagnosis.
Whether to discuss it with her or tell her about it, if it really is what you think, would best be done after the doctor determines the actual cause of her symptoms and also whether she would understand. Some will deny there is a problem at all. Others will deny that's what it is. We don't know your mother, so we don't know how she might react.
I never used the "D" word around my mother. She was fiercely independent (in her mind), plus to her dementia meant you were "off your rocker", aka crazy. In her mind she was perfectly fine, nothing wrong. Her excuse for forgetting things? She's old, so she's entitled to forget once in a while. Problem was it wasn't once in a while! But, it was best NOT to correct her or try to convince her she had ANY problem at all!
Before the move to MC, we had to change docs (moved her to be closer to me, which was too far from her previous doc.) I needed a letter from doc in order to be mom's rep for her pension. During the exam, when the doc said "It's not safe for you to live alone", my first thought was Oh boy! Sure enough, mom went ballistic! We make no mention of any cognitive issues at all.
She's been in MC almost 4 years now. No one, as far as I am aware, has ever said the "D" word. Early on, she read an article in a local paper, written by the daughter of another resident. They included a picture of them together. A staff member told me mom went up to the other resident and told her that 'your kids put you here because you're crazy!' I was mortified that she did that!! Hopefully the other woman didn't get it or forgot it quickly. Thanks mom, how sweet of you... But, wait... did you not consider why YOU are living here??? That actually was kind of amusing.
So, provide doc with symptoms and concerns before any appt. Medicare pays for a "Wellness" exam, so just make an appt and tell her Medicare wants her to do this (it isn't a requirement, but she doesn't need to know that!) Let the doc examine her, do some testing, rule out whatever they can and go from there. It may take a specialist to Dx the condition(s) you suspect, but start with primary care doc. They can make the referral (perhaps you can pass any additional doctor appts, if you have to see a specialist, as just more special FREE Medicare perks.)
Do not even attempt talking about any condition you think she might have. First you might be wrong, second, she will become angry with you breaking off communication and working with her in future. It will cause her to be uncooperative with you and/or Doctor. Or she might refuse to go to a Doctor appointment or even let you go in with her.
I would calmly suggest it might be a good idea you go in with her for her upcoming Doctor visit, so you can ask and understand anything you should know in order to best know what is best for her, now and in the future. No mention to her about what you think she might have.
When my husband was first showing signs of Alzheimers forgetfulness, for some unknown reason I felt he had to admit he had a problem. Now that was not too smart on my part. If angered him and frustrated me. No win! When I stopped, it calmed things way down and I found him to be quite cooperative.
I now keep things going as if all is normal, including him, when it is by no means normal. But it helps keep things calm.
The drs do appreciate the heads up of the notes.
Dad’s neurologist was really good at being up front about painful things in a away that was both supportive and frankly honest. We followed that example. When dad would get frustrated with the BIG exercises or grouse about being reminded to sit deliberately rather than fall into a chair, reminding him to make the efforts to fight the Parkinson’s would often get him going.
When the hallucinations started, dad knew there was something off with his thinking. Prompting him that hallucinations are part of the disease helped him regain his perspective. He still suffered from anxiety and agitation when he was hallucinating, but it seemed like struggling to put them in context of the disease was better for him than giving in to whatever horrors he was seeing.
Eventually dad’s hallucinations progressed and he can no longer separate them from reality. Knowing how helpless we are now to help, I believe that being honest about the disease progression early on, having given him some sense of control was the right approach.
"More than four in 10 women over age 85 have some type of cognitive impairment, according to a new study.
The results show nearly 18% of women over 85 have dementia and 23% more have mild cognitive impairment, and the prevalence of dementia doubles after age 90 compared to women who are 85 to 89 years old."
Where did you obtain the figure you posted?
We KNEW what to expect and understood why he was struggling.
Good Luck. This is so sad. Life is cruel sometimes. Daddy didn't have LBD, but he was able to take some medications that helped.
The other thing is that she may not have much self awareness of the illness. Or at least my mother didn't. It was not easy to get her to agree to an assessment.
Delusions and hallucinations are common. We found it hard to get a diagnosis until it was clear that my mother was having these. After an episode of delirium the diagnosis of LBD was made in hospital.
Good luck with everything. x
I wish I knew more about the potential drug interactions, but trusted her Doctors with the decisions that were made.
I bet that she has been covering up for years.
No important discussion is easy. Just like the one she had with you about sex. Ya just gotta take the dive and go for it.
Good possibility that while she may be defensive, argue that it's not true, I bet deep down she might be relieved that she does not have to cover for herself
What is important is that she realizes that there are decisions that she can make now that will make things so much easier for her and you and the rest of the family in the months, years to come.
End of the year.
New location, maybe a new doctor. Time to get a complete physical. That is maybe the best way to start.
My brother was diagnosed with probable early Lewy's Dementia solely by his symptoms. He was willing to discuss it. In fact he talked to me about his hallucinations at nighttime, asking what could cause them. Does your Mom mention hallucinations to you. What other symptoms does she have. I am willing to discuss my brother's specifics but usually have my private messaging closed. It is open today; if you can PM me before midnight I will be happy to elaborate. She may be more willing to discuss this with you than you think. My brother said, before is death, he was glad to know what was happening in his brain, why he was having episodes and the ways in which he was seeing the world differently. Not glad to know what would be the long slow slide were he to continue, but glad to know. Do know that Lewy's of all the dementias can present as better and worse, like a stock market chart, whereas other dementias are more solidly progressive downward.
Meanwhile, be certain to get all paperwork, wills, POA done now while Mom is able to agree and understand what she is doing. My brother made me Trustee of his trust and his POA so I could function for him as he failed more.