In March of 2019 mom fell, passed out, no one really knows because she lived alone then, but she hit her head and received a major concussion. She had seizures. At the ER they told me she needed a pacemaker.
She was referred to a neurology specialist. She underwent some tests and was prescribed Aricept. Was told she shouldn't live alone anymore. Hired a caregiver who mom hated. Replaced her after 4 months with another who she also hated. She didn't want any strangers in her house.
The family was around more and really discovered that things weren't right. Before the fall she really didn't want anyone coming over. I realize now that she was hiding it and didn't want us to see and discover her secret.
This past July 4 weekend mom fell a couple of times, was very anxious and couldn't be calmed down. EMS took her to the ER. It was determined from her blood work that she had a heart attack. I let the caregiver go. I quit my job and have been living with her in her home, leaving my job, husband, daughters, home & dogs behind. :( BTW the doctor stopped her Aricept & Zoloft while in the hospital which she had been on since 3/2019.
I've been reading two books: The Caregivers Guide to Dementia and The 36 Hour Day. Both of these and what I read online say it is important to get a diagnosis, know what stage she is in and get a care plan.
Two weeks ago I asked her PCP what her diagnosis was and wanted to know what stage she was in and what to expect. She's deteriorated so much since July. He didn't give me a real answer. I wanted her back on Aricept and Zoloft and got push back from him. His response was that there is no clear cut test for dementia/Alzheimer's, the testing is several hours and causes stress. (yea I know because neuro tested her for 3 hours in August 2020 but told me she didn't have dementia.) and Alzheimer's meds aren't a cure and do little to help.
This is such a strange disease. She looks like my mom, sounds like her but she's not really in there. She gets an idea in her head and it's like she has no control over where it takes her.
Because I was up every night checking on her and seeing she was not sleeping I asked the PCP for a sleep aid. She was doing these manic OCD things for hours that I've never seen before: repeatedly making the bed, pulling the sheet, blanket & comforter up one at a time, smoothing out all the wrinkles on each then pulling them back down again, over and over. At one point I pulled all the sheets and blankets off the bed at 2 in the am and re-made the bed for her. It didn't help. She just kept doing it over and over. Of course I was frustrated and tired from no sleep on the 3rd night. I yelled at her that there was nothing wrong with the blankets and just get into bed. She did but once I left and closed the door she was back up doing it again. Each morning she would be sitting at the breakfast table asleep sitting up. Even fell over face first on the couch asleep. So I asked the PCP for a sleep aid which he didn't want to give her until I burst out crying in his office and showed him a photo I took of her where she fell over face first on the couch asleep, 10 minutes after breakfast. I had a video of the OCD bed making but he didn't want to see that. Just said that's part of the dementia.
He gave her the lowest dose of Aricept, no Zoloft, and Remeron 15mg. I also give her a dropper full of Valerian extract and 25mg of CBD before bed. She still stays awake doing weird things. However, I bought a door alarm so I know when she leaves her room. I can at least get some sleep knowing she's safe in her room but would really like for her to sleep too so I don't spend the day trying to keep her awake.
I really want to know what type of dementia she has and what stage and what to expect going forward. Suggestions on what I should be doing with her. What activities to keep her busy, engaged.
Thanks for reading all this.
THIS. Have you jeopardized your own retirement by quitting your job? You have surely changed your personal life! And you have a chronic disease, and your blood pressure is increasing.
These are all danger signs. You do NOT have to sacrifice your health and your life for your mother! When reading your interactions with the doctor, all that came to my mind was that as long as he knows YOU are providing care for your mother, he is not that concerned. You are not his patient.
Follow the advice of YOUR doctors, who would surely tell you that your life right now is detrimental to your health.
In another post, you write that your mother is on the list for a Memory Care? How are things progressing in your search? What is your mother's financial situation? Do you see placement happening after an event that lands her in the hospital?
Please take care of yourself. How many places is she on the waiting list for?
I think what you need to realize is that Mom needs more care than you can give her. She is passed an Assisted living at this point. If she has money maybe Memory Care. If not, then Medicaid in a nice Long term care facility. Your family should be #1. Mom is going to continue to decline.
My mom hit her head pretty good in 2011. Had a concussion. She had shown some signs of decline prior but the head injury seemed to make her worse. She lived in her own home with my nephew for the next 3 years. A hospital and rehab stay brought her to my house for the next 20 months. When her house didn't sell, I took what money she had and placed her in an AL. Her decline continued money ran out so I had to transfer her to a nice NH. My Mom passed Sept 2017, 3 years after she came to live with me, 6 yrs after she hit her head.
He also told her no more driving and arranged a driving evaluation when she protested. He also provided a letter of competency which has been important for me to be able to use the durable power of attorney.
She was having more issues over the previous year but she went from living alone, being mobile,lunching with the ladies,in the beginning of 2018, to now being wheelchair bound in Memory Care; she never recovered her strength and mobility after a bad fall and hospitalization last year. She still usually knows me, but sometimes calls me her mother, and doesn't remember she is a widow or that her parents and sister are deceased. She sometimes thinks she is at school or work. Having more issues with finding the right words to use.. Just not in reality. Her 91st birthday is next month
So my suggestion is to find a neurologist that specializes in dementia. But I wouldn't focus so much on stages and timeliness, everyone progresses differently. My mom was always a worrier, and a big planner, you should have seen the details on her calendar. So now her anxiety is supercharged, and she can't remember details, so she is always asking what is next or if she has an appointment. She's always been fiercely independent, so having people tell her what to do, or help with personal hygiene has been a huge problem. She bit a hospice bath aide last week. She is on anti anxiety meds and sundowning meds but it's still a struggle.
Yet others in the Memory Care unit, have different difficulties. I truly believe that personality or stressor such as falls or illness make a big difference in progression, as do what part of the brain is most affected.
Getting a diagnosis is useful, but I don't think you can set a timeline. The social worker was great at that office, I've called and cried in her ear or by email multiple times. Take care of yourself too
I went through a time of wanted to know a 'label' but have since found dealing with the practical affects serves us better.
I am so sorry you feel so let down by her doctor as they are not listening to you. I would ask when her last bloodwork was and look it over - but I can only tell you from my experience that a UTI can be a game changer to severe decline and the behavioral changes. You may have already checked but if not - this would be my first go to advice.
Then get a new neuro as well as neurophysiologist for testing. 🙏🏼🦋
You MAY get a definitive diagnosis from a neurologist, if that person can narrow down the specific kind of dementia.
As to the second part, a doc won’t have time to get into all of that. And, they certainly don’t provide day to day support.
You can begin with just typing in “dementia” in the search bar above. LOTS of questions and discussions will come up.
There are also dementia questions asked here every day. Many posters are in your situation, and have much wisdom to share.
Another huge help will be watching Teepa Snow videos on YouTube. She is a compassionate dementia expert.
Best wishes.
The last time I read it up, the ‘truth’ was that medication could help slow AZ if taken in the early stages, but clear diagnosis could only be made at autopsy when the ‘plaques’ in the brain could be seen. The problem can move fast or slowly, gradually or in sudden steps, and you don’t know in advance – so the doctor might believe there’s no point in guessing.
Whatever is going on, this doctor’s approach is not meeting your needs, and so is not helping the patient either. You are going to need a doctor for a long time, so find one who is a better fit for you. Make sure that you have a HIPPA consent in place, so that isn’t an excuse for keeping you in the dark!
I would find another neurologist or a Neuropsychologist.
You can not continue the way you are. You need to begin to look at Memory Care places for mom.
You NEED to get back to your family, your life.
Double check with the pharmacist if the herbal/OTC medications you are giving her are alright to be given with the prescription medications she is on;.
I read your profile - you cannot maintain this level of care AND take care of yourself, not to mention your family. And it seems to me that this doctor is all to happy maintaining the "status quo" rather than work the problem. While there is not cure for Alzheimer's - that much is true - there are things that can be done to help both the patient AND the caregiver. His response about no clear test and Alzheimer's medications sounds like a great big cop-out to me.
Bottom line - you should not have to "demand" a diagnosis from any doctor - that's sort of their job. It would be akin to "demanding" a firefighter put out a fire.
If I were you, I'd find another doctor in a big fat hurry; I would start making phone calls to find one that specializes in dementia and Alzheimer's disease, one who might actually be able to provide mom and you with support and answers.