I brought my dad up from another state and he was in bad shape, I have very little information . All the doctors just agree he has dementia and needs memory care. He has pretty bad behaviors but I really have no clue how far along he is or what type ???
Wishing you the best of luck with a difficult situation.
Have an evaluation by a neurologist or geriatric care specialist to clarify the type and stage of the condition.
Gather information about memory care facilities or home care options to ensure your father receives appropriate care.
Consider caregiver support groups to get guidance and support for yourself.
These steps can help both your father’s well-being and your own convenience.
The hospice nurse thought Parkinson's, which I had never considered, because he never had hand tremors, more like hand jerks. He was having trouble swallowing food and was drooling. He became wheelchair bound and couldn't sit up straight. But he did have shuffling when he was still walking, and that was a tell tale sign of Parkinson's which I never considered.
I did a lot of research so I could try to find answers and come up with my own diagnosis, but it seems his symptoms overlapped with many types in the last year of his life. So I let go of finding out the specific type. I just thought of him as having "complications from dementia."
The hospice nurse who came in to evaluate my mom took one look at my dad and said he would qualify also! I was not expecting that. He died four months after being on hospice. My mom has now been on hospice for 5 months and she will be re-evaluated at the end of this month.
It's hard not knowing, but I freed myself once he was in hospice and I focused on comfort care.
Since no dementia has a "treatment" of medication that does any appreciable good for them there is really no need of a definitive dx. right away. But it helps to know in your daily planning and dealing with things, and a good Neuro-psyc exam can give you best guess.
Someone recently posted that their doctor said they would have to kill the patient to find out for sure. Sounded cruel as put, but truth is that they best know on autopsy what brain matter is involved. However, there are some tests that give information, and an exam tells an expert a lot.
Good luck. Learn all you can. People hate when others say "It's a journey", but really, ANY illness is just that.
After spending time with him & seeing all the different aspects of his symptoms & comparing it to charts online of stages, you can get an idea of where he’s at. His doctor or hospice (If they get involved) should be able to help get close, but it probably won’t be exact.
Dementia is an umbrella term and all some ever get by way of a diagnosis. I guess the good news is, the diagnosis of dementia often is enough to get needed services.
The geriatrician nor neurologist I took Aunt to ever referred to her as having Alzheimer’s but many of the less knowledgeable lumped her under that category. I know they didn’t do test but seemed to base their ideas on the fact that she was on memory meds and lack of short term memory.
As Joann points out some of the types need to be ruled out as some meds aren’t appropriate for them. Lewy Body for one. Do a little reading on that one.
The brain is a vast territory with much to be discovered even though a great deal is known. We get annoyed with doctors who don’t know but in a way, it is refreshing when they are honest. Medicine is not an exact science. Exact science is an oxymoron.
So, Brandyrae, even if you had been with your dad from the start of his decline, you probably wouldn’t know much more, if any, than you do now about his diagnosis. You might have been a little more educated by now in the realization that you will probably never know exactly what he has. We caregivers are in a constant learning mode.
Once you have him in care it gives you a little more space to accept that perhaps the best we can do for them is to see that they are treated with kindness and not neglected. That turns out to be quiet the challenge on it’s own. Or at least it was for me.
I used the ADL chart for many years and would note that she became increasingly unable to do anything for herself. Slowly but surely. That is one way you can discern the end is nearing. Regardless of diagnosis we all do die. Some manage to skip a lot of the decline if they have a heart attack or an accident etc.
Today is aunts birthday. She would have been 99. She passed a few months ago. She was so active all her life. I used to nag her about going up ladders and mowing her grass in extreme heat when in her 80s. She was dancing on her 90th bd. Went to the casino with her cousin who was a few months older the day after.
I was always telling her that she would die of an accident. Boy was I wrong.
Fast forward two years, she fell and hit her head; felt fine so did not get it checked out. Couple months later, she had gotten even more confused and anxious and the aides in her IL (Independent Living) facility called one night to say she was stumbling, couldn't figure out her phone/remote and they thought she should be immediately checked out. That's when they found a brain bleed. She was hospitalized and could not walk without help for several months. Couldn't remember how to sit on the toilet, etc.
She could not return to the IL, and we were blessed to be referred to a lovely, caring group home, staffed with 2 aides in the daytime and 1 at night - with 10 other residents with advanced dementia requiring a lot of care (fall risks).
Over the last couple years she got better and better, esp once we reduced her sedatives. She is back to her own personality, just very forgetful which leads to confusion and sometimes feistiness with her aides. She fell and hit her head again this past May and I noticed her walking, which had gotten very good, declined again, and now she does not object to the walker or holding an arm when she walks. She is now 92.
We had never returned to the neurologist but had to to get a letter for government assistance, and he could easily confirm that she could not take care of herself or make her own medical decisions. I asked him if there was anything else we needed to be doing for her and he said no. I told him people often ask what her diagnosis is and he said yes, people often want to find a treatment, but in her case there is nothing to do. Which was good to hear that we are doing the right thing. He also said that in the case of a head injury, it takes elderly folks a lot longer to bounce back than young football players for example.
All that to tell our story, in case someone can learn or be encouraged by it (as I often learn from others' stories). Sometimes there is nothing to do but make sure they are well cared for, as others have said here.
You could start by discussing with your dad's medical provider - asking more specific questions... although you likely will need to read / educate yourself on your own about how the brain / cognitive functioning declines as brain cells die.
The question I ask you is how would knowing the reasons change or support you in how you interact with your dad.
For me, learning (studying for close to two years with Teepa / webinars (and reading books), it help(s)(ed) me become more compassion and not take behaviors personally.
Gena / Touch Matters
My mom aced the test where you draw the clock and remember a few words—those tests can’t tell you everything.
One thing they did was a biopsy in three places: neck hip and lower leg, if I’m remembering right, to detect the amount of a certain protein which apparently accumulates and travels down the body away from the head over time.
Also the MRI from earlier showed something, maybe it was the enlarged ventricles found with NPH, normal pressure hydrocephaly. I’m not sure how they diagnosed the Alzheimer’s.
My mom had already said going in, that she was already taking lots of meds and didn’t want to take any more. And the NPH Rx would have involved a shunt in her brain, my parents didn’t want that either. So we are just focused on maximizing her quality of life but but not really doing anything specific for her dementia other than keeping her socially connected (she lives at home with my dad still with daily aides and lots of family involvement). The practitioner who diagnosed her said Exercise would be more effective than any medication she could prescribe. My mom used a stationary recumbent bike for maybe a year or two but as her condition worsened she lost her motivation.
So I totally get wanting to know, it seems to validate what you’re experiencing in a way, but at the same time, some people might not want to know, and whether having a diagnosis ends up changing anything for your loved one, maybe not. That’s been my family’s experience.