Good morning, My FIL is 89 and for the last several years we’ve suspected some form of dementia. In the last year it has become painfully apparent, coupled with a 2 hospitalizations and 2 rehab stints. He and Mom are now in Assisted Living. A memory care therapist comes in twice a week to see Dad. She has assessed that he is in the Middles Stages and gave us a booklet from the Alz. Association. Dad actually seems to fit in several of the categories, including Late Stage. Is it normal to be all over the map like that? The therapist told me that every single dementia patient is completely different from other dementia patients. Similar symptoms, but different progressions?
What is your experience?
We just don’t know what’s next and how to plan for it.
IMO the best you can do is use the stages as a very general guideline, if dementia isn't complicated by other diseases then until profound physical disabilities show up they are not end stage and most likely have years of life left.
Has your FIL been officially diagnosed with dementia or cognitive decline by a doctor? Do you know what is causing the problem, such as Vascular Dementia, Alz., Parkinson's, etc? There are many conditions that can cause the dementia. And, depending on that, it could explain why your FIL is all over the place when you look at charts or stages. Most of those stage descriptions are based on people who have Alzheimers. But, some people don't have Alzheimers. Some have Vascular dementia, Frontal Lobe, Parkinsons's, etc . or it can be a mixed variety. Plus, it could be something else too. I might have him checked for UTI or other infections, just to rule out other causes.
My LO was diagnosed with Vascular dementia, and later, it is thought that she may also have Alz., so, that means mixed. Her progression was not according to the descriptions found on the Alz. chart, but, as she has progressed now to late stage dementia, her symptoms now are on the chart for Late/final stage dementia.
I might discuss it with his doctor in order to get a better idea of just what is going on. I hope you'll get more responses from others who have information on your situation. I know it's so stressful as we want to prepare ourselves, but, don't know how.
The doctor is at least able to tell us that it is some form of dementia and not just "getting old", based on his symptoms--both mental and physical.
The Memory Care specialist is a therapist that comes in once a week with a masters degree in PT/OT/ and Speech Therapy. She works with him to help improve his spatial understanding of where he lives, helps him with his fine motor skills, helps with recall of things that he is losing mentally (can't remember that he can't walk and will just get up, take two steps and fall down). Her main objective is work on his cognitive and physical decline to help him gain some control of the sadness he feels about not being able to do the things he used to. Unfortunately for him, he's at a place in his disease where he's 90% clear on the fact that he can't remember things and can't do even the simplest task without help. His body is going before his mind. :( He slips easily from being fully engaged in a conversation to being confused about who we are and what we're talking about.
In our case, the care is covered by Medicare. It is ongoing PT and OT.
I just take it one day at a time and we do the best we can. Some days are just better than others. For a while he was sure he had 3 wives, all named Linda. If I ever find the other 2, I will slap them silly for not helping out around the house.
Sometimes we look for problems due to any diagnosis. Take it one day at a time and don't look for problems - just deal with them when they pop up.
My Husband was never a conversationalist and he stopped talking very early on in his diagnosis. (he was "diagnosed" with Alzheimer's but I think he also had Vascular dementia)
But there were things that he could do far longer than what was written in the "stages" info.
He was always a great eater and fed himself up until about 2 weeks before he died.
Take the stages as a guideline. Feel good when your FIL can do what he can, help him do what he struggles to do and do for him what he can not.
Have a sad moment when he looses an ability he had a week ago but be grateful for what he still has.
Very likely your FIL's dementia will be all over the place. With all Mom's issues we've lived day-to-day for years. We NEVER expected to celebrate her 89th birthday, but here we are today celebrating it.
Is he a Veteran? The VA will pay for a PET Scan, not Medicare or Medicaid. PET will tell the doctors the most information of non-invasive test. It bills at 8-10k. But some hospitals will give a drastic discount if self pay.
Patients with High IQ’s will not be typical Dementia patients. Dad has Alz, and Mom has some other type of Dementia that perplex the doctors by its sudden onset with such a significant effects. To the point that the Neuro suggested that she may be a victim of an article in the New England Jrl of Medicine Dec 2016 issue of a 27 YO Female whom started feeling ill and seven days later reported to the ED with full blown dementia. The marker to look elsewhere in this case was an abnormal ANA test. Similar to my mother, the new hospital is about to give up on further testing. Which reminds me to go online and share an uodated chart with the two hospitals and see if the Neuro at old hospital can give any further suggestions to test.
The same way for dementia stages - it is not '1 size fits all' but an averaging however it depends on the person - a person's life interest might change what they decline in because walking, talking, eating, etc all take different parts of the brain - so it could be that dancer with little interest in food might walk longer than eating well because there were more pathways there or the opposite you never know how dementia will progress then if TIAs are a factor then that throws a monkey wrench into everything
In other words it is a crap shoot how a person progresses & no 2 people are the exact same [not even twins] - use the guideline literally as a line of actions to guide you but don't make it in stone -
I agree with your FIL's PCP. If it was as easy and as definitive as a blood test or a urine analysis, sure, go ahead and find out. But why put your loved one through extensive tests, if it won't change the treatment plan? And even after extensive tests you won't know for sure that the diagnosis is correct unless you authorize an autopsy when your FIL dies. And why would you care then?
One advantage of having a diagnosis is a benefit for the caregiver, not the patient. If you are pretty sure that your loved one has vascular dementia, for example, you can focus your reading on that kind of dementia, and perhaps find a support group of other caregivers whose loved ones have VD. Again, balance that against putting your FIL through further testing. Would the benefit to you be worth the distress to him? (I think it might, if it provided significantly better insights into his care needs, but we mostly discover those as we work with our loved ones.)
Be happy that FIL has access to Memory Care Therapy. Great idea! Many of our loved ones have had speech therapy and/or occupational therapy and/or physical therapy. Having that all in a package provided by someone trained specifically to work with persons who have dementia sounds brilliant.
I worry about her funds running low but at 91, I just take it as it comes, taking a lesson from her.
As for my mom, after hospital to rehab to NH, she is all over the map. Sweet to incredibly difficult and oppositional. And because she is medically sound, functional and ambulatory, it poses more of a problem. There is also the "sundowning" component that changes "who" you are dealing with or what they are able to do or understand. There is such a range of behaviors and capabilities but you sound like you are top of things.
I am also very interested to know about the memory care therapist. Did the AL offer it to you? I have found the alz. assoc. to be very helpful with some things and very 'canned' answer with others. Best of luck to you!!
Maggiecat--our AL reached out to Encompass which is a therapy based company that has realized there is a ginormous market for our aging population that is suffering from one form of dementia or another. They make each plan fit what the dementia patient needs to feel comfortable in their surroundings and do what they can to help them communicate their needs. The difference is, they know that what they are doing will not have the end result of 'getting better'. It's repeat, repeat, repeat because the patient does not remember what they learned last time. I often wonder if the purpose is to get beyond short term memory into long term memory? "When I sit up in bed at night, I push my button for help." (over and over and over again).