First off, I know a lot of you have loved ones with dementia and please don't take offense that my dad does not want to be on a memory care floor and that I agree with his wishes.
My dad is 66 and suffered a TBI in 1984. He gets confused at times. He might forget the president and things of that nature. I admit, it was never this bad. He has dementia. I would say that dementia mixed with a TBI = my dad.
But he was on a memory care or "dementia floor" as everyone seems to call it at his current facility. They moved him to the other floor (with no input of my own) because they thought he fit much better on that floor. In addition to that he said that some of the other residents' behaviors made him uncomfortable or even scared him.
My dad is not a wanderer and he is always a model resident behaviorally.
We had planned on moving him closer to my mom and the rest of the family + the dog who could go in his room here.
However, the administrator said they first look at medical records (they say dementia although he's been on SSDI for decades for a TBI), then they take into consideration notes at the other facility "if they did their charting," and finally he will take a test that will either put him in memory care or not.
What kind of things might be on the test? Things like, "Who is the president?"
I know memory care is to care for the memory (duh) but I feel it's doing more harm than good if dad hates it and is uncomfortable there. Thoughts?
https://www.alz.org/getmedia/9687d51e-641a-43a1-a96b-b29eb00e72bb/cognitive-assessment-toolkit
(I'm not sure I could reliably pass some of the memory ones 🙄)
They also asked her who the president was and got credit for her answer "The man with the pig eyes." (This was in 2019, and she got credit because she had an awareness of the president and that she didn't like him.)
What she failed was after the official test when she asked the nurse who administered it if she'd met Mom's new husband. (This husband was entirely conjured up out of thin air, and the nurse already knew about him.)
I think you have a bad impression of MC, and maybe the one where he may go isn't a good fit. My mom's place had three levels of care, and those at the highest cognitive level were able to pretty much do as they pleased, plus they were in a different aiea from the others. They had their own TV, snacks and coffeemaker and could come and go to their rooms or outside in the yard as they pleased.
Perhaps consider looking into a different MC for your dad, because if he's in assisted living with his issues, you might find he'll be isolated when others without memory problems don't want to hang out with him.
18-25 = mild cognitive impairment,
10-17= moderate cognitive impairment
less than 10= severe cognitive impairment
So while your dad may be asked who the president is, they're not looking to hear 'a demented old man' as much as Joe Biden so they can see if your dad is cognizant enough to know his name.
It depends what score your dad gets on the cognizance test as to whether he's deemed 'ready' for MC or not. If he gets a 9, I think you would agree he's in need of a memory care floor. If he gets anything less than 17, I'd argue with whomever it is who insists he DO go into memory care. By the time my mother wound up going into MC, she was scoring a 10.
The test is comprehensive enough to where it won't be suggested your father go into MC if he doesn't belong there, I would venture to guess. And again, you will have the final say over where your dad lives. If you are THAT dead set against him living in MC, then say so. There does come a point in time, though, where a person DOES need MC and the shrunken down world it offers where life is MUCH simpler for them to deal with. It's not intended to be some horrible punishment or torture chamber where he'll be miserable, though.......so you should try to remove that thought process from your mind. Your father's best interest is paramount in this whole process.
I will say that mom felt she did NOT 'belong' in Memory Care the majority of the time she lived there, which was nearly 3 years. She felt that the other residents were 'stupid idiots' and she was smart & savvy. Meanwhile, she needed help with 100% of everything she did during the day. There are criteria that go into who needs to live in MC, not just 'scores on MoCA tests'. It's also about how much care they need on a daily basis, how often they fall, all sorts of things.
I hope things work out for you and your dad, and you wind up agreeing with whatever decision is made with regard to his care. And if not, that you move him to where you DO think he 'belongs.'
For instance, a casual question might be asked, as I did the other day, of a friend "Addie" that I've known since childhood. I asked Addie, "How is "Rose" (a mutual friend since childhood that we've both kept in touch with frequently) doing?" Addie began talking about something else entirely, and her hearing is good, so she heard me. She cleverly worked herself out of that segment of the conversation and redirected it. That and some more things during the conversation clue me in to the fact that Addie has no knowledge of who Rose is anymore, and I can also tell that her short-term memory is fading because, due to her response about Rose, I tested Addie a bit during the same conversation to find out how much she was retaining.
Then, my LO was asked by his doctor recently what job he retired from. LO segued into a whole paragraph about how he's done many jobs in his lifetime, some of them harder than others, starting when he worked for his dad in grade school, and in many different places. Big long talk, but he never did say the job he'd retired from, which was a high-profile job that he loved and performed for 35 years. The doctor then restated the same question in the same way. He got the same response from LO almost word for word. My LO no longer remembers the job he retired from but can put on a great dog-and-pony show to keep you from finding out that he doesn't know. So....it's not just the standardized tests. It's the dementia patient's overall awareness of who they are, what they do or did, how they figure things out nowadays, and how they relate.
Another question is to say all the words you know that beginning with the letter____. I usually do pretty good on that one.
Then there is the drawing of a face of clock asking to set the clock hands at 10:10. And also to copy the drawing of a box or a stick figure type of chair or bed. Bingo, easy for me.
Ask to repeat a sentence, such as "The student went back to school without his books and pencils".
There is abstraction test, example banana & orange = _____ [fruit]. Yes, give me logic questions :)
I feel some of the questions aren't really that important. Now, ask me about my career, and I can rattle off information like there is no tomorrow. Ask me about driving from point A to point B, etc.
The tests a facility gives are very basic memory skills. If he fails and they insist on MC, I would suggest trying to find a neuro-psychologist who can do an extensive battery of tests. My husband was tested and I better understood his type of dementia relating to his limitations and actions. As a 24/7 caregiver, I asked to be tested when I became concerned for myself. I learned more about myself and was told my issues were stress and anxiety related. In both cases, she told us she did not see Alzheimers inclinations but could not say it would never be an issue. The tests begin basic then followed by tests that seemed to be chosen based on how the previous one went. Some were hands on puzzles, some were listening and answering, some were pencil and paper, etc. In other words your strengths and weakness are able to show through. If you do this, ask ahead of time if the neuro-psychologist or a social worker will be giving the test. You definitely want to go to an office where the neuro-psychologist administers it because they can observe first hand how he struggles or excels in various areas during the testing. My husband has had both and the one with the social worker only revealed... No Major Problems!
A friend had been told her husband had PD related dementia and after being tested was told he had vascular dementia which requires a different approach. With TBI, your husband may exhibit dementia like symptoms but with proper testing it may be revealed it is only the brain injury which may need to be treated differently from true dementia. Even if the facility decides he does not need MC, you may want to pursue testing by a neuro-psychologist. Unfortunately, you may have to drive further to find one but it is worth it for what you can learn.
Dementia is 1 term like saying I drive a car. Then there is the type of car, the color of the car.
Dad has dementia caused by a TBI.
I would like to think this new facility will take all aspects into consideration but SAFETY will be their first goal.
They may even be willing to move him if they find that they are overly cautious to begin with. You can ask about that.
Keep in mind he may be uncomfortable with the move anyway. Most people with dementia want routine and do not like change (no one really likes change) so the move may put him off so hopefully they take that into consideration during any testing as well.
But whatever they do, where they place him will be with his safety in mind. The last thing they would want is for him to wander off. I know you said he does not wander but there can always a first time.
Although the adjustment period in MC seemed like a LONG time (about 6 months), she ultimately grew comfortable with her caregivers, and referred to her surroundings as her “hotel”.
If you and your father have the financial means to do so, an independent evaluation by a geriatric specialist in psychiatry/neurology/psychology may be a very valuable tool in finding the place that will best meet his needs.
My LO responded quickly to a judicious administration of small doses of medications, and they were monitored every few months during her 4 1/2 years of residential life, AND all of us, professionals and family caregivers, got a better understanding of how our LO was thinking and reacting.
Hoping you find some solutions that are workable for all of you.
This is your family's and your dad's call, end of story. The Admin is trying to maximize the amount of money they can garner from him and is not acting in your dad's best interests.
I would get him to an Elder Care Team for full assessment, including social needs. Get an MD (his 'new primary) to state that his needs for social interaction will be better met on a regular floor. If they refuse to allow his MPOA and DPOA to facilitate this transfer to a regular unit, you need to report this to the state agencies on the Aged, the CMS (centers for medicare services), the state ombudsperson for the aged, the healthcare fraud and abuse hotline, and def get his attorney involved! They are using a wrong primary diagnosis as rationale for sucking his bank account (which I pray you haven't given them auto-access to, if so, cut them off).
You can research all of this and inform the Admin (I've worked with some total sleazeballs) of what actions you'll take in the event that they try to force this move to their MC unit and if they're stupid enough to call your bluff, then let the chips fall where they may.
Ultimately, you may have to move him to a different facility or delay this move closer, one where it's about quality of life, not only the dollar. You may have better options in that locale. It's even possible that an AL can handle his needs, but you may have to hire in more help. Gawd, I hope there is a sizable amount to draw on for his care; he's so young! I'm 65 and the MC unit my Mom is on would drive me insane.
The cognitive tests they use are like the BIMS - research that - and they are simple tests that can be skewed by the person doing the test. They do show changes over time and are used for resident classification. An Elder Care team will evaluate him for many aspects of function by and OT.
DO NOT be pushed around by this admin. Your dad has some quality time remaining and he needs to be where his needs are best met; he doesn't want to be with aged ALZ and dementia residents. A 'WanderGuard' can be placed if there are any concerns about him eloping so don't allow that to be used an an excuse to place him in a secured unit, NHs use them all the time.
I'm so sorry that tragedy has touched your family so severely and I truly hope that you can get him placed where he'll have a modicum of a decent life, and closer to family.
Best to you all.
Her son and family live near her and have begged to have her moved to an assisted living unit. Sadly I live in MN so visits can only be every six months. I’m not sure all states have the same rules about folks diagnosed with dementia.
But please beware of WHO your LO is, what they need and want before you seek a dementia diagnosis.
If he really does need memory care, a proper diagnosis of 'memory impairment' is the key to getting the proper level of supervision and services he may need. If it's the Alzheimer's label that worries/scares you, understand that there are different forms of memory impairment, not just Alzheimer's. Ask yourself, is it the label or the environment/setting/program that "doesn't feel right". It can be hard to accept such a devastating diagnosis at such a young age.
Alternately, the facility may be trying to 'pigeon hole' your dad into whatever type of care/unit they have available; the 'best fit we have for him'. So maybe that's not the place for him. Are there other alternatives available in the community or nearby? Knowing your Dad is younger, and sufficiently observant to his surroundings, he may perceive that he doesn't 'fit' with these older people. That's understandable. If the fit truly doesn't feel right, don't settle.
When I first placed my 88 yr old Dad with ALZ, (we had to get him out of the hospital after having a urinary catheter implanted, he needed constant supervision), the unit he was placed in simply did not feel right. Most people were not alert or independently mobile. My Dad was still telling jokes and ballroom dancing!! I brought others who knew him well, to come observe, and we all agreed, this was NOT the right place for him. So I endeavored to find a proper place for him, and luckily, I did. He had a safe and meaningful life at a wonderful memory care facility, and I could be his daughter, not his nurse.
Good Luck
If he is around people who scare him, that is not a good fit.
Also do know that many places now have in-between facilities. My brother's ex was in one that didn't have a huge increase in staffing because the people didn't need it but did have some other care considerations, such as locked doors so they could only leave accompanied, and so on. I was told this is happening more and more because some people ARE in between. They don't need to be bathes and showered and changed and constantly watched, but they do have some dementia.
I sure do wish you and your dad good luck and I sure do hope that he "passes" with flying colors, but I do ALSO think that your letter saying just what you did to us may help. Be sure to hand it in to the person that matters in all this, likely the woman you already spoke to.
Again, the very best of luck, and please update us.