To test or not to test?

My 92 y/o mother was diagnosed with progressive dementia in 2016 and I've never used that word with her yet, and she now resides in Memory Care. If she asks me why she had to move, I tell her she has memory issues plus has too many needs the AL can no longer accommodate. Takes no medication for 'dementia', per se, either. Her Memory Care is also attached to the AL she lived in for 5 years, which makes things a bit easier. I will say, however, that Memory Care placement should be a LAST RESORT. The vast majority of folks in AL already HAVE some level of dementia, so they don't really need to move to Memory Care until it gets really bad; ie: they start to wander, are unable to find the dining room to go eat; require too much assistance with ADLs, etc. Go ahead & get the diagnosis, if you'd like, it doesn't hurt, because then you know what you're dealing with. If your dad gets agitated or aggressive at some point, then his doc CAN prescribe an Rx to calm him down. But the point I'd like to make to you is WAIT as long as you can before placing him in Memory Care. Leave them alone as a couple in AL until the FACILITY tells you they can't accommodate him any longer. That day may never come.

I had both my parents living in Assisted Living together when dad really needed Skilled Nursing. I jumped through every fiery hoop known to man to keep them together after 68 years of marriage until my dad passed 1 year later.

Does the AL have an in house doctor you can use for both your parents? I have found this to be a HUGE benefit in cutting down the 100 doctor's appointments that tend to pile up with the elderly. The geriatric docs who come into these facilities see A LOT of elderly folks and are quite capable of handling a host of issues. Once your dad is diagnosed, the in house doc should be sufficient. I myself don't believe in continued appointments with neurologists because WHAT exactly are they going to DO about dementia? Not a damned thing.

Best of luck moving forward.

I think the biggest card on the table is separating them. There are small privately owned care homes that will keep them together regardless which one is at which stage. That’s what I’d be looking for. Usually only 5 patients or so, and 1-2 caregivers that live there to tend to them 24/7.

You would want to be proactive in this matter and better off getting the cognitive testing done.

When a married couple friends of mine appointed me their DPOA for all their care--financial and medical--I started looking for a place for them to live. The wife had frontal temporal dementia and the husband short term memory problems that kept him from noticing the changes in his wife's abilities. As soon as the wife wasn't with her husband, she was looking for him. I finally found a place with memory care apartments large enough for a married couple and 2 1/2 years later, finally convinced the husband it was time to go there. I had that discussion with him 3 more times because he kept forgetting he had agreed to this. By this time, he wife was incontinent and wandering and needed 24 hour care. The day of the move, another friend took them out to breakfast and to have their nails done while I and the moving company brought their furniture over to their new apartment. We set up the bedroom just like they had it in their condo, and the TV room as well--the same furniture arranged the same way. When they got there that afternoon, the husband saw his favorite recliner and sat down with a sigh of relief and has been happy ever since.
The head nurse gave me invaluable advice for the wife's care, including going to the geri-psych ward at a hospital to find a medication that would calm her down without doping her up. She was incontinent and wouldn't let anyone clean her up. It took 3 1/2 weeks there to find the right medication and dosage. After that, she was very calm and cooperative until she passed away.
The husband is still there and this facility agreed to take public financing after 18 months of regular payments. He had been there 4 years now and we have another year or so of money to use, but he will never have to leave.
I like that he always has company at meal time, that the staff checks on him regularly and makes sure he is o.k., with a health professional visiting him once a month to check on him. He is physically healthy at age 93, just can't remember from one minute to the next what he has just asked you or told you or what you replied.
To make it even better, the man in charge of leasing these apartments, JJ, asked why I was doing this when I wasn't even a family member. I explained how I had met them 46 years earlier, how we became friends and without children or close family members, I was the one they turned to when they need this guidance and decision making. He was so impressed. We became friends over the 2 1/2 years it took to get them to move in and JJ left shortly after they got there to have a more flexible schedule to care for his own father with dementia issues. His wife suggested he get a real estate license, which he did, and when I finally got my friend's condo ready to sell, JJ became my realtor, giving me advice and handling all the paper work. I felt so lucky to have found such a place for my friends to be and am very thankful for how things are working out. And without other family involved, there was no one second guessing my judgement or trying to get into their assets. I am also executor of their will, so know what their intentions were for any remaining assets.
The key, though, was finding a place with a memory care apartment large enough for a married couple. I visited 9 different assisted living facilities before I found the one that would work. And boy, did it work!

See if you can find a gerontologist to treat your parents. Got one for my husband and "lost" 8 doctors immediately.

You are fortunate they have memory care at the AL facility where they are at now. My parents started out in AL for one year but then my moms Parkinsons progressed to a point where the AL facility could not meet all her needs since she requires a 2 person assist. I then moved both my parents to a memory care facility. What a difference in the level of care provided. They are trained to handle memory impaired residents and my parents get such better care now. They too have LTC insurance. When they lived at AL there were a lot of charges that were not covered by ltc insurance that are covered at the memory care place. It all has to do with how the facility breaks down the charges. Ask questions up front of the facility in how the charges are broken down and review your parents ltc policy to determine what charges are covered. Even though the monthly charge they pay at the memory care facility is about $6,000 more than AL for the 2 of them, more of these charges fall under the ADLs that are paid for, so their net cost is less now and they get better care. I had both of my parents tested for dementia but I never discussed the results with them. Having the dementia diagnosis means their ltc insurance covers the cost of additional caregivers because the facility does not accompany my parents on outings and you can't have a dementia patient leave the facility on their own. I have had to go to battle with their insurance company to get the compensation they deserve and it was well worth hiring a lawyer to achieve this as I could only get so far on my own. The threat of a lawsuit from the attorney made them rethink their denying my parents private caregivers when living at a facility.
Good luck. It is a lot to handle but you will get through it.

YES! I wish with all my heart that both my mother and my MIL had some kind of cog eval--both are slipping badly mentally, and those is 'charge' of them all think that it's just something to live with. Very possibly it is, but I personally think that having that dx helps with the choice of care.

My YB has taken charge of mother and he feels it a personal affront to have someone label her as 'demented' yet I feel if I KNEW that's what was wrong with her, I would be a lot more sympathetic towards her when she blasts me with anger or some completely thoughtless remark that leaves me reeling.

My Dh is in 'charge' of his mother and he will barely even visit her. Maybe 10 minutes in 2 weeks. He lets his sister bear all the CG and won't help. His mother recently spent 6 weeks in a hospital then a NH. I am not allowed around her (she finds me to be a trigger to her temper, so I have to stay away). She's back home with a walker, an oxygen tank and tubing and clue not one as to what she's supposed to be doing--has refused in home care, so it all falls on SIL. Another huge fall is almost inevitable.

KNOWING isn't that bad. NOT KNOWING is awful. MIL wound up in the hospital b/c she had a raging UTI and even after that was completely cleared up, she was still screaming at people and causing a real ruckus. Is this her new personality? Would help DH and SIL to know how to treat her, instead of just sighing and saying "oh well she's old and mad".

Sounds like your mom has her finger on the button. Support her, as she is the primary CG and lives with your dad.

Well, if it were you, would you want someone to find out your diagnosis. Would you want someone to go the extra mile. What you want is accurate diagnosis for appropriate treatment. In the early stages of impaired memory doctors will prescribe Namenda and Aricept, usually initially, then together shortly after the first medication is prescribed. With my stepdad, I saw remarkable results. I also realize that he is taking a slew of medications. What many people do not realize is that after years of taking medications, they should do a medication review to determine if all those prescribed medications are necessary. I have seen people who were on a slew of medications, then placed on hospice, were all medications are not covered, get better when those medications were discontinued. They had less symptomology. Some woke up, were more alert. The fact that you work full time is difficult. Options include taking sick leave, arrange appointments later in the day or you can utilize FMLA benefits, if your state provides. Also, in the elderly UTI can cause confusion. Keep that in mind.. Another concern, some long term insurance companies will not cover a diagnosis of dementia. Be careful. Finally, if he has to move to memory care, they would have to be separated. Maybe you can find a facility that will allow them to be together despite his decline in cognition. But then, your mom is compromised. Unless, you do the math, calculate how much it would cost for the facility. Decide to keep them home and hire care givers. Good luck with your choices.

My dad’s 94 and IS NOT DIAGNOSED with anything yet he has full blown memory loss and various flare ups in mood . But other wise he is highly intelligent and functions independently. Electrolyte imbalance is the secret that the Medical money Milking machines don’t divulge. And 4 pages of pills is usually the true cause of the dementia. Pay an MD that has taken “functional medicine courses” and pay out of pocket to assess what needs to be removed and adjusted from your dad’s pill Arsenal. I can almost guarantee he will improve immediately. Oh also try your best to remove fruit juices, bananas, cakes sugar breads sugar from their diet as much as you can and use instead for occasions. Read up on reversing Alzheimer’s online and you will see simple things that can be done to remove symptoms.
if in fact it is truly cognitive decline, at least the most severe symptoms can be modified by being more advanced with lifestyle and nutrition. Some ALF are beginning to use some of the protocols of Dr Dale Bredesen.

If he has dementia,  having the testing or not having the testing will not change the fact that he has it. And while there is not a pill to fix it, they do have meds that help with the mood swings, paranoia, anxiety and depression.   Unfortunately, at this stage in their lives, they can't be "treated" as a couple.  His needs may be different from hers.  I know there are a variety of Assisted Living facilities out there, but the one I moved my mom into has a physician that comes to her apartment when she is sick or needs an appointment with him.  There is also a podiatrist that comes on certain days.  They even brought in a portable xray machine when my mom had a bad cough to make sure it wasn't pneumonia.  Having her there limits the amount of running around that I was having to do.  I do attend most of her appointments, but not all...depends on the issue.  Maybe your parents are seeing specialists that require going outside of the facility..I don't know.  I hate to keep bringing up my moms facility, but they have a locked door that separates the secured memory care area from the assisted living area.  If you could find a place like that, your mom could visit him when she wanted without having to leave the grounds and your dad would be in an area that can deliver the care he needs.  Just a suggestion.  You are only one person and you have to create a situation that meets their needs and doesn't kill you in the process.
I wish you well.

My mother's doctor treated my mother for dementia (there are some medications that might slow it down) without going through formal tests. You might want to consult your father's doctor first. Unfortunately, even these medications may not be effective, and there is no cure. I never had my mother formally tested for dementia or alzheimer's. I figured that it wouldn't make a difference. It was obvious that her mental abilities were declining.

Hi Vanistan, first off try not to let this situation beat you up. It is great you are reaching out for help.. A couple things caught my attention. 1. The word "exactly'. If dad gas dementia, it is next to impossible to determine how quickly it will advance, but you best be prepared for things getting worse. 2."add more medications to his 4 pages worth." My gosh, this does not sound right. I recently attended a seminar on dementia, the guest speaker being the director of Stanford Geriatrics. The message was not more than three prescription meds should be administered on a daily basis. Does he have a primary physician? What does he or she say? is his primary aware of all the meds he is taking? It may be worth a second or third opinion. we all wish their was a magic pill out there for dementia but tell mom, adding more meds could be detrimental. 3. " Between them, we have 9 doctors appointments in a 3 week period.' Good golly. someone here sounds like a hypochondriac. I would seek out a geriatric physician if his current primary is not one. but 9 doctors in three weeks? No something is wrong here. it very well could be that all these medications are creating more problems than fixing them. When you say slurred speech, irritability, these could be signs of over medication or bad drug interactions. always get second opinions if you can, speak to a pharmacist also. If he is getting RX from different doctors, without the knowledge of his primary, this is not good.
you can familiarize yourself with dementia testing. Great advice on YouTube. You can even try a few tests out yourself on your dad. On of my favorites is drawing a circle like a clock, and having him mark the hours. so if he has dementia, what to do? study it. The AL must have a consultant you can talk to. Dementia can advance at different rates. Again, one cannot foresee or calculate the future state of mind at any one point. this is where "exactly" becomes a useless word. I do agree with a brain scan or something to create a baseline. But first, address the medication situation,and ask yourself, are there any doctors you can eliminate? Remind your mom she is not a doctor. I hope this helps. You are a good daughter to care so much about your folks. But remember your own health is just a important.

Short answer is YES YES YES! She lives with him why wouldn’t you? Help her.

at some point, I decided that my dad was better off with a less ‘intense’ approach to medical intervention. Though healthcare professionals obviously know that aging is a natural process, they do not approach it as one. If the patient or family reacts to every condition as If it is a treatable one, its been my experience that doctors will propose one medical intervention after another. That’s how one winds up with a box load of drugs and a calendar full of appointments that only result in better blood work results, not a better life.
My first question after every proposed drug, test, procedure, is “what is the goal and how will his life be better if the goal is met?” Doctors need to understand your expectations clearly.

Also, I agree that, once any treatable causes for the cognitive issues (like a UTI) are ruled out, there is no real benefit to having a specific diagnosis of dementia nor to knowing the exact stage. If the family and doctors acknowledge that dementia exists, What’s the point if the testing?.
Personally, I don’t think the drugs are worth the side effects. They just make docs and families feel like they’re doing something. My dad had no discernible improvement. That’s also been the experience of others I know whose loved one has taken them.

I would have the neuro psych done and hopefully it’s done in a low key way he isn’t frustrated. I also would tell him he did fine no matter what. Perhaps with the diagnosis they can put him on something for anxiety to help him cope. As far as AL and MC, my friend’s parents lived together in the MC section of the AL - mom had the door codes since she was cognizant. Good luck.

First how smart of your parent to move I to AL. I wish my parents made that move when my dad was alive. U fortunately I had to move my mom there after he passed. In my opinion
The worst thing that happened is when my mom was told she had dementia/ AD. literally the moment before that she was enjoying life. After that she shut down. Went through a depression that she is still going through. If he has a caretaker( which sounds like between your mom and the AL he does) then I don’t believe there is any need for him to know. Have him tested in a way he doesn’t know about but don’t let him know the outcome.

Thanks so much to all of you for taking the time to respond. Your notes are all very helpful. We see the neurologist for a consult today and we'll see where this goes from here. So grateful to have the counsel of so many wise and considerate folks. All the best to you all!

Is your parent's paperwork in order? If not, get that in place asap. POA, updated wills etc.

Mum is asking for help. Please listen to her and arrange for the testing. Especially if it may get him access to LTC benefits and perhaps give Mum a much needed break.

You do not know that it would be dreadful for Mum if he is moved to a higher level of care. It may give her the opportunity to go back to being a wife and partner and stop being a care giver.

This may be an unnecessary reminder, but as your parents have been so competent at least until very recently, you may not have completed all the paperwork you ought to have for each of them. HIPPA so that you can be told about medical issues, POAs, wills, and perhaps more. It’s a really good idea before they lose competence to complete them, whatever you decide about testing.

Whoa. 9 appts in 3 weeks? Gees. No wonder you are worn down! Just MAKING those appts can wear a person down.
My hope would be if you find a compassionate neurologist they will not push unnecessary testing.
In my mom's case we just literally sat and chatted for a couple hours and he got the sense of things with his years of expertise. There was no sense in going ahead with testing because it would be of no benefit and not change the outcome; he knew that the meds were not going to change anything at mom's age (at least 95 at the time). So many people want to believe in the miracle of the pills...
Since communication is so essential as you figure it all out, these diagnostic appts are probably the more important ones for you to be present at. And of course the sooner a test is done and treatment underway for a potential UTI, the better.
And elder law attorney would be a good place to get some unbiased info in re to labeling dad with a diagnosis and the impact on the living arrangements...either that or the local long term care ombudsman so your rights are protected.
If you wind up needing incontinence supplies check out HDIS which delivers and has a wide variety of stuff...good luck...

Vanistan,

Put your mind at ease and have the testing done. Then you and everyone concerned will know what you are dealing with and if there are issues you can move forward with the proper care.

Best wishes for you and your family.

Ann,

Thanks for pointing out information about strokes. I took care of my dad after a stroke. Testing can reveal numerous situations. I feel it’s better to know what you are dealing with rather than to wonder about it. Seems like not having all the facts would be more stressful.

I agree with Barb...if your mom is the scientific rational one, she sees him 24/7, and still has her faculties, I would follow her lead and get him tested. As long as it’s not invasive or painful. And we never said the word dementia to my mom. We always just referred to it as “memory loss”. I think it’s kinder. But I seriously would look at that med list before adding to it.

I'm going to go back to..."my mother asked to get him tested for dementia".

It sounds to me as though your mom is begging for help.

It sounds like she is worried about what is going on behaviorally. As someone said above, if he is acting out his anger and incontinent, he may be at the moderate stage already.

Keep the neuro appointment and bring along a list of all that mom is concerned about. Give this to the doctor to read beforehand. Dad may "showtime" like crazy.

Consider also if there is a geriatric psychiatrist who visits the AL and sees patients there.

It was my mom's geri psych who insisted on a cognitive evaluation for my mom, but that was because she had developed off the chart anxiety that was difficult for all of us (incl. mom) to cope with. Finding out that she had cognitive issues made it easier for all of to justify simplifying our language, lowering our expectations and doing much more high level planning FOR her instead of expecting her to remain the highly organized person she'd always been.

Be guided by the neurologist's recommendations. S/he won't recommend a full cognitive battery if it's going to be frustratingly impossible for dad. Doing a simple evaluation like the MoCa may be all that is needed in this case, along with brain imaging.

Meds that may be recommended should focus on his anger and possible depression and anxiety.

I'd also be going over those 4 pages of meds with a pharmacist or a geriatrics doc to see if there are any interactions that could be causing the anger. And if they are all actually necessary. Sometimes, less is more.

Another consideration may be that there are some people who live with dementia more easily than others.
Although a painless brain scan can be a good thing to have as a baseline, behavioral assessment can be a better way of figuring out what to do about day to day living.
My mom had a very severe hemorrhagic stroke at 85, and a brain scan revealed global “shrinkage”.
Her recovery was almost instantaneous however, and she returned home to live by herself with minimal assistance until she was almost 90.
For my present dependent LO, visits by a gentle, affable psychiatric PA gave us a focused, very revealing description of what aspects of her cognitive processes were deteriorating, and we hen had a framework of how to address her issues both from a behavior management and a medical standpoint.
A terribly tough call, but my feeling is that whatever info can be collected as painlessly as possible, benefits the person being assessed.

I would get a brain scan to see if there are brain changes but I wouldn't bother with any extensive cognitive testing. The many forms of dementia progress differently and conditions like normal pressure hydrocephalus can be treated.