Follow
Share

Long-time reader, first time poster here....My dad is nearing his 89th birthday. He and my mom moved into AL about a year ago for a variety of reasons with both their health, though until age 87 they were incredibly fortunate and lived very independently. Daddy's cognitive condition is showing decline and my mom (who was once a science teacher and highly rational--not governed by emotion much at all) is asking us to have him tested for dementia. His speech is becoming garbled, his temper is much shorter and he will pop off about things that he once would have let slide. I'm trying to determine how aggressively we need to know exactly what is going on. I'm not sure that it is useful to know at this stage of the game as he doesn't really need to add more medications to his 4 pages worth, though mom thinks they can just give him a pill and it will make him better. He is also becoming more and more incontinent, and has had several UTI's, which I know can cause some cognitive challenges. We are seeing a urologist about that dimension. We are facing a challenge with their long term care insurance, for which having some kind of memory diagnosis might be beneficial to help him assess for a higher level of care, but I am also concerned that going through this and adding a word like dementia will just be emotionally devastating (and concerned that if we get a diagnosis like that that he'll need to be moved to memory care and that could separate him from my mom, which would be dreadful for them both). We are going to have a consultation with a neurologist this week, but you all have a lot of crowd sourced wisdom among you and I thought I'd see what the hive mind thinks. Would you put him through what are likely to be a lot of frustrating and exhausting tests or would you take a more low-intervention approach? Between them, we have 9 doctors appointments in a 3 week period and I work full time. We've got some help with transportation from friends, and that's worked well for the last year, but as their health declines, I'm feeling like I need to be at every appointment to hear with my own ears what is being assessed, and that is really wearing me down. I'm a late in life child, and so I'm nowhere near being able to retire to care for them full time, unfortunately.

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.
Helpful Answer (11)
Reply to BarbBrooklyn
Report
Vanistan Oct 9, 2019
Geriatric Psych!!! I had never heard of this specialty and we have a med school with a dept around the corner from me. I might very well go see if we can see them. I don't think they come to our small AL, but I will ask. Very helpful reply. Thank you!
(4)
Report
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.
Helpful Answer (9)
Reply to cwillie
Report
Vanistan Oct 9, 2019
Thank you!
(1)
Report
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.
Helpful Answer (9)
Reply to AnnReid
Report
Vanistan Oct 9, 2019
Thank you very much for your sensitive reply. Best to you and yours!
(2)
Report
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.
Helpful Answer (8)
Reply to rocketjcat
Report
Vanistan Oct 9, 2019
Yep, the med list is a bear! Thanks for your note!
(2)
Report
The neurologist might get him started on medication to slow the process but there is no turning back the clock and no cure. It sounds as if he is already at a moderate level. How safe is he at home? Is his wife getting frustrated with cleaning up after him?
The the neurology diagnosis may help get him set up for memory care but he may not be ready for nursing home. It kind of depends on the long-term policy.
Please try to stay one step ahead of his behavioral issues.
Helpful Answer (7)
Reply to MACinCT
Report
Vanistan Oct 9, 2019
They are in an AL community, so mom has a fair amount of help on the cleaning up dimension. And he is wearing diapers to help with the mess situation. We are OK on that front and the urologist is helping us try to sort out what might be at work.

There is a memory care wing in the place where they currently live, so he can move around the corner if needed and I believe that will qualify for the LTC coverage but I need to dig deeper into that (in all my ample free time ;) ). But of course we'd prefer he not need it!

Thank you so much! Best to you and yours.
(1)
Report
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!
Helpful Answer (7)
Reply to Vanistan
Report
gdaughter Oct 10, 2019
good luck...let us know later how it goes!
(3)
Report
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...
Helpful Answer (6)
Reply to gdaughter
Report
Vanistan Oct 9, 2019
Thank you for these helpful suggestions! I will check out HDIS! And good suggestion about the attorney and impact of diagnosis.
(2)
Report
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.
Helpful Answer (6)
Reply to Tothill
Report
Vanistan Oct 9, 2019
Yes, I have taken over all their finances and other business as POA and we sorted out the wills/trusts some time back. Mom thinks separation would be dreadful though maybe it won't actually be. Thank you!
(1)
Report
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.
Helpful Answer (5)
Reply to MargaretMcKen
Report
Vanistan Oct 9, 2019
Thanks and yes, I'm on all their various HIPPA's, have their POA set up and have taken over all their banking, finances and other business affairs. The wills/trusts are up to date. There is something new to think about at every turn, isn't there. Thank you!
(2)
Report
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.
Helpful Answer (5)
Reply to Jamesj
Report
truthbetold Oct 14, 2019
My parents psychiatrist said the meds do nothing and the pharmacist said aricept might give a few months if even that. and that you’re better off focusing on fixing diet and lifestyle sleep activity, morning sunshine, environment and getting some high quality labs, and keep researching . Lots of anecdotal evidence shows lots of mood improvements in elders with cognitive decline .
(1)
Report
See All Answers

Ask a Question

Subscribe to
Our Newsletter