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.
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.
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.
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...
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.
I wish you well.
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.
See All Answers