First steps with signs of dementia

[JenniferG984206]

My mom experienced serious symptoms this week but did not tell anyone nearby who could help, even after her sister (out of town) urged her to do so. I was on vacation. When I returned and took her to a doctor at last, he immediately suggested the ER. That led to time in ICU.

She is recovering physically. My concern is the major judgment failure here on her part. She still seems to think that not bothering anybody - while she lay in bed dehydrating, with symptoms that worsened - was the right or noble thing to do. If I had not come home, she likely would have died.

I started to wonder about dementia and saw that poor judgment was one possible sign. The only others I notice in her are mood issues that seem much worse in the last year or so. My aunt, who's a nurse, has noticed similar things.

My mom has wondered about her own mental abilities for a few years, but this is the first time I have seen something so drastic that made me think she shouldn't be the one making important decisions. Yet I expect her to be in denial - or depression - once others suggest it.

I'm looking for any insights on the first conversations with someone who shows signs of dementia, about that dementia. Currently, I have a call in to the social workers at the hospital. I don't know what that process will be like, but I thought they might have the expertise to help us sort through it. Any other ideas? Thanks.

[agoyer]

@JenniferG984206 Hi Jennifer - Sounds like your mother is lucky to have you! Reading your post, my first thought was what was the illness that had her in bed? Was it by any chance a urinary tract infection? UTI is a common reason for confusion in oldre adults - in fact usually in the ER if someone comes in acting confused and not themselves they usually check for a UTI. Often people (especially older women) don't feel some of the common symptoms (such as the burning upon urination) so they don't realize how sick they are until they are so sick they can't do anything, including get out of bed. Unfortunately I know this partially because my Mom died from a UTI when she became septic very quickly - we didn't realize she probably had it for days before she got sick. Chronic UTIs are very common for older women, and since they don't always feel the traditional symptoms and already perhaps have urinary incontinence or leaking, they don't deal with it. 

So - you might want to track the times when you observe her seeming confused, poor judgement etc and check for UTI. I've heard many stories from caregivers about incorrect diagnoses assuming dementia when a UTI or other infection was the cause. Other causes could include medication reactions, not taking medications or taking them incorrectly, blood sugar issues, thyroid imbalance and more. Always good to rule these things out before assuming dementia. 

That said, I echo the comments urging you to get a full cognitive evaluation. Her primary care doctor can do some of the tests, but a neurologist generally does the full evaluations. There are many types of dementia, so if she does have dementia it is important to know which type. 

My Dad is 94 and lives with me and has Alzheimer's, so I've been through this too. But we've been very lucky as Dad talked with his doctor about his "memory" on his own (and he had a good doctor who had already been doing regular cognitive tests). But over the years there have been times when we've had to suggest or ask Dad to make changes - such as to stop driving. He just couldn't understand why just because sometimes he has a little memory issue sometimes we wanted him to stop driving. So, we emphasized more other health issues - he has Glaucoma and we blamed more on his vision. His doctor was a part of that conversation also. 

Here is my short video with some practical tips that apply to any type of difficult family conversation - I hope it will help as you talk with your Mom. I do think it's a good idea to start conversations about cognitive concerns by focusing on it as a health issue and not talk about dementia or Alzheimer's etc. right off the bat as that can scare her and cause her to dig her heels in and refuse to cooperate with tests - i.e. Mom, I'm concerned about your health as I've observed these changes in you. How do you feel about your health? I know you've been sick, and while you are recovering I'm thinking a good evaluation by a doctor would be very helpful...

Hope this helps! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and Color Your Way Content When Caring for Loved Ones

[Jen]

Jennifer,

We also have some great resources online that may be of use. 

Caring for a Loved One with Dementia

and

Help for First-Time Caregivers

I hope you find this useful. Please write back and kee us updated. 

[JaneCares]

Hi Jennifer,

I used to be a geriatric care manager working with people who have dementia, in the DC area, and now i'm a mental health worker in a rural county. I'm a social worker. I have a couple of thoughts. And as they say in AA, take what you like and leave the rest.

Her judgment was definitely off about not wanting to bother people as she got sicker and sicker. Her behavior may come from low self esteem in general, depression, or minimizing her illness, and i know a lot of young adults and middle aged people who do that. A thorough assessment is a good idea in general, and if you can be there, that would be helpful. I wouldn't jump to dementia and therefore incompetence, guardianship, power of attorney for medical decisions and financial ones... but eventually she's going to need to take care of her affairs and designate decision makers anyway. There's a lot that can be done to help her be safe right now. And you can be gentle and gradual about conversations regarding what she would want done if...

I don't know her financial assets or circumstances but there are a lot of options for helping her stay connected to people and activity out in the world. Are there activities that she used to do that she's not doing much now? Golfing, thrift shop expeditions, church or temple, getting her hair done, going to movies, knitting or other crafts? Can she get back to the things she loves to do? 

There's driving or other transportation to check on. There's safety in the home: does she need an alert button? do members of her family need to take turns calling her every day to make sure she's okay? maybe meals on wheels would give her some added nutrition, and if the delivery person doesn't get an answer, there's a protocol they follow. Does a neighbor have a key, in case she's not answering and you're worried? Does she have a cell phone? Does she keep it on her body (in case she falls)? Are there throw rugs that need to get removed so she doesn't fall?

You can find the area agency on aging by putting in her zip code in www.eldercare.gov and you or her sister can go visit with a social worker there to see what services are available that are free or subsidized.

It would be great for all of us on this site to hear from you later as you learn stuff and find out what is helpful. Feel free to leave more detail if you want, too. Astraea is right, that is a great book. 

I'd make sure she isn't depressed, and make sure she isn't missing opportunities to stay physically and socially active. She will decline much faster if she doesn't move and doesn't talk to people regularly. Use it or lose it as they say.

Thanks for writing. Please write more. Hope some of this is helpful.

Jane

[EveRH]

The changes can be gradual, and/or the person can be mentally 100% .. but for only 90%, 80%, 70% of the time. When they are 100%, they're probably afraid of what well-meaning family members will want to do to "help them", so they try to hide their symptoms & not talk about concerns. Most people value their independence, and adult children tend to want to place an elderly parent with symptoms in a "facility" where they'll have no control.

It would be good if you could have your mother evaluated, by a professional savvy enough to present it as an overall wellness check after the dehydration episode .. rather than being so obvious that it's about dementia & competence.

A good book to read is "The 36 Hour Day".

[JenniferG984206]

Thank you for these thoughts. I will check out the book you recommended.