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Hi All! Brand new here and I thought I had a decent understanding of dementia until my MIL (upper 60's) was diagnosed with it about two years ago and had to give up her job and driver's license. She has a very difficult time with words, as she struggles to find the right ones and often gets lost in the conversation. She no longer does much cooking (maybe even none) and struggles with some daily tasks such as fastening her pants or plugging in the vaccum. But on the other hand, she still participates in certain things (she watched and talked about the State of the Union address) and gardening. I don't know exactly what I'm looking for, other than I guess just to understand where she is at with this. It sounds silly, but it's like I'm not sure how to interact with her. She's so limited in some ways, but surprises me at times in other ways (I guess maybe that's what makes this disease so frustrating...). I suppose it's also compounded by the fact that we have never been very close. Additionally, the family (my husband included) doesn't talk about it much and there seems to be no "plan." The family was in denial for awhile and they still sometimes refuse to believe she is diagnosed with anything (they say she has only been diagnosed with "dementia symptoms" and that it could be something else). To my knowledge, my FIL has not met with any specialist to actually get an understanding of the disease or gain familiarity with the stages and what to expect as it progresses. My husband is actually the one who took his mother to a neurologist and observed the testing they did with her. Any thoughts or advice for interacting with her (I guess at the end of the day just treat her kindly and with respect!), what stage she could be in, and what to expect going forward? I appreciate any advice, thoughts, or perspective! Thank you!

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Compare the brain to a lot of filing cabinets. When we are young, it is easier and quicker for us to find the right file folder that has the information. As we get older, those file cabinets are harder to open because they are jammed with so much stuff we have learned. Thus, it takes us longer to find the right file.


With dementia, those filing cabinets now stick, and when opened information has been misfiled, thus making it harder for one to find the right words. Later stages of dementia, the key to those cabinets are missing :)
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Silveraven Mar 16, 2024
Hi - this is a great analogy! It kind of helps put it into perspective.
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Welcome to the forum!

It’s so hard to see a family member struggling with dementia.

I am struggling with accepting that my younger brother has Alzheimer’s disease.

My brother is only 60 years old and this isn’t what he expected for his future.

Speak with your MIL’s doctor about your concerns. Educate yourself on dementia. Know that your MIL will never be the same person that she was before her diagnosis.

Take breaks when you need to. Wishing you and your family all the best.
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Silveraven Mar 16, 2024
Hi there! Thank you. Yes, this is a hard diagnosis to accept and you're right - it isn't what any of us envisioned for our loved ones futures.
I will try and speak with MIL's doctor and get some help with my concerns. Thank you for your kind words of support and I wish you the same!
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Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and how to interact better with MIL. Read it with her husband.....so many men are in denial about their wives or mother's with dementia, it's unreal. They still expect their women to be Superwomen and invincible for life, believing nothing can ever affect their brain like dementia. Dementia is progressive, meaning dirt will get worse and worse in spite of family thinking there's nothing wrong. And then decisions have to be made about placing her in Memory Care Assisted Living or hiring in home caregivers when she starts refusing to bathe or becomes incontinent.

Wishing you the best of luck with all of this.
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Silveraven Mar 16, 2024
Hi - thank you! I will definitely check out that book. I appreciate the recommendation! You're right - FIL has totally relied on his wife for everything and has expected her to be superwoman! I've noticed that he has tried to involve her in certain decisions that she sadly just isn't capable of making. I'm not sure he even realizes the difficult road ahead regarding Assisted Living. I think he is hoping to just keep her at home forever and has not considered the possibility of her needing care. It will be a long road and I appreciate your words of support. Thank you!
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you can read the books, that is helpful yes. But on the other hand, as someone said, "if you have seen one person with dementia, you have seen one person with dementia." There is so much variability
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NeedHelpWithMom Mar 12, 2024
Yep! Great point, SS.

It’s the same thing with any condition.

My mom had Parkinson’s disease along with dementia. Parkinson’s disease affects everyone differently as well.

Same with MS and many other conditions.

Still, finding out as much as we can about a situation does give us a framework to draw from.
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"She has a very difficult time with words, as she struggles to find the right ones and often gets lost in the conversation." Sounds like aphasia.

"Although aphasia is often the result of a stroke or brain injury, dementia can also cause it. A certain form of aphasia, primary progressive aphasia, is a type of degenerative disease that affects the speech and language portion of the brain. In some cases, it may be a form of atypical Alzheimer's disease."

Source: https://www.medicalnewstoday.com/articles/aphasia-dementia#summary

Has the neurologist suggested any therapies for her speech and processing issues? Your MIL is pretty young so maybe she may be a good candidate for it.
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Silveraven Mar 13, 2024
Hello! Thank you. Great suggestion and yes, she did receive speech therapy. I don't believe she is still participating though. I do know she seemed to enjoy it so maybe we could lokk at her getting back into it?
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You write, “they say she has only been diagnosed with "dementia symptoms" and that it could be something else.”
 
It IS something else! Dementia refers only to symptoms. It is not a disease and certainly not a diagnosis. It’s like saying a headache is a disease or a diagnosis. A headache is the result of some underlying cause… maybe stress, the flu or a brain tumor. You would want to know the cause. Ditto with dementia. There are many causes of dementia symptoms from progressive neurodegenerative disease to meds interaction, UTIs, vitamin deficiency and many more. You need to know what you’re dealing with. A neuropsychologist can help. Once a diagnosis is determined, you can educate yourself about the cause.
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Silveraven Mar 13, 2024
Hi - thank you for responding!
Well, this is the issue... I know bloodwork has been done and that MIL has AFIB so there has been some doctoring with that, but FIL has not pursued things much deeper. When this started, the PCP is who suggested dementia and then MIL and FIL were offended and never went back. As things progressed and others began to notice, the visit with the neurologist occured and I am told only that she was diagnosed with "dementia." She and FIL refused any further testing, such as for Alzheimers. I believe it has a touch to do with denial - if they can believe it's something else then there is hope...
So, I think they just actually prefer a more vague approach..
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Your husband taking his mother to a neurologist is the first step in the right direction in this dementia journey. In order for you to understand the impact that this disease will have on your entire family, I am suggesting that you go with your husband to the follow-up neurologist visit of your MIL and ask the doctor all the questions you have about this disease and what to expect with regard to your MIL going forward and what stage of the disease your MIL is currently in. BTW, did the neurologist prescribe any medication like donepezil (Aricept) for your MIL’s symptoms?

I have read many, many sad and heartbreaking stories on this forum about the experiences people have with their loved ones suffering from dementia/Alzheimer’s disease and the road ahead will be a long one for you and your family. As you have stated, “at the end of the day just treat her kindly and with respect!” Good luck.
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Silveraven Mar 13, 2024
Hello- thank you for responding! Yes, I'm thinking maybe I should attend an appointment in order to get some questionsanswered and learn more. I know that medication was discussed at one point and MIL (I also believe FIL, too) was opposed. MIL is on medication now but I 'm not certain that it is dementia related. I have asked my husband what she takes and he doesn't know. This is where some of the family's vagueness and lack of communication confuses/frustrates me.... FIL is rather closed but I think my husband could find out so I may try to get more info.
Again, thank you!
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Just be a kind daughter-in-law.

If talking is getting difficult, move to simple activities. Eg Look through a loved photo album together. Finding some favorite songs from her younger days may be nice. Finding videos online may add another layer of interest.

If you know her past hobbies or interests & share any, even better.

eg If a gardener, take a walk in the garden or bring flowers to cut down & arrange in a vase together. Craft people may like to look through craft magazines, sort buttons or fold fabrics. Colouring books (even those for adults) might appear too juvenile/silly for some folk but some love them.

Sporty types may like a game of carpet bowls (if balance to bend is ok).

Would an easy card game or watching/helping you play patience work?

People can lose ability to initiate a hobby or task themselves. May say an automatic 'no' to all suggestions... But sometimes they will join in whatever you are doing.

'Stay at home until you can't' is a plan that many people have. Whether FIL wants a detailed diagnosis or is happy with a more vague 'getting old' will be up to him.

FIL may need steering towards hiring some home help as time goes on, to make their lives easier.
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Silveraven Mar 13, 2024
Thank you - these are great suggestions and I appreciate you offering up so many options and also including such specific ideas! Also, good point about her perhaps not initiating an activity but likely joining in. I will initiate and try some of the things you posed. Also, I like what you said about "stay at home until you can't" being a plan and that FIL may be content with the more vague approach. It's helpful for me to hear that so as to keep it in perspective and realize that it is ultimately his choice.
Again, I so much appreciate your kind and thoughtful response.
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If she has Alzheimer's her behavior will not be strange across all activities, memory, or speech. And she may seem perfectly fine some days, until she is not okay and might in fact do dangerous things, like get lost, leave the burner on the the stove, etc. So far you are doing the right thing to be watchful, kind, and respectful. If she forgets things and doesn't mind gentle reminders, okay, but at some point she may get irritated with reminders because she simply does not see the world the way you do and will be confused when corrected. Whatever can be done to keep her interested in politics and gardening is great. My mom liked puzzles. If FIL is always around to keep her safe, great, because at some point she should not be left alone. This current behavior may go on for some time, or you may notice changes soon. Then you may want to speak louder to your husband about it.
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Silveraven Mar 16, 2024
Hi - I appreciate your response! Ok, that is helpful to know that her behavior may not be strange across all areas. I've not witnessed any irritation from her (regarding gentle reminders) but I know my husband had a chance to witness it so that part of her personality is beginning to change. I guess that's a good way to consider it --- "she doesn't see the world the way we do." Also, FIL is around to an extent, but I think he is still leaving her alone at times and I do worry about safety. But, I suppose he will need to come to terms on his own with some of these lifestyle changes and adjustments as things progress. And yes, as we notice, we will definitely speak up to him about it. I apprecaite your thoughts - thank you!
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Hi Silveraven, what you describe is a common pattern. My dad was diagnosed with frontotemporal dementia in Jan 2021 but was showing symptoms for years before that. I had to convince my mom every step of the way to get him checked by his PCP, for hearing loss, by a neurologist, etc etc. Then to take away his car keys, his access to his retirement account and checking account, hide the ladders, and so forth and so on. every time her default was “just leave him alone” even though he was endangering himself and her too in various ways. Once she came to terms with one loss, she would just kind of hope there would be no more losses. But more keep happening.

He’s now in hospice at home and she still checks with me nearly every day (sometimes multiple times per day) on what should she do about him not wanting to drink water, not wanting to shower, can’t use TV remote anymore etc etc.

I think “just carry on as is, hope things don’t get any worse” is the most common plan/ NON-plan. You and your son sound like good people. Pace yourselves! It could be a very long haul—decades in this case.

and be sure the have health care proxy and we hope durable power of attorney.

best wishes
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Silveraven Mar 16, 2024
Hi there - appreciate the reply! Yes, my father-in-law doesn't seem to always grasp the endangerment aspect. He also tends to want to involve her in a lot of decision making that she really has no business being a part of due to her inability to reason. I guess it's just going to be a learning process and journey for us all... it's reassuring to know that some of these struggles aren't uncommon though. I agree - I know it will continue to get worse and I'm not sure FIL is preparing himself for that. We will need to visit the idea of a health care proxy and POA. Thank you again!
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I just read a good article Schizophrenia and aging May share a common biological basis by Allessandra DiCorato at Broad Institute . basically the brain Is Breaking down and the Nuerotranmitters can Not speak to each other Because Part of the brain has died . So The best thing to do is have a Lot of Patience and compassion . The best thing for people with dementia is Music for some reason That is part of the brain that is last to go . My Dad could remember all the words to songs from the 1920's and 1930 ' s and It made him Happy to sing . Another thing that Bought him Joy was gardening . We also would sit Outside and converse with Our neighbors and Pet their dogs . Going for a walk or drive to get a ice cream or sit On a bench and people watch . A Visit to the beach . Simple things really . Even buying a orchid or flowers for the table . Many things can be a calming effect .
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Silveraven Mar 16, 2024
Hello - thank you! I like the idea of just doing some simple activities together. It would be somethingthat both myself and 11 yo daughter can enjoy with her. And I agree - it seems she needs calming things. Thanks again!
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Watch all the Teepa Snow videos you can.
Follow her lead. Respond to her as she speaks to you.
It will begin to come naturally.
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