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!
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 :)
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.
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!
Wishing you the best of luck with all of this.
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.
"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.
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.
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..
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.
Again, thank you!
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.
Again, I so much appreciate your kind and thoughtful response.
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
Follow her lead. Respond to her as she speaks to you.
It will begin to come naturally.