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Hubby has dementia. He is currently seeing a neurologist once every 6 months that really doesn't offer much help or suggestions. He says hubby's dementia is vascular dementia from a stroke he had 5 years ago. Looking back, I can see where the demnetia started before the stroke in 2019. I just did not realize what it was then. :( I'm wondering if we need to see another type physician? Current doc has him on Trazadone and Aricept and no matter my concerns, he always just says come back in 6 months. Memory has really gotten much much worse (can't remember grandchildren's names), very grumpy, complains of pain all the time. I am at wits end on "how" I can help him. My each day revolves around his doctor appointments for his other medical issus and what I need to do to help him. I'm not complaining, I know he would do the same for me if he could. I just don't know how to help him. He does not like to leave the house and mostly sits in his recliner all day. I'm wondering if we are seeing the wrong type doctor. Any advice/suggestions would be greatly appreciated.

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No type of doctor is fantastic at helping you with dementia because none of them understand it much themselves! There are no real drugs to help with the condition either, just to treat the symptoms as they appear and progress.

Your best bet is to read up on the subject and stay connected to forums like this one where you can ask questions of others in the same boat.

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 deal with your husband.

Go to alz.org for a ton of resources and an 800 number to call. They deal with all dementias, not just Alzheimer's.

The 36 Hour Day is another good book and more like a reference book for dementia symptoms and issues you can refer to.

Teepa Snow has some good videos on YouTube about how to handle folks with dementia who don't want to bathe, and things like that.

Wishing you the best of luck with a difficult situation.
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memaw2four Jul 8, 2024
Thank you so much. I will check this out. Yes, he does not want to bathe anymore or even change clothes. He will wear the same clothes for days. I get frustrated at the doc because he cannot give me answers. I guess I just need to accept the disease and educate myself.
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You can't help him any more than you are. Traipsing around to doctor after doctor isn't going to produce a cure because there isn't one. His decline is going to happen no matter what you do. He probably doesn't like to leave the house because as his brain loses more ability to understand, he's not making sense of the world and feels uncomfortable out in it.

Both my parents and now my husband have had dementia. I found that a PCP who is an internist with a geriatric specialty works as well as anything. Husband has labs and a Medicare wellness visit once a year and another appointment at the six-month mark. Our last six-month appointment with the doctor was a telehealth appointment via computer. DH fell asleep in the middle of it. The telehealth saves me from having to take DH to the doctor's office and the doctor still gets to observe behavior and listen to my reports. We do other appointments, such as for joint issues, with other specialists as needed.

It's frustrating not to be able to help more, but it's best to accept that this is what's happening and we can't fix it. Once you absorb that truth, the guilt starts to diminish and you'll feel less stress.
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memaw2four Jul 8, 2024
Thank you. This makes sense. I guess I am having a hard time accepting what I know deep inside. I'm so sorry you have had to deal wtih this horrible disease too.
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Sadly no doctors are well versed in the horrible disease of dementia, and perhaps that is because there are 100's of different dementias, and if you've seen one person with dementia, you've seen just one person with dementia, as everyone can present differently.
Educating yourself, like already said about dementia is your best bet going forward so you can be better prepared for what lies ahead.
I always suggest the book The 36 Hour Day as a great place to start.
It also sounds like your husband has perhaps more than one type of dementia which is very common, since you noticed signs before your husband had his stroke.
I would now limit his visits to any of his doctors, and just let him be comfortable at home in his recliner where at this point he feels safe in his daily routine.
Taking him out of his routine can be very upsetting for him as I'm sure you already know.
But I would perhaps hire an aide to come at least twice a week to get him in the shower and dressed in clean clothes as someone from the outside often can have better luck getting someone to do that than we can ourselves.
And perhaps instead of all these needless doctors appointments it may not be a bad idea to have hospice come in to see if he might qualify for their care.

My late husband had vascular dementia which is the most aggressive of all the dementias with a life expectancy of just 5 years. He was diagnosed in 2018, though he was showing signs a good year prior to that, and he died in 2020.
And he was under hospice care in our home for the last 22 months of his life, and completely bedridden.
Prior to my husband becoming bedridden, all he liked to do was sit in his recliner and watch TV all day. That was his safe place. And he too didn't like to have to leave the house for any reason, as when you have a broken brain the outside world can be a very scary place for you.

Please don't be afraid to ask for and hire help if necessary, as you matter too in this equation.
And again I would suggest giving the hospice agency of your choice a call and have them come out to do an assessment on your husband. They will let you know if he qualifies for their services(which are all covered 100% under your husbands Medicare)or if he just qualifies for their palliative care at this time.
I wish you well as you travel this very difficult road with your husband.
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Head to your local library to see what materials they have. Ask the reference librarian for assistance as well, if need be.
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