Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@boppi

Aricept 5mg helped my husband for a year and was slowing benefits but after an increase to 10mg there was another significant improvement

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My journey to hell started 1 and 1/2 years ago when I think my husband was at yours’ stage and undiagnosed. He could not draw a clock with correct hands and primary care sent him to neurologist. It took 6 months to get the appointment which was most anxiety causing time for me as I recognized symptoms of a TIA. When he did finally see Dr. They immediately put him on aricept and ordered tests. Tests showed narrowing of his brain arteries which is what is causing issues, not a stroke. He was sent to a speech therapist who worked wonders and I began getting workbooks for him to do “homework” to keep his mind alert. He also does mind games on Lumosity. Com which is VERY helpful and fun. He had not realized his mental loss but now does and is fighting it with my help and encouragement. We also play “password” games and such which the therapist recommended. Hang in there! But get a diagnosis as you will need a base of comparison as things worsen. My husband also had episodes of worsening when he got tongue cancer but was undiagnosed. Now that he has successfully recovered he is improving so other medical issues could be causing some of your husband’s symptoms! Being proactive a but pushing for help is very important. I cry a lot too.

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@laughsloudly

My husband hasn’t been diagnosed with anything yet, but I can relate to others not seeing his memory issues. Sometimes they do, but sometimes they don’t. I know they don’t think we are lying, but it is frustrating that they don’t get it. Are there prescriptions that help slow the progression of dementia?

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For Alzheimer's they are often started on Aricept. When the dose was increased to 10 mg, he developed a sensitivity to the medication and had to be taken off it. Now he is on Memantine and takes one 10 mg tablet twice a day. This does seem to be helping but, the disease keeps progressing. I am glad he has the medication. He was diagnosed 15 months ago.

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@boppi

My journey to hell started 1 and 1/2 years ago when I think my husband was at yours’ stage and undiagnosed. He could not draw a clock with correct hands and primary care sent him to neurologist. It took 6 months to get the appointment which was most anxiety causing time for me as I recognized symptoms of a TIA. When he did finally see Dr. They immediately put him on aricept and ordered tests. Tests showed narrowing of his brain arteries which is what is causing issues, not a stroke. He was sent to a speech therapist who worked wonders and I began getting workbooks for him to do “homework” to keep his mind alert. He also does mind games on Lumosity. Com which is VERY helpful and fun. He had not realized his mental loss but now does and is fighting it with my help and encouragement. We also play “password” games and such which the therapist recommended. Hang in there! But get a diagnosis as you will need a base of comparison as things worsen. My husband also had episodes of worsening when he got tongue cancer but was undiagnosed. Now that he has successfully recovered he is improving so other medical issues could be causing some of your husband’s symptoms! Being proactive a but pushing for help is very important. I cry a lot too.

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Your journey has been a tough one, I’m sure. He’s fortunate to have you ❤️.

My husband is only 53 and MRI and EEG are normal, but something is definitely going on because he repeats questions/stories, has trouble solving problems that he didn’t used to have, and forgets a lot of things. He has had to stop his work as an attorney because of it 🙁

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I am an attorney, retired because of cardiac arrest 6 years ago from which I recovered. I will pray for you! Don’t quit getting his medical evaluated…we never suspected tongue cancer!

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My husband has been diagnosed with MCI. He is in denial. And angry that this is happening. He wont go to the follow-up appt with his neurologist. He's stopped all meds and I can see he needs help. How do I help him if he won't help himself? This is all new for me and I feel lost.

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@joyh1567

My husband has been diagnosed with MCI. He is in denial. And angry that this is happening. He wont go to the follow-up appt with his neurologist. He's stopped all meds and I can see he needs help. How do I help him if he won't help himself? This is all new for me and I feel lost.

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We are in (or approaching) a similar position. My husband also has been diagnosed with MCI. He would not like me taking over his meds, but he sometimes stops taking the Rivastigmine his neurologist prescribed.

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@joyh1567

My husband has been diagnosed with MCI. He is in denial. And angry that this is happening. He wont go to the follow-up appt with his neurologist. He's stopped all meds and I can see he needs help. How do I help him if he won't help himself? This is all new for me and I feel lost.

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My husband had no idea a of his disabilities until his pcp put him through a series of simple tests in our office visit and he failed them. When I got him to neurologist, he still thought he was ok but when we started playing mental acuity games together he began to think he needed help. Pcp sent him to see speech therapist and the simple help she gave him was an eye opener to him. yes, he was angry yay the suggestions of going to get help obit at some point you just have to lead them to the “water”. At one point, my breaking down and crying because I told him I was losing him and it was breaking my heart, made him agree to go along with my requests. Good Luck and get help for yourself!!! I take very small dose (.12mg) of Xanax and capsule valerian from Gaia so I can sleep at night but not groggy in morning.

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@joyh1567

My husband has been diagnosed with MCI. He is in denial. And angry that this is happening. He wont go to the follow-up appt with his neurologist. He's stopped all meds and I can see he needs help. How do I help him if he won't help himself? This is all new for me and I feel lost.

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It’s really hard to help someone who refuses help but that is the nature of our humanity. The more we feel out of control the more we try to control other aspects of our life. That can mean refusing meds, etc.

What helped with my husband was explaining (every time he took them) what the meds were for, in a way that made it beneficial for him to take them. For example - “The doctor prescribed this medication/round white pill, etc because you wanted it to be easier to remember (fill in the blank - words, dates, places, appointments). This torpedo shaped pill (anti-anxiety) helps you feel more comfortable with (fill in the blank). It really helps to frame it in terms of something they understand, that doesn’t imply “they are losing it”. If they refuse just try again later, or make a note in journal, log book, calendar, etc. That meds were refused that day (so you can document an ongoing problem in hours of a solution).

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@joyh1567

My husband has been diagnosed with MCI. He is in denial. And angry that this is happening. He wont go to the follow-up appt with his neurologist. He's stopped all meds and I can see he needs help. How do I help him if he won't help himself? This is all new for me and I feel lost.

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@joyh1567, this must be so hard for you. I don't know how you can manage his denial, but I do know that you can get help for yourself as you navigate this new reality. You're not alone and your husband's reaction is not uncommon. Here are a few thoughts:

1. Find help for YOU locally to get guidance:
- Contact the local chapter of the Alzheimer's Association https://www.alz.org/
- Schedule an appointment with your husband's neurologist just for yourself. If this isn't possible ask about getting an appointment with a social worker.

2. Keep yourself safe
When your husband is angry, keep yourself safe (and him). Would it be appropriate and safe for you to leave the room when he is angry?

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@boppi

My journey to hell started 1 and 1/2 years ago when I think my husband was at yours’ stage and undiagnosed. He could not draw a clock with correct hands and primary care sent him to neurologist. It took 6 months to get the appointment which was most anxiety causing time for me as I recognized symptoms of a TIA. When he did finally see Dr. They immediately put him on aricept and ordered tests. Tests showed narrowing of his brain arteries which is what is causing issues, not a stroke. He was sent to a speech therapist who worked wonders and I began getting workbooks for him to do “homework” to keep his mind alert. He also does mind games on Lumosity. Com which is VERY helpful and fun. He had not realized his mental loss but now does and is fighting it with my help and encouragement. We also play “password” games and such which the therapist recommended. Hang in there! But get a diagnosis as you will need a base of comparison as things worsen. My husband also had episodes of worsening when he got tongue cancer but was undiagnosed. Now that he has successfully recovered he is improving so other medical issues could be causing some of your husband’s symptoms! Being proactive a but pushing for help is very important. I cry a lot too.

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I have cried a lot too, but like you we work together every day to keep my husbands brain cells nourished. He also has a speech therapist twice a week and works out every day.
My husband also shows some micro vascular ischemia. He has had Reynauds - cold hands and feet for years.
I could relate so much to your post. How old is your husband? Mine is 76.

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