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Introductions: Are you caring for someone with dementia?
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.
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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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1 ReactionMy 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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6 ReactionsIt’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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6 Reactions@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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5 ReactionsI 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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1 ReactionMy husband is 80, almost 81. What is Reynauds, and what does it cause? My husband just started with cold hands and feet. They took him off of his statin and Plavix so worried there could be other problems from that. I have just settled into accepting what our life is now and loving each other on a different level so my anxiety is better. We are planning trips and discussing how we can handle such because he said yesterday he doesn’t know how many more we will be able to do…sad but true.
We now play music all the time as it seems to help him relax. God Bless you!!
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2 ReactionsFor what it’s worth, I am divorced and so have planned what I expect to be a period of a resident“memory care” unit before nursing-hospice.
My healthcare POA is a hospice nurse and a friend. Her role Is to identify a facility with the highest pneumonia rates in the state (they are required to report this). Pneumonia is a sick elderly person’s friend in my mind.
And once I have a diagnosis of any form of dementia she will ensure that my wishes are complied with - namely that I am Refusing all treatments for anything that could kill me -‘like heart disease or Pneumonia. Pain and anxiety meds only. Of course a DNR. I consider such illness a gift from God for me and my children. And my HC_POA will work with staff and Docs to make sure they understand. I’m aware it’s unusual but it’s right for me and I’ve covered it with my children, POAs,Trustees and Attorneys.
My mother’s family had Alzheimer’s in 80% of siblings and parents In 3 generations. Her case lasted 11 years from when you couldn’t leave her alone until She died. That’s just not going to be me.
Today I’m early on the continuum. . MRI is age appropriate. I had extensive neuropsychological testing last week and get a readout later this month.
I’m at the dementia journey station and just got on the train. Gonna make the most of whatever is in front of me.
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