My husband has Dementia. I am his only caregiver. For the past 5 years, while memory and speech have begun to fail him, he has maintained a sweet, compliant personality. This has been a godsend., yet I fear that he will evenually turn violent or very aggressive. Someone from the CARE program at medicare told me that if he hasn't changed in 5 years.. he won't. Is this mostly true? Does anyone else caregive for a sweet Dementia patient?
If they were nice before, they will be nice after
If they were mean before, they will be mean after
If they were nice before but mean after...they were really mean before but hid it well.
There are Dementias like FTD and Lewy Body that effect the frontal lobe of the brain where our emotions are. These people can be violent and aggressive.
My Mom had her times of paranoia maybe some anger but she still was sweet. Her aides loved her.
Keep in mind is that once aggressive or violent behavior starts, you need to be on guard for it at all times. Their self-protective behavior knows no rhyme or reason, it surfaces when they're scared, and they can be scared of anything - a shadow that looks like a monster, a hallucination that someone else is in the house and they need to shoot it, or whatever.
Don't believe the person who told you that if H hasn't changed in five years, he won't. That person needs further training (like many who work in that field) and was probably just trying to reassure you. Dementia patients' behavior changes day by day and hour by hour. You can't predict how they will be. At all! If your H gets to the point where his behavior has alarmed you even once, have a plan in place for him to go to memory care. It can take weeks or months to get them into MC, so do the basics now and know you always have that "out."
I wish you luck as you continue to care for your sweet husband.
My Aunt (one I grew up with so knew her very well) began showing obvious signs of dementia in her mid to late 80s. Never knew what type. She was a goofy, creative, sweet woman normally but as her dementia advanced, most of that disappeared. However, no matter how "off" she was during the day, at night when I put her to bed, her old self somehow would resurface and she'd kiss and hug me and thank me profusely for helping her. It simultaneously broke my heart and gave me peace. She lived to almost 101.
She wasn't generally violent but once or twice took a swing at someone. She had delusions, sundowned, shadowed, was often uncooperative and negative. But then at night, I could still see she was still "in there".
But he did not like his routine being disrupted and would get a little mad when it was.
Other than that I truly was blessed that he never was violent or aggressive.
Be VERY grateful that your husband is still sweet as there are many wives out there that have not been so fortunate.
My mom was angry and non compliant. She would also become extremely paranoid. Lexapro 20 mg helped calm her down. Sometimes my mom's behavior shocked me. I never new day to day how she would react to seeing me. One day she hated me and the next day she missed me and thought she'd never see me again. My mom also lied and tried to manipulate. Dementia affects everyone differently.
The facilitator of the best support group I went to would say "If you have met 1 person with dementia you have met 1 person with dementia, they are not all the same"
My Husband was always gentle and compliant while I was caring for him. He was like that for as long as I knew him.
I feel I was blessed and I tell people that he was easy to care for. Friends disagree with me as they saw some of the challenges that I had but for the most part in my opinion, and that is the one that matters here he remained his true self.
Maybe you and I are lucky.
That said I was always ready for .... something to happen.
Be ready to walk out of a room.
Always have your phone, know the "emergency call button" on your cell phone.
If you have Alexa or other device while it can not call 911 you can call a friend that can make that 911 call. (there is a fee based program now with Alexa where you can make a 911 call)
You say you are your husbands only caregiver. I do suggest that you get a caregiver 2 or 3 days a week just to give you a break.
there is also the possibility that your husband might be eligible for Hospice. I had my husband on Hospice for almost 3 years. The support, help I got from Hospice was amazing. I could not have done what I did if it were not for the Hospice Team. Hospice is NOT just End of Life. A person can remain on Hospice as long as there is a continued decline that meets Medicare guidelines. I urge you cot contact a Hospice of your choice and ask about it and ask for an evaluation.
Let's hope that your husband keeps his gentle temperament.
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