He is only 58, but his health besides this issue is very very bad. The dementia is progressing, he doesn't remember new things, he gets mixed up and confused, he has trouble speaking. Repeats the same word or phrase on a loop. Falls all of the time. Im 46, still have to work. He acts out dreams sometimes which has led to us sleeping in separate rooms for my safety. He usually wanders the house most of the night. I have a 7 year old grandchild that I have raised since he was newborn. Last night, husband decided to take grandson at 1 am (neighbors letting off fireworks woke child up, not husband) for a walk downtown! Didn't take his oxygen, its very hot here at the moment. They turned back after a block and came home, but still. Anything could have happened, and nobody even woke me up! If I mention that my husband shouldn't be alone with grandson he gets very upset and defensive. Then his tremors, speech, all of that gets worse. What should I do?
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Can you explain to his doctor and whomever qualified him for Medicaid skilled nursing facility that his needs are escalating and you feel he and your grandson are at risk by him continuing to live at home?
If you're not able to take a leave from work or quit to make sure that your grandson is kept safe then it sadly may be time to have your husband placed in the appropriate facility. And if money is an issue then Medicaid will have to be applied for.
Lewy Body dementia is the second most aggressive of all of the dementias with a life expectancy of just 5-7 years, so yes, your husband will progress more quickly in his disease than a lot of the other dementias.
Something has to change ASAP to protect your grandson and it's up to YOU to make those needed changes, even if it involves having your husband placed.
I'm sorry that you're having to deal with this at such a young age, but right now it's all about keeping your grandson safe.
I didn't know Lewy Body was so aggressive. I dont have any experience with it, as my mother is only a few years older than my husband and still in perfect health. I suspect hes had it for a while, but was hiding it, and I didn't know what to look for. He has so many other health problems that we were always focused on those things, and I just thought his acting out dreams was a funny quirk. Tremors were just something that happened as he aged. He was a bit absent-minded with bills, or misplacing his phone. But he had a sudden cardiac arrest last November, his pacemaker/defibrillator shocked him and brought him back, but things with his mind started going downhill fast after that. It makes me think of the old movie Pet Cemetary, as gruesome as that sounds.
My mother lives with us as well, after the incident the other night I made sure she knew, under no circumstances is my grandson to go out of this house at night, and never alone with my husband. Ive talked to my grandson and explained to him that my husband sometimes doesn't think right, there's something wrong in his head, and if he tries to get him to go outside with him, he needs to come and get me or great grandma even if we are asleep. But do not leave the house. And I have cameras in my living room, kitchen, and front porch. Im setting them to alarm through my phone every night if movement is detected.
Ironically, my husband was JUST approved for our states Medicaid waiver, after being on the waitlist for 2 years. They did a level of care assessment on him, and even without the dementia he qualified for nursing home level of care just based on his other conditions. But it still takes time to get him placed. Thats where I am at right now. Just trying to do the best I can for everybody until I can get him some more help.
I'm so sorry your family has to carry this burden. It no longer matters that your husband gets upset. He obviously has no awareness of his issues, or isn't mature enough to deal with it. He's so young to have this problem... ugh. Nonetheless you have to take action to protect and prepare.
Do you both have all your legal ducks in a row? Are you his PoA? If not, this needs to happen asap. You need one for yourself, and to name a Pre-need guardian for your grandson. Does your husband have a Advance Healthcare Directive? Are you in control of all the finances and assets and know what they are and how to access them?
I wish you courage, wisdom and peace in your heart on this journey.
I am not his PoA, although when he is lucid he tells everyone I am. I always sign everything for him because of his tremors, he tells the hospital, Dr's, insurance people that I have the authority for that. But I dont really legally. Im just his wife.
I am not even sure what an advanced directive is, so im sure he doesn't have one.
My grandson is never left alone with my husband. We made that change once he realized he had the dementia. I never expected him to take the little guy outside at night while I was sleeping, but ive definitely taken steps to make sure it doesn't happen again until I can make other arrangements for husband. Im trying to anticipate every scenario now to keep everyone safe.