My husband, age 66, was diagnosed with frontal-temporal dementia a year ago, but I now realize he was showing signs much earlier after years of being treated for epilepsy (tonic clonic). Although his seizures are now better managed, the dementia is progressing faster. He has lost the ability to find the right words and converse with others. His cognitive abilities are very poor. His behavior is aggressive at times. He used to be handy around the house, but now he is very destructive trying to "fix" things that don't need fixing. He is easily confused and has wild mood swings, delusions, paranoia and hallucinations. He is still strong and can easily overpower me and I'm not a small woman. At times, he is sweet and passive. Other times, he's like a destructive robot when he's fixated on something. I've hidden all guns in the house and will be having them removed ASAP. While his hygiene has become worse, he is still able to bathe and use the toilet, though sometimes, he has trouble finding the toilet. I'm in the process of getting in-home assistance so I can be away for a few hours as needed, but I'm a worried that no one will want to deal with him. I honestly don't know how much longer I can manage him at home. You can't really make a timeline for planning out care for this type of disease. Any advice or comments are appreciated.

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My husband is 67 and we are in the early stages of trying to get a diagnosis. I was expecting his primary care physician to diagnose him with a vitamin deficiency or ADD and was shocked when he did some cognitive tests in the office (husband failed some of those) and referred him to an Alzheimer's/memory care neurologist. I truly do feel for you and I am sure you will find answers and compassion on this site. Definitely...DO take care of yourself as best you can. I am just now starting to try to do that as I know my long journey may have just begun, depending on his diagnosis. You are well into yours now. I am glad to hear you are trying to find in-home assistance. It sounds like you have really thought out what you need to do now.
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Reply to Monica19815

You you need to take care of yourself first because you can't take care of the person if you don't take care of yourself you need to set boundaries and you need time alone where you can concentrate and do something that you like to do
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Reply to CRaZychic1122

My husband has just been diagnosed with FLD with Parkinson like behaviours but it has been going on for at least 4 years prior

its been a nightmare getting to this point. He is 63. We live in Australia and luckily care is pretty good and a lot is subsided or free as he is on a disabled pension

he is now under the early onset Dementia umbrella and Dementia Australia will help by putting him in a special programme for same. They have directed me to a support group and he (me) will be getting nine weeks per year respite care soon, free. Knowing this has boosted my spirits and patience greatly

however, the moment he can no longer care for himself eg toilet, ( not worried about dressing or shower) or feed himself I will be placing him in care. I will not be changing diapers and such. Also my husband can’t bear the thought of me having to do it

my advice is to seek advice on transitioning to permanent care. Start getting your affairs in order for this. Make sure you have power of attorney and enduring care. Don’t leave it to the last minute. Very few are capable of looking after the ones we love to the degree they will eventually need
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Reply to anonymous882968

Rather than worry and wonder, wouldn't it be better to find out what the options are near you for residential care? Go and have a good look at them, so that when you do need to make the choice you at least won't have to dread the unknown. With a bit of luck, you will have found one you're really happy with and established an initial relationship.

I hope you do find good support at home for the time being; but given that you know there will be turning point I feel there's a lot to be said for getting ahead of it.
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Reply to Countrymouse

I went thru this with my Luz. FTD with aphasia. She finally quit talking altogether. At the most she would say one word. And that was rare. finally I had to watch everything she did to find more changes in her. Things like using a fork to consume liquids. Putting solid foods into her or my drinks. It was not fun. You may experience different things. It all depends on which areas of the brain become infected.
Watch for signs of dehydration. That may affect his ability to stand and walk.
I found an agency that provided companion services so I could go shopping for a few hours.
She did become combative when she wanted to do something no matter how wrong it may have been.
It became 27 hours a day and 8 days a week. At least it felt that way.
No two cases will be the same.
Please come here often for advise or to just vent.
I went thru this for nearly three years and did not have a single day off for myself. Just a few hours for shopping or medical procedures. I was worn out but as I look back on it I cherish every moment of it now that she is gone.
Eventually I was forced to give up because I was injuring myself by lifting her.
I wish you the very best of luck and prayers.
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Reply to OldSailor

I think you are doing a lot of good things already. Please get those guns out of the house. At least for today, get rid of any ammo and make sure the guns you have are not loaded. Safety first. I think finding care to come in for a few hours a couple times a week is a good start, then you can tweak from there. People are trained and paid to deal with those who have this illness, so although it is not pleasant for anyone it is their job and you can let them do it - with your oversight of course. If he can still focus on things, I wonder if he could be distracted if you deliberately put items that are broken into a "project box" (kids toys, a stuck zipper, knotted rope, bicycle without a chain, etc.) and keep directing him there and let him tinker with those for a while.
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Reply to GingerMay
debwind Apr 30, 2019
Thank you, GingerMay. I will definitely try that.
debwind, I cannot imagine what you are going through. Hiring a caregiver is a great idea.

As for hubby not being able to find the toilet, do you mean the toilet itself or the bathroom? If it is the toilet, I read that making the wall behind the toilet a bolder color [no light colors] that it would make finding the toilet easier. And read that changing the toilet seat to something other than white may help. Of course, trying to find a toilet seat in blue, green, black or red may be a challenge.
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Reply to freqflyer
debwind Apr 30, 2019
Thank you, Freqflyer. Great suggestion.

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