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My husband was diagnosed 18 months ago with Alzheimer's. Doctor felt he was between stage 3-4.


He continued to work until last week.


Question.... Our daughters and I have noticed changes in his behavior over the last 5 months. When he travels, he's exhausted and naps more. He gets really agitated or upset if it's too much noise being made, he has a very short temper, he feels people do things to him on purpose (road rage, to someone in his way and he missed the elevator, to him wanting to go and get physical with them, to taking a sandwich from our granddaughter telling her it was his). He has outbursts and never apologizes. He called me last week crying from work, saying he's done. He's on LTD now.


He says he knows he's getting worse and feels in 3 years he may not know anyone or won't be able to leave home because of his anger.


Soooo....when he's home , he's happy and comfortable and almost his usual self.


Is this normal????


Any help would be much appreciated!!!


Its his behavior and reasoning that's being affected the most. His memory is still fairly good, but a few blips here and there.


We feel travel must be overwhelming to him, which it wasn't before...


He has a few symptoms from all the stages ....mind boggling.


I know he'll plateau....


What stage is this???


Talk about one heck of a emotional roller coaster ride!!!


Help....

The phrase is: "If you've met one person with dementia, you've met one person with dementia." In other words, dementia has a different impact on different people. There is no "normal."

I certainly agree he should not be driving if he has bouts of road rage. You will have to try different approaches--trial and error--to see what works best. You might find it helpful to take a look at a 50-page pamphlet/book by Jude Welton, "Can I Tell You about Dementia" (Jessica Kingsley Publishers, 2013) because it does a good job of explaining how a person with dementia sees himself. However, your husband sounds much more aggressive than the imaginary person in this book.

As several people have suggested, a prescription of some kind could be helpful to treat the aggression and anger. There are no medications that do much to stop dementia, although it can be slowed a bit. However, the behaviour changes in dementia can be treated, but you need to get the doses very accurately to treat the specific behaviour.

I hope this is helpful
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Reply to BritishCarer
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There is NO way he should be driving with Alzheimer's. Take away the vehicle keys.
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Reply to Llamalover47
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First of all, I am so sorry you are going through this. How old is your husband? My husband (of 5 years) has at the present time "mild cognitive impairment" according to his neurologist. The next exam and testing is in December. The first thing his PCP did was prescribe my husband 5 mg of Lexapro daily. Wowza...it improved his anger, nastiness, paranoia, rage, etc. a LOT. My husband retired 5 years ago but we still travel in our RV...even though I know that may not continue much longer. I am not a doctor but I wanted to share with you that the Lexapro helped my husband immensely...and, by default, has helped me and others who come in contact with my husband.
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Kookie23 Sep 29, 2019
My husband is 65. Good info. I'll bring this up to the doctor and see what he thinks. Thank you.
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"He has a neurologist, but he doesn't want to see him because he gave him the bad news of it being Alzheimer's . I've talked to our family doctor and they feel the next step may be prescribing antipsychotics....."

This makes life difficult... Any chance of getting the neuro and PCP to coordinate, so he goes but doesn't "see" the neuro, but gets the testing needed? Sometimes we all (docs included) need to compromise. Maybe telling him (fibs) that the test might provide a way to help him (isn't really a fib - no cure, but any meds that can relieve some of the symptoms...) He clearly is aware of the Dx and of how he has these issues, maybe he would be more willing to go if he thinks something might help?
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Reply to disgustedtoo
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"Is this change in behavior and reasoning normal?"

Can be. Every person can experience different behaviors at different times. Some never have all the behaviors listed, others follow it like clockwork! Every person's "journey" is different.

You didn't mention age, but he was still working until recently, so he isn't likely that old - how sad to get this affliction at a younger age! Our mom was over 90 when I realized she had issues. I feel so bad for those in her MC who are early 60's - younger than me! Mom had a good long run. It is still so sad, but she enjoyed a long good retirement, much of it with dad.

Family/those who see/are with the person generally notice behavior changes first. Many people can "show time", which allows them to seem 'normal' for periods of time, so often it isn't noticed by others. Sometimes even doctors don't realize it.

Being "happy" and "comfortable" at home is also common. Many people become 'self-isolated'. Although we didn't have a dementia Dx for dad, he was prone to not wanting to go out, but also not wanting to stay home alone if mom went out for any reason.  He also had some outbursts, which was totally out of character for him. Mom also started self-isolating in the early stages. She used to go with the other condo ladies to the Senior Center activities, but then started making excuses or just not showing up. She would often try to cancel appointments ('try' usually meant she would write cancel on her calendar, but neglect to follow through!) She actually might have started the "journey" before I realized she had a problem, the 'signs' were not apparent until after she started repeating herself often, sometimes during one conversation. Hindsight says perhaps some of the other oddities were likely signs as well, easily missed (she lived alone.)

Depending on what the actual cognitive issue is, there are some meds that can alleviate some of the anxiety, which can also reduce anger, fear, etc. Staying active physically, mentally, and socially is good for anyone with dementia, but it can be hard to get them to comply. Routine is good. Travel is probably out of the question unless the docs can find medication to help. I am not a big fan of meds, but one that we had to use was Lorazepam. If treated, short outings might work. Mom's condition is likely vascular dementia, but first UTI after moving to MC caused severe sun-downing (generally this occurs later in the day, but can occur at other times. In her case, it was the UTI that caused it.) Second recent UTI resulted in nighttime bed-wetting, so UTIs can cause odd behavior too (yes, I was a skeptic, but have seen the light now!) She hasn't needed the Lorazepam since, only during that first episode. The bed-wetting stopped after the UTI was treated.

"He has a few symptoms from all the stages ....mind boggling." Again, every person follows their own 'path' - no one-size-fits-all. Although they list stages and symptoms, he could be exhibiting symptoms from multiple stages.

I would, if you can, get a test for UTI, even if you start with an at home test. If nothing else, you can rule that out. It isn't expensive or invasive, but might resolve some issues if he has one. Others have recommended getting a neuro doc involved, to find the source of this condition. GPs can say Alz, but there are so many forms of dementia, it often needs to be narrowed down. It can sometimes be treated as far as alleviating some symptoms, but it must be carefully done. Some meds can't be used with some types of dementia. Sometimes it takes some trial and error to find what works best. While there is no cure, anything that can make life easier for him and you is worth trying.

"Talk about one heck of a emotional roller coaster ride!!!" More like the 'cyclone' rides!
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"he feels people do things to him on purpose (road rage, to someone in his way and he missed the elevator, to him wanting to go and get physical with them,"

If he is still driving, now may be the time to take away his keys. He is not safe behind the wheel if is is getting road rage.

Memory is a strange thing with dementia. It seems to depend on the type of dementia and which parts of the brain are affected.

Long term memory seems to be the last to go, but reasoning, rationalizing, learning, recognizing people, tasks and short term memory are all impacted differently.

My Dad has not be given any diagnosis of Dementia and has been involved in two post stroke cognition studies and 'passed' with flying colours, once was earlier this year. Yet, the other day, he could not figure out how to answer his cordless phone, he did not know which button it push. My son was staying with him and I brought two cases of tinned tomatoes. Dad insisted that they could not be put in the kitchen cabinets. There was plenty of room for them in the cupboard on shelves that Dad can no longer reach. Dad is a food hoarder, but as this was food for my son, he did not want it around. Weird right?

My step dad was an accountant and retired from his last accounting job, Treasurer for a Provincial Association 2 months before his death. I had the task of going through the computer files for Mum. SD could post expenses and income in spreadsheets that were already set up, but he could not track and find mistakes. He had saved hundreds of Excel files on the computer with nothing in them. Each one has been given a strange name when he saved it. I had to open each one to check that it did not contain anything important before deleting it.
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disgustedtoo Sep 29, 2019
Some behaviors are just so strange! I do wish they could find out why so many people are getting these conditions. Some say it is because of medical interventions, allowing people to live longer, but that makes no sense when some are barely in their 60s! Our mom didn't develop this until she was around 90. She has outlived all in her generation, both sides of the family, and many friends. In her case, there are several reasons why, such as high BP (been on meds for long long time), and hearing loss (alleviated mostly by hearing aids, but hearing loss can be suspect.)

Even in MC, those of those who moved in when she did (it was newly rebuilt/opened, and she was the first resident) and some who came after her are already gone. She just hit 96 and is in year 3 at the facility. Mostly her issue is short-term memory loss, can't learn/retain new information, but it has regressed as well (forgot condo she lived in for about 25 years after 9 months in MC, focuses on previous home and her mother now!) Otherwise, she keeps on ticking along...
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I think my mom's memory was also okay for a little while, but her moods were all over the place and there was a lot of paranoia. She still likes to go out once in a while, but mostly she just wants to be "home", which is now assisted living. Anything new has confused her for the last 10 years.

My former boss was diagnosed with Alzheimers 10 years ago. We had all at work noticed the changes in his behavior before that, but he could teach art history brilliantly. He retired, and called me one day to tearfully report his diagnosis. They gave him 6 to 10 years to live. But now when I see him at parties or the grocery store he knows me immediately and remembers all the funny, interesting, and tragic happenings about me from when I worked with him. He is different, yes, but compared with my mom, who was diagnosed at about the same time, he is doing so well. As others say, it is different for every person. However I do intend to ask his wife what he is doing to have stayed so much in the world.

I think for your husband it would be good to plan the outings in some way that won't be confusing, such as making sure there won't be a lot of traffic at that time, explaining constantly what is happening, where you are going and what to expect when you get there. Wherever you go make sure there won't be a lot of unexpected noises and a lot of movement. If there are, explain what is going on to him.
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Reply to ArtistDaughter
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By the sounds of what you and your husband are going through requires his medication to be adjusted. Traveling can be very upsetting to those with Alzheimers, because there is so much going on at once. Over stimulation to their senses. I found this to be true when I was Mom's caregiver and now my husband. It is a good idea to keep activities and environment as calm as possible. It will be easier on you too.

I find saying, "That's ok" often is also calming. When my husband starts to get upset about his loss of memory, etc. My calming words of "that's ok" and then changing subject helps.

My informing family members not to be surprised at anything he says or does, but to handle it by not reacting, and change subject or focus. Agree with him, change subject. Never say I told you that, or remember. I have to remember, he can no longer learn and has forgotten most of what he did know. "That's ok". All of the above has been a great help to all. We live in the moment, I try not to think about what might be ahead. The saying....Don't try to cross the bridge til you get to it, no one has been successful doing that so far! It is a journey of one step at a time.
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disgustedtoo Sep 29, 2019
Good advice for working through issues that pop up. Agree, don't argue or correct. Change subject or refocus onto something the person likes/enjoys. Ensure any family or friends who might still interact is aware and knows how to handle it as well! All good!

These tactics don't always work, but trial and error might find the right combination, as everyone has different issues/symptoms and also different reactions.
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Dementia sufferers do best with routine and usual surroundings. Anything "new" can confuse, irritate, or scare them. So anger and even violence can be a reaction to this "threat". He may be experiencing anxiety since he knows he has Alzheimer's and knows it is progressing. Try to create a restful environment at home with reliable routines. Also, check with doctor about meds that might help him relax.
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Kookie23 Sep 29, 2019
Thank you !!
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This sounds like a repeat of my dad. And he was NEVER an angry person growing up but his outbursts are constant now and he is oh so frail. At age 93, we just had to move him to assisted living (doctor's orders) and so far it is a disaster. He just wants to go home but it is not safe. He will be fighting this move in the court (I am guardian/conservator) but he now requires 24 hour care -- $22,000-plus dollars a month to stay at home. I think he likes it there because it is what he's known for the last 35 years but it is no longer safe for him. Yesterday, I agreed to bring in caregivers 3 days a week in addition to the cost of the assisted living. We moved his car to the assisted living facility and they will be able to get him out on errands just as they always have. I told him we would have to cut back on this at some point after he gets settled but that may never happen. He is also not happy that I have now forwarded his mail to me so it is not sitting in his mailbox at his house when he is not there (he was checking it numerous times per day). I will start putting in change of addresses to the assisted living facility for many of his bills so he can be getting some mail. Baby steps. Too many changes at once.
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disgustedtoo Sep 29, 2019
I did the temp forward of mom's mail, so I could contact all billing and have it sent to my PO box. Once the forward expired (only about 1.5 months), she would get the "junk", just not the bills, statements, etc.

It did take additional effort for some bills/statements. Insurance only 1/year bill, so I missed that - when canceling the policy when we took the car away, she got notices and upset it was canceled! Pension and SS are both Federal, and they don't allow any kind of POA - they have their own rules AND those mailing CANNOT be forwarded. Then she'd forget the bills, but complain that all she ever gets in the mail is junk, sales flyers! Sometimes you just can't win!

I would change address for his bills to you, not the AL. Once those are done, THEN forward his mail to AL. Once mom moved and all important mail was redirected AND we were getting ready to sell the condo, I put in for regular forward of mail.

Forwarding is only good for a year, but now the postal service will slap on a "new address" sticker before returning any first class mail, and those places DO update the address - I get all her junk mail and then some now too. I learned about the stickers when helping the cat shelter set up/update their mailing lists - many of the envelopes for returned mail had these new address stickers. I used those to look up people to confirm before updating.
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Kookie, the stages are only guidelines, every person with dementia will present differently. There are no two cases the same. His symptoms and behaviors will be all over the map. Behaviors become unpredictable. They all reach the point that travel and excess stimulation become impossible. The less change in daily routine, the better. This is the world of dementia.

Is he taking any meds? Sounds like he is experiencing some paranoia, there are meds that will help with that.

As Barb said, get him to the doc. Is he seeing a gerontologist or neurologist? Often times General practice docs are not familiar with appropriate treatments. And if at first a med does not help, let the doc know and request another to try. It often is trial and error to find a med that will work effectively.

Find yourself and daughter caregiver support groups.
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Kookie23 Sep 29, 2019
Thank you!!! What you said makes sense . He has a neurologist, but he doesn't want to see him because he gave him the bad news of it being Alzheimer's . I've talked to our family doctor and they feel the next step may be prescribing antipsychotics.....
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kookie, this is surely shocking and sad! And he’s still got so much going for him. I’d read, read, read, and find videos on YouTube. We can’t plot their course per se, but it helps to know about the various things that can set them off and then work around. My 87-yo mother has a similar profile to what you describe, has had vascular dementia for years, and still her memory isn’t that terrible. But the social, emotional issues can be real hard to navigate. Blessings to you all.
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Kookie23 Sep 29, 2019
That's what is soooo confusing for us, is it's not so much the memory leaving but it's the reasoning and personality changes !!!! Thank you.
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I just wanted to share something that my LO told me when she was in early stages of dementia. (She was diagnosed with VD, but, later doctor thought mixed with AD.) She seemed much happier at home and with me around, because, I brought her comfort. She would tell me that things seemed like a dream a lot and would ask me if things were real. She was easily confused and if I was there to explain and be her support, it made her more comfortable. I found that outings were not a treat for her. They scared her. She was confused easily and that embarrassed her. She was more comfortable being in her own environment where I was taking care of her and protecting her. She would often say, I trust you. Later, she agreed to go to AL, for the same reasons. Being alone became too scary, plus, she began to worry and cry a lot. She would also have outbursts, but, they dissipated over time. Plus, she went on meds for anxiety/depression and that helped a great deal. Different people act differently, though, so, you can't count on anything.
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"I did talk to my PCP and she also told me to be prepared and to watch for the anger . .....I do really appreciate this forum, it let's me to talk to others in the same situation."

Kookie, you wrote this a while back. He needs to go back to the doc for meds to address his mood issues.
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