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