I’ve been lurking here for sometime trying to look for some tips on how to deal with this dreadful disease. Currently, I’m at my wits end and need some suggestions.
My husband of 40 years began having symptoms of Demential about 6 years ago. Initially, more of a problem with change in personality and temper than memory and cognitive loss. It took me 4 years to convince him to see a neurologist. Stage 1 was diagnosed 2 years ago. To this day, he won’t admit to having anything but a “slight” memory loss. Still insists on driving,trying to pay bills, etc. Even though he had no short term memory and has a difficult time even trying to pay a bill. All this I could deal with. But it is the violent temper and outburst that are literally making me ill. I am beginning to have bouts of very high blood pressure, chest pains and panic disorder. So far, no physical abuse. But, I have been called things I never thought in my wildest imagination he would call me. Has hoped my cancer would return and it would not be curable, etc. and on and on. He asks me on a daily basis to get out of the house and never come back. And, has begun to hurl things at me. I’m sure you all have heard so many of these things. With each day, he is more and more often out of control. I have become his whipping boy and am to the point of worrying about my own health He has not had one nice thing to say to me in a year. If he speaks to me lately, it is to shout an order.
This is also effecting our beloved little 12 year old dog who is in Early Stage Kidney Disease. If I had somewhere for our dog and I to run for haven for a few hours or days, it might help. But, as luck would have it, my 4 best friends are no longer within drivable range. One, sadly passed away and; the others have moved from the Atlanta area to begin retirement elsewhere. We have no children and no relatives nearby.
Frankly, I’m considering divorce. Maybe something like moving into a condo and returning each day to prepare food, etc. for him. At what point do I say “you are not going to cause me to have a heart attack or stroke” ? My GP has no suggestions except to prescribe Xanax My husband’s neurologist sent me to a psychologist. She actually had no helpful suggestions. Just to say he probably doesn’t mean it…. Very helpful when I’m in a hospital bed with a paralyzing stroke. I described the situation to someone recently as living with an out of control spoiled 8 year old whose tyrant father rules the kingdom.
In all my readings, I’ve never encountered mention of spouses having to move out. Am I so callus?
I've been on the site for over 8 years and have read that many felt the same way. The only one I know who actually did divorce was Kitty. If you go to "Search" and type in "Kitty:", then click on "comments" you will see her over 200 posts. You will need to go back to her early posts in 2008 to get the background. Jazzy, too, has had emotional abuse. I think in her case her husband has pre-frontal dementia. Joan's husband's behavior towards her changed, too. So did mine. In both our cases, the behavior leveled out with time. In my case, it seemed to be an early reaction. I've thought since that it was anger on his part when he realized, as he said to me, "I'm losing my mind." I think Wolf, too, has written that his wife went through this in the early stages and that he had thought of divorce. My apologies to anyone I might be misquoting. Perhaps a neurologist could help your husband. I would suggest, too, that you see an elder lawyer to protect your own assets before doing anything major. The one message that has come through again and again was that the spouses who were abused found a way out, or around. You are right that it is destructive to you, and it must not continue. Or if it does, that you find a way to protect yourself. One spouse had her husband admitted to a care facility, and if he started in on her when she visited, she would leave, with the clear message that she would not stay and let him treat her that way. Wishing you the best.
Thanks Mary75, I will certainly take a look at "kitty's" posts. It seems that each day as the memory and cognitive skills lessen, the rage increases. He can still carry on clear, thoughtful conversations and therefore, not ready for a care facility. An elder attorney is a very good idea. I shall look into it Thanks for the suggestions
Hi liz123, I have frequently had the same kinds of thoughts. Have looked at several nearby apartment complexes and analyzed the finances to prove that I could afford to live separately and just come here to give him meals and clean up a bit. Later hire a caregiver if he isn't safe to be alone. So far he doesn't wander. I read here that if you divorce, the courts won't allow you to manage his affairs. I decided I would be a better bet to handle his affairs. He has trusted me to manage the finances for years now without a fight. I am lucky that way. I also read here to create a safe room. I use our guest room. Added comfy chair, tv, speakers for mp3 player, comfy clothes. The door has a lock. I also locked up the hand guns and got my BIL to get the rifles. Sometimes I use the room for just a few minutes and that is enough for it to be a brand new world for him. Once in awhile I stayed in there for a few days, coming out only to give him food. I go with him to his GP.DH doesn't even object when I talk to his doctor about his aggression. If yours would object write a letter and have the receptionist give it to the doctor first. His GP or neurologist should prescribe something for the aggression. So far I haven't gone that route because he changes so fast to saying he loves me and I am the best girl. But his doctor is a phone call away. My dog and I are on low dose antidepressants. That works better for me than Xanax would. I get mad about taking meds because he is sick, but it is better than crying all the time, hyperventilating and having chest pains.
My friend is a hospice RN. She says when her Alzheimers patiente refuse meds or other things she will leave the room and come back a few minutes later with the demeanor of Hi I am your favoritebcaregiver and, of course, you are going to take this medicine. I have used that attitude many many times. Like insisting on riding with him anywhere. Now he has difficulty following my directions so I am not letting him drive any more. So far I am just finding excuses to take my car or just stating the fact that I am driving. Last time I did that with his truck he got real mad and stated that "This is MINE!" I got ready for a big argument but he got in the pax seat. Call me astonished.
I know some people who have divorced, mostly for their own safety (usually physical safety but also emotional and financial). And not just safety of the caregiver but also for members of the family, usually children.
Keep in mind that if you divorce you will lose the ability to care for your husband. It is unlikely that you will be able to make any financial or health decisions for him. If you feel unsafe living with him you can consider a separation (either legal or just living apart).
I take your concern about your safety seriously. You need to trust your instincts on this one. His dementia makes him unable to see his own deficits. I suggest removing any firearms from the house and locking away knives. Look into how you can take over finances. Put as much money into a bank account in your name only. Can you get his doctor to report him to the DMV? Can you do so anonymously (it is important that you do not appear to be the bad guy to him over losing his license). You should also contact your auto insurance company about his dx to ensure that they will cover him, if he is in an accident (even if not his fault) and the insurance company was unaware of his dx, then you can be sued for everything you own and the insurance company will have the right to not cover him since his medical condition was kept hidden from them. If the insurance company will cover him (not unusual) demand to get that in writing from an insurance company lawyer (not an agent).
For bill paying can you have all your bills converted to digital delivery only and no paper bills? Can you set up computer access to your bank account(s) and not allow your husband to have access. Same with credit cards. Most of my bills are automatically charged against my credit card and I pay the credit card by transferring money from my bank account to the credit card. Much easier and it make all finances invisible to my wife (not an issue now since she is in an ALF but was handy when she was living at home). Also much easier for me.
My DH has bv fronto, vascular and ad and when he was at home with me he would get very aggressive with me. I was told to go to the police station and tell them about his behaviour and ask them to come really fast if they got even a drop off call from my number. They said they would and that he would then be taken to a hospital and would likely be placed. Not long after that visit my DH went into LTC. He continued to be agressive with staff and with me, so my visits were in an open area where there was always staff coming and going. Things have settled down resently with his behaviour towards me but staff still get the raw end of his tongue. He has never touched anyone but you just never know. Remember that it is the disease not him but you must protect yourself. Make sure you have a key to the house hidden outside. I carried my cell phone, a credit card, interac, drivers licence and a twenty dollar bill in my pocket at all times. My car keys have a crimbers latch on them and they were attached to the belt loop on my jeans. This way if he came at me I could get away and into the car for safety. I could eat or get a room, whatever I needed to live outside the home. I never had to do this but it sure made me feel better. Before divorce thoughts, see a lawyer.
Paulc's suggestion about paying bills online is the way to go. I have been doing that for years. Now DH has no idea what to do with his computer so I believe the money is safe. I am even able to handle his RMDs with Vanguard. They were actually the ones who suggested the way to set that up because he had so much trouble answering the questions on the phone. My insurance company.said they will cover him as long as he has a license. When I decided not to let him drive any more and policy was being renewed I asked their advice and they said it is recommended to keep him on the policy as long as he has a license. I will do that. I will wait a little while and then try to sell his truck. Jazzy, that gives me some ideas. I think I need to put together a go bag and leave it in the car. Several times I have packed a bag, loaded the car and prepared to leave for several days only to have him beg me to stay here because it is dark outside dontcha know. Sometimes I stayed because he had calmed down. Sometimes I just went anyway and just went to the movies.
Thank you all for your sound suggestions. For years, we've been taking care of finances online. And, months ago he asked me to handle all this. Then, when he seemed to realize he was getting worse, decided he must take care of office work because it would "help his mind to come back". Now, I go down after he is asleep and reverse what is necessary. I never thought of an anti depressant. Made an appointment with my doctor today. Seeing an elder care attorney is on my agenda. A legal separation would be fine with me . But, I also must protect myself financially as well as from physical harm. I recently discovered his will is among the missing. Supposedly, he rewrote one about 8 years ago. None can be found. And, now, he tells me he would never give such a F----ing B--- any of His money... Nor, will he give me POA. This is after 40 years of aiding him through serious illness, etc. and, until recently, had planned to make this illness as easy as possible for him... Thanks again to you all
liz123, I was where you are now, a number of years ago. The constant anger and rages over the most minute thing. A number of times I just had to get out of the house and go somewhere. I constantly contemplated leaving. Once in a while I would tell him I'd had enough and tell him I'd leave. They seem to understand threats of that nature. That usually brought some peace for a day or so.
I finally got a "geriatric psych" consult for him with a doctor that under stood these behaviors. Long story short, a number of drugs helped him (and me) to better control his moods, this saved my sanity. I am a firm believer in "it can't be fixed, but, it can be medicated!" At this point, I know a lot of people start with things like, "oh, but, you don't want to drug him". All those who object, raise your hand, now use it to cover your mouth.
As for your trying to take care of him, I'm sure others have said this, but, it bears repeating. Try not to take what he says personally, (easier said than done, I know) it is the disease not him talking and saying all those nasty things.
cvh, thanks for your thoughts. I very much considering the shock treatment of leaving. Possibly, would make him realize life would be very difficult here without me.
His neurologist suggested I bring him in and we could get him on some meds. I can't get him to even consider this. He "has no problems other than a little memory loss. I cause the temper rages since I am such a horrible person" Any and all drugs would be fine with me. Could I ask you what meds did your husband take for the mood/temper problem?
Try calling the neuro office to get them to call in a prescription to your pharmacy. Someone here suggested telling DH the meds are for a healthy heart. If they have to see him I don't know how to convince him. My DH wouldn't go for 3 or more years. I finally talked him into going for a prostate follow up. It has been difficult for me to learn how to lie. Someone here calls them "fiblets". I like that. Sometimes I just make the appointment and just tell him that morning that we are going out. Or to see his doctor. Fortunately he likes his GP. Neither of us liked the neuro and I haven't convinced myself to go to another one
Bev They are called " dementia fi lets" and they work most times and are a big help to caregivers. Telling him the meds are for his heart or blood pressure could solve the behaviour problem. You not being able to convince yourself to take him to another neuro? Could this be denial on your part?
Liz123 try asking him to go to the Doctor and prove it's not him. Make sure his Doctor is aware of what you are trying to do. My DH still says there is nothing wrong with him and that it is me. It's part of the disease and you must find ways to get him to the Doctor and on the meds that will keep you safe. You notice I said" keep you safe".
Bringing a good fibber and actor are things we must all learn very fast as dementia caregivers.
Yeah, Jazzy, I have been thinking of trying to find a beginning acting course or book for ages. Am getting better at dementia fiblets and just keeping my mouth shut.
I don't think it is denial on my part. DH is on Aricept. We tried Namenda twice and he is one of the ones with extra confusion as a side effect. He had all the tests to see if there is a treatable cause. As expected, because of the course this followed with his mother, he is in perfect health. Doesn't take anything other than Aricept, B complex vitamins, and now Flomax to help with the urinary incontinence. Now we are limiting dairy and that has nearly stopped the explosive diarrhea. The aggression is slowing down. He is 73 and can be expected to live for DECADES. Anyway, I haven't made an appointment with another neuro because I know of no reason to do that. I don't see any benefit to doing that. Someone here mentioned a geriatric psychiatrist. I might look for one of those. But again, I have no idea what to ask for. Don't see any treatment possibilities. His GP can handle current prescriptions.
The best thing is to get him to a doctor that understands Dementia. I mentioned a Geriatric psychiatrist, you could also go to a neurologist or a memoy disorder clinic. Getting him there is another thing. Where I live in Canada, the Geriatric Psych came out to our house. Failing that, it is ok to tell fibs of where you are taking him.
We got him onto anti-depressants, as well as trazodone 4 times a day for anxiety and sundowning. If that didn't work we were going to go to something stronger like respiridone.
There are a number of drugs that could be helpful, each case is different. Don't give up hope.
You also need to do some reading on dementia, and how to deal with moods.
Most of all, if a dementia patient insists that the sky is purple, then agree with them. Never ever disagree about anything. The answer is always "yes you are right". When all else fails look them in the face and say "I'm sorry", even if you know he is dead wrong. Never argue with them, the logic switch is broken and you will never win an argument with them. Don't try to bring a person with dementia back to reality. They live in an alternate reality and you need to agree with it. Sometimes it is so difficult to say "yes" to them, (remember the "fiblets"), but it is the disease talking not them. Remember, Never disagree, never argue, they are always right. If it is a difficult issue such as they want to drive the car, tell a lie, say the car is broken. Once I understood this, things went a lot better. This is the reality of how to get along with a dementia patient.
All of these suggestions are excellent ones. I wouldn't have known how to handle my husband if it weren't for suggestions like these. Fortunately, my husband and I had our POAs done before the dementia occurred, thank goodness. If not, like you Liz, my husband wouldn't have wanted to give me power of attorney during the early stages of dementia. He wasn't himself; if he was he would have given it to me in a heartbeat. As it was, he was sure I would give all our money to my sister!
It took me many months of learning how to fib (I am not a good fibber) but once I did things became easier. The hardest thing for me to do was to learn to walk away when he yelled at me or said horrid things. It hurts, terribly, but if you don't want your lives to be a constant battle, you must do it. I actually had to go on an anti-anxiety pill and antidepressant to better cope.
When our neurologist saw how difficult and belligerent he sometimes was, she prescribed Seroquel. I never would have been able to keep him home for eight years without it. Never. He is now in hospice in a nursing home and is still on it, not because he is belligerent but because he constantly pounds on walls, tables, himself, so the hospice nurse said he must stay on it so he won't hurt himself or disturb others. He is sweet right now, so different from what he was two years ago.
Follow these suggestions. They worked for me, they might work for you. At least try them. They will make your life so much easier.