Eight years ago my husband was diagnosed with Dementia. He had previously had a heart attack and lost oxygen to the brain. He has refused to believe there is anything wrong with him and has convinced his primary care doctor that he is fine and I am the one with problems. I am very glad I found this site because I really don't know what to do. I have been living 8 years of hell. Please help
My aunt said "if she cant take care of herself then she's going to a home"....and so I just took care of Gram....did it for 6 years....I didn't call social services because I thought they would put her in a home...and at the time, Gram was happier at her home...
And you are right, medication doesn't make everything hunky dorie...but it made life easier for both Gram and I. I was happy to not to have to see her full of anxiety....
My Aunt (her daughter) lived down the road and would come and visit gram every couple of months for a short time.
She thought "oh no! Xanax is bad! It's addictive!" so she took them away from her. That made my job harder....
Then because she didn't spend much time with Gram and didn't go to all the appointments and didn't believe me when I told her how bad things were with Gram....she took away the caregiver (20 years before gram had taken out an inhome care insurance)..it only helped for part of the day or 3 full days. I used it to help with the NIGHT HOURS, so I could go home and sleep, knowing someone was there.
But my aunt took away her medications....and then took away her caretakers, saying that Gram was upset about having strangers in her house. Never the thought of the fact that I may like to sleep in piece a couple nights a week. Plus I was raising my own family...at the time...
So there was Gram, no medication and no caregiver.
I had two choices....leave gram alone for the night and go home and sleep as I had hoped......
or stay with Gram each night....
Aunt never stayed more than a half an hour or so...one time she didn't show up for 8 months...and stopped in to say "hey' and leave.....but when she was there Gram was happy to see her (gram never realized she hadn't been there in 8 months, because she was so loved and cared for by myself and my kids, she had lots of conversation and everything was taken care of)....so when her daughter saw her gram said "everythings good".....well ya! Things are looking good, because we are doing it...she is on medication (not enough to put her to sleep, just enough to make her not scared about life)....and she had family.. and the kids and I could go home at night because a caretaker is coming in.
I decided NOT to stay....
My aunt got lots of calls, each hour...."normally she wouldn't answer the phone, not even when her mom was having a heart attack at night"...when I asked her why she wouldn't answer the phone, she said "Im sleeping at that hour"... hello! We all are!
But that weekend...her daughter took away her medication and her caretakers.....and her phone rung and rung.....she gave Gram back her caretaker and Xanax....
I put so many years into trying to work everything out for Grams good and in one shot, she comes in and changed it!
If I had stayed with Gram. her daughter wouldn't have gotten the calls all through the night and days......her daughter would have thought everything was hunky dory...
It was a very sad and hard decision to make, not to stay with Gram....
sorry...I got off topic...
Your husband must have a bit of good memory still, because he remembers you left and is threatening you about leaving again....
About your kids, it might be best that none of you actually confront him....it may make him feel like he cant trust anyone, he may feel that his closest people (family) have turned on him. It's not the same as doing an INTERVENTION for someone on drugs.....the interventions have to be between you and your grown children, and you SHOULD include them in on EVERYTHING. You cant do this alone. It will break you...allow and ask them for some help. For instance, instead of saying to your husband "Im going to break I need to get out of here"... maybe ask if your kids will come sometimes and say "Im going to take mom to the store,, to help me pick out carpet." or whatever excuse... then you can get away...and cry...and your kids are going to have to get use to realizing that this hurts you too....you cant stay strong forever. I did it for many years...in the end we will break....and it can effect us physically.
I hope you have family who will step in and work with you.
Arecept caused hallucinations for my grandmother and my father in law...as did another memory drug...I think it starts with an N...cant remember the name now. Hallucinations make everything 100 TIMES WORSE. If you notice any signs of that...get them off that drug.
I think people with enough money (not myself) to hire help or place their loved one in a nice place...are fortunate. Hired help at home can be very beneficial, even when the loved one FIGHTS IT...we just have to use anxiety medication....so that they will be more relaxed and get use to a NEW FRIEND (helper)....and you can sleep with both eyes shut....or go cry alone somewhere...
I would also suggest you find an in person support group. My personal doctor recommended I go to done after my grandmother died (last November) it's called Caregiver Syndrome Support Group. I may go sometime. But I think had I gone when I was still caring for Gram (over 6 years full time) it would have really helped me a lot.
It concerns me that your worried he might snap, since he doesn't trust you. Sometimes you have to talk to doctors privately FIRST, before...without your loved one knowing you have spoken to their doctor....tell the doctor what is going on...run up that doctors phone line if you have to (I did)...get the doctor on the phone...tell him/her everything.....then when you and your husband go in...the doctor already has a heads up, but your husband doesn't know...so you are not 'the enemy" .... if your doctor doesn't believe you...record it...phones make it easy to video now.....ask one of your kids to come over and record...while your talking to your husband and distracting him....show it to the doctor....maybe one of your kids has to come for a week, to catch the 'ACTING UP' on video..it will be worth it, because then your husband will get drugs that help these type of episodes.. Memory drugs like Arecept, are NOT going to help with the anxiety...and your husband IS ANXIOUS...once you get that under control...things will get somewhat easier...
It sounds like your husband may be in the beginning stages...sometimes the progression moves very slow....and in the same person...progression can all of a sudden take a quick turn...
the hardest part for me was getting the right medications to help with the PARANOIA, ANXIETY or DEPRESSION....three different drugs...sometimes more...serroquel for paranoia....if it doesn't work, up the dose, don't give up and think it didn't work before you up the dose and maybe give two or three times a day...we gave up the first time, thinking it didn't work...it did work..when we tried it again a long time later and upped the dose...I learned from a group similar from this, that sometimes we need to up the dose and / or make it more frequent.
Celexa or lexepro (try celexa first, it's less strong)...for depression.....
atavan or Xanax for anxiety. We put it in with Grams daily med case....we never told her what it was....that might be hard for you...since your husband knows... adding it to a little pudding might work....I would suggest ativan as it lasts longer (I think)....Xanax wasn't normally enough for gram until we had her on the seroquel and clexia....I may not have spelled the names right...
He ,also, sleeps a lot; most often 10 to 12 hours. I am relieved in the evening when he goes to bed at his early time, as he sundowns and can get rather agitated at times. I have mourned the loss of a husband and the man I knew. I don't think most people realize the grieving we are going through along with everything. I have a special spot I go to to cry and thankfully I don't find myself there as often anymore.
Can you write a letter to the doctor before the next appointment? Give him lots of examples of the changes and declines you see. Tell him how resistant your husband is, and ask him not to use trigger words with your husband like memory loss.
Can you write a letter to your husband about how much you love him and the good times you used to have? Tell him you love him and want to change your relationship to the way it used to be. Tell him YOU're getting older and failing, ad ask him to be more patient with you. If you can put him in the superior position, he might feel more generous to you.
Can you manage to fake a tear or a sob or two when he is attacking you? It might just make him mad, but it might make him feel superior and more forgiving. What actually worked best between my father and my mother was when she would fake losing her temper. That would calm him right down. In other words, try something different from what you have been doing, something that is out of character for you.
Guilty secret about me: I'm the "smart girl" and I just love it when "I'm right and you're wrong." I try really hard to keep that part of me out of my conversations with my husband. Even though I know it doesn't help one little bit, sometimes I slip up and gloat about him being wrong. I have to remember that it almost never matters "who's right". Try never to correct him unless it's safety related and urgent. Facts no longer matter.
You have a very tough situation. God bless you.
Leave the premise and go visit a friend/family member, go shopping, go for a drive, go to a movie. Just go. Yes, at first you will feel guilty and you will probably cry - but it does get better. Trust me.
yours is an exceptionally good explaination imo. sounds like you speak from experience.
I learned a few things. #1 Dont argue with dementia loved one. It doesnt work. They CANT understand or remember.
#2 it seems like they are being inconsiderate of us...and they are....but they cant help it. They are no longer the same person (fully)..they have lost thier ability to rationalize.
#3 If gram thought she was being poisoned, I told her, not to worry, I cooked the food and made sure it's clean and fine. If she thought a caretaker or someone who came into the home to help me had kidnapped her and taken her into a basement, I didnt tell her she was wrong (tried that, it only made her feel more anxious because I wasnt believing her and she really believed it)...she thought her living room was a basement (this lasted about a month and then stopped, we think it may have had to do with Alzheimer medication)...I told her that I had called the police and they were on their way..she relaxed, for got about it and was ok..
#4 if you can, privately video episodes, and show them to the doctor (when loved one isnt looking, you dont want them tot distrust you)...
We also used and tried many many medications to relieve the anxiety. seroquel helped, xanax, celexa. We once had to resort to using haldol. But that is a last resort and dont use it as the bottle says. Give a tiny piece, cut it in half and in half again...and DO NOT REPEAT unless necessary. Somtimes we cut it into a 1/16 piece. Looked like a little grain. and sometimes we used a half of one if she needed it. We only used haldol for one week...and weaned her off. Had we known what we know now. we would have never used it round the clock or for the whole week.
Many hallucinations are caused by medications that are suppose to help with memory. they didnt help with memory and had horrible side effects for gram. She stopped with the horible hallucinating a month after being taken off the memory drugs. In the mean time haldol worked. We never had to use it again. But we kept it on hand, just in case.
It's not their fault, they are arguing....they really believe what they are saying...the worst part is dealing with their anxiety....and keeping it under control with medication ...then they will argue less.
It could be that the Dr. isn't going to stand there and say to your husband, "Now Mr. Smith, I know you're not fine. Looky here, you have _________ and ________ and that leads to ________....." But I would bet that his Dr. knows what's going on. Is there an issue you're having with your husband that the Dr. hasn't addressed?
Does your husband refuse to believe that he has dementia? This could be a part of the dementia or maybe just denial. Denial is very common. Or the dementia could be preventing him from being able to understand that he has health problems. In his mind maybe he is ok.
If your hubby was diagnosed with dementia 8 years ago would you say that his dementia is moderate? Severe? What's the worst part for you?
Can you ever get out together or do anything pleasurable at all despite his health and cognitive problems?