Advice for DH re: positivity

iowagirl1961

Hopefully without going into too much detail, we are struggling with my DH's anger and frustrations more and more. We are 4 years into this journey and he is just starting to exhibit some early Stage 5 characteristics. (he is 71 years old so on the young side) He is still independent in many ways, can even drive locally to run errands and work out and we are still traveling and active. We spend time with our family and grandchildren. However, it seems that every time I answer a question, he doesn't like the answer and becomes angry with me. He is argumentative about so many things, trivial and otherwise. I realize I can't understand how scary and frustrating this disease is for him, and I always acknowledge that to him, but I also know we have a lot of good things still in our lives. Too many days, the negativity takes over. He has been taking sertraline for over a year and is also on donepezil and newly on memantine. We will be talking to our psychiatrist about the negativity at next month's appt. but in the meantime, does anyone have suggestions about maintaining a positive attitude? Books, etc? I think I'm doing a good job being a cheerleader, but it's not going over so well these days!

Cosmic

Sorry for what's happening at this phase. I call them phases vs stages. Over time the anger part will cease but it will take time. I managed this phase by following advice on this forum. Just walk away for a few minutes, do NOT partake in an argument or anger. You might be seething inside at words being spoken but you have to learn to let it go, it's hard believe me. Take three deep breaths and let out slowly while you are by yourself. Go back into the room and act like nothing happened. Chances are he will not remember. Touch, kiss, a small rub on the back, anything to make physical contact to let him know you are here beside him regardless. He is probably more frustrated with the situation than angry but has to express it somehow. Take advantage of all those good things that you are still able to enjoy. Keep him active if you can, trips are good even if you pack a few sandwiches and just sit at a park table. Walk through the grocery store together and let him pick out things that you suggest. Sadly I'm at the phase where my wife doesn't know what the difference between real food and pet food. Have to show her how to eat a sandwich and use a fork.

Bless you for having patience.

ButterflyWings

Iowagirl, I hope you can apply Cosmic's suggestions. It is the best approach, while there is time. Whatever time you have, and we never know how fast progression will happen. So, I took the advice here, to do as much living with my DH post diagnosis, as we could.

My thoughts on your title are a bit different, since I will urge you not to try to change your DH's mind, but your own. That's what we have to do in life with anyone right? We can only truly control ourselves (sometimes!) and not others. But when brain disease enters the equation, their thinker and reasoner is just "off". And they can't be expected to respond as we want them to.

My DH has anosognosia, so he has no awareness that he is impaired. Hasn't had a clue since very soon after diagnosis really. But if he WAS aware, and I tried to get him to be positive about such a horrible diagnosis...I just don't think it would be reasonable on my part. Nothing for him to be positive about, really. All our plans, dreams, and hopes up in smoke. His ability to control any part of his life, body, thoughts and relationships...surely gone. So, I try for compassion, patience, and just going with the flow. It has helped me not to beat my head against a brick wall for years.

It has also helped, for me to take more of an "out of body" approach with this mess we are in, when I can. On the worst days, I learned in this forum, to act like I am a paid caregiver, hired to do this job for another person who can't help themself and deserves my assistance to keep the little bit of dignity and (safe) independent activity that they can while they can. Does that make sense? And I do mean acting. I have to fool myself, to remember this is not personal, it is not really my DH but just another precious human being doing or saying something they would never do or say, if not for this disease that they can't control. Here is one of many articles that I rely on, daily, still. Good luck to you as you learn to navigate these late-mid stage changes. It also might be time to consider a med modification. My DH takes Sertraline and also Seroquel/Quetiapine which was a game changer for us. Seroquel might help your DH. Keep posting.

Compassionate Care Strategies Using the 7 ‘A’s of Dementia - VHA Home HealthCare

Iris L.

Iowagirl, please read a lot of threads about driving. He does not sound like he is alert or rational enough to be behind the wheel of a vehicle. A question often asked, "would you let one of your grandchildren ride with him driving?"

Iris

SusanB-dil

Hi iowagirl - I agree with the other posts, and especially that Iris has brought up the driving. If he has been diagnosed, insurance may not cover anything that may happen. And with more agitation, I would really, seriously reconsider his driving. Very good point about the grandkids being with him. What if something were to happen... to him, the grandkids, or another innocent party?

Also do make sure all paperwork is in order, such as DPOA.

Perhaps you could get a message to his doc about the increased agitation prior to the appointment to maybe get something to take the edge off? Because negativity is one thing, but the agitation may be able to get a little more subdued.

storycrafter

With such behavior issues increasing - negativity, anger/frustration - it can be very hard for the caregiver/spouse over time. You know your situation best, but in my experience I'd do as Susan B suggests above and not wait for the appointment. Sometimes a phone message/request to the doctor can be helpful right away.

I have some thoughts to share, but I don't know which will be helpful. So I'll throw out a few of them and maybe some of it will help in some way.

My dh has similar difficulties with anger and frustration in general. Manic-depressive/bi-polar mood disorder is part of his dementia. His meds, which include an antidepressant and Seraquel (300 mg), help a lot. I've also learned to not engage much with him, my greatest sadness. When I do speak with him it's always in a calm voice and manner because he is highly sensitive to my body language and quickly loses his cool if I lose mine, even if there's only a hint of tension in my voice. (He is still highly functioning and sometimes can handle it on a good day when I clearly let him know ahead that I'm not upset with him and he doesn't need to fix anything, but I need to vent a little about something else.)

I notice my own self care becomes more crucial as his illness continues. Sometimes it's almost as if my mere presence is a trigger for his discontent. That negativity takes a toll over time. Perhaps in those moments it reminds him of how much he's lost (he has some awareness of how much he's declined). I cannot turn to him and work things through together as we did in the past. I have to let go of attempting to communicate with him and find other outlets for my own sanity. Not always easy. Often I just keep to myself, or write, or call someone, or go for a walk, watch TV, play the piano, come to this site and read.

Depending on my sense of where he is mentally-emotionally, sometimes a simple easy gesture calms him right down. If his upset hasn't progressed too far, I softly lay my hand on his arm or shoulder and say a kind word in an easy, reassuring tone, I see him visibly relax and it's amazing how it instantly turns around his agitation. The Seraquel has really given him/us back a big measure of quality of life, as that is the med that helps him regulate himself the most. (Everyone is different in how their body responds to the meds.)

I didn't mean to go on so long and hope this hasn't overwhelmed you with too much info. I wish you all the support and help you need. Best wishes....

iowagirl1961

All your replies are so appreciated- it really helps just to know I’m not alone!

I make sure I ride with him at least once a week to keep track of his driving skills and there has been no deterioration there. And I guess the good news is that he is really only argumentative with me- just occasionally with my mother and brother, but really just me. I will look into Seraquel- sounds like that might be a helpful medication.

You have all given me good suggestions- again I appreciate the feedback!

ButterflyWings

Iowagirl, you are definitely not alone! I agree 100% with many other members that driving at a certain point is not advised any more. In a different thread, I mentioned the only way I would recommend ever that a PWD drive is with someone in the car, another licensed driver monitoring at all times. Not once a week. Even then, if something happens you are not always going to be able to intervene. But it is like the requirement when a teen has their drivers' permit. No solo driving. Sorry :(. Especially not by stage 5.

It is best to stop the driving and or at least have a professional driving assessment if you really don't feel comfortable helping him exit this role. It is hard for us to see the things that experienced evaluators can determine. I can see what a good advocate you are for your DH. This is a danger zone though and can cost you both everything, as well as harm others. It just takes one wrong move on a day that you are not riding with him, and disaster.

If he can't agree, and many cannot (my DH was one), then don't ask, don't tell. But do what is necessary to protect him and others before an accident happens. Lose the keys and the car, is my strong advice. I acted like I had no idea what happened, and even helped him look for keys, called the mechanic repeatedly to find out why the repairs were taking so long, etc., etc. Then, disappeared his car for good. He never knew I was involved. You can do what is needed, and this is one area that is urgent I'm sorry to say.

tigersmom

Iowagirl, three words in your post really jumped out at me -- "newly on memantine." My DH was diagnosed just a little over two years ago. He was started on donepezil immediately without incident, and three months later on memantine. His diagnosis was mild dementia (stage 4) at the time. In the month it took to go from low dose to full dose on that drug, my gentle, funny, sociable and mild-mannered husband turned into an ogre who screamed at customer service agents on the telephone. He was quick to anger about everything, and it was truly atypical for him. I did some research and learned that this was not an uncommon reaction to this drug. Since it is usually used at a later stage than he was at, I wrote his doctor an email and explained why I was discontinuing it. Turns out his doctor (a dementia specialist at a major metropolitan medical center) had no problem with this. He said his threshold for discontinuing it was pretty low, and the agitation my husband was displaying met it easily. So we stopped it. In a week to ten days, my husband was much more like himself. Two years in, we are dealing with increased anxiety that sometimes causes similar anger. But I still feel that taking him off that drug was the right call. I would urge you to discuss this with your husband's doctor. Maybe your experience will be different -- YMMV, as they say here -- but it is definitely worth exploring. I wish you both good luck.

SDianeL

https://alzconnected.org/discussion/comment/178291#Comment_178291

thanks for that info. My husband is on Memantine and they added Resperidone low dose at night and his agitation and anger is all day every day. Going to talk to them to get him off the Memantine. I don't really see that it's helping him focus anyway.

SDianeL

https://alzconnected.org/discussion/comment/178185#Comment_178185

my DH had the 3 hour test for memory loss and the Neuro Psychologist said absolutely no driving. The only thing I noticed about my DH driving was that he was driving slowly which was unusual for him. She said he had visuospatial difficulties telling speed, distance & time. She said that once his medical records showed the diagnosis if he were in an accident, even if it wasn't his fault, we could be sued and lose everything. I explained that to my DH and said the doctor said no more driving and he reluctantly agreed to give me the keys. That was a year ago and he hasn't driven since. My DH is fully in phase 5. He's having problems with language not being able to find words and gets angry with me if I can't read his mind. My husband is just recently become very angry & agitated. I've learned not to let him hear me talking on the phone and don't really talk to family members when he can hear. He tells them things & when I try to correct him he gets very angry. So I avoid it. He says he doesn't want me telling him what to do. I only do so if he might get hurt then brace for the anger. I'm going to ask the Neuro Psychiatrist to tweak his medications to calm him more. I know how you feel.

upstateAnn

I am also sorry about the anger. My husband wa just put on M so I will observe him carefully.

Please. Stop the driving. My Dad hit three cars no e cause we waited too long. The perception issue is real. M6 husband stopped driving because of it. Good luck.