New here... starting to feel lost...

the evening rants are known as Sundowners that happens to those with dementia. My husband and I are in our 60’s and making us have a mutual meeting with our psychiatrist cemented that. He put him on some medication and it has pretty much stopped. It does throw me off guard when every now and then it rears its head then we adjust meds some and we back holding steady for a little while.

I have learned so much from this group. I usually don’t talk too much but boy do I get answers and ideas to ‘survive’. I wish you the best !!!!!!!

@CydS

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

You've gotten some excellent advice so far. A couple of things struck me-

Driving. This is a dicey decision. PWD are OK to drive until they aren't. And you might not recognize it's time to stop until someone's been hurt or killed. Dementia impacts reaction time and visual/spatial processing fairly early on in the disease progression. It might be time to consider a ride sharing service like Uber, Lyft Silver or GoGoGrandparent.

Have you actually spoken with your agent regarding his coverage with a dementia diagnosis in his medical record? When dad was initially diagnosed, our agent informed me that his policy would not cover him in an accident with a medical history of dementia. The other piece is that should your DH have an accident and find himself in a civil lawsuit, considerable time will pass between the accident and his deposition and court date. With a progressive disease like dementia, the man on the stand will not be the same man who was driving.

My mom (no dementia) was sued after an accident. The notification of the suit came almost a year after and the deposition a few months later. The trial was rescheduled several times and was finally scheduled 2 1/2 years after the accident. She seemed so much older and frailer than she had been at the time of the accident.

There tend to be 2 kinds of support groups. The are those for caregivers which are similar to this one— participants seek solutions to issues they're having, vent and seek support of others who get it. Before dad died, mom and I attended an IRL support group which was really well moderated and useful for local resources like day programs, dentists who "got" PWD and which MCFs were best. The other kind of group is most often called something like a Memory Cafe. These might be found as part of a hospital community programming for elders or at a CCRC IME. Sometimes the meeting is split with a short breakout that allows caregivers to vent, etc, but not always.

The behavior you are describing is very common in PWD. My dad was similar in the middle-stages of his disease. I think his belief that mom was unhappy, leaving him or cheating with someone when she ran errands came from 2 places. The first is that he was feeling anxious and vulnerable. The second was that mom's general unhappiness around the changes in dad was palpable. While this was understandable, PWD maintain their emotional intelligence well into the later stages of the disease and are able to parse not only changes in their spouse's mood but also subtle changes in the dynamic of the relationship from equal partners towards caregiver & patient. A combination of mom putting on her best game-face of sunny cheerfulness and medication for both helped a lot. Instead of a couple's therapist, I'd consider taking DH to a geriatric psychiatrist for medication to relieve the anxiety that's likely at the root of his behavior. I thought dad would bristle at "a shrink" as he called them, but he enjoyed the appointments and thought the world of the doctor.

Talk therapy for PWD isn't generally suggested. By the time a person has the diagnosis, they are unable to change with therapy. PWD have losses around empathy, learning new ways of thinking and recognizing when to apply those new tools.

HB

I'm new here, too. It's been wonderful. A place to vent, to cry, to ask questions, to not feel judged, to try not to judge yourself, which is really hard. I'm sorry you had to join us, but, I'm glad you're here.

A few suggestions: Have your husband’s neurologist have the driving discussion with your husband. Sometimes it helps if the doctor tells them that they shouldn’t be driving. Call your car insurance company and ask if an accident will be covered with his diagnosis. His reasoning is broken. He can’t understand the risk involved with driving.

Welcome. Obviously dementia is progressive. If he is tested only once a year then there is the potential that he could be driving for months before his defects are detected in a test. Being that driving while impaired by dementia could be a matter of life and death, in my opinion a pwd should stop driving before there is a problem. People with dementia have trouble understanding reason. Life is full of complex decisions requiring consideration of many factors. A person with dementia is going to struggle making informed decisions that consider other points of view. As others have said a lack of empathy is also common. I would think it will be very hard to find a support group for your husband. I have attached a couple of general resources that you may find interesting and helpful.

it was lovely to read your response, music is so important in our life, in everything I hear a song. If I can’t remember the name of a tune I type in a few words and bingo up pops the song 🎵 that is in my head. We dance, hum, sing, enjoy the moment. It also helps to change the flow of conversation from argument to ‘she’ll be right’ and ‘who cares anyway’. Being old sailors (me 75 DH 77) we go to Sailability every week, I skipper and take my DH and others sailing in one of the 16’ dinghies. It provides physical activity plus social activities with a wonderfully kind and understanding group. My approach is that I still want to have a close relationship with my DH together we have had such an adventurous life loosing it breaks my heart.

Hello, I, too am fairly new but there is so much good support and advice from fellow caregivers. My DH and I attend a bi-monthly support group that we meet for about 10 minutes together as a group and then the caregivers meet in one room and the persons affected meet in another for an hour and a bit. It has been wonderful and a great source of support. I got the information for this group by calling the 1-800 helpline number found on the Alzheimer's Association webpage. Our facilitators are both volunteers with the Alzheimer's Association and they have brought in guest speakers to address various aspects of dementia but the best part is just being with others who are experiencing many of the same things I am. Best of luck and ask anything at any time.