What do I say?

When people ask me this, i know they mean well, and are trying to be considerate but I am tired of glossing over the situation, and i have started being truthful. Short, but honest answers. People need to know, and there needs to be more awareness. I also tell people who don't know me that my husband has ALZ, and Im finding that in general, folks are a little more considerate, might even let me jump the line at the post office, especially if DH is waiting for me.

By the way, this applies to family members as well.

Sending good thoughts your way,

Maureen

Hi @tackyjack I brought in-home care fairly early - just for a couple of hours every few days. It was more for the socialization than anything else. The caregivers would just hang out with Peggy, keep her company, play easy board games with her.

Memory care was a tougher call, but Peggy was frequently getting lost in the house. It was stressing her out. I also started worrying about her safety. Once she got over the shock of being in memory care, she told me that she should have moved there sooner. Memory care is a much simpler environment and there are a lot of caregivers there to help out. I never regretted placing her there.

Spunky,

This is my first post, but the similarities in our situations drew me in to respond. My DW was diagnosed with EO ALZ three years ago and likewise didn't want to tell anyone. Our two boys live nearby and we are very involved in their families lives and activities. I'm sure they suspected, so against my wife's wishes I informed them. They were as devastated as I was, but were glad to know and have been very supportive and helpful. My wife still gets upset with me (several times a day) when she asks me if the kids know and why did I have to tell them.

Your comment that really got my attention was "My husband can still drive and often takes the kids to their events". The whole driving situation is very difficult to navigate, but I think my son's would be furious with me if I didn't tell them and my wife still drove the grandkids around. Not judging, just concerned. My DW's short term memory is shot, but physically she's still excellent. Her neurologist just referred her for an occupational therapy driver's evaluation. His big concern is her ability to recognize and respond to unusual events (someone swerving into her lane, navigating abrupt lane change in construct zones, etc). Beyond that, I don't believe she could defend herself in the case of an accident. She would be unable to recall the details. She's been fighting back against not driving, but she really doesn't need to, we're both retired. She hasn't driven since October and I'm sure her driving days are over.

As far a telling people about her diagnosis, I tried to honor her wishes as long as possible. However, she started to withdraw from social activities with her friends (book club, mahjong, golf) because she couldn't follow along anymore. At that point I decided to confide in a couple of trusted friends and asked for their assistance. They have been wonderful and help her keep track of her ball and keep her score playing golf. Someone drives her to book club, but she doesn't read the book, she just has a great lunch with her friends. She didn't push back much about me telling these friends because it has allowed her to continue to participant, otherwise she'd be sitting at home.

Caregiving is a difficult situation that none of us are prepared for. But in respect to their privacy, I'm learning that they are losing their ability to make rational decisions and they need us to set up to protect them. It's very difficult, especially when they push back.

@spunkykid578 my heart goes out to you, from one spouse caregiver to another. We are 5 years in, and early Stage 7 now. I have been where you are, and will encourage you to learn "don't ask, don't tell". And "just do it". It is hard, but increasingly necessary, for us to realize that things in our marriage have changed forever - no one's fault - but there it is. And that you are now in charge. You have to take action and find work-arounds and ways to do the right things, quickly, sometimes not even discussing with your LO. I know that isn't easy.

@housefinch was 100% correct about the driving needing to stop immediately. In addition to the possible terrible impact for your family financially, there is the serious risk of injury (or worse) to other drivers and pedestrians. It is not fair to unsuspecting others, to have someone with impaired memory and judgment behind the wheel of thousands of pounds of heavy metal moving at speeds. Please.

My DH has anosognosia and lacks any awareness that he has dementia or that anything is wrong. So we could not discuss his need to pull back, except for a few times on diagnosis and then he completely forgot. So, after experiencing first hand what we learn here, that "you can't reason with someone whose reasoner is broken", I went to work on my own to do what was necessary to keep him and others safe. Disappeared the keys many times, disabled the car, and finally disappeared it.

That is the short version, it was more involved and stressful than that, but nothing like what I would have felt if he ran over a jogger or child in the crosswalk. Trouble finding words and repeating things means he also is not reliable to remember exactly what to do when, in accelerating, stopping, yielding the right of way, remembering the many sudden unconscious decisions that safe driving entails, and adjusting quickly to others' unexpected maneuvers as stated. Vision and spatial awareness can also be affected for PWDs so you really must get him off the road at all costs.

The excuses I came up with to redirect my DH! And I perfected the blank look and empathetic tone when promising I would help him look for the car once it went missing. It may feel wrong, but it is right to do what is right. Not long after, he forgot all about the car and driving.