Telling children

a similar post was made today asking when to get the kids involved. The answers to that post apply to you too.

We told ours almost immediately. I think it is a good idea.

I told my step daughter right away and asked if she wanted periodic updates. She said yes. I sent them monthly at first then more often as he progressed. She lives out of state. I sent her the book “The 36 Hour Day” to read and told her to ask me any questions she had. It helped our communication.

@turville

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

Another poster asked this very question just 2 days ago. Here's my lived experience:

As an adult child, I would encourage you to share this information, like, yesterday.

They need to be looped in for 2 reasons.

Firstly, if you got hit by a bus tomorrow, your children become the Plan B for their dad's care. If they don't know about his diagnosis and care plan, they will struggle at a time when they will be mourning their mom. When a PWD loses the spouse whose daily scaffolding of skills allows them to function as well as they do it removed, they will have a significant drop in abilities making this even harder on the kids.

Secondly, a DH with dementia does not have the capacity to continue to act as your advocate or agent relative to a POA. Someone else needs to be named and that person needs to understand the situation.

HB

ETA: in the first scenario it was my childless auntie whose DH chose not to share the diagnosis assuming she would pass first given her health. He was wrong. A deathbed plea to "look after your sister, really, really look" was made without details or the legal pieces in place to take over. Auntie would showtime during visits but it wasn't until her sister found her sitting in a cold, dark house wondering when the cable would come back that we understood the gravity of the situation.

In the second situation, it was my parents who between dad's anosognosia and mom's denial had not even gotten as far as a diagnosis. They were at their place in FL for the winter when mom went into autoimmune liver failure. Dad was unable to recognize how ill she was (the woman was the color of a school bus) or get her help. I'd been calling daily. Initially mom would report being tired or under the weather, then dad would answer and complain she was at Publix or the pool with friends. Once he didn't for 2 days and I called local police for a well-check and he fed them the same nonsense. A neighbor saw them out when dad dragged her out to get some food and took mom to the ED over his objections. I only got a call from the hospital a few days later because the hospitalist had taken the time to track down mom's other emergency contact. When I arrived at their house after spending the day with mom I found dad wearing only a bath towel hosting neighborhood happy hour.

HB

I agree with everyone else here. Tell them right away.

It helps to know you have their support as time goes on and as others have said, they can spend more time with him.

I too share a periodic update email with them to keep them up to date.

Take good care and do come back here often. This site has been such a support for me.

Welcome @Barry J

It is good you’ve told your kids about your pending diagnosis. I am guessing they are adult children; are any living at home with you? I am not in the same situation as you, but many of the same topics we suggest to caregivers will certainly apply to you who is ‘living with dementia’:

One of the first things is to make sure your affairs are in order. I recommend you enlist one of your children, sibling, or very trusted friend or relative to be your durable power of attorney. Seek out an Elder Care attorney and get this DPOA document, will/trust, HIPPA, healthcare surrogate, etc. taken care of immediately. Make sure your wishes are known - would you agree to placement in Memory Care, Assisted Living, or Nursing Home should your medical needs and safety grow beyond what can be provided to you in your home; are you okay with hospice when the time comes; who will pay bills and manage finances for you, etc?

I imagine you are doing lots of research on the disease while you wait on the PET scan. Is this for possible infusions? There is a separate discussion board for “People Living with Dementia” where others talk about their own experiences that you might also find helpful. The Book ‘The 36-Hour Day’ is a good one for caregivers. You might recommend this for one (or more) of your kids. There are also some good healthcare professionals who have their own websites and Youtube channels and they offer wonderful advice and tools in ‘plain language’ that I have found extremely helpful and timely: Tam Cummings, Teepa Snow, Natalie Edmonds, and Camille Sinclaire.

It took a while for our son to come around to his Dad’s diagnosis. Denial is a powerful protective emotion. I pray your kids will come around and be a strong support for you as you navigate this journey.

Do let us know how you are doing. We care