My parents are Silent Generation and don’t talk to me

CassieW

My folks are too old to be Baby Boomers, and they will NOT talk about dementia stuff.  It’s very difficult to be trying to get diagnoses, medications, and manage symptoms when they close down.

Does anyone have any suggestions? I don’t want to make anyone anxious, I want to be able to be a better advocate for them.

Thanks

harshedbuzz

Cassie-

I'm a peak of the baby boom and my parents are of that generation. LOL, I used to wonder if "Sneaky" would have been more appropriate a tag than "Silent". 

Some thoughts.

1. It is never a good idea to reference dementia with the person who has the diagnosis. What ever you do, don't say the "BIG A" word. 

2. There's also the "little a" word- anosognosia. It's a condition where a person with dementia or mental illness is incapable of recognizing that their mind is not processing information properly. In their mind, damaged as it is, they are just fine and anyone who suggests otherwise is gaslighting them. 

3. In many forms of dementia, higher order thinking skills and executive function are impacted by the time short term memory issues are obvious to others. This leads to the cardinal rule of interaction with a PWD- never try to reason with a person who has dementia because their reasoner is broken.

4. If you break this rule (see item 3)  and succeed in coming to a consensus, it will be forgotten by the PWD because they have no short term memory.

I did live a similar dynamic and experience. My parents were married 60 years when dad was diagnosed; to the day, while hospitalized after a psychotic episode. They'd retired 20 years prior moving 4 hours away and then snow-birding which put them a couple hours away by plane. They always had a kind of symbiotic relationship where it was tough to get information; they considered this being private or being loyal to their partner. 

5. In my situation what worked was approaching the parent who did not have dementia. It took some time. Dad did not have a diagnosis and I thought he needed to be evaluated. I raised the issue in 2005 when I thought it might be depression, in 2008 when I was pretty sure cognition was slipping and pretty much every time I saw them until 2015 when the feces hit the fan and my mother agreed she needed help. 

TL;DR The spouse of a PWD may not be ready to talk about this and it may take time or a crisis to get to a point where you can insert yourself. 

6. In your shoes, I would come up with a Plan B. What would you need to do should the caregiving parent be unable to provide care and supervision because of disability or death keeping in mind that 1/3 of care givers die before those they care for. If you'd bring the person home you should prepare a space for them. If you'd have them join a memory care community, you should tour and select a couple that meet your needs as well as a couple of SNF/rehabs in case they are needed after a hospitalization. Unless your parents have assets in the millions, you should be looking at places that will accept Medicaid after a period of self-pay.

7. You may have more success with "divide and conquer". Once the caregiver has had some time to process the diagnosis, it would be prudent to talk with them about ways in which you can help. It's important to remain mindful that the experience of losing a spouse and life partner is very different from losing a parent which is the more natural order of things. 

8. You may need to attempt this discussion a couple of times. In addition to a natural reticence around discussing the impact of dad's dementia, my mom was not as acutely concerned as I was about dad's decline. She was too close to the situation to see it clearly, rather like the frog in the warm pot of water who doesn't realize he's about to be cooked. 

9. At the very least, you should enquire about legal documents and plans for their future. Do they have POAs in place? Should you, or another trusted person, become POA for the spouse who doesn't have dementia?

10. One situation for which you should be looking is the one where you have 2 parents with a cognitive shift/dementia. This is more common than people think. Oft times, the one who is at an earlier stage is not diagnosed and the pair together function better than either one would alone. 

11. And finally, you say "advocate". What does that look like to you? IME, there isn't a whole lot PWD need in terms of advocation. There's precious little to advocate for. There are medications which help some people in terms of improving quality of life but not disease progression and others which can relieve challenging behaviors. There are some programs which might offer meals or caregiving in some communities or for certain veterans. 

That said, there were a number of times when I was the advocate for my mother who did not have dementia. All of dad's medical team, even when it overlapped with mom's team, tended to put his needs/wants/comfort ahead of what was best for my mom. More than once I had to tell a doctor that I was unwilling to lose both parents to my dad's dementia. 

IME, what couples with dementia need is more hands on or logistics. Help with the household tasks formerly handled by the PWD when they can no longer manage safely- shopping, lawn mowing, cooking, transportation- and respite for the caregiver seem to be top of most lists. 

Good luck. This is hard stuff.

HB

M1

Hi Cassie and welcome. It's more common than you think and likely not just generational-read about anosognosia which is part of the disease. We all have to work around it. You likely won't be able to discuss the disease with them directly as it will just upset and frustrate them. Good luck, read lots of threads both here and caregivers forum, also solutions section of the website

Ed1937

Cassie, welcome to the forum. Sorry you are having a problem with your parents. We have a lot of good people here to help in any way they can, and it looks like you already received an excellent post by HB. I have nothing to add to that.