Thoughts on aging, assisted living, and death

When people age, they often move to assisted living facilities, either by their own choice or in response to outside pressure. Often, these facilities present themselves as being basically just like living in your own apartment, except that they clean for you, provide meals, and offer enjoyable activities.

And, when people first move in, this is generally true. People who can do the activities of daily living without help retain control over their lives, can come and go as they please, and live very similarly to people who live in their own places. But as residents age, they loose physical and cognitive abilities, and often lose control over their lives. What once looked like an apartment can look like an institution really quickly when you start to need more help.

On TV, we never see aging or death depicted very accurately. People who die on TV don’t decline over time, they’re just there until they’re not, and sometimes they look perfectly healthy in a hospital bed before they aren’t there. And sometimes, not being there isn’t dying, sometimes it’s being put into a home.
Real death is not like that. Real death is not usually sudden. People who die of old age normally become disabled first. On TV, when you become disabled enough for it to matter, you disappear. In real life, you are still there, you are still a person, and you still care about your life. 
So, if you’re old enough to be considering moving into an assisted living facility, you’re old enough that you need to plan for what will happen as you become more disabled. Don’t assume that the people who run your residence will know what to do; you will be better off if you make the decisions rather than outsourcing them to other people.
On valuing your life:
If you are old, people might pressure you to refuse treatment for medical conditions you have so that you will die sooner. They might euphemistically call this dying naturally or not prolonging the dying process. But there’s nothing unnatural about using a feeding tube, treating an infection, or any number of other things people might try to talk you out of. Do not get all of your medical information from people who see the world this way. Medical decisions are yours to make, and make sure that the people advising you on your care believe that your life is worth living.
Pay attention to the disability community as well as the aging community. Some people feel like they would rather die than come to be impaired in a way they’re dreading. Hearing the voices of people who live with those impairments and value their lives will make it much, much easier for you to get past that fear.  Everything you face physically as you age is something that some disabled folks live with long-term. They know a lot about how to be disabled and still be free, self-respecting, and live. Disabled adults who live free lives and avoid nursing homes have had to gain a lot of skills that you are going to need. Not all of what they know has reached the aging community. Learn from both. 
In particular: There’s a lot of fear and misinformation about feeding tubes. When people ask you to fill out a form indicating which treatment you do and don’t want, feeding tubes are one of the first things they ask about. People often see eating with a feeding tube as something like being a zombie, being undead, and living an unacceptable life. But feeding tubes are really just a way to eat and stay alive if you can’t use your mouth to eat. Similarly, breathing support is just a way to breathe. It doesn’t make you a zombie. It lets you stay alive and gives you more time to live and love and care about things.
Questions to consider:
  • When I am no longer able to walk as far as I want to go, how will I get a good wheelchair and learn how to use it?
  • If I lose the ability to speak, how will I communicate? 
  • If I develop dementia, how will I communicate as I decline cognitively? What do I need to do now to make sure that if I develop dementia, I will still be treated like a person?
  • If I need assistance in the activities of daily living, will I still be able to decide how and when to do them, or will those decisions be governed by staff convenience?
  • If others decide that I am a fall risk, will I still be able to make my own decisions about when and how to get out of bed, and whether to use a bed alarm?
Just, generally speaking - your life does not end when you become disabled. It just changes. When you become disabled, your life will still be worth living, and you will still care what happens to you. Don’t let anyone talk you into devaluing it, and plan to keep your freedom.





I think we need to establish the difference between actual real self-diagnosis, which a lot of people do with a LOT of conditions before they bother going to the doctor for ANYTHING from athlete’s foot to depression and autism, and using hyperbole in a harmful manner to express something about yourself (OMG I am SO ADD today) or use it as an insult to hurt others (god, I hate her, she’s so bipolar). The latter two hurt actual people with actual conditions.

The first one, we ALL do. Some people don’t have access to medical care and make due with what they have available. Some people don’t want to spend the money/time going to the doctor if it is something they can rule out on their own. Ok, it’s not an allergy, I changed my laundry soap, I changed to all cotton socks, I tried over the counter athlete’s foot cream, obviously it is time to go to the doctor’s. Then you can tell them all of the things you have tried, instead of them sending you home with a list of things to try that you could have saved the copay on. Even with mental illnesses or differences—we wonder what is wrong with us, and do some research, or talk to people who have similar experiences to us, and a light comes on.

Honestly, doctors were medicating me for ADD for YEARS because of poor executive function. But what it was was anxiety and autism, so the ADD meds were making it worse. If I would have BOTHERED to read up on my actual symptoms, I might have saved myself 15 years of doing things that didn’t work. I was diagnosed purely on accident when I went to a walk-in clinic during a meltdown.

There is a HUGE difference between seeking an actual diagnosis that suits symptoms before you go to the doctor, or because you can’t go to the doctor and a) harmfully using hyperbole to illustrate something about yourself (sadness level, how scatterbrained you are today, etc) or b) using a type of illness/condition as an insult.

I think this discussion is getting derailed on the actual useful types of self-diagnoses, and appropriate types of self-diagnosis (or even just health exploration… COULD it be this?) and harmfully throwing around medical terms.You know?


I self-diagnosed for years as bipolar. This has been confirmed as correct by doctors at this point. But there are things I could have done so much better. I did not do nearly enough research. I could have understood so much more about myself if I had even looked at the wiki page a little harder. I did not understand the difference between hypomania and mania, nor did I fully understand the difference between BP1 and BP2. I also could have looked into ways of managing bipolar without a therapist or drugs. Doing as much research as possible is super helpful when self-diagnosising, and can be a good way to find support. Like I have a message board I go to from time-to-time when I have a question now. That would have been super helpful like 3 years ago.


That’s also really, really important with a professional diagnosis, too.

Professional medical support can be important, but it doesn’t replace peer support or your own knowledge.