Autism Emergencies

The importance of being prepared.

I can’t say this is about autism specifically, but being autistic and elderly has made interactions with others harder for me than it might be for some people.

In mid March 2020 my husband had a health emergency which took us to the hospital Emergency Room.

In our state of the USA, Covid 19 precautions had just been enacted.

We were screened for that from an isolated hallway, as well as having to give a summary of what my husband’s problems were. We provided proof of insurance and established that I was his spouse, his representative, and his power of attorney for health and everything else.

I was allowed to wait with my husband while he was seen and tested by many different medical people, until he was finally admitted for emergency life saving surgery.
I was allowed to stay while the operation took place and after, I saw him in recovery, and followed him to his room and saw him comfortable. I saw him again early the following morning. At that point rules had changed for Covid Isolation in Hospitals. I got a call saying I could not return to the hospital to be with him.
I was not allowed to see my husband again until he recovered enough for me to pick him up and bring him home. ( I stayed outside of the hospital, in my vehicle, he was brought to my car in a wheelchair).
We were lucky because he came home alive and continues to be well.

Things like this can happen to anybody and at any time!
Some time ago, we had made each other Power of Attorney and Health Care Power of attorney, filled out a living will making each other designated decision maker/ representative if health care decisions were needed and the individual as a patient could not respond for any reason.
We made our wills at the same time.

Today I see we made good decisions to have these issues settled while we were in decent health, decent mental condition, and not in crisis.
We could discuss everything regarding our health issues, willingness to accept life support, choices surrounding “do not resuscitate” orders, etc. We could decide who we wanted to include in our will, how we wanted our “worldly goods” distributed, make special mention of the family special items and who they should go to, etc.

If you are alone and do not have family or spouse or others to speak for you, it is most important that you have these papers showing intent and giving the persons you trust the power to help you through health struggles if you ever need it. Alternatives would be next of kin, no matter how far removed, or to have court appointed guardians or your individual health care providers making decisions regarding your situation on their own. Didn’t want to spend the next 10 years on life support in a coma? Without directives and representatives, you might not get your way.

If you want to assure your best interests, it is important for you to make those choices and decisions for yourself or have available somebody who you trust , and who knows what you want, to help you.

When I was my mother’s caretaker/ representative and we had to travel, I carried copies of all the papers we needed, as listed above, plus her medicare/medicaid/insurance papers and copies of her social security card, a list of her medicines, her meds for the day, a change of clean clothing and other needs all in a backpack that I could put over her wheelchair handles.
When I had to meet the ambulance at the hospital to have her admitted for frequent health crises, I had everything I needed to assure she got the help she needed and was her spokesperson and caretaker while she was in hospital ( Parkinsons’ dementia, autism, etc made it necessary for somebody to be attendant with her at all times.

The point of these illustrations is that we don’t know what the future might bring, but we can make any crisis we experience easier to deal with by preparing ahead. Please consider how you want to be helped, who you want to help you, and what you will and will not want “done to you” in any health crisis. You will have peace of mind and you and your Representative/Power of Attorney will not have to wonder if they did the right thing. You are more likely to get the care you need if you speak up about things that are important to you while you are not in the middle of a crisis.

Just another set of tools you can use.

4 thoughts on “Autism Emergencies

  1. Oh man, that sounds extremely scary! You have indeed got lucky there it sounds like, and I’m glad that he made it through! πŸ’™

    “You are more likely to get the care you need if you speak up about things that are important to you while you are not in the middle of a crisis”

    This is very pertinent for me. I’m currently trying to get housed independently as I’m sharing a house with 4 others and it’s causing me great stress, as they’re all messy and inconsiderate. I have a mental health team and others on my side, and I just wrote an email to the doctor asking for a supporting letter. I had reached crisis point one day 2 weeks ago, and I’m trying to prevent it from happening again.

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  2. I’m glad you planned ahead, but what do you do if your spouse refuses to accept we all must die one day and is so afraid of that he won’t make a will or discuss things like funeral pre-need plans? That’s where I am. I’m glad your husband came home alive and hope he has a full recovery.

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    1. so frustrating! I had struggles with my spouse over this too, for years. In our situation I think it was at least partly being too scared of the possibilities to see how addressing some of the scariest parts might help! Patience and persistence with assurance of how much I cared, and how much it meant to our security in the future finally won out. I told him I was going to go ahead and get my POA and will done on my own. I told him how scary it was to think of being in situations like long term care where nobody who cared about me was making the decisions. I offered to do all the contacting of lawyers, setting up appointments, if he wanted to do his at the same time. etc etc… and eventually he decided to go ahead. I hope you find a way to reach your mate and gain peace of mind for both of you!

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  3. I hope you are able to find something that works! You are your own best advocate, I learned to ask for something nicely and then keep asking… patience and persistence works wonders. Autistic perseveration for the win! cheering you on Robin!

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