If you’ve read some of my previous posts you are aware that I’m locked in a real-life battle with my mother’s advanced dementia and the laws in our country that seem to promote self-determination over health, safety, and common sense. These laws allow her to refuse the help and care that would keep her safe in her own home, and prevents facilities from accepting her as long as she refuses to give her consent. Unless…. It’s that unless part that can be very complicated, expensive, and difficult to achieve.
I am aware of the possibilities of Guardianship/Conservatorship. In my years of elder-care management I’ve seen the very best and the very worst of this option. It’s important for me to say that I’ve been advised by attorneys on both sides of the State line that this should be my option of very last resort (and that opinion was offered again as recently as yesterday). Every situation is different, so check with an Elder-law attorney in your area to see if this would be a good option for you or someone you know.
Just lately I’ve come in contact with people in two separate programs who are very willing to try to help me in my struggle, and to help my mother in her desperate need for care and safety. One of these programs was recently developed and funded through our 2018 State Plan on Aging. This program was not advertised, and I happened to find this person through a very long, circuitous route of referrals.
Since we are just at the very beginning of an uncharted process I don’t want to share contact details yet, but I do want to talk about a few things that can help you move ahead quickly once you find someone who can help.
But first, for everyone:
- If it hasn’t happened already, try to get your loved one to designate a Medical (or better yet a Durable) Power of Attorney, or otherwise an Advance Directive (free and available online). The latter document has two parts, A) The kind of treatment they wish to receive when they can’t speak for themselves, and B) Choosing a Healthcare Representative and an alternate person. This designation allows the chosen person to talk with healthcare providers and allows them to participate in healthcare decisions when needed.
Now, for those who are caring for someone who refuses the help they really need:
- Make sure all your help is organized and documented—keep notes. Make a chart if it helps. (Who visits regularly, who does home maintenance, who invites for holidays, who does shopping, cooking, and laundry, who helps with care?) It will be important to be able to quickly and clearly articulate what you and your family group are doing in support of the person with dementia or other debilitating illness. Not only will this help you identify where your group could be more efficient, it will also help you know when you’ve reached your maximum effectiveness. (I keep a running Log in a Word document and I send a monthly group email to all helpers.) Adult Protective Services generally asks for this information or will try to find resources for you from your family and friends. Save them the time and show them that you’ve already done it.
- Ask and answer the big questions: Is our plan sustainable? (Sustainable is a key word in social service agencies.) Can we keep doing this? If we could find a way to do more would it even help, would it change anything?
- Start building a case. Keep a log of your care-related activities, note changes in the person with dementia, keep copies of important documents and letters (especially things that make note of the diagnosis), take pictures of situations that are unsafe, call local authorities (Adult Protective Services or local law enforcement/emergency services when appropriate), whether they can immediately solve your problem or not your call will become part of the record.
- Study the illness so you can understand and anticipate the changes. Learn the correct terms.
- Communicate with decision making agencies. Keep them up to date on changes. Follow up—if they don’t get back to you, call again. It’s important to let these busy people see that you care for your family member and that you sincerely want the best for them. All of this helps them help you. (When I send safety-related pictures I try to include one of my mother enjoying something. It helps them think of her as a real person, not just another case.)
It sounds like a lot, and it is. It’s the work of an advocate.