My Mother's Journey With Dementia

Legal Paperwork with the Dementia Patient

One of the earliest things we learned when dealing with my grandparents and their Alzheimer disease was to get the legal paperwork done as soon as possible.

I remember one grandparent in particular who was a handful when it came to the cooperation part of that aspect.

I have to say now that we are dealing with the dementia with my mother she has been very cooperative.  Can I say so far anyway?

Dementia and its progression can often be unpredictable, and we couldn't fall for my mother's excuse "Later!"

Pre-planning can avoid costly legal pitfalls when not prepared.  You will save the caregiver and the family trauma and grief later.

Talk to the person soon after a diagnosis of dementia while she is still able to think clearly and make decisions about how legal, financial and medical arrangements will be handled in the future.  To me this also has an aspect of self respect, because they are competent enough to help with their wishes. (Most of the time at the Beginning anyway)

You don't want to wait to long, and I realize some people claim they have time like my mother likes to say.  I remember reminding my mother of a car accident I had, and brought to her attention I couldn't 'plan' for it beforehand.  She could be in a car wreck, or her dementia progresses, thyroid issues or a host of other things could happen prior to our planning ahead.



I think for some it is a personal issue of 'control' in a way, and I do understand that.  In my mother's case I mentioned how could we help her if she was unconscious from accident or something similar. I reminded her our hands would be tied.

If the paperwork isn't in place before that she would have people that don't know her having control over what happens to her.  "WE" (my brother and I) would be helpless to make sure HER wishes were taken care of.  I left the 'dementia' out of the equation.  She seemed to come around at that point.

We all know that this can be very touchy subject, but the wills, trusts, power of attorney, etc. truly need to be taken care of right away.  One reason is simple as I mentioned prior: You want to be sure their wishes are taken care of.  Additionally is the fact if you wait to long to do this?  Its a huge legal battle due to competency.

It can be a downright nightmare if you wait to long.   Every state, country, and sometimes even towns and county's can be different as to what they require.

Due the fact that Dementia and Alzheimer patients can be confused and frustrated easy I would recommend doing the research on your own before approaching this.  Educate yourself FIRST, and then bring your family member into the loop later.  I have found if you are comfortable, confident, and reflect 'its not big deal' attitude?  They are less intimidated, scared, and all the rest of feelings that come along.

Sadly, this is not like the past in which you enter unknown waters together.  Get yourself a book locally to get you started, but keep in mind AGAIN every area in the world may have different requirements.  I sure enough of them are the same that will help you get a head start.

This needs to be a family affair so to speak!  I realize some need to keep in mind family dynamics, so I am going to just generalize some items that come to mind.

Determining who will be responsible for making decisions if the person with dementia is unable to do so for herself is equally important. (Keep my car accident example in mind - the person being unconscious at the hospital approach if bring up dementia is a sore subject.  This as you know applies to many circumstances.)

Find out if she already has completed Power of Attorney documents. If so, who's been named.  Where are they, etc.

If no one has been designated, then you need to know who is the legal substitute decision maker for personal care. If you have siblings or other relatives that will be involved in the care of the person with dementia, call a family meeting to discuss how decisions will be made.

Remember! It's important to support and respect the wishes of the person with the disease.  At times I have seen families make this process turn into a cat fight, and we all need to remember its not about US!

While advance care planning, including written documents, is voluntary, organizing important legal documents and putting them in a safe place as soon as possible after the diagnosis can allow the person with dementia to be involved in making these decisions. And it helps the caregiver and family members be aware of the person's wishes. I think you realize by now its always wise to seek legal professional advice.

We have attended support groups in the past, and you can't imagine the legal, medical, etc nightmares ahead if all the T's aren't crossed in the manner the areas your loved one lives in sees fit.

I found when approaching my mother about this issues I kept things general, and didn't bring the dementia into the discussion.  I approached as a 'common sense' plan to make sure her wishes are always taken care of the way she wishes them.  You can't do that if the legal junk isn't in place. KEEP it simple, and not to many details though - you can lose them quickly!