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Best things to do now in case one day it is me?
Posted: Tuesday, December 4, 2018 9:58 AM
Joined: 8/1/2017
Posts: 143

I've been here over a year when I started looking for assistance coming to terms with my mom's dementia. The advice and wisdom shared by the lovely people here is invaluable and thank you all so much. 

I can't help but think of some day 20-30 years down the road when I could indeed be the one in my mom's situation. Honestly, I would probably think it to be sliver lining if the end for me was quick and by some other means. But none of us can know.  

Is there anything we can do now to make it easier for ourselves and the people around us in the event that day comes? If we wait until we are elderly, I think there would be a small window between the time we know we have an issue and can still do something about it, and the time we are unable. 

Any thoughts or plans any one is making?  (Apologies if this is such a downer topic.) 



D in law
Posted: Tuesday, December 4, 2018 10:10 AM
Joined: 4/24/2017
Posts: 500

We just recently did a will, advance directive, and assigned POAs to our children.

I have verbally and explicitly stated to my 2 kids, husband, and siblings that the minute I can no longer take care of myself it's time to make the arrangements to find a place for me.  I joke a bit and tell them to just drop me off and it's up to them whether or not they come back because I am not going to know.  NO WAY do I want anyone caring for me in this matter.  NEVER, not happening. I hope I die of something else, but we just don't know.  I hope I know enough of this disease now that I will see my own warning signs, get diagnosed, and not have my family go through it on a 24/7 basis.

Posted: Tuesday, December 4, 2018 10:22 AM
Joined: 10/25/2018
Posts: 214

I have told everyone I know as well. My first intention, assuming I don't lose my mind all at once, is to take care of the problem myself. I'd rather die on my own terms. But if I last long enough that I become a burden, I want to be placed in a home.

I'm redoing my will soon, and I will make sure it is clear there as well. I'm thinking a video wouldn't be a bad backup for that.

Eric L
Posted: Tuesday, December 4, 2018 10:45 AM
Joined: 12/5/2014
Posts: 957

Obviously, I think dotting the i's and crossing all of the t's in regards to getting your legal affairs in order is probably the most important thing. I'd also make sure that any and all of your wishes for the final years of your life are written in a "binding" legal document (a trust or living will I would assume, but I'm not a lawyer).

Aside from legal affairs, I would say that just from observing my MIL, she was always so darned worried about "saving for a rainy day". Of course, she had good reason to because they scraped by in the early years of their marriage. However, my in-laws were very comfortable at a certain point in their life and she front loaded her worry so much that she never actually enjoyed the labors of her work. I'm not saying that you should spend money you don't have, but maybe if you do have it, enjoy it for a bit. My in-laws retirement looks like this - FIL was diagnosed with pancreatic cancer and was forced to retire because of it. He spent his very short retirement being sick for a couple of years and ultimately passed. My MIL retired and a few months later, he was diagnosed. She was diagnosed within a couple of years after her retirement. Even when she was "well" (she was already showing signs when she retired), she was worried about her husband and his diagnosis. It makes me sad because she never really enjoyed any sort of retirement.
Posted: Tuesday, December 4, 2018 11:03 AM
Joined: 6/3/2013
Posts: 665

Get long-term care insurance.
His Daughter
Posted: Tuesday, December 4, 2018 1:11 PM
Joined: 6/25/2014
Posts: 2277

Having your legal affairs in order is a MUST.  And I honestly think that writing a specific medical directive for dementing illness, whether or not it's legally recognized in today's society, would be a good idea.  Some people are adamantly opposed to having family providing care, which could be written in a directive.  Others would prefer to "age in place" if at all possible.  I even asked my attorney to do a document where I specifically asked for "aid in dying" at a certain point in the illness. (While it's not allowed NOW, who knows how this topic may change in 25 years?)  

One thing that completely changed with caring for my dad, was how I had originally written my will.  I had done something very similar to my parents, with an equal three way split between my kids.  OK, THAT'S OVER WITH!     I have informed all of my children, that the roles on a will are very time consuming and draining.  And I refuse to hand these roles to any one child, without providing something extra in my will to that person who steps up to do the work.  So there are now specified amounts for my DPOA, MPOA, Personal Representative, and potential caregiver. It's about being fair.  And it's not "fair" to ask one person to handle your affairs, without providing some financial compensation for their time and energy.   

And trust me, if you don't specify these things in your will, these people won't get anything for all their time and work on your behalf.  

Mimi S.
Posted: Tuesday, December 4, 2018 7:19 PM
Joined: 11/29/2011
Posts: 7037

Hi Ginger,
I think anyone with dementia in the family worries about such a possibility.  Lots of good advice has been given about having your affairs in order. I  urge folks to use the services of an
Certified Elder Law Attorney.


i don't believe it is possible to prevent the disease, but strongly feel that by changing, if needed, your life style to embody Best Practices, you can delay the onset.


For those not diagnosed, Best Practices Life Style:
1. Mediterranean Diet. Little alcohol. No smoking.

2. Increase physical exercise. You want to get that heart pumping at a faster thannormal rate for a bit.

3. Cognitive exercise. A variety is best.

4. Socialization. We need to be around and interact with other folks.

When you first begin to notice symptoms, make an appointment with a good dementia tesging site. This is usually in a large UNIVERSITY OR MEDICAL SCHOOL COMPLEX WITH A DEMENTIA DEPARTMENT.

Posted: Tuesday, December 4, 2018 7:35 PM
Joined: 7/10/2017
Posts: 481

One more thing that we did (besides all the legal paperwork).  Take care of what you will need in the way of funeral expenses. Buy burial plots if you need them and discuss with a funeral home what you want in the way of a funeral (including caskets), and if possible, pre-pay.  This may seem like a downer, but if you die your children/relatives will be very grateful.

I also have a book that our grown children know where to find that has all the information they will need to know, including all financial info, what bills are coming when each month, all passwords to accounts, detailed information about what is in our safety deposit box, and even a scan of my keyring showing what every key is for.

A reasonably small amount of preparation can save your children hours/weeks of headaches and make sure everything goes the way you want it.


Posted: Thursday, December 6, 2018 8:38 AM
Joined: 8/1/2017
Posts: 143

Just saying thanks to you all for the great advice. My preparations are underway.
Posted: Thursday, December 6, 2018 5:12 PM
Joined: 10/25/2018
Posts: 214

Regarding funeral expenses, I was talking to the funeral home about pre-paying my own expenses, and I asked him about what is the cheapest option. He said donating your body to science. I just downloaded the form for my state of Illinois, and I'm going to include this in my estate plan. The only thing that will have to be paid is a funeral home to transport my body from wherever I kick off to the storage facility. 

There are for-profit donation options like Science Care. The essentially sell off parts. I'm not offended by that, but I read that donations to schools and other research facilities are way down because of the for-profit companies, and I'd rather donate locally.

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