Do you tell lawyer about the dx?

Ellsie

Hi everyone,

I am at the very beginning of this journey.  I have known something is wrong for over a year.  We have seen a neurologist and have a tentative diagnosis of Alzheimer's.  He is scheduled to have a neuropsych but that takes several months.

Most people would not realize there was anything wrong.  His personality is still the same.  He only missed 2 things on the mini mental status exam (drawing intersecting pentagrams and remembered only 2 of 3 items).

I am trying to do everything I can now while he is still doing so well.  I want to make an appointment with an attorney to draft new wills and any other documents.

Here is my question: Do I tell the lawyer about his diagnosis?  I am worried DH won't be allowed to sign documents if I do.  

Also, what other things should I be working on during this early phase?

Thank you to all of you who share your knowledge on this board.  I am very appreciative.

Quilting brings calm

Edited:   I’ve removed my first paragraph - later  posters had differing opinions about telling the lawyer and they all made very good posts  so my No response was incorrect.  Leaving the rest of my post below though. 

You want to get the wills done, a trust done that allows you to keep the house and so forth,  durable and medical powers of attorney.  You may want to get his name  off of items like the house and cars that you may need to sell for his care later.   Ask the lawyer what he recommends for people your age etc for future planning, 

Discuss future care options and living will type things with him while he is still competent. 

Give some thought to where you two want to  live.   Is your home one story or two?  Does extended family live close enough to help out or should you move closer to them?  Many offspring are trying to help out from several states away and having to move the person with dementia close to them at a time of crisis.  It’s not a good thing. 

Rick4407

Hello Ellsie.  If your husband is sensitive about this, most spouses are, you may be best off phrasing all of the discussions on legal items etc as "in the event either one of us is impaired".  I did it that way it avoided unhappiness and the documents worked in either direction.  I recently sold a piece of property with those documents without a problem, though they did want a copy of the durable POA.  

There are attorneys whose specialty is the "elderly" (CELA) if you anticipate needing to use medicaid in the future you should also consult with one of those. 

Reading lots of posts here will help in preparing for what's next.  Good luck, Rick     

michiganpat

We had our wills and POA's updated recently. I did tell the lawyer ahead of time just in case he needed to do something special. He asked if my husband could still sign for himself. I said yes and that was it. I don't see where he did anything different. Our POA's still have us as each others primary but we also have an alternate if necessary. My husband is also early on in some sort of dementia.

Donr

We went to a CELA attorney. I told her the situation and did not want to hide anything from her. We were able to talk about ways of handling placement if I needed to place her and more subjects if I died first. We talked about the need for a trust and much more.

Joe C.

I told our CELA about DW memory issues before we both started updating our plans but DW did not have a diagnosis at that point because she refused to see a neurologist. The attorney did ask if she would be able to understand what we’re were discussing/deciding and at that point she was completely able to understand what we were doing. I think if you speak with a CELA they are probably pretty use to dealing with these situations and can advise you. My thinking is if you do not completely inform the attorney how can they give you the best possible advice for your particular situation.

M1

Agree with Joe C., I would absolutely tell the attorney.  The bar for competency to sign is pretty low so should not affect your DH.  However:  it does affect your documents; you likely should not name him to be your power of attorney, for example.  The whole point of going is to plan ahead, and the attorney, just like the doctor, needs to have all the relevant information.  And you definitely want a CELA--look up by location at nelf.org--for help with estate planning, never too soon to be thinking about how you might finance long-term care.

Good luck, and I'm sorry you're facing this.

Jeff86

I told our attorney about my DW’s. dx in advance of meeting with him.  Your DH is so early in his disease progression that it would not be an impediment for him to sign new documents—it sounds like he can discuss and will understand the contents of the estate planning documents he’ll be signing.

My DW’s AD did affect how our documents were drafted and how our assets were re-titled.  For instance, I am co-trustee with her on her revocable trust but she is not a co-trustee on my revocable trust.  I hold her POA but she does not hold mine.  And so on.   

You are doing the right, important thing to get your documents in order now.   Good luck.

Ed1937

You are right to get this out of the way now. Waiting could be very bad news for you.

My wife never knew she had dementia because she did not hear the diagnosis when it was read. But I was there, and I heard it. I did not want her to know because of severe depression in the past, so I went to the first meeting without her. I told the lawyer everything, and I'm glad I did. The fact that someone has dementia does not stop them from signing whatever needs to be signed. Competency is what is needed.

I would suggest that you get a CELA (certified elder law attorney) to handle everything for you. You want someone who is up to date on changing laws so they can do the best job for you. 

JJ401

Competency has a really low bar in my state. I think it’s underground. My MIL signed her POAs while she was a resident in memory care.

Adding —  there was no dispute among the children — they all agreed on who was to handle things (the same person who had been handling things for years.

Crushed

JJ401 wrote:

Competency has a really low bar in my state. I think it’s underground. My MIL signed her POAs while she was a resident in memory care.

In almost all  states  there are different levels of competency for different functions.

e .g.  people who can't make contracts can often consent to sex.  I had to interview my mother who had vascular dementia to determine if she was competent to make a decision to move to Colorado with my sister.   My wife signed a trust agreement 5 years after the Alzheimer's diagnosis.  She clearly understood the basics and that was all it took ( As trustee I am a fiduciary with full responsibility for her well being )  That was really all she had to understand

Lots of folks in memory care are competent to sign  a POA  Ive done the oral explanation on several occasions as a third party.    

And never ever ever hold back critical information from your lawyer . In any kind of family dispute it is like handing the other side a hand grenade

harshedbuzz

I would put sharing with a CELA in the same league as sharing with a physician- it's kind of pointless to go through the motions of an appointment if the professional doesn't know the whole story.

That said, this can be done discretely and ahead of time either by attending an initial appointment alone or via a phone call. We did this with my dad after he was diagnosed. I took my mom first and discussed what we would need to do with the documents and then the CELA stopped by dad's rehab and had him sign his. 

I was secondary agent on dad's POAs and primary on my mom's. We let dad assume they were mutual but swapping mom's primary was one of the first things I did because she almost died with him as her advocate. The winter before his diagnosis, she'd developed an autoimmune hepatitis. In addition to being too weak and confused to take care of herself, she was the color of a school bus. Dad either didn't notice or care- a neighbor found her wandering at Publix and took her to the ER. 

They sold their homes and bought a new one nearer to me. She signed for both of them for the first one and I hand delivered the papers to the title company. I signed the papers for both of them when she sold the second house. When she bought the new house, dad was moving into the later stages with placement looming, so she put the house in her name only. Their cars were already in their names individually. Dad's neurologist told him not to drive anymore, so in a fit of pique he agreed to sell it lest anyone else drive it. I took him to webuyanycar.com before he could change his mind, so we didn't need to deal with the POA for that. 

HB

Gig Harbor

I met with my CELA alone for the first visit. I brought a copy of our old will. I discussed what I hoped to accomplish. My husband was fairly early on and when he met with the lawyer he said he was willing to sign all the papers. There were not many changes needed but I did take him off as my POA.

Ellsie

Thank you everyone for the wealth of information.  I will go ahead since my husband is competent at this point.  I don't know how soon things will change.

I hadn't thought about car titles, but will add that to my list.

Ellsie

I forgot, we do live in a 2 story home.  I was thinking we could add a shower to the 1st floor and there is a room that could be used as a bedroom.  I am worried moving now could be overly stressful.

harshedbuzz

Ellsie wrote:

I forgot, we do live in a 2 story home.  I was thinking we could add a shower to the 1st floor and there is a room that could be used as a bedroom.  I am worried moving now could be overly stressful.

My parents moved a lot around the time of dad's diagnosis. They left their place in FL in July and came north to MD for the summer where dad had a psychotic episode that their local ER dismissed in late August. I encouraged my mom to drive him north to PA where I met her at the border and took them to an ER at a teaching hospital in Philadelphia. Dad was admitted and given a tentative diagnosis. The hospital discharged him to a rehab north of the city (near me) and mom and I made the decision to move them while he was there.  When he left the rehab in early October, we had them set up in an apartment in a lovely senior community and put the house in MD up for sale. When it sold, my mom decided she really wanted homeownership, so we found her a terrific carriage house twin in a 55+ community with all the amenities into which I moved them in early February. 

I am sure moving sort of stressed dad out initially but he soon got over it. TBH, I'd been warned about hastening the disease progression but didn't see it. The week before he moved to the final house, he waved at the community as we drove home from a doctor's appointment complaining that "your mother would never consider this lovely community" which I took to mean I chose well. After a time dad was sort of confused about where he was and often thought he was in FL which made him happy. He's been gone a couple years now and the house has been almost ideal for my mom. She has lovely neighbors, a couple pools, activities if she wants them and can walk 0.25 miles to a large shopping center with a Chicos and Talbots plus grocery, bank, pharmacy and restaurants. In deciding where to live with dementia, I think it's also important to consider where the surviving spouse will want to be in Stage 8. 

Remodeling may be an option. If your DH lives out the disease in your home, at some point it will become something of a nursing home for 1 which may or may not be doable. Construction would also be stressful for the PWD- so adding a shower may be upsetting to him. If it is your plan, you'll want to do it sooner rather than later. When designing it, ideally you'll want zero entry so you could wheel a shower chair in and also large enough that a second person can enter the space to assist with toileting and showers- many first floor powder rooms don't have this kind of space available for conversion. 

TBH, I am more than a little annoyed my parents didn't make this decision back when dad could have participated. By the point we did this, it was best to leave dad out of it and mom was busy caregiving, so I was in charge of logistics. He was in rehab when I set up the apartment, but when we moved to the house I put them up in a hotel for the weekend and unpacked everything with the help of DH, DS, my niece and the help of professional movers. 

Good luck with making decisions that work for you.

HB

ButterflyWings

Hi- yes I did disclose that information because we were facing some urgent decisions with a newly diagnosed, early mid-stage LO. I needed the best Legal advice based on immediate and future needs, which meant explaining why my DPOA role was effective immediately, why DH could not be my DPOA or outright beneficiary anymore, etc. I needed an appropriate, concrete, plan and proper guardrails which I did not think could happen without telling the atty his dx. 

Generic was not going to work for our situation; it was already complicated by a business and a few in-laws and steps historically over-stepping boundaries financially with our blended family.  I didn’t see any other way to stop the dilution of assets plus exploitation that also was revealed (later) to be occurring by colleagues to address immediate 911 “OMG we’re about to be homeless & how are we going to eat” without explaining what we (I) was dealing with. 

That’s just one situation though. Definitely weigh it with all the other replies you will get here. Everyone’s situation is different. Great that you are getting this addressed early!

Ed1937

harshedbuzz wrote:

When designing it, ideally you'll want zero entry so you could wheel a shower chair in and also large enough that a second person can enter the space to assist with toileting and showers- many first floor powder rooms don't have this kind of space available for conversion. 

HB always makes good posts. While the above is good information, if you want to remodel, and for whatever reason that is not an option, here is what we did. We removed a bathtub, and replaced it with a shower that has a rather low step over. I was reluctant to do that because I knew I would have to get in the shower with her, and I was concerned with space issues. That has not really been a problem, although more space would be better, but it's doable. My wife has problems with balance, but I put two bars in. One she can grab when she is just getting in, and another large one to hold onto once she is in there. It also has a built in seat. This remodel been a lifesaver for us.
 

Ellsie

Thank you everyone for the remodeling advice.  All the details are good to know.  I thought I would need a shower that would accommodate a wheelchair but hadn't considered needing space for another person.  

I found a Certified Elder Care Attorney at nelf.com and explained our situation to the attorney's assistant.  I have a phone meeting in 2 weeks, most likely followed up with an in-person meeting. Thank you everyone for the advice re: telling the truth about DH's tentative diagnosis.

We are fortunate to have long-term care insurance, but my understanding is our policy only covers 4 years for each of us.  I have no idea how I would know when the 4 years would begin.

Thank you again for so much helpful advice. Sometimes I just want to cry because I feel so alone with so many things to sort out, but then I come here and feel better.  

Stuck in the middle

Ellsie wrote:

We are fortunate to have long-term care insurance, but my understanding is our policy only covers 4 years for each of us.  I have no idea how I would know when the 4 years would begin.

  

Ellsie, your LTC policy should state when eligibility begins.  You might read it and take it with you when you see your attorney.  Your attorney can also tell you what you can do to pay for care when the four years end.