Early Stage dementia- Who should tell people about the illness?

Nancy Anne

DH has Early State Dementia.  Is it appropriate for the caregiver, in this case Wife, tell family and friends about the diagnosis?  Is it better to let DH tell them.  Also need to inform Financial Planner of diagnosis.  Should DW do it if DH is not ready to talk about it?

Michael Ellenbogen

Is your husband still cable of speaking or making decisions?

harshedbuzz

Nancy Anne-

Hi and welcome to the best club nobody wants to join. I am sorry for your reason to be here, but glad you found us.

Your question has a lot of moving pieces and is not one that lends itself to a one-size-fits-all approach. A lot will depend on your ages, health, and how your husband presents. It's important to understand that Alzheimer's is not just a problem with memory- it impacts reasoning and executive function and can change personality as well. 

The first and most critical thing now is to make sure you have the necessary paperwork lined up for things like POAs and Health Directives; even if this has been done, you'll want to switch your agents. Given the progressive nature of the disease, there will come a time when your DH will be unable to be your advocate should you need one. My own mom almost died because she became critically ill and dad either didn't recognize, care (a lack of empathy is very common in dementia) or know how to get her help. One of the first things I did was to take my mom to a CELA to have POAs drawn up. Sometimes it's necessary to be discrete about naming someone other than with PWD to act for you to avoid hurt feelings. 

Since you have a financial planner, I would share. There may be strategies taken now that can shelter some of your assets should your DH need in-home or residential care. Care is expensive: MCFs near me run about $8000/month, SNFs about $12000/month and an agency HHA runs a little over $30/hr with a 3 hour minimum.

The other piece is that you need to watch your assets and investments. Early in the disease- before he was diagnosed even- my dad got into day-trading with the idea that he was going to grow his nest egg. He lost over $350K principal in their IRA/SEP accounts. Other PWD have taken out loans for friends and family or donated large sums to charity. You might want to lock down your credit and have your eyes on all of the investments.

In terms of sharing the news. I do think it's prudent to give yourself and your husband some breathing space to process the diagnosis and decide next steps. Once the genie is out of the bottle, you have lost control of the narrative.

The first people you will want to tell would be those who would be stepping in if you got hit by a bus tomorrow- so probably adult children if you have them and they would be your choice otherwise a sibling, cousin, close friend. You might also want to share with a friend or sibling for your own support which may or may not work out. Unless a person has gone through dementia with a SO they may not be able to understand where you are coming from. One's grandma having dementia is not an equivalent experience. Sometimes a support group or talk therapist is your best source for talking through the changes in your life and future. 

Like sharing anything that is a difference, there is always a risk of the PWD being seen or treated differently. Over time, most friends sort of disappear when one person in a couple has dementia which can be painfully isolating. But even early on, some PWD become unfiltered or uncharacteristically political making others uncomfortable and sometimes explaining dementia can smooth over hurt feelings or offense. 

HB

Palmetto Peg

I am trying to make a decision about whether or not to tell DH's adult daughter about his diagnosis.  He is flying down to see her at the end of April.  I will be dropping him off at the airport here, and she is meeting him in the airport there.  I do believe he is still able to navigate a non-stop flight from a small airport and get himself to the baggage claim at a bigger airport.  I am not sure, however, if he can check himself into the return flight as his technology skills have all but disappeared.  He may also become somewhat unnerved being in a strange city in a strange hotel.  I am not going because DH's son will also be there, and his 4-year-old grandson, and I wanted DH to have some time alone with his children.  It could be the last time that it is meaningful for him.

I hesitate to share the information with her because I am not sure I can trust her not to tell her mother - DH's ex-wife, who would definitely use the information to hurt DH.  She is a bitter woman and would like nothing more than to tell the extended family members about it.  DH's daughter is my step-daughter and our relationship, although improved as she has gotten older, was always very rocky and I know she can turn in a moment from being friendly to un-friending me on Facebook and blocking my texts.

I would only tell her to help ensure his safety.  Any suggestions?  As always, thanks so much!

Michael Ellenbogen

Have you discussed it with DH?  

Rescue mom

Your family dynamics are extraordinary, and I don’t know what to say about that. In general I believe the children need to know, but…everybody’s different. 

Otherwise, I went first to our financial planner, no discussion with DH. He was not capable, by his own admission, of even basic financial matters nor did he care about it. Our planner has been doing this for years, it was not his first time dealing with a spouse with dementia. That turned out much easier than I feared.

Travel was totally opposite. I had no fear—and I should have. I was absolutely gobsmacked by how badly DH functioned, and how incapable he became, on a trip. It was a place we’d been several times, DH said repeatedly he wanted to go there. (We travelled a lot before).  

But being in a “strange” place upset him enormously. He could not do many of the things he did at home. The list is long—could not dress himself, could not get from car to room—which was just around a corner, could not get anything from fridge. Much more. Things he did at home, he could not do away from home. I could, but it was exhausting, and he was upset. He wanted to leave after a day and said he never wanted to go anywhere again. 

If I had known that often happens, I would have been better prepared. But I did not know they often lose abilities when away. I wish somebody had warned me before. I should have known, but I didn’t. 

As for telling people, I told the kids and close friends immediately (your family situation sounds different, that’s just what I did myself). DH behavior and conversations were obviously off,  and there were rumors going around about what might be wrong with him. I rather people know it was Alzheimer’s, than speculate about other unpleasant things. People were unfailingly nice and supportive when told. 

Your DH sounds not as far along as mine was, and again, so much depends on the person/people. But seems like if he’s going to stay with somebody in a new place, that person would need to know about some impairment? That just seems like basic safety for everybody, including the child. It’s not just forgotten dates or names, it affects judgment as well.

Paris20

My DH is in the majority of those with AD who think they’re fine. It’s called anasognosia, the inability to understand or accept the diagnosis. It’s not denial but just an incapacity to process the information. DH has had it from day one. That meant I was the one who told family and friends about the diagnosis. Those closest to DH, our kids and close friends, already knew that I was worried about DH’s condition before an official diagnosis came in. Telling others, I adopted a need-to-know standard. Since DH was officially diagnosed in 2015, just about everyone we know is aware that he has dementia. Besides, after a very short time, it’s obvious DH has AD. Sometimes the decision of who tells is a given.

harshedbuzz

Palmetto Peg wrote:

I am trying to make a decision about whether or not to tell DH's adult daughter about his diagnosis.  He is flying down to see her at the end of April.  I will be dropping him off at the airport here, and she is meeting him in the airport there.  I do believe he is still able to navigate a non-stop flight from a small airport and get himself to the baggage claim at a bigger airport.  I am not sure, however, if he can check himself into the return flight as his technology skills have all but disappeared.  He may also become somewhat unnerved being in a strange city in a strange hotel.

Coming at this as the adult child. 

IMO, this sounds like a dangerous plan. Your DH probably functions as well as he does because he's in a familiar setting with a daily routine and an excellent caregiver who prompts him in his IADLs and ADLs throughout the day. Take that away and I would anticipate a temporary decline of about one stage in his condition.

In your shoes, I would accompany him, book a hotel with amenities and go to the pool, spa or do a little shopping so he could have time with his kids.

  I am not going because DH's son will also be there, and his 4-year-old grandson, and I wanted DH to have some time alone with his children.  It could be the last time that it is meaningful for him.

I'm confused. Does DH's son know about the diagnosis and the daughter doesn't? Or does he just generally spend more time with dad and has adapted to looking out for him?

I hesitate to share the information with her because I am not sure I can trust her not to tell her mother - DH's ex-wife, who would definitely use the information to hurt DH.  She is a bitter woman and would like nothing more than to tell the extended family members about it.

If you husband has progressed to a point where he's obtained a diagnosis almost a year ago, he's likely going to behave in a manner that will reveal he's had a cognitive shift to anyone who knows him well and doesn't see him day-to-day. I think sometimes a primary caregiver is too close to a situation to have an unbiased sense of how their LO presents to others. My own mom was the frog in the warm pot of water enjoying a nice soak unaware it was about to cook her alive.  Once- pre-diagnosis- when my mom was in the hospital, I flew down to see her (dad hadn't told me she was admitted- the hospital realized he wasn't "all there" and called me as her emergency contact-fun times!) After I left the hospital, I drove to their home and found my dad hosting neighborhood happy hour wearing nothing but a towel. When I related the story to mom, she got defensive and corrected me "it was a bath sheet" to which I snapped "normal people wear pants to entertain". TL;DR- your DSD will likely notice something "off" about her dad and figure it out. And then she may struggle with how to bring the subject up with you or her dad. Why would you do that?

While I can appreciate not wanting to have the ex-wife gloating about your husband's illness, I would expect that doing so would reflect more on her character than anything else. It's an all-too-common illness, not a STI or personal failing.

  DH's daughter is my step-daughter and our relationship, although improved as she has gotten older, was always very rocky and I know she can turn in a moment from being friendly to un-friending me on Facebook and blocking my texts.

Speaking as a daughter, this kind of secrecy would upset me. 

My own parents would claim that they were "private people"; I would describe them as secretive and furtive. (see above story about mom in liver failure being admitted to the hospital- when I asked after mom he told me she was lazy and mean to him) This wouldn't matter so much if I weren't the keystone of their Plan B.

What's your Plan B should you be unable to care for your DH because of an accident or illness or if you are one of the one-third of caregivers who don't outlive their PWD? 

I would only tell her to help ensure his safety.  Any suggestions?  As always, thanks so much!

I would tell her because she's his daughter and has a right to know- so she can maximize her time with her dad and understand what he is going through. That said, she's going to find out. Dementia is terminal and progressive; she will figure it out at some point and realize you elected not to share this information. 

HB

JJ401

Nancy Anne — you’ve gotten some great advice. Don’t be afraid to step in and take over things. 

Palmetto Peg — traveling alone may be problematic. Deviations from routine are confusing. We traveled last fall, and while at home DH functions fairly well, the airport was confusing for him. There is no way he would have been able to check himself in for a flight, go through security, and find the gate alone. Finding baggage claim would have been a huge NO. Some airlines offer cognitive assistance for a PWD traveling alone. You may want to check if it is available for his airline as it has to be booked in advance.

Hotel — Staying alone in a room can be fine or not. My DH left the room to get ice at the end of our hall. He didn’t return. I found him wandering the adjacent hall. He could not return to the room by himself after breakfast in the hotel. He can still use the tv remote at home. He could not use the one in the hotel room. 

From my experience, I’d travel with him and talk to his kids in person. You can give them plenty of alone time with him. If you decide he can travel by himself, talk to the children in advance, and get as much help for him in the airport as possible. He needs somebody (aware) to watch over him. 

MN Chickadee

Nancy Anne - it kind of depends on what cognitive state your husband is currently in. If he is aware of his diagnosis and able to discuss it perhaps let him chose to tell people, and know that he may never do it but has the opportunity for a while. Many of our loved ones, once they have received a formal diagnosis, and once they have gone through the period of grief and shock and processing, are already down a path of anosognosia and unawareness of their deficits and not able to productively discuss it. We've had to then quietly let others around us know, from friends & family to the dentist to sales clerks in order to facilitate these experiences for our loved one. It's not a black and white line when it becomes appropriate to tell people, you just do your best. I understand wanting to protect his dignity and privacy but at a certain point it's better for others to know so they can understand his behavior and know to have more patience, serve him better in whatever capacity their relationship entails, spend more time with him etc. I personally would tell my financial planner about my DH's dementia asap so you can get all those ducks in a row. It's of little consequence to that person other than to give professional advice and it can make a big difference for you. 

Palmetto Peg - I would tell the daughter. Unless there is some very good reason not to like she would take advantage of his finances or something it seems like she deserves to know. Make sure your POA and legal affairs are air tight first. I would also assume it will become apparent to her during the visit, and then she will know you kept it from her. He likely won't be able to hold it together and show no signs of cognitive shift for that long in a strange place. I would get ahead of it and tell her since she will find out anyway. 

I would be very concerned about your DH traveling alone. You cannot assume he will function the same once he is in an unfamiliar setting. Airports and planes are not a friendly place for a PWD. Many rules to be followed with serious consequences. They have cracked down on non-compliance of their rules after covid protocol fights. Tight timelines, commotion and bustle. Finding the right gate on time and the right suitcase off the baggage claim is exhausting for someone without dementia. It sounds like a nightmare for a solo PWD. Same for a strange city and hotel, that is a lot to manage and his cognitive reserve might go bust and then what? What happens if he doesn't turn up on the other end?Or the daughter sends him off from dinner and he doesn't turn up at the hotel? If it were me I would accompany him on the flight and find other ways to busy yourself once he is with his kids. Rent a car and drive to another location to explore, find a spa, whatever. In the event you do choose to send him alone, which I hope you don't, I would investigate all services offered via the airline for people with disabilities, and tell his daughter about his dementia so she can help him with the logistics of returning. 

Rescue mom

Chickadee reminded of something I thought I’d never forget….I was on a flight a couple months ago. During boarding, a woman became hysterical, screaming incoherently, refusing to sit or move. Her husband kept saying she had Alzheimer’s, she’s never done this before, she’s always been fine, we’ve flown before, etc.

Medics and security got involved. Take-off was delayed about 40 minutes. While people in general are really helpful and supportive when they know dementia is involved, on this airline, these passengers and these security…not so much. The poor woman was obviously terrified and irrational. Her spouse wasn’t much better, just kept saying she’s always been fine before.

Nancy Anne

Thank you for your message.  I really appreciate the information and time you took to reply.

I did reach out to our financial advisor, and it was such a relief to let him know about DH's dementia.  Thankfully, we updated our POA's recently and everything looks good on that end.

I will be taking the lead on all our accounts. 

It is so much better to act and not procrastinate about what to do especially when it comes to financial matters.

I will continue to try to engage him in difficult conversations, but I will have to make the final decisions.

Palmetto Peg

Thank you all for your helpful suggestions.  I am going to tell his daughter before he goes.  His son (my step-son) does not know, either., and I will be fine if step-daughter tells him.  I have been really torn about telling them because of the family dynamic, and because I know my DH doesn't want them to know.  He admits to "memory problems", but nothing more.  

I hear your concern about him traveling alone, but I really am confident that he can do this.  Our airport only has 6 gates, and security is right in front of the door where I will drop him.  In Miami he has agreed to text me and his daughter as soon as he lands, and he will do that.  If she knows, that he has cognitive problems, she will stay in the airport after his flight lands and go to his gate to intercept him.   I just don't know what to do.  My step-son has made it very clear that he has absolutely no use for me, and my step-daughter is off and on.  My DH has been somewhat estranged from his son due to the way step-son treats me and some truly terrible derogatory things he has said about me.  I was hoping to take myself out of the equation and let them find some sort of relationship before it is too late.  If I go and stay at the hotel, my DH will be  upset and want me to join them every minute, which defeats the purpose of the trip.  His room will be right next to hers.

I am going to give this some serious thought and try to come to some conclusion I can live with. I know that having his ex-wife gleefully tell people about his issues reflects more on her than on him, but I just hate to see him hurt any more than he already has been by her.  

A tough road this is - thanks for the help navigating it!

Nancy Anne

Thank you.  I appreciate your input.  What a journey we are on.  It's so unfair that a brilliant man can no longer handle his financial affairs.  He realizes it which makes it even more sad.

It's difficult to get him engaged in anything else as he is obsessed over documents trying to make sense of them.  He has told me I will have to take over.

Rescue mom

Peg, I just have to ask, have you and/or your husband been through MIA in the last few years? I see your drop-off airport has six gates, it’s good to have such a close drop-off, and you know the language and area.

 The Miami airport is hard to adequately describe; bedlam, chaos, huge,  loud come to mind…it’s an adventure in itself, including  languages…your daughter has probably flown through there regardless. 

It’s all hard for all of us, sorry you have to wrestle with these family issues.

JJ401

Nancy Anne wrote:  He has told me I will have to take over.

That had to be heartbreaking for you to hear, but it’s also wonderful. It makes things so much easier when the PWD makes the call. My DH always wrote the household checks. He was having difficulty balancing it one month. I asked if he wanted me to do it and he handed me the checkbook. He hasn’t touched the household checkbook since. 

Palmetto Peg — I know it was a hard decision to tell your SD. I put off telling mine for a long while. You mention SD meeting him at the gate. If that is your/her plan be sure she gets clearance for that in advance. You can also get help for him with TSA security. https://www.tsa.gov/travel/passenger-support  That is one thing I should have done in advance. I got ‘randomly selected’ for additional security and DH and I got separated for a few minutes. Those few minutes were confusing and anxious laden for DH.

mommyandme (m&m)

Peg,

On both ends of his flight travel someone, you and your step-daughter, should be able to get clearance to accompany your husband through security and to the gate.  You can wait along side him til he gets on the plane.  I’d do that at least so you can see how he truly operates in this situation.  What if he gets confused on where the restroom is relative to his gate and misses his flight? I can even get myself confused without a diagnosis. I think it could be an important fact-finding mission for you if nothing else.  You might gain some valuable information to share with his children to help on the flip side.   Your step daughter could also meet him at the gate on his arrival.  He doesn’t need to know the real reason, it’s only because you all love him and you’ll be missing him and she’s so excited to see him.  (therapeutic fib).

I would not let him navigate alone knowing that he has any diminished capabilities. Set him up for a successful trip proactively.  

Palmetto Peg

Rescue mom - I was in the MIA airport about five years ago and it was bedlam then.  They are both flying the same airline, so I am hoping she could get off her plane and wait for him in the terminal until his lands and then they could both go to the baggage claim together.  My DH and I flew together through Newark airport about 2 months ago.  He strode ahead of me in his rush to get to the gate - nothing new - and went to the bathroom unassisted.  I have seen some signs of deterioration in the last month or so, and he has been more anxious, depressed and forgetful.  We have asked the doctor for an appointment to see about increasing the Trazadone or adding an anti-depressant to his pills.

JJ401 - thank you for the TSA link.  I will definitely consult with them and see what can be done.  I do know I am too close to the situation and may be overestimating his abilities because I am always here to jump in the fix a possible problem before it escalates.

M&M - I like the fiblet idea and he would absolutely believe it.  He has always been a proud man with a very big ego, and I am not going to be the one to tell him he needs "adult supervision" because he wouldn't believe it anyways.

Now - I just have to decide if staying in a hotel room alone is going to work.  Even if there room are next to each other, she will not hear him if he decided to go for a walk at 2 a.m.  He hasn't done that here yet, but he does get up and roam around the house and get a cookie or whatever.  

Thank you all so much!  Lots to think about.  Whatever I decide for this trip, I know it is the last time I will even consider sending him on a trip by himself.

Rescue mom

It’s great your daughter is traveling there too. Hopefully that works. One small other thing you may already do…can you pack and ship his luggage there, to the family or the hotel,  so they don’t have to deal with any baggage claims? I often do that myself, it can make things a lot easier.

C. Miller

Hi - "Strategies taken now that can shelter some of your assets etc."

 You articulated this extremely well! Sounds like I should get a financial planner? That is my biggest concern now! Short-mid-term, I can manage however at some point all of mother's savings/retirement etc. will be depleted. Plus the journey has just started.

Stuck in the middle

C. Miller, welcome to the board.

I think the main thing you need is a certified elder law attorney to explain how to set up her affairs so she will qualify for Medicaid when needed to pay for her care.  You will also need medical and financial durable powers of attorney so you can take over management of her affairs as it becomes necessary.

You will get more and better responses if you start a new thread by clicking the "add topic" button near the top of the page.

Stuck in the middle

Peg, I would not make any plans that rely on airlines running on schedule.  If the daughter's flight is delayed or cancelled, she will not be at MIA to meet her father.  She can get the flu, her flight can be overbooked, lots of possibilities.

JJ401

Palmetto Peg

“…he does get up and run around the house and get a cookie or whatever…”

If DH roams the house at home during the night, even though he has not left the house, the odds are great that he will leave the room. While at home he recognizes that he should not be leaving the house in the middle of the night, he may not equate leaving the room with going outside. If he looks for a cookie in the middle of the night, I’d be afraid he’d leave the room looking for the kitchen.

TSA assistance is great for going through security at the departing airport, but it won’t help at the arriving airport.  Call the airline and see if you can arrange some assistance at arrival. If the daughter is meeting him, perhaps you could arrange someone to assure he meets the daughter.

ETA — In a previous post you indicated that you would be dropping him at the door. You may want to reconsider and park and go in with him. If you sign up for the TSA assistance, you still have to access it. They most likely are not waiting for him to arrive. He, or someone with him, has to identify that assistance was requested.

harshedbuzz

JJ401 wrote:

Palmetto Peg

“…he does get up and run around the house and get a cookie or whatever…”

If DH roams the house at home during the night, even though he has not left the house, the odds are great that he will leave the room. While at home he recognizes that he should not be leaving the house in the middle of the night, he may not equate leaving the room with going outside. If he looks for a cookie in the middle of the night, I’d be afraid he’d leave the room looking for the kitchen.

JJ-

This reminds me of an issue a dear friend had traveling with her mom in the early and early-mid stages of dementia. Her mom would wake up in the middle of the night to use the bathroom or get a drink and become disoriented and wander out into the hall in her nightgown. More than once my friend found herself chasing mom down the hall in her bathrobe in various Disney Vacation Club locations and even once on an Alaskan Cruise about the time people were returning from the clubs. 

I put my parents up in a hotel when I moved them from their temporary apartment to a new home. Dad emptied the minibar, struck up conversations with random little kids and never did figure out how to enter the room. Technology was not his strong suit by this time. 

Rescue mom

More as an FYI to Stuck and others, and a vent….I have flown 3 times since October, on 3 different major airlines. All 3 had last-minute gate changes and/or hours of delay, and/or outright cancelled after take-off time.  None of that due to weather; and I could see similar things at other gates in the boarding area.

There are record numbers of passengers now, while airlines and TSA say they are extremely short-staffed. Flying is not easy anymore, yet I’m doing it again soon, as will many others. Just be prepared, a lot of the airport help and service we had pre-covid no longer exists.

harshedbuzz

Palmetto Peg wrote: 

I hear your concern about him traveling alone, but I really am confident that he can do this.  Our airport only has 6 gates, and security is right in front of the door where I will drop him.  In Miami he has agreed to text me and his daughter as soon as he lands, and he will do that.  If she knows, that he has cognitive problems, she will stay in the airport after his flight lands and go to his gate to intercept him.   I just don't know what to do.  My step-son has made it very clear that he has absolutely no use for me, and my step-daughter is off and on.  My DH has been somewhat estranged from his son due to the way step-son treats me and some truly terrible derogatory things he has said about me.  

The relationship issues add a layer of risk to this enterprise. If you have noticed a deterioration in your DH's function, assume it will be even more observable in an unfamiliar setting to his children who will find him changed since the last visit.

In that context, accompanying him might be prudent. When there's family discord around a PWD- either siblings around a parent or step-children from a prior marriage, it is not unusual for one to accuse the POA of not being up to the task of managing money or safety issues and will coerce the PWD to make financial choices that put Medicaid eligibility at risk or even to give them the POA instead. One woman here had the children from her husband's first marriage gain custody and divorce him.

Alzheimers (alzconnected.org)