Friend With Dementia - Need Advice Desperately

I’m looking for advice/personal experiences - tia.

I have a friend who lives quite a distance away. It’s become apparent over the past few months that her memory/cognitive skills have really gone downhill. She’s caring for her husband, who I’ve just learned has Stage 4 cancer. My friend tells me that she will only eat a certain food morning, noon, and night, and refuses to say why. I’ve sent her various protein bars, meal replacements, etc. just to see if she would think about eating something different - she told me she threw all of the packages I sent away.
Her son recently lost his SO and is dealing with his own problems. She has family overseas, and while she does have a niece and nephew who live about 100 miles from her they don’t seem to care about her condition.

Here’s where I need advice. I’m going to book a flight and go down there within the next week or so. What can I do in the brief time I’ll be there? Go with her to the doctor and try to get more info? How can I make sure she’s eating correctly, especially after I leave? Should I call her nearby relatives and insist they step up to the plate?

Does anyone know of any services I can contact around Boynton Beach, FLA?

Please, I’d appreciate any experiences and or advice you might have.

Thanks, and please keep her and her husband in your thoughts.
Wallet

Wallet, do all of the above, but know that, depending on how advanced her dementia is, and certainly in the future, she will need help. Every single day. I’d ask her doctor to suggest either in-home, or assisted care options and if you can manage it, try to help her set it up. Expect push-back from your friend, though. No one wants to acknowledge that they are failing.

Having dealt with dementia (more than I ever expected I would) the best advice I’ve read came from a character in a novel (The Bone Clocks, by David Mitchell). It’s this:

I try to interact with my dad as though he is still in there, though I try to avoid sentences that are overly complex, or allusions to people/places that I know will confuse him. I never dismiss him or talk to him like he’s senile and I try to be as patient as I can, remembering when he’s irritable or downright delusional, that the disease took away his ability to be socially appropriate. If I can make him laugh, I consider the conversation a success.

No especially profound advice, but it’s all I’ve got. Good luck and good on you for taking this on.

Do get her evaluated by a senior specialist. She may indeed be declining. Or, she could be suffering from the incredible stress of being the sole caregiver of her husband. Seniors also need special care with their meds, which begin to effect them differently as they age. My grandfather did much better once his meds were correctly adjusted for his age and health.

do contact nearby relatives before you get there, share your experiences and concerns, and try and arrange meetings while you are there.

At a minimum it sounds like your friend needs in-home help to deal with her husband. Depending on what is determined on the the state of her health, she may need help too, or to be placed in a home.

In terms of dealing with her directly, be yourself. Try to remember that the world is a scary place. Do not insist on correcting her or forcing her to remember things the “right” way. Mornings are likely to be better than evenings.

Does Florida not have the equivalent of the U.K.'s Social Services? Do you have any legal rights (Power of Attorney etc) in this situation? Do be prepared to impose upon her son to step up and assume his duties as Next of Kin. It’s not fun and it was pretty disastrous for me in the short and medium terms but it’s the right thing to do.

This http://www.pbcgov.com/communityservices/programs/seniorservices/ is the relevant government agency for that locale. Call their case management section and ask for advice.

Ideally you’ll want to connect with her doctor if she has one, and his. But you’re not going to get anywhere with anybody medical without her approval and assistance. And this will take several days to set up if you’ve not done it in advance of arriving down there. If her cooperation is not forthcoming you may be locked out of the whole game. And as a friend, not family, you may face the agonizing requirement to let this ship sink while you watch from afar.
*If *the woman is seriously not competent (as opposed to simply making very poor decisions) *then *…

the next step is establishing a guardianship for her. If she has no effective involved family then a government agent can be appointed. All this hinges on whether the case management folks at that website are willing to get involved. FL has a lot of experience dealing with senior issues like this. Unfortunately in today’s economic and tax revenue environment the demand for such help often exceeds the supply. So even worthy cases get ignored or sit in the in-basket for far too long.

Your best approach as a non-family member is to be a very sympathetic character as seen by the case manager. If you’re seen as a pushy busybody you’ll get stonewalled. if you’re seen as a long time and very concerned friend there’s a much better chance they’ll tackle the situation vigorously.

To be sure, if she is marginally competent she’s not going to be happy with all this being launched at your behest. From her POV she’s got a lot on her plate and you just made it a lot worse. Be prepared to be hated for your concern.

You are about to stick your head in the middle of a shit-tornado. For all the best reasons and with all the best intentions. I wish you luck and success. I also expect you’ll get well sprayed with shit before it’s over. Enter this with open eyes and strong goggles.

The son can’t be compelled to step up. You can try to cajole him into assuming his duties, but if he can’t or won’t, the state sure won’t make him, because he has no legal responsibilities.

If the situation is really as dire as the OP is imagining, it may be necessary to involve the state’s Adult Protective Services office. Self-neglect and the wife neglecting the husband’s needs because of her own lack of capacity would both fall under their remit.

Do you know why she’s limiting her food intake? It may be because of her husband’s cancer; she may have developed some sort of orthorexia, an eating disorder related to an obsession with eating a very limited diet, often out of fear that other foods will cause cancer (or obesity, or other illness). This is not something you can treat yourself; it usually requires intervention by a professional trained in OCD and/or eating disorders. (Orthorexia is not yet listed in the DSM, which makes getting payment for the treatment very challenging. For this reason, even many eating disorder clinics cannot take patients with orthorexia. Since many of the symptoms are those of OCD, some doctors will use a diagnosis of OCD for treatment and billing purposes.)

On an interpersonal level, I can recommend that you don’t try to fight the *content *of delusions, if she’s having them. Mostly because it just doesn’t work, but also because it can be very stressful for you both. You can address her feelings (“You seem very anxious,”) and you can address reality (“We’re at your house, I’m visiting you this week,”) but if she starts telling you her son needs to be picked up from preschool, don’t try to tell her her son is married and lives in his own house now. “Okay, we’ll take care of that soon. It’s not quite time yet. First, why don’t you show me some of your new knitting?” Often, a bit of delay and distraction will hold them off until the delusion passes.

If you get there and things are unsafe, yes, you absolutely should call her nearby relatives and try to get them to step up to the plate. You can’t force them, but often the shame of being called out will get people to step up and stop denying there’s a problem.

If they won’t step up, then yes, you proceed to the local Senior Services department. And if they can’t help you, you call the police non-emergency line and find out how to report an unsafe senior situation.

It might not be dementia but stress. I’ve read articles indicating that one of several reasons many old folk improve in cognitive abilities when moved to a residential home is that they didn’t suffer from dementia but depression: that seemed to be the case with my grandmother, but as of this writing her short term memory is pretty much shot: some days she’s fine, some days she’ll ask for her jacket because she’s cold and then get angry because “why are you putting my jacket on me? It’s so stuffy in here!”. Get her evaluated if you can.

Whether it’s stress, dementia, depression or something else, the best bet IME is to always treat the person as if they are all there: it’s the third time she tells you the same story in half an hour? Many people do that without being officially impaired; for those who just can’t remember having told you already, treat each telling as if it was new. Ask for details, searching for them forces their memory to work. Is she calling you by the wrong name? Correct her only if the correction doesn’t add to the stress. Does she want to go watch a movie that was in theaters fifty years ago, in a theater that’s now closed? As WhyNot said, distract and reorient her.

And yes, make sure that you inform their family. You can’t do more than what you can do.

This is great advice!

Thanks so much to everyone who responded - your advice was all wonderful, and very helpful.
I’ve been in contact with her overseas relatives, who advised me, in effect, to “stay out of it”. I’ve tried to contact her son again, no response. Senior Services down there has been of limited help, but I now know who to call and contact if things get worse.

I’ve already booked my flight, and will leave in few days.
Again, thanks so much for all of your great ideas, and well wishes. While I know my friend has changed, my love for her will not.

Fingers crossed,
Wallet