Alzheimers/bulimia

Lid

I take care of my sister (age 62) with advanced Alzheimers combined with OCD and severe bulimia.  I feel life is spiraling out of control.  While I used to love to cook, everything related to food is a nightmare.  I rarely cook anymore and have opted to eat out for most meals.  At restaurants she eats her meal and half of mine, but when she gets home she runs to the bathroom to vomit it all up.  Immediately after vomiting, she runs to the pantry to fill up on junk food (cereal, and all forms of sugar).  For a while I locked the sugar in a cabinet with a childproof lock, which worked for a while, then she stared drinking all types of sugar and even blackstrap molasses.  Once these were depleted, she at flour, raw cornmeal, cornstarch, etc.  When I buy milk or cream, she drinks some, then tops off the container with water, so it is valueless for cooking.  Overtime, she ripped the knobs off of the cabinet (that I secured with a childproof lock) where I store expensive specialty ingredients and pretty much devoured everything.

When she vomits she sprews vomit over every surface (every part of toilet, walls, towels etc.). Then quickly rubs her hands on just about every surface she can find (every door and cabinet knob, throughout the house).  She has started just randomly spitting on the floor and in restaurants (some have asked us not to return).  My life has turn into getting her fed and cleaning nonstop.  My home is filthy no matter how much I clean.

She is sundowning so I rarely get more than a couple hours sleep.  I’m still recovering from hip replacement surgery (resulting from a fall I took while taking care of her), combined with a post surgery stroke, that left me partially paralyzed.

Financially, we don’t qualify for any assistance, so I am having to quickly deplete my retirement savings.  I really can’t afford to put her in any care or have outside help brought  in.  

Doctors are no help..they just commiserate and send us on our way. Eating disorder clinics won’t admit anyone with advanced Alzheimers. I looked into palliative care, but it seemed like it was expensive and provided little useful assistance (come one a week to check blood pressure, temp and meds).  She doesn’t yet qualify for hospice.

I know there are no solutions, but needed to vent.  Each morning is so disappointing because I wake up.  If I didn’t wake up this would all be someone else’s problem.  Thanks for listening.

Buggsroo

I can hardly believe what you must be going through. You must be exhausted, your sister needs meds immediately, there must be something the doctors can give her to regulate some of the more extreme behaviour.

I would urge you to lock up all the food, yes all of it. I know this will be difficult, but she sounds like she is a danger to you and others. Good luck.

sandwichone123

If she's already eating up your retirement savings, place her and at least reclaim some of your life. Money isn't everything, and you can't live like this. You may or may not have a legal obligation to provide for her care, but you cannot care for her alone--you just don't have the capacity.

BethL

If she has no money, she should qualify for Medicaid. You are not obligated to pay for her care. 

Maybe take her to the ER, explain the situation and that you cannot care for her and will not be taking her home. Let them admit her and find placement - *

 Thinking that she needs med management and stabilization that could only be provided in an inpatient psych unit, and also that this is a way for you to get her to a facility with some help of hospital social worker or case manager. 

How about talking with an elder care attorney, ASAP, about options?

*this strategy used to work before the hospitals were overwhelmed with Covid but not sure how it will work now.

Lid

Thanks for the suggestions.  Unfortunately, my sister can’t qualify for Medicaid because many years ago, we put all assets into joint with right of survivor to avoid have to probate estate (we had a nightmare settling our fathers estate when we were kids).  So, even though the bulk of the assets are mine, Medicaid views the joint assets as disqualifying.  Also she has a 401k, but I’ve been delaying drawing it down, because it would raise her taxable income which in turn raise her health insurance a lot.  I don’t feel good about institutionalizing her because of horror stories I have heard from friends and neighbors about abuse their loved ones have suffered.  Also, growing up we had some pretty nasty things happen which pushed us together more than normal sibling.  So even though I’m not legally obligated to take care of her, I feel morally obligated nonetheless.

The whole situation breaks my heart.  She once was a brilliant mathematician and educator, and a bit of a clean-freak (in a good way) with a kind soul and a sweet sense of humor.  I see the shell of that wonderful lady that this terrible disease has left behind.  

Sadly, because of my own mental barrier on institutionalizing her, all I can do is lament on the situation. But thank for listening.

Iris L.

Get rid of all sugar foods (cereal bread cookies, etc.).  Sugar causes binging.  I found this out for myself.  Replace with natural fruits and vegetables.  It will be hard because she doesn't have insight.  Read about Prader-Willi Syndrome and see if you can adapt some measures.  Her condition is not genetic but the constant hunger may be similar.

Iris L.

dayn2nite2

I'd sure be drawing down her 401K because with dementia and this eating disorder, she certainly won't live but a couple more years at most.

This is an intolerable way for you to live.  I also thought of Prader-Willi syndrome when you were describing her behavior.  It's exhausting.

Please try to work with a therapist regarding your resistance to placement because she and you certainly need that.

Your post will be a good one for others to read to see what the long-term consequences of money decisions can be.  While you were trying to avoid a "nightmare" that occurred with your father's estate, another kind of nightmare (yours) was created.

Ed1937

In my opinion, you need to see a CELA (certified elder law attorney). You might be surprised what they can do for you. Sorry you're dealing with this horror.

BethL

Would you consider having her admitted to an inpatient psychiatric unit for stabilization? There may be medications they can give her to curb the bulimia. 

This situation is untenable for both of you. Something must be attempted to stop the vomiting. Bulimia does/can kill.

Jo C.

Hello Lid, this situation is certainly a severe challenge; it must be exhausting.   I agree that a consultation with an Elder Law Attorney may be very helpful in regard to the financial position that exists and more.  The Elder Law specialty is necessary as there are so many bits and pieces to such situations and you will need someone very capable to advise and situate you and your sister in the best possible way.

I can imagine your sister has seen physicians, but wonder if she has been seen by a good Gastroenterologist as well as a Geriatric Psychiatrist; there are multiple different conditions that can contribute to the existing condition and behaviors.  Between GI and a good Geriatric Psychiatrist who deals with dementia as well as other psychiatric conditions, hopefully some help may be found.

While your sister may have a 401k that you have been carefully preserving for her; it may well be time to use that asset to provide for her increased care needs in a good care facility.  If she is too young to be taking withdrawals, there are allowances for  special needs; the Elder Law Attorney can discuss that with you.  If she is older, then despite tax concerns, it may be time to access her funds to get her to care.  Her life expectancy under the circumstances may well be less than one would wish and getting her to care may be helpful.   In fact, if she was in a position of increased socialization and activities as well as food management in a setting with structure and routine, she may possibly do a bit better; that would remain to be seen.  It is simply an option to think about.

Do let us know how you are and how things are going; you are a very loving and caring sister; she is blessed to have you by her side.

J.