I’m wondering if anyone has suggestions for dealing with someone in fairly late-stage Alzheimer's combined with Bulimia. I’m the sole caregiver for my younger sister with these issues. She binges and vomits after every meal or even a small snack. While she does eat normal meals, she can eat a full bag of sugar in a week, and loves raw ingredients like flour, corn starch, shortening, etc. (I’ve talked with several doctors, and they say let her binge on whatever she wants (even sugar), because of her extremely low body weight. I do have my pantry stocked with other healthier foods and a variety of sweet cereal, cookies, etc. but she consistently goes for raw ingredients.
I feel like I’m either feeding her, bathing her, or cleaning after her all day and into the night (when vomiting, it thoroughly covers much of the bathroom including the floor, toilet, sink and even the mirror as high as I can reach. Of course, this is combined with liberal doses of poop, rubbed pretty much everywhere. I can’t get her to clean her hands so pretty much every surface in the house has a layer of icky stickiness that I clean several times a day. The pantry is similarly a mess from where she spilled whatever she is binging on. The floors throughout the house is specked with spit.
I feel like I’m cleaning nonstop, to no avail. Also, I get very little sleep because she is sundowning. I can’t afford outside help because her income and mine are above the level where we can get any assistance. Yet nearly all of our combined income is going toward her care. So, there’s no money for housekeepers or outside caregivers.
I’m wondering if anyone has ideas on dealing with Bulimia/Alzheimer’s. This has been going on for about 5 years. Is there any hope she will eventually just forget this behavior as her Alzheimer’s continues to progress? (I’ve heard that alcoholics sometimes forget to drink, but her bulimia shows no sign of abating).
Doctors are no help and have no suggestion other than letting her do what she wants. Anyone have ideas?
Could this be a variation of Pica.
Pica is usually non-food items.
But uncooked flour, sugar, salt, raw ingredients= same as non-food items and can hurt her.
Of course don't allow her to ingest what is not good for her.
The doctors were not listening to you. All they 'heard' was bulemia = over eating, binging on food, then vomiting.
Do not know what to do about it. Thinking a behavioral unit where restraints might still be legal.
Seems easy enough for a medical professional to say let her eat what she wants when they aren't cleaning up the mess. At a facility, she wouldn't be able to access the kitchen to drag out raw ingredients. And the food would be more controlled going it to prevent the uncontrolled coming out that she does now. Also, if food controlled to the point of not throwing up right away - she might actually gain some weight. The spit and the poop all over the surfaces of your home is a good indicator she needs help you can no longer provide.
Talk to her doctor about needing medical necessity documents and talk to the atty about how to pay for it. (There should also be a legal aid in your area that might be able to handle the atty fee for payment based on her income)
The doctors are abdicating their responsibility to provide wise care. You either need new doctors, or to find a way to rigidly control your sister's behavior so that she cannot vomit every time she wants to do so. Which are you capable of doing? If talking back to doctors frightens you, do you have a friend who can be aggressive on your behalf?
Your sister needs memory care placement and much more help than you can provide. Consult an attorney to find out how this might be possible for you.
I am so very, very sorry you are in this position.
If she is over the monthly income limit within your state, have you tried to set up a QIT account? This would allow her overage to go into that account and provide her the benefits. Then Medicaid would pay for a nursing home or send in home care to provide respite.
This is in a nutshell, it’s more complicated then this of course.
I would be concerned about the raw flour. There have been cases of salmonella traced to raw flour.
I would lock the pantry. Allow her access only to items that she can/should eat.
A question for you is she vomiting because she physically makes herself vomit or is she vomiting because she binges. There would be a difference.
If she is vomiting because she eats so much by curtailing the amount she would not vomit.
However if she is making herself vomit then she would do that no matter how much she ate. And to stop that she would need to be supervised each time she ate. That means locking up all food sources. (and in this case non food items as well)
Contact your local Area Agency on Aging and see if she would qualify for help from any source.
Are there adult Day programs that she would be able to go to? that would give you a break and she would be supervised.
I think also you may need to talk to new doctors.
There are medications that can help limit anxiety as well as OCD tendencies.
There are so many other medical conditions that can result from the vomiting that this needs to be controlled. Eroded esophagus, aspiration pneumonia, eroded teeth just to name a few.
OK>>>after writing what I did I went back and read other comments/suggestions and your response to some of them.
So she is making herself sick.
She has had her throat checked and there are no problems, that is good.
When I mentioned medication I did not intend to imply that she should be drugged to a zombie like state. But enough that will relieve the anxiety that she has probably had her whole life. (very smart people tend to try to live up to what the rest of us might consider unrealistic expectations and when they can not do that that "failure" is a real blow)
Please reconsider medications that can help your poor sister.
You should keep the flour locked up with the other items you secure.
As a young woman I would PLEAD with her to eat, but that never worked and I was smart enough to stop pleading as I learned a little more.
If you have access to legal help, could you make certain that you are handling the financial side of her care in a way that’s safest for each of you?
My initial thought after reading over your comments several times, is that what you’re living with now “MAY” not be the best for either one of you. I say that with total respect for your situation.
One small thought- it may not be the best thing for you as you continue, to base too much of your decision making on your recollections of all the wonderful things about who your sister was in the past.
Looking back too much may make it much harder to make balanced decisions about your sister’s future. For you both, your objectivity is important.
When my mother’s dementia was diagnosed, at 89, her eating did more or less normalize, and she lived to 95.
Another thought. No matter what you decide about ANYTHING, you will not be “giving up” on your sister, because you love her. Just be very VERY careful to consider the balance between the value of your life and hers.
It is very touching what you wrote about your sister.
While I am not in the same situation, but caring for husband with PD progressing at alarming speed and if results of symptoms showing are any indication of more then things will only get worse.
I do believe like you very strongly any institution will be totally wrong for my husband. There is not enough time and space to start on that subject, just know I understand.
My husband, like your sister, is brillant and his knowledge in several areas is unparalleled, starting with his profession as CPA, languages, history, geography, history, politics, just to name a few. He was hockey coach, avid skier, runner etc.,
To place him in any institution would be cruel and unnecessary, as I believe strongly like you, care is at best inadequate, even attending day program for PD he finds it humiliating, he goes to give me some relief at least for now, once or twice a week. I don’t anticipate he will continue for long.
I am extreme believer in providing the best possible life for him, comfort and familiarity and while I don’t claim to be super caregiver, all his needs are met, we tried too more than several treatments, he gave up PT lately, it is too much pain, it is OK, his decision.
My resilience sustains me and I have no doubt or unrealistic believes how this is going to progress or end.
I built strong support of friends and while I am not asking for help, but knowing they will be here when needed is enough.
I am finding ways to cope, anticipatory grief is one, there is wrong belief in guilt attached to that, but, those steps show actually how much care and how much compassion we exhibit. One professional advised me to detach , which as I am somewhat artistic, I tried to maintain my passions for making jewellery, design bags, decorating. My passion for travel is now reduced to making exotic dishes and lots of reading about different cultures.
I realize I am no help to you, just sharing is sometimes enough.
Right now she’s in a place that’s familiar and comfortable. She has someone who CARES and doesn’t have to spread their attention amounts many other individuals. While I admit I’m in over my head, I would posit that many staff members in assisted living and memory care units are likely over their heads as well. How many staff members in these facilities are paid minimum wage and have little or no post secondary education? I’d also posit that these staff are spread too thin amongst too many Alzheimer’s patients to give any one person the attention they need. Also, the exposure to disease, such as Covid is unacceptably high from my position.
I have sought medical treatment from numerous doctors and specialists ind several states. I am generally following their directives (except to drug her into a “zombie” state…which I refuse to do, but a facility would do without question). She gets medical exams every three months by a GP (including bloodwork) and every 6 months by a neurologist who specializes in Alzheimer’s. So I guess I’m saying that I’m doing the best I can given the situation. If eating raw ingredients (at the direction of several doctors eventually kills her, I guess, so be it. The life she is living now (or would live in a facility) is not something she ever would have wanted. Death come to all of us eventually and I think it’s my job to make her as comfortable as possible for whatever time is left for her.
sorry for the long response, but I really do believe that I’m giving her the best care I can under the circumstances. Am I tired of cleaning constantly and still be faced with god knows what every time I touch any surface. Am I tired of buying Clorox wipes by the case and having a plethora of cleaning supplies stuffed into closets and cabinets throughout the house? Am I not tired of sleeping? You betcha!!
but at the end of my life, I will take comfort in knowing that I did everything I could do. One of my religious neighbors told me I’m going to hell because I clean on Sundays (and every other day). I guess I’m ok with that. If there is a God who out there who demands worship rather than caring for a lost sheep who is suffering, then I guess I can accept hell, because I’m already living it.
you wrote:
"She was sweet, artistic, and talented at everything she attempted. She had a wicked sense of humor and was a loving, loyal and true friend throughout my life."
first of all:
you're an amazing sister. kind, loving.
secondly:
the fact that you warmly wrote that about your sister...i bet YOU'RE very sweet, artistic, talented, too :).
i hope somehow there will be solutions, to make things easier for you and your sister.
hug!!
The Alzheimers Society has helpful tips on managing food issues which develop as part of dementia. What they don't address is what to do with a person who already had the eating disorder, established long before early onset Alzheimer's arrived. But *somebody* must be doing that.
It makes no sense to allow your sister to eat 'raw ingredients' like bags of sugar, flour, corn starch & shortening. Any doctor advocating such a thing should not be practicing medicine anymore. Lock up those items in your home and allow your sister access to ONLY certain foods, that is the logical answer to this illogical dilemma. Then accompany her to the bathroom immediately after she eats, every single time, to minimize the aftermath of her vomiting behavior. Maybe put mittens on her hands after she eats to prevent her from making herself vomit. You can search "Alzheimers mittens" on Amazon.
It also makes no sense to me that you'd be agreeable to such a dreadful caregiving situation going on in your home for 5 years. You're constantly cleaning up toxic bodily waste, not sleeping, and saying there is 'no money for housekeepers or outside caregivers.' How are you functioning?
I think you need to schedule a meeting with a Certified Elder Care attorney asap to see how to go about getting your sister on Medicaid (there must be a way) so she can get placed and receive appropriate care in a facility. You are unable to give her the care she needs at home, alone, and what happens when YOU need hospitalization after you break down? What happens to your sister THEN? This is an unmanageable situation long term and both of you are at your breaking point in short order. It's a miracle you haven't reached it yet, truthfully.
Please see the CEC attorney right away for suggestions about what to do next. What you're doing now is clearly not working for either one of you. Your heart is in the right place, but you're not qualified to care for her; you're in way over your head. Your sister needs a TEAM of people working 24/7 to care for her now, not one tired and burned out woman who's done her best up till now. Recognize that it's too much, and wave the white flag of surrender now.
In closing, I'd like to remind you that you deserve a life too. Just b/c your sister is sick does not mean you have to give up your entire life caring for her. How do you work? How do you earn quarters for Social Security later on for your retirement? What will become of YOU once your sister passes on? There are more questions here than answers, that much is certain. Whatever is going on, though, I'd like to wish you the very best of luck looking after YOURSELF here too, not just your sister. I hope the lawyer can help you figure out something sustainable for BOTH of you.
She *has* been dealt a rough hand.
But she can't be first person with a major eating disorder who has lived long enough to develop dementia, and she certainly won't be the last. Have you tried searching the "learned journals" for research papers and articles? - not so much for tips about what to do at home as for possible contacts who might at least take an interest and not just throw her in the too-difficult bin.
My concern here would be is something being missed. Is there some problem with her swallow that is allowing food to pool in her esophagus after swallow, and then feel the need to relieve herself of the "clog". But she is also showing compulsion in her eating habits.
You are dealing with a serious late stage problems. In all truth I would now place my Mom. There is then no access to food, there is some supervision in eating (for instance we often had to bring folks out in table/chairs for meals, and put what is to be eaten in front of them.
This sounds, in all truth, like too much for one person to handle on a 24/7 basis. You have done all you can/should in going to doctors. I wish I had better ideas for you and hope others do.
I would use wet wipes to clean her hands, she isn't just leaving a sticky mess, she is spreading feces in food and throughout the house, that could kill you and then what happens to her?
You should lock up all food and leave snacks for her in her own cupboard.
The truly sad thing is you are unwilling to put her in a facility where her needs can be met and that means you have to be more aware of her behavior and redirect her throughout the day. It sounds like she is kinda wandering around at will and doing whatever she wants. That's like giving a 3 year old free reign in the house and cupboards, destined to be problems continually.
Best of luck!
Your last post was so sad, that apparently no professional would become involved with a bulimic who also has Alz. I do recall from reading Gelsey Kirkland's biography that she also suffered from an eating disorder, not surprising given that ballet dancers for the last decades were very conscious of slimness.
Like for eating disorders, she will get structured meals and structured potty breaks. There won’t be any bathroom locks to hide behind. Just like in Ed programs, alz patients can be redirected toward activities.
Adjusting to being in any kind of treatment facility could and might challenge the sanity of someone w/o an eating disorder.
I think that kind of experience could aggravate her situation, and possibly send her into a more compulsive need to continue whatever it is that's creating her need for body, weight and perhaps image control.
She can’t get help for her bulimia. Eating disorder clinics will not take someone with advanced Alzheimers. I even had one of my cousins who is the director of a nationwide chain of drug rehab centers to call every eating disorder clinic in the country to try to call in favors to get her admitted, but he was totally unsuccessful…they don’t take Alzheimers.
Beyond the bulimia, Alzheimers, low BMI, and weakness, her vitals are good. Electrolytes are fine (she has bloodwork every 3 months). Also last week she had an Endoscopy which found no physical problems that would cause vomiting and they found virtually no damage from the years of vomiting (doctor said that the digestive system is surprisingly resilient) the . I’ve been to many doctors and they say that, while rare, it’s likely the Alzheimer’s caused the Bulimia not vice versa.
I have purchased a garage refrigerator with a lock and store foods that I’m trying to save homage jams and jellies) and food that are potentially dangerous when eaten in quantities, like baking powder (contains aluminum) and tylose powder used in cake decorating. I’m hesitant to lock the pantry because at one point her weight dropped to the mid 60s and it took over a year yo raise it to the mid 90s by allowing her unfettered access to sugar (both her GP and neurologist said to do this).
As long as she still knows me and I’m physically able to handle it, I cannot see putting her in a facility (curse of me being the oldest and the “responsible one”). I did look at the only daycare in the area and it seemed like the seventh circle of hell…I would have my worst enemy stay there.
So, my only option at this point is to hope that she just forgets to throw up.
Your sister's care is beyond you.
You deserve a life.
I'm not clear if your sister is vomiting from too much indulging in foods that upset her stomach, or if she's practicing bulimia by inducing herself to vomit. Either way, there should be medical intervention because if left to continue, there could be more severe problems.
And echoing others here, I think you should consider how to get your sister appropriate care without sinking your own heath and financial situation. Your sister will need increasingly higher levels of care. There must be some way to make a plan for her that isn't you working 24/7 to care for her.