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?
Also, an insight I’ve gleaned from this forum is that most doctors are clueless about caregiving. Your sister’s doctors will be happy to let you continue caregiving and cleaning up feces and vomit 24/7 all the way to an early grave. You have to advocate for yourself — no one else will.
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!!
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.
Your sister's care is beyond you.
You deserve a life.
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!
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.
What sort of doctors have you consulted?
You and she urgently need a break.
How long has she lived with you?
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.
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