Eating habits

kdame

My mother in law was recently diagnosed with dementia, although she has had symptoms for awhile. We got her out of a bad living situation and have her living in our apartment complex so we can come over and help her with dinner and caring for her dog. She hasn’t progressed to a point where she isn’t able to take care of herself with some things, but we have talked about the future and having to move in together. She is severely underweight and also has had orthorexia behaviors before being diagnosed. Since the onset of her dementia it has made her eating habits even more strict she only wants to eat broth, leafy greens, and doesn’t want to consume more than 500 calories a day. I have tried to accommodate her by buying her whole grain breads and all organic foods. But she will only eat when we actually sit there and watch her eat. I’m not sure how we can get her to eat a more variety of foods since she will eat nothing with fats or carbs, without having to go over there 3 times a day to make her food and make her eat it and lie to her about what is in it which I don’t feel comfortable about. We are both 26 with full time jobs and our budget and hers does not have room for a caregiver to help. I also can’t find any information online about helping someone with dementia who also has an eating disorder. If anyone has advice please let me know, thank you!

SusanB-dil

Hi kdame - welcome to 'here', but sorry for the reason.

Does her doc know about all of this, and how little she is eating? Her doc should evaluate this issue as soon as possible. If she balks about going, you could tell her she needs to be seen for insurance reasons.

Does your spouse have HIPAA accesses? If not, you could still tell her doc the situation, the doc would just not be able to reply back.

Also, other paperwork… does someone have DPOA? This is imperative. And soon, because this is already a poor judgment on her part.

kdame

Hi! Thank you for your response! Her doctor does know and said he was concerned about her weight and that she needs to eat more but she got very combative that if she eats anything more it will worsen her existing heart condition. I do think this needs to be addressed again with her doctor though, my spouse does have HIPAA access so maybe he can reach out to him on the portal too. They have spoken about him getting DPOA for her but no action has taken place. After this I think they do need to start the process as soon as possible!

SusanB-dil

Yes, DPOA ASAP. A CLEC (elder care lawyer) can be a bit pricey, but having to go for guardianship would be much, much worse. You could tell her it is for 'future use', or that she is going with son to get things in order... these lawyers are usually rather good at getting them to sign. This is so very important... Will save lots of headaches going forward.

notequipped

https://alzconnected.org/discussion/comment/280140#Comment_280140

Do call around to different CELA lawyers and do it ASAP. I have heard people that are quoted absolutely wild amounts. I’m happy with the one that we went with but finding her was quite the task.

Another thing to consider in getting this under control is that weight loss can be part of the progression of the disease. I think my Mom eats more than I do but is continuing to lose weight at a rate of just over a pound per month. While it doesn’t sound like much, her BMI is already on the low end. She can’t afford to lose another 6+ pounds in the next 6 months. I just bought heavy cream to sneak in to her protein shakes that she uses as milk for her cereal. My Mom doesn’t eat particularly healthy but has been known to be restrictive and has a bit of a gym obsession. Falls become much more likely with the combination of frailty and Alzheimer’s.

Michele P

https://alzconnected.org/discussion/76860/eating-habits

Welcome. I am in agreement with others that you need to see an Elder Law attorney immediately to get legal documents in order. I understand eating healthy, but 500 calories a day is not enough. As the disease progresses, she will loose a lot of her weight. Is there a nutritionist you could speak to about healthy foods that could be added to her diet that are higher in calories? Ask what foods you could swap for what types of foods she currently eats. Smoothies are good to mask other foods. You might be able to use an Ensure type of product as the base. I would get a plan b in place now if you take over her care with legal documents in place. This will involve putting her on a waitlist in an assisted living/memory care facility with a refundable deposit. At your age, you will not be able to give her full time care as the disease progresses. You will first need to hire in home care and then place her in a facility as the disease worsens. Buy a copy of The 36 Hour Day and read it. It will explain what is coming. This disease breaks you in two. You will eventually will be caring for an infant in an adult body who can not do anything.

sandwichone123

When you meet with an elder law attorney, ask about qualifying for Medicaid. Trying to care for her in your apartment while you are trying to start out in life is not going to go well. She needs much more skilled care than the average dementia patient, and should probably be in a nursing home, not assisted living. Weight loss is also one of the primary considerations for getting someone on hospice. I don't think this is going to be manageable independently for long.

Even if you were able to get the eating/weight stabilized, there is only one trajectory for Alzheimer's, and having a young person give up employment to care for a mother in law is not going to change that. Unfortunately, it will seriously crimp the couple's future, that young person's future, and their ability to cope independently if something were to happen to their spouse or marriage.

I am sorry if I come across roughly, but it pains me to see young people giving up options to support unrealistic hopes.

JulietteBee

As far as dietary modifications, I just had a consult with a nutritionist for my mom who has started eating like a bird and losing weight.

It was recommended that rather than expecting mom to eat 3 meals per day. Plan to give her 6 small meals per day. Mom balked at the idea of eating "so many times in the day." So, an alternate plan was suggested, l lay out snack items that she will eat without consciously recognizing that she is consuming more calories than previous. I now set out a jar stocked with crackers. There is also a bowl with Trail Mix. Not to mention, the fruit bowl is ladened.

To be able to quantify her fluid intake, smoothies are suggested. A morning smoothie could be made with fruits while an evening smoothie could be made with veggies.

I wish you the best as you seek to care for your dear mother-in-law.

MN Chickadee

I would have your partner get the DPOA like yesterday. You may need to fib. Say we are doing ours, the lawyer will take care of yours as well for free. It's for if the unthinkable happens etc. Downplay the need in the immediate sense.

Along that vein you likely need to get comfortable with therapeutic fibbing. It's pretty much the only way to deal with dementia in the middle and later stages. Their brain deteriorates to the point where logic and reason are useless, they simply can't process it and trying to convince them or present facts as you would a normal person does nothing other than make them distrustful of you. Therapeutic fibbing becomes the kindest and safest way to approach things. She needs far more support than you eating with her now and then, she isn't thinking clearly and never will. You will need to find a way to hide calories in things. Smoothies would be a good place to start to hide some whole fat dairy, protein powder, fiber etc. Tell her the groceries you bring are low fat. Move higher calorie items to decoy low fat/light containers so she will believe it. It sounds like the eating disorder stuff started a while ago, and in a younger person with otherwise normal cognition would obviously be handled differently, but the dementia is going to be the driving factor here and dictate what will work. It seems possible a medication change would also help. Many PWD get obsessed with something, often to the point where it gets in the way of their health and safety, and having the doctor tinker with meds and doses can really take the edge off. If she continues this way she will be on hospice before you know it, she will lose weight (and muscle, capacity, mobility, bone density, stamina) really fast if she is eating even 1200 calories a day. The brain also needs calories to function and her dementia will deteriorate along with everything else if she is starving herself. At the end of the day that's what she is doing. She's a vulnerable adult with a dementia diagnosis who is unable to grasp consequences and is therefore starving herself. It's up to those around her to step in.

Honestly I'd be touring/selecting Memory care facilities and nursing homes and getting on wait lists, and having an elder law attorney advise you on getting her on long term Medicaid to pay for it. PWD in independent living situations are usually very short lived, things change quickly. Her judgement around food is probably not the only area where it's compromised. I'd keep a close eye on the dog, as her judgement is clearly compromised. Over or under feeding pets is a common issue with dementia, as well as lacking in other areas of caring for animals. She may do better with much more structure and support that memory care offers. Good luck, I know it's a rotten journey that nobody wants or deserves. Stay in touch.

TomC0917

https://alzconnected.org/discussion/comment/280256#Comment_280256

I'm over a year late in responding. I'm new at caregiving for my DW. She has had some serious gastric issues in the past month, and is now at 127 lbs for a 5'10" woman. This morning I had to help her get off the sofa. She had her gallbladder removed and a ERCP to remove stones from her bile duct in the past 2 weeks.

Getting her to eat to next to impossible. Her Drs only have restrictions of fried or oily foods. There's broiled fish, chicken, hamburgers. Pasta, rice, mashed potatoes. she'll have a couple of mouthfuls and stop. Saying she has stomach pains. In the past 32 days there's been 4 ER visits for GI issues plus the visit for the surgery and ERCP. She's lethargic and sleepy all the times and has issues walking from point A to point B.

I keep grinding away at getting her to eat something, but am at a lost on getting her to do so.

I

H1235

Welcome, since she seem kind of obsessed with the idea that she needs to stay under 500 calories, I wonder if this might be considered ocd. I’m no expert, but I wonder if medicine for anxiety might help. I agree with others. Fibs are almost a necessity. DPOA is incredibly important. Maybe tell her it is for down the road as she gets older. I assume you have tried protein shakes. I can understand wanting to allow her to have her independence for as long as possible, the problem is it’s going to cost you yours. It’s only a matter of time before she needs 24/7 care ( if she is not there already). You said she was in a bad living situation. Could part of the reason her living situation was so bad be due to her dementia and her inability to care for herself. This was the case with my mom. Even in a new clean environment things quickly started going bad again. I wonder if even the small apartment with regular visits from you is still too much for her to manage. What is the situation with her finances. This is often one of the first issues people notice. Poor judgment and vulnerability could cost her. Being the in-law really puts you in a difficult situation. Its hard to know how much to say and when. I will attach a few resources.

https://iona.org/therapeutic-fibs-ok/

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf