Going a little nutty here...

Started by

My 84-year-old mom moved in with me 2 weeks after my dad passed nearly three years ago. She has COPD, severe arthritis and scoliosis, and had early dementia when she first moved in, but is now in mid-stage dementia. She thinks she is fine and that she is capable, but she is not. She has no idea she doesn't eat or drink much. I get half a bowl of oatmeal and 2 Ensures down her each day with tremendous effort because she wants neither. It takes much goading and diligence (nagging) on my part just to get this into her. She gets agitated and I get stressed out trying. I have given up trying to get her to shower or get cleaned up. I pick my battles, but eating and drinking is one I cannot relinquish. I know she does not want to be hospitalized, which is why I try so hard to keep her strong enough she doesn't fall, or succumb to dehydration. I get very little respite from my caregiving duties. I teach a couple of nights per-week and that is really the only time I get to be away. I know we are all going through similar situations, but I am hoping for some advice other than what I get from family members who say things like, "Don't let it get to you" and "She can't help it." I know all of this, but the daily struggle with a person who has always been the most stubborn person I know, is making me frustrated and crazy. Help!?

9 Comments

Dear Gina,

I can sympathize and empathize with what you are going through. You are an amazing daughter to care for your mom. Its only natural and normal to feel overwhelmed.

I had similar challenges with my dad. In hindsight I was getting angrier and angrier with him about his refusal to take meds, eat, drink or even shower. I didn't know how to handle it. My father was dying of heart failure. He never mentioned the pain to me but I could see he was not the same. And instead of questioning this change, I just struggled along every day.

I would try and get your mom evaluated again by the doctor. Review her meds. Her medical condition. Her mental condition. Look for respite care. Maybe even consider assisted living or a nursing home. Talk to a social worker, therapist, counsellor or join a support group.

I know its not easy. Thinking of you.
I don't know what kind of support you're getting, but by all means, join a support group, and spend lots of time on here. What you're doing is more than anyone can bear.
Oatmeal is good...Have you tried baked custard? or jello? or mashed potatoes?or even a meatloaf?These were a few of the only foods I could get down my Mom.It's good you are getting the Ensures down her too.She is lucky to have you and your good care.
I understand what you're going through. I'm solo in caring for my mother. I have no other family in the country to help with me. I also get tired of the hearing "Don't let it get to you" and "She can't help it" but it's actually me telling myself this. :-) I stopped talking to my friends years ago because they were being too judgemental and not supportive of my decision to care for my mother. I just didn't want to deal with their crap - I didn't and still don't have time for it.

How your mother is behaving is exactly how my mother is behaving. This is why I've decided recently, the next time my mother develops a fever or a UTI, I'm putting her on hospice and letting nature take it's course. She's a DNR. I'm so not advocating you do this. I'm just letting you know my perspective based on my mother's overall quality of life. It's not good - at all. However, her recent set of labs look fantastic and she could easily live another ten years but the labs don't correlate to her every day quality of life. She's truly suffering. It's not pretty.

You said you know your mother doesn't want to be hospitalized. So she just wants comfort care, right? You're basically providing hospice care without offically going on hospice, is this right? If she's not eating much, then do you think this is her way of letting things take it's natural course? I know you care deeply for her but there's only so much you can do to get her to eat.

Make sure she's not constipated. My mother refuses to eat or eats very little when she's plugged up. Also make sure she doesn't have a UTI.

Give her some ice cream, or Lactaid ice cream.
Delegate.

Hire a caregiver for one hour every evening specifically to help your mother eat her dinner. Make it a protected meal time, like they have in hospitals and nursing homes, so that there is nothing else going on. Prepare her supper beautifully, with her favourite things on a nicely-laid tray, and something delicious for dessert. Explain to the aide how your mother used to eat - vegetables first, best bits last, whatever her habits were. Then stay out of the room.

All you have to do then is learn not tear your hair out on the occasions when your mother still won't eat.

Um. How do you see things developing from here? Of course your mother doesn't want to be hospitalised. But I think it's perhaps more relevant that you, quite naturally, don't want her to decline and pass away. And yet, and yet...

She is in her mid-eighties, with cantering if not galloping dementia, COPD and other painful conditions. May I ask gently if you have looked ahead and thought through a plan for her care going forward?
Thank you all for your kind words of understanding and advice. Like all of you I try to keep her comfortable, and I am hoping to keep her home until the end, but only if she does not become bedridden and I am still able to care for her. She too has a DNR, and she seems to plug along. The COPD will likely be what does her in, and I know that is an ugly way to go. Doc says she's doing fine, and remarkably she is not losing weight. Getting her to eat no matter what the arrangement is impossible. She simply refuses. I cannot tell you how many meals, desserts, favorite items, have gone down the garbage disposal. Again, I thank you all for your support.
HELP DEALING WITH YOUR MOTHER:
Sometimes one with Dementia will respond to an authority figure while they will not to their caregiver. Is there an authority in your mother's life to whom she might respond? Her doctor should be able to help you with some of your problems, unless they have no training or experience with Dementia.

REFUSAL TO EAT OR DRINK:
a) Try to determine whether she is not eating or drinking is a result of her stubbornness, in which case you treat her like your child (which in reality she is now -- you are the mother, she is your child) and try an incentive of something she would really enjoy doing if she would do what you are trying to get her to do.

b) Or, is this a result of her type or stage of Dementia in which her brain is telling her she is already full or not thirsty, in which case you cannot expect to reason with her since she is not a logical thinker. Perhaps ask if there is a Dementia medication your doctor could prescribe for her. We have had several care receivers with this same Dementia problem over which they have no control. The person either ate nothing and lost weight or didn't know they had already eaten and would eat continually and gain weight.

REFUSING TO BATHE:
We have care receivers in our support group who have refused to bathe. Perhaps buy her a special good smelling fragrant soap or bath gel and something new to wear in her favorite color -- but to wear only after the first time she bathes.

PICKING YOUR BATTLES:
You are correct to "pick your battles".

YOUR STRESS LEVEL:
You are not alone! All care givers (including I) have high stress levels that need to be reduced. Time away for a few hours or even a 20 minute walk outside would help you. Can you get help from your relatives or friends? If relatives live in town they should give you at least a few hours, if not a day or evening, off a every week. You need more than teaching in the evening. If they live out of town or don't want to stay with your mother, ask them to pay for an adult sitter to stay with your mother for a few hours every week for respite for you.

I do not want to frighten you but your relatives need to understand that you must control that stress because it will negatively affect your health. You must stay healthy to care for your mother. They may be responsible for taking care of her if anything happens to you. A surprising statistic is that an exceedingly high percentage of care givers end up ill or die before their care receivers. (That is the good thing about CarePartners -- they look out for care givers as well as care receivers and include any family member to attend appointments which will help them understand what you are dealing with...) It is fairly common that care givers have family and/or friends who just do not "get it" because they have not walked in our shoes. No experience, no understanding.

God Bless and "hang in there" like the rest of us care givers!
My husband did not like Boost or Ensure either (can you blame them?) so I served a lot of milkshakes I made in the blender. A scoop of ice cream, a little milk, and either a can of Boost OR an envelope of Carnation instant breakfast. Keep it all vanilla and throw in some strawberries or peaches. Use chocolate ice cream and/or chocolate Boost and add a big tablespoon of peanut butter and half a banana.

He also liked Popsicles. Not much nutrition, but some calories and hydration.

Sometimes he'd drink V-8.

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support