Dementia and nutrition

Posted by tipsytoad @tipsytoad, Dec 9, 2019

Hi, my mother has vascular dementia and we’re running into some real difficulties getting her to eat. She is still living independently but recently suffered a TIA and a broken ankle so she has home care for several hours a day. She has always been one to cook and eat big family dinners but in recent months it’s as though she thinks food is the enemy. My siblings and I have filled her freezer and cupboards with nutritious food and meals that we know she loves, but she is refusing to eat anything other than chocolate and bread. Her home care workers can’t convince her to eat. She looks like she is starving to death, and we’re worried that when she gets her cast off her foot and is able to get around on her own again she won’t have the strength to prevent another fall. She seems to be convinced that if she doesn’t eat anything she will attract male suitors with her svelte figure. She has always been somewhat vain but never like this - it’s gotten out of hand in recent months. So I’m wondering if anyone might have useful techniques for convincing her to eat nourishing food. We’re afraid of what’s going to transpire if she doesn’t put some weight on her very skeletal figure soon.

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I'm sorry to hear that you are going through this. We know what it's like as my husband's mother (who lives with us) has a similar condition. We have been told that this is quite common with these conditions. With dementia involved, the logic isn't necessary firing on all cylinders the way we would like. During her last big episode, my mother-in-law refused to eat for over two weeks, then started in rehab and stopped again for several days when she transitioned home.

My first thought is that getting her to eat anything is better than nothing, so if all she will eat is bread and chocolate, at least she is getting calories that way. For now, you may want to focus on just getting something into her to keep her going until you can work on nutrition. If she will do them, get the Ensure or similar nutrition drinks and tell her that they are malts or shakes if you need to. Would she eat if it was more of a social situation? Maybe the family members could take turns eating with her. (This did not work with my MIL but might be worth considering because maybe your mom is different. Some people simply hate to eat alone).

Also, I'm sure that there are doctors involved given the other issues you mention, but if not, it would be a good idea to ask them for help. You should ask if they have suggestions, or perhaps they can refer you to occupational therapy or a dietician that works with geriatrics to see if they have suggestions. (My MIL refused to eat for us but when she was in memory care rehab they were very successful in getting her to eat. We're still not sure what voodoo magic they used but we were grateful that it worked).

The final option is a bit heavy-handed but was suggested to me by an in-home nurse if we ran out of other options. They periodically have patients who refuse to eat, so they take them seriously and ask if they want to bring in hospice. Once the elder starts to see that this is getting serious and could mean planning for the end of life, they decide to start eating again. It's not something I would want to do (and thankfully we did not have to go there), but they have had to use this option a few times and it can work in the right situation.

Hugs to you and kudos to you and your family for helping make sure she has the option to eat healthy. Hope these suggestions are helpful and that you are able to get this resolved so your mom can be healthy and happy.

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@coloradogirl

I'm sorry to hear that you are going through this. We know what it's like as my husband's mother (who lives with us) has a similar condition. We have been told that this is quite common with these conditions. With dementia involved, the logic isn't necessary firing on all cylinders the way we would like. During her last big episode, my mother-in-law refused to eat for over two weeks, then started in rehab and stopped again for several days when she transitioned home.

My first thought is that getting her to eat anything is better than nothing, so if all she will eat is bread and chocolate, at least she is getting calories that way. For now, you may want to focus on just getting something into her to keep her going until you can work on nutrition. If she will do them, get the Ensure or similar nutrition drinks and tell her that they are malts or shakes if you need to. Would she eat if it was more of a social situation? Maybe the family members could take turns eating with her. (This did not work with my MIL but might be worth considering because maybe your mom is different. Some people simply hate to eat alone).

Also, I'm sure that there are doctors involved given the other issues you mention, but if not, it would be a good idea to ask them for help. You should ask if they have suggestions, or perhaps they can refer you to occupational therapy or a dietician that works with geriatrics to see if they have suggestions. (My MIL refused to eat for us but when she was in memory care rehab they were very successful in getting her to eat. We're still not sure what voodoo magic they used but we were grateful that it worked).

The final option is a bit heavy-handed but was suggested to me by an in-home nurse if we ran out of other options. They periodically have patients who refuse to eat, so they take them seriously and ask if they want to bring in hospice. Once the elder starts to see that this is getting serious and could mean planning for the end of life, they decide to start eating again. It's not something I would want to do (and thankfully we did not have to go there), but they have had to use this option a few times and it can work in the right situation.

Hugs to you and kudos to you and your family for helping make sure she has the option to eat healthy. Hope these suggestions are helpful and that you are able to get this resolved so your mom can be healthy and happy.

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Thank you for those suggestions. She does have several others involved (doctors, home care workers, etc.) but so far nobody has been able to convince her to eat. The only way we can get her to eat at all (and we hate to do it) is to tell her she’ll have to go into a nursing home if she won’t follow doctors’ orders to eat, take her meds (that’s another battle), etc. Unfortunately it doesn’t seem to matter if we eat with her or not. She’s also refusing to bathe or shower because she has a little bit of purple dye in her hair and she’s afraid it will wash out, and then “all the men won’t be after me anymore”. We’ve offered to re-dye it for her but she’s not taking any chances. We’ve been lucky to find work arounds so far for a lot of the problems she’s facing, but these ones are definitely throwing us for a loop. We’re happy that she is eating something, but even with the high-calorie items she chooses she’s barely eating more than a few bites so she’s definitely not getting enough to maintain her weight, let alone put some back on, We’ll keep trying, though. What a challenge!

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@tipsytoad

Thank you for those suggestions. She does have several others involved (doctors, home care workers, etc.) but so far nobody has been able to convince her to eat. The only way we can get her to eat at all (and we hate to do it) is to tell her she’ll have to go into a nursing home if she won’t follow doctors’ orders to eat, take her meds (that’s another battle), etc. Unfortunately it doesn’t seem to matter if we eat with her or not. She’s also refusing to bathe or shower because she has a little bit of purple dye in her hair and she’s afraid it will wash out, and then “all the men won’t be after me anymore”. We’ve offered to re-dye it for her but she’s not taking any chances. We’ve been lucky to find work arounds so far for a lot of the problems she’s facing, but these ones are definitely throwing us for a loop. We’re happy that she is eating something, but even with the high-calorie items she chooses she’s barely eating more than a few bites so she’s definitely not getting enough to maintain her weight, let alone put some back on, We’ll keep trying, though. What a challenge!

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For some reason this topic popped into my digest even though I'm not normally on this group. Brings back memories as we have dealt with this issue on our family several times with dementia and stroke-induced memory issues.
First order of business should be a swallowing (and chewing) study, probably by an occupational therapist - we learned there is often an issue with one or both that make a person fearful of choking. The same issues could be causing the med resistance. They will also evaluate her meds to see if one or more are suppressing her appetite or causing her taste buds to change, though the dementia itself can cause that too I believe.
As for the showering issue, also a common one, have you offered her an old-fashioned shower cap to protect her hair.
Your mother is very lucky to have a caring family supporting her. Good luck, the journey you are on is a tough one. I am thankful you have siblings with you - take care of yourselves.

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@sueinmn

For some reason this topic popped into my digest even though I'm not normally on this group. Brings back memories as we have dealt with this issue on our family several times with dementia and stroke-induced memory issues.
First order of business should be a swallowing (and chewing) study, probably by an occupational therapist - we learned there is often an issue with one or both that make a person fearful of choking. The same issues could be causing the med resistance. They will also evaluate her meds to see if one or more are suppressing her appetite or causing her taste buds to change, though the dementia itself can cause that too I believe.
As for the showering issue, also a common one, have you offered her an old-fashioned shower cap to protect her hair.
Your mother is very lucky to have a caring family supporting her. Good luck, the journey you are on is a tough one. I am thankful you have siblings with you - take care of yourselves.

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Thanks for those suggestions. While I don’t think swallowing and chewing are an issue it’s certainly worth looking into, I’ll mention it to her GP. The shower cap would work, but she still needs to wash her hair once in a while. She actually has a hand-held shower head in her shower, and a built-in seat so she should be able to wash no problem without getting her hair wet but she won’t even do that. She does take her pills most of the time without a fight, but the main problem is getting her to take the medication she’s been prescribed to prevent constipation- it mixes with water so she can drink it. She suffers from some mild incontinence and that’s also contributing to her unwillingness to eat or drink. Although she has pads for the incontinence issues she still worries constantly about making it to the bathroom on time. The vanity combined with the insecurities about what her body is doing are contributing to some pretty irrational reasoning, which I guess is par for the course with this disease, but we don’t want to see her fail because of nutrition and hygiene when we are perfectly capable of helping her with those issues. ☹️ I appreciate all the suggestions, this is a difficult disease to navigate with no experience.

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@tipsytoad

Thanks for those suggestions. While I don’t think swallowing and chewing are an issue it’s certainly worth looking into, I’ll mention it to her GP. The shower cap would work, but she still needs to wash her hair once in a while. She actually has a hand-held shower head in her shower, and a built-in seat so she should be able to wash no problem without getting her hair wet but she won’t even do that. She does take her pills most of the time without a fight, but the main problem is getting her to take the medication she’s been prescribed to prevent constipation- it mixes with water so she can drink it. She suffers from some mild incontinence and that’s also contributing to her unwillingness to eat or drink. Although she has pads for the incontinence issues she still worries constantly about making it to the bathroom on time. The vanity combined with the insecurities about what her body is doing are contributing to some pretty irrational reasoning, which I guess is par for the course with this disease, but we don’t want to see her fail because of nutrition and hygiene when we are perfectly capable of helping her with those issues. ☹️ I appreciate all the suggestions, this is a difficult disease to navigate with no experience.

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The challenge with dementia is that irrational reasoning is par for the course most of the time, and trying to make logic out of it can drive you crazy.

Here are a couple more ideas that might help.
- If she won't take the stool softener because it's a liquid, ask the doctor to prescribe one that's a pill.
- On the hair washing, you could try a coloring conditioner and tell her that it's something new that will help "refresh" her color and keep it nice and purple. I used the Keracolor brand color + conditioner which I bought on Ulta.com. Then it would be a positive thing but also get her to wash her hair when you want her to.
- @IndianaScott might have other suggestions on the bathing because I think I recall him posting on this topic in a separate thread.

As for threatening her with a nursing home, I know you don't like to do it but I think it's reasonable as long as it's done kindly. It's not really a threat; the truth is that if she doesn't eat and take her medications, she will eventually end up sick enough that you can't care for her and she will have to go into a nursing home. I would definitely try other enticements first if they work, but they don't always.

Hang in there and hope this improves for you soon. We are here for you.

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Good morning @tipsytoad I am sorry you’re going thru all this with your mother. But I’m glad you’ve found Connect. We’re an online community that tries to help each other by sharing experiences, information, and tips, but we’re not doctors. Does your mom have any lucid periods when you could discuss her situation? Do you feel that she’s safe at home? I’m going to ask @jakedduck1 to join this conversation because he took care of his mother for years and had some of the same issues.
Two things you can try: hair washing—they make a dry shampoo that can be sprinkled in and brushed out. Check with some medical supply stores. Or, in a pinch, baby powder does just fine. (small amounts, though); eating—if your mom likes ice cream, you can buy Ensure or Boost and freeze it. Both are great in protein.
There is another discussion that should help you (but I have to find it!)

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This discussion might be of help to you, also. Several members have discussed the same issues as you. https://connect.mayoclinic.org/discussion/hygiene-issues/

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Thanks again, everyone. Becky, today she ate one weiner but claimed she hates the muffins, tea buns, chocolate, soups, casseroles and other things that she’s sporadically been claiming she enjoys. That’s part of this challenge, what she’ll eat from one day to the next is extremely variable but NEVER healthy. The dry shampoo is a great idea, definitely something to look into. As for lucidity, she is somewhat lucid most of the time, but honestly her sense of reason and logic has never been strong, and it’s only getting worse with time. I believe there have always been other undiagnosed mental health concerns that are now being compounded by the dementia. My aunt is a psychologist and she’s suggested that Mom seems to have exhibited symptoms of bipolar disorder and dependent personality disorder. Mom had her home care worker help her set up her Christmas decorations yesterday and when she went to plug them in, instead of plugging them into an electrical outlet she plugged the two ends of the extension cord together and then couldn’t figure out why they wouldn’t work. I personally don’t feel that she should be living on her own, but we don’t have many other options. None of us has a house that is suitable for her mobility needs, and I am helping long distance with trips to her city so taking her away from her medical support system is not an option. The province seems to think that her dementia is not far enough along to require moving her to a nursing home, and we even had to fight tooth and nail for home care. So frustrating!

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@becsbuddy

This discussion might be of help to you, also. Several members have discussed the same issues as you. https://connect.mayoclinic.org/discussion/hygiene-issues/

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Wonder if you could help in this discussion @virginianaeve , @providence1960 and @kmkm ? You were a big help earlier! Thanks

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Mayo GI doctor prescribed "Mirtazapine 15 mg" for me...it was and is to make me want to eat..It and the mind have to realize that eating is essential for life.. Counseling helps with some physical exercise... even just walking in a pleasent area .. I enjoy feeding the birds and wildlife...I make the connection..

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