How do I help my father with vascular dementia and Type 2 Diabetes control food intake?

I suppose I fall into the category of younger folks here... But I honestly don't see my Dad as a patient, and I have never been told that he is dying so some of this discussion is a little jarring for me, although I certainly appreciate that anecdote in your circumstances and am glad the nurse saw eye to eye with you in the end! I make my dad plenty of delicious food that he does enjoy, I'm not trying to limit his small pleasures but to assist in managing his health so that what good time he has is of the highest quality and the most comfortable for him. He's often nauseous and uncomfortable in addition to his sugars being out of whack. He is most definitely a member of the family but I often feel that I'm not a natural born caregiver and worry I'm not doing the right things by him.

Jeanne, good advice. I totally support your approach! I've done the same thing. Even though Dad is on a dysphagia diet, I do let him have sugar cookies, something he's liked since childhood.

After all, there's not much attraction to pureed food, especially after it's been cooked, shipped and reheated. Yuck.

I think that some younger folks, especially medical personnel, who see our elders as patients rather than family don't realize that at some stage it's appropriate and acceptable to allow deviations from completely healthy lifestyles. After all, emotional gratification and enjoyment can be just as important as eating properly and doing all the right things medically.

Thanks for sharing your insight.

Just a little personal anecdote:

My husband, Coy, was encouraged by doctors to eat what he wanted to. Fortunately Coy liked a lot of healthy food, but lifting all his dietary restrictions was like an end-of-life gift. (Sort of like the Make-A-Wish program.)

In addition to dementia Coy had CHF. His heart clinic ordered a scale for him, hooked up to the clinic via telephone lines. It was useful in letting us adjust things for a few days if his weight went up suddenly (which would indicate water retention.) A nurse monitored Coy's weight and called if she had any concerns.

Once she called and told me that Coy's weight was up 3.6 pounds from yesterday. "Oh yeah," I replied. "That was probably the big pickle and sausage at the German restaurant. I'm watching his diet today and tomorrow a little more closely."

The nurse was horrified. "A pickle? A pickle? Don't you know how much salt is in a pickle? Why would you let him eat it?!" She really sounded mad at my negligence.

"Ma'am," I told her, "Coy is dying from dementia. His geriatrician and neurologist encourage him to eat what he enjoys. I am not watching his salt intake. I like knowing when he is starting to retain water so I can make some temporary adjustments. I'm trying to keep him comfortable and happy, not get him well or to live longer. If that makes us ineligible for this service, you can order the scale to be picked up."

Nurse: "Oh no, no. We want you in the program. Watching for sudden weight gains will keep him more comfortable. I understand your approach and I thank you for explaining it."

Thank you Digusted and Llama. It's certainly something I have considered. At this time he is not considered incompetent so taking control of his finances could be tricky but I will be consulting a family law specialist for advice in that area.

disgustedtoo: I already made that suggestion to the OP. Thank you for backing it up, though. Maybe the OP will consider that option if it's seen twice.

Since he lives in your home, is there any way to control his access to money and/or credit cards? If you have DPOA, you could cancel or freeze his credit card(s) and limit how much cash he has on hand - that way he cannot order food from outside. Once that can be eliminated, allow maybe once/week pizza or chinese food as a treat?

I'm not sure if you have considered Palliative care. I decided on that with my LO, as it was what she would have wanted. As her HCPOA, I went for comfort care. So, we do all we can to keep her as comfortable as possible. Her diabetes treatment is to keep her comfortable and not to extend her life. If blood sugars run too high, they can suffer from thrush, yeast infections, neuropathy, blindness, etc. So, there are real practical reasons to keep the blood sugars down to reasonable levels. Very tight control is not the goal with us, as we understand that her dementia is terminal.

Hi Everyone, I'm sorry that I posted and "ran" - it's been a busy few days. I really appreciate the input from everyone - and I don't feel that it's "judgemental" really - this is a relatively new situation for me and not one that I thought I would be dealing with for a very long time (I'm 33 and my dad is 65). It is very hard for me to digest that he may not live much longer, and my efforts to help with diet etc. are in aid of him living a longer and more comfortable life if possible. A few things I didn't detail - he has bouts of diarrhea and nausea, which I suspect are either brought on or not helped by his dietary choices. I'm not harsh with him - it's not in my nature or my interest to be that way - he is my father and I respect him as an adult, but I do want to help as he lives in my home and eats the food I prepare. I make lots of diabetic-approved and heart healthy treats - chocolates, "sweets", healthy copy-cats of fast food items, but I have shared with him my worry about the take-out food (gently, I promise), and that I want him to feel good for as long as possible. I work all day, as does my husband, and I worry about him very much, that is where my question came from. I will try to take all the advice I've been given, to stress less about it and allow him to have what he likes and make the years he has with us happy and unrestricted - I just hoped that maybe I could make them healthier too. Thanks again everyone.

This reminds me of a story about my Grandfather. Mom had him on a strict diet and he ate most meals with us. He lived alone next door to my parents so it was easy to walk across the lawn. Grandpa love to walk and loved kids, he'd spend hours at the local little league park watching all the games. Nearby was a Stewarts, one day my cousin & his wife went in for milk and saw Grandpa sitting in a booth so they joined him. The waitress brought him his lunch, a hot dog. Grandpa leaned forward and whispered "Don't tell your Aunt Ellen about this". Hot dogs were a big no no on his salt restricted diet. Yes Pat told my mother and we all had a little laugh, Grandpa thought he got away with it. It was a small town and there is not much that you can do with someone noticing. Mom figured as long as it was not an everyday event she'd let him have his little secret. He lived to 87 and was in his own house until the last 4 months.

Living longer is not necessarily a great goal for people who have dementia. Living better with whatever time they have left was my goal for my demented husband and mother.

I have the same problem with my dad! It's very sad. I think what some people who responded aren't addressing is that he has dementia. I think if they had round the clock caregivers they could monitor what he eats much better. I think this will promote a longer life for him. Everyone else, don't be so judgemental because she loves him and wants him to live longer!

Who controls his cash, debit card and credit cards, e.g. the way he pays for these food deliveries and take out meals? You could take that option away. One way to control it.

Sarah,
I think you have some good suggestions here. You are wonderful to care so much for your father and his health. But I whole completely agree with those who say not to stress about this.
I guess my view is this, if you had his health problems and were constantly made to feel as if you were doing something wrong by what you , as an adult chose to eat, how would you feel? Even with early-ish stage of dementia, he may be forgetting the rules, and the reasons behind them, or he may not care. That is his right. I say make him the meals that you want to , and do not worry about what he eats on his own. If it isn't causing him pain and assuming he isn't reading at 400+ on a regular basis, I'd say let it be.
When people start losing control over their lives as happens too often as we age, all too often the only thing we have left to control is what and when we chose to eat. Let him have it his way for as long as he is able.
I wish you well.
Best,
Margaret

If he happens to live with you, you can just lock up everything he's not supposed to have and just control his portions by not letting him get his own food at mealtime. Just serve him yourself and don't let him serve himself. That way, you know what's going in his mouth and how much he's eating. When I was a ward of the state after my rescue from my abusive parents at age 13, we had some people who weren't supposed to have certain things and food was rationed. That way, caregivers always knew what everyone was eating because there was a list of things for each person to have when they were on special diets. Yes, diabetics must be careful no matter what type they have. Another thing to be careful of is not letting diabetics go to long without eating something. I know one right now who admitted he went to long without eating. He could've gone into a diabetic coma and no one would've known. It was during the time I wasn't around for a while and he happens to live alone. Had he gone into a diabetic coma, his poor dog would not have been able to fend for himself. Yes, sometimes you have certain types of situations where food must be rationed but be very careful not to let the person go to long without something to eat. You may check to see if his sugar tends to get too low. I would have it checked during the times of his binging, you never know that it might not be getting too low and that can also cause just as much trouble as when the sugar is too high. Oddly enough, my friend also happens to be overweight and needs to drop some weight which would dramatically improve his condition. Sadly though, no one is taking over his diet to help him in this area and there's not much anyone can do right now unless he loses capacity. There are some cases you'll just have to let the cards fall where they will but other cases someone must step in and intervene to save someone else's life.

I would take the patient to a dietitian since they specialize in diets and proper nutrition. They can help you find a diet that's right for you no matter your condition, especially if you're overweight or even obese. No matter your condition, a dietitian is definitely the first place I would look in order to correct whatever condition is correctable through diet because many if not most conditions are correctable through proper diet. Remember in the days of our forefathers when disease was less common than it is now? That's because they farmed and grew their own food. They had gardens and even huge plantations back then. I even heard a story somewhere where a pregnant woman would go out with the other workers to work the fields and come back with a baby that night, that's how healthy they were. If only we could follow the diets and lifestyles of our forefathers, we'd be more healthy than we are sick. Such was true when I was a ward of the state at one specific campus. They made sure we ate right and we were well cared for even if people weren't exactly fair towards us but at least we survived and we were more healthy than we were sick. That's because we had proper diets and lots of exercise

I agree with those who said let him eat what he wants. My late husband had vascular dementia (although not diabetes), diagnosed about 5 years before he had the stroke that killed him....and he ate a fairly healthy diet and had lost weight. Your father probably isn't going to live much longer than that no matter what he eats, so why not let him enjoy life as much as he can?

I found it difficult to reason with my dad who had dementia, but being gentle often helped more. He was diabetic and we tried the banting diet, which works well for diabetics, but he too loved his sweets, which we occasionally allowed while monitoring his sugar levels. He ate very little though. There is a very good Diabetic Forum you can look up and they have great recipes, which your dad will enjoy.

does your dad take any kind of drugs for dementia or depression. Most of them include weight gain as a side effect. Plus I think they lose their self control which makes it worse.

SarahK, there are some good points made above. (What is your dad's A1C?) Is it okay or really high? If it's not really high, I would try to work with what he's doing. If it's really out of control, then, I might encourage him to do things differently, keeping in mind that you may not be able to get him to eat what you think he should be eating.

As a Type I diabetic, I believe that I do have a unique perspective on managing diabetes. I'm no expert, but, I do manage mine pretty well. It has taken me years though and it is a full time job. It requires a lot of planning, checking, counting, and discipline. If your dad is not on board, I wouldn't get overly stressed about it. You can't force it. I would focus on what you can help with.

First, I would get him to a good Endocrinologist. Preferably, one that focuses on diabetes. If you can find a division of a teaching hospital, that's good. I go to UNC Endocrine. Top notch. The Endocrinologist can evaluate your dad, provide options that he can handle and look to the future. Once, his dementia progresses, it'll be easier, because his food and meds will be administered to him by others.

Second, I would ask the doctor about finding a way to cover the carbs your dad eats, since, you can't prevent him from eating them. There are pills that can be taken along with some insulins. The key is finding the right combination. Having too low blood sugar can be as dangerous as too high.

Does your dad have any interest in checking his blood sugar throughout the day? Most people don't. If he will do it, it would help figure out what his needs are.

I wear a Continuance Glucose Monitor, (you wear a sensor that sticks under the skin on your belly. You also have a receiver that shows your blood sugar level. A device (you wear on your belt or may use your phone) for a senior with early stage dementia? I'm not sure how that would work. It requires a lot of work, education, and supervision. I can't see a senior with early dementia managing it. Not very practical. You can discuss it with his doctor and a Certified Diabetes Educator. A pump also requires a lot of work, management and care. And it runs the risk of too much insulin. I can't imagine they would prescribe that for a person with dementia.

I hope you can get the answers you need to help your dad. Once, my LO's vascular dementia progressed, she did fine with her pills being given to her in the morning and then a regular healthy diet the rest of the day. She isn't restricted that much, but, gets treats occasionally. Her meals and snacks are provided to her by the MC staff. Her A1C has maintained at a very good number for several years. This keeps her more comfortable. That is my goal now.  

You can't change him honey - you will drive yourself insane if you continue trying.

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

You'll only make yourself sick trying to change his habits. Let him know you're there if he want assistance but he's a big boy and he will do what he wants and eat what he wants.

The only option you have is to make sure his doctor(s) advise him what lies ahead if he doesn't change his habits. But "sugar consumption" is an addiction for a lot of people.

All you can do is your best. It sounds like you are already doing that.

I think you need to look at the entire picture here. Your dad has vascular dementia. Studies show the average life expectancy after diagnosis with this condition is about 4 years. Now that is an average, meaning some people die sooner than that, and others live much longer. But it is fairly unlikely that your father will live to be 80 no matter how good his diet is and how well managed his blood glucose is.

That blunt truth helped me to establish my caregiving goal for my husband, who had Lewy Body Dementia. My goal became to help him have the best quality of life he could under the circumstances.

That your poor dad thinks he has to hide his fast-food purchases from you is sad. I don't think that contributes to his quality of life in these last few years, do you? I know that your intentions are absolutely sterling. I'm just not sure how realistic they are.

Let an endocrinologist keep making adjustments to try to manage the blood sugars a little better, without being depressingly restrictive in the diet. And do consider an insulin pump!

My husband had followed a "heart healthy" diet all of his adult life. Once he was diagnosed with dementia both his neurologist and his wonderful geriatrician said let him eat whatever he wants now. That relieved stress from both of us.

Please talk to an endocrinologist and not a GP. I recommend a diabetes care center. An insulin pump is a great option. His basal insulin doses will run in the background. Only when he does eat, an additional insulin bolus will be made with the pump, based on how many grams of carbohydrates he consumed. There is no food avoidance or "diabetic diet" anymore. A Continuous Glucose Monitor works with the pump. Please Google Medtronic 670G. Wearing a pump is not a punishment for "bad" patients or only for people dying. It is an external pancreas so to speak. 

Sarah, you could first try to prepare all meals in advance (lot of work, I know), and see if he'll eat them.

If not, your intentions are admirable, but your father is not cooperating. You can't change his behavior; he has to want to do that by himself.

But you might try some tough love. Print out some articles on the short and long term side effects of uncontrolled and/or advanced diabetes, including having to wear an insulin or facing amputation of a deceased limb. That might scare him into compliance.

It seems cruel, but he has to realize the chances he's taking, and only he can change his attitude.



Good luck.