How to deal with denial

Jenny B

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Hi all!

My husband has been struggling with swallowing problems for almost a year. Within the last few months, he has almost entirely lost the ability to speak (he can make noises but they no longer sound like words), and can no longer chew. He has atrophy and tremor of the tongue, hyperactive reflexes, and widespread fasciculations. He is 6'4" and has went from 210 lbs. to 162 lbs. in about 6 months. He has weakness in both arms and hands. He is getting his only nutrition from Boost shakes (4-5 bottles per day) and pudding. He has been in denial about the progression of symptoms, and seems to be experiencing some dementia as well. He was recently seen by a neurologist for the first time (after I talked to his PCP and we begged my husband to go get checked out) and the neurologist felt that it looked like motor neuron disease and ordered blood work, EMG and MRI of the brain with contrast. The blood work came back normal - no autoimmune disorders. On the EMG report, the doctor's diagnosis was probable widespread motor neuronopathy. His MRI is next week and his follow-up appointment with the neurologist to review the test results is at the end of the month.

I'm concerned he won't make it that long. He lost 10 pounds in the last week. He refuses to see his PCP in the meantime - I worry he is dehydrated because he has lost the ability to swallow water. He can get soda down but will only take some sips here and there. He chokes on everything, although he can get most of his Boost down. He won't see his PCP or get help with his symptoms because he thinks all of his problems are from seasonal allergies. As a family, we are respecting his wishes (whether they are conscious or subconscious) to call these allergy problems. But, I'm worried I'm watching him die and it just feels crazy to sit here and do nothing.

Has anyone had any experience with anything like this? I'd love any feedback or support and really appreciate these forums. This is my first time posting, but I have learned a lot from reading from others' experiences. Thank you so much. :)
 

affected

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I'm so sorry for what is going on, how distressing this must be!
Has his behaviour changed at all? I ask that as you mention dementia, and there is a particular type of dementia that often goes with ALS, but it is quite different to AD.
I'm not sure what else you can do if he does not wish to pursue anything, it is a very hard position to be in.
 

lgelb

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I'm very sorry. For those not aware, "motor neuronopathy" is the same as "motor neuron disease."

Being dehydrated could cause or worsen any confusion, so it's a chicken/egg thing, too. I would certainly try to increase the Boost and puddings if he does best with those. If smoothies are more alluring than Boost, I would use a powerful blender, try a super wide straw if he does better with that, and you might be able to use any combination of oat milk (Oatly works well), raw eggs, juices, puddings, ice cream, regular cream and such, depending on his tolerance for real vs. fake dairy.

Is there a friend, family member, pastor, work colleague, someone he might listen to as regards a feeding tube procedure, even if you let him keep the allergy theory? It could come down to "whatever the cause, you are losing too much weight to stay alive, so a tube is the only way to keep going" and then point to whatever goals he might have for the rest of life.

Best,
Laurie
 

lisa g

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Jenny B,
This must be so distressing to watch your husband go through this. I myself have an issue swallowing. I recently had a feeding tube placed and will tell you it was the best decision I made. If that isn't an option you may want to consider a liquid form of food that has more nutritional value than Boost. I use Kate Farm's that has 455 calories per carton and 20 grams of protein. I take 4 cartons a day and have gained 8lbs. If you have your physician write a prescription it should be covered under your insurance.

I hope your able to convince him to see his PCP or a neurological specialist so he can get the help he needs.
 

Mary2

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I am so sorry you and your husband are going through this situation. I was wondering if your husband's urine output is decreasing or becoming quite concentrated. This would be a further indication of dehydration that needs to be treated.
 

rmt

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I'm so sorry you are having to go through this. My husband refused to get a feeding tube until it was absolutely necessary. He was so stubborn. Once he got it (May 2021), he gained back some weight but I think he lost a lot of muscle and he never got that back. He really was at the point where it was either a feeding tube or death, so I'm glad he finally got the feeding tube. It was incredibly awful watching him starve to death or die of dehydration. Or possibly choke to death trying to eat/drink. I think I have PTSD from all the choking and coughing.

He doesn't want healthier formula or blended food, so he uses the formula the VA provides and supplements that with Boost Very High Calorie. It has 530 calories per 8 ounces. If you aren't already using that one, you can get it on Amazon to get extra calories into your PALS.
 

affected

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My husband also waited until he was emaciated and quite dehydrated and then suddenly there was this mad rush to get the feeding tube done. He never truly accepted it in some ways, and refused feeds quite often and though he was hydrated from that point, he continued to slowly lose weight until he was less than 50kg at the end.

I agree with rmt, I was so stressed at meal times. Not so much for fear of him choking, as unless a PALS is eating food that really needs chewing, they don't choke, but they do aspirate. A non-verbal PALS in hospital is another stress.

However, saying this, it was his choice and I gave him all the information I could, encourage health professionals to tell hims straight, but then advocated for him to make his decisions. There was no guarantee he would live longer if we did things differently, and his quality of life with FTD would not have been better if I'd taken his right to choose from him.

It's a very difficult and fine line we often walk as a CALS.
 

Firefighter58

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I think a feeding tube is a must, I have had one for about four years ,the advantages are endless, the big one is he can't taste what you put down the tube. I also take all my meds and vitamins by tube. The one thing you can try before the feeding tube is buttermilk, I drink a liter a day and enjoy it very much, it is thick and easy to swallow, most people can't stand it but some people such as myself really like it.
Al
 
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Jenny B

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First, I can't thank you all enough for taking the time to respond. This warms my heart and brings tears to my eyes - the feeling of support here is just so wonderful and so appreciated.

I'm just figuring out how to use the forum so, sorry if I'm not replying the right way. I tried replying to individual threads but it just shows up at the bottom - so I'll reply to everyone in this message if that's okay.

@affected - thank you for your support! Yes, his behavior has changed a lot. He used to be fun-loving and humorous. Now he is generally hollow or quick to anger. He denies being depressed and doesn't want to talk about his feelings. He will fixate on tasks to stay busy - like sweeping the porch over and over again. I'm assuming this is just part of how the disease is affecting him - like it's his anxiety coming out. I'm so sorry to hear about your husband, but it sounds like you were very supportive and I completely agree with your approach in honoring his wishes. I'm trying to remind myself that often...that even though I may not always feel his choices are the best for his health, it's still his body and his right to decide. I appreciate your suggestion about encouraging healthcare professionals to tell him straight and advocating for him to make his own decisions. When so much is going on in his body that is out of his control, I imagine it is very important to feel in control of what he can.

@lgelb - thank you very much for the suggestions and clarity - I wasn't sure if motor neuron disease and motor neuronopathy were the same thing. I'm going to try your suggestions. Right now he isn't open to trying new things and won't let me make smoothies for him; but I'm thinking if I keep trying, he will let me. I think he wants to feel in control as much as he can, and controlling his meal choices (to the point of being obstinate about trying some better/more nutritious options), is just part of how he is managing this. I guess we are still working on the right balance - I'm just concerned about how much his health is being impacted in the meantime.

@lisa g - I'm so very sorry for the trouble you are having with swallowing. I can imagine that is very difficult to manage on a daily basis. I'm humbled by your strength and courage and am so glad that the feeding tube worked out well for you. I will definitely encourage my husband to consider it more, and it's so helpful to hear of someone else positive experience with it. I'll also check out Kate's Farms supplement - that definitely sounds better than the Boost he's been using.

@Mary2 - it's hard to tell about his urine output but I'll start paying closer attention so that I can monitor for dehydration...thank you, that is a great suggestion.

@rmt - It sounds like both of our husbands are a little stubborn. :) Thank you for sharing your story. I totally understand about the PTSD from the choking and coughing. It's so hard to watch to someone you love experience such terrible things and be so helpless in being able to alleviate their ailments. I'm sure it has meant so much to him that you have stuck by him and continue to support him.

@Firefighter58 - thank you for sharing your success with the feeding tube. It sounds like that is the best route to go and I would love to see my husband's burden with struggling to eat be resolved. It has become such a chore and I think he is just opting not to intake much at all if I'm not reminding him and nudging him to eat/drink. He very much wants to remain active and he tries, but I think it is hard on him to do what he wants to do when he isn't getting adequate nutrition. I'll try getting him some buttermilk...thanks for the great suggestion. :)

Again, thank you all for the outpouring of support. I don't know anyone that has experience with this and have felt a little lost without having people to talk to that understand. Your messages have been so helpful and encouraging! :)
 
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affected

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This is a wonderful place for support, so just keep asking questions, that is how we learn. Also you will often get some quite different responses to questions and this is part of the power of a forum. There is no one answer that fits every PALS and their situation and progression. By receiving a range of responses, you choose what sits well with you. We won't tell you what to do, but will suggest things that worked for us, or warn of things that didn't work so well.
I'm glad you have joined and reached out here.
 

Firefighter58

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I was like your husband to start with, but my doctor gave me a prescription to settle down my temper outbursts and uncontrollable crying, since then I have been fine. I enjoy life more now and look forward to tomorrow, and I am never hungry. I thank my doctor, my neurologist, my wife and the feeding tube for my contentment. I have also lost my ability to speak but with the aid of my iPad and a free " text to speak " app I can now communicate with others even over the phone .
Al
 
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Jenny B

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@affected - thank you for that! I have been reading many posts in the forums and have already learned SO much! Best of all, I have more hope now and it's less scary having a better understanding from real people and not just "google searches".

@Firefighter58 - Al, I really appreciate what you shared...especially about looking forward to tomorrow. It is so hard to accept that there is no cure for ALS, but just knowing that it is something that can we can learn to live with and still look forward to enjoying the day together, gives me so much hope. We are simple people who live in the country, and my husband especially, has always been content to spend our time here at home, where we can control more in his environment and meet the needs he has. If we can just learn all of the right ways to adapt to this new way of life, then I do believe there is still much more in life that we can look forward to together. Thanks for giving me that hope. I talked to him again today about a feeding tube after watching him struggle for an hour to eat some ground pork (he won't let me puree it). He is very picky and not up for trying anything beyond pudding (which today, he only had a half cup of), and now I believe he is going to have to give up the pork. He stopped drinking the Boosts yesterday, because he thinks they are causing him to have more mucus, which he chokes on. Every attempt at eating/drinking causes him to chokes and he gets these awful laryngospasms that are so scary to him and I both. He still thinks the allergy shots will cure him, but we cannot even come to an understanding about how he can get nutrition and liquids in the meantime (even if we go along with his idea of the allergy shots curing him). I respect his right to refuse the feeding tube, but it is becoming so hard for him to get nutrition and liquids in. I'm concerned that in his cognitive state, he doesn't fully understand what is happening as he continues each day without the calories and fluid he needs. Today he was more disoriented and still refusing to see a doctor. He does still agree to get his MRI and see the neurologist for the final diagnosis, but I just worry he isn't going to make it that long. I have to wonder if he is giving up but just doesn't want to say it. He won't talk about his feelings and he is tired of me nagging him to eat and drink. Not sure what else to do at this point.
 

Firefighter58

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He has to learn that there are two people in this boat and he has to respect your wishes to, there is no reason to worry about himself when there is two people suffering from this disease.
Al
 

affected

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I'm not saying this is happening, but there is a dementia that is often associate with ALS, particularly commonly with bulbar onset.
Yes, his behavior has changed a lot. He used to be fun-loving and humorous. Now he is generally hollow or quick to anger. He denies being depressed and doesn't want to talk about his feelings. He will fixate on tasks to stay busy - like sweeping the porch over and over again. I'm assuming this is just part of how the disease is affecting him - like it's his anxiety coming out.
If you go my profile and the about section there is a link to some information I have written about this that may help you to look at. Many with this dementia refuse being tested for it as they don't believe they have changed at all, and it can be traumatic to insist on this.

It can just help a little to understand some of the kinds of changes that can happen - most commonly if the PALS has this pairing of diseases, the FTD symptoms actually start before the ALS, even if only mildly.

Breathing issues can also cause behaviour changes.

Whatever is happening, you have support now.
 

Jenny B

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@affected - that last line you wrote, means everything to me. I can't tell you how much it has meant to me, finding this forum and hearing from you and the others. I have felt alone, and a little like I was losing my mind in all of this...asking myself, is this really happening or am I going crazy? I went to your profile and followed the link and read a lot on your site about your experience with your PALS and FTD. I'm so grateful for all that you shared...it has helped me undertsand a lot. It shed light on so much for me and the FTD symptoms that your PALS presented with are very similar to my husband's. He continues to refuse a feeding tube (even after his PCP encouraged it), and is taking in so little to eat/drink that I am just not sure how long he can live this way...probably less than 600-700 calories per day. He is down to 158 lbs (BMI of 19 now) and seems to be following the pattern of losing a couple of pounds every week. He is still in denial and seems more disoriented over the last week. I'm just trying to be supportive to him and make sure our children and I spend as much quality time with him as possible. He doesn't seem to enjoy family time like he used to and seems very withdrawn. I'm not sure if it's from being tired, depressed, dehydrated, or from the scopolamine patch. Maybe a combination of everything. He denies being depressed and just says he's fine whenever I ask. There's only a few words that I can understand anymore, and he resorts to texting me and the kids when he wants to say something, but even then doesn't say a lot. The hardest part lately is just not knowing what to expect next. I'm always so worried one morning he isn't going to wake up. It is such a scary thought. I feel like I'm constantly on edge...watching his breathing, listening to him choke and have laryngospasms, monitoring his intake. Everything just seems to be declining at a regular pace...a little more each week. Thankfully he can still walk fine. We take a walk every day... just have to go slow now so he doesn't become short of breath.

Thanks for listening. I'm so grateful to everyone on this forum. It's a terrible disease, but helps so much to feel support and not feel alone in this anymore. :)
 
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