My PALS and denial

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vltsra

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My PALS is not in denial about his diagnosis, but he keeps insisting that he "just needs to get well." He has taken countless supplements for decades (well prior to diagnosis with ALS), and is always going on about detoxing his body. Honestly, if these supplements were working to keep him healthy he would not have developed ALS. We've tried various vitamins (all sold by his multi-level marketing "friends"), daily juicing, keto diet, gluten free, protein shakes, etc. Lately he is glued to YouTube watching Mark Manchester. I understand Manchester claims to have reversed his ALS through a combination of supplements, detoxing, gluten free diet, and aromatherapy. My PALS just spent several hundred dollars on the supplements he recommended. He also has a couple of friends who feed this by telling him to continue to "think positively" and telling him he can "beat this."

It probably a weakness of mine, but I become frustrated at what I view as his continued denial of the situation at times. He says I am being negative if I don't believe that he will get well, and asked me if I just want him to give up. I feel that he has put off doing an advanced directive and thinking about any of the future problems and developments I will face. I wish I thought he could get well and didn't feel pressured by this. I wish we could try harder to live in the moment and enjoy what we can now. He seems to want to wait until he "gets well" to do anything.

I don't know if any other CALS have experienced this and whether you have any advice. He won't consider support groups or counseling (not that those things are happening now anyway).

OK done venting. No one else seems to be posting on the CALS forum these days...

V
 

Jrzygrl

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Hi V,

Sorry you're going through this. My DH tried several "cures" before he accepted the fact that nothing was working. I didn't want to give up either, but hated the false hope it created. I'm sitting here in his office with a $6000 Bemer that someone convinced him would help. We also tried several "protocols", with no positive effects.

No real advice, but sending hugs. ❤
 

ARCG

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Hi V,

I can empathize. This is definitely another frustrating aspect of this disease, it seems to affect people differently and progression rates definitely vary.

We also have had well meaning folks suggest expensive treatment equipment, light therapy, multi level marketing supplements etc. but chose to pass on those. We implemented common sense methods, like a healthy diet, prescribed meds, doctor recommended supplements and avoiding falls.

The ‘think positive -you can beat this’ is especially annoying to me, as I believe it puts the blame on the patient for the illness’s progression and makes them think that there is something they can do to cure themselves. Having the illness is bad enough, without a guilt trip. The message should be, ‘ Focus on your quality of life today and have a plan in place for down the road’

Fortunately we both have advance directives as part of putting together our wills/etc. a few years ago. It is a good thing to have in place, ALS or no ALS. Perhaps you can frame it that way.

I don’t have a lot of advice, I am afraid. Its unnerving to see his progression and think about what’s coming and how we are going to handle it, and, for the most part, the planning has fallen to me. It means I have to be a realist. I don’t think you are being negative, I think everyone’s situation is unique and you are doing the best you can with yours. ❤️

Annie
 

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You are definitely not being 'negative' and I really agree with ARCG that the huge issue with the 'think positive' fallacy is that it invites blame. If only he had tried harder, or if only she had supported him better or whatever. It is a load of bunkum and it makes other people feel better, but doesn't change our situation one jot.

Sure having a positive attitude might make a difference, but not a cure. A positive attitude like this, one finding a cure could make things worse as our strategies for living well to manage symptoms may be ignored.

However you know your own heart, and you know you don't want him to just give up. My Chris would tell me that I just wanted to put him in a corner to rot. Very hard stuff, especially if the PALS is slow progressing. That probably makes it easier for people to keep suggesting he can find a way to beat it.

I wish I had true suggestions, I don't know the answers as he won't want to let go of these beliefs. I really get it though, as my Chris was going to the longest living PALS in history - yet he was rapid progression and gone 11 months after diagnosis.
 

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Annie gives good advice, V. The "anyone can be hit by a truck" argument is common sense, and applies both to advance directives and putting off things until "he is well." Maybe lean into his denial and say, OK, you are taking things that you think can help, sun does too, so let's go to the park today...
 

Dee Dee 0617

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I am probably going to get in all sorts of trouble for writing here, because I have ALS. I want to say thank you, God knows we couldn't maintain any sense of normalcy without you.
I understand your concern about false hope, gimmicky products, snake oil salesmen, and soothsayers. Only you know the person you're caring for. If you are a relative, this must be devastating to watch. I couldn't imagine any of my family going through this. If it had to be, I would gladly take this , over someone I cherish.
I can't speak for anyone else. I know ALS is non-treatable, and incurable. I don't have the financial ability to try this or that. I eat whatever I want, my doctor cautioned against loosing weight. I take my riulzole and continue with the radacava infusions. The only extra is I inhale thc products to ease the faciculations, and one a day vitamin. We all deal with our own mortality differently. I wouldn't try to speculate how another person copes.
Unfortunately I think you don't get to decide how, why or what they feel, think, or behave like. I had this idea of how my ALS journey was going to go. It was me, with my sons, daughters in law, and grandchildren looking through photos, talking about memories, laughing, sometimes crying. Reality they all have lives. We know what we mean to each other. I talk to my oldest every day, and grandchildren at least once a week. They drop in 2,3 times a week for a while. My middle, every Thursday 8:30 he lives 1500 miles away. The baby nailing him down for a minute is like nailing air. I FaceTime with him when he takes a minute to call. Lol. It is like you ok mom? Yes, you? Yes, ok gotta go. Cracks me up. I have raised 3 successful men, that was my job. Continue to support your ALS stricken loved ones in their choices, even if it doesn't make sense to you. My husband died 20 years ago, our sons were 8,14,and 18 they are now 28,34,and 38. I will miss them terribly when I die, but I have to meet them where they are not where I want them to be. When my husband died we had all of our arrangements made so I was able to grieve with my boys without having to tend to the business behind the ritual. It was only prudent and we felt our bodies were our responsibility.
I hope this doesn't offend you, because the truth is I couldn't do what you do. I am just not that strong. God bless you.
 

vltsra

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Thanks all for your input and insights. I guess I feel like he has been missing out on things he could be enjoying because he is so focused on "getting well". I told him I am willing to try whatever he wants to try. Jrzygrl we had "friends" who tried to sell us the Bemer too. I had to end the friendship after multiple attempts to pressure us into buying it.

I thought perhaps if I put together my advanced directive he might agree to put one together as well. No such luck. At least I have mine in place.

It is hard for me to manage everything...not just his illness and caregiving but his business and his rentals, his finances and bills, and my business, and our household and the broken sprinkler in the back and the washing machine that I had to fix myself because the repairman won't come. (I was actually quite proud of myself to have fixed the washer successfully). And the bathroom modifications and construction of the elevator.

We don't have kids so I don't have anyone to not come over. Not that we have visitors now. In a way the quarantining isn't so different for us and in a way it is. We had just finished the elevator and bought the van so we could have some things to do and then the world shut down. Yesterday for the first time I did get him over to the park, which was open for the first time in over a month. Not for picnics and parties but just for exercise. It is better for both of us if we can get out and have some sunshine.

This morning our caregiver, who has been with us for a little more than a year, told me she is going to be leaving us. She is pregnant with twins. I saw her struggling yesterday when we took my PALS outside so I think it's best for all of us. She has a proposed replacement who is coming tomorrow to meet us. I'm thankful for the time she has spent with us and wish her all the best.

V
 
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You are both missing out on things you could be enjoying together and that truly sucks.
My Chris was very different, and put all his energy into insisting on things like walking to the toilet and back (would take 15 minutes, inside a small house), but then had no energy to come for a walk, or even a wheelchair walk outside with me for some enjoyment.

So I felt like we couldn't live in the now, enjoy what we did have on any particular day, and was just racing around managing everything.

Again different situation for me, but I can resonate with so many of the feelings.

That is so awesome that you fixed the washer, I wouldn't have even known where to start - did youtube help you out? I have been stunned at some of the things I've managed to do with the help of youtube since Chris died.

It's really good for you to say all these things here, because it can really help just get it out, take a breath, and go back into the situation a little lighter for doing so.

I hope the new carer you meet will be a great fit, you really need that at the least!
 

Cristin P

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I've only just read this post and it's ironic that I'm also a cALS in San Diego! I'm 39, he's 41 and we have a 7 year old daughter.

I could have literally written your post about your pALS thinking he's going to get better and missing out on life. My husband is slow progressing, dx Aug 2018. We live in a 3 story home (the garage is the first level) and I had insomnia for the first year because I was so stressed about how we would handle later stages of the disease without being able to easily get him in/out of the house (there is a staircase to the front door of the house). He had always been the person in the relationship to make our financial decisions and plan for the future. But he continues to believe to this day that he will get Nurown any day now and then he will go back to normal and be able to walk up/down stairs, etc. I have boxes and boxes full of supplements that he's ordered since Aug 2018, taken a few pills of, decided it doesn't work and stopped taking. He has never wanted to talk about or figure out how to handle anything with me, not the financial, not the physical aspects, not a single shred of medical directives (does he want a feeding tube or vent?) or future planning for me and our daughter. He's just stuck on the idea that his life is only ON HOLD and once he gets Nurown everything will go back to how it was before.

I feel abandoned by my pALS who has left me to try to figure everything out by myself. He doesn't do anything to try to adapt to his changing physical circumstances and it's all entirely on me to figure out what to do. This forum has been such a huge help for me in figuring out the equipment to use when he needed a raised toilet seat, getting him a rollator to walk from the bedroom to the bathroom and his office (he still works from home). I just feel stuck all the time, not knowing if he wants a feeding tube, or a vent. He says he doesn't know if he wants it either. I told him it's not fair for him to not make a decision on it because it's forcing me to make the decision at the last minute when it's needed, and I know whatever I decide will probably be the wrong thing and he won't end up wanting whatever I choose. He just doesn't reply.

He stopped being able to get up and down the front steps around in October 2019. We had a pulmonologist visit on March 12 and that was the last time my pALS went downstairs or left the house. He finally came around to the idea that we have to move (although by this point I was facing all the packing and moving of all items by myself!) and we had signed a listing agreement to sell our house in mid-March. Me and our 7 year old daughter had gone to view a potential property (single story) for purchase and then the whole shut-down thing happened. Technically we could still list/sell our home and try to buy a new property. Honestly I've been so stressed about the new virus normal, working full time from home (although it's been a blessing to be home with my pALS because he had been home by himself and we don't have any caregiver or assistance at all), teaching our daughter at home, the thought of packing up a 2,100 square foot home by myself has overwhelmed me beyond the point of being able to take any further action. Not to mention the risk of having strangers come into the house to view it, exposing my pALS to the virus risk.

So we are still living in this 3 story house and I feel like I've given up on the idea of moving us out of the house. My pALS doesn't want to move because we bought this house with the intention of staying here until we grew old and died. I don't want to move because I thought the same thing. I feel guilty though. I see other pALS on social media and they are in the living room, watching TV and generally being close to the rest of the family. My pALS is only in the computer room, our bedroom and the bathroom. Our daughter usually stays downstairs during the day, she has her laptop for school set up in the living room and my work laptop is set up downstairs in the dining room. The easiest thing for me to do is just let us stay living here because I don't have to pack, clean, choose a new house, do all the documents, etc. But I'm constantly wracked with guilt whether it's the best thing for him or not. And it still doesn't solve the problem if he has to leave the house, and I'm specifically thinking about wildfire season and potential evacuations because we live in a high wildfire risk zone.

Wow I feel like I went way off tangent on this post. I've only been lurking around here without posting because my pALS is on this forum too and I've been concerned about him reading any kind of ranting/venting post about him. Although I've already said all these things to him and we communicate (or at least I try to communicate with him) about it regularly. I just don't get any communication or input back from him.
 

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Cristin and V, both of your posts really hit home with me. I faced the same situation with my husband. He was mostly in denial until probably the last week of his life when I could see that he was actively dying. He had slow progression with weakness limited to one wrist for about 4 years (2007) before he even went to his doctor to have it checked out. The diagnosis process took almost 3 years after that since he saw 3 neurologists and got opinions ranging from possible ALS, to definitely not ALS, to finally definitely ALS. My husband was always the optimist in our family and he truly believed that he was going to outlive Stephen Hawking and be around when a cure was discovered. I have always been more of a pessimist-- or possibly a realist.

I think he needed his denial and optimism to get him through this shattering diagnosis and illness of perpetual loss, although it was very hard on me. Luckily, we had our wills and medical directives completed before the ALS diagnosis or I do not think he would have done that after diagnosis.

I had to handle everything by myself-- applying for disability, medicare , supplemental insurance, ordering supplies , medical equipment and meds even though he was initially still physically able to do these things by himself if he wanted to. He just wanted no part of doing it or even thinking about it and would try to go to the gym every day thinking that exercise and supplements were the answer to prolonging his life.

His denial made him refuse using a walker or hospital bed. He fought me on needing to use a hoyer when it was hurting me so much to try to lift a 240 lb man by myself. He refused hospice for a long time, saying it wasn't time yet. He was asked repeatedly by his pulmonologist and neurologist whether he would choose to be on a ventilator and he always replied that he didn't know yet and that was his reply for years. He actually never made a decision about this and I had to at the end.

He would not discuss anything with me about funeral plans and I had to do this on my own without his knowledge.

We lived in our home that we loved for 28 years, but I knew we had to move because there were so many stairs and he was suffering so many falls. At least he agreed to move, but I had to pack the entire contents of a large house by myself and prepare the house for selling by cleaning and painting. Doing this and caring for him at the same time took a tremendous physical and emotional toll on me.

Not until about a week before he died did he seem to finally begin to have acceptance. He told me that he wanted me to give our daughter money from his IRA after he died. He told my daughter to get me out into the world again, from which I had been isolated for so many years. He told her to get me to change my online passwords to different stronger passwords!

I do wish that things would have been different-- that he would have been less in denial and more involved in decisions but he just couldn't do that and I don't think I could have done anything to change that. I know this is very hard for both of you and for any other CALS facing this but, as Max uses to say, it is what it is.

Sending you virtual hugs,
Sharon
 

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Such important things being said in here and as CALS what we discover and learn to deal with is that no matter what anyone says, we have to accept however our PALS decide to live and die this out. Some of them have FTD, some just have cognitive and/or emotional changes, some just respond because of the type of person they have always been.

I think that it is quite common for the CALS to feel very much pushed to the side, no longer an equal partner. Often we just feel like less than the hired help.

Yet our task is so important - to advocate for our PALS to have what they want. When there is a high level of denial that is nearly a crippling task both emotionally and physically. I hear the pain and it is very real.

Really important that this thread is a CALS thread so their feelings and needs can be expressed clearly. We got your back.
 

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I am continually in awe of what so many CALS undertake.

Cristin, am I understanding that even at the garage level where he is, your PALS would need to navigate stairs to leave in an emergency? Is that why he hasn't been outside? Thinking about the wildfires, I would certainly register him in advance with all the local EMS and firefighting units that keep such lists, and with Smart911.

Another thought on the cleaning/packing/moving, is that there are professionals who do such things -- I've done that twice -- and if you could find a property that would allow for more outside time/more rooms to be together, perhaps his progression rate, which, if he is at rollator stage after 1.7y, seems on the slow side, plays into that decision also. Here and I'm sure most places, home tours begin virtually and only proceed to physical tours if a buyer is serious and all precautions are taken.

That said, I completely understand that staying put is easier and I don't know how hard it would be to keep the things that you value in your home, from location to particular features-- just a caution that if leaving is literally dependent on stairs, it will never in many ways be easier to make a change than now.

I'm sorry that you're facing this.

Best,
Laurie
 

Cristin P

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Thank you for the reply Laurie and everyone else. He's actually up on the 3rd floor of the house (bedroom and office). So we would have to navigate stairs to the 1st floor with living room/kitchen/dining, and then more stairs to get to the street level/garage. We considered chair lifts a few times but I understand that ALS progression will render them useless when he can't sit up on his own, is that correct?

I have some friends who could help me pack but with the shutdown, no one is supposed to gather in groups and I'm not sure any moving company would be working at this time due to the virus. Something we had already struggled with figuring out right before the virus hit was figuring out how to get him out of the house to allow prospective buyers to view the home. We were going to have one open house only and I was going to have to find somewhere to take him for 4 hours or so and hope that one of those people would put an offer on the house.

I honestly don't even know what his physical ability is on the stairs. It's possible he can still do the stairs. The problem is that he says he's too scared to do the stairs and just outright refuses to use them. I think in an emergency he could still get down the stairs and his wheelchair is in the garage. It's just when he looks at me and refuses to even try, it's hard.

We do have a in-home physical therapist who has been coming over since mid-March right when the virus shut down hit. She has been helping with giving him some exercises to try but I don't think he actually does them regularly. All I can see is that he just sits in his chair and deteriorates in front of my eyes. It's so sad and frustrating because he says, "I'm not going to die!" but will do almost nothing about it except take different supplements. The PT recommended a gait belt, and I bought it, but when I have offered to use it to help stabilize him on the stairs, he refuses. Even the PT said she would use it on him and he refused her as well.

On top of that we got shipped a bipap machine. The pulmonologist said he should practice it 30 mins-1 hour each day to get used to it so he can start using it at night. However, he hates using it, and literally tells me "this device is torture" every time I put it on him. His breathing was maybe 70% the last time it was checked, although it's been a while because we can't go get it checked now with the virus. I also read that early use of bipap has good outcome for pALS. But if he really keeps insisting he doesn't want it and that it's torturing him, should I keep trying to use it and help him? Is it just a learning curve or am I torturing him?

V, circling back to your original post, my husband also took a lot of supplements over the years because he read certain articles about them. I've heard it speculated that some supplements could be a contributing factor to the onset of ALS, and while I know that we don't know what causes it and it doesn't help us to speculate, I still can't help it.
 

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It's true that a lift doesn't work well when core strength is gone, but while he has it, you might be able to lease one, which is pretty common.

I would not try the stairs if he is not sure of them -- that kind of thing tends to be a self-fulfilling prophecy and a fall is the last thing he needs.

Moving companies are still operating, under specified procedures. If you had a live buyer, they would wear a mask and your husband could potentially stay in the bathroom while they explored, then switch out. I'm not recommending one course or another, just saying that they are both options. My SIL just bought a new house and moved into it; my own neighborhood is seeing a lot of sales activity right now.

BiPAP takes getting used to and is best tried while something else like screen time is going on. Settings can be adjusted, masks can be swapped, liners can be used, to create more comfort. But it does take some interaction to get that right.

If you can talk honestly about the fact that refusing interventions and adaptations will both shorten his life and make it more "torturous," you may be able to shake loose some of the fear that is likely feeding his denial. And if he truly does not want to get outside when the sun is shining, clinical depression (of which denial is only one manifestation) is a strong possibility. And for PALS who are at that level, an antidepressant can indeed help, if he can get there.

I am sure he loves your daughter, so the memories that the three of you can still make, that could be very important to her, might be one approach to take, as might be a third party like a trusted friend.
 

vltsra

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Dear Cristin, your story sounds so like mine except that we are older and no kids (PALS didn't want them). I have to say I have wondered about the supplements myself. He has always taken megadoses of one thing or another. My PALS has been glued to Nurown press releases as well and has been thinking he will get better once it is approved.

Have you by chance had the ALS Association over to look at your house? I know, it's hard now with the current situation. They came over and we went over a lot of options to get my PALS in and out. They might be able to provide some suggestions for you. Another thing you could consider is renting out your home and renting a smaller, one-story place. I have a friend who has MS and they rent out their house.

We ended up spending a lot of money on an elevator. I did move him into the bedroom/bathroom in October because the two steps up from the living/dining were becoming too hard for him. Being able to get my PALS outside, even if it's only to the street in his Permobil, is worth all the difficulty as it raises his spirits so much. There will come a time when the gait belt won't help you. My PALS is at that point. We have a hoyer lift now as he can no longer stand. Unfortunately you will have to think about these things in advance. The ALS Association can help you with loaners, but for some things you will need a prescription, and the Dr. will want to see him, so at some point you will need to get him out of the house.

My PALS has been using the bipap for a year now. He was terrified of it at first, but he was also experiencing a lot of CO2 buildup (in my opinion). It was as if he had dropped off a cliff. He was sometimes incoherent and unresponsive. The bipap made him feel a lot better and he was back to his old self. Unfortunately he is at the point where he needs it all the time, and I have noticed he really struggles without it. You might try a nasal pillow although they don't work so well at night. A lot of people use CPAP machines, does he have any friends who have one of those? Maybe they could reassure him it's not so bad?

My PALS had a call from an old friend over the weekend who did not know he had ALS. Sometimes people don't even understand what it is; they'll say things like "I hope you feel better soon." When he ended the call I could see he was upset by it. He told me later in the day that he saw a video on some new research development for ALS. Then he said it's probably going to be too late for him. I guess the denial is the only way he can deal with things internally; he knows he has ALS. It made me feel really sad. I've been having some difficulty lately emotionally with this, seeing him struggling is painful.

Thanks for the encouragement and hugs from all of you. Don't know what I would do without them.

V
 
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