Family dealing with changes

[Cristin P]

Hello:
Sunday evening, my husband was standing at the bathroom sink for me to brush his teeth. After it was done, he had extreme difficulty turning away from the sink to the rollator to walk back to bed. I foolishly believed him when he said he had been standing too long and that's why he was nearly unable to turn and walk back to the bed. Yesterday morning, he got up and walked to his computer chair as usual, but about 10am he said he had to use the restroom and was unable to stand up from the chair. I am not strong enough to lift him and because of his denial, he had been telling doctors on the remote phone-call visits that he still walks and still "has all his muscles" (he says, patting his thighs). Clearly it's not the case. I ended up holding a mop bucket up for him to pee in the rest of the day. Later in the afternoon I was able to pull him up and get him to the bed where I assumed he would lay without getting up the rest of the day. I went downstairs to make dinner and banana bread with our 7-year old daughter, when I heard a howling from upstairs. He decided he had to pee and tried to stand up from the bed on his own, but instead just collapsed on the floor between the wall and his side of the bed. (He has refused to switch the side of the bed where he would not be against the wall). I ended up calling my mother and she came with my step-brother who helped pull him off the floor onto the bed where I instructed him he had to remain.

So at this point, is a Hoyer needed? He still has movement abilities, he can lift and move his legs (somewhat) from the bed, can kind of move his arms. But it seems his ability to bear weight on his legs is slim to none. Another thing is that we both have had bad nights of sleep for the last week or so, and I was wondering if the lack of sleep caused a sudden loss in leg strength? Could it be possible that getting him more sleep would allow him to resume some of the walking functions he was previously doing? (Just walking to the toilet, the bed, and his computer chair).

My second question is about the emotional part of things. My daughter is terrified. She's been "scared" at bedtime for many months now, and I can only assume it's because of what's going on. I got angry at my husband because this morning, he insisted on "going back to work" (meaning getting to his computer chair). I told him it wasn't possible and he needs to go on disability or we have to figure something else out because I can't lift him and we have no Hoyer or any other help. Again he howled from the bed, crying and screaming out, "what kind of life is this to live just sitting in the bed all day!" I have to be the terrible person who looks him in the face and say, "it's your life!" And him just insisting that he has to work, he has to get back to work.

I ended up putting the wheels back on his computer chair (we had removed them due to instability), pushing it to the bed, pushing him to seated on edge of bed, and then helping him stand from the bed and flop into the chair. Then I pushed the chair into the computer room. I felt completely like Sisyphus.

In the meantime, I'm supposed to be getting my daughter ready to go to her summer day-camp, and she's downstairs crying out for me to come make her lunch. I know she's upset about everything, and asked me what was going on. She knows about his ALS and I've told her he's going to get worse and worse. But the thing is, he's told her about Nurown and that once he gets it, he will be all better. And she's kind of "banking on it" coming true. She now says the same thing, "I hope papa gets that medicine soon!" I don't have the heart to crush her on this by telling her it's not gonna happen.

Does anyone else here have any advice on what to do to help my daughter? I feel terrible that I drove her to the summer day camp this morning and sent her off like normal. She was very upset this morning after hearing everything that went on, said her tummy hurt and she felt weird. I know what she's feeling because I feel that way, too. Completely unstable and like life has fallen off a sudden sharp cliff. We are still falling and we don't know where the bottom is. Should I keep her at home the rest of the week or something? Should I keep taking her to the camp like normal? She's an only child, and she has no cousins or friends to play with, so I've thought it was important for her to keep going. But is it worse to push her to maintain the normal routine in this really unstable, challenging time? Should I also tell the summer camp owner about our situation? We have not told her school nor this after school/summer camp program about my husband because he hasn't wanted anyone to know, even his employer, about it.

Apologies for the long rant and many many questions. I'm just feeling so overwhelmed with everything right now. I don't even know what I'm going to do when he has to have a BM. I don't have a bedpan (even if I did, he refuses to use one). I can't hold up the mop bucket to the computer chair for him to make a BM. The equipment we have is a Shower Buddy chair but it doesn't fit over our toilet. I CAN roll it over the mop bucket but he has also refused to BM in the Shower Buddy. I'm literally at my wits end.

 

[affected]

Hi Cristin that is a lot going on.
Your husband could continue working if he had the right equipment.
You are at risk of serious injury and need equipment too.

If he falls again, you need to call for the fire dept to come get him off the floor - do not put yourself and your family at risk of injury.

Do you have a clinic you attend? He needs some assessments and equipment ordered asap, and you know this. How you get him to comply with just the basics for safety will either take a meltdown by you or a very cool head.

If he wants to work, that may be your key. Many people work from in a wheelchair and it would give him great freedom. A urinal or a condom catheter would even reduce the amount of energy he spends on transfer tasks, and give you safety.

 

[lgelb]

Yes, you need a Hoyer now, Christin. Your local ALSA or MDA chapter may have an indefinite loaner. They can also be purchased on line.

I doubt more sleep is going to improve his walking abilities significantly. This is a progressive disease. As Tillie says, I would get a power wheelchair evaluation underway with his clinic or other care team.

And I would just tell him that since he naturally wants to work and otherwise be out of bed, Hoyer transfers and doing BMs seated on the Shower Buddy (or hovering in the Hoyer sling over a bucket or the toilet if that works) are the way that happens. If his voice is strong, he may want to explore dictation on his computer or phone if he hasn't already, and start to look at head mice, etc. If his fingers are stronger than his arms, ErgoRest or similar attachments to his desk may help him type for longer.

It's only fair to manage your daughter's expectations about Nurown or any other "cure." She needs time to come to terms. You may want to consult her school counselor or another resource, about the best way to frame this. There are also online support groups for P/CALS who are parents, and guides to those conversations on line.

Naturally, if she knows, it would be wrong to tell her it is a secret, and some of your husband's tension may come from the secret-keeping as well, so I would spend some time working out the whom and how to tell list, for your family's mutual peace of mind. Unless there are financial implications, like he would be terminated if his illness were known, I cannot think why he would not tell his employer, and if he has disability insurance through his company, there may be strategies to when/how to file that require more information about the policy.

Has he filed for Medicare, which is automatic with this diagnosis, given enough work history? There are a number of considerations depending on the size of his company, with using that / employer coverage.

Best,
Laurie

 

[Nikki J]

Laurie he is still working. Medicare comes with ssdi.

Christin I am sorry. My sister was diagnosed when her daughter was 9. The relevant people at school ( teacher, guidance counselor, nurse and principal) were told as soon as my niece knew. My niece also immediately went into counseling. This is a terrible thing for anyone and especially for a young child. My sister was always realistic with her daughter but at the beginning my niece clung to various hopes - someone mentioned lyme and she hoped it was that for a while. The Nurown piece is hard as your husband is the source.

gradually widening your circle of those in the know is the minimum. It can’t stay a secret

yes a hoyer a pwc, urinal or condom catheter. All needed desperately

i am very sorry

 

[lgelb]

You're right, Nikki, I put the cart before the horse on Medicare -- it is the decision to go on disability, if applicable, as coordinated with Medicare filing, that may be important in terms of benefits received.

Nikki is also on point that with having hope diminished, your daughter would likely benefit from talking with a third party.

 

[Cristin P]

We don't really have a formal ALS clinic we attend. We are under Kaiser and the closest ALS clinic is a 2 hour drive away. They were supposed to open an ALS clinic for Kaiser here in San Diego in April, but then due to the virus, they have not opened it. We did get transferred to the neurologist that was going to head up the clinic and we had a phone visit with her last week or so. I feel like it's difficult to have Clinic visits over the phone, only for the reason that they aren't able to physically "see" how he's able to function, and again, due to his denial, he downplays how disabled he is to them. We do have a manual wheelchair and this morning, I was able to get him off the bed and into the wheelchair, which is pushed up to his regular computer desk.

The ALSA replied to my email to them about the lift and said I needed a prescription for it. I emailed the neurologist right away and she responded today with a referral for someone to come out and assess. I assume a hospital bed would be needed as well, as I've read on other threads that normal beds do not have the height clearance?

Yes, he is still working and he really needs to keep working for his mental health. He's not the kind of person who can sit around and do nothing. He has always been the main breadwinner, and he also says he has disability coverage thru his employer that we would receive for some amount of time (I'm not sure how much), and then we would also request SSDI/Medicare once he goes on disability. I've raised that with him, but again he really doesn't "want" to go on disability.

I am also still working full time, so our "new normal" in the mornings has been very stressful. I'm looking at Care.com for having someone come out in the early morning to help get him up and ready in the morning at his computer for working, until we are able to get the lift and I can go back to doing it myself.

 

[vltsra]

Dear Cristin,

As everyone has said you need a hoyer lift for him. You will also need a power chair. Actually, that should give him some freedom to move within your house by himself. Even a transport chair will require someone to push him.

Of course, all of these things take time and a prescription from the doctor. At any rate, these days most doctors are doing video consults. His primary care physician should be able to help with things if your PALS hasn't been to the local ALS clinic. My PALS' PCP helped us get the power chair. His physician must know the situation and should be able to help you expedite getting these things approved. Have you been in contact with the ALSA? I'm here in San Diego too. They have been very helpful to us. They have loaner equipment and can deliver all of this to your house.

As I recall, you are living in a house with several levels. The ALSA came out and helped us decide what modifications to make to be able to get my PALS in and out.

I'm sorry, I don't have any advice for you regarding your daughter as my PALS and I don't have children. My PALS is also banking on Nurown but it's just the two of us so there's no one else. One thing I do to get my PALS to do things is say "yes, I know you are hoping for this treatment to be approved and to work, but in the meantime I need to get you XXXXX so you can continue to work, etc". Fill in the blank with hoyer lift, power chair, etc. My PALS and I talked about the denial and he tells me he just needs to have some hope.

With regard to toileting, yes it sucks. I bought him a commode chair and bucket and that's what we've used for 9 months now exclusively. Initially when he could do standing transfers we helped him pivot and sit on the chair next to the bed or his lift chair, but now we transfer him using the hoyer lift. You can get an inexpensive commode chair at the drug store. I did buy a bidet toilet seat but now he doesn't use it. It's come in handy with the toilet paper shortage!

I'm sorry Cristin. ALS is hard on everyone involved. Hang in there, we are here for you.

V

 

[vltsra]

Oh and I also wanted to mention that we are renting a hoyer lift with option to buy if that helps you get one sooner. There are a number of stores in the Kearny Mesa area that carry them and can rent them to you. That might also make it more palatable to your husband.

V

 

[affected]

If you can do a video visit for evaluation, and speak with them or email in advance about his downplaying of things, they can ask him to demonstrate abilities to them. So if he says, oh my legs are pretty strong, they can request he do a few things for them to observe.
They should be sensitive enough that this doesn't become - "catching him at a lie", but simply part of the process they follow.

 

[Cristin P]

Thank everyone for bearing with me thru my dramatic post earlier. I "know" what's coming for my pALS, but every time my he loses a major function, it feels like it just crushes me all over again. It's like once we get a good routine down, it changes and I have to figure everything out last minute. I have Asperger's so routine has always been an important way I've kept my life functioning, therefore, I struggle with the change but am trying to cope the best I can. Thank you all for your support.

 

[affected]

Hey Christin, don't apologise for being dramatic. This is horrific to go through. I felt like I was just screaming inside my head. I had support here, in a fb group for CALS, with a counsellor and when I went on antidepressants the screaming finally stopped and I kept my head above water ... just.
To most people I was doing brilliantly, but only other CALS can understand that inside I was not brilliant, it was hard beyond words.

Please let us know how you go with getting a hoyer - this is really critical. If you drop him, you risk both being injured and on the floor unable to get up.
My husband had awful falls because he was convinced he could do things he couldn't and some awful injuries. Some of those never healed properly and left him in pain for the rest of his days. This is all serious stuff.

 

[Cristin P]

Yes, the neurologist ordered the lift and a home therapist. I got calls from Apria who I guess we will rent the lift from, and a home health nurse that will schedule an appointment. Not sure how long it will take. Crossing my fingers.

 

[affected]

If it doesn't happen fast, call and follow up. Sadly sometimes we need to be the squeaky wheel.

 

[vltsra]

Good for you Cristin. These things will help you tremendously.

I will echo Tillie's comment on the antidepressant. It helps me deal with the overwhelming emotions.

Keep us posted on how you are doing.

V

 

[ARCG]

So sorry you have to go through this. It’s a lot all at once. we also have a shower buddy and it did not fit correctly over the toilet so we hired a handyman and had a different toilet installed, Our problem was it was hitting underneath part of the tank wrong when we rolled it over. We got a toilet just a little higher (I don’t remember what size) and it worked. I also second the bidet seat, my husband actually loves it and wishes we had done it even before he got sick. My husband also didn’t want to switch sides of bed, but thank goodness he did, no way I could transfer him on the side he was originally sleeping on. This is a hard road, but the right equipment can really help. This is a great site for support, I don’t what I would have done without these kind folks.