Loved one diagnosed with ALS

[DianePD]

Hello and thank you in advance. My loved one cannot walk or do much of anything , and between myself and a care giver who is only there a few hours he needs so much more help but wants to try to do things from his power chair like watch TV, microwave meals etc.. It is heartbreaking and this disease is the most cruel saddest thing in the world. Please if anyone can offer any help, advice, or just information about this disease, I'd appreciate it so much. Thank you.

 

[lgelb]

Welcome, Diane, to the club that no one wants to join. We will support you however we can. Some of the stickies may be helpful if you haven't seen them.

Is there something specific that your PALS wants to do from his chair but can't, that there might be a way to adapt?

In that same vein, I think our most universal advice will be to live your lives as best you can until you can't, while controlling the impact of progression as much as possible with common sense strategies that work for you both.

 

[Mary2]

Sorry to welcome you here Diane. ALS requires adaption. What a PALS can do at one point, they won't be able to do at a point further down the road. We were able to get into a daily routine which lasted quite awhile. We had a caregiver about 4 mornings a week and the afternoons to ourselves. I treasure the time we had together in the afternoons. Later on, as I was getting tired we added evening help a couple of evenings a week.

I see your PALS was only recently diagnosed. How are you doing? Have you been to any ALS clinic visits? Only answer if you wish. I certainly don't wish for you to disclose more than you are comfortable doing.

 

[DianePD]

Thank you both . I don't live there and am very far making things harder due to the long commute. Is anger irritable mean behavior common? I have so many questions and appreciate you 2 as the only ones who I've been able to talk to. I read somewhere here I think where the person told the sibling to leave and she did. Well I've been told that too. Again, thank you, I hope to learn more about this horribly cruel disease or condition that is beyond heartbreaking, my words fail me right now...
I am having trouble navigating this site and cannot log out. I'd appreciate any help explaining it. Thank you.

 

[Mary2]

Hi Diane, If I want to log out, I go in under my name in the upper right hand column.

Am I right to infer that your PALS is living alone and has a caregiver in the mornings?

This particular thread under Current Caregivers is limited to Caregiver comments only. The PALS thread is limited to PALS comments only. But if you post a thread under General discussion of ALS both groups can post. The PALS who live alone would be able to post about their daily routines and other PALS would be able to post about what they do to stay independent. This may be helpful.

Yes, I can see how a family member trying to live independently with ALS might lash out and be mean and irritable to a family member trying to help. Especially when the diagnosis is new. There is also a condition called Frontotemporal Dementia (FTD) that sometimes goes along with ALS. I am not saying your PALS has this, but you need to watch for it.

So ALS can first present as Bulbar (impacting speech/swallowing) or limb onset. I am inferring your PALS has limb onset. Limb onset seems in my mind to progress a little slower than Bulbar onset.

Overall everyone's ALS moves along at a different pace. But you can expect that your PALS will need more help. Many if not most PALS are cared for in a home environment. Some do go to nursing home type places, but research needs to be done to confirm which places will accept an ALS patient. ALS patients are labor intensive and some nursing homes will not accept an ALS patient for this reason.

In the future, really at anytime, you can expect that your PALS will need a Hoyer Lyft to get in and out of the bed. He will need a motorized wheel chair with a tilt feature that enables him to lean back to remove pressure from his skin.
He will progress to being quadriplegic.

As this happens some of the Bulbar symptoms will start to appear. His doctors will want to place a gastric tube early so that he can with stand the anesthesia. This procedure does not take very long but does require anesthesia. So tube feedings are going to be required as swallowing deteriorates.

His respiratory status will also deteriorate and he will require a mask hooked up to a machine that provides Bi-Pap air flow. Extra oxygen will not be given but the BI-Pap will keep the air ways open to promote air flow. He will become dependent on this machine.

This is a very brief over view of what is likely to happen. It is very sad but believe it or not, there are good days with ALS. My husband kept up with the news and television programs and audio books and we had some very good afternoons, despite the ALS. But ALS is a thief and robs PALS of independence and eventually us of our loved ones.

I cared for my husband in the home with abut 25 hours of help which I increased to 30 hours the last six months. The ALS Association was helpful and supportive to us. We participated in a zoom support group with other ALS families.

 

[DianePD]

Hello Mary. First, thank you! I am sorry I didn't know where to post or what the procedure is. I am so distraught and have more questions than I have words to ask. They said there is no test, no cure, no treatment, and it's fatal. It's the saddest worst thing I've ever heard of. And I want to help and hope I do so properly. He has the lift and sling already as well as the chair and the breathing machines. I appreciate all your support and don't know anything about what you've mentioned. All they said was its ALS but there is no specific test to diagnose other than what they see. It boggles my mind that the medical team is either not certain or claim to be not certain. I'm sorry it's just so heartbreaking and overwhelming. All your kind words are appreciated and it saddens me thinking of what's to come. I know that machine you mentioned, he has that. Another one too that is through the mouth instead of nose. I'm very sad wanting to do what I can't which is make him what he used to be, an extremely independent person who did every single thing for the family who was always the only one there to help and did all through the kindness of his heart.
Again, thank you Mary.

 

[Mary2]

Diane, Your Pals sounds like a wonderful family man. I can surely relate to how new this diagnosis is and how sad and heartbreaking the situation is. It is very difficult at first to wrap one's head and emotions around the situation that a loved one has ALS. I still haven't completely wrapped my head around the idea that my husband had ALS.

I would be unsettled as well if the medical team was waffling and unsure if the diagnosis was ALS. There is a test called an EMG which stands for electromyography. It measures how well nerves and muscles are working. This test is usually used to help diagnose ALS. Many people in the ALS community feel that if at all possible the EMG should be done by a neurologist at an ALS clinic. The test involves placing needles into specific muscle groups and measuring how well the nerves and muscles work.

There is no cure for ALS but there are 2 drugs that an ALS patient may meet the medical criteria to take. One is Riluzole and the other is Radicava. I have not kept up on how well these drugs are suppose to slow the progression of ALS. My husband qualified for Riluzole.

What I have seen on my 3 years on the Forum (which is not very long) is that sometimes family members that do not live with a loved one diagnosed with ALS are tasked with determining what their role is going to be in providing care for the ALS patient.

In some situations the family member recognizes they are going to be the primary caregiver. In other situations the family member realizes some one else is going to be the primary caregiver. When someone else is the primary caregiver than family members can rally around this caregiver to help provide hands on care or emotional support.

How fast this needs to be sorted out depends on how fast your Pal's ALS is progressing. If he is currently using the breathing machine and currently using the Hoyer Lyft than this probably needs to be sorted out sooner rather than later.

 

[DianePD]

Mary, it's the saddest most heartbreaking disease I've ever witnessed and my help is certainly not going to be enough. We are not financially able to pay the high prices of full time caregivers, some quoting 50.00 an hour. It is hard enough just knowing he has this disease,he doesn't deserve this to end his life, it is not fair!. Someone so kind and good who did everything for the family reduced to not being able to do anything.
Because of the distance it is not possible for me to be there all the time, I don't live there, but it is so small there's not enough room for me there anyway. I have and will stay but I'm really worried how to proceed. He also likes his own ways and is vocal about getting his way in his own home. I don't know how the caretaker and him interact because I'm not there all the time. Your words make me worry now. It's beyond overwhelming. Thanks Mary.

 

[lgelb]

Diane,

Without a doubt, he will need someone in the home full time as the disease progresses, since, for example, someone dependent on the breathing support machine who cannot move their arms is at risk for choking at so on. And of course they cannot feed/toilet/transfer themselves, ultimately.

Are there no other family in his town? Does he qualify for Medicaid in his State? If so, he could get some help paid for that way.

But if someone is paying themselves, or the family is helping out, it is usually most economical to work with students, such as those in pre-professional majors, via networking and postings at local schools. The care he needs is not skilled nursing and no way it should be $50/hour.

I gather suggesting that he move closer to your town is not an option? He may reject that now, but there may come a time when he understands the reasoning, so you might investigate the options meanwhile.

 

[DianePD]

Yes he does need more help than one person can provide. He prefers to do things on his own and is very angry. He prefers to stay in his chair but doesn't want anyone telling him it's better to sleep in bed. Another moderator mentioned care can't be forced and that rings true in this situation. When this first started, he never wanted to go get medical advice about what it is exactly. We know it's ALS due to the immobility, tongue twitching, dropping things constantly as well as breathing while talking difficulty...this is all what the hospital said it likely is, but no one wants to be direct or else they just keep saying it's a hard disease to diagnose. It is absolutely the worst most cruel disease anyone could ever get and I can understand why he's so irritable and angry all the time. But I also don't think I should be the one his anger is directed at. I can see the difference in his mood. He was always a kind gentle soul doing any and everything for the family, and now cannot do anything. I'd be very angry too! Thank you for reading and offering this forum.

 

[DianePD]

Do the hands stop working? He can work his wheelchair by hand as well as get food eat it etc.im told every case is different but I am asking about the term progression . Meaning what? He hasn't been able to walk at all for awhile but can do things with his hands. Not like before but can eat and grab foods etc.What about the breathing? He can breathe but doesn't use the nachines as often as he's told to. Which goes back to the statement the moderator made that care can't be forced. So if that becomes the case, is there any help/advice available? Are ALS organizations available or helpful? If so, how does one find out? Thank you.

 

[DianePD]

Thank you to whoever wrote the piece on whether or not one has ALS. Very informative ! Part of one sentence explains everything for me. That is ..."what you can't do increases "... Sadly this is precisely what happened to my dear family member.

 

[lgelb]

Yes, most often the hands stop working before the end. Some people can use some other muscle to work the wheelchair, such as a pillow switch, head control, or eye gaze, but any of those are difficult. And even if someone can control their chair, feeding, toileting, taking the mask on and off, etc. generally all are things that require assistance as the disease progresses. For most PALS, all voluntary limb movement, along with the ability to eat, drink, speak, and breathe unassisted are gone by the end.

In Illinois, the largest support organization is ALS United Greater Chicago -- you can find them on line. If your brother is outside their service area, they can recommend resources wherever he is.

Where was your brother diagnosed? The way you have described the process and the statements made is troubling. ALS is a clinical diagnosis and one meets the criteria (including testing) or not. It is also a diagnosis that requires a second opinion depending on where the first was rendered.

I am not saying he does not have ALS, but you seem to have doubts and I wonder if he does as well, which could relate to his ambivalence toward interventions to extend his life.

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