Husband refusing to go to clinic anymore

[Gmathyme]

Hello,
This is my first time posting on a forum so hope I’m in the right place.
My husband was diagnosed in August at an ALS clinic at the VA. Since then he doesn’t want to go back there as basically he is tired of doctors,nurses and tests. We do have a home based primary care that comes to our house. He isn’t always so cooperative with them either. As of right now he can’t speak so I do all the talking.

I make his appointments for him then he gives me a hard time about them. I guess what I am asking is does anyone stop going to the clinic. Not only does he not like going there but he has gotten to the point where he doesn’t like to have the nurses come to the house. One called today and he just rejects the phone calls. He can’t talk ,so the nurse texts him ( she was just seeing if he was alright) He just looks at the messages ,doesn’t read it, then deletes it. As far as the clinic goes his reason was transportation, I don’t drive and he is unable to now. I arranged transportation to get there but he canceled the appointment and then just said he didn’t want to go.

I arranged for the home nurse and he’s not too happy about that. We have had a few “disagreements “ about that. He act’s like everything fine and we don’t need any medical help. I tell him ALS is too big of a thing for me to handle alone. He doesn’t seem to get it. I don’t see that he will change his mind any time soon and it takes three months to get an appointment. His next appointment on Friday next week but of course he already decided he doesn’t want to go. I guess I’m just scared of the future.

I’ve been reading and rereading all the posts for the last 6 months and it has been a lot of help, and am very thankful for this forum, it has been a tremendous help so far.

 

[Clearwater AL]

Gmathyme, what era Veteran is he? Ooops, I'm not suppose to post here.

So I'll just post this and leave...
Post Kuwait, Iraq and the wars that followed and up to today
there are Veteran support groups that communicate, meet and
support Veterans struggling emotionally. Something Viet Nam
Veterans don’t have much of. If he is post Viet Nam maybe
you could reach out to them for help.

(Ok, I see the Mods moved this to General Discussion.)

 

[Gmathyme]

He was in the military at the end of the Viet Nam war. He’s never too interested in support groups. He went to a few veterans groups along time ago but never went back.

 

[Nikki J]

This is really hard. It is certainly true that some PALS give up clinic but they don’t give up care. They find a local neurologist, pulmonologist, pt. He isn’t doing this and he is going to need someone to order equipment like a power chair to give just one example.

Is he just stubborn, angry and in denial? Or does he possibly have cognitive- behavioral issues? Frontal temporal dementia is unfortunately a not uncommon comorbidity with ALS. The difference is if he has ftd is his reasoner would be broken. If he is in denial/ anger there is a possibility of reaching him.

Is there a third party he might listen to? A relative? Friend? Clergy?

I certainly get being tired of doctors. I am incredibly so even though I like mine. Are televisits possible?

 

[Mary2]

Hi Gmathyme, Sorry to welcome you here.

There are people on the Forum who will be able to lay out some ideas/options better than I am able.

My husband was diagnosed at age 76 during Covid. We were able to do our clinic visits by Zoom. I don't know if the VA near you is still doing Zoom visits or if there is an ALS Clinic near you that is still doing Zoom visits. I can see how your PALS doesn't want to do the clinic visits. I am not sure my husband and I would have been able to keep them up.

The advantage of the clinics is they help get the VA or Medicare to pay for the various pieces of equipment that will be required. If you stay with the VA I believe you will be able to have Personal Care Assistants help with the care of your PALS later on. Some of this equipment is a hoyer lyft, Gastric tube feediing solutions, a wheel chair, and a machine to assist with breathing.

Perhaps your PALS doesn't want a G-Tube and a machine to assist with breathing. This is his right as a patient to refuse. Has there been a discussion at all with a doctor about what your husband's wishes are?

Perhaps your PALS is ready to discuss outpatient Hospice service with a doctor. Perhaps he wants comfort care. He is still going to need a wheel chair and Hoyer lyft before going on Hospice.

In some cases ALS is accompanied by Frontotemporal Dementia (FTD) and this impacts a PALS ability to understand and make decisions about their care. Does your PALS seem to fully understand the nature of the ALS? Do you feel there are cognitive changes?

We were referred to Synapticure at a certain point. Synapticure is a company established by the non-profit I AM ALS.
Our experience with them was okay. They operate by zoom.

 

[lgelb]

The VA should be able to certify facts needed for reimbursement for various goods/services, when/as needed, based on a visit in the last year, in most cases. Other than clinical trials that I doubt he's interested in, there's not anything essential about going to clinic. As others have noted, telehealth can stand in for most needs.

Sounds like he has reached overload in all this, but if you back off for now, there will likely be a time that he will be willing/able to access something of value.

 

[swalker]

There could be several things going on.

I decided not to attend clinic from the very beginning. However, I did develop a team of specialists that I could call on when needed. That has worked well for me. It sounds like this is not a path he is on.

It could be that he has some level of denial and/or depression that make him not yet ready to pursue medical personnel meetings or visits.

It is also possible that there is some level of Frontal Temporal Dementia (FTD) that is affecting his behavior.

Good luck sorting this out.

Steve

 

[Gmathyme]

Yes, he can be stubborn,but I don’t think he is in denial but he doesn’t want to think about it much. We have really only had a few conversations about it ,but everything has to be written so conversations are slow. I’m not sure if there is cognitive issues but there very may well be.

He has some odd behaviors at times. It does seem like his processor is slow just like everything else has slowed down. Things have to be repeated a few times but then he is very hard of hearing.I had gotten him to the point where he was going to go, then the home health physiologist came over to check on him, now he doesn’t want to go again. He has gotten a power wheelchair and he has had a feeding tube put in. He won’t fill out any advance directives. If it is brought up he ignores it or throws it out.

All he says is he wants to die at home. I do have a POA only because he couldn’t get in his credit card account and I had to talk to them. He is having trouble breathing now and thinks he needs oxygen even though the nurse says his oxygen is fine. I showed him an article on ALS and breathing. He wasn’t too happy about the breathing machine. I can’t make him go and don’t want to spend our time arguing about it. I’m not sure about a zoom visit I will see about that.

 

[lgelb]

So does he actually have/use a BiPAP? If he does not use it but needs it, that could certainly affect his brain since your brain needs the right mix of CO2 and O2 and other gases in your blood to function normally. If he doesn't have one, but his breathing is impaired, the VA may already have those data on file so they could place an order if you can even get agreement that he will try it.

If he needs a hearing aid, that is known to help with cognition. An audiologist could come to your home to test his hearing and fit a hearing aid.

Most PALS die at home, so that wish is neither unusual nor wrong.

One way to think of it is, what does he do all day compared with maybe something else achievable that would bring him more satisfaction? If he has the major equipment, again, seems no need to push medical visits.

 

[Gmathyme]

Yes, I do think he has had an overload of doctors and nurses. He had extra for the feeding tube and then the home health team all came to the house for awhile it seemed like there was someone every other day. It was confusing for him to know who was who as they always talk to me. Every once in a while they will spend the time and write down what they say to him. I usually have to ask them to do that.


He does have hearing aids but he still has trouble hearing and understanding,it really needs to be written down. This has gotten worse since his ability to talk is gone. The nurse with the home health (VA) has been pushing him to go to the clinic visit. Well actually they been pushing me to get him to go. I do worry that when he gets worse I won’t have the resources to help him.

I’m not sure if he would use a BIPAP I’ve tried to explain it’s not his oxygen but Co2 build up. He had no response except he didn’t like that machine. The oxygen ads make everyone look so happy and it is small compared to breathing machines.

What he likes to do is fix and build things. He is unable to do a lot of that anymore. Hopefully now that the weather is getting better he will get outside, but that will be a problem because he’ll want to go in the shed then I have to worry he’ll fall.

Thanks for this forum. It is a blessing to have a place to go. We don’t go to any support groups so am very thankful for this.

 

[lgelb]

Whoa, are you saying that he is on oxygen? PALS are usually not. That is only going to accelerate CO2 buildup and any cognition/balance issues. I would re-discuss that very seriously.

To start, he could use a BiPAP just at night or for naps or any time he wanted that is not any bigger than the oxygen concentrator, with the same kind of interface in his nose. It would be helping him be better instead of worse.

 

[Gmathyme]

Yes, I do think he has had an overload of doctors and nurses. He had extra for the feeding tube and then the home health team all came to the house for awhile it seemed like there was someone every other day. It was confusing for him to know who was who as they always talk to me. Every once in a while they will spend the time and write down what they say to him. I usually have to ask them to do that.


He does have hearing aids but he still has trouble hearing and understanding,it really needs to be written down. This has gotten worse since his ability to talk is gone. The nurse with the home health (VA) has been pushing him to go to the clinic visit. Well actually they been pushing me to get him to go. I do worry that when he gets worse I won’t have the resources to help him.

I’m not sure if he would use a BIPAP I’ve tried to explain it’s not his oxygen but Co2 build up. He had no response except he didn’t like that machine. The oxygen ads make everyone look so happy and it is small compared to breathing machines.

What he likes to do is fix and build things. He is unable to do a lot of that anymore. Hopefully now that the weather is getting better he will get outside, but that will be a problem because he’ll want to go in the shed then I have to worry he’ll fall.

Thanks for this forum. It is a blessing to have a place to go. We don’t go to any support groups so am very thankful for this. I don’t feel so all alone.

 

[Gmathyme]

No he is not on oxygen. He just thinks he should be. His oxygen levels are good.

 

[lgelb]

Ah, good. Well, we have to exhale a couple of pounds of CO2 a day, and it builds up in the body when breathing it out (exhalation) is hard to do, as is part of the package in ALS respiratory problems. So using oxygen just brings the need to exhale more CO2, which PALS can't do as well once their breathing muscles and other muscles that jump in to try to help get weak.

Pulmonary function tests (PFTs) should be done at least every quarter, or if something changes in breathing, until the PALS does get BiPAP. So if he thinks he needs more breathing support, he probably does. But it should be with BiPAP.

I would be pointing out that his feeling that he needs more oxygen is probably a sign that he would be a lot more comfortable with BiPAP.

 

[Gmathyme]

Thanks that is a good explanation. I can explain that to him.

He had a breathing test I’m not sure what test it was. It was on the same day he got his diagnosis and we were somewhat in a daze. Anyways he couldn’t close his mouth around the mouth piece that they had. They took that off but he couldn’t exhale enough to register on the machine. They finally stopped trying. He did have a hard time hearing them when he was supposed to take a big breath and when he was to blow out.