Husband refusing to go to clinic anymore

[Mary2]

My husband adjusted to bi-pap well. However we did try several different masks. I think this is fairly common.
Just like with CPAP there are masks just for the nose or that cover the face and nose. It might be helpful if the respiratory therapist has several masks on hand for your husband to try.

It does irritate me that the health professionals are not taking the time to communicate with your PALS. I mean if your going to work with people, there are going to be people that are hard of hearing.

I Googled a little and there are speech to text apps that maybe your PALS could ask the Health Care Professionals to use.

What are you and your PALS doing now to try and have the Health Professionals write to your husband? Maybe they can text what they want to say to him. Maybe he can e-mail his questions through the Patient Portal and the health team can e-mail him back. My husband and I e-mailed Emory quite a bit. They were very good about responding.

I understand they are busy, but to not to take the time to address you PALS and communicate with him is disrespectful.

Some of the tele health software might have speech to text. I think Zoom does.

 

[Clearwater AL]

Gmathyme, is your husband aware you are participating with this forum?
My opinion, after following your situation... if he is not aware I think it might
be better to hopefully keep it that way.

And... I'd be reluctant to mention it to any of his care givers. This is your
private self place to relate, share, receive support, help and suggestions.

 

[lgelb]

Yes, that would have been a test of his breathing. If he couldn't register an exhalation volume, he may definitely need breathing support.

I would email or portal them, tell him he is complaining of air hunger, and ask (nicely but firmly) what needs to happen to get a BiPAP order going. There are alternative ways to test and record results.

 

[Gmathyme]

I’m glad to know there are different masks. I had only seen the kind that covered the face.


There is one nurse that has come a few times. She will do talk to texts with my husband and she will sit and write on paper back and forth with him. I thanked her a number of times for that because it makes a huge difference for him to be involved in the conversation instead of just talking to me about him like he wasn’t there. Yes, you are right it is very disrespectful and he gets frustrated with that.

The same nurse that takes the time to write him will also text him, but he doesn’t answer her texts,if I see them I will.

No, my husband doesn’t know about this forum. He is not much of a reader or writer. He use to be quite a talker but unfortunately he can no longer do that so talking is left to me of which I have never been too good at.

I do appreciate a place to come to, am thankful for all the help it means a lot.

 

[Nikki J]

Don’t allow them to talk to you for things they should be talking to him for. My sister lost her voice ( but was not deaf so easier). It used to annoy all of us when people ignored her but I would just look at them and say I don’t know Ask her. It may be a little more complicated with him because of the need to text but too bad it is their job to communicate with their patient

 

[Gmathyme]

Yes!! Thank you! That psychologist that was here kept asking me what medication my husband would be willing to take. That is what I told him. “Ask him,he’s sitting right there”. My husband was willing to go to the clinic till he came over to supposedly help. I do understand there are sometimes a lot of questions that I can answer quickly but don’t ask me about health decisions that he can answer himself.

 

[Nikki J]

Try to let him decide when he wants you to answer. An example is my sister often asked me to go over the med list. It was fairly long and she took things off label that required explanation but it was also simple facts. However that would only happen after the person was in the mode of talking to my sister first. I am pretty sure I annoyed some of the lazier people but I wasn’t there to make friends

Autonomy is super important and our society sidelines us pretty fast if we are perceived as weak in any way.

 

[old dog]

I completely understand where your husband is coming from when he says he doesn't want to go to more clinic visits. I also cannot do the breathing tests but am not short of breath nor do I have a CO2 buildup. My situation is different though. My way of describing it is although my formal diagnosis is ALS, my working diagnosis is PLS. I cannot speak or walk more than a few feet even though I use a rollator walker. I do not have a feeding tube and have no dietary restrictions. It's taking me longer to eat a full meal, and I have some trouble chewing.

During the first 3 or 4 years following diagnosis, I faithfully went to clinic visits--every 3 or 4 months, even though it's an 80 mile drive. Then I cut back to twice a year. Then along came covid, and I didn't go for two years. Transportation is a problem for me. One of my caregivers refused to take me to the clinic any more because he felt it was the same old routine and was of no benefit to me. I had to schedule a visit last May to meet a new neurologist and to get my prescriptions renewed. We agreed on yearly Zoom visits with an in-person visit to be scheduled if I develop a problem that can't be handled by my PCP.

Patients with full-blown ALS usually suffer a faster decline than I am experiencing and most likely have a need to see a neurologist more often. In your husband's case, it sounds like a bi-pap would help him to feel better.

 

[Gmathyme]

I “talked” to my husband. He did agree to a video appointment. After talking to them and then my husband agreed to go. My son is able to take us so that’s a blessing. The weather is supposed to be stormy but hope it holds off till we are in his truck also hope he (husband)doesn’t change his mind.

Yes,I understand why he doesn’t want to go also. It is a very long and tiring day and I don’t think he really wants to be reminded of how much he’s progressed in 6 months, he sees it everyday. He does need help with his breathing so they should help with that.

I do know now that they do video appointments so that is nice to know for the future so thanks for suggesting it. I never thought of that.


Another question, the nurse called for some pre questions before the appointment. She asked if there was any other equipment we needed. He has a pwc, rollator, shower seat and grab bars. I couldn’t think of anything we might need is there something I should mention. I did tell her about his trouble breathing.
Thanks

 

[Nikki J]

A patient lift for when he can’t transfer. Communication device for if he can’t type Whatever respiratory things he needs bipap , cough assist maybe.

 

[Gmathyme]

Thanks,I didn’t think of the patient lift. I did tell her about the breathing and that we don’t have anything for that.

 

[Mary2]

The power wheel chair is going to need a bracket to hold the ventilator. Also in your home, you will need to find a suitable table to place the ventilator on. The table needs to be lower than the bed.

Does he have a hospital bed? There can be a problem with the arms of the Hoyer Lyft not going far enough down for a regular bed. Also getting the hoyer lyft under a regular bed can be a problem.

 

[Gmathyme]

Thanks also didn’t know about the table. He has an adjustable bed he sleeps in or a recliner. Our bed might be a little too low but it is higher than a lot of beds. I guess this is what you call continuous on the job training.

 

[Mary2]

My husband had an eye gaze machine which would help your husband communicate. This machine uses the eyes and infra red to pick out letters on the machine(computer). I believe phrases can be stored in the computer as well.
My husband's speech was pretty good so we never used the eye gaze for speech.

However, my husband was a quad and he became very proficient at using the eye gaze to send text messages, emails, listen to audio books, and search the Internet. He had some trouble at first, but my son and he worked together and as I say he was quite proficient with this.

Yes, it is on the job training. That is a great way to think about it!

There are other devices on the market, I am sure. I have not kept up.

 

[Gmathyme]

He has a tobii dynavox that he uses occasionally. He has eye gaze on it but unless he can’t figure out how to spell something he still uses paper and pen. It is heavy. The VA set up his wheelchair so he could use it on there but he didn’t want that and got rid of the brackets. I tried to get him to download an app to use on his computer since he is better typing on that but so far he hasn’t.

That is really nice that your son spent the time with him to use that.