Desperately need advice about end stage swallowing problems

Lxy

My LO is in hospice care at home and is in the end stage of Alzheimer. Our hospice nurse told us to stop feeding him because he has problems swallowing (dysphagia), and there is the risk of aspiration pneumonia.

The past couple of weeks before this he could only drink liquids. Now, he coughs when trying to drink. The only thing that we are allowed to do is to swab the inside of his cheek with liquid.

The nurse said that he does not have much longer to live. 

Is there anything at all that we can do at all? 

I asked the nurse about intravenous feeding, but she said that this is no help, as it could cause fluid to leak into the lungs. 

I have read that Alzheimer's patients with dysphagia add a thickening powder to help them swallow liquids. 

Is this a viable option at this very late stage?

towhee

Lxy, I am so sorry this is happening. I hear in your post that that you want to be sure you have done all you can, for your peace of mind now and in the future. Your hospice nurse should have a supervising physician. Your hospice team should have a chaplain and/or a grief counselor. I suggest reaching out to the rest of your team and expressing your concerns. Hospice is supposed to be there for the family as well as the patient.

Hugs and prayers-

Michael Ellenbogen

The simple question is what did the person want when they were of sound mind? And if you don’t know that answer if it was you would you want to suffer more or just go in peace? If I was me just let me go and keep me as comfortable with as much meds as possible so I don’t know what is going on.  

feudman

Bless your heart...I hear & feel the love in your questions.

The Hospice staff are the pros...dont second guess their advice. Once the body begins to shut down, food & liquid (other than moistening the mouth) are no longer needed. Maybe ask to speak with the chaplain or clergy.

"Is there anything more I can do?" Absolutely! You can sit with him. Tell him how much you love him. And about all the special times you shared. Keep reminding him you are there with him. Reassure him that everything is OK, that you will carry on,  and for him to not be afraid or worried. Maybe talk of the friends and family he will see when he "crosses over." And that you will see him again soon. I rubbed lotion (the kind she always used) on my mom's face & hands. We had her favorite music on. Some folks sing hymns or say prayers out loud. Celebrate his life & be thankful you can be together.

Above all, pay attention: sometimes the dying will leave a special gift for those in the room with them. Sometimes they will have lucid moments near the end.  My dad said "goodbye" to me plain as day just before he took his last breath. Other parting gifts can be more subtle (a glance or gesture). My sister claims she felt our mom's soul pass from her body.

It is a special time you will always remember. Make the most of it.

Michael Ellenbogen

Feudman - I just loved what you said. 

LaurenB

I'll first respond as a caregiver:  you have taken great care of your LO and the dysphagia that they are experiencing is part of the dementia journey.  Be present with your LO.  Hold their hand, talk to them.

As a geriatric speech pathologist: Yes, thickening does help in some instances and hurts in others.  It can cause choking and pneumonia.  You would need to have a swallow test conducted either at the hospital in front of a video fluoroscopy machine, sitting up in a chair, getting x-rays while barium coated foods and drinks are fed to you.  You need to be alert for this to be done.  If not alert, the SLP will not conduct the test.  The other option is a FEES procedure where a camera is guided up the nose to the back of the throat.  Foods dyed blue are then fed to the person while the swallow is watched from the camera.  Again, if the person is not alert then the test won't be conducted.  All of this would be necessary to find out if the person is able to safely swallow different types of thickened liquids safely.  What if you find out that they are not able to safely swallow thickened liquids, or any liquids, or any food?  You find yourself in the position of having to decide if the patient wants alternative feedings (potentially for the rest of their life) without improving quality of life.  Is the patient even able to tolerate the surgery?  Your LO is already on hospice meaning that you aren't going to be actively pursuing aggressive lifesaving measures.

TL,DR; Go be with your LO.  You've made the best decisions that you can given the diagnosis of dementia.  I'm sorry that your LO is going through this.  Continue with the swabs to keep their mouth moist.

Lxy

@ LaurenB: I didn't realize that using thickening powder is a more complicated process involving hospital tests rather than simply buying one off the shelf from a local store and using it.

@ Everyone. Thank you so much for your advice and heartfelt comments. It's very helpful to have a community like this one to rely upon for support and advice when going through such a difficult process like this. Again, thank you!

Michael Ellenbogen

https://www.youtube.com/watch?v=GhnYXHupMYE

Michael Ellenbogen

This link may work better.

 

https://www.youtube.com/watch?v=GhnYXHupMYE

 

larryeny

Ideally, a modified barium swallow test would be ideal.

My Mom has dysphagia, and she has so many medical issues that I have just not been able to get her to get the swallow test (bear in mind, you have to make 4 visits to do this: one to the doctor's office to be examined, another to the hospital 3 days prior to get a COVID test, a visit to actually have the test, and then another to the doctor to get the results). My Mom is still alert, but she's not up to this. I have too many other doctor's appts that she needs to go to and every one is an effort to push her to go.

I took things into my own hands - I had to. I purchase the thickening powder. She hates it, but it has made a difference. I also have to queue her almost every single time she swallows a liquid to take a small sip. There is also something called the "Chin Tuck Manuever". Some speech therapists believe in it, some don't. I queue her every single time she swallows a liquid to execute this manuever.

Is her swallowing perfect? No. Does she still aspirate a bit? Yes, but it is much improved and we haven't had any major choking episodes in weeks.

The other possibility is a feeding tube, but that won't help his dryness and it may only prolong his life.

To be perfectly honest, the right way to approach this is with the swallow test. It provides detail on what types of substances the patient has swallowing issues with (liquids, thicker liquids, different type of solids) and it provides detail on the "level" or degree of swallowing issues. In my case, I had no choice but to take things into my own hands. I'm not saying that's right for everyone.

Salsam

My uncle lived with me a year with Dimentia after his wife died (They had no children) He had a bad stroke, and that is when I learned he could  come  back home with hospice care and have  very small sips of food.  He LOVED Pinot Grigio Wine and Ensure chocolate drinks...so he squeezed my hand when I asked him if he wanted wine.  The same with the chocolate drink.

My mom came to visit (her Dimentia was milder at the time) and she stayed with him and read to him...and my dad asked if his brother in law could come out and join us for dinner.  (his Dimentia did not allow him to understand what was going on.) 

The Hospice people are AWESOME....they really know how to help and keep your LO comfortable.  It is very hard to let go.  Virtual hugs. 

JJAz

My husband had dysphagia at the end stage. He drank thickened liquids and developed pneumonia twice.  He died the 2nd time.  If I had to do it over again, I would still let him drink thickened liquids if he wanted them.  But I wouldn't force them.  It's a tough choice either way.