Tips, questions, and support for FTD/ALS caregivers

[Dagmar]

@lesliedas13gmail-com – – did you have questions or advice to share?

[Dagmar]

Question for FTD/ALS caregivers: what tips can you share if your pALS doesn’t understand the need for consistency in treatments and daily routines?

[Leslie Das]

My 83 year-old husband pALS was diagnosed with FTD dementia in 2020 and was diagnosed with ALS in December, 2022. Sometimes it’s hard to figure out which symptoms are the FTD and which are from the ALS.

Currently he is able to feed himself ( with finely chopped foods and a mildly thick nectar thickener for the fluids.  He has a very good appetite and likes his food.  He is still coughing/choking during or after eating.  His diaphragm has reduced strength. He still walks with some guidance and with a walker where he can sit to rest when tired. He is completely incontinent for both bowel and bladder ( which I think may be due to the FTD).  He is taking both Riluzole and Radicava.  In the last 2 weeks we have stopped the twice-a-day Reylivrio (under doctor advice) because we thought it may be the cause of his very frequent and loose bowel movements. That seems to be resolved now and we are waiting for the doctor’s advice on whether to stop it completely, or try a re-start on a once-a-day or twice-a-day trial.
He is no longer competent to make any decision about his care, so that responsibility has fallen on my 2 children and me, with guidance from a 2017 Advance Directive and Durable Healthcare POA.

We have done a few things that have made a difference:

1) Right now we have in place a Bi-Pap for help with his breathing. He completely rejected it when we used the nose pillows and would pull it off. We switched to the full mask and he tolerates that much better. I think the trick for us was waiting until he was very tired before putting it on when he was too tired to resist.

2) We have a Cough Assist machine which we use 2-3 times a day before meals. This seems to help loosen the mucus and phlegm in his throat/lungs so theoretically he can cough it up. He seems to cough easier but has yet to bring up much phlegm to his mouth.  Maybe he is just swallowing it.
3) We also have a Suction Machine to use when/if he brings up anything to his mouth.

Here is the current big decision we are facing.  I would appreciate any advice or guidance:

1) The time is near (within the next 2-6 months I think) for us to decide on whether to have a PEG feeding tube placed. We have discussed this with his ALS doctor, neurologist, palliative care doctor and the GI doctor.  Given my pALS husband’s dementia, they all seem to have concerns about how he would tolerate it because of his dementia. He has pulled out catheters in the past and seemed bothered by the nose-pillow Bi-Pap. From what I’ve been told, the PEG, on average would extend his life by about 6 months.  We’ve also been told that the longer (8-10 inch) tube would need to be in place for about 8 months before it can be replaced by a ‘Mickey’ tube.
We thought  we could use a tightly wrapped abdominal wrap to try and prevent him from pulling at the tube, but we’ve been told that’s not possible.  The GI doctored said we could not use the tight wrap while waiting for a Mickey because 8 months would be too long a time and making it too tight may cause inflammation, irritation or even cellulitis on the stomach area.

We are all in a dilemma about what to do. Any advice or guidance in any area of caring for someone with FTD/ALS would be greatly appreciated.

Leslie

 

 

 

 

[Susan Baker]

We have a wonderful group for those caring for loved ones who are living with ALS & FTD and welcome anyone who needs some support: https://www.facebook.com/groups/906923272655643