CALS Roll Call Continued

[Mary2]

This week Paul's caretaker has been ill. It was either last Wed or last Thursday I was out of the house. PALS is doing okay and seems in okay spirits. He listens to audio books on the computer and sometimes listens to political podcasts which to me can be so biased I can only listen to him tell me about them a little bit. He is doing better than I would if I had ALS. I would probably withdraw from world events and read fiction.

 

[rmt]

Mary, I hope your caretaker gets better fast! It must be so hard when you don't have any help.

The excitement for us right now is that my husband hurt his foot. It has been painful and bothering him for a couple weeks and then this weekend it swelled up and looked bruised. Because of his communication issues, I'm not sure how exactly he did it. He didn't fall, as far as I know (and he doesn't have any other bruises). Maybe he stepped on it funny? Or twisted his ankle? He doesn't remember hurting it. Who knows! Good news is that it isn't broken. But he is hobbling around and I can tell it hurts. I suggested he try a cane or walker, but he refuses. The swelling is already going down so hopefully he will be back to normal soon.

We decided to take a break from the gabapentin to see if that was what was causing him to be more zombie-like lately. He was so out of it and sleepy all day, not just at night when he took it. Yep, that was it! So he's back to being more alert and interactive, which is great. And his breathing seems back to normal too, which is a relief. But unfortunately his restless legs are back (and the hurt foot isn't helping!) so he isn't sleeping as well. Back to the drawing board to find something else for his restless legs!

 

[lgelb]

Of other drugs used to treat RLS, given his conditions, I would ask about a rotigotine patch, worn for 24 hours.

 

[rmt]

Thanks! I'll ask about the rotigotine patch! I really appreciate the suggestion!

 

[vltsra]

Checking in...we're still here. Our nighttime caregivers seem to be on a revolving door. I have to retrain them periodically. Broken sleep again last night.

We decided to call in hospice after all to see what they can do for us. I think we need some hands on support and my PALS needs counseling, both psychological and spiritual. I suppose we can always decide we don't need them.

V

 

[Mary2]

RMT, I hope your PALS' foot heals well and that the RLS can be treated.

V A good hospice team should give you and your PALS some support. At least you both will have a nurse to talk with on a regular basis and hopefully a spiritual counselor and social worker. I am curious to know what they say about the bi-pap. Will they continue to provide respiratory supplies and a respiratory therapist or the pulmonologist? I admire your PALS for agreeing to looking into hospice.

 

[Mary2]

Pals is going along okay. Our caretaker has not been able to work much and the agency is sending a substitute tomorrow. I am ready to get out of the house and do some errands and maybe have lunch. The weather has not not been great either.

 

[rmt]

My PALS foot is slowly getting better. And both of us have been in a better mood lately with the sun coming out more. I'm really trying to just focus on enjoying our time together and not get upset by all the things I can't control. I did pretty well this week (last week I did not do as well).

We had a speech therapy appointment for them to assess his aphasia. He handled it very well, and it was very interesting to see what he answered correctly and what he got wrong. It is helping me be more patient when we are trying to communicate. Friends and family reached out to me after Bruce Willis announced he has aphasia, and it was exciting to think there was going to be more understanding of aphasia with all the publicity. But the more I read, it sounds like what Bruce really has is some sort of dementia (maybe FTD, that is causing aphasia and other issues). I hope they will address that diagnosis and bring more light to dementia and all the struggles it brings.

My husband has his 4 year EMG coming up next week to find out if he still has PLS or if it is now ALS. We are both very nervous. But we will deal with whatever we find out.

I found out today we qualified for the VA Caregivers program. If you are a caregiver for a veteran, you should definitely look into the program. They provide respite care, other services and support and a monthly stipend! The application process was quite easy and it is absolutely worth the effort.

 

[rmt]

Mary, I hope you can get a good replacement and get out of the house. I'm sure you are very ready for a break!

 

[vltsra]

Mary I hope you find another caregiver. Taking time out for ourselves is so important to maintain our strength and stamina as caregivers. Robin the VA program sounds great! Wish there was something like that for civilians.

Well so much for hospice. They came out and seemed very experienced, especially with ALS patients. Unfortunately, while they will cover the bipap and equipment as a palliative measure, they told me the tube food and feeding supplies would not be covered. We're looking at $450 a month. That's Medicare for you.

We have decided for now to go on as we are. My PALS probably has way more than 6 months to go. The nurse and I did have some discussion about what would happen if he were to decide not to continue, which has been on his mind as things get tougher.

The visit also opened up some discussion between us about difficult subjects. Over a year ago he filled out an advance directive but it contained a lot of wishful thinking. I feel he has moved closer to acceptance at this point and he told me he wants to be dnr. I want to make certain I clearly understand his wishes.

So we go on.

V

 

[lgelb]

V, the tube stuff should still be covered by regular Medicare, just as it is now. The hospice gets a set monthly amount for the ALS-specific (palliative) care. They do not assume financial risk for all his care, e.g. Medicare still pays for say, a blood pressure med, diabetes care, etc. Did they tell you something different?

 

[vltsra]

Thanks Laurie, yes they told me his food and supplies would not be covered. I have a follow up with palliative care and will talk with them about it. He still wants to continue so it's probably not 6 months in any case.

 

[lgelb]

Maybe they misunderstood and thought they were talking about whether hospice itself pays for the tube supplies, which the answer is indeed no. Lots of PALS on hospice have feeding tubes.

The hospice eligibility process for ALS is a little different than for a brain tumor, and eligibility can be renewed at intervals if the PALS exceeds the on-paper prognosis. Don't let that keep you from signing on if it's an agency you like and you want to take that direction. Your doc will know how to write the order, and the agency's biller can help if needed.

 

[Dot Nichols]

My heart breaks as I read the sad events. I am sorry for what this disease does too our PALS and their families! I have a question about support bars over the toilets.... Can anyone recommend one that is more stable? My PALS is reaching for the shower door handles, which is not good, so I'm looking through the options. Thanks!

 

[lgelb]

A toilet riser may help more than a grab bar, so he doesn't have to go up and down as far. One example is called a Tall-Ette. Of course, that depends on having a few inches around the toilet for placement.

Otherwise, mounting a bar on a regular wall (i.e. not a shower stall where a top-tier suction bar may be possible), you are going to need to drill so then it becomes more a question of where you put it so he can grab it easily, preferably one with texture or padded so it's easier to grasp with less force.