things we learned today

[gooseberry]

The assistive speech tech person just came in to see Steve. She helped us set up google voice command and showed him how to use speech to text features. He has an android tablet so it is a little different. This will really help since he has great difficulty typing.

 

[Buckhorn]

- Affected/Tillie. Bucky is fine ....... I've been called worse! Thank you so much for the encouragement/info regarding end stage comfort. My husband (Dave) and I have at least talked about his fears of choking or "drowning" at the end. That is his biggest fear. He does not talk to me much about other worries (dependency for everything - showering/bathing, toileting, mobility, loss of speech, etc.). He and I are very different in temperament. I plan ahead for everything; I guess it helps me feel I have some measure of "control" (so laughable to say that regarding ALS). I THINK Dave feels he does not want to ruin today thinking about tomorrow. I can appreciate that, so I keep most of my thoughts, research, etc. to myself and have the support, encouragment and education that this wonderful forum provides.

 

[affected]

Steph these updates are giving me an amazement for how the VA are putting these reviews together.

 

[gooseberry]

The latest....condom catheters work best with something called skin protect. It helps the condom portion stay in place. It looks like an alcohol pad that you would wipe on the penis before putting the condom portion on.

 

[gooseberry]

Our VA is pretty amazing when it comes to ALS. There are currently 14 als patients in the unit. They usually have no more than 3 or 4. We have had to give some direction after a few mishaps...for example a small plastic pitcher with water and a straw. Steve has dumps it every time he uses it. They brought him tiny diameter straws. Had to let them know when it is tough to breathe, you need a wider diameter straw. These issues have happened because usually there is a core of 5 nurses and aids with the specific respiratory tech, and pulmo and neuro. But with all the extra patients, more staff is needed.

Today Steve saw the assisted technology speech path, dietician, psychologist, palliative care doctor,pulmo,neuro nurse practioner, kinesiotherapy tech who trained me on the hoyer lift and a nurse who showed us how the condome cath works. I took a tour of the hospice unit. They are all private rooms with couches, hardwood flooring,etc. There is a family kitchen on the ward. I had to see it so if we needed it, I knew it would be okay.

We ended our day with the pulmo sitting down with my son and answering all of his questions after 5 pm.

We are very lucky to have such a responsive VA team.

The pulmo told my son that anything he finds article wise he thinks is important to please send it to him. Julien has done this a couple of times and the pulmo said he has learned things from them.

 

[affected]

That is so much to get through in one day, my mind boggles trying to imagine it!

How lovely that Julien was given encouragement to both do his own research, but then to share it with this doctor. Damned impressive!

I hope you can relax with a drink at the end of today!

 

[gooseberry]

I had 2 Tillie

 

[affected]

GOOD! 1 will have only taken the edge off all the energy spent, and the second will have been very necessary to enjoy having a drink!

 

[gooseberry]

The first went quickly. I savored the second.

 

[affected]

Yep I've found a quick first drink can do wonders, then a second long slow drink is just divine

Usually a third for me is a mistake however much it seems a good idea at the time :lol:

 

[4tloml]

Steph, thank you for sharing the tremendous wealth of information you've earned this week. The way the pulmo worked with Julian brought tears to my eyes. I have a special guy of my own (my youngest son) and know the profound difference that time and encouragement can make. And yeah to Grandma for helping out!

Has Steve been "in-patient" all these days? That seems hard, and yet a thorough way to evaluate and effective way to learn so much with time to question and absorb (instead of everything thrown at you in a 3-4 hour clinic). Do you think it has been worth the challenges that have come with the stay?

Becky, glad you're safe. Hoping all our friends in Virginia (esp Appomattox area) are OK today, too.

Tillie/Becky, day at a time. If he still wants to go Tuesday, we will; if not, we won't. I already know what I see. When he said he didn't want to know the results, I asked him if he wanted me to know. He said, "Yes." I asked, "Then if the tests indicate you have FTD, you would want me to know that and keep it from you?" He grinned really big and looked like a kid who'd just gotten caught and said, "I guess not." I think any of us facing the possibility of news like that would feel ambivalent about knowing. And I think he wants me to protect him from the harsh realities as much as possible. He's already made that clear. From the beginning, he's wanted me to do all the research and reading and only wants to know things on an "as needed" basis.

 

[gooseberry]

Yes he has been an inpatient. We just got home. On Tuesday, Wednesday, and early Thursday they evaluate. Then the team meets Thursday for lunch and discuss the eval results. Then everyone comes back before you leave.

For instance, we saw the ot yesterday. Today, another ot came and said the recommendation was for a transfer board and transfer sheet. It has handles for turning.

The neuro nurse practioner had noted his blotchy red dry skin. Ketoconazole cream 2% and a shampoo have been ordered for him. She noted that this cream really helps the skin in als patients. PT fixed his chair headrest, ordered a roho back and reflector. Then he commented on the scrapes on the chair. I told him he cant see to back up. They are getting him a backup camera and mount for the screen. Smarter than destroying the trilogy that is on the back.

So everyone uses each others info to brainstorm what you need. An electric portable hoyer is coming Monday.

It is exhausting for me, steve sleeps well at night. Go figure The clinic at usf has become a test of patience with out any real assistance. We get the most help, and best help with the VA.

 

[4tloml]

That extra time to observe seems to yield some really valuable tools for you and Steve. What a great team! It must feel like you really have someone working on your behalf.

Glad you're home and hope you all get a great night's sleep. Again, thanks for sharing what you've learned with the rest of us!

 

[Ells]

Goose, even though it's tough on you both, what a fantastic service!
To have problems identified and solved! in one fell swoop is great.

Hope you slept well.

 

[gooseberry]

Steve is still sleeping and I slept well. It is nice to have all the issues solved at one time. The electric/battery, portable hoyer comes Monday, Things get ordered set up so it is really great in that respect.