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Jackfishem

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Mom was diagnosed with FTD-PPA in early 2014 and ALS a couple weeks ago. She rarely speaks, but can answer yes or no questions somewhat easily.

With mom's limited verbal skills, I am concerned that I may miss things in her disease progression. Mom is in an assisted living facility and is still high functioning. She spends quite a bit of time alone, so I have to rely on information from her to determine how the disease is progressing. I've decided to put together a checklist of questions to ask her regularly. If any of you have done this already or know of a ready-made list on the web, please share.

Here are my initial thoughts for inclusion:

Do you find you have more saliva in your mouth than usual?
Are you drooling more at night?
Are you drooling during the day?
Do you have any problems turning in bed?
Do you have any problems walking?
Did you eat breakfast today?
Did you eat lunch today?
Did you eat supper today?
When you were eating or drinking, did anything go down the wrong pipe?
Did you have any trouble swallowing?
Are you having any problems breathing?
Is it harder to breathe when you are in bed?
Have you been coughing more than usual?

Any suggestions would be appreciated!
 

Jackfishem

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I thought of a few more to add to what I will call the "Journal".

Did she wet the bed during the night?
Did she wet her clothes during the day?
Did she have a bowel movement?
Was she in any pain?

Please let me know any suggestions. I plan to print a bunch and keep in a binder in her apartment. I'll let the staff know they can make notes as well. Sitters and my husband can also use this as a reference tool if I have to work late or go out of town.
 

Nikki J

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Not sure if you will get reliable answers. There is a lot of denial even with PALS without FTD. Those are things you want to know but perhaps more by observation. this might make her angry or defensive. I am honestly not sure I would take kindly to being asked those things daily
 

affected

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It does depend on how she normally responds to questions about what is happening to her.

With FTD they very often display a lot of denial, and are not good at answering questions about progression. You can try this idea, it has a lot of merit, but with FTD may not be what you envision.

When we would go to any appointments Chris would answer questions in ways that would just amaze me as he would say how well he was doing. If I countered with any honest answers he would become very angry with me.
 

Jackfishem

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Excellent input! Maybe I'll just start by asking every few days? My big concern is that there will be a problem that I will miss by only seeing her 30 to 60 minutes a day. I guess my other big concern is the fact that I am an only child and if something would happen to me, I would want there to be some continuity in mom's care.
 

bigmark1954

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JACK.......Many of the things on your list are not FTD specific.
I would strongly suggest you to research threads on FTD. There have been some real informative threads recently.
I think this would be a better method of adding to your "list" than asking for suggestions.
......just sayin.
 

Jackfishem

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I hope this message doesn't post twice -- I tried posting earlier, but then realized I wasn't logged in.

Nikki and Tillie -- I really appreciate your thoughts! Maybe I will try to ask the questions once a week or so? Or maybe a couple questions a day instead of the whole checklist at once?

I have two big concerns. One is that on average, I only spend 30 to 60 minutes a day with mom. I am worried that I will miss something and only realize it when an injury happens. Second, I am an only child and I am concerned that if something would happen to me, mom's care would lack continuity at a critical time.

Please let me know if you have any other ideas!
 

lgelb

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Jack,

The staff should be charting/observing much of this. Build relationships and they should be your auxiliary eyes and ears.

Best,
Laurie
 

affected

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One of the big problems with ALS progression and FTD is the denial of progression.

Asking someone about progression with FTD involved is usually not very productive.

Here is a random example from my experience with my husband:
I will use a question asked by different health professionals with similar wording over a period of several months and then the types of answers given.
health professional - we are concerned because you are still losing weight weekly even though you have a peg. what is your barrier to taking in calories?
Chris -
1. it is inevitable I lose weight because my muscles are wasting
2. they did not look after me in palliative care (he was in the unit for 5 days, was fully mobile and could ask for things at the time, was eating soft foods and had a big load of peg feeds sitting beside his bed. He was in there for a pain management regime to be worked out. he would continue to give this answer for many months after being in there)
3. I eat or take feeds all day long, I can't take in any more (response, let's try overnight slow drip feeding - NO I won't do that)
4. I don't like the formulae (no matter how many we tried, and he refused to have me put real food in the peg)
5. 'she' doesn't give me enough (that's me of course, and the fact was he would refuse more peg feeds than he would accept on any given day)

We would work out schedules and we would all agree on how he would consume and that he would cooperate, then within days he would just refuse feeds again.

The whole time, he was adamant that no matter what we did he would simply have to lose weight because that's what happens.

This was a long protracted reply, but the point is that with FTD you can't really ask a list of questions and gain a meaningful and reliable set of replies.

Sitting down with the care staff and going through the kinds of observations that would be useful to watch progression and do anticipatory planning will be far more productive if the staff in a facility like this are willing to put the effort in. You could make a spreadsheet that they could tick or score with a place to leave notes.

What has her reaction to the ALS diagnosis been like?
 

gooseberry

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Most pals don't want to discuss anything related to progression. Some will, most wont. I observe and watch and get most of the answers to the questions you are asking.
 

scaredwifetx

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I totally agree Steph. Steve will not talk about progression and does not realize he has it.
 

Jackfishem

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Thanks again for all the input! I appreciate you taking the time to let me know about your experience!
 
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