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Narrowminded

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Sooner - bummer about missing lunch, but nope don't want that at your house.

Hugs,

Sue
 

soonerwife

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I HATE FTD!!! I just removed Instagram and FB Messenger from Cliff's ipad... I told him the next step is taking the ipad completely!!! I HATE THIS! I HATE THIS! I HATE THIS! I am completely heartbroken again...
 

KatieNBoyd

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Oh Sooner,

You are writing just the same things I went through with Jon. I still run into people that I have had to make amends to.
I got more disappointed when I eventually went through his emails as well. I wish I hadn't.

The computer was the only thing he did so taking it away or locking it down just made it worse and created anger and animosity.

Stay strong. I will send you virtual hugs and strength.
Katie
 

affected

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I'm so sorry Sooner.

How horrible is it when I say - I was relieved when Chris lost use of his hands and just used his technology to listen to music or movies or read stuff :(

You are not going to get any arguments here - I HATE FTD too!
 

Narrowminded

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Sooner I am so very, very sorry. Major huge HUGS coming your way. Know I'm praying for you.

Sue
 

soonerwife

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My DD stayed the night last night. I was too tired to meet anyone lunch today. I did manage to take a 2 hour nap this afternoon. So nice to have uninterrupted sleep. Then I went and got a pedicure, I took my DGD with me, next time I will go alone, lol!

Cliff seems to be the same for a while now. He has some trouble spots on his upper neck which is skin to skin. Not being able to keep his neck up is really causing some issues.
 

scaredwifetx

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I am so very sorry Kim. Hugs!
 

affected

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Many hugs and thinking of you sooner xx
 

soonerwife

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I have been somewhat frustrated with the hospice aid. I told her in the beginning that mornings work best for us. Pretty much all of Cliff's personal care happens in the mornings. She tells me sometimes that she will be here in the morning and then when it's time for her to come, she texts that she can't come until afternoon. Monday, she called at 5:15 and wanted to know if she could wait until Tuesday morning. I told her that wasn't a problem thinking she would come first thing she we missed Monday, she shows up at 11.

Today when she messaged me that she couldn't make it until afternoon, I asked if anyone else works this area because I really need help in the morning. Five hours later she responded that she would ask the office.

Her boss called at the end of the day and told me she would try to figure something out.

I honestly am more frustrated that she says she will be here first thing and then changes the plans when it's time. I told her boss today that my main problem is that she says she will be here and I am depending on her help. If she tells me she can't be here then I will arrange for my daughter to be here.

Hopefully something will work out... I will look for another hospice if they can't meet our needs. Honestly, I haven't been thrilled from them from the beginning. From it taking 5 weeks to get the trilogy to the aid not doing what she says.

We also received amitripyline this evening. I asked the nurse about it a week ago. I read that it helps with excess saliva, helps with sleep and also can be prescribed for FTD?! I had completely forgotten about asking for it. I never heard anything back about it. Tonight we get it and I have no idea if we are supposed to continue with what he is already on or stop some things? Guess I will call tomorrow and find out?!

Maybe I am just too picky about things?! Didn't even realize this was going to be a rant until I started typing.

It's 11:20, better get my rear in bed.
 

Narrowminded

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Sooner - HUGE hugs. Since i can't have hospice, I'm not great at giving advise other than if they are not meeting your needs, move on. I don't believe you should have received a drug w/o a nurse being there to explain how you are to use it and if it would interfere with anything else he is already on. Are they using the pharmacy you always used? If so, you could call the pharmacist and ask. That shouldn't be your responsibility right now, but I'd do it since you are not getting the proper help.

I hope when you spoke with the boss, you definitely explained that your problem is more with times not counting than with the help. Yes, mornings are the hardest times. It sounds like maybe that hospice doesn't employ enough aides as I imagine mornings is the toughest for most people. I don't think you are being picky. It's hard when we expect help and then don't received it, esp if it was said we would.

I might call that second Hospice you were planning to talk with and get them out. Explain what you feel you are missing from you current and see if they seem to think they could do better. If they say they can, remind them you will drop them like a hot potato if they are just blowing smoke.

I hoping today is better for you. And no I don't think you are being too picky, unless they said upfront that they could not guarantee times. And the med, that's not being picky at all.

Hugs,

sue
 

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Definitely check out all other hospice options straight away and let them all know you are the customer and you are going to choose what will work for you. Particularly let this one know you are shopping to leave as they are not performing.

I can't understand so much about people in this world, don't start me, but I couldn't sleep at night if I did what that worker is doing!

With any luck this will shake this mob up to perform, or get you a service that will do what they commit to.
 

pittsburghgal

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Sooner,

You are not being too picky. What you are requesting of hospice is totally reasonable.

When Frank had home healthcare after leaving the hospital 2 years ago, I had the same problem. I needed the aide to come early in the morning to help with bathing and getting him out of bed. She wouldn't come until 11- 12 AM which was useless for us so I did it myself so he could get out of bed and in his chair. The aide would come to shave him and this would take a full hour. I can do this in less than 5 minutes. I cancelled the homecare because it was not helpful.

Hope you get better results from your hospice or can find one that will better address your needs.

Sharon
 

soonerwife

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I am supposed to be getting a different aide that can come at 8 am starting next Friday. I am hoping this will be better. I hope she is good.

Cliff's RR rate was running from 11-16 BPM today, down from this normal 16-20. Makes me wonder what is going on?
 

Narrowminded

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Sooner - I can't say that it's not a sign, but Brian's vent is set at 14. Initially they set it at 12, but he needed a bit more, so it's not out of normal range, unless you hear definite missed breaths (apnic events) They are very noticable because his breathing would have a pattern and then you'd definitely hear a change. Also, just lying in bed, there isn't much exertion going on.

Hugs,

Sue
 

soonerwife

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That's good to know Sue! I am glad it's within normal range. It is just different for Cliff, he was always between 16-20. When the nurse was here yesterday trying to get his RR, it was like he was holding his breath a couple of times. We both looked at each other like what the heck? I said it is like he is holding his breath. She asked if he was and he said no.

Seems like his RR is sitting at about 14 this morning.

He hasn't had a bm since the 30th. I gave him a full dose of Miralax last night which usually takes care of it, but nope not this time...

He started a couple of meds this week, tramadol and amitripyline. Maybe one of those are causing him bm problems. Gonna up his water today and another full dose tonight.

The dog got me up 5 times again last night along with Cliff two times. I am exhausted and we are having a 2 yr old b-day party for my grandson here at two. My house is a disaster, still have to decorate the cake and I am just sitting here. Ugh! Better ger something done.
 
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