CALS Roll Call Continued

affected

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I agree that since your mod needs are not immediate, take a few weeks to think it through carefully and do the paperwork in sections. It makes sense to get things going now so you don't have that overwhelming task in crisis, but a few weeks is more than reasonable.
enjoy the games, it's great to have them to share
 
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Mary2

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PALS and I are from the Boston area and we love the Red Sox...except when they play the Braves. Then I route for the Braves.
Could happen this year!
 
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Mary2

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Meant to say Root for the Braves! The wedding details are getting intricate. The college student we hoped to have help with PALS at the wedding has a job and won't be able to help us. Therefore, we are going to have to use a service we have never used before 2 hours away from the house. The hotel is 40 minutes from the wedding because the wedding is rural. We are going to hire an LPN for part of the week end to ensure we have someone with some skills and then the rest of the time I will stay with PALS. Problem is I will have to leave PALS at the hotel with a brand new worker while I go to the rehearsal dinner. And the couple has to have the rehearsal dinner 40 minutes from the church because I can't be 40 minutes away from PALS. I am trying to stay centered, but I am stressing over this. I am just counting on that by getting an LPN he/she will have some skills....but that doesn't mean they are comfortable with a hoyer lift. We will go up Thursday night and hopefully meet them and go over the hoyer lift. Thank you for "listening". As you recall the wedding isn't until May. The service wants to be contacted the beginning of April.
 

lgelb

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Mary, maybe I'm missing something, but why can't your PALS go to the rehearsal dinner with you? I'm sure you could find him a parking spot safely out of traffic flow but still able to see and be seen, just like at a concert, and also he could wheel through the room at some point. There are also lots of ways to stage a dinner besides cheek-to-jowl formal seating. As for dressing up, my husband went plenty of places with his lower half concealed under a blanket, a dress shirt and Propet Cronus slipper shoes his only visible clothing.

You've mentioned that he's using a diaper -- is that because of incontinence?

If he feels awkward about it, there is time to stress-test the concept at another event. I am presuming everyone will be vaxed/masked based on local conditions.

As for using an LPN, CNAs are trained on Hoyers, so I don't know why you would need an LPN just for that. I would certainly not want anyone to learn the Hoyer in a trial by fire -- kind of a safety issue. I would be clear with the agency as to what you really need.

My husband was not social at the best of times, but I know he never regretted showing up wherever he could, all the way through. This is a one-time deal and you don't need speech to connect with others in a room, at a joyous occasion.

Best,
Laurie
 

Mary2

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Hi Igelb,
The PCA we have now is fearful to use the commode by herself. I only go out after my PALS has used the commode. She is great at housework and she is vaccinated. I am not even sure the agency would approve of their employees using the Hoyer lyft. My risk tolerance says to take a chance on an LPN rather than a PCA or CNA. PALS may also be using g tube by then and we may want medications given. PALS won't go to the rehearsal dinner unless there is a commode and hoyer lift and if he is in a diaper a bed available. We plan to have a tent with these items at the wedding. Currently he is independent at using a urinal during the day and a diaper at night. When we go out he uses a diaper. The vaccination rate in this county is under. 50%. By May I believe he will need assistance using a urinal and currently I have to put his pills in his mouth. Thank you for taking the time to respond to my concerns.
 

Mary2

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I mean the PCA is fearful to use the Hoyer lift by herself.
 

affected

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it sounds like it would be less stress (but more expensive) to train someone where you live and take them with you? I don't know if that would work, just throwing it in.
My husband had many issues about certain kinds of interactions or outings, I totally get it.
 

lgelb

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Many PALS can go out with a portable urinal (we used the UriBag) if their BM is done for the day, especially for an hour or two. Virtually anyone that he knows can take him into the restroom with the urinal; that does not require a caregiver or a Hoyer. Liquid or crushed meds, or tube feeding, if required when you are not available, does not require a complex education, but of course you will want to know it's being done right. It is much more important to have someone willing and careful than with a particular credential, as with most of the help PALS may need.

I agree that since you have time, it is better to train your own help, even family, rather than relying on the agency to find someone good, especially since it sounds like this will be a stressful while joyous time. Most home health agencies and providers are understaffed and there is no evidence that things will have improved significantly by spring.
 

Mary2

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Thank you Igelb and Affected for your comments. I booked a hotel room for the caretaker in case we bring someone with us. We are more relaxed now and will re-evaluate again after Christmas. We are having a good week. PALS and I listened to an audio book and PALS is watching a history series. I even found time to stain the deck.
 

affected

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Oh Mary, it sounds like you had a week that brought a little balance, I'm so glad.
 

Mary2

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On Thursday, our personal care assistant notified us, that she could no longer work her hours. We weren't given a reason why not by her or by the agency. The agency said it wasn't because of us. So someone new is coming on Tuesday. This person has been vaccinated. Maybe they will be good with the Hoyer Lyft so I can resume my morning walks and swim at the pool.
 

affected

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I have every single thing crossed for you Mary - if she doesn't know much about the lift, hopefully she is a good learner! You deserve to get respite when paid staff come for sure.
 

rmt

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Mary, I hope your new caregiver works out well!

It has been a pretty good week. More hugging, less crying (for me, my husband almost never cries). I feel like we are connecting better, even as his expressive aphasia gets worse. I'm getting more patient with how hard it is for him to not be able to express himself and he is more thoughtful about how challenging it is for me to not be able to understand what he is trying to say.

He got a new mouth guard today to hopefully help with his cheek biting. He thinks it is too bulky, but the prostadontist says she can modify it as needed. She was lovely and very excited to work with us to get something that will work for my husband. We go back in a week so she can modify it as needed. So the plan for the next week is to wear it as much as possible to figure out what he wants changed.
 

affected

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I hope that guard makes a big difference for him. Please let us know over the next few weeks.
 
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vltsra

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Mary, hope your new caregiver works out for you and your PALS. A caregiver for an ALS patient needs to be able to use a hoyer lift. It's pretty fundamental. Ours uses the lift and can feed my PALS thru the feeding tube as well as changing bipap masks.

I had such a lovely visit with my family. I hadn't seen them in 3 years. They were so supportive and understanding and could see how very difficult this has become. I cried when they got here and cried when they left.

Have been very worried about the bedsore on my PALS' backside. Last night it looked worse to me, not better. I got up every 2 hours to change his position. I'm asking the nurse to come back as well.

Meanwhile life continues. I had to deal with a bad plumbing leak that destroyed the baseboard under the sink. The plumber's restoration guy told me I am looking at thousands of dollars. My husband's contractor friend came over and said he will take care of it. He hadn't seen my PALS for 2 1/2 years. It was quite an eye opener I'm sure.

My PALS says he wants to keep going. So here we are.

V
 
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