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soakland

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Apr 24, 2016
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Learn about ALS
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US
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FL
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Cape Coral
I have been experiencing weird interactions with my family, both for those that live here with the PALS and me (CALS), and outside family members. We are Christians, and it seems that no one understands that I need a break. It seems so odd. Thank God I only work once a week and I have a lot of time to do things, but I still get exhausted, emotionally and physically. But family just doesn't understand. It seems like I am in this alternate universe and no one but those inside it can understand it. No one volunteers to help at all....nor will they give me advice on how to get time to myself. They think I am selfish or overreacting. They seem to forget that I (the CALS) am human too. Same with my PALS. Going from 6:00 AM until bedtime every day with no break. Not only do I care for my PALS but also my 95 year old father. He just needs light stuff like meals and the like. But I am finding that people just don't get it at all. They say "make time for yourself", but how? My father hates it when I leave, and I have a caregiver button for him and my PALS keeps FB messaging me if I go out. I feel trapped. Any advice?
 
Scott, have you inquired to see if hospice will take one of them in-patient?

If your wife goes off her meds, she might cause an unfortunate incident.

You might have to get a court order to place one of them against their will.
 
I'm not sure what the reply has to do with the thread, but she isn't quite ready for hospice and doesn't want it. She's good with meds and stuff as she is a former NP. Thanks anyway, Mike.
 
Hi soakland,

I totally understand your need for a break and you certainly are not being selfish. I am the sole caregiver for my PALS and he requires a great deal of care. I contacted my local ALS Association and applied for a respite care grant. You must use an agency to provide the person to come to your house and the agency that I have requires a 2 week advance notice and a 3 hour minimum. See if your ALS Association can help you.

Sharon
 
Hi Soakland,

I second what Sharon has said. I too am sole caregiver to my husband and I too have a small grant from the ALSA. It's not a lot, but it definitely helps.

If it's any consolation, we too are christians and nope, family doesn't get it either. His mom does, but at 82, she can't stay alone with him anymore. His sisters and brother are of no help either. My brother offers up my SIL, but she hasn't herself.

Also, your ALSA may also be able to give you a name of a facility that could maybe take your PALS for a couple of days. Unfortunately, here where I am, there is a faciity that can handle my husband with both ALS, and a vent. However, that is not the case everywhere.

Hugs,

Sue
 
What I noticed is that many people miss the point that nurses for example work 8 hour shifts, then totally get away from their patients, then they get days off on a roster and they get holidays.

Any one person in a hospital setting has a team looking after them.

When you are alone at home doing it 24/7 you are at risk of burn out after only a short time, and it's mathematics it's not weakness!

I would encourage you as have Sharon and Sue to see what services you can put in place. Don't wait on family to step up to the plate, and don't expect them to understand any of it.
 
I hate to say it but you are on your own. Family is often unhelpful at best. Make your plan. You say you are Christian. Do you attend a church? Can any members start a meal train for you, a shopping helper, someone to sit with your pals while you get out? What about coworkers? Do you have neighbors? Can they help? ALSA does offer the respite grants but so do other local agencies, sometimes for free.

What can be accomplished online to save you time. Can you bring your dad to your place so you arent running back and forth? What about someone 10 pm to 7 am to see to their needs so you can rest? Take anything anyone offers....cleaning, company,shopping, whatever. Accept it all.

I would send an email out to all of the family asking for help. I would list a specific set of jobs and days....and see who can help. Explain the need and if they dont understand it, train them and take a coiple days away for you. They will catch on quickly
 
Soakland how are the issues with her FTD going? Did you get all those other problems sorted? Some great ideas coming in here that I hope will help.
 
I forgot to add we have a respite grant. Problem is the PALS wants to use it for a caregiver when I work. So it's not really a respite. She insists. I also should add my PALS also has bipolar disorder, which is under control. She never had FTD, I was mistaken when I stated that months ago. Thanks.
 
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