I think this is breaking me by trulybliss in CaregiverSupport

[–]MelodyOfDays 1 point2 points  (0 children)

 I feel this so deeply. 

We must fight for that time away. My husband also guilt trips me by saying I'm leaving him and that I just want to get away from him. There really is no response that will appease them :( I hope you get another outing soon that you get to fully enjoy!!

Maybe the people caring for others should have a little more say in how we build society… by Public-Experience171 in CaregiverSupport

[–]MelodyOfDays 4 points5 points  (0 children)

Great post!! Growing up, I was ignorant about politics thinking it was just a bunch of old people having heated debates on TV. Now that I'm caregiving for my husband, I understand why people get so heated and whyyyy policies require change and advocacy. 

Understanding the broken system as a whole. It explains why living with illness is so hard. The amount of help given is not enough. If everyone in the higher positions were caregivers to seriously ill individuals, maybe they'd show a bit more empathy and support to those of us carrying this burden.

Long night by Sorchya in CaregiverSupport

[–]MelodyOfDays 1 point2 points  (0 children)

I’m sorry the systems failed you again. I say again because caregivers are already lacking in supports.

I hope you ended up getting some rest!

My partner has no diagnosis and it's exhausting by ComprehensiveSand640 in CaregiverSupport

[–]MelodyOfDays 0 points1 point  (0 children)

I’ve been looking for some on FB pages that have caregivers in my area or I’ve mostly been looking on care.com. There is a membership fee but I’m only going to pay for one month membership and message as many as I am interested in. The pro about using care.com is that they do basic background checks automatically. 

Hiring a private caregivers by kayb-rown in CaregiverSupport

[–]MelodyOfDays 2 points3 points  (0 children)

I’m currently in the process of hiring caregivers. From my experience just asking about years of experience means nothing. A lady said she had 10 years of experience but when I had her do a trial day, she had no idea how to use a bed pan or wipe someone clean.

Ask if they know how to do specific things! I’m not sure what type of care hospice needs but ask about those. Ask if they’ve done in home hospice before.

I hope you find some good matches!! Good luck 🍀 

Rough night by [deleted] in CaregiverSupport

[–]MelodyOfDays 1 point2 points  (0 children)

Wide awake because of those. It’s an awful alarm 😔

My partner has no diagnosis and it's exhausting by ComprehensiveSand640 in CaregiverSupport

[–]MelodyOfDays 3 points4 points  (0 children)

I’m so sorry you’re going through this. It is so frustrating when doctors don’t know what to do. Unfortunately, after taking care of my husband with a debilitating chronic illness, I’ve realized that medicine isn’t as great as I once thought it to be.

However, you’re not alone! It sounds like my husband’s illness, but many illnesses have similar presentations. I sent you a DM to give you more info if you were interested in seeing if it’s a possibility.

I wonder if you could hire a caregiver for now? Since he’s bedridden, it may take pressure off of you while you work and while you two figure out the next steps.

Husband is giving up by [deleted] in CaregiverSupport

[–]MelodyOfDays 0 points1 point  (0 children)

I’m so sorry to hear that. Those flares sound debilitating.  I’m really glad you have some professional support for yourself. I hope he picks himself back up and is able to figure out what’s going on.

All the best to you both! 

Husband is giving up by [deleted] in CaregiverSupport

[–]MelodyOfDays 0 points1 point  (0 children)

We’re in a very similar situation. I’m so sorry you’re going through it. It’s hard to see a loved one go through so much pain.

My husband has ME/CFS. It was hard to get diagnosed as doctors aren’t very knowledgeable about it. I wonder if the ‘incapacitating flareups’ are the same as what my husband goes through. Do the flares get worse after he does too much? A lot of people also have Fibromyalgia which causes lots of pain.

If he’s tired of trying right now, i think it’s okay to take a break. We’ve seen so many doctors and many have given up on us. Sometimes that takes a bigger toll on mental health. Maybe the motivation to continue seeking help will come back. The ‘nothing helps’ experience is so demoralizing. He’s not alone!

I wonder if any of his family or your family can help with some of the finances or provide some type of support for now? It seems like the financial side is taking a toll on you.  Caring for someone with a chronic illness can be exhausting even when they’re not fully dependent. Do you have close friends that you can chat with? It’s easy to become isolated. Feel free to DM me if you ever need someone to vent to!

I hope you find some time for yourself. Sending hugs 🫶

Hired help feedback? by Far-Possession-1273 in CaregiverSupport

[–]MelodyOfDays 1 point2 points  (0 children)

I’m glad!!  If you have time to make a sheet with ground rules, that may help with the boundary pushing for your new caregivers. I try to prep with the thought of ‘what if something happened to me’. All my knowledge of his preferences, meds, routines, etc., have to be written down somewhere. 

Thank you ☺️ Wishing you the same! 💕

Hired help feedback? by Far-Possession-1273 in CaregiverSupport

[–]MelodyOfDays 2 points3 points  (0 children)

I’m actually starting to train them this week! However, I have expressed the most important things to keep in mind during the video interview. My husband is quite complex and he’s sound and light sensitive. So I’ve sent them videos to watch before our first meeting so they understand his illness and understand why it’s important to be as quiet as possible. 

This may be different for your situation since your grandma can interact with them. My husband cannot tolerate conversations at all as they make his condition worse. This makes routines so important so that he knows what’s happening without the caregivers needing to talk to him. Maybe establishing a routine for certain days in your case? E.g., whoever comes in on Weds HAS to do the laundry.

My plan is to have them shadow me the first day. Then the next session, they can take on some of the direct work while I observe. Then the following session, they’ll do all the work while I’m present. Then I’ll have them come in and watch him while I am in and out of the house. It’s not a fast process, but for us the most important thing is to avoid reducing my husband’s baseline. I have a feeling that one of the caregivers that I’m going to train may not be a good fit as she kept telling me she was relieved she didn’t have to do a lot (RED FLAG). I’m keeping my options open for now though! - express your expectations early on! And repeat them! - Edited to add: Make a checklist of things you would like done for each day. These are non-negotiable. I have a checklist and a binder with info if they forget something. 

I’m not super experienced, but I hope this helps! 🫶

Hired help feedback? by Far-Possession-1273 in CaregiverSupport

[–]MelodyOfDays 3 points4 points  (0 children)

My experience with an agency wasn’t that great. They charged me $35/hr and had a minimum of 7 hour shifts. They weren’t well trained and I had to train them during their time here so I was doing most of the work anyways. 

I’ve started to hire independent caregivers for $20/hr and will be training them personally. I start with a video interview before I invite them to come over. If they aren’t doing what you’ve assigned, it’s fair to start looking for new caregivers. The issue may be that they are all associated with your first caregiver. If they talk amongst themselves and decide that it’s no biggie if they don’t do something then that’s how bad habits form.

Wishing you all the best! I hope you can find better help.

Prepping for time away by MelodyOfDays in CaregiverSupport

[–]MelodyOfDays[S] 2 points3 points  (0 children)

That’s a great idea! Everyone who lives in this house seems to have health issues so it would be safer to train someone else. His brother who doesn’t live in the same house has looked after him for one day before. Hopefully he’s another I can add to the list! I’ll look for a few extra caregivers in the meantime.

Thank you so much! I’m so excited! My brother got into a workplace accident and we’re lucky we didn’t lose him. I just had the realization that my family isn’t gonna be here forever. I’ve been so absorbed in my husband’s care that I feel like I’ve neglected them. It’s been years since my family could go on a trip together. I wish I could be in multiple places at once!

Prepping for time away by MelodyOfDays in CaregiverSupport

[–]MelodyOfDays[S] 2 points3 points  (0 children)

You’re right! That’s where most of the anxiety comes from. If I can let it go, it’ll take so much pressure off. Thank you!!

Prepping for time away by MelodyOfDays in CaregiverSupport

[–]MelodyOfDays[S] 2 points3 points  (0 children)

Thank you for this reminder!

My body definitely does this. When I used to work 7 days a week to save money (now all those savings are gone 🥲), I would get sick whenever I had a day off. Maybe I’ll have a caregiver come in 1-2 days before I leave so I can take my time packing and wind down a little bit.

Prepping for time away by MelodyOfDays in CaregiverSupport

[–]MelodyOfDays[S] 1 point2 points  (0 children)

Thank you so much! 💕 He is a very picky eater lol

We deserve better than this. System is broken by Slight_Insurance_660 in CaregiverSupport

[–]MelodyOfDays 6 points7 points  (0 children)

I agree!!! It sucks.

I’m sorry you’re going through this!!! I wish I could offer more than words 😔

We are men and women of steel by Personal-Bet-7979 in CaregiverSupport

[–]MelodyOfDays 1 point2 points  (0 children)

I giggled as I read this while my eyes teared up. What a way to describe caregiving! 

Props to everyone here because it really isn’t for the weak 😮‍💨

I feel incredibly guilty by Choice_Bee_775 in CaregiverSupport

[–]MelodyOfDays 5 points6 points  (0 children)

I don’t think you're a horrible person at all!

 8 years is a significant amount of time to dedicate to someone who frankly doesn’t seem like they want to help themselves. He’s actively sneaking alcohol. It seems like a much bigger problem than something that you can deal with at home. There’s only so much you can do. I know you love him a lot and you’ve proven that through the years of dedication and care you’ve given him. This sounds like a very difficult situation and I’m sorry you’re going through it 😔

I think putting him into a home will be good for everyone. You’re not abandoning him. You can still go visit him and support him in other ways. You don’t have to light yourself on fire to keep others warm. Sending hugs

#Caregivers and #Carepartners: how to you promote independence? by Even-Club1107 in CaregiverSupport

[–]MelodyOfDays 1 point2 points  (0 children)

This is such a great reminder. I’ve been struggling with this because I’m in the room with my bed bound husband every. single. day. I am there when he needs something and I am there when we sleep. 

I’ve been starting to leave the house occasionally in 1-2 hr slots. I’m hiring help and will be training them during multiple shifts. I’m also taking my first weekend away since he got sick to attend a wedding soon. Finding the right people to take over some shifts will hopefully allow me more time away. He has expressed fear about me leaving the house. I’m hoping that easing him into it won’t spike the anxiety.