TO ALL THE CAREGIVERS HELPING PEOPLE WITH AFS, THANK YOU!
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Published 2023-05-30
My partner is a chiropractor and she was use to having many patients in her day and she had a lot of experience dealing with people with physical issues, she however couldn't believe how brutal this illness was and how many symptoms you can have. When you are in the advanced stages you need help, support. I also know that many ill people do not have the support they need. My heart goes out to you. It is not easy to deal with someone that is constantly ill and you don't know when someone will be better. This can be about many illnesses I know.
Please know that we do not want to be a burden. It is hard for us to be so vulnerable and need someone so much. We feel so vulnerable and you right now are a lifeline.
When you are very ill with AFS you won't be able to work, go shopping, drive, socialize, many are couchbound or bedbound. For all of you with children I know that this is a difficult time for you too. Children are confused, they don't know what's happening. They get nervous too.
I KNOW THIS IS LENGTHY BUT IMPORTANT.
People that are ill have a hard time dealing with any kind of demand put on them in any way and that definitely includes their children, family and even friends. I wanted to take this time now to SAY THANK YOU for being a part of the healing process. Because this is such a difficult time I wanted to share some:
HELPFUL TIPS FOR CAREGIVERS TO TAKE CARE OF THEMSELVES...
1- Be aware that there can be many symptoms that come with this- there will be much fluctuation in the personality of the one you are caring for, sudden anger, sadness, tears, needing to eat often, they may say things like I don't know how long I can do this or I don't feel like I can live like this any longer. This will frighten you and confuse you because you will not always know what to do but simply listen and encourage them with your love. Love heals we all know that. They need to know they are loved. We know you will be doing so many things for this person and they will not be happy or may not even be grateful just let this go. Don't have a lot of expectations on this person as they are very ill. They will not be able to do many of the things that they use to do. If you can afford to hire someone to help you do some things in the house like even grocery shopping this may be a huge weight off your shoulders. Many of the caregivers have to work and provide for the entire family. The ill person may say to you I can't be alone please stay with me. The fact that one can not contribute any longer because they are not able to work I know puts a huge stress on the primary caregiver. You have to be creative now to help you take some stress off of you. Be creative because there may be some options for you that you haven't thought of.
2- People who are really ill don't want to have to rely on you so much they just have no other choice. They are in a survival state. I know I have said this often but it is true.
3-This will put a lot of pressure on you in many ways which of course you can see now and my heart feels for you. Please try to get some rest when you can. You will feel stressed so you have to have many of your own strategies to relax. Talk to your friends, family members or someone you feel comfortable with what you are going through. This is important, I feel for you. You will get frustrated and confused often.
4. Get out into nature for a walk. Say empowering things to yourself to keep your strength up. If you feel angry please try to walk away and redirect your focus on something you can do to calm yourself. Like I said people with this illness are all over the place. It is a very painful illness and they will feel hopeless often.
5. If you have a hobby and you love it try to stay connected to it.
6. These are just a few, I know you will think of others. Just do the best you can. You will feel many emotions yourself and don't beat yourself up for having them. Nothing is easy with any of this but what's important to know is- EVERYONE IS DOING THE BEST THAT THEY CAN...
If any caregiver has any questions please feel free to reach out to me.
Lots of love to all of you,
Petra
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All Comments (10)
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Such an understanding video…as always ‘Thankyou Petra’. 🌷
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Your encouragement and wisdom is inspiring. ❤
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Petra’s videos keep me going.
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Petra, I couldn’t help but cry while I listened to you. You’re right, there’s no manual on this and you don’t know how to explain it. And when I’ve tried, I usually ended up regretting it. So it is a very deep teacher. I I have always desired wisdom and boy, is this the time that we gain wisdom. And we have to take that gift and keep it as a treasure inside of ourselves and not need to explain it. And when you said this is mind blowing, that is not an exaggeration. I think the people closest to us have absolutely not known what to do to help so I highly value them for what they have done and for listening when we need to talk. I haven’t had a caregiver, per se, but I’ve had one or two people that I could vent to. But when it comes down to it, this is our own work, 1 foot in front of the other, when we have the energy and just keep on going, even when we have no idea how to do that and when we have no clear objective picture of whether we are making any progress. It’s like you said, Petra, and one of your other videos that you would say yourself I don’t know how I got here, meaning, finally got healed, but it was a matter of one step at a time, and it got you there, and it will get all of us there. Amazing. I’m still in my healing journey, but I see a little glimmers of progress and it makes me hopeful that I will come through this and be wiser. Love to all and encouragement to all. ❤️
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Yes, anyone who has patiently listened to us when we needed to talk or offered us any kindness on nurturing are so invaluable. We don’t want to stay in this situation, we want to be healed so badly. I thought how wonderful it would be if I could go to a convalescence facility, like Bette Davis did in the movie Now Voyager. There used to be places like that and maybe they’re still are for the very wealthy. A place where you can go and rest and heal. Love you, Petra. And much love to all you who are on this journey with AFS. And thank you to all of those who have extended support and kindness when we have so desperately needed it. So much love to all of you. ❤️
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Great idea Petra! About the interview with your partner. I don’t think there is any interview there with a carer of an AF person. ❤ so this would be valuable. I’m sure she had very trying times. Our caregivers deserve so much thank yous.
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Absolutely mind blowing...🤯🤯 thxxx 🌺💖✨
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Petra this is so hard I don't know when ami going to get out of this you look so diferent beautiful I wish I was there already
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I literally had my aunt tell me I was a burden cause I asked to stay with her I was so scared still hurts me to this day . Never felt so alone anxious and low . You never felt heartbreak till ppl don’t wanna be around you cause you are so unwell.
