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Author Topic:   how to deal with all of the emotions?
erma bennett
posted 03-29-2003 06:26 PM     Click Here to See the Profile for erma bennett     Edit/Delete Message
I have cared for my adult brother for 18 years plus with Progressive MS. After his wife left him, I cared for him in my home and in nursing homes for 15 years. I went every day and twice a day for the past seven years. Two months ago I was told I could bring my brother home on hospice which I have done and entered a whole new roller coaster of emotions transitioning from guarding his care at the nursing homes to trying deal with a whole new program of hospice, and his moods and needs as his sole caregiver. I am very worried that I sometimes lose patience with him when I should be 100% supportive. I am dealing with trying to sort out manipulative behaviors and real changes in the disease process. No other family members have been involved all of these years and he and I am virutally alone now except for hospice. I get so weary of people judging me in this situation, people who have no experience in the real trenches. If someone has an idea how I can smooth out this roller coaster so feel like I have some control over my sanity, I would really appreciate your thoughts and ideas! Thank you.


posted 03-30-2003 09:21 AM     Click Here to See the Profile for GRM4LOVE     Edit/Delete Message
Hello Erma,

Welcome to Empowering Caregivers. You are such an incredible angel to have been caring for your brother all these years.. it is so difficult to comprehend why one person as yourself, becomes the sole caregiver with no others in the family... no other friends to help out at all...

I am aware of the difficulty and the challenges you are presented with in these end stages.. the lifting, the mixed emotions, the whole gamut of roller coaster emotions.

Fortunately, and I pray that this is the case with your own Hospice program.. Hospice really is present to assist you, your brother's primary caregiver. I guess the amount of support they can offer is also dependent on where you are living and what the program offers. I encourage you to reach out and ask them for a social worker or nurse than can sit and listen with you to help you sort through some of the feelings you are experiencing.

As for your brother's moods and your losing it.. you wouldn't be abnormal. It is difficult to be in a postion like you are.. most importantly you need to take some time for you.. to get your own needs met.. you need a breather.. and it is up to you to find a way to set some boundaries and to create some time.. if your brother is in his end of life stages, I am sure it is not an easy place to be for him as well.. he may not be able to express what he is feeling and experiencing if his body is closing down more.. it can surely make him frustrated and irritable.. this isn't to take away from what you are feeling.. just to have you have an understanding... you might try to share with him the mixed emotions you are feeling and ask him to share what he is feeling as well... and if this isn't possible.. you may try to write in a journal daily what your are feeling... all the mixed feelings...set aside some time for you to vent through your writing so that these emotions don't get pent up inside of you...come to the chats, post here at the boards, find others who understand what you are experiencing...

it is safe to be here..no one will judge you.. and we will support you not to beat yourself up and judge yourself for what you are or aren't capable of handling... this is a process.. the most important thing to remember is that you have choices in any given moment.. you can forgive and heal.. and for your to keep your heart open.. so you can be strong.. feeling good about all that you are doing...because it is truly an incredible gift that you are giving..

try to sit with your brother at times, without saying, doing and just allow yourself to be present with him in the stillness... breathe in harmony.. in unison with his breathing and connect with his soul...because you and your brother are more than your physical bodies.. allow that love and soulful connection to come through..

please keep us posted... be gentle and nurturing with you Erman.. you deserve it and no one else can give it to you... it is up to you to do this for you..

richest blessings


posted 03-30-2003 10:40 AM           Edit/Delete Message
Hi erma...and welcome...

How lucky your brother is to have you...and you him...even with all the frustrating emotions my bet is you both are growing closer...enjoy those "close" times..
I think all caregivers go through that emotional roller coaster ride...we would not be human if we didn't...caregiving is never easy...I do think by reaching out here that you are on your first steps to finding a way to let those feelings out...
I hope you will continue to use these boards as an outlet for support...or try to make it to some of the chats...talking with others who know what you are feeling and going through can help a lot...
take care....


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