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Reged: 09/20/13
Posts: 1
Mother passed away and looking for resources for support
      #273984 - 09/20/13 08:19 PM

Hi al,

All my life it was just my mother and I.My mother passed away from cancer brought on by the lowered immune system. What I am having trouble with is that the hospital never told me she had it and I was her health care proxy etc. I was her sole caretaker and they never told me universal precautions while being exposed while doing caretaking. She never told me she was diagnosed , and she was diagnosed when I was 9. She passed away when I was 25. I can understand when I was young, but as I got older I wish she would have told me. I grew up in a generation that mostly understands the diagnosis does not define you. She did not tell anyone in her life, and knowing that she went through this alone ...I cant even imagine. I found out when she was diagnosed after the fact by attaining her medical records. I actually found out her diagnosis from the funeral director, which was traumatizing. I know she was trying to protect me, but in the end it didn't allow me to have closure. I am hoping to connect with people who have gone through similar situations or even people just wanting to connect. There are not a lot of support groups for families who have lost someone. Thanks

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Reged: 10/25/10
Posts: 1131
Loc: GA, USA
Re: Mother passed away and looking for resources for support new
      #273985 - 09/20/13 09:31 PM

I am terribly sorry for your loss. It's never easy especially when so many questions are left unanswered.

You actually covered a lot of different thoughts in your post. One being a concern you may have been exposed. That is an easy one to take care of. Just go to your local public health or HIV clinic and ask them for a test. Most places offer free or low cost testing. Usually done in 15-20 minutes and you are out the door with your results. If you choose to see your GP then it can take 2-3 weeks for the result.

The other thing you wrote about was your mom's reasons for not telling you. That's a biggie and all anyone can do is speculate on it. Though I will use some of your logic to do so. You may have grown up with HIV not being a big issue, but your mom didn't. She was old enough to have seen the start and how awful people and their families were treated. Maybe she thought she could spare you the pain she had for her own status.

Whatever the reason she did it out of love for you, may not have been the right choice by your standards, but it was for her.

Lastly, while this site is for support we don't get to many people grieving a recent loss of a loved one. We all have lost someone at some point and can offer our sympathies, but you have quite a recent and serious wound.
You are welcome to post as much as you like, but may I offer you some advice.

Seek out a local support group where you can meet face to face with people and get the actual support you need. The Internet can be a quick fill in, but you would benefit more from peer to peer contact. Simply open the "blue" section of your yellow pages (community services) or do a google search for local grief support groups. There are quite a few different support groups you can attend with all the things you listed that would be a welcoming environment for you to start your healing.

Again not to say you can't get support here, you can and are welcome to, just don't limit it to here. Ok.

I wish you the best of luck and hope that things start to feel normal again soon for you. Again please accept my deepest sympathy.

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Reged: 05/15/13
Posts: 488
Loc: Alberta, Canada
Re: Mother passed away and looking for resources for support new
      #274002 - 09/22/13 03:54 PM

Good Morning Manda,

First my deepest condolences on your Mother's passing, it is always a tough time when someone we love makes the transition, and I'm sure you have heard it a number of times already "she is in a better place", that might be true, but yes, she is not with you!
Finding out about HIV after must be a shock and worry but do keep in mind, she was not suffering alone with it. Chances are she was quite strong with it, since she was diagnosed some 15 years ago or so. I will say she had accepted it, knew it was there but didn't want to burden you and even herself for that matter. If she was on meds, HIV can be thought of only at med time ... the rest of time it can almost be forgotten about for the right person!

She was around at a time when HIV carried a horrible stigma in the world (still does to a certain degree) but you yourself mentioned, you "grew up in a generation that mostly understands" ... key word being "mostly", it's that word that she felt not to disclose to you or others.

The hospital never told because under law they can't, they can tell you as care-giver what to do and how to do it, but they cannot tell you directly what she has unless she releases them to do so. Cancer can be very mainstream and that is what they had you focus on in caring for her! The precautions they gave you were probably "universal" enough to cover cancer and HIV, as they really are not that much different!

Look online or your phone book for grief support groups, even the local HIV organisation can help you with that, and most areas in North America now have some sort of HIV organization within a few miles. Mention it to your doctor or the doctor she was being cared with, they will guide you to grief support groups and HIV organizations, usually closer than you think!

Accept your closure in the form that your Mother loved you, believed in you and was incredibly proud of you. For the person you are, for caring for her in her time of need. Take HIV out of the equation as she probably would have prefered and know she passed from cancer, it makes it easier. Honor her with her memories, the lasting impression she had on people and her community and of course in leaving a legacy that will carry her name and memory proudly into future generations ... you!

Good luck dear Manda, you had a wonderful loving Mother ... that's all that is important!

anotherday ... in paradise!
daily ponder ... be the reason someone smiles today!

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Reged: 07/14/09
Posts: 1
Re: Mother passed away and looking for resources for support new
      #274078 - 09/27/13 11:28 AM

Hi Manda. Thanks so much for reaching out for help. I can only imagine the anguish that you are going through following the demise of your mother. You are not alone Manda. I can identify with you. I lost my dear wife 6 years back. She was giving birth to our third born who unfortunately passed on immediately after birth. It was a double tragedy. She had been tested for HIV when giving birth to our second born baby boy. She never disclosed her HIV status and I found out from clinicians immediately after her death. I later turned out to be HIV positive as well as my second born child. That is all behind me because I have moved on and later remarried (currently with a wife and 4 kids). Manda, you will get over it with time. Our coping mechanisms as human beings are different. Perhaps that was your mum's unique way of handling this issue. Underneath, I tend to believe she was a good person and she did not intend to bother and hurt you with her predicament. Remember also that she also grew up in the era where stigma/discrimination levels were quite high unlike now when we they are quite low. Manda, healing is more of a process than an event. It is very important that you go through the phases of bereavement (shock, denial, anger, bargaining stage and the resolution phase) before you can move on. Dealing with the intensity of your feelings is critical at this stage and will enable you to forge ahead. Do not stifle your feelings. Learn to vent out your feelings (i.e giving yourself a good cry is therapeutic and has a redeeming effect). However remaining fixated in one stage can lead to depression and therefore with the help of a counselor you can tackle the various phases gradually. Joining a support group in your vicinity can enable you meet other persons going through similar experiences. Support groups are "places of healing" and sharing experiences is important. I concur with you that they are limited in number but go an extra mile in looking for one. I can not agree more with the person who has posted stating that the online support lacks the "human touch'' and it is pertinent that peer to peer support will come in handy for you. It is important that you realize that we do not get over the loss but we go through the process of bereavement. You are stronger than you think and it is my sincere prayer that God will give his grace and fortitude so that you are able to soldier on and also reach out to others in a similar situation. Things will fall into place for you.

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Reged: 12/12/13
Posts: 1
Re: Mother passed away and looking for resources for support new
      #274465 - 12/12/13 04:46 AM

Thanks for nice post share here.

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