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Anticipating Another Loss


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I just lost my mom in November from lung cancer, and now I think I may lose my best friend of 23 years very soon.

To give you some background, she had a diving accident when she was 24 and broke her neck leaving her paralyzed from the chest down for the past 6 years. She depends entirely on other people for everything and cannot do anything by herself. She has been experiencing more and more pain and illness the past couple of years and is now bed-bound just about everyday. The days that she can handle being out of bed still only allow her a couple of hours maximum of sitting up before she feels too sick. She has seen countless doctors and has had every test imaginable done to pinpoint the cause of these symptoms, but there is nothing technically wrong with her aside from the paralysis. The doctors all blame her broken spine and unfortunately there is nothing they can do to alleviate any of these daily symptoms (dizziness, cold sweats, fevers, intense chest pressure, etc.).

She has been saying for awhile now that she's not sure how much longer she can live like this, but she's only recently begun exploring her options as far as refusing nutrition. She has spoken to hospices, her primary doctor, her nurses, and various human rights organizations, who have all told her that she is within her rights to refuse food/water/medication and she would qualify for hospice care should she decide to exercise this right.

Obviously I don't want to see her suffer, and it breaks my heart that she is so unhappy and in so much physical and emotional pain, but I also don't know if I can stand another close loss this soon. I don't want to be selfish, but I don't want to lose her. She has been a sister to me all these years and I don't know how I would get by without her, although I know I would find a way. It's hard because I thought I had prepared myself for losing my mom, but now I realize it's impossible to be truly ready when the time comes. Having to anticipate another loss just seems like too much.

Thanks for listening.

Erin

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Hi Erin,

I can't tell you, in words, how sorry I am for the loss of your mom and the anticipatory loss of your dear friend. I have no words of real comfort except to encourage you to keep coming here. We will be here for you.

I lost both parents 10 months apart and you are right there is NO WAY to prepare yourself for one great loss, muchless more than one. Numbness just takes over and wears off a little at a time, as your body can handle. I'm sure that the pain of just the thought of losing someone else special to you is unfathomable but, if your friend is suffering so much, she has no quality of life. You are not being selfish. You are trying to wrap your head around what is happening right now. It was really hard to watch my dad die in Hospice but, I am satisfied that he died peacefully and with the love of his family around him. I think that is all we can do when someone we love's time is here.

Lots of hugs and love coming your way.

2sweetgirls

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Thank you so much for your kind words. It's hard for me to see other people in the same situation as her (or worse) with much more positive attitudes. It makes me angry that she can't be like them, but I know that's not fair because everyone is different and has different coping skills.

She is speaking to her lawyer this week to update her living will. She is adding a DNR and also refusal of antibiotics for any future UTIs or respiratory infections. She already has stated that she does not want to be on a vent again or have another feeding tube or any IV medications. She gets UTIs all the time because of her catheter, so if she will now not be treating them... I don't know how much time she has left here. It's all just too much for me to wrap my head around and I find myself unable to even think about it -- like my brain can't handle anymore and won't let me process it.

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  • 5 weeks later...
  • 2 months later...

So, she has decided that when she comes back from a long-awaited vacation (a 'last hurrah', of sorts) at the end of September that she is going to exercise her rights to refuse treatment/food/water and officially go on hospice. I feel like everything has come crashing down. I'm right back to where I was last year when my mom was sick, just waiting for something to happen. Waiting for it to end. And with her timing, she is going to end up passing right around the one year anniversary of my mom.

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  • 2 weeks later...

Dear Erin,

I know what it is like to anticipate the loss of someone you love. P am so sorry to hear about your loss of your mother.

My wife Pauline of 33 years was my life, best friend, soul mate. We could talk about anything and everything. She had MS from the early 90's. I watched her suffer for so many years. In 2000 I took 6 months out to giver her IV medication 2 times a day. After that I was lucky my employer let me cut back my hours. I did have someone to come in the mornings. I took over in the afternoon and nights. Then in 2008 our morning person quite. I cut my hours back even more. Then I came home about 11:00 A M found her on the floor. She did not want to use the Med alert button, because the last time she did, the responders did not bring the code to the programmable lock and broke in the door. It was at that moment that I decided I had to quite my job. I did early the next morning and was home by 8:30 AM. It was the best thing I did. It turned out to be the last 2 1/2 years of her life.

The last 4 months the MS was like a fire burning up her body. I took care of everything for her. Even though we saw the end was coming on fast. We had talked many times about her passing over the last 16 years . We even made arrangements to have our bodies donated to science. That was in 1996 we done that.

I was with her at home on hospice her last 3 weeks, and with the medication kept her pain level way down. I was with her until her last breath, her mouth moved " I LOVE YOU TOO ".

Being ready I thought I was but really when you loose that human connection, no matter how much you prepare, it is still very difficult to get through.

Spend as much time as you can with your friend, even though it will make you cry. It is ok, she needs your support through this transition she is going through. I agree it is selfish to want to keep her here longer than she wants

Just be her best friend she has always know you to be. Coming here will be a big help for you as you witness this process we all have to go through at sometime.

God Bless, you, I will pray for peace and comfort for BOTH of you

Dwayne

The Best and Most Beautiful Things in Live, cannot be Seen or even Touched. They Must be Felt with the HEART!!!!! Helen Keller

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  • 3 weeks later...

Marty and Dwayne, thank you so much for your kind words and help.

It's official: hospice begins on October 1st. I really don't know how to deal with this at all. She said that she was told she will probably go into a coma within a week and die within two. She said she knows I have work and other things going on (our apartment was destroyed in the hurricane and we're temporarily living with my dad until we can find a house), so if I can't be there with her it's ok. She lives about 45 minutes away. Obviously I would like to see her as much as possible, and I think I want to be there at the end, but how do I even begin to explain this to my boss?? I'm going to need time off, and I only have 2 official vacation days left. I am fine with taking unpaid time off for this, but I know I can't take the full time (since we have no idea how long she will last without food). Still, I feel like I need to notify my boss of what will be happening should I need to leave unexpectedly. I work in a really small office (8 people) and I know they will understand, but the idea of saying the words out loud to someone has me completely freaked out.

Erin

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Erin, dear, I think saying the words out loud is what will make it real, and that's why it seems so difficult. If they're as understanding as you describe, however, it may be in your best interest to let them know what you're struggling with, so you will have their understanding and support. It seems to me that you need to think through very carefully what is most important to you and your friend, and you need to pay attention to your own needs, too. Think about what is realistic for you and what you feel ready, willing and able to do ~ and think about what you'll be able to live with later. You know yourself (and your friend) better than we do. Do you have any unfinished business or anything you need to say to her before she dies? If so, you may want to take time to be with her fairly soon, even if it's only for one day or even one hour, so she is still able to hear whatever it is you need to say to her. If she lives just 45 minutes away, you could accomplish that without taking any extra time off from work. If you're unable to take off more time from work than that (for whatever reason) I have a feeling that your friend would understand. She may not even expect you to do more than that for her. (It sounds as if she's already told you that.) Think about which would mean more to her (and to you) and what is realistic for you to accomplish ~ to see her again for a brief but meaningful and time-limited visit before she dies, while she is still alert enough to appreciate it? Or to stay in touch with her by phone, as long as she is able to do that? Or to keep a deathbed vigil at her side for an indefinite period of time, when she may not even be aware of your presence? Or to be present at her funeral / memorial service after her death has taken place? Or to do all of these things?

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Marty, my birthday is this Sunday so I am going to visit her next weekend to celebrate that (although I have to admit I am not in much of a celebratory mood...). That will probably be the last time I see her before she starts hospice as she leaves for her trip soon after that. We have both said many things through email (we write often, every day or every other day) and I feel at peace with our relationship - I don't know that there is anything left to say. I don't want next weekend to be a big goodbye, but I also don't think I can just leave like everything is normal.

She has told me that she understands completely if I can't be there with her due to work and other responsibilities. I don't think a bedside vigil is necessarily realistic, but I'm worried that I might be a 'bad friend' for not doing that. I obviously want to visit her during her time on hospice, but I feel guilty for thinking of the amount of driving and how tired I'll be going down there and back after work. Then I think that she is more important than work, I mean we've been best friends for 24 years and she is more of a sister than anything else - shouldn't I be there for her last days?? I don't know. It's all so confusing.

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  • 4 weeks later...

Well, today is the third day she has gone without eating. She is drinking only enough to take the pills necessary for her bowel/bladder issues. Her last bowel regime should be this Thursday, so once that happens she'll only be on morphine, xanax and remeron.

I saw her last night and asked her how she was feeling. She said she's not hungry or thirsty, and she's not in any pain or discomfort. She seemed normal. I'm going down again tonight and tomorrow, and then plan to sleep over on Friday night. She thinks by then she might be getting pretty weak and sleepy, but I still want to be there.

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Erin, I am SO sorry about your friend. I can't even begin to imagine how hard this is for you already trying to deal with so much yourself. You sound like a heck of a great friend and I'm glad you are at least able to get the chance to visit her. Ugh I just don't know what to say, there are no words. Just know that I'm thinking of you and sending you lots of love and hugs hon.

(((((()))))))

Niamh

x

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Thanks Niamh and Marty.

She seemed fine last night. It's weird because she seems so normal, and she's definitely happier than I've seen her in years. I assume that's because she knows there's going to be an end to her suffering. It just makes it hard for me to come to terms with everything when she seems fine - even though I know underneath she's still miserable and in pain.

She has a lot of visitors coming today and tomorrow, so I won't be seeing her again until Friday. Her mom and sister (her main caregivers) need a break, so they are going to stay with family since they know my husband and I will be there. Her aide will be sleeping over as well, just in case anything happens, but we doubt it will.

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  • 1 month later...

Hi Erin,

I know the feeling of having multiple loved ones nearing the end of life. I understand how hard it is to grapple with loving them, caring for them, and trying to sort how your own feelings about thier loss and their needs and desires. I lost my father 4 years ago to cancer. My mom was diagnosed with terminal lung cancer a year after this death. I feel like I have been dealing with letting the passing of one parent go, while I was preparing for the eventual passing of another. It truly has been the hardest thing I have ever confronted in this life. I thought I would just offer to say that experiences like the loss of our loved ones are far greater than anything we could ever prepare for and confront. All you can give yourself right now is time to take in the loss of your mother and the time to prepare to absorb the loss of your best friend. There is no right or wrong way to do it just simply finding your way through it every day is all that you ask of yourself. The anticipation is so difficult, it feels like you are grieving the loss far before you even experience it. I wish you continued strength and hope that life gives you the opportunity to be there for her so that you have the peace you need in your heart to let her go when that time comes. I love my best friend like she is my sister and I know that if I were to face her loss right now I know that this is what I would hope for. I also know this is what she would want for me. You are a good friend and I know that she knows this and appreciates you as you accompany her into the next phase of her journey. God bless.

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hi Erin,

Just wanted to let you know I'm thinking of you. It's been a while so am not sure if you friend has already left this life and you are now dealing with the grief of losing her too.

anyways, always here, sending lots of love, hugs and comfort your way

Niamh

xo

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Hi Niamh,

Thanks for checking in on me. I haven't been posting here much, but I do read.

Almost 7 weeks later, and she is still with us. It's been exhausting and stressful and just plain awful. She was in a lot of pain and discomfort for the first few weeks. They admitted her to a hospice facility last weeks for a few days in order to get her pain medications figured out. They gave her something that made her have horrific hallucinations: she literally turned into a paranoid schizophrenic and was seeing and talking to people who weren't there. She didn't trust anyone, she thought we had all abandoned her, and it was the one of the most difficult things I've ever had to witness. Once they moved her back home, her sister (her health care proxy) refused that medication and she was put back on morphine. She is much more comfortable now, but still a little confused. She is sleeping a lot and very weak. Her doctor predicted (a couple weeks ago) that she would "make it through Halloween, but not Thanksgiving" - I don't know what to think about that, considering the original estimate they gave us was 2 weeks! I have a gut feeling that she will pass sometime at the end of this week.

I have mixed feelings about the whole thing. As much as I don't want this to be happening at all, I just want it to be over (for her and for us). Part of me kind of hopes that she does pass this week so that her passing will be within days of my mother's anniversary (the 17th). I know that probably sounds crazy, but I can't help but think that it would easier to get two anniversaries done with in the same week from here on out. That sounds awful, I know.

Erin

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hi Erin,

OH wow that I didn't expect to hear just like I'm sure you didn't either. I can't even imagine how difficult it is watching your friend. I have a friend who went through the same with one of her friends, she had such a hard time seeing her friend be sick, confused not recognising her, it's definitely very draining for you.

Your feelings make perfect sense and as Marty says sounds so completely human and understandable.

I just don't know what else to say other than here's a (((BIG HUG))) for you.

You're in my thoughts too for 17th and your dear Mom, it's a mini one (23 months) for me so I've taken the day off work for me time, will be thinking of you tomorrow,

Niamh

x

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  • 3 weeks later...

My very best friend of 23 years passed away at 9:30 am on December 1st, two months to the day from when she began this process. I feel like I'm in shock, which is confusing because I knew it was coming. I watched her decline. I knew what the end result was going to be. Apparently it's not possible to prepare yourself for loss.

I went in and saw her a couple hours after she passed, which was a huge mistake. She looked awful, like something out of a horror movie. Her eyes were half open, as was her mouth, and her skin was a sickly yellow/gray. I wish I had never seen her like that. I am trying to look at pictures of her from years ago to erase that horrific image.

Because she was such a huge advocate for spinal cord injury research, I feel like I should share her website and blog here: www.christinasymanski.com and http://lifeparalyzed.blogspot.com.

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Oh Erin, I am so so sorry to hear about your friend, I can't even imagine how hard it was to see her decline like that, I hope looking at nice photos of happy times will help erase the horrible images. Like you say I really don't think anyone can truly prepare for losing someone regardless of knowing for sure you will I still don't think our human minds can truly grasp it until it happens, I don't think we could cope with it if we truly knew before hand because I think when it happens we do go into shock and our minds protect us by letting reality sick in so very slowly.

I know there's nothing I can say to give you comfort, all I can do is send you lots of love and a big hug,

Niamh

xo

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