Having Trouble With Anticipatory Grief

[justme2]

Hello,

I'm new to this site, but have been reading some of the other postings. I have found some comfort in the compassion and caring that you all show for people who have come here for advice and sometimes just to vent.

My sister has been suffering from renal failure for 10 years. I donated a kidney to her after she had been on dialysis for 2yrs, but unfortunately, the anti-rejection meds failed after 3yrs. So, she's been back on dialysis for the last 5yrs. It's taken a terrible toll on her. Her blood pressure is extremely low and so she passes out and falls frequently. She's had sooo many concussions, sutures, rib fractures, lung collapse, broken nose and skin laceraterations... She had an ocular stroke behind her right eye last year and lost 90% vision in her right eye. Last week she saw a specialist because she was having visual problems in her left eye. He told her that because her blood pressure is so low that there is not enough blood flow to the vessels behind her eyes and she is going to lose the vision in her left eye also. She's going to be blind...

She has lost so much of her independence already. She's so depressed. (no wonder why) Knowing her the way I do, I know she will give up fighting. We both believe in quality of life over quantity of life. She barely has any quality of life now. She barely gets out of bed because she's so weak. She watches television to pass the time when she's not sleeping. Okay-- now she's going to be blind and won't even have the television to watch.

She's always been a Type A personality. She was a social worker who dedicated her career to working with children. I see the decline, so hard to watch her get weaker and weaker. More and more depressed. I'm an RN, I know she's dying. I've talked with families and patients who are in the dying process. Words of comfort and advice on dealing with the grieving process. God, I understand the process--- but I can't wrap my head around the fact that my 58yr old sister is dying. Tried denial... not working. Tried thinking logically-- she doesn't want to live like this...not working. Cried my eyes out...not working. Even tried an extra anti anxiety pill... not working. So, please, anyone I'm desperate. My sister and I are very close. My mother is a true "Mommy dearest" and I haven't talked to her in years.I have an other older sister who I haven't talked to in years. How can I lose my best friend, my sister, the person I can tell anything to and not go off the deep end. Might as well let you know that I also have depression issues too, so going off the deep end isn't really out of the question. I haven't been able to accept this at all. Any help would be appreciated.

Thanks

[MartyT]

My dear friend, my heart goes out to you as I read your sad story. I'm so sorry that your sister is so ill. You've already given her so much of yourself ~ I simply cannot imagine what you must be feeling . . . I don't have a twin, but I do have a sister whom I love with all my heart, and I cannot even think of going on without her physical presence in my life. Sisterhood is a relationship unlike any other, and with twins it is even more so. You are two sides of the same genetic material, sharing your very DNA, and inseparable in so many ways.

You say that whatever help we can offer would be appreciated, and I am struck by the number of different issues you are facing. Not only are you a sibling here, but this is your twin. You say you are prone to depression. Furthermore, you are yourself a nurse, so you don't have the "ignorance is bliss" advantage (if there is such a thing); you know exactly what you are facing here. You also say your defense mechanisms are not working, and you "haven't been able to accept this at all."

I'm going to point you to a number of articles that I hope you will find helpful, if only to help you feel less "crazy" or alone in your circumstances ~ but I also hope you will consider speaking to a therapist or counselor about all of this. It seems to me that you need and deserve to have someone to lean on as you work your way through whatever lies ahead for you and your sister. If ever there were reason to seek the support of a professional, you have more than several ~ not the least of which is your concern about sinking into depression and despair.

Here are the articles:

Anticipatory Grief and Mourning

When The Griever Is A Healthcare Professional

The Bereavement Process for Twinless Twins

Can We Ever 'Accept' The Death of a Loved One?

Grief and Depression: Are They Different?

How Does a Twin Honor the Sister Who Died?

Twinless Twins Support Group International

Death of a Sibling or Twin: Links to Resources

[justme2]

Thank you so much for your kind words. I will definately go to the sites you've suggested. Yes, I know what you mean by the comment that sometimes ignorance is bliss. And yes, unfortunately, I know exactly what path she is going down. I do see counselor, so that at least is a step in the right direction. I'm trying hard to remember that when she does pass, she will be in a better place without the mental and physical pain she is in now. I will go the sites now. Thank you, I'll post again.

Sincerely,

Tracy

[hockeymom]

The loss of a twin I think is so different than the loss of a sibling. I know several twins and the bond that they share goes beyond just being a sibling. I am so sorry for your loss and hope that time starts to heal. You're not crazy - simply grief stricken and I'm so glad that you've sought out counseling.

[justme2]

Dear Marty,

I just read the post about grief and loss for the healthcare professional. Actually, I read it twice!

The following was something you had written and you are sooo right!! We expect that we should be able to handle any situation. And we can't always do that.

Written by Marty and so eloquently put:

So often we healthcare professionals (and most especially, we nurses!) believe that we “should” know what to do in every crisis or emergency situation, not only for our clients and patients but for ourselves as well. We hold such unrealistically high expectations of ourselves, don’t we?

I too, like the nurse that was writing have worked in an intensive/cardiac care unit, but also in Long Term care, the geriatric age group. I've gone through many deaths with family and the dying person. And I've had many kind words on how much I've helped them through their journey. Gee, wish I could help myself through this journey better. I'm going to go outside and take in some fresh air on this Indian Summer type day. Thanks again Marty. I'll be back to this site again soon.

You are great people here.

Tracy

[justme2]

The loss of a twin I think is so different than the loss of a sibling. I know several twins and the bond that they share goes beyond just being a sibling. I am so sorry for your loss and hope that time starts to heal. You're not crazy - simply grief stricken and I'm so glad that you've sought out counseling.

Thanks you so much. I appreciate the support and am so glad I found this site. God bless.

Tracy

[kayc]

Just Me,

My heart goes out to you. I also have a Mommy Dearest and my sisters mean the world to me...we have always had each other. Friends have come and gone (so have husbands) but I've always said, "sisters are forever". That is until one of them passes on. A couple of years ago I came very close to losing two of them, but they pulled through. I can only imagine how you are feeling because that is what I was facing at that time. It is very stressful. I guess we survive it the same way we survive anything hard...I lost my sweet husband 7 1/2 years ago...he was just 51, we hadn't expected it, I thought we'd have at least 20 years left together before we had to go through this. I've learned that my life does continue, whether I wanted it to or not...not the same, it is greatly altered. In fact, nothing about it seems the same, but I have somehow adjusted, a little at a time. It is amazing what we survive when faced with no other choice.

My only real advice to you is to stay in close contact with a good doctor, one that listens, one that cares, one that will address whatever issues you might have, depression, anxiety, whatever you encounter. I had such a doctor...he closed his practice two years ago after having been my doctor for 33 years. It was hard to find a new one, but I did. It's important to get the medication you might need, and to take good physical care of yourself to give yourself the optimal chance for quality of life that you can. We need exercise and good food and sleep in order to think and feel our best, and believe me, we need that if we want to survive what we're hit with in life.

The other is, to keep coming here, to a therapist or counselor, somewhere you can vent, somewhere you'll be heard and can receive some guidance. It is so important to have our feelings acknowledged. They ARE important, they ARE valid, we DO count! Marty has given you some places to start, bless her heart, she is a powerhouse of resources and caring.

My best to you and your sister, I pray for your strength.

[hockeymom]

Excellent advice from KayC. It is important to have an outlet for the grief and a place to go that brings you comfort. Keeping you in my thoughts and prayers!

[justme2]

Thank to both you and kayc for your advice and kind words. It's wonderful to have found such caring people!

[kayc]

Keep coming back as often as you like. Sometimes I miss a day but most days I check in.

[justme2]

Hello friends,

Well, just another day. Started having heart palpatations and had a not so fun episode of radiating chest pain a week ago. Stress is just such a fun thing isn't it?! Yes, as a nurse I know should go see the doc. (no med insurance) And it is true that nurses are the worst about taking care of themselves.. everyone else ALWAYS come first. Even my therapist has been on me about it. But as I mentioned, no medical insurance...

So, life goes on. I read an interesting article about Thiamine and how a deficiency of it may affect vision. Called my sister and told her next time she has dialysis to please have them check her level. (As in a previous post, she's already lost vision in 90% of her right eye and has been recently told she's going to lose vision in her left eye). It said in the article that long term dialysis can cause a thiamine deficiency, which can affect muscle co-ordination (she falls soooo often and also affect vision) so maybe I'm grasping at straws, I don't know.

With the holidays coming, I wonder how many more we'll have together... I try really hard not to.

Take care all,

Tracy

[MartyT]

Forgive me, Tracy, but it's impossible for me to ignore your statement that "as a nurse I know I should go see the doc" for the symptoms you describe, even though you don't have medical insurance. If you suffer a heart attack because you failed to pay attention to these serious signs, who will be there to care for and about your sister? As the airline attendants always tell us, if something goes wrong on a plane, you need to put your own oxygen mask on first before you can help someone who is depending on you. How can you expect your sister to respect and follow your medical advice if you don't take good care of yourself too? I strongly suggest that you think very hard about finding some way to get a doctor to take a look at you and evaluate your heart symptoms. Is there another family member who could help you pay for a visit to your physician ~ or could you make some other financial arrangements with your doctor? I am very concerned about you!

[justme2]

Hi Marty,

Thank you for your concern. I am in the process of trying to get medical insurance. I should know more mid week. I know I need to be taking better care of myself. I haven't told my sister about my recent issues. She has enough on her plate now. And, I know she sure doesn't need to have more stress if something happens to me.

Worked my usual two 12 hour shifts over the weekend, so I'm still awake and trying to unwind...

Hopefully, next post will be positive and I'll have been able to get my insurance and get my butt to the doctor.

Thanks again,

Tracy

[kayc]

Tracy,

In the meantime, while you're trying to acquire med. insurance, try to do anything you can to relieve stress. Maybe some visualization? It can work wonders! Visualize your sister safe and happy, release her into a beautiul place where you know she will be cared for. Do the same for yourself. Listen to soft music, light candles, maybe have a glass of wine to sip on, take a bubble bath, go for a walk, spend time around pets, watch a comedy, anything that will help you relieve stress and relax! Eat a chocolate bar! (((hugs)))

[justme2]

Dear Kayc,

Thank you so much for your tips. I did start watching "lighter " television shows. I found myself watching really dark shows and then wondering why I felt even worse... shouldn't have taken a Rocket Scientist to figure that one out, but at least I did . If you don't mind some of his language, Robin Williams "Live on HBO" is hysterical. I liked the tips you gave though for relaxing. Sometimes my mind runs so fast I can't even keep up with myself?! Does that make sense?

I have known for awhile that I wasn't going to have my sister with me as long as we once anticipated. We'd laugh about when we got old, and what we'd be like... I know I do need to try to visualize her in a place where she's happy, not in pain and has peace of mind.

I guess what's been the hardest is her most recent issue, that she's going blind. I'm just not able to accept that-- like I have a choice, and if I feel that way, how must she be feeling.... I feel selfish that I'm not able to accept it when it's happening to HER! We've only spoken about it once, the day she came home from the specialists and called to tell me. She was crying and so upset and I didn't even know what to say. I actually looked up corneal/retinal/eye transplants, because I would give her one of eyes. But, they won't do living donor eye transplants.

Thank you so much for your input.

Everyone here is so special. Your support has meant/means alot.

Tracy

[kayc]

Yes, I do understand mind racing...I get it in the wee hours sometimes, but then I'm on anti-anxiety medicine and always will be, it runs in my family.

Is your sister on a waiting list for a donor eye?

[justme2]

KayC,

Since I donated my kidney to her years ago, and her body rejected it 3yrs later, she's been in a downward spiral. She's extremely underweight. The transplant team won't consider her for another kidney transplant until she's gained at least 20#, so they won't even talk eye transplant. I don't understand, they transplant organs into children/babies... why not her? She probably weighs 85# soaking wet, but she still weighs more than a child. She even has another living donor like I was ready to donate another kidney to her. Ironically, and very sadly, when she first became ill, she wanted to be an organ donor, and specifically designated that she wanted her eyes to go to children to help them see. That's what a special person she is. Now, even that won't be possible

Thanks for listening

Tracy

[justme2]

KayC,

Sorry, I forgot to address the mind racing. So sorry you understand it so well, having to live with it too. It really is soooo hard, especially in the middle of the night when most are sleeping. I also take antianxiety meds. Sometimes they help, some time not as much. I imagine you've experienced the same. Please continue to keep in touch- as you're able.

Sincerely,

Tracy

[kayc]

Tracy,

That's how it is with me too, I will always be on anti-anxiety medicine, I think I probably needed it even as a child but in those days no one addressed it, esp. in children.

Is there some kind of protein drink or something your sister could drink to help her gain weight? I wonder if it'd help to talk to a professional body builder, they're taught how to do that and it would benefit those who are ill not just those who want to look buff. Maybe if she could gain some weight and get the kidney situation addressed, she'd become an eye transplant candidate...then she COULD have eyes she could donate! Incidently, not all people who are blind are ruled out as eye donors, it depends on the reason for their blindness...sometimes the eyes would work but the connection has a breakdown somewhere...is it something she's discussed with her doctor? It's so important to respect the wishes of those who are failing...my own George was able to donate his eyes, it was the only thing they could save. It is a comfort to me that someone out there has his beautiful eyes. Someone asked me once if it bothered me that someone else had his eyes, what if I saw them, etc. No, because the soul behind the eyes is different, making them uniquely theirs...it's not the same as when he had them, just the same pretty color, shape, etc.

[justme2]

KayC,

What a wonderful gift your husband gave. The gift of sight. I imagine it is a comfort to you that someone out there has his eyes. Just imagine how grateful they are!

You are a special person, and I feel glad to have you to talk to.

Tracy

[AnnC]

It was the same for my brother, the car crash really destroyed his body, but they were able to donate his corneas, and the transplant was successful. He would be so glad to have helped someone to see.

[kayc]

What's neat is that I can see his eyes in his granddaughter.

[justme2]

First to AnnC,

I know very often in my life I've wondered why... why did this happen, why did that happen. I've questioned God, why would God let something like this happen. No one I've ever talked to has been able to give me an answer I understand. I've said when it's my time, if I get to talk to God, I guess he'll tell me. The loss of your brother must have been of course, at the very least devistating. But, out of that terrible tragedy, someone who couldn't see, can now watch a sunset, see a rainbow, see the people in their lives that they love. Out of his loss, something good happened. He sounds like he was such a special person that as you said, I'm sure he'd be happy to know he's helped someone see.

To Dear KayC,

My friend, what a wonderful gift you have received to look into your granddaughters eyes and see your husbands eyes. Life is so cruel sometimes, losing the people, pets that are so deeply a part of your life. God has indeed given you a special gift in your granddaughter.

Tracy

[kayc]

Tracy,

Thinking of you and wondering how you're doing...