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Comment by Cynthia Horacek on March 10, 2011 at 7:58pm

Susan -

It's none of my business of course, but if I were to give advice, and you haven't asked for any, what I would say is take care you right now. Do whatever you have to do to get through this, and that may include not reading your sister's emails, and no replying.  Maybe just block her email for now.  If she calls, tell you simply don't have the energy to take care of her (emotionally), too.  We don't choose our siblings; it's the luck of the draw.  Just because someone is a sister or brother doesn't mean we own them anything.  Again, take good care of you; you're going to need all the energy reserves you can muster if you plan to care for your dad.  I would get a caregiver in addition to hospice; someone else to do the little things you can do, and maybe stay overnight with him so you can be with your family.  Just my thoughts...

Cynthia

Comment by Susan F. on March 10, 2011 at 5:25pm

You're so kind Cynthia.  Thinking about what you said, I realized that I am letting some of it out because of my sister.  She lives in another state and so I have been here by myself with mom and dad.  Sadly, she has a borderline personality disorder and is a very unhappy, angry, bitter woman.  She didn't come to mom's funeral and won't be at dad's.  She doesn't have the ability to love.  Since the day mom died she has been horrible to me saying things I can't even put down here.  Having been through 40 years of her illness, I know that it is not something that can change and always remember that it is the illness.  It hurts sometimes and it's always very sad to see her so unhappy, but most of the time I can put it aside and go on with my life without much bother.  Well, since mom died and she started up, I'm feeling personally wounded and cry everytime I get an email from her.  (We only communicate thru email - no phone calls).  I'm working on this one, but anyway, i guess that's my outlet right now.

Comment by Cynthia Horacek on March 10, 2011 at 1:34pm

Susan:

Sometimes the way we handle our grief is to be numb; and to not feel anything for a while.  It's just a coping mechanism.  Losing a parent is hard; losing a spouse is hard; I cannot imagine losing a child, even an adult child.  I think my father in law was for some reason "holding on" for my husband because for over year he'd been telling us he was "ready to go" and he was physically very infirm an needed a lot of assistance just for daily living; but mentally, he was very sharp.  My daughter and i went to visit him twice after my husband died; I didn't want him to think now that his son was gone, I was going to abandon him.  My husband went to visit his dad every Saturday, unless he was really sick; but even when he didn't feel "well," he went.  We were told that the night before my father in law died, he told his caregiver "I'm going to be leaving, and I won't be back, but it's okay because I'm going to be with my son."  He was 96 years young.  And he died sometime that night or in the early morning; when the facility where he lived called me, I called the hospital and told them he had a DNR, and fortunately I didn't have to come up with the document because I didn't find it until a few weeks later; but to try to resuscitate a 96 year old man who was so infirm just didn't seem right, and I know he didn't want that.  

But anyway... I still have both of my parents and even though they are older now and need some help, I do count myself fortunate to have them.

But that's not what I wanted to tell you.  Don't be surprised if one day something triggers a memory or a feeling and you fall apart.  It may or may not happen; but if it does, let it.  It's part of the healing and it's a release.  And it might catch you totally by surprise.  I cried a lot the week my husband was in the hospital, and then I was angry a lot, but I didn't know why; we didn't have a prognosis yet.  My brother thinks I did know, and maybe I did.  But while my husband was alive, and fighting the cancer, my crying seemed to come when I was frustrated with some medical person or agency or something, and that allowed me to let it out because I don't think I ever really faced the reality that the cancer might kill him; we both just assumed he'd beat it, and that was our attitude.  So when the dr. told us in his office that Don had days to weeks, I cried, but it was more weepy crying.  Then when he was at home and hospice let me down by not getting his morphine to us when they said they would, I cried at those things.  Then when he actually died, and I laid down with him and held him, I cried.  And then I didn't cry for a while.  I got teary at time, but I didn't really let it out and sob and rage and feel like I couldn't go on until weeks later.  I think it was maybe  4 or 5 weeks or longer.   I still have those days; I call them meltdown days, but they are farther and fewer between.  i am actually moving on, I think.  I am going back to work teaching at a local university (part time) this summer and fall; I don't know about seeing clients yet (I'm a marriage and family therapist if I didn't already tell you that).  

But you were very close to you mom, and frankly a loss is a loss.  And no one can tell you one loss isn't as  painful as another, or "gee, mine hurts more...."  All that matters is how you feel, how you cope.  So again, allow yourself whatever you need.  Lean on your husband for support when you need it, and know that it's okay to smile, or laugh or enjoy something.  You are not being disloyal.  I can only imagine how much you miss you mom; I know how much I'd miss mine if she were gone.  Take care of yourself. 

Cynthia

Comment by Cynthia Horacek on March 9, 2011 at 11:10pm

Dear Susan -

Speaking for myself, your words about your mom - and your dad - did not come across as insensitive at all.  You are simply writing about your own experience.  My father in law died from a massive coronary 2 weeks after my husband died.  He was a lovely man, always generous and loving to me and to his sons, his wife and his grandchildren, but he death was expected, and when it's an elderly parent, not to be insensitive to you, somehow I think it's different.  We expect to outlive our parents.  We don't necessarily expect to outlive our spouse.  I tend to go on and on in these posts, so I will try to keep it brief. I am a Marriage and Family Therapist and did support groups for hospice years ago - both bereavement and pre-death for caregivers - and I learned a lot from my clients, but when it was my turn, it was all new and I didn't know what to expect.  What I do know is we all grieve in our own way, there is not right or wrong, there is no "timeline" for grief, and sometimes people say or do the "wrong" things because they simply don't know any better.  So when people ask me how I'm doing, I tell them.  I also tell them I may cry, and if they can't deal with that, don't ask.  My system of support is wonderful - good friends, loving family, and I consider myself lucky for that.  But missing my husband happens every minute of every waking day, and even when I'm sleeping.  This is new for me; I know I'll survive, and I know it will eventually ease.  But for now, it just plain hurts.  

I tend to go on and on, so I'll just stop now and say good night, and thank you for your kind consideration of addressing Debbie and me. 

Cynthia

Comment by Susan F. on March 9, 2011 at 9:17pm

Cynthia and Debbie,  I just read your most recent posts and I'm so sorry for your loss and the tremendous grief that you have in your hearts.  I've been going on pretty matter-of-fact about my parents and feel bad about that after seeing how deeply you're hurting.  My grief just hasn't set in yet, I think because I'm just still numb from losing mom and already having to kick into gear to take care of dad.  I hope that I didn't sound insensitive to the rest of the members of this group that such open wounds from their losses.  Susan

Comment by Susan F. on March 9, 2011 at 9:07pm

Thank you Stan.  I put mom in hospice and kept her at home because she made me promise years ago that I'd never let anyone put her in a nursing home, and she made sure she had the financial means to do that.  I was apprehensive about it, not knowing what it would be like to watch someone you love die, but I have no regrets at all.  It was comforting for most of us to be with her during those last few days.  And yes, my dad will be in hospice as soon as I can do that.  He's a hold-out for going to the doctor and it seems to be keeping him hopeful eventhough he's not getting any treatment.  The doctor knows I want to move forward with hospice as soon as possible and is going to help me transition dad into that soon, probably at the next visit the beginning of April - sooner if things progress faster.  Your idea of making a list if good.  I'm going to take a look at your articles and start that tonight.

Comment by Stan Goldberg, Ph.D. on March 9, 2011 at 5:23pm

Hi Susan,

Thanks for the kind words. I don't know why the physician or nurse wouldn't have mentioned the possibility of the stroke occurring first. I'm assuming that you will be enrolling your father in hospice. I've always found the sooner the better. And some recent studies have also shown that patients live longer under hospice care than in other settings.

 

Here's something to think about. Look back at your interactions with your mother from the time both of you knew she was dying. List all of those things that you believe made her death easier. Replicate them with your father. On some of the articles on my website and in my book, Lessons For the Living: Stories of Forgiveness, Gratitude and Courage at the End of Life, I list many of the things that I've seen to be helpful.

 

Take Care,

Stan

 

Comment by Susan F. on March 9, 2011 at 4:48pm

Thank you Stan, that information does help some.  I was actually hoping you would respond to my post.  I've been in the background reading the posts for a while before I joined yesterday, and I've been impressed with your advice and input.  I don't understand why no one said that to me in the last few weeks?  And it would make sense since mom had a couple of "TIA's" in the past 2 months. I'm typically the kind that jumps on the internet for answers and puts 2 and 2 together, but losing someone changes everyone's normal direction.  Well, I'll try to remind myself of what you said when the guilt comes over me again.  It will be a difficult one to release. 

I've read about the stages of grief, and I don't feel like I'm trying to avoid or deny my mom's death, but I have no sense of sadness at all and we were incredibly close.  With my father's death 2 or 3 months down the road, I just don't know what to expect with the whole grief process.  I have to stay together for him now.  The telling sign the oncologist told me to watch for (coughing up blood) started the morning of my mother's funeral and has been increasing since then, so we may be closer than we thought.

A week after my mother's death, a very close family friend died at 48 from a heart attack.  We've known him since he was born and his mother is mom's best friend.  Four days later my brother's closest friend also died from a heart attack.  Whew.  Perhaps I'm just numb.

Comment by Stan Goldberg, Ph.D. on March 9, 2011 at 2:42pm

Hi Susan,

 

Before writing on end of life issues, I was a speech-language pathologist. In 30 years I've never encountered anyone who had a stroke caused by external trauma. External trauma can cause severe brain damage, but I don't think a stroke. A stroke is caused by the temporary or permanent interruption of blood flow to the brain. And even if the injury was the precipitating event, your mother's brain could have been an accident waiting to happen. Something I think that is even more important is often when someone has a stroke, they can loose balance and fall. That's what happened to my wife, who fortunately recovered fully. It's possible that a stroke led to your mother's fall, and not vice-versa.

 

In 8 years of hospice work, I've had people fall on me, even though I was trained how to prevent it. When someone "lets go," often there's nothing you an do. Hope this helps.

 

Take Care,

Stan

Comment by Susan F. on March 9, 2011 at 2:18pm

My mom died about 2 ½ weeks ago. I took care of her for so long, and when she started declining last October I actually moved in with her and my dad. I only live 5 minutes away, but someone had to be with her all the time. The caretaker would be there from 8:00 a.m. to 7:00 p.m. and I would be there after work and throughout the night, and my husband and sons help out also. Dad wasn’t able to take care of her because he’s legally blind and was also diagnosed with advanced 4th stage lung cancer last November, with a prognosis of 6-9 months. Mom was doing pretty well, and we expected to lose dad first, but she fell and hit her head. She was gone in 3 days.

The thing that is hurting so deeply since mom died is that I was walking with her when she fell. She was still using a walker most of the time (a wheel chair from time to time), and she was unsteady on her feet. I always walked behind her with my hands on her hips to be able to support her and catch her if her legs buckled.

The morning she fell I was helping her to the bathroom. As always, I had my hands on her hips and was walking close behind her watching the wheels on her walker to make sure she didn’t run into anything. I was always alert and paying close attention when I was walking with her, but this particular morning I made a mistake. I took one of my hands off of her hip to rub my eye. At that same moment, the wheel on her walker hit the door frame. My eyes were closed when she started to fall, and even the mere seconds it took me to reach out was not fast enough. She fell sideways before I could catch her. She broke her ankle and hit her head on the dresser. The hospice nurse and doctor think she had a stroke after she fell, and she passed away 3 days later. Although her health was declining, her death was not imminent. Did hitting her head cause the stroke? Had she not fallen and hit her head would she still be with us? Did my mistake cause her death?

I just can’t image the guilt and incredible pain of that mistake ever lessening. Maybe I’ll learn how to live with it, but it will never go away. I know logically that it wasn’t my fault – it was an accident. I know that she may have had that stroke anyway. I know that I always took care of her with immense love and never felt burdened by it, that I showed her how much I loved her and that she knew that. I know that our love ran very deep, and that our love deepened even more during the time I was taking care of her. I will always cherish the time I spent taking care of her. I did a good job taking care of her. I have no regrets – except for that one mistake.

When the funeral home came to take her is when I fell apart. I threw myself on top of her and sobbed while I told her how sorry I was for not catching her. When I went back to the cemetery a couple of days after her funeral, I sat on the ground beside her grave and sobbed again while I told her how sorry I was that I didn’t catch her. I haven’t been able to go back yet.

While the guilt and regret of making that mistake is overwhelming, I’m confused that I’m not feeling any grief about her actually being gone. I don’t feel lonely without her being here, sad when I see her empty chair at the dining room table or the place she always sat on the couch although I find myself sitting in those two places a lot. I can be in her bedroom and around her things and I don’t miss her. I don’t feel the need to have something of hers to keep with me all the time to comfort me. These are feelings I’ve always felt when other people I love have died. We were so close and I don’t understand why I’m not feeling that sadness, loneliness or missing her, but instead am feeling almost indifferent. The very few times I’ve cried since she died are when I think about that one mistake.

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