What she may want to hear from me?

DaughterMom · May 2009

I recently had a very good talk with our palliative care social worker. One thing that I told our social worker is that I did not know what to say to my mother when she said things like "If I'm still here", . I told our social worker what I don't say, I know better than to say, "mom, don't be silly, you'll be around forever.", but I just don't say anything. She suggested that I say, "well, that's a possiblity, what should we do about that?...or something along those lines depending on the situation. Something has to be said, the social worker told me that not addressing it could be adding to the anxiety on my mothers part, and that it needs to talked about. I had this conversation with my father when he was visiting last week, and when he told my mother that he would be back near the end of May, she said to him "I'll probably be gone by then", he told me this as I walking him to his vehicle, and he was thankful that we talked about it earlier and he used my line, so to speak, and he was able to get through what could have been an awkward, tearful good-bye.

I guess what I am asking, is what should be said when this comes up in conversation again. We cannot keep saying, "Well it's a possiblity but...." I need some help as I sometimes have a hard time talking about my feelings openly, and I am wondering what my mother may want to hear from me?

sparkie · May 2009

DaughterMom,

I really don't have any advice; our DD is just the opposite. At least outwardly, she refuses to accept that she may be dying.

My guess is that each time your Mom says this, she's trying to initiate a conversation, and this is the only way she know how to start it. A simple "Mom, would you like to talk?" might be all she needs to voice her concerns. She may want to tell you how she's feeling more than she wants to hear from you. But I don't know--just guessing. This is uncharted territory for all of us.

Hugs to you. This is so hard.

saint · May 2009

Hugs DaughterMom.

I am the mom with bc mets & I often say "If I'm still here."

I am not sure what your mom means when she says it. I can only speak for myself. When I say it it is to address the elephant in the room. My say it to remind myself & continue the process of acceptance. I also hope to engage ppl in conversations about my demise & help them out of denial as well. It CAN be a positive conversation, but it depends on where SHE is with it. If she is angry she needs to let that out or she could be sad to think about all she may miss. She may just want to be reassured that she will be missed......Counseling helped me figure out where I was with this issue. Even if she doesn't go it may be helpful for you! I'm sure this is VERY hard for you--I've always said I'd rather be the one WITH cancer than the one watching a loved one walk the road!

Prayers for you & your family..... Be well & stay strong

hollyann · May 2009

I recently lost a sister to emphysema...At first when she started saying "if I'm still here" I would kinda laugh it off and say something like "Don't talk that way you know you're gonna be fine!"........But after a couple of months I realized she wasn't going to be fine so when she would say "If I'm still here..." I would just say "God, I hope you are still here but if not you know I love you"........Or I would say something like "Why do you think that way?" and she would tell me how she felt and I would be sad but I never cried in front of her......She would tell me how upset she was that she couldn't go out much anymore and how she couldn't walk anymore and it would just break my heart........The hardest thing for me talking with my sister and hearing her say things like "If I'm still here" or "Oh I won't be here for that" or something like that was knowing that it was true but wishing like the dickens that it wasn't.........I just let her take the lead in the conversations and if she did say something about not being here I would just tell her that Mom and Dad would be glad to see her and so would all our brothers and sister who had gone before her.....She wasn't a religious woman but in the end she made her peace and went peacefully......I hope you can find the peace I have found since the realization of my sister's demise......It wa shard to accept at first but once I realized how bad off she was I was more receptive to her passing........May God bring you peace and comfort........

dreamwriter · May 2009

I think that way but dont say it because it would upset my family. We dont talk too much ahead but someone will say something like at Christmas.... and I would think.... well if Im still here..... but I wouldnt voice it out loud. And to make matters more confusing, I appear to be getting stronger, better. I have already passed my expiry date by years. So now it seems I could go on and on.... It is the uncertainty that stresses and causes that phrase to come out.... There is no guarantee that I will be here for Christmas.... we all know that someone can get an infection that causes everything else to break down.... and gone in weeks or days. In fact I have seen this, and it scares me to know that I could do the same. Enough said.

DaughterMom · May 2009

Thank you for your response to my very tough question.

Saint, as I move towards acceptance, I am learning to just follow my heart and do and say what I know. My mother has always been a little quiet about her feelings and not a very touchy huggy person. I know that just my presence gives her comfort, even if we don't say a thing. The other day I told her that I will miss her, which was the hardest thing for me to say outloud to her, but it was true joy afterwards. The elephant in the room has been adressed, and she and I are in good place.

Sparkie, I was so saddened to read your post about your daughter. It is rough, but it sounds like you will be in good hands with hospice helping along the way. I wish we had access to hospice in Canada like in the states. They truely sound like a godsend.

Hollyanne, I am sorry for your loss. I often tell myself that I am not the first person in this world to be dealing with this, and that many many people got through a very difficult time, and I just have to keep chugging along, as hard as it can be. I will draw on your stength.

Dream, you just keep going and going and going, and whiz on by that energizer bunny along the way!

dreamwriter · May 2009

I am a little confused by the statement that in Canada we do not have hospice like in the US. What is the difference. I have agencies fighting to provide services. Hospice Toronto has been very good to me along with CCAC. I know that I have access to hospice care in my home as well as in hospital. I have in fact picked my palliative care hospital. I can go there to have my meds adjusted, with medical staff monitoring any adverse reactions, give my family a break or spend those last days in comfort (I do not want to die at home).

DaughterMom · May 2009

Dream, I think I may have assumed too much. My mom lives in Prince Albert Saskatchewan, and the help we have been getting is from what healthcare calls Palliative Care Services, meaning her Dr., Social Workers, home care/ nursing care. I don't know why I said that really? When I read the pamphlet again just now, it seems like it is equivalent, but everything I read about Hospice from the US....books, websites, this forum, even movies...the level of services seem so different. I read about nurses/trained people coming into to house just to be the family and patient, or to monitor overall health, pain controls etc. Mom has a nurse that comes in twice a week to change her dressings. Maybe, we just have not really experienced the full extent of the Palliatve Care services yet? Or maybe, I just have to make the call and ask. I think we are doing ok so far, but it just sounds so nice to have someone come in and check up on us once in a while, you know?

Fitztwins · May 2009

I say this a lot..."if I am not here". I guess I would like for my feelings to be validate.

Plus a little humor.

Here is the last exchange between hubby and me:

He planted a dozen of pine trees in our yard.

Hubby: They should be the right height in 20 years.

Me: Yeah, Like I am even going to be around

Hubby: you will be around.

NOW WHAT I WOULD HAVE SAID if the ROLES were reversed

response, "well, then we could spread your ashes around! the trees"

Seriously, acknowldge the fact. Maybe "Well I hope you will be mom, if not, then we will"

You are a good daughter. Bless your heart.

saint · May 2009

Hugs all---it is so hard to know what each person needs to hear! I am so glad we have each other to bounce things off.

I have a young friend who bonded with me in 30 minutes when we had to answer a questionnaire together (I was standing in for his uncle who couldn't attend.) I answered honestly about how it feels TO ME to be terminal & this HS jr jumped up & hugged me----said NOW he understood how his aunt felt since she had been battling cancer for years but NEVER talked about it! That was 6 years ago & he still never sees me that he doesn't hug me up! So maybe the thing is not just what is exchanged between us & our loved ones but what we tell OTHER loved ones in lieu of their conversations with their survivors!

Be well & stay strong

dreamwriter · May 2009

Wow... now why do cute high school boys not hug me when I see them?

saint · May 2009

LOL he's now a cute college grad & I pray I'm still hugging him when he's a cute bent old man!!!!!!!! HUGS

sparkie · May 2009

Daughtermom,

So far hospice has helped primarily with monitoring pain and meds. We are waiting for our social worker to visit. I think that will add another level of care that we so desperately need. (I'm assuming they will be able to help us with the tough emotional stuff, as well as the more practical things that require our attention.) Meanwhile, our hospice nurse was wonderful today. She took care of the meds, then sat with DD and talked to her about getting her affairs in order--mostly about making sure the kids' future is secure. She didn't word it that way; she was very careful and gentle, and DD was very receptive. DD still can't talk about the elephant in the room, but she talks around it, so we know she's thinking about it. I haven't been able to tell DD that I will miss her; I'm not sure she's ready to hear that yet.

DaughterMom · May 2009

Sparkie, in due time my dear, you will find the words and the right time. Once her affairs are taken care of, then she may want to settle into a routine and enjoy life.

Mom was dx stage IV right from the get go, 6 months ago. She refused chemo, so I really needed her to talk about her understanding of the dx and her prognosis at the beginning, because I needed to know that she understood. I found that with my mom, we got all the nitty gritty stuff in order right way, her small saving and her pension fund and talked about her wishes for her funeral. Then the conversations stopped, which is fine, I know mom understands. We just try to enjoy each day, as monotonous as they seem to be these days, we just enjoy life the best we can.

I cannot believe this started 6 months ago, where did the time go? If someone told me 6 mths ago that my mother would still be alive today, I would not have believed them. My mother was so sick, and in so much pain back then, it was a scary time, and in my mind, I really thought we only had a couple months. But once her pain and her kidney function were under control, things just got a little better.

My mother is getting weaker and weaker, and now spends most of her time in bed, but she is still doing ok. She now has breakfast at noon, but that is ok, as long as she gets up to eat a little bit, and then she is up again around 7ish for some soup. Today was a good day, so I was able to give her a hair wash and a sponge bath. Though, I am noticing that she seems to be living not day by day, but hour by hour. She is constantly watching the clock for when she is due for her next pain killer. She is forever counting on her fingers, and asks me over and over when she took her last pain killer. She tells me she is not in pain, just wondering when she will be taking her next pill. I wish I could ways to keep her mind occupied, but she does not like noise at all, so no tv and she has so little energy to keep a good conversation going. I'm sure I would drive her banana's if I started reading to her! Well I am babbling away here now. Time to say good night, sweet dreams.

sparkie · May 2009

Thanks, Daughtermom, for sharing your experiences. You are a wonderful daughter and I'm sure a great source of comfort to your mother.

Today was a long, busy day. We took DD to her son's soccer game about 70 miles away--and afterwared to lunch with extended family. It was hot and tiring, but DD did well. (We took her wheelchair so she didn't have to do any walking, which has become difficult and arduous for her.) We were so glad she was able to go; her son's team won the State Cup championship.

It's late now; it's a warm night and DD is sound asleep on our backyard deck. I'll have to wake her and get her to bed, and she will not be happy. She hates that we run her life now. Earlier this evening, she was trying to cut some doggie treats which she placed on her bare legs, then began to cut with a paring knife. We had to stop her. She's taking heavy doses of narcotics for pain (via a pain pump), she has brain lesions and has had trauma to her brain with several cyberknife treatments as well a a craniotomy. We can't even leave her alone any more. She walks very slowly and unsteadily. Still she cannot understand why she can't go shopping by herself anymore. I think she's having a very hard time accepting that she'll probably never be able to go back to the way things were. I'm sure it's very hard for her, and to add to the problem, I often become impatient with her. I need more grace!

EWB · May 2009

My prayers are with you

luvtotravel · May 2009

Sparkie

I pray for the grace you need for your DD. You are a kind and loving mom.

saint · May 2009

Sparkie, It seems quite obvious from your posts that you are gracefilled. Don't be too hard on yourself, hon!

I believe that somewhere deep inside she knows......

Prayers for peace & comfort for all of you.

Be well & stay strong

Alpal · May 2009

Think about you everyday and wonder how you all are doing. My daughter refused to discuss her impending death with any of us and I was sad about that. I did find out after her death that she had discussed it with a few of her friends. I think she was trying to protect us, which certainly was consistent with her personality. All I can tell you is that you will get through this and the children will be a wonderful comfort for you. Do not be surprised if they don't show outward signs of grief. A wonderful counselor after several sessions with our GD told me that she simply wasn't ready to deal with her mom's death and that it might be years before she was ready. You sound like a wonderful woman and I agree with Saint that you are filled with grace. Tender caring thoughts and hugs to you and all your family.

What she may want to hear from me?

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