Feedback on After Care…

After my blog post about after care, (find the post HERE) I had a lot of responses.  Some were comforting…some people had experienced similar situations, some were in the hospice field and told about how they handle after care.

One was none of those things.  This comment came from Gayle R Tucker.  (I am putting the whole name here as there are others who comment here who go by the name Gayle and I don’t want to link them to the commnet).  Gayle wrote:

I am sorry you are so cold about something people were trying to do to make you feel as though they could serve as a lifeline or connection if you needed that. Instead you just explained their contact was only acceptable if they worded their contact in an exact way to appeal to you. Hospice nurses are so busy but you think they should be the ones contacting you. Did you send a note thanking hospice for what they did for you and your family. Grow up Jo. These folks were doing the best they could. Don’t attack an honest effort.

I’m not going to say a lot about the comment.  So many of you already left a comment on the post telling your opinion of Gayle’s comment.  Like me, others are entitled to comment, even if the way the word the comment is awfully rude.

All of this is part of what happens when you open yourself up in a blog post.  I think really hard about things and consider the consequences before I write a post.  Sometimes I miss…I fail, but I didn’t think I had with this post.

I do want to point out to Gayle that our family was WONDERFUL to hospice.  We know the gal that helped us with Kramer during hospice.  We were acquaintances before we ever needed her care.  We donated all of Kramer’s unused items to hospice….he only had care for two days and used very little of it.  We helped load it.  We later called and asked if anyone could use the unopened boxes of formula for feeding tube feedings.  We donated all we could to hospice and yes, we did send our thanks.

We sent out thanks to all of the groups who helped with Kramer.  The neighboring Fire Departments all got thank yous and donations.   We sent thank yous all around….we shouted out businesses who served our family via Facebook.  We took pictures and wrote how pleased we were with the monument company…we shouted out the local restaurants and catering places that brought us food for free.

We are those people…the people who are overly thankful.  Every “honest effort” of comfort that came our way, we appreciated and thanked.  There might have been a casserole that came our way that didn’t get written down and a thank you sent but if that happened, it was in the confusion of it all…we tried the best could.  Those of you who have been through this know that missing a casserole is something that could easily have happened.

On the flip side of things…I did get some wonderful comments.  I got an email from “another Iowa farm wife”:

Hi, Jo! I continue to love getting your blog via email. Thank you so much for writing it!!

Today I read about the phone calls you had been getting in regards to grief.  You mentioned needing to “set that aside” during your workweek— When I was a (younger wife) a colleague of mine had been widowed at about your age. She was a middle school teacher and when I met her, it had only been a couple of months since her husband had died. I met her while at work.  I tried to (carefully?) offer condolences and also knew we had a classroom of 7th graders….

She was just the loveliest and told me how she had deleted every last thing off of her calendar on Sunday afternoons for the foreseeable future. “Sunday afternoons are for crying. Can’t during the week, I get it all done on Sundays.”

I was a young wife (prob late 20s) and I had NO idea what to think of this, except for knowing what a wonderful professional kind caring teacher she was. I decided this grieving process she had adopted was probably brilliant. After hearing your story about the phone calls, I’m now sure she was brilliant.

No doubt the timing is difficult just running into people you know and having “how are you doing” questions come up when you’re trying to get stuff done/be in public. Can’t imagine how invasive those phone calls must feel. I think I would feel just as you do.

Again, thank you for sharing about this. These stories are so powerful.”

I was so pleased to get this note.  It really hit home for me.  This is what I’ve been doing, but I guess didn’t even realize I was doing it.  For me it’s not always Sunday night…sometimes Saturday but it’s on the weekend.  It’s when none of the kids are around.

I compose letters to him in my head.  I listen to music that reminds me of him.  I ask the why me questions?  The whys to God.  I wonder if I can figure life out without him.  I wish I didn’t have the heated mattress pad and had him instead.  I drive his vehicle that still smells like him.  I remember the important meaningful talks we had to and from radiation appointments.  I remember cussing having to patch his jeans now wishing I could patch them.  I remember when we were young and dumb when we thought we knew it all.  I remember going on “farmer dates”.  I remember listening to talk about how he loved his job.  I remember his jokingly teasing me about how “not practical” I was.  I remember him sweating under his eyes after what he thought was a good supper.  I remember and cry and wish for things I can’t have.  Sometimes I wish the cemetery.  It is my Kramer time.

Here’s one of the latest songs that gets to me.

The link is HERE if you don’t see it embedded into this post.

Then I go to bed and wake up the next morning….the whys and what ifs are at bay for another week.  I have work to do.  I have people who need me.  My big girl pants are pulled all the way up and I move on for a few days until the weekend rolls around again.

All of us who grieve find our own way through.  The dedicated weekend time, for me, works.  After reading “another Iowa farm wife’s” email, I found out I’m not alone.  I wonder if that’s why I felt the email and phone calls that I told you about earlier in the previous blog post, bothered me so much too.

I know many of you are likely hot and would love to blast Gayle for her comment, seriously, it doesn’t bother me.  I’m not hurt.  I’m not going to quit blogging because I can’t handle a poorly worded comment.  I’ve had the ultimate kick of watching my husband die.  This is nothing.

 

22 thoughts on “Feedback on After Care…

  1. Mary

    Jo, The world needs more people like you! Not only are you Kramer Strong, but you are so practical and so tolerant of people who are not as nice as they should be. Thanks for a wonderful blog that I read everyday.

  2. Ellie

    I read Gayle’s comment when she first wrote it and I thought “Wow that harsh!” I find it impossible to understand that she would criticize you for feeling the way you do. You feel the way you feel. No one can tell you how to feel. She could have pointed out the good intentions of the callers but I doubt they were sincere in their “concern”. I think it was part of their job description and they had to do it. They surely could have been more diplomatic in choosing when to call rather than in the middle of the work day! You have said over and over and over how kind and thoughtful friends and neighbors have been. People do things for you because thy want to, not because they are looking for thanks. Perhaps she is a new reader and missed all those posts. I agree with you 100% that the phone calls and email were intrusive and sounded like duty calls rather than sincere expressions of concern.

  3. Kathleen R Robin

    When my father died my mother and I got phone calls from a Hospice lady and if were not depressed before the call we sure were afterwards. She had such a depressing voice we were both very happy when she stopped calling.

  4. Janine Baker

    You hold your head up high! I have not had the unfortunate loss of my husband yet, but when I do, I will have your words of experience to get me through. I just do not understand when people feel free to criticize others. If I disagree, I say it to myself and leave it at that. I will just thank you for your common sense thoughts, ideas & loving heart that you share with all of us! Hugs to you,

  5. Paulette Voit

    As one who speaks with experience, those hospice calls were horrible. I used to cry afterwards trying to pull myself together again. We know they are there if we need them, but it should be our decision, not theirs. God bless you Jo, I know this Christmas is going to be tough. I wish I could tell you that they get easier, but they really don’t.

  6. Lisa B

    The local hospice sends a condolence card and informs you of the general grief group meeting time. From that group I learned they offer a 6-8 week session working through a book. I went to the general group several times and my schedule never lined up for the book group but the leader called me at the beginning of the 6-8 week session several times. She was always kind, sensitive, and asked if I wanted to be called for the next gathering. I finally went to a Grief Share (check it out online) through a local church that fit into my schedule. I never felt the hospice coordinator of the grief group was bothering me and sometimes I had a question she could answer there on the phone. I finally felt like I didn’t need the hospice grief services and told her so. She said great and if that changes not to hesitate to contact them. A wonderful group and so is Grief Share.

    After 6 years I still have weekends when I grieve but my day is Saturday. It is now once or twice a year, less than it was and not all day as it was. I’m thankful for the healing process that I’ve seen and felt in me.

    Everyone grieves different. And it isn’t right to judge how someone else does it. Just because you do it different then me doesn’t make it right or wrong. It makes it you.

  7. Norma

    Thankfully I have not had to go through what you have,Jo. But I related to what you said. I’m pretty private. I believe you spoke about the callers in a fair fashion. You did not demand but simply voiced what would be meaningful and timely to you.
    You are levelheaded in your blog. Keep up your sharing and thank you.

  8. Gayle Shumaker

    Jo, thanks for using Gayle’s full name. I read your post and was so angry I couldn’t respond then. It is easy to see you are a warm, loving person by reading your blog and it is further reinforced if anyone reads your daughters blog. I understand why this song gets to you it had me in tears but for me it will be my husband as the surviving spouse. In many ways we have gone through some of the stages of grieving. I don’t have cancer, I have an autoimmune disorder that causes vasospasm in the blood vessels in my brain and heart. After 4 strokes 3 that occurred overnight we’ve had to accept some morning I’m not going to wake up. Anyway, please don’t let the nasty people get you down, they’re not worth it. I know this will be a tough for you but I am still wishing you aMerry Christmas. I know you will find happy moments with your family, treasure them. Hugs

  9. Janet R

    Jo, you were right to stop the calls when they didn’t work for you. Everyone is different with different needs and you were smart enough to identify those calls as being more hurtful than helpful. The bravery it took to call and request that the calls stop is phenomenal to me.

    Gayle’s comment made me upset so I’m glad it didn’t affect you that way. For someone to negatively comment against someone so sweet and carung as you are just makes me cringe.

    You are the best! Thank you for all you share with us.

  10. Gayle

    No Jo, you missed the point of my comments. You responded to these efforts from contact personnel as they were something out of an automated message. These are real people who are charged with doing the best they can with what they information they have. Fifteen years ago they did not have anything. I know. My father’s death was similar to Kramer’s. Very quick. Raw and savage in its speed of destruction My mother was crushed. No amount of support from her children helped. She said she felt so alone because after my father died all these carers disappeared from her life and she faced grief on her own. Was she weak? Did we not see the signs? Did we not do enough? No answers but we know she felt as though she had no one to turn to. She chose a bullet for whatever reason. I am part of a support group fro people who lose someone for that reason. We try to help. We all try to show care and concern and we certainly honor a person if they ask us not to contact them again. But, at least we reach out.

  11. Kathy Goodnight

    Oh Jo, I agree with you, when my husband died I didn’t want to listen to or talk with some people. Just wasn’t ready to hear or be polite with people.
    I even had trouble talking with friends. We all grieve differently and react differently
    I do understand what you were doing and saying perfectly.
    Thanks so much for your words for your kindness and your love of people.
    Just Remember your Kramer Strong. With many hugs Kathy G

  12. Judith Fairchild

    Jo you were so right in saying that the ultimate kick is watching your husband die. In some ways it’s a good thing as you are there with him. In others not so good. I have had clients who had gone home to change or rest . Getting the phone call from the hospital or nursing home about their passing is worse, in my opinion the one who left to take care of necessary personal needs always regrets it.

  13. Rose

    I saw Gayle’s post and I found it very offensive. We all grieve in our own ways and as I said I to did not like the phone calls. If the hospice nurse my mom had had called me I would have understood. Mom was on hospice for 18 months and she got to know us well. But strangers called to “help” and “ask how you’re doing” I found invasive. I know we were very thankful to hospice for all they did but I think when you ask them to stop they should. I did not find her comments helpful at all.
    Keep up the great blogging! You give a voice to many.

  14. Jo Post author

    Gayle-I am sorry for your loss..the loss of your father and your mother. I could never imagine what you went through and how that affected you. I am glad you’ve been able to work through it and be part of a support group that helps both you and others. It’s great that you do reach out for those that need it.

  15. Jo Post author

    Gayle Shumaker, I’m so sorry you have to deal with your health problems. Thank you for the kind words and wishes. I agree, when you know death is around the corner, people do some of the grieving along the way. I was so glad I got to do that with Kramer. Blessings to you…

  16. Jean

    Jo I love your blog and this post. I know in your situation I would not want phone calls. A possible solution would be for patient’s loved ones to be asked if they want to opt in or opt out for calls.

    In my mid forties I had breast cancer with a resulting mastectomy, chemotherapy etc. People trying to be supportive would tell me I should go to a support group, the stages of anger and grief I should go through and how any woman would want her breast reconstructed. Non of this was at all true for me. I just wanted to get on with things and work at getting back my memory and cognitive ability. I have been very fortunate and not had to go through anything even close to what you have been, and still are going through, but I thought there was some parallels about how other people should not just assume they know the best answers for all other people. Everybody is different and their differences should be respected.

  17. Kim LeMere

    Grief is a very personal journey and what we each need is also personal. Jo, you are on your own path, traveling it at your own pace and needing what you need to make the journey. Maybe its a good cry, maybe it to drive his vehicle and yet for others its a call from someone to discuss grief or a small note in the mail. I appreciate the fact that you talked about this with all of us, we are better for it. Hugs to you Jo

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