Jenny R

Rejected by a Grief Group

19 posts in this topic

My husband of 36 years has advanced vascular (agitated) dementia; I see him every day at the skilled nursing facility where he lives.  He knows me completely, but he doesn't not know much else (such as where he is or why).  He is still very devoted and loving, but as a professor, father-figure, and a mentor to many family members and students over the years, I've noticed that at least half of them have disappeared since his decline - people I thought were family. Fortunately I do have some good friends, but I felt lonely so I called a local church about joining a grief group; they said I couldn't come because my husband was still alive.  I understood, but did see something darkly funny about being rejected from a grief group!  I thought of writing an essay about this "Good Grief: Rejected by a Grief Group."

2

Share this post


Link to post
Share on other sites

Jenny, my dear, I am so sorry to learn of your husband's serious illness, and sorry too that you've been told not to join a grief group through a local church. Some grief support groups are run by the bereaved themselves (peer-led support groups) which are fine, but the leaders may not feel qualified to deal with all kinds of grief, including (in this case) anticipatory grief. That does not mean that you shouldn't keep looking for a support group that meets your individual needs and is facilitated by a qualified grief counselor. You might try contacting your local hospice organization to see what, if any, bereavement support is offered in your community. Even a caregivers' support group might be better suited to your needs and offer you the understanding and support you deserve. That said, I want to point you to some readings and resources that may be helpful. (Note that many of these articles include links to additional resources):

Caregiving in Serious Illness: Suggested Resources

Anticipatory Grief and Mourning

Anticipatory Grief and Mourning: Suggested Resources

Anticipating the Death of a Spouse 

4

Share this post


Link to post
Share on other sites

I am so sorry, Jenny.  Perhaps they do not realize there are different kinds of grief, and don't understand anticipatory grief.  If you approached my grief support group (which I hold in a church) we would welcome you with open arms.  My mom had dementia and I understand that in many cases we lose the person long before they physically stop breathing, bit by bit.  With a husband, especially, all the roles he filled being going, each one of them losses in and of themselves.

We welcome you here and hope you will continue to come here as you are going through this journey.  We will listen and care.

1

Share this post


Link to post
Share on other sites

Yes, Kay, your post is a testament to the fact that every support group differs, depending on many different factors, including the qualifications of the leader as well as the composition of the group itself, which can vary over time. You are uniquely qualified as a grief support group facilitator, not only due to your years of experience both as a bereaved spouse and as a caregiver, but also having had more than a decade of experience offering valid and reliable bereavement information, comfort and support to every member who's ever joined our own Grief Healing Discussion Groups. 

2

Share this post


Link to post
Share on other sites

Thank you Marty and Kay for your support and understanding!  I appreciate it so much, and all the resources, too!

1

Share this post


Link to post
Share on other sites

Posted (edited)

Dear Jenny,

I am just so sorry that you had that experience.  That must have been so difficult!  Yes, perhaps they just did not understand the anticipatory grief you are going through and caregiver stress!   I have been away off these forums for some time but I can assure you from my experience that this is a safe and supportive place.  You are welcome here and I know we care. 

I often refer people to the Alzheimer Society here as they have different support groups for many different types of dementia here not just Alzheimer's  I encourage to keep searching for one that feels right for you.

Blessings, Carol Ann

Edited by sunstreet
spelling error
2

Share this post


Link to post
Share on other sites

If you message me your email address, I will send you a copy of Coach Broyles Playbook for Alzheimers Caregivers.  It's simple yet very helpful, I got it when my mom was diagnosed.

0

Share this post


Link to post
Share on other sites

One of my dear friends, mother to one of my daughter's life long friends, and also happens to be distant kin to me, she fought the good fight with her husband through prostate cancer.  Then he was cancer free, but this was not a regular fight, it was a long frightful fight (but they really all are frightful, some just not so long.)  

Now she writes everyday on FB, and I see her fear, her every thought reading between the lines of the proverbs and notes she puts on FB.  She is not a "writer/talker" like I am, but I can hear all the despondency, all the depression she now has.  Now her husband has dementia, not Alzheimer's, but it is something new every day.  Family is scattered to the four winds.  What is it about some of us, we won't, cannot accept help.  And, I so understand this on some level, I am just as stubborn, it is like the gene ran rampant in my family.  I remember my dad dying, could not get around, but my uncle came to "help" and my dad was able to get up and run him off.

My good friend who took me to the grief group, I have not heard back from her.  I won't reach out to her.  We are still friends, I am sure, but she cannot understand about me and the grief group.

The group was about "grief."  It involved mothers losing children more than widows.  In my grief, these women were in far more need of help than I was.  You join a group to be helped.  I left each meeting crying.  "Son found in the hunting woods, did not come by for the beef stew his mother had made for him, authorities would not tell her what happened."  After that meeting I did not go back.  

Mama always said there was a thin line between insanity and genius.  I did not know about the genius, but leaving each of those meetings, I figuratively was hanging on to that line, hanging from the bottom, hanging on with my hands and feet.  

Sometimes something that helps one person will make another hang on to life by a thread.  I don't know why that is.  

0

Share this post


Link to post
Share on other sites

Dear Marg M,

I hear your pain so loudly with your post.  I am so sorry for the pain you carry.  I know what you mean when you say some of us can not accept help.  I can only speak from my experience with that and the reasons that were behind me not accepting help.  For me, in the beginning of my healing journey I truly believed I was not worthy of help.  I believed also that it was a weakness to need help.  And my self-esteem was non exisistant.  I now know that those beliefs I had back then were a result of the violent abusive environment I grew up in.  It was normal that I had those beliefs due to the abnormal things that had been done to me.  And so once I came to know this through therapy and alot of self-help reading for  all the abuse I expereinced growing up my self-worth developed and is ever evolving and growing, and I began to see not only was I worthy of help but deserved it to.  I now know that in fact it is a strength to know you need help and to ask for it.  This how it was and is for me :)

And yes I have found that to be true as well that sometimes what seems like a Godsend for some for others it is the opposite.  My hypothisis on this is that we all have different life experiences and so what is helpful is going different for each of us.  This is my thinking on it anyways.

I also hear you how sometimes greif support groups seem not like the right fit for us.  This was definitely the case for me.  I did keep trying though and I did in the end find a group that was a very good fit for me and am still in touch from some of the participants from that group.

Encouraging you in your journey!

Blessings, Carol Ann

1

Share this post


Link to post
Share on other sites

Looks like I did it again...lost my post I replied to Marg.

Marg, I can't understand for the life of me why your friend would cease contact because this group was not a good fit for you.  I'm glad you are strong enough to know what is right for you and do it, even without support.  :angry2:  Nope, don't get "friends" like that!

0

Share this post


Link to post
Share on other sites

I am a Baptist, always have been.  I have been teased about we think we are the only ones going to heaven, and I have walked out of a service downing other religions.  I am not a good Baptist.  We both know some sanctimonious people, but most times they are really good people.  This woman is a really good person and is not judging me to my face, not talking about me, but in her own way she feels I am not trying to help myself.  I admire her faith, but I do not admire it enough to live like she does.  I wish I was that good a person, and she really is good, she just does not realize she is judging, and I won't argue that with her.  I am jealous of her faith.  She had a long seven years of totally taking care of a  bedridden husband, every movement he made, she did it for him until he jerked out his own feeding tubes, etc.  

I'm afraid I was a disappointment to her because she learned sometimes you cannot help people, they have to help themselves.  I do wish I had her faith though.  When you lose someone like your best friend, losing other friends does not matter much.  

0

Share this post


Link to post
Share on other sites

I am Baptist too, but our church isn't sanctimonious or judgmental, thankfully.  I guess it depends on the people in the church.  I wouldn't be in it if it was.

I'm sorry she is judgmental of you, we're all different, and we all cope differently.  You're doing your best, no need for anyone to judge you.  It is true we must help ourselves, but in our own time frame.  We all have to figure it out for ourselves.

2

Share this post


Link to post
Share on other sites

Her church probably has 300-400 or more, two Sunday morning services.  I came from a small church.  We branched off from a big church.  Good people all.  I'm afraid I probably am sanctimonious and a hypocrite at times myself.  Certainly I do judge people.  Just making an assumption as to the reasons my friend is absent from my life right now is judging.  She has had heart problems, and perhaps it is me that should be checking on her.  That is one of my biggest problems now, it is hard for me to reach out to help people.  I have two close friends that have reached out to me and one is very ill.  Sometimes I want to run and hide from everyone.  My flight or fight response has turned to flight, but my size 7 feet cannot run from some things, even though I want to.  I wonder why that is, the fact that you feel trouble coming and you want to run away.  Yet, you know if you run away you would be hurting someone and you cannot let them even know you want to run.  

A lot of times I just want to leave, cannot show that. 

1

Share this post


Link to post
Share on other sites

As I mention in this article, Marg, friendship is a two-way street that requires an investment of time and energy from both parties to keep it going ~ and when you're struggling with the work that grief requires, you may not have the energy, interest or desire to "be there" for your friends ~ at least, not in the way they may need you to be. Sometimes we need to tend to our own needs first ~ and right now, caring for yourself and your granddaughter must be at the top of your priority list. 

5

Share this post


Link to post
Share on other sites

"I think it boils down to this: When dealing with others who aren’t living up to our expectations of how we think they should “be there” for us, we have three choices: We can choose to bear with such people and simply ignore their shortcomings; we can assume a teacher's role and enlighten them about what we've learned about grief and what we need from them; or we can look to others who are more understanding to find the support we need and deserve."  (Marty)

Marty, we are faced with this in a different way, in a much sadder way, in a way none of us know how to respond to in our dearly beloved Butch's family and our dear Butch.  All of our sorrow pales in comparison to his, and yet we really do not know what to say because words do not heal.  Time does not heal, though RK might be right, it provides scar tissue.  

We all know I am "different" and that can be taken good or bad.  I love my friends, I know they all want to have lunch with me, they all want me to come to socials, and I am not one that will miss Billy at socials, he would not go.  Maybe I have taken on his persona.  I honestly don't want to talk to my friends.  They have given up in most cases.  They are not angry with me, they just "let me me" and I so appreciate that.  My feelings are not hurt.  My friend said "now you can find yourself."  Damn, I never was looking for myself.  I guess I need to practice holding my head up, looking people in the face (who knows, they might know me) but with my memory I am not sure I will remember them.

Billy's and my friends all those years (he would not be friends with mine, he was jealous that they had known me when he didn't), yes he had a problem.  But, his lifelong friends, the ones that were my friends also, maybe that is one thing that might bother me.  Maybe not.  I probably don't want to see them either.  

I wonder if this is maybe metaphorically digging my hole and covering myself up with the dirt, maybe disappearing like Billy did.  If so, I'm sure I have to quit digging that hole. 

I'm sorry, I think I hijacked this post.  I will be more careful.  

0

Share this post


Link to post
Share on other sites

Dear Marg

I see your pain and I hear you.  I am just so sorry that we are all in this collective ocean of grief for a myriad of different reasons.  The pain is similar though and sometimes the ocean of grief is a torrent and we feel we are getting tossed about and only coming to the surface a short while to get some air and then thrown into the torrent again.  It is a difficult ocean to navigate but it can be accomplished and that is one thing that I know from my own experience with grief.  Now is the time to be as gentle with ourselves as we can.  It sometimes feels like a monumental task just to get dressed in the morning.  I encourage you to put yourself and your granddaughter as the priority and put what energy you have into that.  What others think or feel is theirs to navigate. 

Blessings, Carol Ann

3

Share this post


Link to post
Share on other sites

You are a wise woman Carol Ann.  Thank you.  I wish you the best also.  

1

Share this post


Link to post
Share on other sites

I don't see it as judgmental for you to wonder at your friend's reaction.  It's natural to try and figure things out.  

I agree with Carol Ann, focus on you and Brianna and doing what is right for the two of you, everyone else will fall into place...or not. :)

1

Share this post


Link to post
Share on other sites

Dear Marg

Thank you so very much!

Blessings, Carol Ann

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now