The essence of living in limbo

M1

So my son and his fiancee are planning a destination wedding in the spring. This ought to be unadulterated happiness....but honestly, my first thought is how much easier it would be if my partner is gone before then, how much more I could enjoy it if I didn't have to worry about getting back. And of course I feel guilty for even thinking it, much less saying it out loud. An ugly truth. The hospice folks warned me about wishing she would die faster. The need to move on competes with the prolonged sadness and grief.

midge333

I am sorry you are going thru this. I have so many similar feelings… So hard!

trottingalong

I can understand the feelings, especially at the point you and your partner are at. You are so great at helping all of us with your thoughts and wonderful advice. Think what you would say to us in the same situation.
Whether she is still with you or not, plan on allowing yourself to enjoy your son’s wedding without guilt. Life is too short.

annie51

We can all relate to those feelings, including the guilt. Our hearts go out to you!
Would you explain what you meant by “the hospice folks warned me about wishing she would die faster” - are you saying they knew you would wish that or to caution you not to wish that?

SDianeL

she would want you to go and celebrate life. Go in her honor. We must live our lives to honor them.

CatladyNW

You have no reason to feel guilty, what you are feeling is something all of us in the same or similar situation are feeling. You have sacrificed so much to make sure your DW is cared for and not alone. You should enjoy this happy occasion without any guilt. Remind yourself of what your DW would say if she did not have this awful disease. She would want you to go to the wedding and enjoy every moment for you and in honor of her as well.

Denise1847

Dear M1,

Please don't feel guilty for being human and wanting your life back. You have done everything you can for your DW. She would want you to go and relish the experience. Do this for both of you. We all have those feelings, especially when the person you knew has long ago left the body that just hangs on. Thank you for always helping so many of us. We are all rooting for you to find joy and to live again.

Buggytoo

So many complicated emotions visit us on this journey. I will be hoping your time at the wedding is joyous and freeing. Your wife would certainly want that if she were dead or if she's still lingering.

fmb

@M1 Don't feel guilty for what is a perfectly normal feeling. None of us want to see our loved one continue to suffer, nor do we want to prolong our suffering as we wonder just how much longer we will have our lives on hold. Your partner would want you to celebrate your son's wedding with joy. Go and make positive memories that you, your son and his bride will treasure the rest of your lives.

M1

It helps so much to hear your feedback..and yes, you are absolutely right that she would want this for all of us. We will definitely make a toast to the absent loved ones and celebrate the continuity of friends and family, past and future.

hiya

Enjoy this day celebrating your son and his bride. Your wife would want you to go.

Karen711

M1- interesting comment from hospice. However, you are sad and grieving now, and you will be sad and grief stricken after you partners departure. I join the others in encouraging you not to feel guilty for your thoughts and emotions. We all have shared the same or similar thoughts emotions, feelings- it is all a part of the process and no way around it but to be in it and travel through it. You deserve to celebrate your son and his fiancée, your partner would want that for you, and your son deserves to have his dad fully present at his wedding.
I wish you the best!

Karen

Elshack

M1, I know your dear partner was very close to death a few months ago and yet she pulled through. I hope you can make plans to go to your son's wedding and if your partner is still living by the spring that you can take the time to enjoy this important day in your son's life and know that Memory Care is taking care of her and hospice. Do not feel guilty wishing that the end would come sooner rather than later. We've all been there, believe me.

charley0419

I’m so glad to have read all these comments as now I don’t feel as guilty. Again terrible illness

harshedbuzz

The experience of losing a LO by the inch is profoundly excruciating and not something a rational mind would hope to extend. It would be like stubbing a toe, waiting for the pain to subside and jamming it into the chair leg a second time.

I hope you can enjoy the celebration and your duties as parent-of-the groom fully.

HB

CindyBum

First…congratulations to you and your son and his fiancee. Isn't it something how life keeps going on in this joyous direction?

I would feel so guilty too and certainly do when I occasionally think that it's a bit of a blessing, of sorts, that my DWs dementia is progressing rapidly. Her suffering is already so hard for her to bear. You have been carrying this weight of her and your suffering for so long now. What a terrible burden.

Of course we don't want the people we love the most to have to suffer like this. Your feelings are normal, even if they are incredibly painful. I hope you know that your thoughts come out of a deep love for you DW, because they are.

White Crane

M1, I'm sorry you are feeling guilty. I've had similar thoughts and it is hard to not feel guilty about them. We're all human though and thoughts like this happen. And it is like being in limbo. My daughter and son-in-law moved to Boston three years ago and I still haven't seen their new house! DH was too far along for me to take him on such a long trip and now that he is in MC, I'm afraid to be gone for more than overnight since he has had some rough times lately. Nothing about this disease is easy and there are no easy answers. What we do is make the best decisions we can for them and for ourselves. I hope you go to the wedding.

Brenda

Jeanne C.

I’m glad you have a happy occasion to celebrate. She will be safe and cared for. I completely understand how you feel. I have found the “not knowing” and needing to move on to be the hardest parts of hospice.

CampCarol

Thank you for always being so forthright and honest in your posts. More often than not you write exactly how I’m thinking/feeling. I haven’t been to a wedding, funeral or any other momentous event in years due to fear and guilt, and it’s very hard not to feel resentful at times now. Congratulations on your son’s engagement…I hope you go to the wedding knowing that she would want you to be there and have some peace of mind that she will be well-cared for in your absence.

Beachfan

Go without guilt and plan to enjoy yourself without guilt. This disease will continue its unrelenting pace whether you are by her side or in Timbuktu. You have done all you could for her for as long as you could. You deserve some happiness. I suspect your kids are on pins and needles, walking on eggshells anticipating your decision. I’m pretty sure I know what they’re thinking ; they just want your happiness, your company at a joyful event, as does your DW. Go, have fun, but as “mother of the groom”, don’t forget your wallet! 😀

Dio

Dear M1, you have nothing to feel guilty for. The living must go on living, and living to the fullest if at all possible. Congrats to your son, and you! We are all here in this lifetime with a purpose even if we don't know what the endgame may be. No regrets even as we face the multitude of challenges. Don't allow the disease to destroy more than one person. Go and enjoy the moment of happiness for your son and his bride (to be)!!

ImMaggieMae

Plan on going. You have nothing to feel guilty about. She is in a safe place, she has Hospice that could maybe devote a little extra care for the period you are gone, and she is being taken care of by the MC. We all feel guilty, probably often. We feel guilty when we lose patience with dementia behaviors, not anticipating something we could have done to make them more content, not trying harder. But you have done your best to make things better for her in a difficult situation where you weren’t safe with her. Although the disease has progressed you’ve done things that have made things better. We do the best we can. I don’t think you should miss your son’s wedding. Go and have a wonderful time celebrating their marriage. He is just as important as she is and you need to be there. Try to put everything else out of your mind while you’re there. There is nothing more you can do that you aren’t doing already. You’re doing your best. You do deserve some happiness as well.

justbreathe2

M1 you deserve to go and enjoy this time. My son also had a small destination wedding 2 years ago. It was in January in the Canadian Mountains that they booked two years in advance. It was not an easy trip to plan in January. My DH had just been diagnosed with MCI and I felt guilty to leave him. My son understood, but know he was disappointed. My DH has declined since then. I will always feel guilty missing the wedding.

loveskitties

M1, as others have said please don't let your thoughts mar this joyous time.

It might be helpful if you have a plan in place in case the end comes while you are away at the wedding. Unless bound by religious beliefs, there is no need to cut your trip short to take care of matters if you already have arrangements made and left instructions. It is not disrespectful or uncaring to delay your return…it is fulfilling a dream for your son which your partner would heartly endorse.

M1

Oh there's no question that I will be there to celebrate with them, I was just a bit shocked that my first thought was "gee, i hope she dies before then. ". Yes the worst case scenario would be that she die while i am away, I would absolutely hate that. But arrangements are made. And yes, we will honor her - as well as other absent loved ones- by going on with life. She would indeed want that.

Dio

M1, don't beat yourself up for having this thought. Many of us have wished the same under different circumstances. There's no right or wrong. It's just our raw feelings given what we've been dealt with.

ghphotog

M1, I so understand