I need a pep talk

Midwest Gal

I am more of a reader than a poster, but I feel like I'm going through the stages of bereavement grief (angry stage) even tho my DH is still alive. I love to share Xmas cards but this year if I would have outlined my year it would have said; Happy Holidays, I spent the first part of the year doing the usual cleaning urine off the carpet along with all the many other duties (only us care givers would know), wondering how I could keep ahead of the game/planning for the long haul with DH at home, spring came and DH decided to run away often in his stocking feet, chasing him down the gravel road in the car trying to explain to my sweet 4 year old grandson in the back seat what Papa was doing, then came the delusions of who in heck I was and what was I doing in his house, his (and my) safety along my mental health (high blood pressure for the first time in my life) became a very big issue to the point that his physician sent him off by ambulance to the hospital for a 9 day admission with lots of injections of Haldol and Ativan/it was either him or me. For the past 7 months DH now lives in a lovely Memory Home 25 miles away and getting into the late stages of stage 6. I travel there daily just because I personally feel the need to. He is my best friend and soul mate. I cry more now that I have time and energy to even being in touch with my own emotions. I am very sad but there is no going back. The decisions that I made were a must/no regret.

However, lately I have just been angry that our family and what I thought were close friends mostly just stick their head in the sand. Do other people hear "I don't want to see him, I just want to remember him how he was." Duh...so do I, but it isn't what we have the pleasure of doing. I don't even want these people to show up when he does die when they have had the past 10 years to come spend time with him and see him alive, knowing his life would be short. This can sure be a long, lonely goodbye. I'm a trained social worker so I know what I need to do, but sometimes venting just helps. I am blessed with a hobby farm with lots of "animal therapy" and walks in the woods. I plan to check out the Y for some winter swims. But after a while just being home alone starts to be the comfortable norm. While DH is still alive I have no interest in travel or big social events. It's even hard when people wish you a Happy New Year when the only good thing would be if DH would gently pass on and leave all of his confusion and agitation behind. Then I wonder if I start the bereavement grief stages all over again?

M1

i was having similar thoughts last night. Not anger -Ive pretty much let that go-but wondering whether i will feel bereaved all over again in stage 8. I may be surprised, but somehow i don't think i will revisit all the stages, i think i will mostly feel relief. I don't feel like I can move on until she dies, but i feel like I will be more than ready to do so. And yes, i hear the "don't want to see her like this" all the time.

CindyBum

I feel like I cycle through the grief, sometimes landing in a place of marginal peace as my DW settles into a stage for a bit, then right back to it as a new cognitive loss for her rocks me and sends me back into the cycle.

Terrible pep talk.

Ed1937

@Midwest Gal " I don't even want these people to show up when he does die when they have had the past 10 years to come spend time with him and see him alive, knowing his life would be short." One option for you would be to have a private funeral for family only. This is what we did for my wife, and that's what I want when it's my turn.

Joydean

Midwest Gal I agree about the funeral! We are doing cremation, no big fancy funeral. But a celebration of life and ONLY the family and friends that did come to see dh. If they can’t see the bad they don’t come to be seen by others. It’s not a show and tell event! Sorry if that sounds like I’m bitter, it’s just all his friends just disappeared around stage 5. The only way for new year will be if God will take him home in his sleep and no pain! Prayers for strength for you!

Denise1847

Hi Midwest Gal,

You have been through so much. I totally get the anger at friends who make excuses. I have had people say, "Is it ok if we drop by sometime to see him." They never do. People just don't understand the disease and the loneliness we go through. It feels like they have forgotten us and it really hurts, which then turns into anger. For whatever it is worth, I think most of my anger is about the circumstances we are in, the unfairness of it all and the suffering. I have figured out that I have times when I project my anger onto others but it is really the injustice of it all. I have come to a place where I have accepted that people come into our lives for a season (usually for some mutual benefit and interest). We find out who are our real friends when a tragedy occurs. Those are the ones you want to comfort you when the time comes. Others will just see their attendance at a funeral as an obligation.

Have you considered grief counseling? All of us are grieving so many things and it cycles through the entire journey. I did go to counseling for awhile and the counselor said that I was grieving and that was 2 years ago. I still struggle with this situation. I also pray for God to take him in his sleep.

Hang in there Midwest Gal. You have friends here. Keep posting. We are listening.

Jeff86

Thanks for your post Midwest Gal. I remember well the stage in our journey where I resented family and friends who withdrew, who were not there for my DW. I did learn to let go of it. Partly because this journey is so hard that I didn’t want to expend psychic energy on negatives. And partly because I came to understand, or perhaps accept, that some people just don’t have the make up, the resources, the capacity to deal with the challenges that are entailed in continuing to love someone with AD, and to transition their love to the changing capacities of a PWD.

I/we were ‘lucky’.’ My DW died in her sleep, at home.

Is it a relief? To some degree. She is not suffering, and no power on earth would make me bring her back if I could.

Our experiences in grief likely are as unique as our experiences as caregivers and as our LOs’ journeys. Overall, for me, Stage 8—a mere five weeks in, granted—is no great relief. No relief at all, really, and keenly painful. And as much as I grieved while my DW was alive, and I sure did, this is hard. I wish I could tell you otherwise. I’ve missed my DW for so long….but the finality is tough. Not being able to look in my DW’s eyes or hold her hand is tough. And apart from the almost palpable pain of missing her, of missing what we had, I don’t know yet how I’ll rebuild a life not centered around caregiving.

of course, YMMV

M1

Jeff your experience gives me pause. Perhaps I underestimate how it will feel. I guess the only things I feel certain about are how much i love her and how profoundly changed i will be by this life experience.

Midwest Gal

Thank you everyone for your input. You all have so much insight to this whole crazy ride. Yes I do plan to keep things simple when the time comes, and he leaves me. He had actually requested this prior to the progression of his illness. Yes, you are probably right that I am angrier at the whole illness than the people. I need to be less petty and just appreciate the time that I have with him that others have chosen not to share. And Jeff, thank you for your words. I have a feeling that no matter how tough things are now that that final time when he really does pass on that I will be lost. I had imagined all the travel and rebuilding of my life then, but I know for a fact that it won't be that easy. I still have the luxury of holding his hand even as he sleeps. When I'm alone and feel sad I often play the song "You're still you" by Josh Groban. Check it out if you are not familiar with it.