Sunday night my partner left me on her final journey - I’d traveled with her as far as I could go. Her actual departure was as peaceful as one could hope for for such a gentle soul as she. And I was blessed to be holding her hand as she left.
I myself have been dealing with weeping home care aides as they dealt this weekend with her upcoming departure. And then with a weeping mother and a weeping son and a weeping sister, and a weeping brother. I held the wake at home. So glad we did this at home, and only for family.
I myself have not had my weeping time yet. It will come, I’m sure. My son drove up yesterday to be with me. I am grateful.
I need to thank all of you. You loved me through this journey for the past two years. I am more grateful than you will ever know.
So sorry for your loss, Lindylou. Now just take the time you need to find rest and peace. If anybody has earned it, you have. You and your partner are in my thoughts and prayers this morning.
I am with you in spirit and will continue to be as time passes and heals, as it surely will. God bless your faithfulness and love. Love and condolences from all your friends here.
Lindylou. So strong for everyone. So glad your son is there. Tell him he needs to give you hundreds of hugs from all of us. And when the tears come just hold you close. I am so sorry for your loss. And more grateful than you will ever know that you joined us here and shared your journey with us.
Lindylou, please accept my sincere condolences. I haven't been on here in ages and wasn't sure I would be again, but just wanted you to know that your story has touched me and your love, care and devotion to your partner were inspirational. You were so fortunate to have had each other. She has found rest, peace and wholeness now and I wish the very same for you.
It was so evident that music played an important part in your lives and a few months ago you posted a reference to the Pat Humphries song 'Swimming to the other side' I want to thank you for that - I listen to it at least a couple of times a week on Youtube - beautiful melody and lyrics that speak to me. Blessings to you going forward.
Lindylou, I am not posting much right now, but check daily to see how things have progressed. When I saw your post, I kind of sucked in a breath...I don't even know what to say. I admire the way you have dealt with this terrible disease that has changed your life forever. You have been an inspiration, the kind of caregiver that I don't think I could ever be. I'm so sorry you have gone through this but so happy that your partner is flying free ( "I'll Fly Away"....a bluegrass gospel).
My condolences lindylou you have been an inspiration to me and to many of us. I can only imagine your feelings right now sadness but relief that your partners journey is finally over and she is at peace.
I ditto what Mim said: you have been the type of caregiver I don't think I ever will be. She is flying high now. It is time to take care of yourself now. She would want you to get your health back and enjoy the rest of your life.
Lindylou, My heart just dropped when I saw the subject line. I'm so very sorry for your loss. Like others have said, you truly have been an inspiration to us all, probably in many different ways as we each go through (or have gone through) our journey. I wish you time to go through what you need to go through, strength to endure it and peace and comfort as you remember all of the beautiful memories you have with her. Hugs...
Lindylou, my heart has ached for you, as you've posted about the AD journey you and your partner were on these past years. You were her angel and her protector. What a wonderful, brave, and loving partner you've been. We've all learned a little from you. I only hope that as my husband's journey comes to an end, I will have the strength and and fortitude that you have shown.
If you don't know the song, "I'll Fly Away" that Mim mentioned, Ronny Milsap does a beautiful rendition of it. You might enjoy it.
I am so very sorry that you have lost your beloved partner.You gave her all that she needed, right to the very end and her peaceful passing endorsed that. And she is not really"gone" for she will live on in your heart and also in ours here. We will never forget her. We will also continue to love you Lindylou, your journey is not over yet.
LindyLou, I am so very sorry for your loss, the love, compassion and determination to do the very best you could for your partner has been inspiring to all of us sharing your journey with you...
You and your partner touched all our lives. Thank you for sharing your story with us. So much loss, and yet so much goodness within it. As the recent memory fades, may you find peace and happiness in remembering the early days and what you and your partner were like before this illness took over. May that time not be too far away. Best Wishes, Lindylou. Carol
Lindylou ,,,,,,, I just want to thank you for your contributions here and wish you the best in your well deserved recovery. You have added so much wisdom for all of us to think about.
Guess what! We are going to have a real live New Orleans Jazz Band as part of my partner's Remembrance Service. This is the main thing she really wanted. She also did not want anyone to cry at her funeral, but I don't think she is going to get that wish. Oh well. The service is going to be on the 23rd which gives us all time for the preparations. My son is up for a few more days and then he and his wife will be coming back for the service.
I am surrounded by love and support from so many directions, this site included. No tears yet. Be that as it may. I am smiling at the good memories - and even some of the memories from this journey into dementia are good memories. Thanking all of you for your support.
I was so sorry to read of your great loss. I have followed your journey and know how hard you have fought to make sure each day was a quality one for her. I am sure she appreciated all of your deep love and care. Yes, all the memories are what will help sustain you.
Painfully, I am new, my time will come, so please stay with us. Turn emptiness into action by being there for those who need guidance. May the Lord bless you and keep you in His arms.
I love the idea of the New Orleans Jazz Band! How she would love it!! Like you I've not had a tear! I am just so happy he's not in the grips of Alzheimer's !! Just remembering good times! I'm thinking of you during this time, glad your journey is on this final stretch!
Each day I am moving down the list of things that need to be done before the Saturday Remembrance Service. Today I got the car its annual inspection - overdue, but fortunately I got no ticket. I also bought a sweater to wear to the service, NOT BLACK. It is maroon and glittery with sequins. Glitter always made my partner smile. Yesterday I went to church and was fortified by twenty or more hugs, and arranged to have set up for the showing of a slide show I made of my partner's life, a show I made for her, now will be shared with others. Tomorrow I am baking cookies for the Celebration of Life collation - thankfully the members of my church are putting this on for us, including the set-up.
But after I do something, I have to sleep. And then sleep some more. And then sleep some more after that. Maybe there will be no tears. I am feeling peaceful. And I'm smiling at shared memories.
You need the sleep to start to catch up from the exhaustion, lindylou. It will take a while, but just take the time you need. I'll be thinking of you and your partner on Saturday. (And throughout the week, of course.) Many hugs.
Spent Friday and Saturday in hospital following an episode of what is called "Transient Global Amnesia". I am recovered now, and am headed shortly to our virtual cottage on the lake.
Suffice it to say that people in a dysfunctional family can reach out intentionally or unintentionally to cause pain and hurt, and at a certain point on Friday I shut down, it was all just too much. The day before the ceremony I was being informed that money needed for musicians and the pastor would not be forthcoming. In spite of the agreement of two years when all life insurance policies were signed over to the son. I was also informed of an after gathering of my partner's family to which I was not invited.
For the son, I keep telling myself my partner was/is his mother. And he is missing the woman who took care of him, and would rescue him from difficulties (particularly financial ones) and pain. For the brother, I keep telling myself that it is very possible he is in the very beginning stage of dementia, and being asked to be the one to bring order to the family was more than he could handle. This all occurred the day before the service. My son, on his way up from D.C., very wisely postponed Saturday's service. At that point in time people were telling me that my partner was dead, and that I had been with her holding her hand through the ordeal. Each time I heard it, with shattering heartbreak, as if it were the first time.
My family and friends surrounded me with loving kindness, but were having a very hard time dealing with the fact that my beloved's family continued to spread anger and mayhem even after my cognitive shutdown. Members of the family were insisting that the service go on either with or without me, but refused our minister's offer to hold a service just for them at the scheduled time because it would not include the music or the refreshments after.
Oh, my friends, I knew in advance, from what I have learned from you, that grieving would be hard. But I am striving for my partner's sake not to let permanent anger take hold. I am ever so grateful that somehow my love escaped the disfunction and embraced peace and love. I know I was blessed from having known and loved her.
The service and Celebration of Life Collation will be at an as yet undetermined time. Leaving some time for healing - theirs and mine.
This is unbelievable. You should have been comforted and cosseted by these people but instead you've been robbed of the rituals that are so important after death. Not just the formal service but also the the acknowledgement of others that a good and valuable person has left this world and that you, her spouse, have suffered a grievous loss. Thank goodness for your own family. I have a lot more to say but now is not the time, so relax at the lake and enjoy the simple beauty there. More later . . .
In the last year of Dianne's life, her whole family came from far and wide to get together in her honor. They had a large family dinner out at a fancy restaurant. They didn't invite me even though it was about Dianne. We endured worse than that. I know these slights that for a long time seem unbelievably cruel and with some time and a bit of luck become revealed for what they are - pathetic behavior.
They're wrong to do these things whether drowning in life insurance and refusing the expense agreed to or forgetting about the partner who suddenly isn't family anymore these are all cruel and unnecessary lashes on open wounds. You have family. You have strong support. Your life has been shattered. Stay on what matters. The rest will wait for a while. You have a good son and you danced at his wedding. You have real love which has just passed away. Stay focused on what matters for a while and stand on the very real foundations all around you. Don't shut down. Reduce the range of concern for some time which is that you get through one of the hardest times in anyone's life.
Wolf, thank you so much for your sharing. What has happened is beyond my comprehension. But it has happened to me. And it has happened to you. I've not been in touch with any of "them" yet, except for a caring fellow "outlaw" who reached out and with whom I will have lunch in a week or so.
I feel like I need armor, but do not want to be weighted down. Came up with a saying you all may remember from childhood: "I'm rubber. You are glue. Ill will bounces off me and sticks back on you." It makes me laugh. I don't have to say it aloud. But I am fragile at this point. I do need to protect myself. No more "transient global amnesia" to save me from severe emotional stress and psychic pain. They do not have permission to hurt me. Ever. I took care of their mother, sister and daughter with love and grace. I did the very best I knew how, and my partner, my love, knew that.
Played back my tape. Have I ever done anything to anyone in this family which was less than loving and caring? Answer is no.I embraced them as I embrace my own family. And this is true. I made it possible for my partner to participate in their family events and for them to participate in ours. No regrets. Was I perfect? No. But only problem I see is I have never been "them". So I don't count as anything but a caregiver to them.
But all sorts of caregivers were on my partner's team, making it possible for her to stay at and enjoy her home. And they are rock stars to me. All of them.
I will be giving the family three dates to choose from for a rescheduled remembrance service and celebration of life. Close to or actually in November. At this point in time later is probably better than sooner.
So sorry that you feel bad about them leaving you out of the after gathering. I would just like to mention that sometimes when there is stress related events in our family, we need to discus them without the most concerned members being present. I can remember my own family doing this several times when they needed to decide what they should do about me and my Dear Helen. ....... I completely understand why they didn't want me there.
I think that you are going through so much stress right now that it's very difficcult for you to forgive them.
If what we went through could show on us the way a prize fighter shows fifteen rounds with a lesser brute than we face for years, we'd look like Rocky on a really bad day.
Nobody has mentioned shock. Shock comes in many flavors and guises but luckily has a short half life. The Global Transient Amnesia is a real thing but the technical meaning is that life has pulled the rug out from under you and you've landed on your keester. This is shocking on a deep level and that shockwave bounces around in the bay for a while.
I agree with George her family didn't mean to hurt me. It was too much for them just like it was for most of the people around us. They were already miles outside their comfort zone. Remember comfort zones? I do. Feeling sorry for the guy at the funeral but being impatient with the idiots in front of me before I'm out of the parking lot.
I don't think you're going to get anywhere applying your rationale to primal tribal behavior. Reviewing what you did isn't going to play to the primitives hunched down in the cave in fear that one of them died, strangely, and early. Why, it might be here in the room right now unseen! Best not to think too much.
What I know makes me weep. I can almost feel the thousands and thousands of families that were driven out of the village because someone got cancer or a ruptured appendix and so they must be tainted by evil. Having your other half die and being driven out have been a double feature on the bill of humanity for thousands of years.
I'm impressed by people who can do differential calculus on a terrifying roller coaster ride. That's equal parts impressive, useless, and unnecessary. These land animals have no memory of the things they are avoiding. As I always say, no one ever means to do anything; but things happen.
That's the right thing to do. While you watch some slither away, remember the heroes that contributed to bring about her ability to be in the comfort of home. It sounds to me like she even knew parts of that at times just recently. That is a connection I didn't have and deeply envy. Look in a mirror too when you look for the ringleader. Whatever it's done to your guts or to your memory at the moment, you may have given more at greater personal cost for longer than any other thing you did in your life while she went through the hardest thing too, to fade away in this brutal way.
Plenty of bathos, and pathos, and ethos to go around but it's love pure and simple. And there isn't a spec of difference between your love and my love that I can see and I look. You didn't teach me that; but you showed me the truth of that.
This is just nuts. Lindylou, I don't know what planet these folks live on, but in our society, a deceased person's spouse is not simply a "caregiver." She is the chief mourner and the one who has the say about funeral arrangements. The birth family of the deceased (who did not even live with the deceased person) is not supposed to hijack the ceremony. And excluding the bereaved spouse from a post-funeral gathering is just not an option. Whether these people meant to hurt you is not really important - it is their barbaric behavior that matters. Whatever happened to respect and compassion?
I am so sorry for what you have had to go thru. There is no excuse for what has happened. I agree with Myrtle, I can't imagine the hurt you are going thru and then to have her family treat you like an intruder is awful.
Well the son has to do what he is doing and my partner's family is going to support him. He is in a lot of pain right now. They are the only ones who can help him.I cannot wish him ill. He is my partner's son.There will be two separate services , one in a different place with no participation or input wanted from me. One on November 18 at our church which has supported us with love and compassion through this journey, above and beyond. I will lean on their love for a while, and sooner than later I will be able to reach out to help others there.
The strange thing is, is that I am alright with all this now. I will never understand it, but I am really alright. These years and these past months and this past week have taken a toll on me, God knows. But stress is leaving my body. Going to the lake cottage now and hug some folks who are already there.
I'm waiting for you at the cottage with hot coffee and cinnamon rolls. I need a hug too. Had a similar cituation about 5 years ago. The hurt has never gone away. The strange thing is that I still miss the friendship that we had---or thought we had. You can be glad that your partner never had to know of the hurt you are going thru. Meet you in the kitchen.
Dear Wolf, I have to confess that sometimes I read your posts and then reread them, and then try a third go at it. And sometimes I don't get it at all. Sometimes. However, your most recent post on this page, I get it. I think all of it. One thing I want to share is that my recent mental gymnastics on the roller coaster were not so much to prove I could do it, as to prevent getting trapped in anger. Anger has not served me well in the past (a story from long ago and not related to this web page). After years of carrying it, first on my shoulders and then in a wheelbarrow, I finally found a way to dump it. Big relief. Do not, want to carry a burden of anger into my partner's Remembrance Service. So here were my gymnastics - first I balanced on the front of the roller coaster car and said "If I just explain what happened to me with no blame assigned and tell of the scariness of it all and my love for them, then this family will understand". They as you predicted did not get it at all - way outside of comfort zone! Then I crawled under the roller coaster car - its amazing what you can see from there - and suddenly I realized that they would never understand. I would have to be the one who understood. So, I figured out that my partner's son is hurting so tremendously badly that he is throwing muck around and ranting at all injustice. And his family, not me, will have to be the ones who help him, if they can.Their loyalty lies there. Okay, I suddenly see it. My pain means nothing to them (does not mean it should mean nothing), but they have a crisis to deal with and it is not me. So I struggle, and it was a struggle, I get back into the roller coaster car and see the light of day - Of course, two services makes absolute sense, mine and the one son is planning without me, each to meet different needs. So I stand up, shout from the car and say, "I'm okay and I'm okay with two services, and come or go to both of them if you wish. I will honor my partner, I will honor our caregiver rock stars, I will thank my family, friends and church, andI will dance to "When the Saints to Marching In" on November 18. And if my partner can smile I think she is doing so.
And this is a P.S. from another post: "I'm rubber you are glue" is not, I repeat, is not, a good armor. Just saying. Trust me.
Lindylou, I'm sorry I'm hard to understand. I work hard to communicate but the truth is I've heard this all my life. It's me not you.
Anger is my major opponent. What I called Al Zheimer back then wasn't in the same league because I feel relative peace from the events and the cause themselves. It's my reactions to those massively powerful life events that I wrestle with the most.
Anger has never served me well either. I consider it one of the dry rots of the soul because anger with purpose and definition is specific but anger as an outlook worms into other places. Then, because I've been hurt, I'm hurting myself.
I want to be extremely clear that back then I didn't have any of this nuance. I was shell shocked, scared, beat up, and not much else.
Consider that your feelings do mean something to them but that is lost at sea in the real need to stop this pain (of Alzheimer's) being in their lives which they can substantially do by being away from you. As we all know spouse is different from mother or father or sister or brother. That's why this site exists. That's true here too.
I would bet the idea that they're hurting you or behaving badly doesn't have a half-life of three seconds. They're dealing with what happened to their relative. Past tense. You are happening now and so have become the remaining threat.
To protect themselves they move you into the past with her and for them this terrible ordeal and real sorrow isn't with them anymore.
This is exactly why I told that story of weeping over all the families that were exiled from the village because one of them died from a ruptured appendix - so they must be evil. This story is as old as history itself.
Your job is to review what that whole relationship was like and put all this into a context. I'll give you one. I was extremely hurt by my in-laws closing me out. It wasn't until I re-learned that I don't really want to be around them anyway and that I realized what I want and need isn't over there, that it became a non topic. I don't regret that it really hurt because it did. And I don't regret that I don't actually want to spend time with them because I don't.
A completely different resolution applied to our x-lifelong friends who all ran screaming as fast as they could. They're behaviour was so unforgivably swift and self serving, it was unforgivable and has not been. They phoned me once to let me know one of them had died. Unfortunate. Now there is only baldy, bimbo, and blubber left as I call them now. I await further news.
Anger has never served me well, it's true. But sometimes I allow it. Usually it's best to forgive because it frees me as much as anyone. Sometimes I follow the teachings of Machiavelli - keep your enemies close. Baldy, Bimbo, and Blubber aren't my enemies. They're completely useless. Anger is my enemy. It's dry rot in the soul.
I did my best. So did my partner. So do we all on this website.
A year ago my partner and I told each other we knew that each of us was doing the best we could. Through the year we acknowledged it many times to each other, and when she couldn’t acknowledge it at the end, I did it for her. I’m doing the best I can darling, and I know you are too. The last time she told me was a month ago at a time when she found words nearly impossible. She had her mouth full of liquid meds and would not/could not swallow. I asked if she hated me. She took her arm and caressed my head because she heard my pain. The memory, a treasure to keep even though each time I think it, it makes me weep.
I could not/cannot go to my beloved’s remembrance service with anger filling me up, and regret and irritation. We’d come so far in this journey with love not failing us. That was the roller coaster I was on. And it would not stop on its own. Hence the mental gymnastics. I had to find the differential equation (whatever that is) that worked. I did. So I told the family I was okay with two services honoring my wife and their family member, two services meeting different needs. I left the door open to them attending the rescheduled service at the church. I left the door open but I do not expect to see them again. I will miss the grand babies, they are such sweet little things. But at this point, truth to tell, I will not miss the rest. I do not need them in my life, and could/would never trust them again anyway. Forgive them? The hardest part is that not one of them has called to see how I am doing. But, yes, I think I probably have. (Thank you, George - I wasn’t emotionally there yet when you wrote it.) At least the anger is gone. And I hope her family can help my partner’s son. He was the apple of her eye.
I too will weep for the banished families, Wolf. But I was fortunate to be able to pick myself up with the grace and love of so many people. And life goes on.
Thank you all. I am starting a two week trip today, down to DC visit my son and DIL a bit, and then down to Tennessee for a Storytelling Festival. Returning I hope to see an old college friend and her family. Will get back in touch when I return. Love and hugs to you all - and especially all who are suffering so much right now. Know that my love, hugs, thoughts and prayers will still be going out to you, even on this trip.