I had a difficult time relating to my brother during the days preceding and following my mother's death.  When I called to tell him she was gravely ill and I was putting her on hospice, he started going through various scenarios about getting back here to see her and/or getting to Alabama for the funeral.  Seems the logistics were just so troublesome.  He said he "had already mourned his mother and had no need to see her again before she died." 

I'm sorry if others feel that way.  I totally understand the losses we face and get through along our journey, but I felt that my mother still existed in her body, in the eyes that still knew me and smiled at me through her suffering.  I told my brother that if he didn't feel the same way then I didn't need or want him here.  He elected not to come.  He flew directly to Alabama from Germany for the funeral.

There are a lot of extended family that weren't very sympathetic to him.  I really don't know how to relate to him during this time of grief.  I feel it so strongly, I miss her kisses and her smile, I miss the mother she tried to be until the very end, despite her disease.  Yes, I haven't had the mother I knew for most of my life for many years now, but I just can't relate to his feelings.

My gut tells me he must feel some pain of loss but my heart is hurt by his distance these last two years.

Does anyone else have similar situations with your siblings or other family members?  How do you respond?

DJ-I'm so sorry. Do you think that your brother and mine might be related? 

Our mom is stage seven, 87 years old, and may linger for many, many more years. 

     He hasn't visited her in four years. Time and distance are not an issue...he is retired, and it's a 2 hour drive from his house to her care home. A few years ago he told me that for him, she is already gone, and basically he "said his goodbyes year ago". I was so shocked, I just didn't know what to say, so I said nothing. But I stewed about it all the time, and was really angry.

    Since then, we have had a few heart-to-heart talks, and he has told me he doesn't visit her because he just can't take it emotionally. I finally realized my anger (and sorrow) at him was going to only hurt me. Mom doesn't know who he is, and hasn't for five years. 

     In his favor, he does call mom once a week, and talks to her, even though she's unable to talk to him, now. 

 I know my brother feels a sense of loss, and I think your brother does, too. Some people just are unable to either experience or express those feelings the way we do. We've had a deep emotional investment in our parents' care, unlike our brothers.

       I simply can't imagine NOT spending time with her, holding her hand, talking to her, stroking her arm, even though there is no real interaction. My deepest fear is that she would feel she has been abandoned. But, that is me, that's the way I am. He is who he is, and in the end, may or may not regret spending time with her.

Oh, dj -- Everyone's situation is different, but maybe I can relate a bit...  I asked my sister if she wanted to come to see our mother when it was obvious that she was dying.  She had seen our parents about a month before and had a nice visit with them. It would be a plane trip (not international, however), and she would then be traveling for the funeral as well. She decided not to come.  

I think in her mind, she wanted to remember them from her last, pleasant visit. Maybe she was scared of seeing our mom actually dying.  Also, it would have been difficult to make the arrangements to travel and then come again for a funeral. I also think that she knew that I had everything "under control" -- hospice on board, mom was comfortable, etc. It was so tough for me, though, to sit with mom for three days by myself.  I will never forget those days.  In some ways, I feel lucky to have had those days. We all have to make our own decisions.

When she came a few days before the funeral, I sat down with her and told her every detail about those last days with mom.  I don't know if I did that so that she could share in it with me or if I needed someone to hear all the details that I couldn't tell anyone else.  Even now, it makes me cry to think of it.

I have had a much harder time dealing with the death of both our mom and dad than my sister has.  I asked her about that because it makes me think that maybe I'm not   holding up as well as I should.  She was sympathetic to me.  She said that since I was the one that took care of them for the last five years and saw them almost every day, that of course it is affecting me more than her.  It really hasn't changed my sister's daily life.  It has left a huge hole in my life, a drastic change.  But I don't hold that against her.  I know she loved them.  It is what it is.

DJ, my brother is similar, I had a conversation with him about a business matter and when I said the word "mom" I lost it a little bit.  He became very irritated and when I said it was really hard without her, he just said "yeah I guess" and that was that.

I'm not even going to give him any benefit of the doubt about feeling grief.  His life has moved on, the only thing that's different is now he doesn't have to visit the NH for a 1/2 hour on Sundays.

I remember him saying, when mom couldn't talk anymore and seemed not to pay attention to him, that it "wasn't really rewarding" to visit her.

Sad.  All you can do is have pity.

My Mom passed away early this evening.  My Sister talked to our Brother, who lives in Alaska, and he wanted to know when he should come down.  I told her to tell him we will let him know.  Mom is going to be cremated.  We will probably take her ashes to upper Michgan (that's where are from) and bury her with her parents.  Figure then he can come for the memorial service there.  Plus I feel like saying to him over the past few years you never called your Mother.  When you did come to lower 48 you never bothered to come visit.  It's to late now to come see Mom.

Hurts when siblings don't call because she gets to confused when talking to her on the phone.  At least call to say I love you Mom.

Everyone grieves in their own way. Just because siblings don't seem like they are grieving, you really just don't know. We all have our own path. Yes it would be nice if siblings could all relate to one another about their grief, but it doesn't always happen. I have no idea how my siblings feel, nor they me.

I don't think it is sad that anyone reacts how they do. I don't think those that weren't in the trenches so to speak, missed out on what others went through and saw. You have good memories of them, and some not so good memories.

I personally do not, never did, want the memories my siblings have of my mother. They have some horrible memories. Mom screaming in the middle of the night as my bro put it "because she was CRAZY", mom attacking dad, sis "dragging" mom,etc. imho my mom should have been in a facility, not at home. It was the selfishness of my father that kept her home. She was isolated. She had only sis and dad as companions, and both of them bossed mom around, pushed mom, they never let mom just "be", mom was always trying to live up to their standards. My sis enabled my dad in his selfishness. I don't feel they did what was best for mom, they did what was wanted by dad.

My memories are of mom. I did all I could from a distance, across the country, I called, I sent gifts, flowers, cards, letters. I suffered from a distance the pain I knew my mother was going through. My heart broke for her.

Someone mentioned pictures on another thread. I looked at one from about a year and a half ago. Professionally done. It was moms smile, but her eyes showed she was just doing as she thought was expected of her, there was no joy in those eyes.There wasn't that "twinkle" so many mentioned at her wake/visitation. That twinkle had been gone a long time.

farawaydaughter

Oceanbum, I'm glad your uncle came, that made me tear up.

Faraway, it was clear to me you CARED, though.  You did everything you could from where you were.

Many people on the board have siblings who could live next door to wherever their LO was and be emotionally disconnected.

Thanks so much for all your replies.  I guess it's just how some people deal with their grief and the loss of the person they knew.  This disease is so awful that way.  It's not like a sickness where you can visit your loved one and they still know what's going on even through their pain.  I guess folks just develop a way of coping.

Those of us who care or cared for our loved ones on a constant basis came to know them in a way that others that saw them only occasionally could not.  I came to treasure the soft kisses, the winks, the chuckles at nothing that were a part of her new normal.  And I miss that.  I, too, grieved the loss of the mom that taught me how to cook and sew and garden.  It just troubled me that my brother wouldn't want to say good-bye to those beautiful blue eyes that still shone with love.

I count myself so fortunate that Mama never had to become bed-bound or contract and lose the ability to smile.  This illness took her before she lost so much more.

I'm sorry if I've cause anyone pain by recalling these hurts.  But this is all so new to me.  I value your friendships.  I feel like I've known so many of you for so long.  Now we are in this new arena together, this game we call grief.

Hugs to all of you!!!

Dayn2nite, Thanks for "knowing". My sis and bro do not feel the way you do about me. They think I am a terrible daughter. I was told I picked my (medically ill) dog over my parents.

They hate me.

dj okay. I would expect all of you who have done the hands on caregiving for so long, to feel the grief a lot more. They were your life for so long. You worried, questioned, cared for 24/7. There is a bigger void in your lives. I understand that.

When my mom could no longer speak on the phone, because she didn't know what a phone was any more, I began to lose her then. Or my grief started then.

I was never offered to speak to her in her last few days. Sis did not offer to hold the phone to her ear. The hospice RN told me on a Monday that mom had only a few days. Mom died the very next day. I never had the chance to get back there.I only had a one shot deal with a vet here for care of my dog, and that was only for 7 days. I couldn't go back just any old time.

It was a 14 hr. day for me to get there.

It really is different for everyone.

This is why I question whether to post or not. I was not the hands on caregiver like all of you were. I appreciate everyone letting me post any way. I am grateful for that and for all of you.

faraway,

I wasn't the hands on caregiver for my Mom either. My Dad did most of her care at home as long as he was able. I did go over every day for about 3 months and help with her care when I was unemployed. But then I got a great job offer and I felt like I had to take it. I felt really guilty for a long time about it but with our financial situation I really had no choice. My husband had been layed off from his job about a year before and had taken a job paying about 40% less. I had quit my job at the bank because I had been robbed. So we were really hurting financially. I enjoyed the time I helped take care of Mom and I wouldn't trade it for anything in this world. But when the job offer came I had to take it. Dad did get my cousin's wife, who was a nursing student, to take my place so that made me feel a little better. Mom was able to stay home for another 1 1/2 years after but she eventually went to live in the nursing home. And she was there about a year before she passed away.

I'm so sorry your siblings are treating you that way. They just can't see things through your eyes. In time they may come around. Just give them their own time and space to grieve. As it was said before eveyone grieves in their own way.

Please continue to come here. We are all going through this process and we are here to help each other. I find this board very comforting. The people on it are on the same path as me and they "get" me. They know where I've been and they know what I'm going through. Hugs to you.

dj:

Your posts bring up something that I am currently reading about.  The hospice gave me a pamphlet and it talks about grief and one of the topics is how people grieve differently.

I understand what you are going through.  My sibling and I are not at all alike.  I am grieving but I cannot discuss it with my sibling, can't share feelings of sadness.  Sibling tells me not to feel certain feelings and basically sibling got on with life a long time before my father passed away.  I am now seeing a therapist trying to sort out all of these feelings, emotions, loss of my father and my strained relationship with sibling.

I wish I could type out all that this pamphlet says on this topic.  Here's some snipets from the pamphlet.

"We expect some difference in how people react to grief, but we may be puzzled by the many differences we see among those who grieve.  What accounts for these differences?  How can one person appear utterly devastated by a death, and another appear able to grieve, to regain personal equilibrium and to adjust to life's changes, with relative ease?"   Basically, the differences in grieving depends on the nature of the relationship the person had with the person who passed away, it could be gender related, it could be personality differences.  The pamphlet talks about affective grieving and cognitive grieving.   "Affective grievers focus on their feelings and tend to want to talk about their grief.  Cognitive grievers focus on taking action, solving problems, creating tributes, checking items off a grief to-do list."

"The more invested we were in our loved one, the more time and energy we gave to him or her, the greater may be our sense of loss.  The more of our personal identity we found in our relationship or the more meaning and satisfaction we derived from loving and being loved by this person, the more intense may be our grief."

When my mother was very close to passing, just minutes, I called my sibling and she said it was okay, she already said good-bye.

My sibling apparently has moved on and is being her normal cheerful self after my father's passing.  I see some different scenarios for this based on my history with her.  She was not very accepting of my father's personality, she is not a person who wants to become involved in the care of another, she doesn't like anything unpleasant or unhappy.  This is how she lives and survives her childhood.  I had the same childhood, but went in another direction.  Interesting how people come from the same families, but don't necessarily share the same feelings and see things from different set of eyes.

I, too, have a tendency to want to share this with the one person who shared my life history.  That person is unavailable to me, that person will not do that with me and I am learning that.  It's very lonely sometimes but there are other people, thank goodness, who are willing to listen and I'm appreciating the generous hearts around me to are willing to do this for me.

I'm sorry, I didn't mean to take up so much space, but I just read this on my commute to work.

You've got us, here, dj, we feel much of the same and we know how important it is to have somebody to hear us, to let us cry and say we hurt.  You take care.

Faraway,

Please don't feel that because you weren't a hands-on caregiver you don't belong here.  This forum is for everyone who loves a dementia patient and cares for them in their own way.  That can be through letters, phone calls, visits or any number of different ways.  You still feel the pain of loss that this disease takes from us.

I was actually not a 24/7 caregiver, except for 3 weeks when I first moved my mother to Michigan and she was able to still take care of most of her needs then.  We got her set up in a senior apartment with home health aides managing her medication (the biggest issue we had to deal with at the time).  After living fairly independently for over 2 1/2 years, we had to put her into a dementia care home and then a nursing home 5 months later.  She had been in the NH for 3 1/2 years.  I still took a large role in her caregiving.  I visited often and made sure the staff knew her and her needs well so they could provide the loving care that I could not 24/7.

It's finding my way through this time of sadness when so much of my life revolved around her.  I find myself thinking of things I need to do, like I need to go to the NH tomorrow, not.  Or dreaming of needing to get to her funeral.

The concern of these folks that are making their way through their own grief is helping me.  I look forward to feeling better soon and getting some of the joy back in my life.

KML,

Thank you for taking the time to share those words of wisdom with me.  I need to give my brother a little credit for feeling something, even if it doesn't appear to resemble my grief.

I wonder if you realize that I also joined the forum in October of 2007.  So we have traveled this road together for almost 5 years now.

dj:

I hadn't realized that we both came here around the same time.  Sometimes it feels like a long time ago especially when I see "2007", but it really doesn't feel like five years, the time just went by.

I was always impressed by your explanation of your post name, if things were ok, that was good enough going through this.  I always tried to remember that and have that fit my outlook, too.

My sibling recently said the obligatory, "how are you".  I said all right.  She said, "all right?"  In a tone that implied that wasn't good enough.  I said, "all right is okay."  I thought of you at that moment and I felt a conviction when I said it.  No apologies, just the fact of how I felt.

Under these circumstances, okay is plenty.  Take care. 

There are some days lately that it's tough just to be okay, but I'm still trying.  I think so many people think if they aren't HAPPY that things are not good.  But in times like this, being okay is not bad, considering.

My mother's favorite Bible verse was Hebrews 13:5 "be content with what you have for he has said "Never will I leave you, never will I forsake you.""  She always tried to be content, even when what was happening to her wasn't what she really wanted.  I admired that in her so much.  I guess she's still teaching me....

Sigh....

People do grieve in different ways.  My mother's own brother came to visit her once in three years.  He lives across the country.  He knew that three years ago would be the last time he would see her.  That was when he said his goodbye.  Is that wrong?  For him - no.  Did she know him?  Absolutely.  I hate to say this, but for my mother it was out of sight out of mind.  She didn't know he wasn't there visiting her.  The rest of us, we had to come to terms with it and accept it, not let it eat us up.  My mother had a cousin, who was more like a brother to her.  They were the same age and grew up together.  My mother's brother was 10 years her junior.  This cousin went to visit my mother a few times, but he absolutely could not bring himself to come to her celebration of life party.  At first I was really taken aback by it.  Then I got over it.  People can only handle what they can handle.  We can't force them to see things our way.

FarAway - Oh please.  You were one of the most caring far away children ever on here.  You went through this just as we have and you mourn the same way (or similar, your own way as I do my own way, etc... - the point of the above paragraph).

I have learned that we can only expect of ourselves, not others.  If others don't do as we do, it is not wrong - it's just not our way.  Getting upset about it only affects us, not anyone else.

farawaydaughter:

Please don't question yourself about posting, of course, you belong like all of us, everyone of us belongs.  I didn't live with my dad either.  We all have different and similar stories, because life presents itself that way.  We all have been touched by this disease and we are trying to cope with loss of our loved ones little by little as they were living with this disease and then coping with their passing away. 

So don't you go anywhere, you're important to us    I relate to much of what you post.  We all give each other good insights and it's just really good to be able to talk to people who get it.  I find that's hard to do anywhere else other than with people who have witnessed this disease. 

I froze when I read your post. . . .because your brother's words were pretty much the EXACT words of my brother when I called him to tell him our mother was dying, please come to the hospital.

He didn't.

I am not forgiving of his choice that day.  But I can tell you that he had NOT done his mourning.  This only became evident over the next 3 years as we grappled with my father's care, the death of our aunt together.

I don't know if it was a reflection of machismo, or just the very different and at times incompatible person he can be.  While he never verbally admitted it, I do know that there was very great regret.

I think the hardest part of this situation is that is damaged the relationship he had with me and my other brother - who did choose to come.  The focus was all on whether Mom would know, or Mom would benefit, but heck, you left ME ALL ALONE TO DEAL WITH THIS!!!!   Clueless.

My Dad is not doing great these days.  I've been lurking as a reader on some of these boards as his illness brings up memories of my mother's death in 2008.  I don't feel quite "vetted" enough to join most conversations of those with a new loss, but wanted to chime in here because of the parallels.

Your log in name also always makes me smile, because my mother's nickname at times was "DJ".  So seeing your name, djokay, always makes me feel like there is a message, a positive one there. 

King Boo--I feel the same way toward my brother who left me alone to deal with everything.  I'm sure he has his regrets and I'm glad if he does (hee hee).  The one peace I have had throughout my experience with mom is that at all times I did the very best I could with what I had.

And I'm glad about that.  In the beginning after mom was placed, I would call him and remind him that she could use a visit and he would or would not according to how he felt.

I soon realized it wasn't my job to make sure he visited.  I started concentrating on just enjoying my time with her and if he didn't go that would be his loss.

If I honestly felt he did the best HE could I wouldn't be angry with him, but living 5 miles from the NH he could have done much, much better.  It was like "out of sight out of mind" with him.

Yes, days2nite,yes.  I always hope my brothers will visit, but it is not my job to ensure it it happens.

I've too much to do with Dad.

With his hospitalization this week, I sent out an e-mail stating that I will provide factual updates and would each person please make their own decision about whether to visit or not?  Stop calling me and giving me the roundabout reasons about why you can''t - and stop asking me if you think he is at deaths door.

Annoying.

All three of my brothers did the exact same thing.  They didn't want to see Mom because they didn't want to remember her "that way."  And they rarely called because Mom couldn't talk like she used to or carry on a conversation.  I used to tell them, "Just talk to her!  Tell her what's going on in your life.  She may not be able to respond, but she can listen and she loves the sound of your voice."  But, sadly, they couldn't.

Yes, I've forgiven them for their weakness but even while forgiving, even after six years, deep down inside I have a little resentment for leaving it all up to me and a little anger that they couldn't overcome their weakness for Mom's benefit.  Did they think that I wanted to remember her the way she was?  Did they think that I enjoyed carrying on a one-sided conversation?  But I'd give almost anything to be able to have her back even the way she was at the end. 

I miss her so much.

Dear AllForLove,

I understand what you're saying about wanting her back.  I'd give anything to be able to look into those blue eyes that shone with love right till the end.  But I realize so well that she would not have wanted to go on living the way she was the last few months.  So I try to put aside my selfish wants and tell myself that she is in a better place, and whole again.  It is what gets me through.

Like you, I've forgiven my brother.  I still don't understand, but it isn't required of me to understand, only accept that it was his decision to make, for him.  I only have to live with the decisions I made.

This is such a good thread. Misery certainly does love company.

Its good to see that others, like myself have siblings who don't "get it". Who have been left alone to care for there loved one's.

I give a lot of credit to those of you who forgive and forget. I can not do either.