See you at the funeral… Cutting off relationships.
”See you at the funeral,” as of late is what I am constantly wanting to say to family and friends. Life is exhausting, both physically and mentally. I am aware of what I have in me and I choose to save this for my DH. As things change in the disease progression, it is disheartening and disappointing to observe the level of insensitivity and obliviousness from his siblings and other family members.
It makes me want to cut all ties off and protect my/our peace. I know isolation comes with the territory, and I am perfectly ok with it. But it breaks my heart when I think about this because my husband was always close with his siblings and always a social butterfly.
I am curious as to what your experiences have been in such situations. How did you determine and express boundaries?
Comments
-
Sometimes I feel like saying, don't bother coming to the funeral. If friends and family can't find it within themselves to be present now, why should they wait until the funeral to show up? Honestly, I think of times in the past when I had thought to go see someone struggling or give them a call and I didn't act on it. I'm sorry for those times. I used to accept the concept of "I don't want to remember him or her that way". Yeah, well, we don't get that option do we as caregivers? I see that as a cop out. Before my DW was diagnosed, I had already come to recognize the benefit of visiting someone that was chronically ill or already in hospice care. I actually think its a part of the grieving process to see and fully understand how sick someone is. It helps us accept their eventual passing.
Please know that I am praying for you today. May God give you strength to continue on. And may he bless you deeply!! And may he give peace to your DH today.
8 -
I understand. I’m soooo tired too. And I find myself agitated all the time. Especially at the people that say and not do. You have my hugs!
5 -
I feel the same way. They don’t realize that just a phone call helps. I have told my DWs brothers when the time comes they can pay their respects but it will be when I’m not there. Then they can go back home.
3 -
Add me to the “I feel the same way” group. My husband has a daughter and a sister who don’t visit or call. The daughter hasn’t initiated any contact in over 25 years. She won’t even be welcome at the funeral even if she tries to attend. Luckily his other sister and his son are more than I could ever hope for. In fact, meeting his son in a couple of minutes, he’s taking his father for a long weekend visit.
5 -
You have ripped the scab from my wound. This has hit me hard in the last couple of days.
When my DW finally gets to go "Home" I plan on having a celebration of her for everyone that has been here for her in the last 6 Years. As of now there are two counting me. I will not deal with a bunch of people that are going to show up for 1/2 an hour to act sad on their way to going out to eat to make them self's feel better. That includes family and friends. As my Dear ole Mother said, " if you couldn't come and see me when I was alive, don't come and see me when I am dead.". God Bless you Mama.
DW and I were social pretty much, babysitting almost every weekend for grand kids and nephews, DW had many "friends" from high school. Now DW doesn't get calls, visits, or even check ins through me to see how she is doing from anyone. So, everyone has already set their own boundaries. I was never asking for help or support, just a little compassion for my DW, their friend, Mother, family member. I have no obligation to put on a funeral or expectations for anyone.
I have not cut off any contact or communications. I also do not have any obligation to contact or communicate with any Johnny come lately. Please protect your peace. Do what will keep your sanity. You are the one carrying the load. Don't cater to the ones not showing up.
4 -
Me too. I was so heartbroken and disgusted by my DH son at Father’s Day and I still am. Not even a freaking phone call to the Man that raised him all by himself. So yesterday he calls my DH and came over and took him out to eat. I was invited but couldn’t face this awful son. I knew if t saw him it would be a burnt bridge, so I stayed away until he left. I was so hoping son would say something to me but he won’t. He knows and No it’s not cause he loves his father and can’t deal. It’s bring callous, indifferent and just lazy on his part. So, yes boundaries..but how far does one go burning bridges down. I really only have a few bridges in my arsenal but at this point those few bridges are over one-way streets? The isolation makes me question every decision I make now. Sometimes I think “My Reasoner” Is malfunctioning or just plain broke too. Hugs💙💕
5 -
I completely understand, I have a sibling that fights me and prays on my mom's sympathy. Can't come around unless wants something(money). Im trying not to upset my mom but I have to distant myself. I actually was told today that euthanasia is an option. I feel so alone more times than not but I will always be there for her no matter what but when that horrible day comes I will no longer have a sister.4
-
Thank you for your words and prayers. They are so appreciated and needed. When we see some of these relatives, they always express their concern for me, they ask how he’s doing, etc. It makes me angry. You care about me and how I’m doing and how you can help? How about showing up for my DH by sitting with him, give him your full attention, engage him, learn about the disease and how you can interact with someone who has dementia, make the attempt to make him feel “seen”, treat him with dignity. THIS is what would make me feel better. Thank you again for listening to me and sharing your experience.
8 -
Oh boy, did you strike a nerve. My phony sister in law who lives 4 houses up from us (we were here first by 30 years) comes to see my wife maybe once every 8 or 9 days. She loves to tell everyone what a close family they had. Well, she stole from their dad on his death bed. The brothers sued each other. On and on. And the brothers live within a 10 mile radius (they all followed us to the Florida panhandle after telling us we were crazy to move here). One has never come to see her since being diagnosed 7 years ago. The other comes around once every 6 weeks or so. His wife tried to take a picture of him and my wife together and he said no, he didn’t want to remember her this way. I could go on and on. My wife will receive the funeral she deserves. They will come. And then I will never see them again. We were always the ones to bring family together. Now we have been abandoned.
8 -
I’m sorry you are experiencing this as well. On Father’s day, DH’s 2 daughters didn’t reach out until late in the day. You’d think KNOWING that their dad has dementia and don’t have much time left to connect with him, that maybe, on this particular day, they would make him a priority. I used to spend energy trying to get them to connect with him because I know it would make DH happy, bring him joy. Now, I’ve come to accept that it’s not my job to “manage” other people and how they deal with this situation. It really is sad. And when the day comes that they get the phone call their father is in the end stages or has died, they will have to carry the weight of how they had the opportunity to contribute to little moments of joy in his life. A hug to you as well.
4 -
I think about this stuff a lot. At times how the family members behave or do not behave really bothers me. However I always end up back at the same spot. This disease has already caused immeasurable anger, sadness and grief. I choose not to speak or behave to a family member in any way that promotes or expands those negative feelings. I have close friends who I can speak with and unload those feelings about family members without using them in a way that creates more negative emotions. I meet the family members where they are at and engage in ways that are intended to minimize any additional emotional harm. They do their thing… I shine on…
10 -
The insensitivity and inability of my DW's family to show much care for their sister/aunt/stepmother/etc. was so incredibly hard for me. My DW was the oldest of 6 and had 14 nieces and nephews and two step-kids. She was there always for everyone one of them, regardless of what it took for her to do that. And they bragged consistently about how close they all are and how they're the best family ever. I long just watched them and thought, "Uh-huh", but their lack of care for their oldest sister in her darkest hour showed their true colors. I would try and try to organize just nice visits, not respite, and they just couldn't ever find the time. The worst part is that my DW noticed they weren't there for her and would ask about them. It broke my damn heart.
Eventually, one sister showed up and helped me incredibly, after I basically cried uncle and asked if she could help me some. She stepped up. My DW's group of friends were super supportive and there for her. I feel a massive debt to those few who did show up. DW loved it when they came and they saved my life.
But, I spent years angry at all these other folks for not showing up and thought I'd not even have them at the funeral. When my DW passed, though, I couldn't do it. She loved them so damn much and family was everything to her. I planned a memorial with all of them involved. A last measure of love for my dear Suze. I didn't do it for them, that's for sure.
Her family really didn't talk to me at the memorial and not one of her siblings said anything nice about her at the ceremony. I found that so damn sad, though I expected both. I know I'm unlikely to hear from them ever again and I'm pretty sure I'll survive that. Ha!
9 -
I read your post this morning NYCalz and just reading it was my morning saving grace after an exhausting few days with my DHs son and family and brother and family. His son announced that he was coming into town for a visit and to see his dad. I've spoken to him at length about DH status - Mild AD with Anxiety, stage 3-4. After three days, I couldn't be happier that they're heading back home. I do think they're well meaning but clueless, in part because they don't want to know. They did not ask me how they could help. It's as though they want to appear to help but they really don't want to deal with the grit - and certainly not the heartache of caring for their dad. Last night took the biggest toll on me. Even though I've told his son and his brother that after 7PM his dad really starts to fade, they set up a familiy restaurant dinner for 7PM. At dinner they stuck us at the end and barely spoke to us the whole time; then 900 PM wanted everyone to come to brothers home for carrot cake. We were pretty spent but then of course, DH got more and more agitated when I said maybe it's time for us to leave, as he was there with the famliy that he loves. And yet, what did we do when we got to brother's home? We sat together outside and become invisible. No one actively engaging with DH (or with me) ; just all carrying on without a concern. I finally prompted DH that it was time to go; we had a 1/2 hour drive home. When leaving, DH's brother's wife asked me, how are you, what fun things have you guys been doing, have you gone on any fun trips? Good god, what kind of alternate unvierse am I in? !! And we made it home and crashed into bed, with DH agitated all the way home.
16 -
From all the comments, I see this is happening with many people. I have the same frustrations and almost no support from anyone. Many people at our church are aware of our situation but no one ever asked how we’re doing. We attend regularly and DH can still sing in the choir. He has a great bass voice and they are in need of basses. He’s started having trouble with keeping up with the music though. This may not last much longer. After all he does, how is that for so called Christians? Also our kids expect me to keep doing things for them like babysitting, financial support, helping with this or that. I hate to say no but last week I was on the verge of collapse. I slept 10 hrs several nights and sometimes wondered if I was having a stroke bc of blurred vision from utter exhaustion. I don’t think they realize what all I do even though I try to tell them sometimes. I’m not planning on having a funeral. Maybe a small private memorial service. I don’t want all those uncaring people from our church to come. Once he’s gone I will no longer attend, but at this point he enjoys going.
12 -
I feel for all of you. This journey we are on is awful. It is true, the cavalry is not coming. BUT…people are not mind readers and many of them have never really dealt with a person with dementia. Many caregivers find it difficult to ask for help. Now is the time to swallow your pride and let people know what you need. Be specific! That means asking for help on a specific day, at a specific time, with a specific task. Yes, some people will fade away but I think you will be amazed by how many people will step up…and it's often not the ones you expect. You may also have to educate people about this disease. Forward articles via email, share them on social media, or actually print and hand them out. Call me an optimist, but I continue to believe that most people want to help. God bless you all for all you do.
6 -
Sometimes people do not know what to do. I spoke to my siblings (who do not live close by) and said, in effect, “Come now.” My DH (stage 4-5) is still able to enjoy their company. Who knows what next summer will bring? And with that simple invitation, they made the effort and came. Sometimes asking is all you have to do.
7 -
Oh, dear Sparklebutt, I know all too well what you experienced. This has occured to us so many times. It angers me and breaks my heart each time. I don’t care about me, but every time, I wish they had the common sense to focus on my DH, engage, ask questions, etc. My DHs older brother talks around him, and recently, at a social gathering, I observed him LITERALLY turn his back to him as he and other male neighbors created a “man circle”. Talking about golf outings that my husband never was invited to in the past when he still played. No one looked at my DH, or included him in the conversation. They started to show a picture on a phone and passed it around and I could see my DH wanting so bad to be a part of it. It is mindblowing that people can be so insensitive towards family. I’m so sorry you experienced this with his son and that the brother’s wife was so clueless to ask about plans and fun outings.
9 -
”make the attempt to make him feel seen” Oof can I relate to that! My DH is the oldest of 5 and I misjudged what “close” meant. The resentment is real.
4 -
I think about this a lot also. I love “shine on” and that is my goal but it is so difficult not to carry all the grief… so much loss, and to let the resentment go. Thank you for the positive words.
2 -
I could have written this post. Same meal, same outside invisibility and we must have the same sister in law… different planet for sure.
3 -
This is great advice. Keep in mind however when asking for help, you will get to hear about all the things that are going on in the lives of friends and family that they prioritize above giving help to you and PWD.
5 -
MaryMN, never stop being an optimist and thank you for taking the time to comment. I read the comment and let it simmer for a while before responding. I am all for education, awareness, clear and concise communication. In our journey, I have done all of the above. I have asked for help when I needed it and on 98% of the instances, those who offered to be there any time and for anything did not deliver. I have also come to the acknowledgement that I have enough on my plate and prioritize my husband and our time together above managing others’ feelings and educating them about how they could make the time they have with their loved one more meaningful. Some things are inherent - patience and kind gestures, for instance. It is not my job to fix others.
11 -
By the time that both my step-dad and mom passed, it had been 5 years of me being the only one of the six blended siblings to care for them in an AL. In that time, I’d had two back fractures, a knee replacement, my spouse had been on disability for five years… and worst of all, we’d lost a son. I had a combined graveside service for my parents at a veteran’s cemetary on probably the coldest day of the year. Maybe 25 people showed up - none of my siblings/step-siblings I didn’t care - I was just done. Of course I wasn’t done because there was estates to settle.
The hell we go through with this disease changes us and what we do afterwards is throw away the relationships that are meaningless of favor of peace6 -
Allowing family, friends, church to choose their level of involvement with my DH was very painful. But necessary as I could no longer chase their involvement, it was too painful and exhausting. I only wanted him to feel remembered, valued, visited, cared about. The flame of his life was shrinking and I felt like I was the only one seeing it, I wanted more witnesses of his life, the space he occupied.
I fantasized about choosing the funeral home for his end of life service over the church, but I knew full well that would not honor him and he’d want it to be held at the church. Somehow I felt like I would be getting back at people for their “lack”.
Many times I screamed in my head, “Can’t you see this man is disappearing! Try to care for once!” I spent far too much time in resentment and bitterness and knew I didn’t have that kind of energy to waste. So I laid it down and oddly enough, it freed me. I didn’t need them to make it through this journey, I needed love.
When I would get him up in the morning I would say, “Today, I will love you one more day.”
In the end, it was a hard reality for me to accept the level of involvement others chose. But I chose the better part, and I truly learned what it meant to, “love in sickness and in health.”12 -
Tonyac2, very well put!! I too feel the exact way. I just want family, friends and anyone in our lives to love my DW. It just became to exhausting trying to get them to acknowledge her for what she has become. I found it was a waste of time and for our protection of mind, body and spirit we moved on with our journey. In a strange way I have found comfort in this. No matter what we'll finish our journey together.
6 -
Heartfelt comments that brought tears to my eyes. So true.
No one knows what DH is going thru like I do, knows his struggle to try to remain relevant in this life, to try to communicate his thoughts, retain his personhood.
I do understand it’s too hard for others to deal with this disease, seeing what it does to a person, frightened they may be staring directly at their own futures. So I’m not surprised at the non involvement of so-called friends. It does hurt but I’m not surprised. For sure this is a sad lonely experience.6 -
I am very new to this journey. In the past month, my DH has become so hateful, angry and strikes out at me saying the most hateful and hurtful things. We are going to see a neurologist this upcoming Friday. DH has been forgetful for a while but the latest behavior came on very quickly.
DH has two children who could give a damn about their father. DH has four grandchildren, two of which he never gets to see, the other two he might see a couple times a year. DH has been estranged from his children for nearly 23 years. He has no siblings or cousins. DH will be 77 in less than a month.
We are a blended family. I have one child and a granddaughter. My son literally hates both of us because DH is manically depressed and he cannot understand why I stay with him. The depression plus the possible diagnosis of dementia is a really tough process and my son wants nothing to do with it. The good news is my (our) granddaughter is a Godsend. She truly loves her step grandpa and wants to help anyway she can. She’s going to be 18 In a couple months and feels sad that her grandpa’s remaining life will be nothing like the person she remembers.
DH says things to me like if I’m involved in his care, he’s totally “f@cked.” That couldn’t be further from the truth and I realize it’s the possible diagnosis of dementia that’s causing this.
I think about the long term outcome. What stage of this disease is he in. How to get through this with him literally having no family. I think about protecting us from his children who will no doubt surface with their hands out when they realize something is wrong.
I’m dealing with DH fighting me to go for the medical evaluation. I’m dealing with DH cancelling all planned outings, vacations, etc., things that he used to enjoy. It’s so overwhelming. I have been in touch with the Alzheimer 24 hour support line which has been extremely helpful.
I’m sorry for being all over the place. I’m just so overwhelmed by what’s yet to come. Thanks for listening.8 -
Thanks for your words of encouragement Lethe .
1 -
I’m so encouraged by the warmth and transparency of posts on this site. Thank you everyone.
3 -
We also have a very small family. There hasn't been any animosity between any of us. That being said there isn't any help coming my way either. I think most people don't know how to deal with a PWD so they just stay away and don't ask. God bless your granddaughter,
4
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 699 Living With Alzheimer's or Dementia
- 403 I Am Living With Alzheimer's or Other Dementia
- 296 I Am Living With Younger Onset Alzheimer's
- 19K Supporting Someone Living with Dementia
- 5.9K I Am a Caregiver (General Topics)
- 9.3K Caring For a Spouse or Partner
- 3.4K Caring for a Parent
- 248 Caring Long Distance
- 207 Supporting Those Who Have Lost Someone
- 13 Discusiones en Español
- 1 Vivir con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer u Otra Demencia
- Vivo con Alzheimer de Inicio Más Joven
- 12 Prestación de Cuidado
- 3 Soy Cuidador (Temas Generales)
- 8 Cuidar de un Padre
- 23 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 8 Account Assistance
- 15 Help