Need to say no
I asked this in another discussion but came here due to the recent loss of my husband just a month ago. I am frozen right now with grief and am not ready to socialize. A cousin asked me to lunch tomorrow (we are not that close), as he is passing thru my area, and I said yes, but now I really don't want to go. And my husband's sister invited me to her son's house for Thanksgiving (haven't seen them in years), and feel pressured to go
I just need permission to know how to say "no" to those that don't understand the loss of a spouse due to dementia and it was in a relatively short time. Sorry if I posted more than once.
Comments
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Just say "No" when you do not feel like being among others. I too have struggled with this same situation several times now since the loss of my fear wife 2 months ago. I have tried my best to explain to all the family, close and otherwise, that my life right now is day to day and even changes within the day. Our grief does not follow any rules and, in my opinion, is at a level that is beyond what many have ever experienced or will understand. It caused some consternation initially but I offered them all articles and information to help them understand, but my bottom line right now is that I will not make a commitment to anything until the last minute. I have committed a couple times and then backed out at the last minute. We do not know what each day will bring us, what will trigger our flood of emotions, when we will be able to engage "normally" again, if ever. Sharing information from here with family and others can help some of them understand better the depth of our grief. Some will never understand. If they truly love you, they will support your need to move ahead at your pace.
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Eloise, anyone who cares about you should understand what a difficult time this is for you. I lost my husband in early October last year, and for a long time, I needed to stay home with my two cats and keep the circle tight. I found it helpful to tell people I just wasn’t t up to socializing then, but that I hoped that they would ask me again in the future, when I was ready. Some of them actually did.
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Eloise, I'm so sorry on the loss of your husband.
This is a very difficult time for you, and howhale said it best "If they truly love you, they will support your need to move ahead at your pace." I know that's how it was for me when I lost my sister to this terrible disease.
In terms of how to say no —- I'd just say what you've said here, essentially that you're not ready to go out yet.
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Thank you for replying to my post. It helps to see others in my same situation. I made up a story when I told my cousin I couldn't meet up. I have to learn to go at my own pace
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take your time. You will know when you are ready. It’s been a year and I’m just now forcing myself to go to family get togethers. Once I get there I do enjoy it. I just take each day at a time and see how I’m feeling. 💜
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"One Day At A Time", a sitcom from the 1975 period by Norman Lear. Who would have thought that that title would mean something so different for so many of us decades later. It is so helpful to read here that I am not alone in my daily struggle to get through another day. I think most of my family, after just over two months have started, just started, to understand that my path forward may be long and uncertain. Every day often brings a surprise and we have to adjust to it because we cannot change it. Today I had a new experience I did not expect. For several days I have had contractors working at the home to catch up maintenance left undone for the past years. Over those few days I was able to maintain composure so as not to fall apart. They finished yesterday afternoon and my world returned to silence, alone and adrift. It dawned on me that I had not broken down in tears over those few days and this morning at 3 am they, the tears, returned with a vengeance. Our paths forward are not simple, clear, predictable nor easy and taking the next step at your pace and in your way is the "right" way to do it. Sharing information with family did seem to help some understand that I was not unique, nor unstable or at risk, just grieving in my own way. Having provided them the explanation relieved me of having to make up excuses, (which I did many times) for not participating.
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Nine months in, and I still cry at the drop of a hat. In public, at church, wherever. I don't have family occasions, but still have to carefully select which activities I participate in. And that can vary day-to-day. Some days I'm up for being around people, and others I'm not. You're not alone.
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Keep this conversation going. I think we can all relate to having a hard time saying no and committing to things we don't really want to do. And how to navigate.
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I have often thought that once this is over all I want is to be alone. I’m not sure why since loneliness is one of the biggest problems my DW and I have now. Perhaps it’s because I feel abandoned by all those who should be making sure we’re not alone. Like Howhale I tried to educate everyone on what this is and what we’re going through. But at the end of the day everyone just looks out for themselves. So yes, if you don’t want to go out or be with anyone you don’t owe them any kind of explanation. Just say no.
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My husband died just died 9 days ago. I feel so grateful for coming across this discussion. A dear friend of ours came to stay with me for a few days. Though helpful and a loving gesture, I asked him to leave sooner than planned. He understood.
We are struggling with deep grief, combined with physical, emotional and spiritual exhaustion. Just looking for peace.5 -
So sorry for the passing of your husband but hopefully you will find some comfort here with us. Our need for processing our grief confuses many, even within the family who have been closer to the path we have been walking. You are fortunate to have a friend who can understand your need and accepted it without judgement That is a good friend. For each one of my friends or relatives who actually took the time to read comments here and another site I use, their understanding of our grief and their support has changed. Hope you continue to find comfort here among friends, I sure have and it helps so much.
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Tonight I cried...I hadn't been able to until now. The loss was so viceral, I felt it to my very core. I hope this post helps others in this journey of grief, sometimes it just takes time to feel
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The tears come out of nowhere at the strangest times!
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thank you, howale
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First Thanksgiving alone. I am not sure how to feel. I hope it is still okay to post since my husband passed. I am doing laundry and cleaning the house! And all alone without him…
I
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It's absolutely okay to post! I lost my husband in January and mother in March (both had dementia w/comorbidities). This was my first Thanksgiving alone, too. After I got home from Mass this morning, it was just another Thursday.
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This is my first Thanksgiving without my DH as well. It was his favorite holiday, and we always had everyone to our house and made a huge deal out of it. This year I just could not do it, so my sister stepped up. I don’t know what I expected, but I was home alone most of the day (by choice) and went over there just for a few hours. @fmb hit the nail on the head: the day passed in a blur…it was just another Thursday.
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I have read that unless you say in the front row at the funeral no on gets it. My sister in law is sweet to stay in touch with me ..she thinks she is distracting me. But there is not one second that ever deters from my husband, ever
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Hello friends.. This is a long post… I just introduced myself to you today with a picture of myself on vacation with my late husband. In previous posts, those that have followed me, knew how desperate I became with aggressive and violent outbursts my dh had. As a positive hope to others today, I now remember a gentle, quiet man that gave me unconditional love and joy of life prior to the devil of dementia that took him away from me forever. Be kind to yourself when you grieve, allow for the joy of rememberance of who you fell in love with, as I am just now allowing myself to feel.
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beautifully said. Hugs. 💜
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Thank you @Eloise0304 !
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What do you say to well meaning relatives when they overstep their boundaries and ask personal questions? I just lost it, broke down
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Maybe “I know you mean well, and I appreciate your concern, but I don’t want to talk about that.”
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I happened upon this quote. Hope you can open it. It resonated with me
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First Thanksgiving, first Christmas without him, and now, DH birthday would have been this coming week. How many firsts will there be for me to endure. Being alone is so much more than being lonely
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Eloise, this has been my first holidays and my dear wife's birthday in December as well. It has been, frankly, a terrible time. I did join family on Thanksgiving and Christmas for a meal and then the first to leave. Just too much. Your comment about being lonely versus being alone struck a chord. There are days sometimes when I may not speak to another human. Texts have replaced voices. People are busy with their lives which must go on. I talk to my dear wife but it always in grief and, of course, there is no reciprocal sound back. It is not just the absence of my dear wife that creates being lonely, but, rather, the absence of life as everyone else knows it.
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I too have been facing the firsts…of Christmas, Thanksgiving, New Year's, my birthday. My son and his wife have been wonderful to me and I have had so much support from people in my daily activities, but you all know there is this deep chasm. After my DH passed on November 13 of this year I couldn't face my volunteer activities or the social activities of my friends…couldn't eat or cook. Slowly I have started doing some things again. I have a white board where I used to post our activities before he went to memory care and I do it still, but I also put the number of days since he passed…today it says G 45 days. Makes me feel he is a part of what's going on for me and indeed he is. I've found sweet notes he wrote to me as I slowly go through his stuff. Writing and reading posts in this group helps me be less alone with the depths of my grief and to feel I am okay with whatever I choose to do or not do.
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This is exactly how I feel - the absence of life as everyone else knows it. In the four months since my DH passed, I've been surprised at how everyone wants me to just go on. I help with the care of my 94 year old mother with my brothers. Just a month after I lost my DH, my brothers wanted to have a party for my Mom's birthday. There was no way I could happily join in singing and celebrating - so I just went at the end and held it together for 30 minutes. Even now, the expectation is that I soldier on - and somedays that just can't happen. I've heard "I just can't imagine how you feel" too many times - I wish they would try to imagine what losing a spouse of nearly 50 years feels like, but I honestly think its just too painful for anyone to want to try. It's the loneliness but also the loss of my life as a couple and the future I thought was mine - it's like I'm in a new world that I wouldn't have chosen but have to live in. Sorry if this is too depressing - I do have hope that time will lessen the pain and strangeness of being alone, but i don't expect or want the grief to leave.
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These earlier posts are so like me right now...not talking to anyone for an entire day ( for me, sometimes days), people saying they "can't imagine how you feel", and marking the calendar with the number of days or weeks since their passing. I am grateful for this group and to those that share their same experiences of these difficult days, weeks, months of loss of the only ones that made us feel never alone. Thanks to you all
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I still am finding it hard to get up, take a shower, and get dressed. I am sleeping in my clothes, I am too tired to get into my nightgown. I can't make even the easiest decisions and get anxious when I must. I don't want anyone to visit me at my house, because it is my safe spot and my sanctuary. If someone wants to visit I always meet them at a restaurant. And being lonely, as we all are, sometimes feels comfortable. When will I get to the other side of all this, or do I just learn to live with my shattered heart?
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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
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