I appreciate all expressions of comfort from people in my early widowhood, but I must say it irks me to have people (even friends who should know better) repeatedly say, "Now you can get on with your life". This IS my life. All the years I spent caring for my husband at home, and all the months I went to see him at the LTC - that was also my life. If they mean I can start looking for someone else, that'll happen when pigs fly. I don't mean to sound bitchy, and I know people don't always know what to say, so they say what they think they should say, but still....it hurts when people say it.
Give yourself time - and if bitchy feels good, then so be it! You're allowed to be sensitive, you've earned it.
Whatever you feel, whatever your friends say, in time, Nature takes over and your life will change, but there's no hurry and no specific timeline. You are still in the caregiving mode, it's not like you can switch it off overnight. No one means to hurt you. Say what you feel here. It's all OK.
People now have very bad manners. Even so, I'm surprised that people (including friends!) repeatedly say to you, only one month after your husband died, that you can now "get on with your life." That is a callous and tasteless comment to make to a bereaved person. You should simply ignore it.
Joni1957, I’ve been thinking about this off and on today . . .
The people making these comments don’t see life the same way we do. They probably know only the “normal” life – the same kind of life most of us once lived. Compared to you, your friends are like naive children who know only a life of privilege. They are speaking out of ignorance.
When others watch us consumed by issues of personal care, hygiene, behavior, health aides, adult day care, LTC, etc., they don’t see that as “our lives.” They think we are taking a leave of absence from our lives to perform these duties. So when that leave of absence ends, they expect us to resume our regular lives, to “get on with our lives.” We know better than that. What we go through IS our lives. It is not a leave of absence.
Not fully understanding each other is one thing but dishing out unsolicited advice it is quite another. It’s really irritating that people feel so free to tell us how to live our lives when we have not asked for their advice in the first place.
I think I mentioned this in my recent blog series or under another topic - a very close friend said that exact same thing to me when Sid was placed. "He's well cared for, so now you can get on with your life". Huh? What?
Placement or death, they are still part of our lives, and there is a lot of grieving to get through. It really bothers me when people say that.
Joni1957, I believe that people have no idea what to say to others when they lose a spouse. You can get on with your life makes it sound like they think we have been on 'pause' all this time. My husband's sister, who lives in another state and hasn't seen him in about 5 years, wanted to know how he went to the bathroom when they have to lift him in and out of wheelchair to bed. "oh, he has to wear diapers?" Their mother had dementia but was an easy one to take care of, kind of like the smiling lady in the Exelon Patch commercial so she has no idea what her brother is going through. Called a few days ago and wanted to know how he was, any better?? Never asked how I was doing. Joni we all get it so feel free to vent anytime. Dorie
I am widow # 3 in 3 years at the company I work for. Widow # 1 told me she would be asked by 2 male coworkers why she was still crying after 1 month or so. I do think some people are clods but I also think this is scary for others to look at and reflect back on their lives and think about what if this happened to me or my spouse. This is a damn situation to be in and we didn't ask for it. I certainly didn't have a clue about the depth of grief that I would feel. I now know what widows # 1 and # 2 went through. I signed sympathy cards for them but I did not truly understand "it". It is something you have to experience. Just shine on and ignore the people who have not been there..yet.
dorieIMI - guess I am the odd woman out. My life has been 'paused for the last 2 years since I quit working. It will be on pause/hold until he dies or at least is placed. So ya, when he dies or is placed I can go on with my life.
I usually do not say anything when tragedy strikes for exactly the same reason you are talking about. Even if you say the most neutral comment it can still set someone off, taken the wrong way. Others no matter what you say comes across wrong. Then there are others who aren't phased by what people say. So it is easier and safer for me to keep my mouth shut.
I really like the comments from all of you. People just don't know what we are going through either in death or placement of our loved one. I am continually being told by staff and family to try to " move on " or " he is well cared for, take care of your self and find a new life. I wish I could but I don't know how to just leave him there and "move on". If any of you know how to just shut out your feelings for this person you have loved for so long, let me know!! The mourning has begun for me and will continue after he passes. It"s the long mourning" I have read about. I don't know how to answer these comments.
Now and after DH is gone, my life will never be the same. Right now my life is taking care of DH, and being his voice, even though he is in Memory Care. Everyone asks me questions like, are you selling the house, what do you do for yourself, you should go somewhere to get away, do you have hobbies you can do again. Right now I am lucky if I am not in a fog. I have been a caregiver for 30 years now. No, not for my husband, for my family, husband, 2 kids, 2 step-children, one dog. No one asked me these questions or said you need to do something for yourself then. Just mad at people's insenativitie. Then I have people asking me (DH's mom) if I went back to see him after spending 5 hours that morning with him. I have only missed going 3 days since his placement.
When Larry was still alive four years ago and still getting around on his walker, one nursing supervisor, with perfect seriousness…genuinely thought she was counseling me properly…said, "Now, you really have to find a boyfriend."
When I was in grad school in the 1970s, I lived on a teaching stipend of $3,000 per year, some money made from extra jobs, and casseroles donated by my mother. My friends were in the same situation. We all looked forward to the day when we would get "real" jobs, live like "normal" people, and start "living our real lives." One of our teachers would get alarmed when she heard us saying that and warned us, "This IS your real life," You are living your real life NOW." She was right. Looking back 35 years later, there is no question that those years were part of my real life.
I agree with everyone. Those comments come to me too from a variety of people including professionals.
What is a good come back line to, "Well now you can get on with your life." I like your teacher's myrtle, "This is my real life. I am living my life now."
Any others people use? I am usually so stunned with their lack of insight, even now, three years after my husband went into care.
Charlotte, By paused I meant like you can do with tv. You pause your life to cope with alzheimer's, but it is not a pause, it is a grueling, long, hard time and is just what your life is now. If we can survive these years will still have a life. Of course life for those of us who are in our later years don't have a lot of time left for a (at a loss for what to call it) life. I'm 79, still ok healthwise but that can change in the blink of an eye, and I may not outlive hb. He is in wheelchair, takes two to lift him in and out of bed, can't feed himself anymore, etc. Still his body holds out. Dr ordered a drug (Norco?) for pain in shoulder, it's acetometiphin and hydrocodone, and has knocked him out on very low dose. Now I have to get agressive and have them stop it so he is able to be awake to eat. even though he is getting good care I think of NH as a holding pen for people waiting to die, They have many dementia patients there and it just gets to me to go in to feed him as there are at least 10 who need to be fed in his section of the dining room and all are a real challenge to get anything down them. State regulates what they are to be fed and an awful lot of wasted food because they can't eat it.
Besides coping with the dementia, we still have to live our life with all of the challenges that go with it. I am so down right now due to financial issues, family issues, you name it. Sorry, I do have faith that it will get better. Of course it can get worse before that! Dorie.
Maybe our perspectives differ depending on how long we spend in Dementia World. For me, it has been 8 years since diagnosis. That's twice the time I spent in grad school (mentioned above as "real life") and it's longer than the time I spent at my first "real job" after that. More to the point, dementia has officially been part of my life for one-third of my 24-year marriage. I am not "on hold." I am living my life (such as it is).
I agree with Charlotte that sometimes we can be too sensitive about what others say. Other people usually mean well so we should take their comments in that spirit. The problem is hearing the same thing from many people.
I have not had to deal with this issue yet (except for "take care of yourself" - yeah, right!). My husband is still at home & from the way it looks at this moment, he will be home for a long time. As I've been reading through the comments, it came to me that maybe I will be able to say to those trying to help, but not having a clue, "I'll forgive you for saying something like that because I know it's hard for you to understand what this has been (is) like for me". Or words to that effect anyway - maybe not so "wordy".
Just a thought from someone who hasn't walked in those particular shoes yet...
When I took early retirement to care for my husband, many people at work said they were envious, how lucky I was, now I can travel and have fun. Every time they said things like that it reminded me that many people do get to live lives like that in retirement, but my husband and I would never be able to. It was just like a knife to the heart, not so much because people are idiots (ooops, did I say that out loud?) but because it reminded me of the real reason I had to retire. In a sense I feel like that when people say "get on with your life". It's not just that it's insensitive (which it is) but also because it brings home my husband's death to me in a new way.
And OMG, Elizabeth, a nurse at my husband's residence said the same thing to me about getting a boyfriend! She said "a lot of the wives do it". I was so stunned I didn't know what to say! Thank you all for your comments, I don't know what I would do without this site!
Get on with our lives? Say what? My life for the last 14 years has been taking care of my husband. Just exactly what life do they think I have been living? I am sitting here looking at a pile of bills that come in every month. Same bills...less money because I had to retire in order to take care of "my life". Now that my husband is in NH I am racking up the miles on our car and watching the man I have loved for 36 years disappear. It is totally amazing to me how people can not only disappear when a couple no longer is a couple but how they can truly not understand anything about this!! We are burning through our savings with no end in sight. I am only hoping that I do not have any health problems myself. One wife that I have met at the NH (her husband is two doors down from mine) said she needs dental work badly but unable to get it done. What sacrifices we have made, what loyalty we have shown, what love we have given. We deserve DIAMONDS in our crowns.
As far as what people say people to others, I have rethought this a little. For what it's worth . . .
***Those Who Are Recently Bereaved*** Someone who lost a spouse less than a month ago (like Joni1957) is in an extremely vulnerable emotional position and can never be seen as too sensitive. There is no mystery about what to say to a person who has just lost her spouse. People should say, "I am so sorry." If they want to add something, they can say, "Bob was such a great guy," or "I'll call you next week to see if there is anything I can help with." They should NOT say to a widow who is practically standing at the grave site, "You should get on with your life," or "You should get a boyfriend," or "You look like hell," or "Now maybe you will sell that white elephant of a house you live in," etc. Recent widows and widowers should not have to field such comments.
***Those Whose Spouses Are In LTC*** I don't think we are in the same emotionally vulnerable position as those who have just lost a spouse. So we should not act like wimps. If someone says something we think is out of line, instead of sulking, we should address them directly. I am not proposing a snappy comeback or a one-liner. Mim suggested a good response. Other responses are: "Thank you for the suggestion," or "I know you mean well but you really don't know the details of my situation," or, "Are you seriously proposing I cheat on Bob while he is in the nursing home?" or (if this is your style) "If I wanted your advice I would have asked for it," etc. Or we can just laugh. Or we can "consider the source" and roll our eyes.
I had to chime in here on this (caregiving) being my life. We're now into the thirteenth year since diagnosis. I just did some figuring, and that is about 27% of our 44+ years of marriage. It is also nearly 19% of my entire life! (It was a good thing that I was sitting down when I saw that second number.) I find those to be really scary--and painful--figures. Sometimes I think about how if someone had started first grade when DH was diagnosed, that they would now be in college. These many years of caregiving seem even longer than that. And, of course, the dementia had been slowly and painfully making itself felt for years before it was finally diagnosed.
At this point, I can barely remember any other life than this nightmare. So yes, when somebody makes one of those comments like you all have mentioned, it's pretty hard to take. When DH was first diagnosed, my sister told me, "I know it's hard, but you'll get through it, and then you have the rest of your life." I guess she missed the small detail that my husband would then be dead. DH's brother told him that it must be nice not to have to get up and go to work any more. (My husband was diagnosed at 54, when he was fired from his last job. By then he didn't recognize some of the people he worked with.) I still can't believe his own brother said that to him.
One of these days we're going to see news reports of some enraged caregiver slapping somebody silly for saying some of these things. I'm really tired of it always being the exhausted, stressed-out, grieving caregiver who is supposed to be understanding about these comments. We're always supposed to be calm and polite and let things roll off our backs. We have to grit our teeth and say that people just don't understand. Well, I'm about to become a public information officer to help those same people figure it out. If we, the people most intimately involved in this life, don't help people understand, then who will? Frankly, when people make rude, insensitive, and unkind remarks to me about the process of my husband's terminal illness--and/or how I'm handling it--I feel like I have a right to respond. Mim, I thank you for your statement: "I'll forgive you for saying something like that because I know it's hard for you to understand what this has been (is) like for me". Only I think I would say I would try to forgive them... And eventually, maybe I'll actually be able to do that.