The comment wasn’t a comment, it was a plea:
“Please help me with the ‘right’ words to say to my sister,” Nancy wrote. “She won’t visit our dad or help in his care because she says she just can’t bear to see him this way and she wants to remember him how he was.”
Countless care partners find themselves in the same situation as Nancy. It’s frustrating, painful, and stressful when you don’t getting the support you need from others. But we can’t control their thoughts and actions.
My reply to Nancy came from the heart. I responded:
Everyone deals with the changes dementia produces in someone they love in different ways. Some people really can’t bear to see other people change, whatever the changes might be; some people want things to remain the same even when that’s impossible. Some people cannot abide suffering. I understand that–having to watch loved ones suffer is torture for me. On the other hand, some people don’t have an empathetic, sympathetic, or compassionate bone in their bodies. I’ve experienced the tragedy of that firsthand. So have thousands of other care partners. The only person we have control over is ourself, and sometimes we feel we don’t even have that.
If I found myself in this situation, I might try something like this:
“I understand how you feel. It’s really hard to watch Dad decline and not be able to do the things he used to do, or to relate to me in the same way he used to. I feel sad Dad is ill. Really sad. But I have found a way to see him as he is now from a new perspective. Not as someone less than who he used to be, but as someone different than he was in the past.
I still see his core and spirit, which to me remain the same. I’m happy and grateful I can still connect with him and keep him company at this time when I believe he really needs me. I think about what he would do if I were sick, or facing a challenge, or whatever. And even though it’s hard, I want to hold his hand because I think it’s the right thing to do and because I love him. I think about what I would want if I were in his place and I try to do things I believe will bring him pleasure and joy.
I understand you don’t feel the same way I do, and for you it’s too painful. My wish would be that you would try to see him in a different way, as the person he used to be and still is at the core of his being. But I understand if you’re not able to do that. Just because I wish it, doesn’t mean it will be so.
I remember Dad as a vital, engaged, dynamic person full of passion and energy. And I still se those qualities in him despite this disease. I want to celebrate who he is right now as well as the person he was yesterday, last year, 10 years ago and even further back.
I don’t believe this disease can take away who Dad is. I value him as he is, just as I also cherish the memories of who he was and the relationship we had. I don’t believe Dad will be gone until he dies. I understand it may be too painful for you and I’m sorry for your pain.”
That’s what I would truly feel in my heart, and that’s what I would say. I believe we have to speak our truth, and then detach from the outcome, all of which is easier said than done.
“That’s my truth, Nancy,” I answered. “You have to find your own. When you do and when you speak it, you will be free to joyfully do what you must for your dad and you won’t waste energy trying to force your sister to behave in the way you think she should. What is right for you may not be right for her.”
I closed with a qualifying note: “It’s a whole other kettle of fish if your sister has legal responsibility for your dad and is neglecting his care in some way. If that were the case, a completely different course of action would be required.”
All of this said, an equally valid and necessary response in these and other situations when all the right things have been tried and failed might be to tell siblings, family members and others to “Stick it!”, forget about them and move on.
You gotta do what you gotta do.
My Alzheimer's Story 
Well said. We CANNOT change others. We SHOULD speak our mind lovingly and gently. The key being “and then DETACH!” Keep on keeping on.
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Yes, Michael, the “detach from the outcome” part is difficult. In fact, all the steps in this fourfold process are extraordinarily hard, even though they sound very simple.
Here’s the process in case you haven’t seen it before:
1) show up
2) pay attention
3) speak your truth without judgment
4) detach from the outcome
Sometimes it’s hard to even get to step one 🙂
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My kids are not able to watch my mother’s decline anymore. If we lived near her I would make a much bigger effort to get them over to see her, but since we don’t it isn’t possible to get them there to see her. Personally I don’t get the whole I don’t want to remember them in this way as these are all parts of the whole person, but I respect that others feel differently and don’t push.
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Yes, I’m with you Holly ❤
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All I can say is thank you, thank you, thank you–all it takes is someone’s different point of view to steer us in the right direction. Still in small steps, but moving forward. Finally getting her to see the joy in just holding his hand and being there.
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Nancy, if you are the main carer than your sister has to make the effort. Not just for your family member but for you as well. The carer needs as much support as the Alzheimer’s relative. I had to fly my dad over as our mom had a car accident earlier on the year (she is recovering and now doing well) so dad is now living with me. My sister doesn’t do as much and doesn’t visit as often as she should. Our dad doesn’t notice, but I do! And I need her there as much as she can be, to help out with laundery, cooking meals, ironing… I am exhausted 😦
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Anna,
Thanks for sharing your insights.
It would be nice if everyone else did what we wanted them to do, but unfortunately they often don’t and there’s no way to force them to do so.
All we can do is what we can do.
I was also exhausted and eventually nearly broke down for lack of help, despite having outside paid support five days per week.
We can’t force people to do things they are unable or unwilling to do. The result is something usually breaks. Sometimes it’s us.
That’s the sad reality 😦
I’m sure Nancy knows best what to do and how to move forward in her particular situation ❤
Thanks for everything you do for your mom. Heaven notices. And so do the rest of us ❤
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As a retired caregiver, I’ve had to deal with my siblings’ callousness. Let’s not confuse selfish sentimentality with love, sense of responsibility or sensitivity. When a parent is rendered frail by illness, that is the time to show what stuff you are made of. Are you loving, loyal, single minded in your purpose to care for your loved one?
Faced with this terrible illness, we all feel despair, anger, wounded, and a desire to flee. How we manage these emotions and overcome them defines us as caregivers.
A bit more than a year after my retirement from my role as sole caregiver (my mum passed away after 7 years of illness), I am totally estranged from my brother and sister. They treat me like they treated their mother.
The only way I can live somewhat comfortably with this is to recognize that even if they went AWOL, I still love them because they are my brother and sister. But that doesn’t mean I have to like them.
As you say so well, we all have our perspective and the key element is to deeply respect other points of view. We all have to live with our decisions. The decision one makes to care deeply and without reserve is a personal choice, bringing a deep weariness but a profound satisfaction as well.
I just found your blog and I seem to understand that pressure was put on you to censor your posts. Should the pressure have been brought to bear by the medical community about medication, might I suggest that you tell your readers about a medication list published by members of the medical community itself spelling out what meds should not be prescribed for the elderly. It is called the Beers Criteria (do a search on Wikipedia under Beers Criteria for a full explanation).
I would suggest that caregivers everywhere print out a copy of this list and keep it with them at all times to monitor medications prescribed to their loved one. Keep up the good work.
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This is a great post, Susan. I am having a hard time when I visit your blog figuring out which is your latest post. Is there a trick to it? I often don’t leave a comment because what I pull up is a post that was written quite a while ago. xo Diana
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Thanks Diana. And thanks for the feedback, based on which I have moved the “most recent post” widget higher up in the right hand side bar so that now it appears directly under the subscription widget; it shows the last seven most recent posts. There is also a recent post “slider” on the homepage; it “slides” the last five most recent posts; here’s a screenshot to show you where the the list widget and the slider are on the homepage:
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On the article pages, there is no slider; but the list is still on the right-hand side bar thus:
However, if you are a subscriber by email then you should just have to click on the most recent email that you get and it will take you directly to the most recent post. But maybe that’s not the way you organize your “visitations”… ?
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