Seven years of guilt

I have found myself many a time gently telling my peers in support group that it’s OK for us to care about ourselves. And that there should be no guilt about placing a loved one in a nursing home. If only I could take my own advice about guilt.

I don’t feel guilty about placing Mom in a nursing home. I really never have. It had its challenges, and I so hoped that she would adjust quickly (she did). But I didn’t think I was doing the wrong thing. It pains me to see so many caregivers regret even considering the idea of a nursing home. They seem to think it is such a betrayal. It often doesn’t help that they are emotionally and physically drained by the caregiving, making it hard to think clearly. I can say right now with full conviction that Patrick should make use of long-term care for me if the need arises. I don’t want him to ruin his health looking after me.

And yet, I still do feel lots of guilt, about Mom and all kinds of other things. Lately, I have been feeling guilty about not attending support group on a regular basis. In the summer, I had conflicts – the occasional round of golf being one of them. This fall, I have experienced an unusual busy spell that has persisted for about two months related to work, business travel and freelance jobs. I have gotten to the weekly meetings about five times since August, I’d estimate. After a long dry spell, I do recall that it was helpful to get back there at the end of the summer; I had missed the community spirit in those meetings.

And yet, why in the world would I feel guilty for not attending? It’s not as if I am so full of wisdom that I actually make a difference in anyone’s evening. And lots of people cycle in and out. I don’t do myself any good by regretting missing those meetings. I am missing one right this minute, in fact, because I was at work later than I expected to be.

As I was walking the dogs tonight, and wondering why I have been so cranky lately, it occurred to me: I think I feel guilty because I am not as tortured by Mom’s illness as I used to be. For now, at least, I am sustained by the goodness of my own life in a way that lessens my need for the support of my caregiver peers. And even though I don’t actually believe this to be the case, I can’t disregard the worry I have that I might be a bad person if I’m not in constant agony about Mom.

I am so lacking in agony and obsession, in fact, that the anniversary of Mom’s diagnosis went by without a single passing thought in my mind. She was diagnosed with Alzheimer’s on Nov. 3, 2005. Hence the reference to seven years in the title. My guilt actually predates that diagnosis, because once I learned she had Alzheimer’s, I was full of regret over all the arguments we had as the illness was first causing her distress – before any of us knew that. And when I looked after her when she was in assisted living, I was always convinced I wasn’t doing enough. Over the 3+ years she has lived in the Alz center, I have occasionally wondered if I didn’t visit often enough – and I am going through one of those phases now.

Lately, when people have asked how Mom is doing, I’ve had the same answer: She hasn’t changed much in a long time. Translation: She hasn’t lost significant function; she is holding steady. I’m pretty sure that is a factor here. I am used to her current state. Perhaps with the next change in her status, I’ll enter a new phase of grief. Is it so wrong that I accept and am OK with her current status?

I think I am the one I have to convince that it is OK to be OK.


12 comments so far

  1. Pat Caldwell on

    Your loving concern for your mom and the choices that you have made over the last seven years are a testament to your care for her. Her contentment where she is is wonderful, although not always the outcome with Alzheimer’s. With the Alzheimer’s center, you also can be assured that if she needs you, you will be called. I applaud your continued caring, which is at the appropriate level for your mom’s needs.

  2. patwhite67 on

    Emily, Thank you for putting into words what thousands of us caregivers constantly feel. We know we are not alone when people like you voice it.

  3. Megan on

    Hi Emily,

    Sounds like you’re living life fully and being real, the reason I’ve always appreciated your sharing.

    Take care,

  4. Gemma McLuckie on

    I am torn about my dad’s quality of life. He couldn’t have stayed in his home because of safety issues. He is not a retirement villa but a semi-nursing home, so it’s not gracious games-of-bridge living. The rules are much more restrictive. I know the loss of independence is difficult. That is my guilt. I’m even fearful that it is slowly killing him. At home, he walked to see neighbors, did laundry, vacuumed, checked the mailbox. He felt he had a purpose. Now, he’s at loose ends and with each TIA, more confused. I have asked the home to give him a chore or two — sweep the porch, carry in the mail — but my requests seem bizarre to them. I’m sure they think, we have 300 people to keep track of and she’s wanting special treatment? There is no support group to help me.

  5. momsbrain on

    Hi, Pat, Pat and Megan – Thank you all so much for your supportive comments. So comforting…

    Gemma, my support group would welcome you. It’s not just for families who have residents at the Alz center, but for caregivers of people with dementia – of any type. Your concerns for your dad are very similar to the concerns of others in this group. I’m sorry about your worries about your dad – and I think it’s a shame if the staff members aren’t listening to you.

  6. Jeff on

    Hey Emily – I like this blog, because although it doesn’t mention us specifically, the long distance guilt is also present in my life. And some of that is when I was in Columbus last fall and didn’t visit mom, and you had wished I had just to allow you a break. But I also wish you’d give yourself some credit for your contribution to support group. I don’t want you to feel guilt or obligation to attend, but your presence and comments might be exactly what others need to hear. You ARE full of wisdom, both learned and experiential, and you should be acknowledged for that! 😀

  7. momsbrain on

    Jeff, Well, that is very nice of you to say. I just don’t want to flatter myself too much about any wisdom I might have … and I try very hard not to be bossy. I know when I was at my worst emotionally, if people couched their advice in “You should” terms, I really bristled. Everyone’s experience and circumstances are very different, and it just adds stress to be told what to do. I have always appreciated that you and Laura have supported my decisions and not fought me on anything. Many, many caregivers have conflicts with their siblings and other family members. So thank you for that!

  8. Barry Lough on

    Hi Emily – It’s interesting that you confess your recent crabiness and mention it here, yet I found this particular entry uplifting. It seems you have a keen awareness of your feelings and their source. I personally think the fact that, for instance, the anniversary of your Mom’s diagnosis passed without notice is a great sign – as you’ve revealed you have just come to a level of being able to carry on with your life and its demands while knowing your mom is at a stable condition. While I’m sure your presence at support groups is beneficial for you and the others in attendance I certainly hope you don’t impose guilt on yourself for missing when you do. As you wrote in your response to the essay, your life matters too.

  9. momsbrain on

    Hi, Barry – Your interpretation that this entry is uplifting is very interesting and enlightening to me since I have been feeling rather blah. I do use this blog to explore my feelings and their source, but don’t always feel convinced of how aware I am. I like to pretend I know how to stop the guilt but that is just denial on my part… Thanks for commenting!

  10. Elizabeth on

    I agree with Barry on this… you are able to capture your feelings of guilt and meh-ness in a way that is actually quite inspiring. It is uplifting and instructive in terms of what you do for Bonnie as well as what you do for yourself, in exploring and sharing your thoughts and feelings on the blog. And I agree with many others here who mention that your insights at support group are probably really helpful for others – the thoughts you express here certainly are! (Not to inspire any guilt for not going! That’s clearly not helpful for anyone.) It’s just to say that I really admire what you do, what you write, and the explorations of self/thoughts/feelings that you share – and it’s helpful to acknowledge that all of those can be really difficult work.

  11. Joy Walker on

    I just found your blog and I love what you have to say and how you say it! You have very similar viewpoints to mine and we have written about a lot of the same things. Thank you for your calm, thoughtful words. I’m going to link to your site, and would love it if you came by mine for a visit. Take care, Joy Walker, 3 Years and Thirteen Dumpsters.

  12. momsbrain on

    Hi, Joy. I’d be happy to also link to your blog. I just took a quick glance. I thought I was young for this, but you were definitely younger than I was when this all began! Thank you for your kind words. I look forward to reading more about you. Take care, Emily

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: