Monday, March 02, 2009

Ambiguous Loss

We finally got to an Alzheimer's support group today, Dad and I. We've tried to get to a couple others but the scheduling never worked out. Today was the one we really wanted to go to, since it's at the Ida Culver House where Mom lives. I had to laugh on the way in, when Dad said something about how he hoped they didn't ask everyone to talk about how they were feeling or something. Um, Dad, I said, I think that's probably exactly what they're going to do.

But it went just fine. The group has been meeting for about two years and the facilitator was really skilled at making the conversation seem very natural and not along the lines of "Ok now stand up and tell us all of us strangers all about your feelings, sir." I'm so proud of Dad, watching him in these new situations - he's really opening up in ways I didn't know if he would be able to, talking honestly with people about his situation and feeling and sharing a lot of complicated emotions. We both really liked it and are definitely going to go back.

It was mostly Alzheimer's spouses, and two daughters (me included). Most were still caring for their partners at home or in assisted living, but a few had partners who were either in an adult family home or in the dementia unit. One of the ladies at the end said how wonderful it was that there were adult children there supporting their parents, which made me totally lose it and cry in front of everyone.

Afterwards we went to visit Mom, who wasn't having a very good day. She was really agitated and upset when we got there, off in a delusion about teaching classes and how hard she has to work that is probably rooted in how hard she finds all the every day tasks she faces right now, and as we sat and talked with her she relaxed and calmed down and started to smile and converse again. We couldn't stay very long because we had to get home to Sofie and it just broke my heart to leave her so quickly, after about 35 minutes, when I could see how much good our being there was doing her.

Came home and plucked Sofie out of her nap and held her for a while and ended up crying and crying. (Me, not her.) She was trying to get me to read a book and I just couldn't calm down enough to do it, and she finally said hopefully, "Well how 'bout Daddy read it?" Which made me laugh even while I was crying, and it was just such a complicated and sweet and sad moment.

I'm feeling much worse these days instead of much better - I was definitely feeling better last week about the whole situation than I am this week. Probably things I just haven't given myself time to process before now finally seeping up. It's so hard to see my Mom so sad and upset and watch my Dad struggle not to cry in front of a roomful of strangers and feel my own sense of bereavement and all of this all mixed up together with a hundred other things.

In the group today they talked about "ambiguous loss," which was very interesting - the idea that the person you love is physically right there, in front of you, but in a sense they're no longer there too. It's a terrible loss, but it's terribly ambiguous. As one woman whose husband has advanced Alzheimer's put it, "you're neither a wife nor a widow." Definitely true for Dad. I don't know how to word it for me, but the same feelings apply.

Sometimes I feel, like today, much more like a parent to Mom than anything else, and to her I'm usually just the nice lady who visits her rather than anyone she knows. She recognizes me for short periods of each visit but it comes and goes.

Sometimes I feel like my main job is to be Dad's caretaker in all of this, more than hers, because he seems so lost and has no one else to help him, and she has a lot of people watching over her right now. Sometimes like today I feel like I should be with her a lot more than the four or five visits a week that I do manage to make. There's no right way. It's all devastating.

10 comments:

Anonymous said...

I may know a little about how you're feeling worse instead of better. When I dropped my son at college, I was so happy that he'd found such a good college for himself. I left him across the country without hardly a blink. But sending him back after Christmas was hard. I guess because now I know that he's gone. I'm so proud of him, he's changing so much, it's all for the better, and I refuse to be clingy, but still. - Robin

Claudia said...

Megan, I'm so sorry you're having to go through this. Big hugs.

Picnicking in Dreamland said...

For those of us who have seen this scenario unfold with grandparents, and may soon experience it with our parents, your eloquent and poignant words always resonate. Even if I didn't know you, they would. You honor us by opening up in the quieter moments of your life, sharing your truth. Thank you.

Cheryl said...

ambiguous loss...wow...I pray for strength and courage for you and your Dad.

Roslyn said...

I think I understand-we lost my precious MIL & my dear aunt to this dread disease.We lose them twice, once to the mental issue & then to the death .
I as sad for you.
Blessings,
Roslyn

Roslyn said...

I think I understand-we lost my precious MIL & my dear aunt to this dread disease.We lose them twice, once to the mental issue & then to the death .
I as sad for you.
Blessings,
Roslyn

le boulot said...

Wow. that sucks ass. I wish it wasn't like that for you.

cottoncolors said...

So sorry you are going through a rough time. Sending you good thoughts.

MeganZ said...

Thank you so much, Robin, Claudia, Picknic, Roslyn, Cheryl, and Fran - I really appreciate your comments and kindness. I'm bad about responding to comments these days (and, well, always) but just wanted to tell you I appreciated it...

Dina Cuomo said...

Meghan
Ambiguous loss is a very good description. My mother is also suffering with Alheimer's disease and I feel that she is mostly gone. It is heartbreaking to still have her here,alive, but not really be able to communicate like we once did. Sometimes she has a really good day. That's what I hope for when I go to visit her. Today was one of those days!

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