Friday, August 19, 2011

An Issue

Carol has started going to a support group for caregivers, which is great.  She came home and told me an issue had come up that if the caregiver needs to be taken care of for a period of time (for instance because of a medical issue), the person with Huntington's, depending on how late in the disease he or she is, might not be able to take care of the caregiverWhen you look at the issue long term, it’s hard knowing that the HD person can’t be there for the caregiver in those respects. The lopsidedness of it is difficult. The caregiver spends all this time taking care of someone knowing it likely will not be reciprocated.  I said I was sorry about that.

She later told me she was frustrated that my only response was “sorry.” She did not see that as a conversation about what happens long term, how do we deal with the issue as a couple, how does she deal with the issue in order to take care of herself, because clearly that responsibility will fall on her? And how does she get me to communicate, i.e. have an actual discussion?

In the later conversation I said I was sad about not being able to take care of Carol.  She pointed out she is going to have to have another hip replacement at some point, and will need her friends to take care of her.  This makes it very important she keep up with her friends.

The present moment is sunny.


  1. I really enjoyed going to the HD caregiver’s support group. It was good – I liked having other people to chat with who are dealing with similar issues. Laughter is a healthy medicine!

    The issue of who takes care of the caregiver is a big one. The irony is that you know you’re most likely not going to get what you give, because HD just doesn’t work that way. On some level this is true for all of us – none of us have any guarantees about what happens in our lives – we have a master plan, we make assumptions, we have hopes, but it doesn’t always play out the way we think it’s going to. I’ve learned this from my own personal experience of dealing with an ex-partner who almost died. The difference though is that in most relationship it goes back and forth – one partner needs the other partner for awhile and then the roles switch. With HD, it’s going to be lopsided and only get more lopsided as time goes on. It makes us caregivers sit up and take notice. I think we understand how important it is to build a strong network for ourselves because we’re going to need it on many levels as our lives progress.

    As far as getting Marian to engage in dialogue, this is an aspect of HD that I think is complex to deal with versus the physical aspects - and considerably less obvious. What do you do when the person doesn’t really respond to what you’re saying – and what you’re saying is kind of important to you? Emotions affect HD people in different ways – some are overly emotional and can’t regulate their emotion to an appropriate level given the situation. Other HD patients flat-line and express very little emotion. It’s a stark reality either way – the brain changes . . . and parts of your relationship can slip away when you least expect it.

  2. This is a painful and important discussion. Thank you both, Carol and Marian, for your honesty and vulnerability in these posts.

    Let's keep talking. Love to you both.

  3. I keep thinking about this. One thing that occurs me is that when Carol needs a hip replacement, a temporary care team could be formed to help out. I could create a new Lotsa Helping Hands website for that purpose. I imagine the members of Marian's care team would want to be members of Carol's, too, plus other friends.

    None of this addresses the issue of couple dialog and decision-making, but it does address one practical aspect of taking care of the caregiver.

  4. This sounds so hard--thanks for sharing your POV, Carol, hope the support group really helps. I can't help thinking of the housewarming party we had for my profoundly disabled son last month when he moved into his own place (with support staff). I felt so supported by the community of folks who came out. I think this great experience doesn't happen when you don't have to ask for help outside the family or relationship. So there's kind of an upside to that, though of course also a downside.

    The other part, about the changes in emotion--that's just hard and grief-making. Still--Marian, I feel we can still know when things are important to you by the fact that you write about them.

  5. I undertand exactly what you mean! I have learned so much how important friends and community are - from my point of view, it's my large extended family. I have been in this situation before through past experiences and I know how crucial it is to ask for help and have people in your life you can rely on and trust. I got over being "shy" about this stuff long ago - I'm not afraid to ask for help for myself or for my partner. :) One of the things that makes Marian and I such a good fit for each other is that we have this in common. We deeply value our friendships and have worked hard over the years at maintaining them. And that is definitely an upside!