I admire every caregiver out there, especially those who are care partners to those with dementia. Of course I most closely relate to those dealing with FTD. I have been in their shoes. I have been in the caregiver role with family members who had FTD before me. Don't ask me which is more difficult. They are both horrible in their own ways.
My husband is my full-time caregiver. My daughter is my rock and keeps me sane. She knows me so well and is able to keep me on an even keel. She does not live with us and I think that is what makes her such a good care partner. We talk at length almost every day. We have done that since she first moved out of state somewhere around ten years ago. The interesting part of this is that when she first moved, it was me needing to stay in touch to make sure she was okay. Now, it is pretty much the opposite. She calls me to make sure that I am okay.
Because she does not see me, in person, more than a few times a year, she is the one that picks up on the differences in me from the prior visits. My husband, who see me constantly, does not always observe the changes because they can develop slowly. She is the one who will tell me when it is time to see the doctor. She and I have an awesome mother/daughter relationship, always have, always will. She is the one who calms me down when I am upset with my FTD symptoms, limitations and frustrations.
She is the one who can translate things between my husband and me. He and I do not always understand each other or speak the same language. He also is not quick to pick up when there are new things I need him to do for me. Of course, I am stubborn enough that I forget to ask him to do these things. She can be blunt and in my face about what I need to do and that I need to allow others to help me. I love this kid and could not survive this FTD journey without her!
Wow! I started this blog entry to talk about caregivers in general. I didn't see it leading into realizing how much I have come to depend on my daughter. It warms my heart that she is always there for me. It breaks my heart that our roles are needing to reverse.
What I started out wanting to talk about was sometimes needing to avoid caregivers. I visit an online support group for both caregivers and those with FTD. There are support groups for each of us alone but sometimes it is quite helpful for exchanges between both sides. When I read the concerns from the caregivers, it helps me realize what my husband is going through. Likewise, many times I am able to give caregivers an outlook from the other side. Having been on both sides, sometimes I am able to give a different prospective.
The bad part about frequenting the site that includes us both is that there is, naturally, a lot of complaining and venting by the caregivers. That is totally understandable and is a healthy thing for them to do. It is vital to be able to bounce things off others in the same boat and often times, it is only those people who can understand what you are going through. For someone with FTD, a lot of those things are downright difficult to hear. After hearing enough about situations involving people with FTD more advanced than my own, it can become quite depressing. To read things that makes it obvious how much the caregiver is resenting, sometimes almost hating, their loved one is heartbreaking. After enough, it leaves me feeling hopeless and depressed.
When this happens, I have to remind myself that I don't have to visit the site every day. I have had to avoid the joint site for as long as a month at a time. I am not blaming the caregivers. Like I said, they need outlets like this, just I rely so much on the online support group for only those with the disease that I visit most often. They have become my family and friends. I often refer to them as my lifeline. There are quite a few on the joint site that I feel I have a relationship with, but it can never be the same.
This week, I have reached that point that tells me to stay off the joint site for a while. When I start feeling like my life is hopeless and sometimes not worth living, I know this is what I need to do. Even though the caregivers come to feel the same way at times, it isn't the same. It seems to work the same way for the caregivers as they are often not receptive to the point of view from people with the disease. When you are not sleeping or having time or energy to live a life of your own, you don't want to hear why or what their loved one is feeling. Fortunately, they have closed support groups that are only for the caregivers as well.
I have, literally, forced my husband to join a local caregivers support group. It is not focused on FTD, but all dementias. Since so many of the frustrations are the same, it should help him. I have to keep reminding him, though, that the group is about him and his frustrations, not about me. It is a safe place where he can vent his feelings. Unfortunately, he is usually the only man attending. No surprise there, most men don't like to share feelings. A friend of ours goes to the monthly meetings with him so he won't feel so alone and she plans on doing this until he becomes comfortable with the group. I wish more men attended as I am sure the male perspective can be quite different.
It is tempting to ask my friend what he has talked about, but I resist. She wouldn't tell me anyway. Now, that is a good friend!
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