Actually, I think the title is incorrect because you don’t live through LBD. You die from it or from complications of it. We, his caregivers, have to live through it but right now I’m asking myself how? How do we live through this and come out healthy, happy and ‘okay’ on the other side. Actually, that isn’t quite correct either because what I’m REALLY wondering is how does Mom do this? I find it hard. I find it tiring. I find it hurtful. I find it frustrating. I find it confusing. I find it depressing. I find it exhausting. I find it overwhelming. If I find it all these things. What must my mom be going through? I don’t know how you watch someone who’s been constantly by your side for 49 years slowly, painfully die? Slowly lose the functions of brain and body which you’ve relied on for half a century and which everyone else takes for granted? How do you switch from spouse to caregiver? Who takes care of the caregiver? When is there time for the caregiver? I find all this very troubling. It’s hard to see a problem and have no answers to it. The dynamics of a 50 year relationship are complex and interesting indeed. My parents didn’t stay married because ‘it was the right thing to do’. They stayed married for the same reason they got married: they couldn’t imagine living without the love and companionship of the other. They’re both totally tied to the other in ways that are impossible to see or understand. The shifts that are happening are gut-wrenching to witness. He is becoming so very dependent on her-for everything, while she, by necessity, is having to become independent of him. I hear ‘arguments’ for different ways of caring for the caregiver. This way is better than that way. No, that way is better than the other. It all seems so simple. You just need to do this, or do that, or do the other. But it isn’t so simple or easy. Nothing about any of this is simple or easy. There isn’t any magic pill, not one to stop his legs running or one to stop his body spasms or to keep his mental clarity. There is no magic pill to easily care for him either. I’m watching mom doing the absolute best she can but the question I’m beginning to ask myself is how long can she DO this? My help is a drop in the ocean. I’m not negating it’s importance. I totally know it’s vitally important. I just don’t think it’s enough and I can’t figure out how to do more or how anyone else could do anything more. Some things can’t be done by just anyone and some times there really is nothing to ‘do’. It’s just her being there and him knowing that she is. One aspect is the constant knowing that things are bad and they’re not going to get any better. It’s wearing to know that nothing you do brings help or comfort. It’s wearing to watch as the days and nights tick by without any sleep for him. I don’t live with dad and still his troubles invade my dreams, interrupting my sleep. I wake with a jolt. Is he alright? Of course he’s not alright, he’s never alright. Is it really horrible tonight? What if he dies? And then I ask myself and this would be bad why? I’ll feel relief. I’ll feel thankfulness. I’ll feel loss… Such loss. If Dad could chose, he states he’d definitely chose to go now. There’s one thing I totally believe. I 100% believe that his future is bright. I believe the moment his earthly life stops, his eternal life will start and it will be more wonderful than anything he’s experienced in this life by far. For that, I can hardly wait. I wish he could skip all this suffering and get right to the good part!
It’s been awhile since I last blogged. The above was written in mid-February. At the time, these struggles felt too ‘personal’ to share. It’s a thing I’ve got to get over if I ever want to be able to encourage those who are walking through similar circumstances and feeling so alone. Also, for some time it felt like there just wasn’t anything good to say so it’d be better to say nothing at all. You’ve heard the saying…if you don’t have anything good to say, don’t say anything at all.
In the last few weeks Dad has spent less time with me and more time outside enjoying the spring weather or just being close to mom. He likes less and less to be away from her. Right now there is no crisis. He isn’t sleeping well at night but he hasn’t done that in years and years so there’s nothing ‘new’ there. It’s spring here so the fear that he may wander out at night, without being properly dressed, is greatly reduced. Too, he has less strength to get out and about and he knows this. He can’t just put on his coat and go do an all day project. He gets easily confused. He can’t figure out things that use to take no figuring at all. These things frustrate him. They depress him. They make him angry.
One of the things I have the hardest time getting use to is not being able to ‘believe’ what he says. He tells me about a situation and it all sounds so believable. Like, Mom turned her taxes in and they told her they’d do them and then they called and told her they can’t. Oh, why? They don’t have time. That’s weird but believable. He’s angry. He doesn’t want her to use them again. And then I ask mom about it. No, they’re doing them, they just can’t do them until next week. Oh. So there isn’t a problem? No, no problem. Wow. How does a delay get turned into a refusal? I must remember this. I can have a perfectly intelligent conversation with my dad but that still doesn’t mean the information I’m receiving is correct. I must remember this…I must remember this. It is so far out of my life experiences with this man. It is painful. Like the pain of watching his ‘filter’ slip away. Sometimes the most inappropriate things come out of his mouth. Oh boy, you didn’t just say that…did you? What in the world? Why does this happen? Give me back my dad! What have you done with him? And then…here he is again. Thank God! I hope he can stay awhile but that’s the thing with ‘Lewy’. You never know just when he’s going to show up or just how long he’s going to stay.