From Both Sides Now

I have loved Joni Mitchell's song "From Both Sides Now" for as long as I remember.  "...I've looked at clouds from both sides now; From up and down and still somehow, It's cloud's illusions I recall. I really don't know clouds at all."  

This song popped into my head while thinking about this blog. Of course, now, I can't get it out of there.

Earlier this afternoon, I was sitting here thinking I would just read through the support group, skip writing a blog this week and then take a nap. Then I read the post of a caregiver who was so exhausted that s/he sounded ready to give up. I realized that maybe, just maybe, I can make a difference in someone's once in a while by writing.

Just before getting on the computer, I gave my husband a sponge bath (anyone who has any tricks to get them to shower, please let me know), washed his hair, beard, face and the rest of his head. Thankfully he lets me do that about once a week. When he was all dry, he said he was going to take a nap. I should maybe remind everyone in case the entire population does not always read my blog. I have FTD, but my husband has dementia from Alzheimer's.

I invited him to sit down across from me and calmly talked to him. It was a miracle that I stayed calm. I pointed out to him, that he got up, ate his breakfast, took a nap, watched some auto racing on TV and fell asleep again. After all that exhaustion, he "allowed" me to wash his head. I pointed out to him that I got up, fixed his breakfast, grabbed a cup of coffee for myself, filled both of his pill boxes for the week, filled my reminder box for 2 weeks worth of pills, emptied the dishwasher, washed the kitchen counters and cleaned the stove top. Then, I washed his head. He wouldn't believe me, though, that my part of that was more tiring than his, because he had to stand over the sink while I did it.

I don't think I have to glorify the role of the caregiver as that is done often enough. Yes, it is probably the worst challenge that any of us will ever face. I manage to get away from the house once in a while, but that time is spent at doctor's appointments for myself or grocery shopping. Wow!  Such excitement and good times! I may have already written about this, but I told one of the Senior Van drivers that riding the van was my social life. He told me he really liked having me on his van and smiles when he sees my name on his schedule, but that I really, really need to get out more. That would be funny if it wasn't all so true.

I think that we, as caregivers, tend to beat ourselves up and think poorly of ourselves when we snap at our loved ones or are grumpy all day. Last time I checked, we are all human beings and are not perfect. Of course we should try our hardest and give it our utmost effort. Of course we should always treat our loved ones with respect and the best care we are capable of providing. The important word there is "capable". 

We need to be smart enough to walk away when we feel like lashing out or screaming at them. Of course our touches should always be gentle and reassuring. Yes, but if we are not endangering our loved one, sometimes we have to put ourselves first. When my husband is napping, I try to take at least 15 minutes to sit, relax and do some deep breathing exercises. If I didn't force myself to do that, I would keep on going full steam to try to get everything done.

Having FTD, obviously, compounds this issue. I was diagnosed with FTD before my husband was diagnosed with Alzheimer's. He was caring for me, pampering me. I was the one who could take a nap once in a while. Now, I push myself much too hard to make his life perfect and forget to take care of myself. Caregivers don't need to have FTD to forget that you can't help your loved one if you don't take care of yourself.

I actually got through to him about all I had already done prior to washing him and that I envied he was that he could go nap while I continued running the household. When he wakes from his nap, he probably won't remember, but at least I got that brief recognition of all that I do.

All well and good for the caregivers and they deserve all the credit in the world. But... those of us with the disease of FTD also deserve a whole lot of credit. We often go through our days totally confused and often in a fog. Sometimes we don't remember to brush our teeth or that we need to wash up or be washed up. Just like anyone else, we want to be comfortable and feel safe in our own environment. We suffer the indignity of poopy-pants. You will have to trust me on this, but it is easier for me to face this problem as my husband's caregiver than it is for me deal with when it is me who has done it. It is humiliating to have to ask someone to clean your butt. As horrible as the chore of cleaning up afterward, it is just as horrible and embarrassing for the loved one.

I will not go into the specifics of how I finally reassured my husband when he had an accident today. He was so upset that he had done it, embarrassed for himself and for me that I had to get up close and personal to his private areas. I will not tell you exactly what I said, but it had to do with the fact that I had been up close and personal with those areas for quite a few years now. By the way, the reason he had an accident was because he felt so anxious that he was causing me too much trouble. After being in a nursing home for six weeks last fall, he is so fearful he will have to go back. It took me long enough to get him out of that place, I'm not about to send him back, but he does not realize this. So we caregivers have to stop and think what we say to them. I did neither of us a service by getting through to him how much I was doing.

Those of us with dementia need our caregivers to offer us as much dignity as possible as well as the courtesy of having a space to ourselves where things are calm and quiet. I am actually very fortunate that my husband does nap so often. While he naps, I can come in here, to my quiet space, and recharge a little. Even if that time is spent on the computer "talking" to others in the support groups I participate in. I don't have any friends who stop by to visit anymore but these people are my friends and understand what I am dealing with.

Another thing I have worked out is that, since his easy chair and tv is right outside my bedroom, I am able to relax in the late evening. He is busy watching sports on tv, something I no longer have any interest in, even for my beloved Pittsburgh Pirates. So he sits there watching and I can relax in my room. Now, some evenings, I get called out because he can not figure out the remote control. That dilemma is a tough one because, with my FTD, I'm no better with it than he is. That one nearly always ends up in an argument. 

We don't always need to be right there together as long as we can tell our loved one is safe and comfortable. I can sit in my room, right where I can hear him if he is distressed, while I try to read, play on the computer or play games on my new Smartphone. I won't begin to get into that. I can play games, but couldn't figure out how to answer calls. My daughter was so sweet and didn't laugh when I called and asked her how to do it. I would bet it wasn't easy for her to hold that laugh in!

I know I have already said it too many times, but neither side of the dementia equation is easy. No matter which you are, it is overwhelming and often times seems impossible to cope. It is never about patient vs. caregiver or the other way around. Not in an individual situation nor with the two groups overall. Unfortunately, there are more situation than most people realize where the person with FTD is also the caregiver for another person with dementia or other disease.

I do not elaborate on being one with FTD and caring for someone with another horrid disease in order to receive sympathy. Instead, I elaborate on the situation to try to improve communication and understanding between patient and caregiver.