Exhausted

I am exhausted. There are several reasons, I believe, for my lack of energy and no desire to do anything. Of course the first is FTD. Anyone who knows much of anything about FTD knows that it steals our energy and ambition and replaces it with exhaustion and apathy. Plus, researchers have found that those of us with FTD have "fragmented sleep." What that means is that we awaken numerous times through the night and then need to fall back asleep. Because of that, plus trips to the bathroom and all, we require a lot more sleep than those without FTD to feel rested.

I am not sure that all caregivers realize that. Not only does FTD limit our energy and desire to do things, we don't get enough sleep.  In fact, most of the research results that I found all mention the caregiver fatigue as well. I don't think anyone questions that fact at all. Personally, I now require around twelve hours of sleep to feel refreshed.

When people look at someone with FTD, they might see them sitting around all day, doing nothing. Their natural reaction is that we are lazy and, since we are probably in clothes that we have worn for several days and haven't showered, that we just don't care. To some extent we, or at least I, do care. Because I am so tired and have no desire to do anything, including bathe and get dressed, it probably looks like I don't give a damn about anything. 

This part of the equation I can accept. The part that confounds me is that I do care about what others think of me. I get hugely offended every time someone does that head to foot look-over, then either rolls their eyes or sniffs up into the air, and turns away. I don't sit or stand there and think, "Gosh darn, I wish had the energy and desire to get cleaned up and dress well all the time so everyone thinks well of me." What I am thinking is "Okay, what gives them the right to judge me? They don't have FTD and don't have a clue what it is like." Since I have no buffer, I am likely to say it out loud as well.

Now, from the caregiver point of view (and still to the FTD'ers point of as well), if one more person says to me, "You have to find someone to come in and help you." Or "Ask your family, ask at your church, ask your neighbors. You just have to be assertive, tell them you need help, don't ask."

I am extremely happy for those whom have success with that. I would try asking all those people, but they have all already disappeared from our lives. Between my dementia and his, no one has anything to do with us. 

I did have a close family member who at least would call every couple weeks and check on us. He would always end the call with, "Let us know if you need something." Then he started sending cards instead of calling. He always writes, "I know you are busy so I didn't want to bother you with a phone call." Let's see now? A friendly and concerned voice on the phone offering to help, even though he is hoping I don't say "yes" or a purchased piece of paper with a pretty picture on it?  Hmmmm...

I have seen church members purposely skip an aisle in the grocery store when they see me. I have probably already written about how one of the pillars of our church asked me what was wrong when he saw I was using a cane. I told him that I have FTD and he looked at me and said those dreaded words. "You know, if you think you have dementia, then you don't."  I almost didn't hear the last couple words because he had already turned and started walking away. I was diagnosed in 2011, stopped going to church in 2012 after I talked back to the pastor during his sermon. I only got a couple words out, but he heard them. Since then, he visited our home one time and he seemed extremely nervous. I guess being with two people with dementia really makes you liable to catch it.  I later found out that he only stopped by because the President of the Women's Group learned that he had not visited and confronted him as to why. So getting help from the church is not happening. 

Where I have found help is in hiring the woman, who has cleaned our house for the last three years, to be our part-time caregiver and companion. Without reading back through my previous blogs, I don't know if I have mentioned her before, but she is my savior. Even my husband likes having her around. Perhaps because she is in his age bracket. She is 80 and he is 76. She can convince him to do a lot more than I can. She reminds me to sit down and rest. Better yet, she is my reminder-in-charge. She does not let me forget what I need to do each day, whether it be phone calls or appointments. She never writes it down, she just remembers.  Hmmm... I sort of remember when I could remember. I am so thankful for this woman. She even found a young man for me to hire to spread mulch in our yard. At the risk of making her a sterotype, she knows him from Bingo.

At the same time I hired her, I hired an agency affiliated with our county's senior services. They were to start by sending a nurse every two weeks to fill our pill organizers and surreptitiously check out my husband's health. It's been six weeks, and they have not sent one yet. Yes, they remember. She calls the same nursing service each time and they say they don't have anyone, so she drops it. By that time, I was thinking I couldn't even hire help.

Last week, though, a social worker who was provided, without cost, by our insurance company called and she had found the perfect solution for us. She remembered meeting with us a couple times in the last three months or so and kept trying to come up with a solution and she did!  It felt so good to call the so-called "case manager" from senior services and tell her we no longer needed their services and tell her I expected to received the deposit of nearly $500 they demanded to use their services by the end of next week. I guess she finally took me seriously because the check showed up today.

I sure got off the subject of being so exhausted. Our caregiver/companion had shoulder replacement surgery 10 days ago. She came back to work 7 days ago. I was able to convince her to stay with us for a few days because I was so worried about her being at home alone. What tired me out was trying to do everything before she did and coaxing her to eat. While I went out to the grocery store during one of the days, she cleaned our kitchen and family room floors. I guess I should have tied her in the chair. She has gone home now and I ordered her to not show up here for three days. It helps that it is my sister who has been driving her around. 

The other component of my being exhausted is that since she is not here, all my husband's care has fallen back onto me. That is not a complaint. I love this man and will do anything I possibly can to keep him comfortable and happy. The last part, I admit, is that I don't know when to say "enough" and sit down to rest.