I've Fallen and I Can't Get Up

It has been an interesting week in our household. Along with our "new normal" activities and adventures, we just had to add some more. For one, I got my annual case of poison ivy. Not life threatening of course, but irritating enough to make everything else seem worse. Okay, I will admit, I was really, really grumpy.

It was also the dreaded week when I needed to take my husband, who has dementia from Alzheimer's Disease, to our doctor for a check up. This included an entourage because in addition to my husband and me not being able to drive and his refusal to take the senior van, our caregiver/companion is recovering from shoulder surgery and could not drive either and I really needed her along. Before his appointment, I was seeing the doctor's P.A. for my poison ivy because by then it was on my eye lids. There was no way he would have stayed calm in the waiting room with only my sister but we needed her to to drive us all. This ended up being way more stressful than it needed to be for various reasons. The actual doctor visit was fine because she understands and knows my husband so well and he really likes her. It was just too much for him.

I knew that as stressful as the visit became, that he would have trouble afterward. What I did not realize is that it would last for two days. He was more confused than he has ever been. He kept getting himself up and dressed in the middle of the night and ask for his breakfast and morning pills. He was imagining strange events and kept insisting that there were other people here. I don't think I will ever figure out who was giving out goldfish and, no, I could not tell him if they were doing it safely. It took a while to get him calm after that one.

We finally got through the couple days of this added stress by keeping things calm and on schedule for him. We are not quite back to our normal, but we are getting there. 

At least it was until early morning when he decided he wanted to climb into my bed for a while. I had no problem with that, but I learned that a memory foam mattress is not the best bed to climb into when you are far from strong and nimble. He sat on the bed and tried to get his legs (not much strength there) up onto the bed, the memory foam had dipped from his weight on it and he slid right off.

My first instinct was to not let his head hit the marble top on my bedside table and I was successful in doing that. Now, though, he was wedged into a small space, less than 3' x 5', and there was going to be no way for him to get himself up. I won't go through all the details, but if it had been filmed, it would be a hit on YouTube. It wasn't easy for him to understand my instructions, but we did get him up safely. I knew enough to not try to lift him, especially by the arms, because that action can actually end in broken arms or arms pulled of their socket. Instead, I used my tried and true method of getting myself up after a fall. 

When asked how to get up once you have fallen, I usually give the advice of making sure you are not injured, if so call 911. If not, roll onto your tummy and crawl to a sturdy chair or other piece of sturdy furniture. I don't know how I learned to do that, most likely from falling so often.  Today, while trying to learn if there was a better or esier way to get my husband up from a fall, I found a great explanation of the technique I use.  I thought this might benefit everyone, so here is a link:  https://www.stayonyourfeet.com.au/over60/what-if-i-do-fall/get-up-off-the-floor/  They explain it a lot better than I can.

Also, here is one for how you can help someone else up if they need assistance.  It is the same basic procedure, but with some help.  https://www.youtube.com/watch?v=10jR0zjl19Y

It is essential in either case, to do an inventory of the body to check for injuries before using this technique for yourself or when helping someone else. If there are injuries, call 911 for assistance if at all possible. 

Please bear in mind, through all of this, that while extremely effective, this technique to get yourself up from the floor after a fall can be quite embarrassing in the middle of a CVS store. Thank goodness I was not too far from the pharmacy where I knew some sturdy chairs were available. Needless to say, I now shop at CVS online.

FTD Is Never Ending

During this past week, a fellow FTD'er asked the question as to whether we just get sick and tired of FTD.  I never really thought of it that way before. I hope she does not mind me using her wise question as the theme of this blog. 

Short answer?  YES!  

How can you not get sick and tired of it. Number one, we have it and bravely deal with the symptoms everyday. Secondly, I at least, get tired of it occupying every minute, every second of every day. It never goes away. It does not get better. So we deal with it. Thirdly, I get so tired of having to explain the disease to everyone. It is usually an exercise in futility anyway, because I can almost hear them thinking "Oh, it must be Alzheimer's" or "but she doesn't look sick.)

Yes, we deal with the symptoms everyday as bravely as we can. Some days, I must admit, these symptoms defeat me and I am sure other FTD'ers as well. This is especially difficult when new symptoms appear.

This week, an old symptom came out to play. When I was first diagnosed, it was FTD w/MND (motor neuron disease, related to ALS). The decision to include MND with the diagnosis was made based on symptoms. I could not take more than a couple steps without stumbling. The way they tested it was to have me walk, in a straight line, down a hallway. There was a handrail along the wall and I had to grab on at least every three steps. There were other tests they did, but that one explained to me why other people, when following behind me, were assuming I was drunk. I was ready to make a sign for my back that said "I'm not drunk, I have FTD."

These symptoms never went away, but they never got noticeably worse either... until last week. I either lose my balance or one of my legs, usually the left one, does not get the message from the brain to move. I don't have a way to tell you how many aches and pains this is causing. My hips hurt, my calves hurt, my waist and abs hurt. These pains are being caused by me contorting myself to keep from falling. Yes, I know I should use a walker. It is just that using one in my home is awkward and almost as frustrating as falling. We have a narrow hallway and doorways. We also have very tight corners.

I guess this is an example, almost, of remission. Only in this case, not the disease, just the symptoms of another one. With these movement issues, it was really easy to ignore them. There is no way to ignore them now, especially when I am lying on the floor trying to get up. With my husband's Alzheimer's, he is of no help. I am trying to remember to keep my cell phone on me at all times. I must give a huge thanks to my daughter for "forcing" me to get a smart phone a couple months ago. It gives me security to know I can call for help if the need arises.

Now, for the second point of not being able to escape from it. For a couple years, I felt guilty because every time a caregiver would talk about getting or needing a "respite," I would feel angry and resentful. Calm down now, I am not saying that caregivers don't deserve/need a break from that role. It was simply like rubbing salt in a would because, it was possible, albeit quite difficult, for the caregivers to step away for a bit.  Those of us with FTD do not have any such option. There is no way to get away from the symptoms of the disease. They are always with us, making our lives difficult and sometimes painful, full of the frustration of being limited in what we can do and realizing that it will only get worse. I finally got over the feelings of anger and resentfulness, because with now being a caregiver as well, I couldn't get away anyway.

The other thing that does not go away is the realization that we are causing difficulties for everyone around us. Trust me, there is not one of us who wants to inconvenience their loved ones. None of us are happy that we are unable to work anymore and that we can get Social Security Disability payments. Trust me, those payments don't often come even close to what we were previously able to earn. There is also the stigma of being fired for many of us. There is no question that FTD affects those with higher intelligence more often than not. Therefore, most of us were making a pretty decent income. After FTD we sit around feeling useless because we cannot financially contribute or, in many cases, cannot even do chores to absorb some of that burden.

This fact is also difficult for the caregivers. Here they are, exhausted, maybe even already worked a full day at their job, then need to come home and do everything else... cook, clean, laundry, taking out the trash. You know, all those thankless jobs. On the other hand, we FTD'ers have to sit there and watch the caregivers wear themselves out and yet we still have to ask even more things of them.

I don't have to even talk about the third thing that I am so tired of dealing with. I don't think there is anyone reading my blog that does not understand this one. How many times have each of us been asked "what is FTD"? I find myself shaking my head before I start to explain because I know, 9 out of 10 of them are going to shake their head and walk away thinking either "they don't have dementia or they wouldn't be able to know they have it" or "they don't look sick."

I was chatting on Facebook with an old friend (we have been friends for 50 years) and Facebook has allowed us to get in touch once more. I asked him if he had seen the "Sixty Minutes" piece on FTD. He had not, so I sent him the links. I knew he had watched all three segments when a friend asked, as a reply to one of our posts about it, "What is FTD?" My friend typed, "It is a form of dementia, the worst kind." He got it! If only others would take the time and effort to even just Google FTD. I get very tired of trying to explain it to people who have no clue.

So, in answer to my friend's question, YES, I do get tired of FTD and all the energy to deal with it, explaining it and coping with the symptoms.  I will admit that I even get tired of advocating for the disease, but I will never stop. I will also not stop all of those things I mentioned, especially educating others. It is something that needs to be done. It is also something that rewards me by being able to feel useful and feeling that I just might be helping others. (Not looking for complements, it is just the truth."

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.

What a Day for a Daydream...

This blog is going to be about how FTD robs us of the ability to daydream and remember some of our past.  But first, I've got to write about a couple other things. If you don't care about my personal life, just skip ahead two paragraphs.

First of all... Rushing around is apparently a bad idea for those with FTD, at least for this person with FTD.  I received a call from dispatch for the senior van that my van was going to be 10 minutes early. So, I ran around like an idiot. Made sure my husband was in place with his caregiver. I hustled across the garage floor, leading to my flying across the garage floor. I have many bumps and bruises. The only thing that has caused an issue is my knee which remains swollen.  Two lessons learned:  1. This FTD'er should not try to hurry. 2. Using a cane does not keep you from falling when you are doing things you know you shouldn't. What I haven't figured out yet is how does one manage to land on both knees, hit the front of your head on the concrete floor, then land hard on your back and shoulder? I didn't drop my cane though! 

The next thing is actually a blessing. My husband's caregiver, also our friend, had to have shoulder replacement surgery. I was feeling guilty that I could not go to her house and help her out. Her son only stayed until the day after surgery. This wonder of a woman never asks for help, so I was thrilled when she called and took me up on my offer for her to stay with us until she was mobile and comfortable enough to stay by herself. So, here we are, one with FTD, one with Alzheimer's and one who can't do much of anything, all taking care of each other. Believe it or not this is working really well. Who would have guessed it? Just three peas in a pod.

Thank you for bearing through my personal tales. 

Last week, during a support group meeting, another FTD'er mentioned that it is impossible for us to daydream as well as not easily remembering the past. This was an eye-opening bit of information to me.  Of course, I had to research the subject, and she was definitely correct.

Daydreaming, it turns out, is an important part of life. It is during daydreaming that we often have that "why didn't I think of that before" moment leading to solving a problem we had been struggling with. What happens is that our mind is wandering, opening it to envision answers to problems that we were previously unable to do.  Daydreaming also provides part of our individual identity.

Yes, researchers have found that this ability to daydream, as well as to remember past events, can reduce our sense of identity. When the ability of the brain to remember the past or predict what might be in our future is stolen, it seems to make us question just who we are, figuratively, not literally.

Think about what you do when you are bored. Most likely, your mind wanders and your imagination kicks in and you find yourself daydreaming.  What would happen if you could not sit and daydream?  You would be stuck in that moment. You can't remember many things from your past and can not imagine what you might do in the future. If this is true. and according to three resources I found, it is, then hink about it. If you are limited in what you can do due to your FTD and you cannot even let your mind wander into a daydream to ease your boredom, or imagine how to do something, how would you occupy your mind?

Those of us with FTD tend to be, dare I say, stubborn?  If you cannot visualize an alternative, you would want things to be the way they have always been or done. That could also be why we tend to need routines in our life, because we cannot imagine doing it any other way. 

Does this affect everyone with dementia? This problem is most prevalent among those with FTD. It does not seem to affect those with Alzheimer's Disease, certainly not to the extent it does with FTD.

I wish I had suggestions on how to "fix" this problem but I could not find anything except that over-used suggestion "Try to keep the mind busy." Wait, what you just told me is that I cannot think about new ideas. How am I supposed to learn how to do something new? Next, are they going to suggest we eat more green vegetables? Or to keep busy by doing crossword puzzles? I apologize for being cynical here, but I am tired of hearing the same generalized advice that is given to everyone. 

My bottom line here:  

Caregivers, if you know these facts, hopefully, you will be able to understand your FTD'er a bit better.

To those of us with FTD, my advice is to stop beating yourself up because you cannot figure out how to do new things, cannot remember how to do the things you used to do, need a list or post-it note to remind yourself to do things or to not do things, do not realize when you see something that needs done but don't realize you should do something about it or get agitated because there is something new in the room. It's not your fault that your brain can't do it! 

I am guessing this is why I won't let anyone move anything in my house. I want things where they have always been and can not imagine why anyone would want to move them since they are fine where they are. I realized, as soon as my friend on the support group said we cannot daydream, that I don't. If I am sitting around with nothing to do, I do what I call "zoning out". Not exactly keeping my mind busy...