A Personal Tale of Patient vs. Caregiver

For the last few weeks, I have been forced to wear my caregiver hat even more than normal. I wish this hat fit me better. Believe me, having FTD and caring for someone else with dementia is extremely difficult.

During the past couple weeks, I have had to make a couple very difficult financial decisions. This sort of thing is something my husband and I would discuss and come to a mutual decision. Now, I need to make these decisions alone and it frightens me. I often made bad financial decisions, even before FTD, often deferring to my husband's suggestions. Now, here I am, needing to do it alone and it confuses me and leaves me worn out. I had already taken over our day to day financial issues when I realized bills were not being paid. I must say I was lucky and he did not protest at all. In fact, he was very relieved when I offered to do it and admitted that he had been struggling. That was one time that my care giving knowledge did kick in. I offered to do it. I did not say that he could not do it anymore. The sad part is that seven years ago, I had turned this responsibility over to him because it confused me so much.

The more major financial decisions are very difficult, partly because I understand the limitations that FTD causes for me. Fortunately, I took my own advice. I am constantly suggesting to those with FTD and care partners to consult with an elder care attorney. I took my own advice. He is redoing all my official documents: will, living will, financial power of attorney and healthcare power of attorney. We had already, a few years ago, met with this same attorney and he prepared all the same documents for us. The problem is that we both made each other responsible for everything, healthcare decisions, financial decisions and even funeral instructions. It is so important for the care partner to keep up with these type of things.

I mentioned that I was not always the best with financial decisions and have made some very bad ones. Because of that, I have decided that I am going to allow the elder care attorney to control most of our savings. Wow! That's a lot of trust to give someone. I know I cannot trust myself to make good financial decisions and do not want to put that burden on a family member so this was my choice.

Of course, financial decisions are not the only thing that prevents me from being the caregiver I would like to be. I do remember a lot of things from when I was the caregiver for previous family members and I try to use things that worked with them. I do a lot of taking deep breaths before I react and do a lot of retreating into my quiet room to calm myself down for a few minutes. I also, though, sometimes do it right.

My husband, like many people with dementia, no longer wants to shower. This is a man who never skipped a day of taking a lengthy shower. I remind myself that this is okay and not smelling so fresh is not going to kill him... or me. The day before I intend to get him into the shower, in the afternoon when he is most cognizant, I tell him that the next day he needs to shower. The actual shower day, again in the afternoon when he is most aware, I tell him it is time to shower. He still complains, but he does it without resisting. That is at least one thing I get right.

To avoid taking my husband to the grocery store, my sister takes me most Mondays. I never go without a list and it takes me several hours to put it together. All week, I do jot down items as we run out. But on Sundays or Monday mornings, I spend at least two hours putting the list together. Then, in order to keep the shopping trip as short as possible, I rewrite the list in the order of the store. This has really been working well for us and has been making the shopping trips somewhat less stressful.

Unfortunately, the store doesn't keep my FTD difficulties in mind. They are constantly moving things around, but it's been a couple years since they did a major reorganization. When we went to the store last week, I found a disorganized mess. I could have stopped, checked out and gone to a different store but that would not have worked either since being in an unfamiliar store is just as likely to break me. We stuck it out but half-way through the store, I yelled out "Why do they have to move things? I cannot handle moving things!"  I did get a lot of stares, but my sister just took it in stride. Grocery shopping is another one of the chores my husband has taken over after my diagnosis that I had to once again start doing it myself.

I also still prepare all our dinners. Fortunately, my husband prefers to graze all day rather than have a true breakfast or lunch, so it is just dinner that I need to prepare. When I cook, I try to make things that we can have for at least two days to cut down on the need to cook every day. Cooking is difficult for me on some days. After I was diagnosed with FTD, he would notice when I was stressed and would often offer to go pick up dinner or he would help me cook something easy. Not only can he no longer drive out to get something, he no longer notices when I am stressed or worn out. If he does notice, he asks me why I get that way. 

Again, these are the things I do that are on the positive side as a caregiver. Unfortunately, the anger and frustration of FTD affect me, even in my caregiver role. I lose patience more often than I would like to admit. As always, if I think it, I am most likely to speak it. Yes, I yell even though I know it will do nothing but make situation worse, but it is not something I can always control. The problem is, these are the first things that FTD caused me to do long before he developed dementia. If I couldn't control it before all the added stress of being a caregiver, I sure cannot control it now.

I must add that I do get angry and frustrated that he has a 24/7 caregiver in me and I don't have anyone. I know I can call my sister for most anything, any time, but I try to limit how often I call on her. I do call her when I feel I am at my wit's end. My daughter also calls me every evening to check in on what is going on. She can always get me to laugh about it which helps enormously. I went from having a husband who was always trying to do everything for me, to his not being able to do anything. 

I often end up totally and completely exhausted with no desire to do anything. I was that way when I only had my own FTD to deal with. Now, it is multiplied several times over. I will bet that you can tell that today is one of those days. When you combine the days that FTD leaves me without energy to do anything with a day of needing to do everything, it ends up not looking pretty.

This has ended up being more of a look into our personal lives than I had originally intended. I hope I achieved my goal of showing that both sides of the FTD picture can be terrifyingly difficult to handle. This is what I tried to do in last week's blog as well, though some caregivers did not see what I was trying to say. 

Even from the beginning of my adventure with FTD, I often said that I could not begin to decide which was worse... being the one with the disease or being the one caring for that person. I knew this going into my FTD challenge from being the caregiver to my grandmother, later my mom and then my aunt before being diagnosed myself. One bit of irony is that I was finally given the diagnosis of FTD right around the time my aunt died. It seems my family just cannot get away from this disease.

We Are Not So Different After All

Some days there is just no coming up with a subject to blog about. This usually happens after several days of being frustrated with the limitations FTD brings into my life. 

One frustration that comes up repeatedly is a vast difference between the caregiver view of FTD and the view of the actual person who has FTD. These two viewpoints are not always vastly different but other times it can be a huge chasm.

Part of the problem lies in limited places that someone with FTD can express their opinion or explain what is happening in their lives. It would be wonderful if there was an open forum where both sides could express their viewpoint on the same subjects. Don't get me wrong, there are support sites that are open to both caregivers and those with the disease. Unfortunately, in my experience, these sites are slanted in favor of the caregiver. It saddens me to say that. In an ideal world, the view of both sides should be the same.

During this past week, I noticed a post on two of the support groups open to both. It was titled "8 Warning Signs That You Are Emotionally and Mentally Exhausted."  (The link to the entire article is http://runwonder.com/relationships/8-warning-signs-that-you-are-emotionally-and-mentally-exhausted.html if you want to read the entire length. 

The 8 items were:  you are easily irritated; your motivation levels are dropping; you are experiencing anxiety attacks more than usual; you have trouble sleeping; meaningless things upset you; you feel dizzy and nauseous; you feel like crying for no reason; and, you start to feel detached.

I found this information to be quite interesting because, even though it was posted and commented on by caregivers, I realized that it pertained to all of us... those of us with FTD as well as the caregivers. We are really not all that different. We are all extremely frustrated by this disease.Those of us with the disease are frustrated by not being able to comprehend or do the things we used to do almost without thinking, things that just came naturally. 

The first thing that came into my mind was the television remote control. I sit and stare at that dreaded device for several minutes before I can figure out how to tell it to do what I need it to. I often end up throwing it down or even across the room. When I do something like that, my husband gets angry and frustrated because he sees it as me acting in anger. He has not seen me struggling with the remote, all he knows is that I threw a fit and threw something which frustrates him to no end. This is only one small example as our days are filled with them.

Those of us with FTD are faced with difficult decisions that were not even conscious decisions prior to our disease. What to wear, when to brush our teeth, what to eat are just a tiny few. Everything we do throughout the day needs to be a conscious thought and can turn into total frustration. What do we do then? Usually, lash out in anger just as I do with the remote. Some days, it does not take long at all for us to give up on trying to do things. The other reaction is to panic because I cannot get something accomplished. Panic can lead to more anger and frustration and these just feed on themselves.

I really can only speak for myself, but I run away from the problem. Fortunately, most often I can now recognize when I am getting out of control. My world starts spinning, my mind cannot stop and, lately, my entire world goes black. I am so stressed that I cannot focus enough to see or hear anything around me. This is when I know to retreat to a quiet and dark place. If I don't have this kind of place to go to, I am liable to scream at people or just wrap my arms around myself and retreat from the world and everyone around me.

At home, my quiet space is what used to be just my bedroom. I have converted it into an all purpose room of sorts. One corner is my office and one corner is my comfort spot and the rest is bedroom. If I am fortunate enough to be near my room when frustrations get out of control like this, that is where I go. If I am lucky, I can fall asleep, but most times I am so wound up that I will just curl up into a fetal position and rock myself and sleep is impossible. If someone attempts to come in and try to calm me, it makes everything worse. I don't want anything to do with anyone or anything.

My daughter and my sister know how to deal with me when I reach that point and just leave me alone long enough to calm down. My husband? Not so much. I cannot fault him for that because his Alzheimer's Disease makes it very difficult for him to understand. It is not unusual for him to keep trying to come into my room to "talk about" it. That is the opposite of what I need. 

So, if you follow along with this tale of struggling with the remote control, you just might see why I insist that the list of eight things can totally apply to someone with FTD. Now, look at the list again and compare those warning signs to how a caregiver might react to the same situation. Those warning signs are spot on once again. So, how different are we anyway?

This situation really did happen in my house just last week. I was actually lucky. If we had been out somewhere, at the store, at someone else's home or anywhere but home, it could have been a huge event. There would have been even more anger, frustration and stress on both sides. 

This is why I say that we have more in common than either side of the equation realizes. We need more conversation and understanding. In the support groups that have both sides represented, it is possible that a different person with FTD could explain to the caregiver what probably happened. It could work the other way as well, another caregiver could explain to someone with FTD why our caregiver reacted the way they did.

What it comes down to is that we are ALL in this together. In my opinion at least, we need more open communication between the two sides. I cannot tell you how many people with FTD have told me that they don't visit these joint support group sites anymore because it is just too painful to read what caregivers think of their "loved" one for whom they are caring. 

There are conferences that are just for caregivers. I don't know of any that are just for those of us with FTD. That, of course, would be problematic since we often need a caregiver with us but the principal is the same. There are respite programs for the caregivers. Those with FTD get no respite from the disease. 

Please understand that I do understand what the caregiver deals with. I have explained numerous times that I was a caregiver for my grandmother, mother and aunt before I showed my own signs of the disease. I am also the caregiver for my husband. Yes, it is difficult when we are both each other's caregiver, but we have been managing so far, with a lot of help from my family. So while I do not know the difficulties in every case of FTD, since no two are the same, I have a pretty darned good idea.

My point here is that I am not trying to pick on or criticize the caregivers. My intent with this blog is to point out that both sides are dealing with the same issues. One side is not any easier than the other. 

As I said, we are all in this together. We need to be more understanding of each other. We need to communicate more openly with each other and recognize that neither one of us has an easy row to hoe. There are many weeds everywhere, throwing up obstacles all over the place, all the time. We just need to make sure one side doesn't destroy the other.

The Elephant In the Room

I think it is past time for me to address the elephant in the room. This is one thing that most of us are reluctant to talk about normally and even more so when dementia is involved. This elephant is sex. If discussing sex issues offends you, please stop here.

We are all sexual beings and learn, even as small children, that boys and girls are different. This progresses eventually into interest in sex. As we mature, we learn how and when to channel the sexual drive. Society and its norms teach us what is appropriate and what is not, as well as when it is appropriate and not.

Surprisingly, I found that there are a lot of studies out there regarding sexuality and dementia. When you have FTD, social filters are absent or greatly diminished. Studies vary and I found sources suggesting that sexual issues develop for anywhere in 7% to 25% of diagnosed cases. I suspect it is higher than that because it is a subject that many are squeamish about discussing.

What is interesting is that sexual issues run the complete gambit. The person with FTD may want nothing to do with sex or go in the opposite direction of thinking about sex nearly all the time. It should be of no surprise that the difference may lie in which area of the brain is being affected.

Those who have little or absolutely no sexual desire may relate to testosterone levels. Sexual appetite is controlled by the amount of testosterone in both men and women. These levels tend to decrease as we age, In dementia they can be reduced even more as more and more brain cells are destroyed. the lower the testosterone levels may become. In addition, many of the prescription medications that are often prescribed to control symptoms of FTD can affect the libido in either direction. Some can raise the desire and others can eliminate it.

Most of those with hypersexuality tend to be those diagnosed with bvFTD. Researchers at the University of California in San Francisco (UCSF) conducted a study to determine if hypersexual behavior is related to other "reward seeking" behaviors. This would include overeating and the craving for sweets or alcohol. They found that in people with FTD, there is a loss of cells in the putamen and pallidum, which are areas of the brain located on the right side of the brain (temporal lobe). This area of the brain is known to be responsible for reward seeking behaviors and the link to it includes hypersexuality. 

This leaves little doubt that hypersexuality is caused by FTD and an increased interest in sexual things can be as strong as our craving for sweets and is very difficult, if not impossible, to be controlled by the person with FTD. As much as I hate the expression, in hypersexuality as well as most FTD symptoms, it is the disease controlling it, not the person with the disease.

Again, I will lead with the easier subject to address. The lack of sexual interest in someone with FTD affects the loved one, who is most likely the caregiver, more than themselves. If sexual relations were a regular part of their life together, this can leave a huge void in their relationship. Without this loving connection, the caregiver can feel unloved and frustrated. The result may be the same for the person with FTD because they remember what their sexual interest was prior to FTD. They may miss that assurance of love and comfort.

Hypersexuality is more complex. It can manifest in many different behaviors. Some have what are considered normal interests in sex but they fail to recognize when talking about it or acting on it are appropriate. Others develop obsessive desires and the thoughts of sex are nearly constant. One long-time advocate for FTD summed it up by saying "I now have the libido of a sixteen year old and the mouth of a drunken sailor."  

One of the issues that arises from hypersexuality is that at the same time that the one with FTD has this intense craving for all things sexual, they have also become undesirable to their loved one/caregiver. This does not mean that their love is no longer there but the desire for intimacy is gone. In some cases, unfortunately, it does mean that the caregiver does not have a romantic love of the one with FTD, not to say they don't still love them, it is just in more of a companionship way. I have witnessed this in many cases and it makes me feel extremely sad. Just when the person with FTD needs intimacy, it is denied and becomes just one more frustration of dealing with the disease. Everyone needs to feel loved.

Pornography viewing often becomes an issue. It can become compulsive for someone with bvFTD. In some cases, that will be the only way their hypersexuality manifests itself. In that case, denying access to the internet, etc. may be self-defeating. If their compulsion is being controlled by this and not causing other issues, it might be best to let it continue even if you find it morally offensive.

Another issue is often making inappropriate sexual comments at inappropriate times. Trying to distract them may not be successful and may cause even more embarrassment. This is a good time to use the Awareness Cards that are available the AFTD. These can be printed from their website (www.theaftd.org). Then, try to steer them away from the situation.

Yet another problem with hypersexuality can be compulsive masturbation. One of the best ways to handle this is to remind them that this is something that is done in privacy and steer them to their own bedroom. While it may involve the "ewwww" factor, if it is controlled to stay in privacy, it can be a safe outlet for their sexual desires. Again, if it is done in an inappropriate place, try handing an Awareness Card to those witnessing the event and redirect the FTDer away, reminding that it is done in privacy and in their own room.

When it becomes an extreme problem, many dress their loved one in jumpsuits.  There are even ones that are not open in the front. These can also help prevent disrobing, often another consequence of FTD. One problem with the jumpsuits is that it can make toileting a difficult process. 

Above all, to the caregivers, I beg you to not take these issues personally (yes, I know it is difficult) and do not belittle, humiliate or criticize the one with FTD. These are not behaviors that they can consciously control. 

Most people tend to think of hypersexual activities as problems for men only. This is not even close to the truth. The issues affect both sexes. They may manifest themselves in somewhat different ways. I believe that the issues, when in a woman, are not discussed as openly as they are when it is about a man.

One caution I must include about masturbation. It can also be a sign of vaginal and/or urinary tract infections. It is best to rule out these possibilities. 

As always, sexuality issues should be discussed with the doctor no matter how awkward.  It needs to be determined if it is actually a side effect of a medication or infection. Once those are ruled out and if redirection and distraction is not the solution, there are medication that can control the hypersexuality.

Answering Questions Again

Today, I want to try to answer two questions I hear frequently. These are not new questions and are ones I have tried before to get the answers out there, but I still keep getting asked. So bear with me while I try again.

The first is one that my sister and brother-in-law are always asking, "Why didn't you call us, we would have done that for you?" In a different form, caregivers ask, "Why do they insist on doing themselves and then just make a mess of it?" A perfect example of this presented itself to me a few days ago.

After getting out of bed one rainy day, I popped a coffee pod in the Keurig to enjoy a hot cup when I got back from getting the newspaper and mail.  It didn't work that way. When I stepped into the laundry room, I was met with a nearly audible "Squissshhh." We  had flash floods overnight, again. Our trusty sump pump tried, but could not keep up with the water trying to invade the house, causing it to come up from the floor drains there, as well as in the garage.

It quickly became overwhelming, but I kept saying to myself, "One thing at a time!" It wasn't time to panic. The water was only out of the drains by about three feet. That's in radius, not depth! I started lifting things off the floor. I started with cardboard boxes and anything sitting in water, then continued on to everything else. That was good, logical thinking for someone with FTD, I must say. I then started mopping up. It was only about three hours of work, leaving me tired but pretty darned good about myself that I did it.

The exhaustion did not come from the physical exertion, it was more the strain on the brain. So, why did I do it all myself?  I could have awakened my husband to help or called my sister, but I believe that would have made it worse. My brain was already strained from trying to attack the problem in a logical manner: get things to safety, find the mop, bucket, towels, rags and anything else that could sop up the water. I turned the dehumidifier on to Turbo mode, set up a couple fans. I then attacked getting the water out. I did it and was feeling pretty good that I had done it.

I could have called my sister and had them come over with his wet vac and to help move things. I knew they wouldn't mind being drug out of bed and driving here. The problem with that is that I would have to coordinate things. I would need to think of what I should do, what everyone else could do. My brain would not have been able to do that. Also, the laundry room is not a large space, maybe 12x20 feet. Adding that many people into the room would have me feeling trapped.

That is why I had to do it myself. Did I do it exactly right? Probably not. Throwing everything made out of fabric that I could put my hands on in to soak up the water and then dragging them outside to dry out was not the best decision. Perhaps someone else might have thought to put them in the washing machine that was sitting right there and put them through the spin cycle. Perhaps using a wet vac would have been more efficient. Yes, but! I would have been a basket case that would have caused a set back for at least a couple days.

By doing it myself, I avoided a breakdown and ended up feeling pretty darned proud of myself for getting it done. This is an extreme example, but the premise is the same for anything. Some times, allowing the person with FTD to do something themselves might cause additional work for the caregiver, but is much preferable over an argument about it, one that could get nasty and lead to hurt feelings on both sides. 

I am not saying to let someone with FTD do everything themselves, but when it appears to be possible for them to do it, why not let them. When a caregiver, family member or friend says "I could have helped you, you should have called," let it go at that. Don't keep repeating it or arguing that they should have called or asked you to do it. When someone does that to me, what I hear is "You are not capable of doing it yourself." Don't you think it would be better to say something like "You could have called me for help, but it sure looks like you got it done."

In other situations, if you realize that the FTD'er wants to do something on their own, as long as it doesn't present a serious danger, why not let them try? "Okay, go ahead but if you run into trouble, I'm right here to help." sounds much better than "No, you can't do that, you will make a mess of it." One hint, though. Don't let someone like me use the superglue. I spilled some on the counter and thought I could wipe it up with my hand. Enough said about that!

I give my sister and brother-in-law credit. They stayed away the day of the flood, but the next day, "impulsively" stopped by to bring me some tomatoes and peaches. They never added "and to check on things."

On to the second question. "Why do you let him/her just sit there with the tv on, not doing anything?" Another one is, "Why do you let her/him sit there and take naps all day." There are a lot of ways of asking a similar version of the same thing, as you can imagine.

If you will allow me to wear my caregiver hat for a while, I will try to explain it. My husband, who has Alzheimer's, always loved sports. I used to say he would watch turtle races if they were on tv. I actually saw him watching lawnmower racing once. He still insists he loves sports and is quite happy if I let him sit in his recliner watching them. He doesn't always understand what is going on and gets confused, but he seems to still enjoy watching. Yes, he nods off quite often, but he needs the rest. He still sleeps at night. He is not interested in anything else, but, to me, so what? To me, it is all about quality of life. He is happy, that's my biggest goal, to keep him that way.

Now, back to wearing the hat of someone with FTD. We need a lot of sleep. As I often mention, our brains seem to need more sleep than our bodies do, and our bodies need a lot! We also tend to know what we can do on any particular day. I can get out of bed in the morning and tell you if I can do things that day or if I just need to sit around doing nothing. Days when I feel like I can't do anything are usually days following a day when I did too much. Too much can be going out shopping, entertaining visitors, anything that requires my brain to do a lot of work. We have to learn to listen to our bodies and brains so that we can learn when to stop and do nothing. Pushing ourselves too far can cause a worsening of symptoms. Fortunately, most times we bounce back after a couple restful days. 

It really helps if caregivers understand this so that they can schedule a day or two of downtime following a day of doing more than usual. If that isn't possible, it helps if they at least understand that the next day will likely bring out the cranky, grumpy and disagreeable FTD'er. Yes, I do realize how difficult this can be in real life. I can't tell you how many days of trying to make it through a day with FTD after being exhausted taking care of my husband. 

One of the best parts of my day is in the morning, taking an hour for myself before my husband gets out of bed. I drink a hot cup of coffee, read the newspaper and enjoy the peace and quiet that someone with FTD needs. As long as I don't find water in the basement along the way.,,