Monday, April 22, 2019

Are They Really Out To Get Me?

I don't think there is anything more frustrating to someone with FTD than to be told they look like there is nothing with them.  I know how much it frustrates and irritates me because I know I don't look nearly as good as I used to.

Yesterday was a glorious day, so much so that I went outside and sat on the wall along our driveway to soak up some  sun. Our neighbor saw me and came over. We spent a few minutes talking about the new neighbors and the progression of my husband's Alzheimer's Disease. After a few minutes, he looked at me and said, "Cindy, you are looking good." I replied that it was because FTD doesn't always show in the face until later stages. His reply, "No, you really look good."  After bristling a bit, I replied "Thanks, I guess the strain and fatigue of caring for someone with dementia when you have your own kind of dementia just doesn't show on the face."  That was my polite way of saying "Stuff It!" I guess he got it because he walked away shortly after that.

This really bothered me, as usual. I was angry and felt rejected as a person, not just as someone with FTD. Then this morning, I read a caregiver's post on one of the support groups about how her loved one is so paranoid.  My immediate reaction was "Oops!" I consciously realize that I do suffer from paranoia. My FTD friends have often remind me of it when I am questioning them about how someone has treated me. That is why I reacted to my neighbor the way I did. I did not believe him that I looked good, even if he was implying that I was looking good despite all I was dealing with. I probably did look better than I usually do because I had been sitting there relaxing and probably even had a little color on my cheeks for a change.

Responding to this caregiver's question really made me think inwardly. So, why do I suffer from paranoia. A huge part of it has to be the anger and frustration I feel at not being able to do the things that I was able to do pre-FTD. Not being able to, and, not having the energy to do them even if I could.

I know I have previously talked about the loss of my artistic talent and how that has affected me. I hate it! I loved my painting, my ability to create gorgeously decorated cakes and the awards I have won for my ceramic art. Perhaps I took too much pride in them, I don't know. While I loved my accomplishments, I always down played them to others. I think it is more that I experienced self-satisfaction from it. It was more a part of my self-identity. We all need to feel appreciated and that we can accomplish things that we want to.

When FTD robbed me of these talents, my identity, it was beyond frustrating and I realize created a lot of the anger I had toward the disease. Now, whenever anyone talks about my artwork or sees some of it, I cringe. I don't want to hear about it. In fact, most of my artwork is hidden in the basement. Seeing it makes the feeling of loss much worse.

In addition to the loss of my artistic abilities, I have lost my ability to cook the way I used to, not to mention baking. Again, I felt people identified me by these abilities. I do recognize that, for someone with dementia, I do look fairly good. Plus the fact that I still smile easily helps some as well. However, when someone says that, I believe they are lying just to make me feel better. Yep... paranoia!

Does FTD cause paranoia?  It surely can.  "Paranoia is sometimes a symptom of certain physical illnesses such as Huntington's disease, Parkinson's disease, strokes, Alzheimer's disease and other forms of dementia." (Quote from Mind, For Better Health website."

Paranoia can be much more than just thinking someone is "out to get you". Yes, it does often manifest itself in that way. However, it does a whole lot more. It strips a person's confidence and can leave them lonely and frightened. It can cause panic attacks and the tendency to worry about absolutely anything and everything. People with paranoia often appear to be selfish and self-absorbed. Those with paranoia often push people away and when that starts to work, they believe this is proof that they were right all along.

Another point is that depression and anxiety can cause or worsen paranoia. I don't know of anyone with FTD who does not have some degree of both depression and anxiety. You can see, therefore, how these things just compound each other.

So, what do we do?

Advice for the caregivers:  Understand what paranoia is and look for the signs of it in your loved one. Many people with FTD need constant assurance that they are okay and that they are still loved. They can also have a fear that their loved ones will leave them. Myself, I realize when I am being obnoxious to my loved ones. I don't mean to be, but I also cannot stop that behavior. I have the behavior variant of FTD and there are a lot of behaviors I cannot stop before I act out on them.

Also, as difficult as it is, try to realize that the nasty things they can say, accuse you of doing or nasty things they might do, are possibly stemming from paranoia. Try reassuring them even more that you love them and will always be there for them. Come think of it, this happened in my life just a couple weeks ago. My husband's anxiety level was going through the roof and I was at my wit's end. After I calmed down, I sat down with and talked. I ended up reassuring that I had no intention of putting him in a nursing home and that the only reason he was in one for a couple months was a separate illness and once it was under control I had fought everyone there to get him home. He was so much calmer and I could only wonder why it had not occurred to me sooner that he was worried about this. Now, I wonder if his anxiety was from paranoia causing him to think I was trying to get rid of him.

My advice to those with FTD is basically the same. Try to learn what paranoia is and what things that are frustrating you just might be a feeling of rejection that are being caused by paranoia. Also, paranoia, depression and anxiety can all feed off each other making each worse. Do not be afraid to seek counseling to help you through. Therapy is covered by Medicare or there are often free or reduced cost mental health services available. 

Personally, I see a psychologist, at least once a month, and she has no problem telling me that what I am complaining about is really my own paranoia. Seeking help or recognizing paranoia, anxiety or depression does not mean you are crazy or that you have a mental illness. It can be symptoms of FTD. Talking about it with a confidential and neutral person helps me immensely.

Also, for those with FTD, stop and think if perhaps some of the problems and/or anger between you and your, family members, friends or caregivers just might be signs of paranoia. Many with paranoia firmly believe, not just think possible, that no one wants anything to do with you. Then, we convince ourselves that, "See, I am better off alone," and pull away from others even more. It can be a vicious and endless cycle. Look for ways to end that cycle. Talking to each other calmly, talking to a neutral psychologist or even a friend just might help you realize that you are looking at things through glasses formed from paranoia.

For me personally, it is a good thing I am scheduled to see my therapist soon. After researching this topic, I know I have a lot more to talk to her about!

Saturday, April 13, 2019

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. 

Sunday, April 7, 2019

Things Running Through My Mind

This has been a stressful week. Following up from last week's blog, smart phones should come with a warning:  "Someone with FTD who was still using a 20+ year-old Motorola Flip Phone should use caution when operating this phone." 

I can answer calls. At least I think I can. No one has the number so no one has called. I can access my email and Facebook. Better yet, I can download and play games. I have been spending 2-3 hours every day trying to get familiar with the darned thing. I compare my efforts to learning how to operate a computer after only using an abacus. To those of you not old enough to have been taught how to use an abacus, don't worry about it. To younger folks, they most likely resemble a baby toy. I do not think the skill is taught any longer. They could make a quite interesting display item.

So, after a week of trying to use this modern device, I am fairly convinced that with some additional tutoring from my daughter who understands FTD and smart phones, I will eventually get there. I do hope, though, that I do not become a phone addict like most of civilization. I have enough trouble walking, I don't need to be looking down at the same time.  

Then comes today. I open up my blog only to be told that Google+ has been eliminated and it may affect my blog. Of course, the "information", and I use that term loosely, is in jargon that leaves me saying "What the hell? Who wrote these instructions?" 

I followed the directions to back up the blog so I would not lose all my previous entries. The intention was all well and good, except that when I open the file, it is all gibberish. All these letters, numbers and symbols are my blog archives? How do I turn it back into what I have written? I have to trust that somehow it will work. Otherwise, sorry, but everything written before now will be gone. 

Yes, I have a headache now. When I remember how I used to be able to get a computer to jump up and dance, I just want to cry. I created a billing system within a software package that did not include one, a proud moment. I created an inventory system using just a couple Excel spreadsheets. Yes, it was simplistic, but it worked for what we needed. So, thanks FTD, I feel like a bumbling idiot who is futilely trying to do something that used to be second nature. 

I guess both of these examples fall well within my latest vow to myself. The vow was to stop expecting do everything or even be able to. Just because I could do it all before FTD, I must admit that I just cannot any longer. Beyond that, the goal is to learn that the world does not depend on my abilities and actions alone. I kind of took up the mantle from a family member who always did everything she could to help others until she was forced to slow down from dementia. I am allowed to slow down a bit as well.

I am not saying that someone with FTD has to stop doing everything. I think we should keep active. I think we should keep trying to do things we used to. I also think we should try new things. We may not succeed, but I still think it is important to keep trying. 

For an example, I used to be an artist of sorts. I won local and national awards for my work in ceramics. I did a lot of tole painting, along with just about every other kind of painting. Since FTD, I cannot paint a thing. I recently attempted once again, thinking that maybe it was just "a phase."  Nope, couldn't do it!  I am in awe of the many people with FTD who have discovered new talents or realized they could still do what they did before. Some of the artistry that many of my FTD friends produce is phenomenal. I figure I had my turn at being creative, now it is time for others to step into their creativity. It's my new task to sit back and enjoy their creations while still doing all that I can. 

How many times have we been told (I know I have repeated it often enough) that every case of FTD is different? I am so happy that I still have the ability to write and speak. What it all comes down to, I believe, is that we should stay active, stay creative or use any of our other talents. 

The other day, someone asked me how I manage to always have a smile on my face. (Not true, but much more often than not.)  I answered that just because I have a life-ending disease, my life doesn't have to end now. 

Today, my smiles are because AFTD's Educational Conference is only 3 1/2 weeks away! I hope to see all of you in Los Angeles!