Sunday, October 26, 2014

A Few Good Things...

Something wonderful happened this past week.  I received an invitation to join an online support group for patients who have a confirmed diagnosis of FTD... no caregivers, no Alzheimer's patients. Not that we don't like either of these groups. We would have a much more difficult life with no caregivers and we certainly understand that Alzheimer's patients have a lot to deal with as well, but it is not the same as FTD. Unfortunately, many support groups, research programs and information get lumped together as Alzheimer's and other dementias. Great for Alzheimer's, not so great for us "others."

The support group is great in that it is a closed and "secret" group. No one who is not a member of the group can see any of the posts. That makes it a comfortable and safe place to talk. It has been eye opening to me.  I have discovered that some of my nagging little problems are actually part of the disease.  I have discovered that there are many others who experience the same social issues. Can you imagine what a relief this is? Maybe not, but there is something wonderful about not being "the only one" experiencing things. I don't feel so alone in it now.

Another good thing that happened this week is that there is news that the Mayo Clinic has been given $6 million dollars to research FTD's. Just FTD's, not Alzheimer's and FTD's.  I imagine that amount of money won't go very far into research, but it is a good positive step. More education about FTD's has got to get out there. I often wonder how many more patients there are that do not get diagnosed because even doctors don't know enough about the diseases. It's pretty frustrating when you have to take a publication on the subject with you when you go to a new doctor to educate on the subject. It seems to me that they should already know and be able to teach the patients about it, instead of the other way around.

I also, just this week, came to realize just how much I appreciate my sister. Not that I didn't before, it's just different now. She is always there and ready to help me out. Often times, it's just getting me out of the house and enable me to do some of the things my husband has no interest in doing. Even if it is just shopping or going out for lunch. I can also talk to her and tell her "This is not helping me!" I am so very thankful that she moved back to this area a year and a half ago. She makes a big difference in my life. I actually called her and told her this a few days ago.  Yes, a few tears were shed... happy tears!

All was not sunny and bright this week, but I got through it all.  A little frustration here, a lot of frustration there, and while it does seem to be taking me longer to recover from stressful and frustrating events, I still can and that IS good.



Sunday, October 19, 2014

Rough Week, But Getting Better

I probably should not write a blog entry this week, it has been a rough one for me.  Nearly every day, I receive email and Facebook notices from a few different dementia and Alzheimer's support groups and research organizations.  One that I received this past week really peaked my interest.  It was recommending a book While I Still Can by Rick Phelps.  It sounded interesting, so I downloaded it onto my Nook.  Wow!  I will refrain from really recommending it myself because of how it caused a downward spiral into depression for me.  However, it would be an excellent book for anyone who is acting as a caregiver or who has a loved one suffering from Alzheimer's or other dementia. It gives you a good look at how it affects the patient and offers some helpful advice for caregivers.

In this book, Mr. Phelps, after much frustration, was finally diagnosed with Early Onset Alzheimer's Disease and was still in the earlier stages when he wrote the book.  I truly found myself envying him in some chapters, mostly because he could still drive and do a few other things I am no longer capable of doing.  In other chapters, I was thinking how fortunate I am that FTD has not yet robbed me of other abilities, mostly the ability to still read and to enjoy it.

In the chapter where he was talking about not being able to read more than a paragraph at a time, I started thinking. I still love to read and don't seem to have a lot of difficulty focusing on a book. I read an entire book nearly every day.  I will admit, however, that I keep my book selections to lighter reading than I have in the past, nothing that will stimulate fear, frustration or deep thinking.  In contrast to that, I can no longer enjoy watching a movie.  I can handle an hour-long television show most days, but find I need to keep my hands busy doing something to keep me from getting restless. Anything longer than that, I cannot focus on or follow the story. I also can only handle one or two shows in a day. Yet, I can sit for three or four hours and read. I am extremely thankful for that.

While I Still Can helped me realize that I am not alone in a lot of other symptoms as well.  He points out that some days, just the sound of a spoon dropped onto the floor is magnified to a hugely irritating level.  Some days, when my husband unloads the dishwasher (Yes, I am so very lucky, he does laundry too!) I find myself clawing at my own skin and tugging on my hair, it is just that irritating to my system. Fortunately, I don't do it to a level that I actually hurt myself.. Also up there is an intense fear of crowds, due to the noise and hubbub of activity. Blinking lights are horrid, leading quickly to what I call "sensory overload."  I could not understand why I have become so uncomfortable in other people's homes. Now I realize it is because in my home, I know where everything is... the rooms, the furniture and anything I might need. When out in public, I find myself avoiding eye contact with others in the fear that I might have to make conversation with them.  The grocery store is now my enemy... carts going every which way, background music, screaming children, fear of seeing people I know and trying to keep track of my list and what I need to get. Again, I am very fortunate to not have to try to shop alone.

A quote included in the book summed up how I feel often times:  "I used to have a handle on life... but then it fell off."   I sure lost that handle this week, but with patient help from my family, I feel like the handle is back in my hand.  Plus I know I get to see my therapist this week.  We are planning on talking about cutting down my appointments from every two weeks to once a month. I cannot tell you enough how much of a lifesaver she has been. I strongly recommend finding a therapist who specializes in working with dementia. It takes someone who understands dementia to realize that my depression is a result of the dementia, not the cause of it!

Saturday, October 11, 2014

Be Honest and Share What You Are Feeling

A good friend of mine posted two of those cute little posters on Facebook today:

"Relationship Rules: There is no feeling more rewarding than the one that comes from being honest. Be honest, both without yourself and your partner.  Life will be so much simpler."

"Do you ever get that feeling where you don't want to talk to anyone, you don't want to smile and you don't want to fake being happy, but, at the same time, you don't know what's wrong?"

Both statements hit me hard, because it reminded me about what my therapist has been helping me work through. Take the first statement and substitute the word caregiver. I tend to cover up when I can't think of the right word, can't figure something out or just feel confused. I also remember the family members I have helped care for who suffered from Alzheimer's Disease doing the exact same thing.  We get pretty good at it too! This practice actually makes some sense when out in public or in a social setting, but I need to remember to be honest with my caregivers. When I don't, that is when conflict begins. For example, if I am trying to put something away and can't remember where it belongs, my husband or sister will ask "don't you remember where that goes?" or something along those lines. I don't want to admit that I can't, so instead, I find myself snapping at them, something like "Of course I know where it goes, I was looking for something else." Then I put it away wherever I can.  This is not helpful to either of us, not to mention difficult to find things later. I should admit that I don't, and let them tell me where it belongs. I have to realize that they are not being critical, they are trying to help.  This is a simplified example, but still brings the message across.  It is much better to be honest with myself (and accept) my weaknesses. Then, together, we can figure out ways to deal with them.  I have been working on this, and it truly has been keeping things calmer around here, which helps immensely.  The calmer I am, the easier it is to deal with things.

On to the second statement my friend posted. I think we all have days like that. I know I certainly do. Again, I have found communication to be the issue. If I admit the feelings to myself and let my husband (or my sister) know that's how I am feeling that day, we can deal with  it together. Those are the days to not take on complicated tasks, don't try to cook a meal that takes a lot of preparation, or tackle anything new. So, if I admit to the feelings I have that day, they can help me to keep things simple and calm... just what I need on those kind of days!

Sunday, October 5, 2014

Just Let Me Do My Own Thing

This post is directed to all the caregivers out there.  First of all, God Bless You!  You have one of the most difficult tasks imaginable.  I can relate to your side as well because I helped care for my Grandmother, Mother and my Aunt, all who suffered from Alzheimer's and have since passed on.

I know I have mentioned this before, but one of the most difficult things for me, is to do more than one task at a time.  Sometimes, though, it's not easy to realize what makes a "task."  Basically, it is anything that causes me to focus my thinking.  Today,  it was as simple as putting away some groceries.  This used to be an easy, mindless task, but not anymore.  My husband distracted me several times during the process.  I am sure these didn't even seem like distractions to him.  When I was trying to fit things into the freezer compartment, which is never an easy task with a side-by-side, he had a bag in each hand.  He asked me to take the  bottle of juice out of his bag and put it into the refrigerator.  The next time, it was when I was putting canned goods into the  pantry and he tried to take a jar of salsa out of my bag because he knew he was going to use it during the upcoming football game.  I had already left one of the jars of salsa out on the counter for him, and the interruption was just enough to get me befuddled again.

I know some of you are saying, "Wow, she  is getting really picky."  No, I'm not.  It's just the way my mind works now (or really, how it doesn't work anymore).  I truly can only focus on one thing most of the time or, sometimes, even  just one aspect of a task at a time.  Unfortunately, my frustration leads me to be short with  him or even snap at him.  I wasn't angry or  upset with  him, I was just totally frustrated and angry at myself because I got unfocused and stressed, leading to a difficulty completing such a simple task.

This is the point I was leading to... when a dementia patient gets angry or lashes out, please stop and realize that it is most likely not you they are angry or frustrated with... it is with themselves.  Think about whether you have made the environment too confusing, sometimes even with your attempts to help.  Try to calm things or simplify things, but be careful not to be condescending.

I have come up with my own word.  You notice I use the term "befuddled" a lot.  To me, it totally describes how my brain gets twisted up and confused.  Now, I have come up with "unfuddled."  Yes, a silly, made-up word, but is the process I have to go through to get myself refocused and unstressed.  It sometimes helps for me to get involved in a different, simple, solitary task.  One that I can focus on and be successful at completing. Deep breathing helps me as well.  At times, I picture a simple jigsaw puzzle in my mind, I see it as a completed puzzle and it helps me focus.  Not sure why, but it works for me. I'm sure other dementia patients will find other ways to cope.


Wednesday, October 1, 2014

Powerful Video


Just a short post for today.  I was just scrolling through Facebook and found this link.  It is a powerful video about caregivers experiencing what a dementia, in this case Alzheimer's, patient experiences day in and day out.  Something everyone should see.  Here is the link.

https://www.youtube.com/watch?v=LL_Gq7Shc-Y