This week has been stressful as we get closer and closer to Christmas. We are travelling to our daughter's home this year, so planning and stress has increased. I've made lots of lists which certainly help. The biggest thing that helps is the realization that it doesn't matter if I forget anything or don't get something done. The only thing that matters is that I get to see our daughter for Christmas! The gifts are wrapped, the baking is done and cookie trays have been delivered or mailed. I cut back on the number of cookies baked and gifts bought to reduce the stress and it doesn't matter because those aren't the important things. Though some who love my cookies may disagree.
Today is Sunday, but we still had to run some errands. We needed to get what I need for Christmas dinner and also sent a list to my daughter of what I need her to have on hand. I have kept our Christmas dinner simple and she will help me cook, so no worries there. We went to the state liquor store to get some bubbly for Christmas morning mimosas and some wine for with the dinner (okay, I'll admit it, I had to call my daughter and ask her "what is that wine I like?") then went to my favorite Hallmark store. They called a couple days ago to invite me to their "secret sale." They started this a couple years ago. They call their "top customers" and invite them in, with a code word, so we can get the day after Christmas bargains ahead of time. Since there is no way I would venture out the day after, just like I avoid Black Friday, I love this opportunity.
I just love this Hallmark store. It's not the biggest of ones of all that I have frequented in the various places I have lived across the country, but it is definitely the friendliest. The same pleasant, lovely ladies have worked there forever, or at least for the 10+ years we have lived here now. They almost always remember my name, maybe only the first or the last, but they always seem happy to see me and I am just as happy to see them. Today, though, I made a total fool of myself. My FTD kicked in big time and got me totally confused and befuddled, enough so that it was plainly obvious. The loveliest lady of all was helping me and was as sweet and helpful as always, very patient and understanding. When I still couldn't remember what the ornament was that I still wanted, she said to just call her when I remember and she will set one back for me. See what I mean? Wonderful store, wonderful service! Unfortunately, just as I was turning away from her, I saw "the look." What look, you say? The look of sympathy, the look of "that poor woman, what a shame," the look of pity... that look!
The look comes from love and caring, but it totally defeats me sometimes. I don't want to be the person who is pitied. I am so very proud of all that I can still do and still have my pride, maybe too much, but I definitely have it... until I see the look. I don't know how to explain to you how to not show it. It is pretty difficult when you see someone you care about being defeated by FTD, or any other dementia, to not feel sympathy or pity to some extent. Perhaps my advice would be to just hold it in a few more seconds until you know they can't see it in your eyes.
Above all else this week, I wish you all a very blessed and Merry Christmas. May it be filled with love and comfort and even throw in a big bunch of fun!
Sunday, December 21, 2014
Sunday, December 14, 2014
Happy Holidays
I titled this post "Happy Holidays." No, this doesn't mean I am being politically correct and not saying Merry Christmas. FTD'ers are not very often politically correct since we have no filter between brain and mouth. For instance, I now have a horrible potty mouth and say things I would never have even thought, much less said out loud. It is sometimes quite scary and makes it very easy to offend others.
What I want to talk about is literally keeping the holidays happy. I was lucky with Thanksgiving. We keep Thanksgiving simple, usually with a limited group of family, or maybe a friend or two thrown in. I don't remember ever having more than 10 for Thanksgiving. This year, it was just three of us and I prepared as much of the meal ahead of time as I could and then at the last minute when I needed help, I asked for it. I also screamed out for them to shut up, that I needed calm. Fortunately, they love me enough they understood.
I have always ensured that my Christmas shopping was done by Thanksgiving. I started doing this when we moved to Philadelphia a bunch of years ago and I discovered that the phrase "City of Brotherly Love" meant nothing among Christmas shoppers! So that part was okay again this year. I am well known within our circle of family and friends as a baker. I love to do it and was always pretty good at it. I used to say I was internationally acclaimed as a baker, but that was only because two friends had moved to foreign countries... one to Canada and one to Brazil, but one is already back and the other is moving back on Christmas day.
I have discovered that baking is no longer second nature to me. Some of my cookies are more complicated than others, others easy but time-consuming, and the rest pretty darned easy. Uh, not so much anymore. The complicated cookies that used to take an entire day to make, this year took me three days... one to make the dough, one to make the cookie and one to fill the cookies. Needless to say, I'm pretty far behind this year. I used to spent 3-4 days doing all my baking, but have already put in a full eight days and still have five more kinds to go. This may have to be the last year I make them all, and this is a very sad realization for me. But to have any hope of having a happy holiday season, I must simplify things.
All the presents I bought before Thanksgiving? Not a one of them is wrapped yet. My husband addressed the Christmas cards, but I still have to write the notes and sign the cards. Notes will definitely be just a few words since my handwriting is now horrid and gets illegible after a while thanks to my FTD. I can't bring myself to put the gifts in gift bags to make it easier, but I'm guessing I will have to do that next year.
So, if you have a loved one suffering from an FTD, here's some ideas to help. Offer assistance. Offer to wrap packages. Offer to help put up decorations. Offer to help with baking. I, personally, can't bring myself to let anyone help with my baking, but have learned to let my husband do the cleaning up afterward and I do make a mess! I do sometimes accept his offer to help me put all the ingredients in the bowl so I don't lose count or leave something out. Offer to bring a meal a couple times in the couple weeks leading up to Christmas. I find that after doing a Christmas related task, be it decorating, baking or anything else, when it comes to dinner time, I'm at the point that one more decision or one more task is too much. Yesterday, after baking, I literally curled up in a ball on my bed and hid for a couple hours. When I was able to come back out, my wonderful husband volunteered to go pick up some dinner. I have help addressing cards, but others may not and that would be a big help.
Most of all? Help keep things as calm and quiet as possible. If they reject your help, try to stay out of their way so you don't add to the confusion. And, when like I did today, they leave a vital ingredient out of a recipe (In today's case, omitting a entire pound of powdered sugar makes your cookie filling pretty darned bland.), laugh with them and help them fix it. In this case, adding the sugar at the end of the process changed the consistency quite a bit, but it still tastes as good.
The ultimate help? Keep things simple!!! And... for the FTD sufferers reading this, don't be as stubborn as I am. There is nothing shameful about having to ask for and accepting help and cutting back on some of the traditions. Keep it happy!
What I want to talk about is literally keeping the holidays happy. I was lucky with Thanksgiving. We keep Thanksgiving simple, usually with a limited group of family, or maybe a friend or two thrown in. I don't remember ever having more than 10 for Thanksgiving. This year, it was just three of us and I prepared as much of the meal ahead of time as I could and then at the last minute when I needed help, I asked for it. I also screamed out for them to shut up, that I needed calm. Fortunately, they love me enough they understood.
I have always ensured that my Christmas shopping was done by Thanksgiving. I started doing this when we moved to Philadelphia a bunch of years ago and I discovered that the phrase "City of Brotherly Love" meant nothing among Christmas shoppers! So that part was okay again this year. I am well known within our circle of family and friends as a baker. I love to do it and was always pretty good at it. I used to say I was internationally acclaimed as a baker, but that was only because two friends had moved to foreign countries... one to Canada and one to Brazil, but one is already back and the other is moving back on Christmas day.
I have discovered that baking is no longer second nature to me. Some of my cookies are more complicated than others, others easy but time-consuming, and the rest pretty darned easy. Uh, not so much anymore. The complicated cookies that used to take an entire day to make, this year took me three days... one to make the dough, one to make the cookie and one to fill the cookies. Needless to say, I'm pretty far behind this year. I used to spent 3-4 days doing all my baking, but have already put in a full eight days and still have five more kinds to go. This may have to be the last year I make them all, and this is a very sad realization for me. But to have any hope of having a happy holiday season, I must simplify things.
All the presents I bought before Thanksgiving? Not a one of them is wrapped yet. My husband addressed the Christmas cards, but I still have to write the notes and sign the cards. Notes will definitely be just a few words since my handwriting is now horrid and gets illegible after a while thanks to my FTD. I can't bring myself to put the gifts in gift bags to make it easier, but I'm guessing I will have to do that next year.
So, if you have a loved one suffering from an FTD, here's some ideas to help. Offer assistance. Offer to wrap packages. Offer to help put up decorations. Offer to help with baking. I, personally, can't bring myself to let anyone help with my baking, but have learned to let my husband do the cleaning up afterward and I do make a mess! I do sometimes accept his offer to help me put all the ingredients in the bowl so I don't lose count or leave something out. Offer to bring a meal a couple times in the couple weeks leading up to Christmas. I find that after doing a Christmas related task, be it decorating, baking or anything else, when it comes to dinner time, I'm at the point that one more decision or one more task is too much. Yesterday, after baking, I literally curled up in a ball on my bed and hid for a couple hours. When I was able to come back out, my wonderful husband volunteered to go pick up some dinner. I have help addressing cards, but others may not and that would be a big help.
Most of all? Help keep things as calm and quiet as possible. If they reject your help, try to stay out of their way so you don't add to the confusion. And, when like I did today, they leave a vital ingredient out of a recipe (In today's case, omitting a entire pound of powdered sugar makes your cookie filling pretty darned bland.), laugh with them and help them fix it. In this case, adding the sugar at the end of the process changed the consistency quite a bit, but it still tastes as good.
The ultimate help? Keep things simple!!! And... for the FTD sufferers reading this, don't be as stubborn as I am. There is nothing shameful about having to ask for and accepting help and cutting back on some of the traditions. Keep it happy!
Sunday, December 7, 2014
FTD Info, Safety Aids, and a Huge Thank You!
First off today, an update to last week's post: I found the source of the list of differences between FTD and Alzheimer's that I included. It is from the Association for Frontotemporal Degeneration and can be viewed at
http://www.theaftd.org/understandingftd/ftd-overview
Lots of good additional information there, definitely worth checking out by caregivers, sufferers, loved ones and just anyone interested in knowing more.
I have another practical suggestion and recommendation. I have mentioned on previous posts that I have developed weakness in my right leg. It seems like the signal does not go between brain and leg. Because of this, I have been tripping a lot and falling as well. I don't know if I mentioned it before, but one of the first things we did was re-install the door leading to the finished basement rooms. This was in case I again fell in the upstairs hallway. If there was no doorway, I think we would have put up a gate of some sort, but would have never called it a baby gate. That would have been too humiliating, but I digress here.
The next step we decided we need to take was to remove unnecessary throw rugs and to adhere the other rugs to the floor. I remembered hearing about "Ruggies" on infomercials. I was hugely skeptical, because the claims made in infomercials are in the category of "if it sounds too good to be true, it probably isn't true" category. But I thought, what the heck, why not try them since I couldn't come up with a better solution. I bought mine on ebay, because I am reluctant to trust those "call now" numbers and give my credit card info. I am pretty sure, though, that they can also be bought in stores that have an "as seen on tv" department. I know CVS has a section of this stuff, as well as our local department store, Boscov's. I imagine a lot of other stores do as well, but, again, I am digressing.
These things really work! It took me a while to figure them out because I was stubborn enough that I had to do it and couldn't ask my husband to help. I forgot that I should read the directions. Oh no! I must be turning into a man! Sorry, guys, I know it's my FTD and that men just can't help not asking for directions! After reading the directions, it was pretty easy. The part I was missing was the statement of "if the Ruggies will not stick to your rug, first attach one of the pieces of adhesive in the other packet directly on to your rug, then add the Ruggie. I now have the corners of our doormat, hall runner and area rug being held down without damaging either the rug or the floor. I love success!
I posted about this on the FTD patient support group that is my lifesaver and another member made an additional suggestion of a non-skid bathmat outside the tub. I should have thought about that already, but hadn't and I use terrycloth bathmats and have already slipped on the floor with one. I am lucky that our shower has strong grab bars (another suggestion if you don't have them) and one is right there by the entrance to the tub, so I am usually hanging on to that when stepping out. A nonskid bathmat is next on my to-do list. It will frustrate me though, because the newer washing machines tell you to never, ever, wash them in the washer and I cannot imagine not being able to launder a bathmat. If I find a solution to this one, I will be sure to post about it.
That's about all I have to drone on about this week. Except for telling you how wonderful my husband is to me. He even went to the grocery store by himself today because I knew it was not a good day for me to try to deal with it. There is a second private Facebook support group I go to, this one for caregivers and sufferers both, and when I see the posts of some of the caregivers and their anger toward their loved one and them even ridiculing their loved one, I realize how great he is and how patient, forgiving and loving he is to me. How horrible the lives of those sufferers of FTD must be in that environment. Thanks, Mike, I love you!
http://www.theaftd.org/understandingftd/ftd-overview
Lots of good additional information there, definitely worth checking out by caregivers, sufferers, loved ones and just anyone interested in knowing more.
I have another practical suggestion and recommendation. I have mentioned on previous posts that I have developed weakness in my right leg. It seems like the signal does not go between brain and leg. Because of this, I have been tripping a lot and falling as well. I don't know if I mentioned it before, but one of the first things we did was re-install the door leading to the finished basement rooms. This was in case I again fell in the upstairs hallway. If there was no doorway, I think we would have put up a gate of some sort, but would have never called it a baby gate. That would have been too humiliating, but I digress here.
The next step we decided we need to take was to remove unnecessary throw rugs and to adhere the other rugs to the floor. I remembered hearing about "Ruggies" on infomercials. I was hugely skeptical, because the claims made in infomercials are in the category of "if it sounds too good to be true, it probably isn't true" category. But I thought, what the heck, why not try them since I couldn't come up with a better solution. I bought mine on ebay, because I am reluctant to trust those "call now" numbers and give my credit card info. I am pretty sure, though, that they can also be bought in stores that have an "as seen on tv" department. I know CVS has a section of this stuff, as well as our local department store, Boscov's. I imagine a lot of other stores do as well, but, again, I am digressing.
These things really work! It took me a while to figure them out because I was stubborn enough that I had to do it and couldn't ask my husband to help. I forgot that I should read the directions. Oh no! I must be turning into a man! Sorry, guys, I know it's my FTD and that men just can't help not asking for directions! After reading the directions, it was pretty easy. The part I was missing was the statement of "if the Ruggies will not stick to your rug, first attach one of the pieces of adhesive in the other packet directly on to your rug, then add the Ruggie. I now have the corners of our doormat, hall runner and area rug being held down without damaging either the rug or the floor. I love success!
I posted about this on the FTD patient support group that is my lifesaver and another member made an additional suggestion of a non-skid bathmat outside the tub. I should have thought about that already, but hadn't and I use terrycloth bathmats and have already slipped on the floor with one. I am lucky that our shower has strong grab bars (another suggestion if you don't have them) and one is right there by the entrance to the tub, so I am usually hanging on to that when stepping out. A nonskid bathmat is next on my to-do list. It will frustrate me though, because the newer washing machines tell you to never, ever, wash them in the washer and I cannot imagine not being able to launder a bathmat. If I find a solution to this one, I will be sure to post about it.
That's about all I have to drone on about this week. Except for telling you how wonderful my husband is to me. He even went to the grocery store by himself today because I knew it was not a good day for me to try to deal with it. There is a second private Facebook support group I go to, this one for caregivers and sufferers both, and when I see the posts of some of the caregivers and their anger toward their loved one and them even ridiculing their loved one, I realize how great he is and how patient, forgiving and loving he is to me. How horrible the lives of those sufferers of FTD must be in that environment. Thanks, Mike, I love you!
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