Vickie, I think they really do not comprehend what death means when they get to a point. My SIL is 3 years ahead of my hb and at their dad's funeral in June I do not think she really comprehended what was going on. She did not understand why my hb was crying so much or everyone being upset. That could be him too. They see the dead person, but emotionally they are disconnected to the reality of it. Also, I think when we get to a point in life, we often accept it as a part of life.
I was just thinking.... Do you all think perhaps people say, "You husband looks wonderful!" or "He looks just fine to me" thinking they are being complimentary? Much the same as one might say, "You look so nice today" or "I love your hair!". Often, we received the former compliments as though they were saying, "I don't think he looks like anything is wrong", or "He looks perfectly normal to me!". I used to bristle at those comments. I took them to mean that they didn't believe he had such a horrible, debilitating brain disease that was stealing him away from life as we knew it, bit by bit, day by day.
I know I was guilty of that. I wanted everyone to know, to understand and to acknowledge the hopeless future that was ahead of us. But now I wonder how I might have felt if the same people would have come to me back then and said, "Oh my gosh, he looks so bad. I would never have recognized him. His eyes look so strange! Scary!" Would that have made me feel better. I can assure you that my answer would be "definitely not!".
Maybe the compliments about 'how he looks' was, indeed, their way of saying, "You're doing such a good job taking care of him."
Or maybe I was right in the first place. They just didn't believe me.
I think that people sometimes say that because they have nothing else to say. My mom says it to me all the time but she knows about all the other problems.
That's the point I was trying to make, JeanetteB. People DO want to be positive, they really don't know what else to say, Deb, ... and so I guess I was just trying to say that perhaps we should give those people we are not so close to, say an old time friend or someone at church,permission to say these things and UNDERSTAND why they do.
That being said, when my husband's SON and DAUGHTER would tell me that they didn't think anything was wrong with their father because he sounded OK over the phone...(and they had not visited him in 3 years) - then THAT MADE ME MAD! They couldn't see that he no longer could manage to eat with silverware, that he drooled and dribbled when he ate and drank, that he couldn't find the bathroom without someone to help,..couldn't sign his name, etc. - and they'd say that he still SOUNDED perfectly normal to them. Truth be known, they did all the talking and he'd just listen. argggggggggggggggggggg! I do recall however, that good listeners are generally perceived to be highly intelligent people.
Today is a better day than yesterday when we had our first major snowstorm that caught us by surprise. I navigated thru slick roads and no visibility to get to my husband's Saturday daycare to give me a little break (as Monday thru Friday just covers when I am working). Bad move! Did get home in one piece but both cars got stuck in the driveway. A neighbor with four wheel drive barely got me back over there to pick him up. Lots of accidents. It's going to be a long stressful winter, I'm afraid!
nancy b - think you have a good point. Instead of getting upset and assuming they don't believe us, we should give them the benefit of doubt and assume a compliment. Except for family and people that should know better.
Our daughter from Chicago flew in for a quick visit - arrived Thursday afternoon, left early this morning. It was great having her here. She cooked a "Thanksgiving" dinner for us last night. My wife seemed to enjoy the visit, but didn't say much.
Hello all. Read Joan's blog on the driving issue just now with great interest. Soon to be ex-H took me to the airport in October. I was going to NYC to visit my son, his wife & my new granddog. When we got to the airport he declared that the airport was closed. It was 7:30 p.m.! He said he wasn't just going to leave me there, because he was NOT coming back to get me, I could stay in a hotel. I told him I could see people in there & it was not closed. Happens there was no one in line for my airline, I guess because the flight had been delayed. I had kept up with the news of the delay not to arrive too early. He actually left the car & came in with me to "show me it was closed." So, being satisfied that the airport wasn't closed, he left.
Well, the trip to pick me up was a nightmare. I stood outside for 30 minutes trying to reach him on his cell phone, which he didn't answer. Finally he drove up & told me he had gotten lost in a parking deck for 30 minutes. Well, I asked him why he didn't answer my calls. Because he had forgotten to bring his cell phone. On the highway going back, he got into an exit only lane for an exit that wasn't ours & could not get back onto the highway. So we ended up driving around in a scary neighborhood, he couldn't find his way back to the highway. Then, since we were in the city, I suggested we just drive through the city to my place, but he insisted on finding the highway, which he did with my help. This way took twice as long, "but he always takes the highway." I just kept my mouth shut & tried not to have a nervous breakdown. (I can't see what I'm typing, because my cat Katrina is in front of my monitor watching the words form, pls. excuse errors.) I go back to NYC in December, and I will NOT be asking him for a ride.
He has filed for divorce "so he can move on with his life." The information in Joan's blog made me very nervous. The divorce will take 2 to 12 weeks to bcome final. I will admit that our airport is very confusing. They have expanded it, and the signs are difficult to follow. But how does it take someone 30 minutes to find their way out of a parking deck? He was very proud that he didn't have to pay.
I think once the divorce is final, I will notify his doctor. I am hesitant, because I know he will have a fit & I don't know what he might do to me. He has never been physically abusive, but who knows what can push someone over the edge. And he is in the "buying property tax lien business" now (Ha) & drives to Atlanta once a month. So he would perceive this is my taking away his livelihood. When he 1st got into this he told me that it was rare that you end up owning the property. Well, he is now the owner of a condo in Atlanta worth $30,000. He will have to hire a lawyer to handle all that. I see I am starting to ramble. It's just the situation that I don't really know how bad his driving is, and I don't want to be in harm's way. Since I won't be getting into a car with him, I will have no way to gauge the situation. He doesn't even go for an annual physical for an xray, after lung cancer, "because he's been xrayed enough." At least I won't be legally responsible in the near future, but the ethical question remains. We all know his driving is not going to get better.
On a lighter note, I fell in love with my granddog Parker. He is part Wheaton Terrier, part Shy-Szu (divvi, help with the spelling!) I didn't know Shy-Szus have eyelashes like a human. I kept looking at his eyes in disbelief. But we went to a dog & cat show while there called Meet the Breeds. Met the breeders of the Shy-Szus & turns out they are the only breed that have eyelashes. It was like the Westminster dog show, but you actually got to pet the animals. Fun! Parker is not allowed on his parents' bed, but I let him sleep with me on the air mattress. :-) He looks like a lamb.
Good to hear from you, Kitty, but sorry about the driving issue. Sounds dangerous.
We have a Shih Tzu. She is a doll baby. Such beautiful eyes! They actually have two eyelashes on each eye - one is hidden, but it's there. Millie loves DH, follows him around, sits on his chest and sleeps in our bed. She is spoiled rotten!
Just came home from taking my husband to the ER. Blood in his urine, stiffness to the point when he was moved, he would cry out in pain, could not walk at all today & slept most of the day yesterday & today. He has an UTI which was what I suspected. However, since he was found on the floor at the ALF & not being able to walk the doctor wanted him to have a CT Scan. Bless his heart, when he was catheterized he screamed for his Mommy. He back at the ALF & was in good spirits & awake. He amazes me he can go from being sick to happy go lucky in 1 day. Hopefully, tomorrow will be a better day for him.
Poor guy, Kadee. Bless his heart indeed. It's a bright sunny morning here. Haven't been out yet, but it looks cold. We are invited to a "family day" at dh's day care center today. He can either sit with me or join one of the groups, even though it's not his day for day care. New experience for me, hopefully I'll meet some of the other caregivers of the people in his group. Meanwhile he's been showered and dressed by his favorite aide (we've had 8 different ones, and counting, but this girl has come three times now) and is getting restless so I'll have to think of someplace to go until it's time for the gettogether. How about some really exciting grocery shopping?
Vickie, thanks. Did you mean 2 rows of eyelashes or 2 eyelashes?
I haven't visited here in quite a while. So overwhelmed with restoring my house & working. But to read all the posts, I give you all gold stars for bravery. My life is so peaceful now, I can hardly remember all the chaos. I know I made the right decision for me.
hi kitty, good to see you posting. sounds like the driving issues will be a difficult decision. all you can do is suggest he see his dr for a physical and try to alert the dr as to your concerns prior to his visit. like you say the good thing is you are off the hook once the divorce is final thank goodness. lets hope his driving doesnt get anyone hurt. glad you enjoyed your sons visit and new grandog. i am enjoying doting and pampering my old little guy here too. hes getting alot of attentions after i lost my precious girl in sept.
kadee i am soo sorry about the uti. they are never easy and poor dear having to be cathered isnt a fun thing. we have been thru this everytime a uti is suspected now for years since dh is in depends you cant get a clean urine sample without catheter. bless his heart asking for his mommy. omg i bet that was very hard for you. and yes they can respond in 24hrs with fast meds its amazing how fast a uti can take them down and meds can bring them up again. the change is dramatic.
sad news i havent seen any of the famous squirrley or scooby here in months now. i would like to think they are off tending to their own families now and enjoying fall and coming winter. i guess its best that they dont come for free handouts anymore as we all know nature has its own rules and its best we dont interfere. still i miss the little guys standing at the door and begging for peanut butter /jelly sammiches.. hahah.. aww. they were darn cute.
DH is holding his own for now but walking is almost nil and takes two of us to get him out of bed into his chair or shower. the worst effect is once they dont have much exercise the intestines begin to suffer and now the challenge is making sure the bowels and digestion are working. each stage brings its own challenging issues to deal with.
hope you all have a great day and approaching thanksgiving. divvi
Kitty, you can't see the second eyelash on each eye. But it's there!
Divvi, you have been so many stages, changes and challenges. Bless you for your endurance.
After raining all night and morning, the sun is out and it's beautiful now! Will help our spirits. Although, today DH has: fixed his breakfast, unloaded the dishwasher and put everything where it goes!; vacumned two rooms; cut up some veggies for dinner. This is all happening since taking him off Aricept and Namenda! He has so much more energy now and is "clearer" headed - not so much fog as he says! A good day!
Vickie, interesting that your DH is "clearer" headed after stopping Aricept and Namenda. I just had a massage therapist come to our apartment. She hasn't been here for over a month. She commented that my wife seemed much more alert than previously. We had recently stopped both Exelon Patch and Namenda.
Another interesting occurence. As I was getting the massage my wife was talking (not really understandable) and looking at a magazine. As the therapist was working on my legs, my wife suddenly came up and started rubbing my arms. She then leaned down and kissed my forehead, something she has not done for months.
Marsh, the change for the good has been amazing! Oh, he is not "normal", nor did I expect that. I just prayed that he wouldn't decline quickly and he certainly has not, but has done much better. All the research I have done indicates for most patients (note-most), those meds usually stop working after a period of time.
i also acknowledge that my DH became much more lucid and happier once off the namenda. i doubt if it werent for the bad side effects he was having from it i may not have chosen to take him off out of fear. it was like night/day just as vickie/marsh are describing. and he wasnt angy and aggressive like before. this surely confirms these meds are not tolerated by many dementia folks. and my has AD/vascular dementia combo not FTD. and it still caused lots of changes for the better taking him off. but some folks do tolerate it well and the good outweighs the negative.
This is about a Boston family that suffers from EOAD. Maybe Joan can put it on the front page. I did not listen to the video but read the article and send the lady a thank you for writing about it. It is a series she plans to do on the family.
On Monday, DH and I were on a panel at a conference on Early Memory Loss put on by one of the Regional Centers. Also on the panel were another man with early Alzheimer's, his wife, and a woman who helped take care of her father who had Alzheimer's and is caring for her mother who now has it. We were given a list of questions that the moderator might ask and replied to the ones he used. I enjoyed it. Well, at least until the end. when the moderator asked if there were any other comments, my husband decided to sing a song he wrote that goes to the tune of "Maria" from West Side Story. It begins: "Dementia, dementia, I've just been diagnosed with dementia." I was shocked when he began singing and very nervous that he would forget the words and be embarrassed. He did forget a couple of times, but managed to pause and remember them. We got a standing ovation, something that I as a math teacher am not used to. Quite a few people told us how much they appreciated our participation and what we had to say. I have to mention that there were nearly 300 people there.
I think that giving talks like Joan, Marsh and Marilyn (and her husband) do, and going to conferences like Janet and her husband do are helping spread the word to more people on how it really is in the trenches. Thank you all - and all others of you that do talks that I didn't mention!!!
I just got back from the Clinton Presidential Library where I got to see the new Clinton Presidential Park Bridge that is going to renovate an old railroad bridge into a pedestrian walkway across the Arkansas River. I love it when they find great uses for abandoned structures and buildings, and make them part of our lives once again in a different way. I am looking forward to walking across that bridge in July 2012. I am fortunate that the Library is just a few blocks from where I work downtown and can attend functions like this on my lunch hour.
Yesterday at my FTD support group meeting, an article on FTD was passed out. It is from Scientific American Mind by Ingfei Chen called When Character Crumbles. I know nothing about either the author or the publication, but the description of FTD behavior is totally right on the money! I rather bypassed the medical and went straight to the descriptions. Very well done, I feel.
I've heard about the article but haven't been able to read it. There is just a couple of paragraphs from the article on the magazine's website but you have to pay $5.99 to get the article. I think that is the cost of the whole magazine. I might go out and buy the magazine.
"....another day older, another day deeper in debt", as the old song goes. I continue to slog through the legal entanglements with Social Services, getting John qualified posthumusly for Medicaid. Beleive it or not. And the legal bills are mounting. Insurmountable, I should say. Another hearing has been set for December 15th, in Richmond this time, I fear. (more travel time and expenses for my lawyer to bill) UNreal. I'm having a hard time getting up every day, but how long can a person sleep and there are things I have to get done whether I feel like it or not. I've been all over trying to find a job. Applied on line everywhere, too. Options pretty well exhausted. I'm not a lazy person, a slacker, nor have I ever been. Trying to sell a few acres but the county isn't cooperating with me. Really finding it hard to dig up a smile, hard to just walk sometimes. The good news, is that I am supposed to be going out tonight. Just have to figure out where I put my fine "could care less" attitude and my smile.
A good day today. Took DH for his checkup, after being off Aricept and Namenda for about 8 weeks. Dr. said he is doing well, seems more cognizant and clear-headed. I'm happy with this. He has more energy, does not repeat the same question as much as he did, and can carry on a somewhat "normal" conversation. He also puts the dishes from the dishwasher away - in the proper place! LOL The difference has been amazing.
Hope you all will have a calm and peaceful weekend.
Vickie, The improvement in your DH after stopping the Aricept and Namenda is making me wonder if I should talk to the neuro about taking my DH off them. We see the neuro at the end of January so I just may suggest it then and hope for the best. I'm glad your DH is doing better.
Jean21, you may or may not get the approval from the neuro - depends on his outlook and expertise. My DH's son is a neuro (does not treat DH) and he agreed with me when I spoke with him of taking him off those meds. Then his GP also agreed, so I feel sure I did the right thing. But then again...if you've seen one.....you've seen one!
It has been a busy month for us. This time of year keeps me hopping. Yesterday we went out of town for a day trip to visit a friend who just bought a country store. We had a great time. DH and DD had fun and no fighting. We would always fight on a trip. We are all so much calmer now. DD knows how not to upset her dad and is very careful to keep him calm too. After our visit we went to the big mall in the next town over for DD and then to a big flea market for DH. On the way home I was going to get me a coffee, but missed my turn. But that was OK. The day was great with out my special treat. I know I can tell you all this, I feel like I am falling in love with my DH all over again. Not the same kind of love as before, but deeper. I think I had been so mad at him for so long, 10 years at least. That is all melting away, and I am starting to see him in a new way.
Stunt girl, I hope you are doing better this weekend. Wish I had some words of wisdom for you. I do wish the best for you and hope it will all work out soon.
Blue, good for you. Vickie, I am so glad for you, your dh's improvement sounds amazing. I have been thinking about the email I want to send to my brothers and their families before Christmas; it has become traditional that I let them know how Siem is doing before we all get together. This year he won't be there and I have to explain that. I am not worried about their reactions, most know already and they are behind me 100%. It's just depresseing to look at last year's letter and be aware of the decline. Day by day I don't notice it so much, there are ups and downs. Today we went to a chamber music concert in Rotterdam and out for pizza afterwards. I almost didn't get him there because he wouldn't get dressed but just in time he started to cooperate and we made it. It was lovely and the pizza was great.
Another banner day here! My birthday is tomorrow. DH usually remembers when I start getting BD cards. However, he had not mentioned it or even acknowledged the BD cards I have gotten, so I thought he would forget it this year. NOT!! Had to go to Walmart and when we got there he asked me when my BD was. I told him. He said he had to go "get something", so I led him over to the cards and pointed out the "wife" ones. I went into the next aisle and waited for him. He got a card - don't know what yet! Guess I'll find out tomorrow. Last year I got an anniversary card for my birthday, a Christmas card for our anniversry and a birthday card for Christmas! But, that's okay, it's confusing, since all 3 of these days are between 11/24 and 12/25! Even I get confused at times~
Happy Thanksgiving to all of you and may it be peaceful.
Happy birthday Vickie. Maybe your DH will surprise you and get a birthday card. One time I got a birthday card that didn't have wife or Sweetheart on it. I asked him if he couldn't find one with friend on! And that was before AD!
Vickie, Happy Birthday, Happy Anniversary and Merry Christmas. May you enjoy them all. Jean21, sounds like a great marriage. If a husband and wife are not friends, they don't have much to work with. I don't remember the last birthday card I got from Charlie, but the one I did not get sticks out in my mind. It was after he lost his ability to speak and he went to the little general store across the street and they didn't know what he wanted. I found out later through a series of yes and no questions that he had gone to get me a birthday card but they had moved them. He couldn't find them and couldn't ask. It is truly the thought that counts and I will always remember the birthday card I did not get, and why.
Yes, happy birthday, Vickie and many more. Update on stepkids: still a problem with their interference with the care aides I hired for DH. Final letter to them from lawyer. Then, if necessary, withdrawal of their visiting privileges.
We are surviving the cold spell. Did not get the snow Diane did up in the Seattle area. The cold air stalled over her until after the rain had passed, then it moved in. I had to walk hb through what needed to be done to keep us a little warmer. I am hoping, and I say hoping, the weather will clear up so we can get over the mountains Sunday. that warm Yuma sun sounds so inviting!!
Happy Birthday Vickie. I can't remember the last time I got a birthday card - way before AD days for sure. You are very blessed.
Happy Birthday and a good Thanksgiving to everyone as well, Vickie.. I' haven't posted in a while.This year things are so different. BUT I'll pick up DH and bring him to our son's home for Thanksgiving and that part will be somewhat normal. Our family outgrew our home more than a few years ago. If everyone came there would be about 35. Thankfully, when our son built his home..it was designed for large groups..So we've joined them for family doings the past few years.. This worked best for DH as well because when he got tired and ready to leave..we could. Anyway, my best wishes to you all.
About 28-30 (depending on non-relatives who're invited but not dependable: single mom and sons) for dinner tomorrow. Family brings side dishes and dessert. Grandson to come today to help set up. This may well be the last large group here. Good to be here, tho', because hb can always go to be if he's overwhelmed.
Last night he sat in his chair and talked quietly for about 45 minutes. I was sitting in my chair "reading" (listening). He rambled all over and made absolutely no sense. He wasn't talking to me. First time he's done that for that length of time, usually just a couple sentences of "quiet reflection."
Zibby, congratulations on the new great-grandson!!!
Vickie, Happy Birthday!
And Happy Birthday to my special friend tomorrow.....
And Happy Thanksgiving to all of you and your families!!!! May we celebrate and remember all we have to be thankful for even during this time while we deal with our spouses' disease. Whether you are celebrating alone, or with family, or with friends, remember you are loved!!!!
Happy Thanksgiving everybody. No thanksgiving here, I'm even missing the pumpkin pie that my American friend usually makes for morning coffee. It's become quite a tradition. But this year she went to London to visit her daughter who has a job there. I told her she couldn't do that, but she did it anyway! So our little Thanksgiving is postponed to a later date. Oh, well, it's a day care day which means I'll have a good day. I may just go to a movie.
The sun was out today but it was cold. Traffic kind of heavy in town and on the freeway in our remote area too. Tomorrow it is to be sunny but Cold again. Thanksgiving Day is a mix for me...on 25 Nov 1999 during the wee morning hours my dad died..so here we are on the day and date. To add to this, we got a call and DHs oldest half brother's son died yesterday..seems he had abdominal pain for a couple of days and delayed going to the doctor. Then yesterday my half bil got up at 4 AM to check his 44 year old son only to discover he had died. Now DH is obsessing about this and saying we need to send flowers tomorrow and money to help with funeral costs..both of which I agree we should do but getting him to grasp that nothing is open until Fri for flowers and we won't know how much to help out with until the autopsy is done and the funeral home will have a cost... Just what we need. On the brighter side, Cookie the new kitty is on the alert expecting Ebonie to chase her..the only thing Ebonie will do is hiss at her if she gets to close..Cookie is doing all sorts of things she never did in VA like getting on the counter tops and wanting your milk in your cereal..Cookie is only 3 and Ebonie is about 8. So we have a lively house and DH loves them both.