I invite you to log onto the home page - www.thealzheimerspouse.com- and read today's blog by me and an article by "bettyhere", our very accomplished member who is an author, columnist, and website creator.
After you read the blog, please post comments and ideas for raising awareness of early detection here in this post.
There is another excellent thread on this board about early symptoms not recognized as AD - "Early AD Symptoms secondary to memory loss." I have brought it to the top for any new members who have not contributed.
The more we learn and the more educated the public and medical profession are, the better we can cope.
Beats me how we are going to "raise awareness of early detection when I have tried "Personally calling 4 old acquaintances or family with a AD spouse and they won't even return my calls". The last one being last week. Do they personally have their head in the sand, in denial or what is their problem??
It seems to me people are trying to hid the disease because they are embarassed and ashamed...
Imohr - I agree that sometimes it seems as if people are trying to hide the disease. Our attitudes and acceptance of our spouses with the disease go a long way to helping others accept it.
Joan, Bettyhere - I definitely vote for early detection of this disease. When I think of how much better I could have handled what was going on with him if I had known and understood it better earlier, I get angry that there was no test that could have been given to him that would have definitely told us what was wrong.
I think that the test for this should be just part of the normal blood tests that are done at a physical.
There are some problems that do need to be addressed if a person is diagnosed earlier. Many people think that a person becomes "stupid and incompetent when they are diagnosed". The public mindset needs to change that problems occur after a person has reached a certain point in the disease.
Funny, it took me awhile to tell anyone about AD in my husband, but I have found such a huge amount of support from our friends since i admitted it. Speaking of early detection though, I'm remembering being concerned about losing my DH long before he was diagnosed. i guess I put it down to his not having a good sense of direction, but I remember one time when we were in Santa Fe, NM when he was missing for 2 hours because he walked in the wrong direction, and never realized he should have turned around and retraced his steps. Our friends drove up and down the avenue until they finally found him wondering around, That had to be at least 10 yrs ago. Those are the kinds of signs I should have realized that we needed to address.
Chris, I had the same experience. We drove a very long time (20 hours) to a resort we were staying at. It was dark, late and we were exhausted when we got there. It was one of those large confusing places in the dark. He put me on the sidewalk with our luggage and said I am going to park the car. I could see him park the car, he walked back towards me, I saw him take a wrong turn and he was gone. I waited a quite a while to see if he would pop out of the bad turn and he didn't. So, I got all the luggage to our room and went looking for him. Didn't find him.
I ended up calling the front desk and started the conversation with "this may sound strange but I have lost my husband". The woman that answered had a sense of humor and asked me "do you want him back?"
The funny part was he was able to get to a phone and also call the front desk, he even knew our room number, they told him "your wife is looking for you". They also came and got me and took me to get him so everything worked out okay.
Truth is that I knew something was going on with him before that incident, but it was a very scary timeframe that was at least lightened with some humor.
There are some things we can never understand. Would it have made a difference if we had known days, months, or years, ago - nothing would have changed the outcome? We would and will have to continue to endure the years of heartache. I recently purchased a book from a used bookstore called “The Dummies Guide to Alzheimer’s Disease”. Oh how I wish I had this book years ago. This book is so clearly written that anyone can read and understand the contents. Am I alluding that we are all dummies. Not for a heartbeat. Only that we are all traveling a path that we never chose to travel and that we all need all the help we can get.
I can only tell and retell my story in hopes that maybe it will help someone. When Ron and I were married – 15 years ago – I thought I had met and married the most perfect, wonderful husband anyone could ever hope or dream about. Here he was everything I had ever hoped for and more all in this one simple man. It takes a good man to take on a Grandmother of 11. He tried for 3 years before I said “Yes”.
He was a master carpenter and worked long hard hours on both commercial and residential building. Finish work, kitchens, bathrooms, remodeling, and additions were his life. He enjoyed everything he did and did more work for free than he ever collected money for. Why and I telling you this – simple, he had one problem that I never thought about for an instant. He could not tie his shoes.
I never thought a thing about this until I read this book. He always bought slip on shoes or casual shoes with Velcro. OK – I can live with that. Every morning before he left for work I would check to see his work boots were tied. Much like you do before a child leaves for school each morning. We talked about it now and again – he always joked that he was absent from school the day they all learned to tie their shoes. I didn’t put a lot of stock into it – I ignored it for the most part.
Years later, the first Neurologist we went to commented on his shoes with Velcro – asking him why he wore that type of shoes – he only said – I like them because they don’t have laces. When she asked him to remove his shoes – he refused. I thought it a little odd – but life went on. He refused to go to that Neurologist again – we found another doctor. His Mother and siblings just chuckled when I asked why Ron couldn’t tie his shoes – saying he just liked me to do it for him. His daughters’ said they didn’t know he couldn’t tie laces – but he always bought and wore slip on shoes.
One of the first things that jumped out at me in this foolish book I bought is that this is one of the earliest signs of dementia. Who would have thought this could be fact. Had I known this, would I have still married him? I think the answer to that is YES. We shared a lot of wonderful times and years together before things started to really become apparent. His daughters’ tell me now that maybe this inner confusion may have led to many other problems – long before I ever knew him. Maybe some of this caused his first marriage to fail – I don’t know and I never will. I often wondered how someone could have ever left a man as wonderful and caring as he was. I never heard a bad word about him from anyone, nor did I ever hear a bad word from him about anyone else.
There are some things we can never understand. Would it have made a difference if we had known days, months, or years ago? Nothing would have changed the outcome. Many thing we accept as ordinary could have been early signs, would this have changed anything? I doubt it.
We all have to learn to enjoy what we have, while we still have it, and not keep asking ourselves what if? Early diagnosis is essential with any disease – there are a few medications that can slow down the inevitableprogression – but just take one day at a time and enjoy each and every moment you have with your loved one – the time can be fleeting as a butterfly – but oh so wonderful to remember. One day at a time – and try to appreciate all we have been given.
'God determines who walks into your life....it's up to you to decide who you let walk away, who you let stay, and who you refuse to let go.'
rbosh, thank you for sharing your wonderful story. I don't know about the tying of shoes being a dementia problem. Hard to tell but we do look back and sometimes grasp at straws. I know a smart 13 years girl who wears velcro fastened shoes because she has never learned to tie shoes and I have a granddaughter with a Masters Degree in secondary education and last I heard she couldn't tell time by a regular clock. She always used the digital ones. One wonders why they wouldn't try to learn.
Yes, that's the point. People ask me why do I think DH had it for decades; they think my answer should be that he began to forget things--but that's not really the early signs, not at all. He was a confirmed workaholic and began coming home early from work--like 4 or 4:30 instead of 9 or 10. That was a dramatic change in his behavior, but never did I think it was AD. And when I tell that to people, they don't see anything wrong. I noticed a change in his driving, but I didn't connect that either. He could tie his shoes, but there sure were other things and I just didn't know.
As I said, my first hints, as I look back, were that he got lost. I just thought it was because we were in an unfamiliar place. We moved here 10 yrs ago, DH was 75. He has never learned where anything is here. He was supposed to meet his men's group at a particular restaurant, and I took him there during the day, with him driving, this was when we first moved here, and he had not been dx'd, but that night, he got lost going there, and just drove around aimlessly. But, I thought it was just because it was dark and he wasn't that familiar with the area. Now I think about it and realize, I knew the area, and we moved here together. Now he constantly comments on how well I know the roads, Well, heck, we've lived here almost 10 years, I hope I know the roads. Funny, I just didn't realize that was one of the signs.
Both the shoe tying and the clock thing can also be dyslexia. I taught my niece how to tie her shoes after everyone else gave up. I used a weird method and not the one I use, and I saw her tie a shoe decades later and it was the same method I'd taught her. I couldn't tell time on an analog clock for years. Once I started using the digital method to say the time, I no longer had problems. This whole 10 to and 10 after thing is just weird! <grin>
It isn't that I didn't want to learn. It was that I couldn't learn. And that is also what is going on with dementia. I found out during cognitive therapy that he COULDN'T learn.
I'm beginning to think that dementia and low-thyroid disease have some things in common. In both cases what is going wrong can be a whole bunch of different diseases, and the people suffering don't necessarily have the same symptoms as their neighbor with the same disease.
rbosh, that's quite fascinating -- I've never heard that before. My husband has preferred slip-on shoes as long as I've known him. I figured he just liked that style ... I can't remember if he's ever had laced shoes. The last time he needed new shoes (long after he'd been diagnosed), the store didn't have what he wanted, and he told me he liked one of the laced styles -- but he was totally at a loss as to how to tie them, and started getting upset, so I quickly hauled him out of there to look for another store that had loafers.
Like Bettyhere, the very first thing I consciously noticed that was strange was a change in his driving, but I didn't understand what that meant until after he'd been diagnosed. Unlike her husband, there hasn't been a big change in his personality, thank heaven.
My husband was 50 years old at diagnosis, but like all of you, I look back and so many things are now explained. Things progressed very slowly for 2 years prior to diagnosis...stereotypical stage 2 scenarios. It's not that that all of a sudden he got worse; I think all of a sudden I realized how much worse he had gotten and how much I was compensating for him. Most of our conversations revolved around how tired he was and how he didn’t find joy in anything. The tone of all of his conversations became very pessimistic to the point of being fatalistic. No matter how much I tried to get him to see something positive or point out something good, he would shrug it off and make a remark such as, “It doesn’t matter, it won’t last…What’s the point, nobody cares”, etc… It got to the point where he would not make any decisions beyond what clothes he was going to where that day. He wouldn't decide wher or what he wanted to eat, what game to play, TV show he wanted to watch or even a topic for conversation. He was never one to help out around the house very much, but the chores he used to do habitually w/out reminders or asking, he let them go or did them halfway. He never questions our finances and is content to let me handle it any way I see fit. There were changes in his food preferences. Meals I have prepared in the past that he raved about, when I fix them again, he sheepishly admitted he didn’t care for it (that day). When I tell him that he liked it the last several times I fixed that meal, he has no memory of having eaten that dish before.
Another eye-opening moment came on Saturday, 9/30/06; it was my birthday. Earlier in the week on Tuesday, I met my mother and 2 friends for a monthly dinner we have. I always make cakes for them when we meet during their birthday month. This time they surprised me with a fabulous special order cake. I took half of it home to shared with Glen, mentioning that it was my birthday cake from my friends. On Friday, my co-workers celebrated my birthday with two cakes and two different kinds of ice cream, a special lunch and a nice card. That evening at dinner when Glen asked about my day, I told him what my co-workers had done to celebrate my birthday. He then asked me what I wanted to do to celebrate my birthday (the next day). I told him nothing fancy, simply dinner tomorrow night with him choosing the place would be great. I had to remind him we couldn’t do it at lunch because I had some business to take care of in the morning for a couple of hours and we had our friends Larry and Jodie’s wedding in the afternoon. At the wedding reception, on the afternoon of my birthday, Larry and Jodie both made a big deal twice during the reception of wishing me a happy birthday and telling others nearby that today was my birthday. Glen was standing right next to me and never said a word. He never told me happy birthday that morning. This was not like him. He has NEVER forgotten my birthday or our anniversary. I kept thinking, maybe he has something big planned later in the day. Other friends and family called earlier in the day to wish me well and gave no indication that anything might be planned. There was no indication of a surprise party, but he literally did not acknowledge my birthday. After the wedding reception, he left to go to the radio station (where he worked at the time) to pre-record his Sunday program, stating he wouldn’t be long, maybe a couple of hours, but that we would go out to dinner afterward. This was about 4:30 pm. At 8:00 pm, I still had not heard from him. At 9:30, he called saying he was having trouble entering his program in the computer and couldn’t remember how to do it. He said Eric (his boss)stopped by the station on other business and showed him how to do it, but that he had other things to take care of and would be a couple of more hours. He did not get home until 1:30 am. He never acknowledged my birthday or missing dinner. The next morning we got up and went to church. On the way, I mentioned to him that we were meeting my mother after church because she wanted to take us out to dinner. He still never mentioned my birthday. It wasn’t until after church when we got back in the car when started to ask if we had any special plans today, but quickly caught himself adding “besides having lunch with your mother” to complete the sentence. When I said we had no other plans, he asked why my mother was treating us dinner and very quickly realized as it was coming out of his mouth that he added “besides for your birthday”. But then he stumbled around verbally trying to figure out exactly which day was my birthday. It wasn’t until I gripped the steering wheel and glared at him that he realized he had missed my birthday. He began to cry.
As I looked back over the diary I kept, summarizing the 2 years prior to diagnosis, so many uncharacteristic things were suddenly explained.
My nephew taught my daughter how to do that when she was about 6 using an analog clock, but once there were digital clocks around she used the digital method of speaking the time as her preference. I taught a niece to tie her shoes at about 6.
I actually think that Kindergarden and first grade is the normal time for kids to learn how to do either or both of these things, but learned of a badly disabled child who toilet trained himself by using a clock to tell his caregivers he needed to be taken to the bathroom at 4. He had been put into a home for retarded children by parents who abandoned him and the aides who worked there literally got him out of his situation within 6 months, by going to first the doctors and then the court system. Meanwhile they took turns taking him home for the weekend until one of them was made his foster parents by the court.
As for adults with dementia, my husband began to tie his shoes permanently and not untie them. He uses them as if they were slip ons. And I don't know for sure if he can still tell time. He certainly is not oriented as to day of the week or month of the year.
For us, one of the hardest parts of this whole thing was trying to get a diagnosis. We grew to hate that mini-mental status test, because to both of us it was terribly obvious that something was wrong, but DH would score a near-perfect score on that test. He was fired from his job because he couldn’t remember anything, but all the doctors would say was that they thought he was depressed, so he was eventually on two antidepressants and sleeping medication. He continued to decline, and the sleeping medication made him even worse than he had been before. The first neurologist believed absolutely nothing that we told him. He said that he thought there might be a problem, but made no diagnosis and no referral. Even when DH would ask me over and over about something, the doctors said there couldn’t be a problem, because he was self-aware about the problem. The first doctor to realize what we were dealing with was not all the neuropsych doctors or Alzheimer’s specialists, but our own family doctor, because he had been seeing DH for years, so he saw the differences we were trying to tell the other doctors about.
DH was finally diagnosed at age 54. We had been trying to find out what was wrong for at least two years before that. Twenty years before that, there had been strange behavior, like stopping at an intersection and looking both ways, when there was neither a stop sign or stop light. Or checking the mail outside the front door, and then going to work and leaving the door standing wide open. I just got used to things like this. But as the years passed, I felt like half my life was following him around and making sure that things were taken care of. Long before diagnosis I felt like I had to constantly be on guard all the time, or things would fall apart. Looking back from where I am now, I realize that I was right—things would have fallen apart without me reminding (and reminding, and reminding) and fixing and doing things myself.
The changes in the marriage were really hard. We went from having a loving marriage and being concerned for each other to him being the “boss” and me living to expedite his life. He was on the road all the time, and when he was home, I wasn’t supposed to bother him about anything. He was withdrawn and cranky. Once he actually ran into me while walking through a room, and just continued on like I wasn’t even there. He could still remember to call home to check on business matters, but when I had an MRI to see if I had a cancer recurrence, he completely forgot all about that—and then couldn’t understand why I was upset when I reminded him that he had said he would call me when I got home from the doctor. He was so oblivious about anything that was going on with our lives together that I seriously thought about divorce. I realized how much things had deteriorated one morning when someone tried to break into our house, and even though my husband was asleep about 15 feet away, it didn’t even occur to me to call out to him for help.
But he was in his mid to late 40’s when all this really started to get bad. How was I supposed to know dementia was entering our lives? It took the doctors almost a decade to figure it out. Meanwhile our marriage and DH’s career took a nosedive.
We’ve read a lot about how early diagnosis is vitally important, but how in the world are you supposed to get that diagnosis? We saw doctor after doctor, and had test after test, and still nothing. We used to say that by the time a doctor finally figured this out, a taxi driver could have diagnosed it. (Actually, at DH’s last job, a couple of people joked with him that he forgot so much, maybe he had AD.)
Sorry that this is so long, but the whole issue of early diagnosis is still painful for us.
I am in that place you talk about spending your life going behind him to make sure things get done and are being taken care of. I am always waiting for the next thing to happen...so much so that I can't enjoy his good days. I am always bracing myself for his bad moments/days because they can come on so suddenly.
Does anyone have any suggestions on how to relax and enjoy the good times? I know they will become fewer and farther apart. I don't want to waste our good times worrying about when the next bad time will descend.
A suggestion for those with shoe lace issues. Several months ago I found these special shoe laces called Knotty Boys. They are long, very elastic and have little knots about every inch. You lace them like you would any other shoe lace and tie them so they are comfortable. The knots in the laces keep them from untying (unless you want to). Once you get them comfortable you never have to untie your shoe again. When you slip your foot in, the elastic in the laces stretches just enough to allow your foot to slide in, but once your foot is in place, the shoe fits properly without the extra give of loose laces. In essence, they turn your lace shoe into a slip on. They can be found in most shoe stores. I wear special shoes called Z-Coils and any store that carries these shoes have the laces.
I've been working on the trying to relax and enjoy the good times when we have them. Frankly, this particular normal has been around long enough that I've gotten comfortable with it most of the time.
I'm using prayer and meditation. I'm using affirmations. I remind myself that my attitude is my decision. How I react to things is something within my control. And I choose to be happy, healthy and strong. I choose to be aware, thoughtful and wise. I choose to be kind and patient, calm and serene. And I choose to be grateful for the blessings in my life.
This kind of stuff builds over time and it works if you work it. Does it work ALL the time? In ALL circumstances? When things are really bad? NOPE.
But it does seem to help me remember when something good happens. Because I choose to be aware. I choose to remember that I've got people in my life who love me. That I've found this wonderful forum where nothing I saw is all that new because someone else here has experienced it too. I'm not nuts. It is all real. I choose to remember that I have interests that have nothing to do with my husband, and those interests fill my life with joy. And I've chosen to remember that it is OK for me to have something happen that is enjoyable. And to make time for me to enjoy something just for me.
Starling is right attitude makes a huge difference.
I let myself enjoy the little things - a crisp fall morning, the way certain trees are changing colors, watching my two dogs have a play fight, watching one of the dogs (80 pounds) play with one of my 4 pound kittens, watching the kittens play together, a special smile from my husband who no longer smiles all that often, a fresh apple, a good book, a kiss from my husband and he asks for more.
One of the biggest helpers is coming to this site and realizing that I am not alone in my struggles in dealing with this awful disease. There is almost always someone who has gone through the same problem or is currently dealing with the same problem.
I am still working on the relaxing part, but have found that an evening with friends occassionally makes a huge difference. Somehow being out in the "normal" world helps me to realize that there is more to life than Alzheimer's.
We are having an amazing, glorious, once in a lifetime fall here. The color is something that will stay with me the rest of my life, like the aspins in the rain more than 20 years ago in Arizona have stayed with me.
Yesterday I took my car in for one of those warning lights you sometimes get. I talked to a stranger, a woman a little older than me, in the waiting room. I logged it as Human Contact.
A couple of weeks ago some neighbors fixed it so I could go to the community ladies lunch. They held it at a very nice golf club. Had a wonderful time with 35 of my neighbors. I logged that as Human Contact and something I'd done for myself and something someone else had done for me.
This fall has been glorious all over New England, I think. Today I got away to the zoo - my daughter was home so i didn't have to hurry, and it was SO LOVELY. It lifted my spirits more than anything has in a long time.