I am new to this website. My husband is 55 and has been diagnosed since 2005. I work full-time but I am in the process of going part-time this month. I only work 2 minutes down the road so I am home every day at lunch. My husband mainly has problems with the way he sees things. He thinks he is going blind. He is struggling with everything as far putting anything together, getting dressed. He just recently is having problems with short term memory. He has not forgotten anyone. He struggles with faucets, stoves, the washing machine, etc. I have such a hard time being patient. I try so hard and then I finally just want to scream. It is so sad seeing your husband go through this. He lost his debit card one day a few weeks ago and then lost his wallet with his license. He has a restriction to only be able to drive around town and no more than 45 miles an hour. I keep on finding excuses to not go and get another license. He mainly would drive to the health club and was going golfing. He now struggles at golf and at the health club. He has not been getting much exercise. I am hoping when I can go part-time, we will go and work out together and it might help him for a while. He is on Namenda, Razadyne and an anxiety/antidepressant. I feel I should be doing more for him. I just feel helpless. We have a 32 year old son, two daughters 29 and 22. The 29 year old daughter gets married in June and I am just hoping he can walk her down the aisle. He asked me last week if he was dying. It is hard going out to eat with anyone anymore because he doesn't see things on his plate very good and will set his food on the table or makes such a mess. He can't get his words out right and has such a hard time expressing things with friends. It is so hard not to be embarrassed. You finally just want to stay home. We can't play cards with friends anymore. He can't play games with the kids when they are all home. It is just such a sad disease. I just don't know how to handle this. I avoid going to the Alzheimers meetings because I don't want to hear what is going to happen. I just have to take it one day at a time. I know he needs someone to talk to that is going through the same thing. This sucks!!!!! Shirl
I just want to welcome you Shirl . We understand your feelings here and you will find your words echoed by many of us on this journey. It's a lonely existence but just being part of this online support group has made a great difference in my life. Keep in touch.
I know what you mean about not wanting to go to the meetings. Sometimes when you immerse yourself in AD talk, even for support at sites like this one(!), it becomes overwhelming, and you just want to forget about it for a while and do something to get your mind on other stuff.
I sure understand feeling alone. My kids are somewhat younger--15, 17, 19, 21--and they're wonderful kids, but I know they don't really grasp how lonely it is for me in that I still have their dad/my husband, but I don't have the kind of companionship they're seeking and enjoy with their friends and boyfriends.
I too, often feel that somehow I should be "helping" my husband more--to be involved, to not be bored...but what the heck do you do? There's such a limit. It sometimes seems such a useless, pointless exercise.
Welcome Shirl, Yes it is a long road to travel but we take one day at a time and it gets real rocky alot of times but we have to treasure the memories we shared with them and when our LO's are having a good moment, enjoy. We, as you read on, have our bad agitating times where you want to shake them but gotta luv them and know its this horrible disease. Trust in our Lord and HE will guide our path....and HE will never FORGET us. Our faith is the only thing that has kept me going, believe me I struggle hard but know I am not alone. Thanks for sharing, AND LOTS OF HUGS GO OUT TO YOU PAT
Welcome Shirl, It is a lonely existence and not even the best of kids can understand what this life is like. Our 36 year old son told me yesterday that it isn't too bad is it if Dad doesn't know who you are but still loves you. He doesn't understand how devastating it is to see that a person with whom you have spent 2/3 of your life no longer remembers the connection on a regular basis. You also know that at some point, they are going to remain in the not knowing you part oftheir brain.
This is a great site and you will receive a ton of support.
Welcome to my website. I am so glad you found us. As everyone said, here you will find support, understanding, information, and even some humor to keep you going. The reason I started this site was because I felt so ALONE - that no one could understand spousal issues except other spouses, and there was no place to go to discuss these issues. When you have some time - and I know that's difficult to find - please check out the "previous blog" section on the left side of the website. I can guarantee you will find many with which you can relate, and may be of some comfort to you.
Jan, I so know what you mean 37 years and we are left to feel so emotionally devestated, so lonely. But in defense of your son, I can feel he was trying to console you and make you feel better but not knowing what to say. Our kids do not know what it truly feels like, but they do love us and want us to take it better even though we can't. I know as much as my two children support me, sometimes I still think they feel like I am suppose to be WONDER WOMAN because I was always strong. I know you know this and I know we all have to vent . Thank GOD for this site to vent and support. Thanks for sharing and Hugs to you, PAT
You are right Pat . Frequently, I have said things that were meant to be supportive and then later, I am whacking myself on the side of the head wondering how I could have said something so insensitive.
Jan, Not insensitive, NOT, never insensitive especially since you were trying to help support someone else. Just making sure you know you are very much loved. HUGS PAT
I didn't think there was anyone else in the world going through exactly what I am going through in their 50s. I am 54 and my husband is 60. He was diagnosed with Alzheimer's at 58 and started symptoms in 2005. He is on Namenda and Aricept. I am working full time and always worried about whether I should start working part time to spend more time with him. Our daughter is getting married in September of 2008 and I am constantly worried about whether her father will be able to walk her down the isle. I can never relax. I don't read because he can't read. I know you know the feeling of not being able to plan any type of future. Yes, this sucks. I don't work 2 minutes down the road. How lucky you can go part time and be so close. I have an hour and a half commute one way. THe good thing is I have care for him in the home now and he has an excellent long term care policy. I am also very lucky in that my husband has become extremely mellow with this disease and laughs at everything. He does not have trouble dressing yet. Hey, you or anyone in this group can feel free to e-mail me any time at pollyp53@dishmail.net.. Thanks to you and everyone for sharing.
Hi PollyP, Welcome to this site, We all unfortunately know how you feel. Such a shame this AD disease robs us all. I am 56, my LO is 61 and was dz at 56. I had to quit my job after Hurricane Katrina and moved and downsized to be near my married children for help and support. So it's good that you have care in home for him and LTC is going to be so beneficial later. We were not able to get ins. like that because my LO had his 1st heart attack and bypass surgery at 32yrs old. But We have been so blessed to have him with us all these yrs. inspite of heart disease, prostate cancer and now this AD. This is the worst because AD robbed us of his ability to be him. Thanks for sharing Hugs to you PAT
It sounds like we are in the same place. My husband in 56 and was diagnosed in 2005. We have a daughter, 29, and two sons, 23 and 26. My LO can't really do much of anything. He gave up driving a couple of years ago voluntarily. He has spacial difficulties as you describe. Doors are confusing. He is having more difficulty lately getting dressed and I have to turn on the shower for him. By and large he remembers people though it can be hard to tell sometimes because he can cover very well. He generally greats people by saying Hey big guy! or Hello georgeous! He can do a little small talk so that at first you might not know about the AD but I see hime losing words more often now. Worse when he's tired. I feel like I have to take care of so much that I just don't have the energy or desire to entertain him as well. He doesn't do anything but listen to music all day. He can't go anywhere on his own. It's getting sadder all the time. I understand the embarrassment thing too. I used one of those alzheimer's cards for the first time the other day on an airplane. I went to an ad support meeting once but didn't care for it at all at this point. I was the only one there experiencing EOAD. I do appreciate this website very much. I hope it helps you too.
Hildann, It does sound like we are in the same place. My husband of 33 years basically sits and reads the paper all day. He wants to go down to the health club and work out but he struggles with the machines and gets turned around in the dressing rooms because of all of the mirrors. Have you found any groups that your spouse can go and talk to others that are going through the same thing. I am hoping to get the strength to have him dictate some letters to the kids before he is unable to do that. I just want to cry all the time when I try to bring that up. It comes in waves as to how I handle the day to day struggles. When I watch him for 15 or 20 minutes trying to put on his coat or tie his shoes. He can't understand how I can remember how to do this. He was always so sharp. I am so sorry so many are going through this. I probably need to start a journal and just type all of my frustrations away. Thanks for listening. Shirl
I have not sought out a support group for my LO. He is oddly content with his current lifestyle. He knows he has AD but doesn't really understand what it means in the long run. He still thinks he will live to 80 or older (he's 56). He doesn't believe he will forget who we are. I think in his case that ignorance is bliss. Like your LO, Polly, he is very mellow and extremely good natured. He just has no idea what's going on most of the time. He's content to be led around, told when to eat, etc. Fortunately I am able to work at home. I'm planning on getting a dog this spring to alleviate some of the loneliness in this house. It will also give him something to do (unfortunately more for me to do also).
Hildann, I can sure related to your post where you say that your husband tries to make small talk by saying hi big guy. My husband does this all of the time, only he will say, "If I made big bucks like you, I could afford this stuff." I am living day by day." Believe me I wasn't laughing earlier today. Is anyone having as much trouble trying to communicate with your husbands? Gosh, I got so frustrated today that I wanted to scream. I was thinking about making up some AD cards. I welcome any suggestions you all have on what I should put on them. Going out in public and socializing is becoming uncomfortable. Pat, thanks for welcoming me to the group. This is the only group I have found where there are people like me. Gosh, Hildann, your husband is 56. Crap. Anyone live in Northern CA? I wish there was a support group here for people our age with young husbands going through this!
Yes, socializing is getting more uncomfortable all the time. Fortunatley the friends who have stuck with us are great. Others just stopped calling. The card that I have says "The person I am with has Alzheimer's Please be patient Thank you" I have only used it once so far.
I have cards like Hildann mentioned. I ordered them from the alz. store on line. They are very colorful and have information on the back regarding Alz. association. I write down at the bottom of the card, "I am his wife." this really changes the whole "uncomfortable" thing and people become very, very nice. I used them about a year ago everytime we would go anyplace. It's so funny, at first I would be afraid that my DH would catch me using one and get upset, but he never, never noticed. I used them at the eye Dr., the pharmacy, restaurants and many, many places that we would go. Unfortunately, he has advanced in the disease and rarely goes with me other than to the Dr. and church. He can barely walk and uses a walker and even with a walker, it is really tough. He is getting physical therapy twice weekly, but it is not doing any good in my opinion. We go back to the neurologist next month and I'm going to ask for another MRI. Anyway.......THE CARDS REALLY WORK WELL and they are really cute.
Pollyp, Communication; ugh! I just got back from 2 days on the road with my LO visiting out of town family. Stayed at a motel. Total trip 440 miles of fun, fun, fun. At times I thought I was losing it. It was so hard. He played with his GPS and told me almost mile for mile how many miles was left there and back which most of the time he was looking at wrong thing and hit the click, click,click buttons till I wanted to throw it out the window..I know it is not his fault but I still get frustrated..He got over tired and made forgetting much worse. My fault trying to do as we used to. I could have used those cards. It is very hard to communicate all the time. Everything I say he twists around to where I am misunderstood and you can't try to straighten anything out, it only makes matters worst .But gotta love him .But gosh, how I hate this AD. Got to go, we both need sleep. Hugs to all, PAT
Hildann Yes We too have one couple; friends that has and is always there for us since 1979. All the others, well, act as we were in the past and thats it. But I know I haven't always done right by them either. Stress can cause uncaring things. Thanks for sharing PAT