Stuntgirl, You have got to have one of the worst situations of anyone I know. It's bad enough when they are with us and we try to cope but doing it long distance against the family and a nurse- my God, she works with dementia patients?? I find it so difficult to find compassionate people these days. It permeates everywhere-the bank, stores, drs office, etc. I pray everyday for everyone. Shadowbaby, I remember well I felt when I first visited this sight. My God. It was a miracle. When you are feeling down, there is always something you read that gives you a belly laugh!! We so need to laugh. Try to read some of the old blogs. You will learn alot about these womderful people and realize more and more everyday how much of a life saver they can be. I was having a really bad day today, it was pouring rain and I had to talk to someome. When I got home, I immediately went to this website. My "friends" have since gone away and I'm tired of family. They are not the best support system all the time. But this web site is. I entered my comments under a different discussion half an hour ago crying all the way through and now, my tears are done and I can refocus. I know you will become as "glued" to this site as I am. Good luck and "write " often. And God Bless Joan!!!!!!!!!!!!!!!!!!!!!
Yes, it is a wonderful website. When my husband was first diagnosed in 2003, we decided to let our family and friends know in order to get support. Well, that was our (my) first mistake. All of a sudden they acted like my DH had no hearing or mental abilities that he had prior to letting them know. Then I contacted a person from our church asking if she knew anyone with AD so we could possibly give each other support. That was my second mistake, the spouses did not want anyone to know they had AD so the wives (like myself) were sworn to silence and secrecy. The so called AD support groups in my area are no longer in existence. That is why I am so grateful to you all. Sometimes I have to remind myself that this is no about me but about the care of my DH. If I look too far ahead, I can't take it but if I do the day at a time, I get through with God's help. People smile and are polite but that does not take away the lonliness and boredom. I am so tired and know that that adds to the problems. Everyone tells us how important sleep it but how do we get it? My DH used to talk about his crowd scene part in the movie Mad, Mad World. I finally found a DVD and we watched it together. I had never seen it before but it was so funny we just couldn't stop laughing.
GOOD IDEA, mad mad world!! was your husband in S. California then?? I'm always looking for videos he'll like. The more he watches, the more he seems to really enjoy them!
Brindle, a lot of us here have talked about how we become adept at recognizing AD in others.. if you see someone at church that looks a bit iffy, you might try letting their spouse know that you're dealing with problems something like theirs.. without letting on that you have recognized anything..
briegull, I have tried that about 3 times and I know the spouse had AD. They never called me back. I don't know if they didn't want to accept it, were in denial or what. Really floored me and now I am almost afraid to approach anyone. Looking back, I guess I was the same way. I remember people mentioning to me did he have AD and the Neuro at Cleveland had told us he DIDN"T and that is what I told them. Later we found out he did. Everyone is their own person and we have to accept them for what they are.
You're probably right, Lois. As you know by now, I'm pretty much a let-it-all-hang-out person so in my various circles of friends, everyone knows we're dealing with it - and I've had several people approach me to talk about their relative. It's still taboo, though, in many places, isn't it! How absurd. It's not like our AZ people can HELP it!
I am glad she said that almost all of you seem to be 'saintly & tolerant'. That is the same way I feel when reading your postings and I wish I could handle this situation better. I do pretty good most of the time, but, I still get my feelings hurt, get angry sometimes and occasionally blame her for something I know later that she can't help. I feel like I don't measure up to your care and understanding of the disease and your patient. But, I'm trying to do better.
Dean, I am not one of the "saintly & tolerant", but some of the others are. Sounds to me like anyone who tries to help theirself and their spouse by reading and contributing to this web site is to be much admired. You fit in that category very nicely. At least we are trying.
We're all human, and we all lose our cool sometimes (often?). We can't help it. It's what the disease does to us. Don't get down on yourself. Lately I've stopped fighting and losing my cool simply because I am so worn down from all of it. I can't fight it anymore. Alzheimer's Disease will always win.
thats exactly what happens, you put up a good fight thinking you are gaining on the disease, making some advances, seeing improvements, then the reality smacks you back down and lets you know it was only a temporary fix. after a few times of that you get used to the idea that nothing you do is going to alter the course of the final outcome or the path in between. hope-no hope-stress-anxiety-handwringing-its relentless and extremely draining to continue the ups/downs cycle-the one thing that is sure from here on out is that there is no consistancy about anything anymore-there are no saints or tolerant persons but the same agonizing persons who have gone thru the sacrifices-hairpulling-tantrums many many times just like everyone else. for me, after the constant drainings took just about all i had left, i had no choice but to try to see things in a different perspective for my own wellbeing. so i gave in and made myself realize that this disease is going to win and will take the ultimate prize in the end from me. but how i get to that point will be my own choice and doing. at least that much i do have control over. so i chose to see humour and enjoyment in everything that DH can offer me at this point as i know all to well the time will come when i will want to do it all over again at any cost. divvi
I wonder if it is outright denial or due to the way they were raised? My MIL and sister would not even entertain a support group. They were brought up in an era where you didn't 'flaunt' your personal 'laundry' - you toughed it out. That is what killed my MIL - she refused support of any kind. It would have been disgraceful and weak to accept. My sister feels much the same way - you don't go to a support group. Those are for the weak - our mom brought us up to be strong, independent women (which is very hard on marriages by the way).
Me - the best thing I ever did in the 90s was go to counseling. It saved my life. I was tired of battling the demons aka depression by myself.
To Dean, I feel the only way you could ever go through this and NOT get your feelings hurt would be if you didn't have any. Don't get swayed by trying to get it right everytime. You won't. Not to worry, though cause it gets to be like riding a bike after all,sort of instinctual. Say to yourself "so what?" and step back and breathe. There's a song called "so what?" by Pink you might like. No one here is an actual saint. Not yet anyway. Ha!
Well, this strong, stoic person here got her feelings really hurt this evening. Hate to say it but I was really injured. I've told you that I have macular degeneration. It is getting worse. I don't drive, can barely read, TV is difficult and I can't see faces clearly. I'm really a mess but I do try to cope and I really try not to complain. Who wants to hear it.
However, this evening, I was trying to follow the 11 o'clock news. DH turned a really bright light onto the screen (why I don't know.) I asked him to turn it off so I could see what was going on. He got uppity and said "well, if you'd just open your eyes, you could see better." Then he turned the lamp to my face. It actually hurt my eyes.
I got furious with him and I got up and pulled the plug on the lamp. And, it went on from there.
Right now, I'm kind of tired of trying. He keeps repeating how much he loves me and how he is so glad he found me and he goes on and on. It's embarrassing. He tells the same thing to everyone we know.
I'd really like for him to be quiet for a couple of hours and leave me alone.
There, how''s that for being saintly. I feel pretty rotten about it.
Mawzy, it seems sometime the disease just makes them want to hurt the one they love most. I can understand you being hurt and I don't blame you one bit. I am glad you pulled the light plug. Be sure and keep your cell phone in your pocket and be careful. They are capable of hurting us. My DH doesn't complement me very often. To me or others. Do you have a private place you can go in your home when he is irritating you?
You and I seem to be the only unlucky souls to be awake tonight. My DH just took his bath and after I helped him dress he is now in bed with me for the rest of the night. He does lay quietly and I have my bedlight on and my laptop. Take care......
((Dean)) we all have our down days when we just can't live up to sainthood. Personally, I decided the world had enough saints and gave up being the martyr. *wink . Alzheimer's sucks, absolutely sucks!!! Not one damn good thing about it. Not one! And I am flat out tired of pretending I am strong enough to deal with it, or even want to. Oops, I think my halo just slipped a bit. LOL
((Mawzy)) Try not to beat yourself up. He has forgotten. Cut yourself some lack and just know you are doing your best!((hugs))
AH>>>>>>>>>>>>>>>>>> Have any of you enjoyed the peace of silence? No noise, no tv, no voices. Maybe a bird ootside your window or the sun coming up. Just plan and simple SILENCE!!!!!!!!
With the last couple days being nice (80) we have slept with the window open. We have a hedge of arborvitae behind us and there are lots of birds that live in them. Plus we have 4 beautiful chickens (momma, dad, 2 grown sons) that run around the three yards here, plus the guinea hens. The guinea hens love to squawk after dark for about an hour and in the morning. Momma hen must be laying on eggs again so one of the boys walks around squawking from early morning until dark - dad didn't train him right!! The birds go from morning to dark. I woke up about 4 for a potty run and when I got back in bed it was silent!! The only noise was the air purifier running. It was heavenly and delightful the quiet.
My hb is nowhere near most of yours - just repeating and forgetting and having to tell him again. I think that is why I stay up late (after midnight) cause I don't have to worry about him telling me something he already has many times before or explaining why something is being done. Or listen to him get angry at what is going on with the government. (he never use to even comment). Even though the TV is on, there is still 'silence'. I am on the computer anyway reading here or playing on pogo.com.
Mawzy, you're sweet My dh has macular degeneration to and is legally blind, etc. Oh, and you go girl! I'd have pulled the light cord too! If you get them to believe you won't take that kind of stuff on a some kind of instinctual level (stand up for yourself ALL the time) they get it for a good while and it's not so much work. I admire that kind of gumption.
Stuntgirl, When I read what that ignorant nurse said to you when you asked her to inquire about meds to quiet your husband ("She said she was sorry, but there is no pilll to cure how he feels about me"), I felt enraged. If you have the strength, I would report her to the hospital administrator and to the nursing supervisor. This woman should not be allowed to treat families of patients with dementia this way. She needs to educated, reprimanded and watched. I understand that you may not have the physical and emotional strength to fight the fight and if not that's so understandable, but if you do, you would be doing a service to yourself and others. Imagine how many other loved ones she will ride rough shod over if she isn't "educated." I'm so sorry that you were treated this way.
This is from today's Alzmail. Though I would share it with you. I know the feeling - Ron and I use to dance all of the time. Occasionally now when music is playing he will hold my hand and try to keep the beat. When he first went into the NH he and I would dance when the music played. It kept him contained for awhile and also stopped him from wandering. Oh how I wish we could still dance, ot that he could still hug me. Talk about being lonely - I feel like I invented the work
The Songs They Can't Forget
Tom was a wanderer. When his wife, Elsie, came to visit him at a care unit for patients with dementia, he would give her a perfunctory kiss, then wander off through the rooms and stare out the window. Elsie tried to walk with him and hold hands, but he would shake her off, leaving her heartsick.
A music therapist at the facility, Alicia Clair, was searching for ways to help couples like Elsie and Tom connect. Ms. Clair asked Elsie if she'd like to try dancing with Tom, then put on some music from the '40s - Frank Sinatra singing "Time after Time." Ms. Clair said recently, "I knew Tom was a World War II vet, and vets did a lot of ballroom dancing."
As Sinatra began singing, Elsie opened her arms, beckoning. Tom stared a moment, then walked over and began leading her in the foxtrot. "They danced for thirty minutes!" Ms. Clair said. When they were finished, Elsie broke down and sobbed. "I haven't been held by my husband in three years," she told Ms. Clair. "Thank you for bringing him back."
Read the article at The New York Times' New Old Age Blog.
So many wonderful comments and bits of information. I too tried contacting people at my Church who had DH with AD. But no one wanted to talk as their spouses got angry if anyone found out about them. I could relate to that. Years ago, there were at least 4 support groups in this area and now there are none. Maybe for the same reason as above. I know my DH goes everywhere with me these days. Yes, I wish we could dance like we did before as well. I try to make up songs and put on his favorite music during his nap time. He laughs at me and that is a good thing. My captive audience. Friends and family and neighbors all say nice things but no one visits. How is DH? No one ever says "how are you" can I do something to help? Yes, I have asked family for help and they said "yes" but it does not happen more than a couple of times a year. My DH will be 66 this weekend and has had AD for 7 yrs. You'd think I'd be used to it by now. I wait for the night and then can't sleep (even on the sofa). Of course with it being 104 deg during the day, the house and outside don't cool down enough to be comfortable. I am grateful that DH doesn't wonder off nor get violent.
brindle 7 years is a long time to be alone. My friends are all widows in my community. When I get really down I realize that my friends all became widows in their 40's with children still to raise. They had no warning or time to prepare. Doesn't make me less lonely but does snap me out of feeling sorry for myself. Doesn't mean I'm happy either.
Before I got married, nobody I knew lived alone. We all had roommates. In college, we lived in dorms, apartments, or fraternity houses, then in summer, home. Even after, I had roommates in Palo Alto, San Francisco, and San Jose. Nowadays, and for several years back, people seem to like to have their own place alone. I could never understand that. I experienced that when I was in the Foreign Service in Geneva for about 4 months before I resigned. I hated being alone....and still do. When DW gets placed, I am going to use the house like a motel, and be out and about all day and night as much as I can, volunteering, partying, or even working (if anybody hires geezers these days).
I went from high school to marriage also. Spent very few nights alone and it will take a lot of getting used to. I am not into partying and at my age I tire easily so I see myself as being alone most of the time.
I also went from high school to marriage, graduated on Monday, married on Friday of the same week. The first night Charlie was in the nursing facility, I counted it in my head. It was the 7th night of my life that had ever been totally alone. The first 6 were all within the past year when he was in the hospital. And yes, TJ, it does take a lot of getting used to.
Imohr, when I said partying, I meant the kind that is age-appropriate, like party bridge, or a sedate cocktail party, not anything wild or loud or late. Hey, I get tired too!
The few times we have had people at the house, it was not very comfortable. My DH had to monopolize the conversation which was difficult because he had so much trouble communicating. His best friend is now in a home and not doing well. Over the last couple of years, my DH had black outs (no warnings) and prostate issues so going places was unheard of. Now both issues seem to be under control. We are pretty much stay at home people. By the time I mow both lawns, clean, do laundry and take care of DH, I really have little desire to go anyplace. The market and Wal-Mart are our big outings! I try not to feel too sorry for myself. Actually, I feel very fortunate. The heat really gets to us (104 again today).
I lived on my own from the age of 18 until I married at 28. I am so thankful that I had those 10 years and I know I can make it on my own. At 28 you were an old maid and my family had given up on me ever marrying. We have been married now for 53 years and they were good years.
I don't know which thread it's on, but someone, and I don't remember who, described renting rooms to college kids and that helped lonliness. As I recall it sounded like they became like a family group. Someone here may recognize the thought and know who, what, when, etc. I have caregivers dementia.
I went from eldest in a family with 7 kids, to living in dorms at college, to my own apartment, when I started my first full time job, in Fall, 1971. Took a lot of getting used to. QUIET!!! too much. Filled time with work, and got involved with a social group. Chores filled some time, but the apartment was still too quiet. Got 2 kittens. Eventually moved to different apartment; met and married DH(in Feb./in August). Never been ALONE since but the "alone" of now is nothing like the "alone" of then. There is no real "look forward to" now. Back then there was always something coming--"to look forward to". Now, I wish and dream of the time when things change again. When that happens, DH will have "gone into the light" and ironically, I'll be alone again. But I have things in mind already, "to look forward to."
I went from school to married so never lived alone now I am alone and don`t like it, way to quiet at night, it`s not so bad in the day and I can do things I have always wanted to do but it still is hard at times. Gail
I have My sister, niece and nephew living with me. But home is not home without Lynn here. I feel alone all the time. There is being alone, and feeling alone. I can be in a whole group of family and friends, but I still feel utterly alone.
Loneliness and being alone isn't the same thing. Of course I am lonely and miss my husband. Being alone after getting used to it has been an uplifting experience. After being totally dependant on my husband for almost 50 years I have learned that there is very little that can't be learned. My husband liked to control everything and I was content to let him. I have learned to do a lot of home repairs myself. Finances scared me and I have become quite good at managing things. I learned to set up on line banking and paying bills wasn't as scary as I thought. I bought my first car myself and had my house done over in my choice of colors. No fear of husband's rages at workman. I can leave dishes in the sink and eat cookies for breakfast. My counter tops are always clean and the toilet seat always down. This isn't the way it was supposed to be-but what it is. I will survive.
Thanks to all of you. You express my thoughts and feelings better than I do. My wife and I married when she was 16 and I was 19. 57 mostly wonderful years and now this. I just got another shock tho. Her GP suggested that I discontinue her cancer treatments. He said, rightly so, that her memory is so bad that she wouldn't know the difference and that she would have a better quality of life. Down deep inside, I think he is right, but, I just wasn't ready to hear that. Oh well, another restless night. Hope all of you have a good (?) day tomorrow. Your Friend
Dean, I'm so sorry! You and your wife are in my thoughts and prayers.
Bluedaze, thank you for sharing.....after losing Diane, when my husband goes, I'll be living alone for the first time too. It will be a big adjustment for me. We were partners and decided together on things. Of course, I've now had two years of taking care of everything including him, and I don't know how well I will cope with being alone. I'll learn.
Dean, sorry to hear about your wife ..The Dr. has a point..my prayers are with you... I think one of the hardest things to cope with, with this disease..it the lonliness, not being able to have a convesation, or talk about the Old times. We have been together for 58 years , all those memories, I have, but he doesn't....doesn't get any sadder....Life goes on...one day at a time.....Rosalie