This has not been a good day for me. Took DH to a lovely mall to buy a couple Christmas gifts. Did a lot of walking and I could see he was getting tired. On the way home I drove through a subdivision where we lived in a beautiful home for 35 yrs. True the house is changed...new owners added on and it looks different. We moved into a condo about 10 yrs. ago but I thought dh would remember the house. No memory. We stopped at a McDonalds on the way home. A regular restaurant is too challenging for him. The whole day felt like a washout for me. I say all the prayers posted. I know things will only get worse and I keep waiting for him to show me signs that the things I do for him are pleasing but I get the feeling most of the time that he just takes me for granted. I have to remember that dh is really nothing more than a child mentally. I hope this is just a glitch I have to overcome. The cards are coming in with all the trips, family gatherings enjoyed by friends and family and that just adds to my misery. Thanks for letting me vent.
Shirley, they know deep down and it means everything to them: I think you'll see that more and more clearly as time goes on. I found the stage you're in to be the toughest one. Don't despair.
Hi shirley, I'll talk to you for a minute. Everything you say rings true to me as well. I don't like resturants, my wife can't decide, so I just pick something easy and we don't talk unless I do and I get tired of talking. I often feel as though I should be more helpful and embelish the event but I'm worn down. Sadly I don't pray so I'm in this alone. I'd like to say, if I may, he doesn't take you for granted. He probably would be just as you wish if he could. I often get so so so frutrated with my sweet BJ then I realize she hasn't a clue and I try to regroup, over and over and over. Your story of driving by your house struck a chord. We had a lovely home and pool and gardens and cars, all the great stuff. It's gone. I moved my wife from Calif. back to the midwest to live in a 600 sq ft. rental. She was from there and I brought her home for the obvious reasons. Our home and nearly everything is a memory. I don't think about it. Your husband is lucky to have you and my wife is dam lucky to have me. It's just the way it is. My wife once taught school; seven year olds. Now she is younger than seven if you know what I mean. She still is very lovely, but so lost. She hears our TV and thinks that people are in our home. Lately, she's seeing things and is sure our tiny house is changing. Isn't is this just unreal? And like you, I hear and see others doing well. My best friend in Calif. at least this year didn't send his brag letter but instead a picture of he and his beautiful family in some great spot they hiked hard to get to. I can't get two steps out the door until my friend is by my side. Wish you a merry private Christmas all to yourself. Glad I could blather.
Oh Shirley I understand completely also-last night my dh and I argured over bathroom issues for several hours and as I finally got him into bed and asleep I just sat down and cried thinking-is this what I have to look forward to for the rest of our lives!!!Of course I know there will come a time when everything will get worse but last night I wondered which one of us would made it through!!
We lived in this house over 40 yrs when I placed DH. One afternoon I took him for a ride & Ice cream, then stopped by the house (I still live here) and took him inside. He did not show the least sign of remembering, I could have taken him into anyone's house. However, when I took him back to the care facility, he knew exactly where he was and was happy enough to go in.
Bak - try not to argue with your husband, It only frustrates both of you, his reality is no longer yours. If he tells you he spent Monday on Mars, just agree, ask him how the weather was up there. It is very hard to change the dynamics of a relationship of many years, but it will be easier for both of you if you try. There's no way you can win an argument with someone who has AD.
At the very least you must understand that it is right to feel these things. Because they are happening and they are powerful and they can break your heart if you're not careful. We're not only entitled to feel these things we must feel some of the truth of them so that we stay at least somewhat balanced.
We're not bad people because we resent that our lives are being taken from us. They are being taken and we should have strong feelings about that - and let them out.
And now with christmas coming it really hits home. You're talking to someone who left his big tree up all year just so I wouldn't have to take it down and put it up again. I'm glad I did. It helps me to understand that I'm allowed to do things that help me.
You want a tiny bit of advice? Make sure you tell everyone who has helped or has listened somewhere or has done anything you think is good that you appreciated it, that it helped or even that you know someone is there in spirit even if they don't have the courage. Give to others and make them feel good. After all you're very good at that - even if we spend the entire experience both denying and fighting that glaring fact.
I've always said I don't need a reference from anyone on this board. I already know their character. I know because I know what it takes to hang on here. If we could just get those who have gone through it to see the light within them. It's always up to us though. To fight our way through it. And to realize speaking in religious terms, that God has found a virtue within us even if we have not. Our spouses if given back their brain would testify loudly that they see it too. Oh well. Upwards through the mud.
I have written this to you Shirley and promptly lost it so this is the reader's digest verison. For me working full time and caring for hubby leaves little time for posting, reading etc. we all know and get that about our lives.......but Shirley your not alone as long as you have yourself. The path we are on demands that our mindset change to survive. Shirley you are a wonderful loving person, embrace every loving memory of that house, your loving husband, your life. But also embrace what a good and special person you are and what makes you so special is that you have loved selflessly because when you care someone with Alzheimer your and Angel on earth. I think we can say we are alone but never be lonely with the gifted person that you are. Life with purpose, Life that gives, that's who we are ......and the cleaners of poop. I say this all the time, exhaustion is my enemy......it makes the burdeon to hard to handle. I have learned to be the juggler of hubby and my life.....and sometimes I drop the balls ......oh well that's ok too. Please dear Shirley remember your the best company any one could ask for especially yourself.
Shirley, you are not alone....it is particularly hard to continue to deal with the exhaustion of caregiving for a demented spouse and deal with all the emotions which typically surface during this time of year. I too feel lonely even though my spouse is still physically living at home. I put up a tree this year because it still makes him happy and me as well. Doesn't look like those of years past and I found out the hard way that we can no longer use our beautiful glass ornaments.
All of your replies have been like a shot in the arm for me. After reading them, my spirit was really buoyed. I even looked at dh with a renewed joy and determination to get through this as best I can. I try to keep in mind that he would do everything possible to take care of me if the roles were reversed. You all have been the greatest Christmas gift I could have hoped for. It is as if you have all been wrapped and put under our tree.
How about if I wrap my DH up and put him under your tree????? He jut tied up the toilet with a whole roll of toilet tissue.!!!Yeah another fun evening at our house,anyone want to join us???
Sorry, bak, we can't join you. We each have our own fun evenings going on. Sure glad we have this place to share all our adventures. Shirley, it really does help to share what we're all dealing with, doesn't it?
No tree for us either this year, I'm just not feeling festive at all. The neighbours have all decorated their homes with lights, Dh likes to look at them like he was a kid again...so that will be fine by me.
Dh , even after living here for 16 years, we built this house, he wants to go home to where we lived over 30 years ago..every night he asks when we're going home, every night he gets some of "his " things together ready to take "home"..asks how much are we paying to stay here, and we better go before we get thrown out...If it wasn't so sad it would be funny. Yesterday he was very down...said he would not be able to look after himself, and begged me to never leave him, so he does know he is not well...but boy ,that sure makes it very hard for me to even think about day care let alone placement.
Bettyhere*...I can't help pressing a point with DH ..from now on if Dh says he spent Monday on Mars, I'll say "that's nice"...love that!
Shirley...that's the beauty of being able to come here and vent...every one is so understanding, your doing an amazing job of looking after your Lo. I hope your having a better day today...it's so hard, one day at a time.
So today my coworker/friend told me that I need to leave my problems at home. That work is work and home is home. She said it is written all over my face when I come to work in the morning. I was shocked since we have been friends/co workers for 10 years. My DH was diagnosed shortly after I started. He will be going for a. 3 day stay next week at an ALF. He is also now ona wait list for this same facility but for the NH. Last night he was up several times and then up at 4 am which means I never got to sleep. Yes I was very tired after seeing 38 patients today. I told her I was sorry I wasn't living up to her expectAtions of how I should be acting or feeling but I am doing the best I can. She told me everyone has stress I need to learn how to deal with it. Do most people feel this way?
Shirley- thanks for starting this thread. I am also so tired of feeling lonely. This year I had to file bankruptcy, and lost our home to foreclosure, deal with unemployment and had to move myself and my two daughters, along with DH. Dealing with all this without a spouse, partner or what ever title you choose to use... almost broke me this year. Rosiek- I try so hard not to bring this topic up at work, I often wonder if most people have that same reaction. It hard when this is our life and there is no one to share it with.
Sherizeee, I am proud of you that you are still standing after this past year! This disease is so isolating, sometimes I think I'm going crazy, yes it's very lonely. I really do appreciate this website!
seems to me these gracious folks dont want their worlds interrupted by the sadness and truths that come with a terminal disease. they are willing to only allow the 'normal' stress and tolerance with regards to someones problems. i find it very insensitive -self centered, and these are same folk that i am willing and able to cut. at best keep a distance if they are coworkers. wouldnt it just be nice that they could give a pat on the back and express some encouragement of a job well done instead of all the patronizing. sherizeee you have indeed had a hard time of it friend. i hope something good happens for you this year.
Tell your co-workers where to to go! whoops I know you can not do that but it must get old being told what to do when they have NO IDEA what you are going through.
A friend of mine who is a caretaker for her sick husband has been told to "get over it." Some people just don't get it, and don't want to get it. It might impinge on their perfect world and we mustn't disturb their lives with our imperfect ones. I don't talk about my life except with the prople who DO get it, and they are few and far between (except, of course, on this website where everyone understands).
Of course, it's difficult for all of us, especially at this time of year, but we must try to make things as much the same as it was as possible, not only for our spouse but for ourselves. Putting up a Christmas Tree is hard for me but it's something I must do for him and for me. Just looking at that tree makes me happy, even if it is smaller than the one we used to have. Even if our lives hadn't turned out this way I would have had to give up that big tree anyway; it was just getting too difficult for me to put up. So, I bake and I do all the usual Christmas duties just as I have in previous years. I find it makes him happy - sometimes he just sits and stares at it and when I ask him what he's doing, he says he's just enjoying looking at the tree.
We must not wallow in our sorrow. I know there are days when we feel we just can't go on this way, and I just give in to it that day, but the next day I know I will feel differently. I know I have become much more patient with him, even with the constant repetition, knowing he just can't help it. Almost six years of this life, some years horrible, some not as bad. There isn't a thing I can do about it but make the best of what I have.
We are on a roller coaster ride for sure. Some days are better than others Some times I feel I can do this, yes for my loved husband, so times I need friends to talk me off the ledge. I pray as I continue to walk this out I will become a better person and be able to help those suffering without judgement, but just encourage them. I am very greatful for this site.
Rosiek--I was told something similar to what you posted by one "friend"-- that I talk too much about my husband's illness. As Divvi said, I cut off the relationship (unfortunate, because her husband is really a nice guy). As time has gone by, I realize that this "friend" has a very tenuous hold on reality herself; she has also alienated other mutual friends. It's a shame that person you described is a coworker, but I agree with putting as much distance between you as you can. Fortunately, I believe that there are far many more supportive people in the world than the insensitive ones--at least, that has been my experience since this journey started.
I was told by a so called best friend that if I don't stop talking about DH ...people will back off...meaning her I think. I think, it'll be me backing off from her. Friends like that I don't need.
YIKES!!!!! I thought I had heard it all, but that was the most inconsiderate, cruelest, clueless, mean spirited thing I have ever heard from a co-worker. Friend? I don't think so. A friend would have said - "You look so tired. You must be under a lot of stress. Is there anything I can do to help?" No sense in wasting precious emotional energy on her. I agree with the distance advice.
Yes, Marilyn, there are a lot of supportive people in this world. After I retired from my job in the school system up North, the husband of our Special Education Director was diagnosed with pancreatic cancer. She still came to work every day, exhausted and stressed. Her co-workers took turns cooking meals for her every night for the few months until her husband died.
I had a friend tell me that everybody has something wrong as they get older. I was so stunned I couldn't speak. This is a woman who has money, goes on wonderful trips, she and her husband are in good health, they have their daughters, grandkids and sons-in-law around all the time. She was equating Alzheimer's with arthritis and cataracts. Dumb.