This disease is so confusing. One minute DH tells me how terrible the LTC is to live in and the next he tells me what a great place it is. How they take such good care of him and others. " you should move here". I asked him why he wants to come home if the place is so good and he said it is because he wants me there with him. He wants us to live together again. Then the next thing he says is" you know, we could never live together again as we fight to much". I would really like to know who this person is that he fights with because it is not me. I just let him rant as I am getting up to leave or to take him back to the LTC. I'm so tired and I am again starting to cry quite a lot. I think about how it used to be and I cry. I would give anything to have someone to just hold me for a bit while I cry. My good friends are all hundreds of miles away and I don't know anyone here as I haven't been here very long. Most people have lived here forever and have long time friends and are not inviting new ones into their circle. I don't know why I have a phone as not one calls and the only emails I get are from kindle once a day. There is an ad on tv here and it shows a hand behind a sheer curtain. She talks about how people are treating her and how they either don't see her or avoid her. Then she pushs the curtain aside and says she has AD but "I am still here". You know, she is treated this way but so are we. No one sees the caregiver. I quite often wonder why staff tell us to let them know of any changes we see in our partner, but I sometimes feel they don't really believe me or care as they never seem to see it. Over protective? Who me? You bet!!
Hang in there jazzy I know that place and it is not nice. I too have many good friends but none close, we too moved about 7 years ago, Lisa well under way so hard to establish new relationships feels lonely. In fact I have never felt more lonely than in the last few weeks. We are now in our 12th week of placement and I never realized how difficult this time would be. She is adjusting but every visit is hard I want to come home, why don't we go on a holiday, you have the dog it is my dog he should be here, the people here scare me I need to get out of here, you know there are some nice people here, you never come to see me, your just going to leave again Aren't you, why don't you stay with me, if you are just going to leave don't come back, you don't want me anymore, sometimes I feel visiting just makes her keep reliving what she has lost and for me many times I am just in tears and drained by the time I leave. I thought it would be better by now. It is getting better but it is such a long torturous process. I am writing this while thinking should I go in today I have been the last two days or should I force myself to stay away?
Do I keep visiting for Lisa or for me? I have cut down on the visits but have not missed more than 2 days in a row. I need to change that. I too jazzy would love someone at my side it feels so lonely having to deal with this, we use to have a partner to lean on when things got tough but now it is just us.
I realized that I need to change things in my life and the only one to do that is me. So I am trying, I have been working on getting myself in better shape, doing some hiking, getting on the tread mill, bought an e- bike and really enjoying getting out for a ride, it is good but I have to force myself. I have lost 15 lbs, the flu helped. I have also learned some things about myself, I am ok on my own but I find I am not just going out many times would rather just stay home with me. Have been invited to a few things but just doesn't feel right going on my own, doesn't feel right being with other couples. I have met a nice woman and we have spent a little time together but again she does it live close. I hope that will continue to see each other but who knows. it gives me something to look forward to and if I am in a better space I can be better for Lisa.
Jazzy this is a process not an event, we will get there it will get better, we either give in or keep fighting and moving forward, for me I am going to keep fighting I know that is what Lisa would want. I know there is a bright future out there but it is up to me to make it happen. Good luck.
Jazzy - so sorry this process keeps happening. One man is thinking emotionally when he pleads to come home or wants to live together again, the other is the moment of the rational thinking knowing it is not the best, that he is where it is best for him and you. So horrible to keep being torn between the two. You have learned from past experience when he complains how horrible they treat him to take it with a grain of salt.
We use to talk here about building our own village where we have each other for support and company. You are an example of why that would be great.
So sorry, lindylou. I guess that's all we can do - hang on. What else is there? We have no other choice.
The way I survive is to compartmentalize. But when there's a chink in the armor, the full sadness and horror can sneak into my consciousness. The other night, visiting my husband, somehow I let my guard down and thought, "Look at what has become of us," and tears rushed to my eyes. But I quickly snapped back into form. I'm wondering how much damage is done to our souls/psyches/spirits by the constant activation of psychological defense mechanisms. So sadness may be a good thing in a way.
Charlotte That would be great. A place where we would be understood and hugged.
Rona, Lindylou and myrtle. I think that tears and sadness are a big part of the lives of dementia caregivers. Lonesomeness comes next with frustration right behind. The one thing missing is hope.
The thing that did give me hope in the darkest of days was that I knew it would be over one day--was not sure when. But someone on this website and I think it was Elizabeth who said something that resonated with me and it did give me hope. Now I do not remember what it was but I recall it was as if a ray of light came into my heart and it was hope. This journey will be over for all of you too. You will survive as did all,of us who are now widows. You will not be the same person after surviving it but you will be more aware, stronger, and I believe have a deeper knowledge of who you are. You will have survived because of the courage that you are exhibiting right now as you put one foot in front of the other. Try not to wallow in the past, what you have lost, or in the future because we do not know the future and oftentimes think the worst. But take today and know that you can survive today and that tomorrow will be better. God bless all of you who are going through this. We do understand so well what you are experiencing and support and affirm you.
Co2 Thank you. I had stopped taking each as it came and am kept trying to keep my memories of that person in my heart but it is impossible right now with all his ups and downs. Your so right think about each day as it comes.
I often think that it may be better for me when that day comes when I walk into his LTC and he doesn't have any idea who I am. Only then will I be free of his control. It will be a sad day but maybe a freeing one for me.
One day at a time! How many remember and loved Cristy Lane singing One Day At A Time?
There is this lady here for the summer who was absolutely miserable. In fact, summer before last she was so negative I avoided her. This summer for some reason we have become friends. She is 73 and her life is not what she wanted or planned. A lot has to do with her husband and how things negatively changed after he retired 15 years ago, promises he made, etc. I have helped her take her life back some. I have been working on getting her to change her speaking - hate it when someone runs their spouse into the ground like she does. She is starting to laugh (not easy to get her to do) and changing her attitude, letting the past be, accept what she can't change, etc. Jas will sit at their door and bark, when she goes in goes directly to the cabinet with the treats. Her dogs (goldendoodle and shih tzu) will sit and stare at her for a treat when our dog shows up. We all crack up except her. She gets mad at them for staring until she gives in. I know she wants to be we all know when you are miserable laughter feels like a traitor.
You can't change the past, dwelling on what he has or hasn't done will not help. She can only change today - one day at a time.
Laugh - I think all of feel a betrayal (easiest word I can think of) if we laugh and/or enjoy life, betrayal because we have what our spouse doesn't - a future.
She says she doesn't know how I do it. I tell her 'one day at a time'. If I think of the past or dwell on what never will be is when depression hits the worst. I can only keep in the day to survive. We all know that here and are great reminding each other.
My wonderful friends. I really couldn’t survive without you. Myrtle says compartmentalize. (I looked up that word, as I did jibber jabber recently, wondering about its source. Found the meaning, though not the origin.) Charlotte says, don’t remember the past, or even think about the future might have beens, that now for sure will be never will have beens. Reside in the now.
The overwhelming sorrow I experienced this weekend has to do with an upcoming trip I am taking to an event that both my partner and I have enjoyed together in the past. My partner is going into a nursing home for one week. I will be driving to Tennessee to a little Appalachian town called Jonesborough that will have five or six huge circus tents and thousand of people coming to hear stories from all over the world.
So, Lindylou, compartmentalize. Pack the memories away in the back shelf closet in your mind, and go and have good time. And while you are at it, the future shared dreams you and partner anticipated need to be packed away as well. Then get in the car and drive away. Leave it all behind. Enjoy yourself. Everything will be waiting for you when you return back home.
I am sending virtual hugs to you Jazzy. Been meaning to write since you started this. Computer troubles. I'm on that roller coaster right now too. My Nurse friend says it normally takes 2-4 years to lose the amount of ground DH has lost in the last 6 months. She says I keep getting to the end of my rope because things are changing so fast I don't get a chance to adapt. Boy did that resonate! Difficult to get over the anger. Difficult to accept being cursed at so much. Difficult to be soooo alone. Some people talk about hope. I hope I can survive for the next hour or two. CO2 says it will get better. Well, no, it will get worse. I get mad sometimes because I don't feel allowed to complain about the current situation because it will be much worse next year. Well now it will be much worse probably tomorrow or maybe next week. Saturday two girlfriends and I got together for lunch at one gal's house for potluck lunch. It was soooo peaceful, calming and relaxing. That feeling lasted all the way to this afternoon (Tues). I wish I could stop by for tea and hugs but I am on the other side of the country. I hope you can find a couple of girlfriends soon. That helps.
Hey Charlotte, I remember how you were avoiding that lady last year. Wow, you got her to laugh! That's so cool. Made me laugh picturing those dogs staring at her. Hope things go well for you. "One Day at a Time".
bhv - Complain all you want about the right now. As Charlotte just said the right now is all we've got. It does help to get the virtual hugs of those who understand. And if we end up still complaining next year about things even worse, then so be it.
I understand your feeling of always being off balance or being at the end of your rope. I just find a routine, a way of handling things, and it works. Then all of a sudden everything is very different. The old adaptations that were sufficient last week don't cut it anymore. What do I do now?
I'm leaving on my trip tomorrow. Hope I don't bump into a hurricane. Hope all members on the east coast stay safe.
Please do bring back some stories for us. I really miss Elizabeth. Her stories of her different places she lived were enjoyable. I must tell you about my little Yorkie and the squirrels. I have living room windows that look out onto some trees and a school yard. I have a deck and my bird feeder are there so I can enjoy them this winter. I also have gray and black squirrels that enjoy the feeders contents. Willy, my Yorkie hates the squirrels and spends much of his day running from the chair that is in front of the windows to the patio doors, which I must keep open so he can chase the squirrels off the deck and away from the feeders. Mind you the Jays, grackles and chipmunk are allowed to stuff themselves and he just sits and watches. He seems to enjoy all the little birds that come to the feeders and gets very annoyed when the squirrels chase them away. Willy does not have an ounce of fat on him. He is solid muscle. Most days I close the blinds so he will have a sleep or he doesn't rest. My son came to visit on Monday and Willy would run to him and they would run out and chase the squirrels. It was so cute to see this little dog, 12 lbs, and my 200 lb man standing with dog paws on the spindles and my son with a broom hitting at the branches to chase away the squirrels. I wasn't able to get a photo as it all happened to fast, but it will be in my heart. I enjoyed Elizabeth's stories of her and Bandit and their walked. Enjoy
bhv, you wrote, "it will be much worse next year. Well now it will be much worse probably tomorrow or maybe next week." I remember the earlier times as being the worst. It can plateau out and his anger disappear. There can even come a time of serenity.
Jazzy - your Yorkie sounds very entertaining. Gives you simple reasons to laugh and enjoy life in the midst of all the chaos. We have had times with no pets and having a pet definitely gives us reasons to laugh and enjoy moments. And their love is unconditional.
Thanks mary75. He is somewhat mellower now and sometimes will comply with my requests. (It is still difficult to beg for filthy underwear with a perky voice.)
Jazzy, it is interesting that Will only chases the squirrels Because they chase his little bird friends away. Fun story.
The one thing I never lost was hope. Once that is lost...what is left? Nothingness... The last and only hope I had was in the after. I realize everyone has very different beliefs. For me, I clung onto the hope that, yes the disease would take him from me and this life. But he would be completely restored and healed once he was in the presence of our Lord. If you are a believer, don't ever lose that!!! I am NOT preaching here...just passing on what I held onto. It is what worked for me in the most desperate and dark moments.
Well said, Aunt Bea and thanks for saying it. It worked, and continues, to work for me. Even if you lose that belief or have never had it, to act as if you do allows one to live more courageously and productively.
Talk about confused on this roller coaster. All week he has been more confused each day, but threatening to beat the *** out of me and the guy who seems to come in the house and spread poop all over the bathroom. His doctor had talked me into trying Namenda again. I looked over my notes and searched these message boards and I am going to stop Namenda again. Confusion is a side effect of Namenda. Not all that common, but those husbands who had it on these boards seem to have followed a similar path as my DH. Meanwhile.... Fri was our 34th anniversary. I was so depressed I couldnt bring myself to arrange some sort of outing. Then one of his friends called and talked him into going to his 55th HS reunion picnic next week. Oh joy.
But then as we are out on the patio I sarcastically said Happy Anniversary. 34 years. He turned to me with this huge smile and taps my arm and says I love you!
Last night he kept asking what are we doing tomorrow. I kept saying Nothing. Finally I said "Nothing. For the rest of our lives, Nothing." He was apparently deep in thought for quite some time and then started talking. I mean, it was really something. Lately he talks a lot and tells stories, but there are no nouns in the sentences. Well last night there were nouns. He says he is happy here with me and Xena (doberman). But he is concerned that I am not happy here any more. I told him some about how lonely it is because he is not aware of the disease and I am trying desperately to keep up with everything that he used to know how to do. He didn't call me a liar! He says he will come with me if I want to do something. So I think I will start trying to plan some things we can do together. Starting with the reunion picnic next Sunday. I am hoping his sister will come to help recognize people. And his friend Darrel will help too.