I know there are some new people out there having some horrendous experiences, but we have not heard much from them other than a few initial posts. Stay in touch if you can, guys...there is a lot of combined wisdom and support here if needed.
I was born irreverent. I was designed to accept nothing as given. That's my job. I've gotten old but when you're truly irreverent, you only play roles that you don't take seriously. Few people understood when I retired at 53. I felt good about what I'd done and it was interesting; but, almost no one answers the question "if you love your job would you do it if they didn't give you money?". I liked what I did. I couldn't see it as something serious in and of itself.
I think my outlook was one of the secrets of the genuineness of my relationship with Dianne. She never became anything and always remained her. She was important. What we were doing wasn't. I tell her she got gypped but the truth is she had her time. She was lucky to have me. I was just as lucky to have her which the pain reminds me is true.
This has been a long, hard road. It brought me to my knees. Being irreverent isn't being strong. The worst thing that Alzheimer's did to me was take away my spirit. And the best thing I've done for myself in life is demand it back.
The smartest person who ever lived is completely unknown. It's not da Vinci or Newton or Einstein. It's mathematically certain that it was some schmuck who nobody taught to write or who didn't live long enough or who was known as very clever in the neolithic village that turned to dust with time. Talents can be inherited but they mostly come random, in every shape and in every size. Time and again it's proven that appearance means nothing as anyone on camera with a perfectly symmetrical face or thigh gap you can fly a plane through or breasts like Mt Rushmore or bad boy looks with a chiseled chin will tell you.
All I have to do is look for five minutes to see that nothing is what it seems. That's a good thing. I should take life more seriously I've been told when I was six and when I was sixty. Not on your life.
The first two layers in a human being's reality is you, and you watching you. The first is you in real space-time. The second is your reactions. One of the things you learn as a performer is to block out your reactions at the time. That applies to parenthood, jobs, roles, and all kinds of things. That's the main thing soldiers get training in - how to shoot someone and suppress reactions. That's how PTSD is born. That's somewhat how other stress disorders are born too.
What things look like may not be what they are. That's the heart of irreverence. Those in charge don't necessarily know. But just as in this short video, that doesn't mean they don't want to know. The appearance of something may be the least important thing about it.
Trenches are tough. Who on earth could believe the amount of work and suffering that goes into caring for someone with dementia. We come out of it battered, torn up and scarred. Unraveled. And alone. Then we gradually heal. (perhaps even with a dog companion) Wolf, really enjoyed the youtube video...
Thanks for asking Elizabeth. I stopped checking in for a bit. Couldn't even think straight. I always said one punch would be grounds for divorce. Even before we got married. Well several punches taught me I am not quite so prepared to defend myself as I thought. I haven't filed for divorce, mostly because the next day, although he didn't remember doing it, for once he didn't call me a liar. I locked up all the regular beer and found several sources for the nonalcoholic stuff. Been giving him one Coors and then all the rest nonalcoholic. A bunch of things are much better without the beer. And no fights for several days. My problem is I still wince when I move. The bruises will take awhile to disappear. I keep trying to smile at him and find things to talk about. Not quite able to do that yet. Have been making more of an effort to keep him entertained in the dreary afternoons.
I had been enjoying the Christmas Lodge quite a bit. Last night it even inspired me to put up the Christmas tree. Last year I made these crocheted spiral icicles. Never did like tinsel. These "icicles" are fascinating. DH didn't seem phased by the decorations, but didn't seem to care about it. Surprising because he was the one who always wanted to put everything up the day after Thanksgiving. This is the first year with no outside lights. Since last year it was a nightmare getting them up and then he wouldn't ever turn them on! My friend is a geriatric nurse. She says I should start looking into placement. But I can't see that working for him. She says he'd have a better quality of life. I can't see it. Maybe I will get some help taking care of the pool and yard so I can try to find some things to do together now that he won't golf any more. Anyway. I am still here.
Take care bhv,you really shouldn't be subjecting your self to violence. You know he isn't the same man that you married? Dementia has taken that man and this one, who would hurt you, should be treated very differently. Please look into some support for your self, you need to be safe. All the very best to you.xxx
I was sitting here listening to Christmas music online. I was in the spirit but I find as the day nears I am not. Tonight I was thinking back how most of my siblings would gather at our mom's when our kids were little. Then as the kids grew because of the behavior of my son their cousins wanted nothing to do with him. They would often remind him he was not really a Box because he was adopted. Mom didn't help because she would visit her other grandkids (some close, sometimes she travels to Hawaii or even Germany (my sister paid her way) but never come visit us. I tried hard to make the kids understand it was not them but me because I would not let her smoke in our house. Didn't help probably cause their cousins never let them forget they were not really of our family. Kids can be cruel. The others get together but I am not really welcome. I am the odd man out - always have been. I have one sister whose kids are so disrespectful IMO but in their family they are use to talking to each other in mean spirited ways, not to mention the profanity they use. I so miss when we were a family.
Other than that I am holding in there. Next month should be better with the holidays over. I have to fight not to cry on a whim. Funny thing is when I am alone I can't.
I've been thinking about your post for a while, Charlotte. I think we can only enjoy the holidays as best as we can, and maybe hoist our cup of tea in a toast to the ones who have gone before us. I enjoy the music, the cookies and good things to eat, the Christmas lights and decorations, and mostly, just the looking forward to having more time to myself in the New Year to do the things I want to do. Not so much cooking and babysitting...in fact...probably none. I don't fit well in the family that is left to me--the ones who I was friends with whether related to or not have pretty much died off. I would just be good to yourself and make it as pleasant as you can for yourself. Even small, insignificant pleasures can be uplifting. You have a lot of pressure on you right now, between Art and the shoulder, so I would just take it as easy as you can, and one day at a time, and treat yourself like an honored acquaintance or your own best friend.
If you are a believing Christian, then the holiday has authentic meaning for you but if you are not, it's an empty promise. In fact, that is the problem with Christmas - expectations. Sometimes these expectations are based on our own experience (memories of past family Christmases) and sometimes they are based on ideas of Christmas that were planted in our brains by popular culture (books, movies, TV, and the retail industry). It would be a rare event for anyone who qualifies for membership in this website to experience a Christmas that lives up to the expectations that surround us. So when we are not facing a happy Christmas, we not only feel sad, we also feel cheated and resentful.
My own childhood Christmases were happy, as were most of those I spent with my husband, but for obvious reasons, that is not the case now. I have also seen enough of life to know that many people do not have happy Christmases and that what is peddled by popular culture is largely false and intended to lull us into spending money. (I am not immune - I actually bought a 32" battery-lit fake wreath which was totally inappropriate for the front door of my modest house!) My circumstances right now offer little prospect for happiness, but I know for sure that if I have any chance of happiness in the future, it will not have anything at all to do with Christmas or any other hyped-up holiday.
Myrtle, I agree. But Christmas is really just a Christian version of the old pagan holidays that celebrated the winter solstice. I don't think you necessarily need to be Christian to celebrate the lights against the darkness that this holiday is really about. I personally couldn't find much happiness in December 2014 or even 2015--although 2015 was better--but I like the idea of lighting candles (preferably flameless), having strings of holiday lights outside my front door and across my headboard, and having the Christmas tree lit up. I've often thought that the old pagan festivals hold a lot of meaning, having to do with nature and the turning of the seasons. If we aren't Christian, and if we hate the commercial holiday hype, I think we can still enjoy our own style of the holiday--trying to get away from so much darkness and getting into the light. (I actually am Christian, but I'm just trying to explain that you can celebrate the season whether you are or not. Hope I'm making sense. And I hate the commercialism. Just hate it--avoid as much of it as I can.)
For those having a rough holiday season, I would say don't have unrealistic expectations, but make it as pleasant for yourselves as you can. Do little things that are nice for yourselves. There were plenty of days when I was caregiving that my first, good cup of morning coffee was the high point of the day, and as good as it got. Hey, I was so desperate and miserable that I would take anything. So during the holidays I'd have a Christmas cookie very first thing with my coffee. Well, wahoo.
Hi elizabeth, Yes, I know all about the pagan observance of the solstice and I'm not arguing that non-Christians should not celebrate Christmas. I'm just saying that when you take away the religious aspect, most of it is hype. (Actually, Easter is a more important holiday in the Christian liturgy but you don't see people getting all teary-eyed about that, do you? Maybe because we don't have the same high expectations about Easter.) When I see people with so much sorrow and resentment because Christmas is not like Christmases past (or like Christmases that they never experienced in the first place), I think we would be better off if the whole thing were put into a more realistic perspective.
I agree that it's nice to treat ourselves and others and to surround ourselves with light at this horribly dark (in the Northern hemisphere) time of the year. I do that, too. I have a tree in the family room, a stocking for Lucy hanging from the mantel, and electric candles in all my front windows (although I'm on my way to Costco to return the giant wreath). Happy Holidays and Merry Christmas to all.
Here it is the night before the night before Christmas. For me this year is a whole lot better than last. Again this year I have not laid a lot of expectations on myself and even though my mother is in hospice I seem to have a much more realistic notion of how I can proceed with her care. My siblings have stepped up mostly because I have stepped bsck and I see them assuming more of the burden. By me stepping back they are learning what it is to care for an ill person although my mother does not have dementia so it is different. I did manage to get more decorations out this year than last and Am playing more music on I Heart radio. I have a friend visiting and going to midnight Mass tomorrow night and visiting my mother on Christmas Day. We are having our family gathering tomorrow afternoon so the little ones will not be up so late and that seems to agree with the adults as well. We r having it catered which relieves the burden of cooking. I am not a winter girl and it is comforting to know that the days are getting longer now. I took a couple small gifts to my elderly neighbors and I think it helped me more than them. They were so appreciative. It does help to do small kindnesses for others and as others have stated so well, to get rid of expectations and treat yourself well with kindness and gentleness. Alz caregiving does indeed beat you up. It is like surviving a war--physical, mental, emotional, financial. It takes time but the healing does come. At times I still can hardly believe I survived it and have landed on the other side. To all the other people grieving a loss right now know that we care and just keep on keeping on and it will get better with time. You can never replace your loss but the pain of the loss becomes less and very slowly you will feel your heart become whole again. Merry Christmas to all and to all a good night.
Thanks for asking about me...I'm still around. I just have not been in a communicative mood for several weeks. I've just a few minutes ago started a new thread (?) about my concerns, but for the most part I've just spent time trying to find things to take my mind away from the present circumstances. My youngest son was home from Japan for Thanksgiving...that was wonderful but hit me hard when he went back. There's just me & my oldest son for Christmas Eve (going out to eat, then come back here to watch some "traditional" Christmas DVD's.) The whole season has just been sad for me, even though I've done a little decorating it's been with a heavy heart. Even church "hurts".
As for my own health issues, I've been doing well. My next CT scan is Jan. 3 - woohoo, Happy New Year Mim! Also at this time, I become 75 years old....three quarters of a century! Oh my. I think everything combined, this year has not been good & my memories cause me to miss the old times more & more. It has really hit me that nothing will ever be the same again. I usually feel much more positive than I'm feeling right now....aren't you all happy that I posted this uplifting comment!!! :) :)
Well this morning I delivered Christmas hampers for our local food bank it certainly made me realize how fortunate I am. A very rewarding experience.
My Christmas, I will visit here to say hello and wish everyone a merry Christmas, then the lady who gave me my respite time prior to Lisa going into care, who has become a friend by the way, has invited us to join her family for dinner, I am going to try it. Don't know how it will go but they All are aware and understanding, we have been to their family functions before. I feel this is the last time we will be able to do anything like this. Boxing Day, Canadian term for day after christmAs, picking up my son who flew in from NY and the two boys and I will be joining friends at their cabin for a couple of days of skiing. They will have a full house I think I am couch surfing, another turkey and hopefully lots of fun. So it will be a good Christmas. It is what we make it. See you on Christmas Day!
Thank you Mim for checking in. An your comment is uplifting because you are taking it one day at a time. 75 - doesn't sound that old bu 3/4 of century does.
Things have been so much better since I took away the beer. DH is quite happy with the non alcoholic stuff this time. A month ago he wouldnt try it, but now since he can't find the Coors, it is fine. He has been so relaxed and happy. The last few days I have been able to convince myself that this is my job and I am not yet ready to quit. Have had some luck with telling myself to just quit complaining about things I can't or won't change. Sometimes that works. Need more practice. The house is dirtier than it has ever been, but I am not worrying about it just now. It is Christmas Eve. I have been spending more time trying to keep him more entertained and engaged in the afternoons. Made cookies and had several Christmas shows recorded. Looking forward to a peaceful evening. But at 6pm he decided it was bedtime again. So am sitting here alone, looking at the Christmas tree. Relaxing after the sleigh ride at the Christmas Lodge. It is so nice there. Sometimes it is difficult to go home. Some of you will be jealous because, instead of wandering at Sundown, he seems to go to bed. Sleeps from around sundown to shortly after sunrise. Regardless of the season. Not sure how long this will last, but it allows me to get some quiet stuff done at night.
Yes, I'm jealous. What is the secret? Larry started getting agitated around 5pm: "I want to go home. etc. etc." I was sleep -deprived for months, because he would be put to bed all comfortable and snug as a bug in a rug--and it lasted for about ten minutes before he started with the agitation off and on all night. Aaaugh. If's there's anything good about being alone these days, it's that I can finally sleep all night in a deep, unbroken sleep, snuggled under the kind of soft flannel blankets and the down comforter that I love (and he didn't.)
Wish I knew the secret. He seems to get up every few minutes to look out the windows and is agitated that it is dark. He closes curtains and locks doors. And checks and rechecks. But then he decides Xena might want to go to bed and takes her upstairs. It has taken her awhile to get used to doing that so early. He gets very upset if she comes back downstairs with me. Poor Xena is so confused.
Tonight is far from peaceful. He basically ruined Christmas eve and Christmas day. I have just been waiting since about 8 am for him to go to bed. But that was an ordeal because I wasn't NICE enough. So I put all the Christmas stuff away. Lost the spirit for that. Hyperventilating and just short of panic attacks all day. Trying my hardest to be NICE. Not good enough though.
Well now Xena is crying to go outside. Good night all.
bhv, the answer is going to be medication to control the behaviors. If he is already on something, it isn't working, and needs to either have the dosages changed or he needs to be put on something else entirely. You can't go on like this--you will collapse. (And it isn't fair for Xena, either...is she a cat?) Also, as cassie mentioned upthread, it sounds like an unsafe situation for you, and perhaps the pet, if he gets violent. That needs to be addressed, either by medication management, or, as your nurse friend suggested, maybe it is getting to be time for placement. Others may have suggestions about that, too. But at this point in time, it sounds like just getting him interested in the pool and the yard is not going to work...sounds like he is getting way past that. And frankly, your safety must come first. Of course you want a good quality of life for him (not that Al Z. Heimer leaves much quality of life anyway), but not at the expense of your own and your pet's safety.
bhv. It sounds like placement maybe in the very near future. Be very careful for your safety.
I had a very sad Christmas again this year. I had lunch with Kevan both Christmas Eve Day and Christmas Day. Spent only 2 hours each time with him. He became very tired and very quiet. He now tells me that being on FaceTime or together is better then on the phone as he can just sit and not talk to me if he wants and he does. He often has nothing to say to me. I now find that we have nothing in common anymore. His life is there and I am not part of it. True for my life as well. As I said in another thread. I just seem to be here to run when he needs me. His youngest son is a real problem and has always treated me like crap. He doesn't call or visit more then once or twice a year but called His Father Christmas Day but not me this hurts and upsets his dad. I used to lie to him and says he did but then I got caught in that fiblet when the son told him he had been busy and forgot. So now I tell the truth but it really sets Kevan back. Kevan can't go out to big fancy restaurants anymore so this son doesn't want to eat at the residence so no more visits. What a pain in the a**. I'm really happy Christmas is over. Like bhv my decorations will be down soon. Had a great time at the lodge. Snow angels were nice.
I had a very nice Christmas. I had planned to join my sisters, brother-in-law and nieces for Christmas Eve dinner but decided at the last minute that the excursion, which required a 180-mile round-trip drive, would be too tiring, and I wanted to save my energy for my husband, since it will probably be our last Christmas together. The next day, I joined him and his comrades for Christmas dinner at noon. The staff in the dementia unit did a wonderful job of fixing the place up. I was so touched by the effort they put into the event. There were festive tablecloths, poinsettias on the tables, and silverware holders in the form of small Christmas stockings. Best of all, every staff member and resident was wearing a red Santa hat! My husband, whose food is now pureed, ate a little of his mashed potatoes and almost half of the cheesecake. He seemed to be in a pretty good mood, and I stayed with him for several hours as he drifted in and out of sleep.
We shared our table with a man who has just been admitted to the dementia unit. I had met him years ago in the canteen - he had previously been in another unit - and he had told me many times about his orange cat, who was living with his family. His daughter, who now has the cat, joined him for Christmas dinner and said that she brings the cat to visit him in a "cat stroller," and showed me a picture of the cat in it. She said the cat resists getting in a carrier but loves being in the stroller. I have never seen such a thing.
I'm going to leave my decorations up for a few weeks. The window candles look so nice from outside and they brighten up the inside of the house, too. I retuned the giant battery-lit wreath to Costco and bought a small fresh wreath, so the front door is dark, but maybe I'll tackle that issue next year.
Thanks Elizabeth and Jazzy. I am going to see how things go with no beer. His doctor suggested a low dose haldol, but I'd like to avoid that if I can find another solution. Things are calmer without the beer. Over Christmas I had really low expectations, but I got annoyed when he started cursing at me every time I tried to find out what he needed. I made the mistake of letting too much annoyance get in my voice. I think just cause I was missing my family and like Jazzy says, we have nothing to talk about here any more. When I left the room this weekend because I was too agitated he kept following me trying to help or just staring at me. So I got rid of the Christmas stuff and feel more normal today. He went to bed early again. Perhaps I can be nice enough tomorrow.
Oh yeah, Xena, warrior princess, is a doberman. She is 12 - old for a dobie. I didn't bring her to the Christmas Lodge because DH would have gotten exhausted searching for her. Plus, dobermans don't like water. One of my dobermans would always walk with us even in the rain. However she would walk around the neighbor's sprinklers. Always cracked me up, walking around the sprinklers in the rain. She's lived all her life in Southern California. Wonder what she would make of snow? She needs her blanket even at ony 60 degrees -- above zero mind you. Odd tonight. DH had put the blanket on her and she was snoring. DH got up and searched the house for something. Just before I left the lodge to see what he might be looking for, Xena lifted her head from under the blanket. He was soooo happy. "There you are Xena!"
Oh yeah, one more story. A few weeks ago Xena was asleep under her blanket. DH kept staring at something and getting more and more agitated. Finally he blurted out, "What can we do about that?" Pointing at the blanket. I didn't know yet what was the matter. Xena raised her head and he says, "Oh it's Xena. I am so tired of this guy." I think he meant this guy who can't remember/undstand things any more. Reminded me a little of Jazzy's Kevan, but Kevan is much more aware of everything than my DH is.
Glad that things are peaceful at the moment ,bhv but do look into your options to keep you and Xena safe. (My husband was quite contented with "pretend beer" too, their poor brains probably don't need the alcohol.) All the best.