All of a sudden our forum seems to be taking a downward turn again. Not only have we had a lot of spousal deaths, it seems we are running across members who are dealing with the effects of multiple Alzheimers cases in the family, or of other serious family illnesses or deaths on top of the Alzheimer Spouse issues that we mainly focus on. Maybe we can dig down deeper as a group and try and think of how to help...when an Alzheimer Spouse is being bombarded with even more misery, pain, and horror to deal with.
I realize that this may be the time to turn to the professionals--the crisis counselors, the physician for anti-anxiety meds, (as Larry did, btw, when his son and his best friend--his brother--both died unexpectedly in the same year.)
But maybe we as a group can offer our suggestions, too. When it's even worse than the "normal" hell of Alzheimers Spouse life...what do you do?
Well, I'll start. One thing I think we absolutely have to do is decide what we can and cannot do, and then set good boundaries. My mother was deteriorating pretty rapidly the year before she died--as was Larry. You all knew about Larry, but I don't think I discussed the situation regarding my mother. She was an hour and a half away from me, and for the most part was taken care of by my gallant, tough-as-nails, 88-year-old (now 90) stepdad. I had to just say to him and to the relatives that I simply was too swamped with the care of Larry to go up and help my step-dad take care of my mother. It was just a "no." As my mother (two years younger than Larry) had always told me over the years that I must take care of him, I think she understood, and I think the rest of the family did, too. Others stepped in, although most of her heavy care fell on my step-dad. I just couldn't possibly get involved with her, because Larry was extremely heavy care by that time, too.
Another family story: In 1933, one of my uncles, only eight-years-old at the time, was kidnapped and murdered...his body was not found for months. During this time of family agony, my grandmother, an avid quilter, told me that she stayed sane by putting a new quilt up on the frames and quilting for the whole time he was lost. She said she never wanted to see that quilt again, and she donated it to charity. (If anything at all good came out of that nightmare, she told me that she and my Grandad became closer afterwards...fortunately it brought them closer together...didn't split them up, as so often happens after the loss of a child.) Anyway, a soothing craft activity helped get her through an unbearable horror.
I didn't want to do needlework, but for me, reading mindless paperbacks and binge-watching old TV series on DVD and Netflix gave me a place to "escape" without actually going anywhere. And I found a support team here on this website. So I guess my suggestions include setting boundaries (with multiple tragedies, you really can't do it all--it's hard enough with just the Alzheimers), finding something soothing and relatively mindless to do to stay calm, and trying to find some supportive people who "get it". If people in the real world are edging away, or if local help groups are not helpful (yeah, how often have we seen that?), I would spend time online looking for organizations that might help...like this one.
This is a wonderful thread to start. My multiple tragedies pale in comparison to some, so I won't elaborate.
I am still finding my way in the reinvention category. Reading is my diversion of choice; some days I devour a wonderful book and other days I can't keep my mind focused on even one page.
Perhaps the most important thing that I am doing is stepping back from the drama and emotional involvement that families bring to the table. I was worrying about how everyone else was doing and getting along but, frankly, no one was worrying about me. It was terribly hurtful to be "shunned" (is that the correct word) by friends and acquaintances who are "too uncomfortable" with the disease. It took me a long time to stop trying to figure that out and even stop thinking about it and consciously dismiss these people. My husband never turned his back on anyone and to have this happen seemed unreal. But it did. One can't maintain anger for a long period of time, I think, because it requires too much stoking of the fires. I learned to best let the fires burn out and sweep up the ashes.
I am a visual person so I marvel every day when I open my eyes and behold color, shape and form. Right now I am looking out the window at frozen green grass and a hundred shades of brown in the woods and wondering exactly what colors are there and how it would be painted. I recently went to the Rodin Museum in Philadelphia and was mesmerized by the raw emotion that Rodin was able to impart into his inert sculptures. The Gates of Hell were incredible perhaps because I seem to be standing at the foot of them. The Three Shades (or ghosts) of death, sleep, and loss of consciousness created to counter Adam and the awakening to life, made me weep. These days my husband seems to walk with The Three Shades. Nevertheless, seeing Rodin reminded me that the world is full of wonderful and interesting things and I MUST balance my life as a caregiver with becoming a lifegetter.
This is a very good thread. I will be flying back home tomorrow, and once I get resettled, I would like to give this a lot of thought, and hopefully contribute some good suggestions.
Lovely marche! I am just learning to let go of family and friends who are shunning me now and I find I am able to think better and am begging to do for me.
"Lifegetter" is too perky. Sorry about that. It doesn't impart the incredibly hard work it takes to come back. One of the lessons of the ages is that we appreciate most those things that required the most work from us.
No, "lifegetter" is not too perky. It got me totally thinking. I'm yet another person who has to set some limits to being a caregiver...who is a little lost, because caregiving was such a big part of my life, personally and professionally. So OK, if I'm trying to soft pedal the caregiving now, and move forward into something else for the next 20 years or so, what will it be? "Lifegetter" is good. I need to get a life. But how about this...because it's what I'm trying to do: Lifegrabber!
Ah! A discussion about vocabulary . . . "The problem with "lifegetter" is not perkiness; it is that the verb on which it is based - "get" - is a weak one and casts the subject in a passive role. Elizabeth's suggestion of "grab" is stronger but because it is at the other end of the spectrum it may describe a more energetic role (similar to "grabbing the gusto") than many who have been pounded down by disasters are able to assume. I'm not sure what a better word would be, though: "catcher," "seeker," "finder"?
"Get a life!" Well, in that context, it's certainly not passive! The only problem is that you might meet with resistance from some people on the "Widows and Widowers" or "Spouse in Residence" threads, who have often objected to people who urge them to "Get a life" or "Get on with it."
I like "life seeker." It makes me think of the Lord of the Rings trilogy, with Gandalf and the others...Frodo, Sam, Legolas...on their quest to destroy the evil of the Ring. Too bad we can't throw Alzheimers into the volcano at Mordor.
I've been researching multiple bereavements, grief overload, cumulative grief, etc....trying to find some helpful insights for this thread. Stay tuned for more. But one thing to think about is that almost every resource says multiple losses are common, and that the grieving process is going to be longer. And also that the loss doesn't necessarily have to be from death. (Look at what I did: Left my job three years earlier than I would have. Left all my friends and work companions. Sold a house I loved and left a place I loved. Then lost Larry and my mother. Then lost the network of family that I expected to have around me to support me emotionally after the deaths...and had to fight off being turned into the family servant. Sheesh...no wonder I slouch around in grubs and stare sullenly at the Internet for hours. I am toast.)
You are not toast. You may not have fully decided which you really want yet. You may be going through something where the family anchors versus the plunging in are weighed. You may be fully decided and chaffing at the baby sitting committments you made to yourself. Or you may be doing what I think which is steadily moving towards the conflict point. (Unless the reader is not allowed a viewpoint in which case I apologize that I mispoke myself just now).
In no particular order, these are the suggestions I've found online about dealing with grief overload:
Don't attempt to "deal with it." Just endure it...one day at a time.
Accept that the grieving process will last longer than with just one loss. Be patient. Use trial and error to find what helps.
Find trusted grief companions. Try to find ongoing grief support. Talk to others about what you're feeling. Look for role models.
Practice self-care. Rest. Walk. Connect with nature. Meditate.
Listen to your own inner wisdom. Keep telling yourself that you Will get through this.
Try to spend time with someone who makes you feel happier. Watch a funny movie or something else that will make you laugh. Focus on helping others.
Realize that the elderly may experience multiple bereavements simply due to the passage of time...as they get older, so do their friends and families...and there are a lot of losses. This is often seen by others as "normal" and the elderly do not get much concern from others about their grief. This is called "disenfranchised grief."
I'm not sure how helpful any of this is--I did not find any sites that I thought were worthwhile enough to post the links. For me, the most help has probably been the walking outside in nature, getting enough sleep, and watching or reading light entertainment. Also doing my calisthenics for strength, doing some travel, and also just the passage of time. It sounds mean, I know, but focusing on helping others is not the way I need to go right now. I've been helping others my whole life...now I'm the one who could use some help.
Thanks so much Elizabeth for starting this and adding the great suggestions.
Thanks too for others who have responded. I made notes. Marche, as soon as you posted, "...the world is full of wonderful and interesting things and I MUST balance my life as a caregiver with becoming a lifegetter" I wrote that in my journal. I loved the wording and am using it for me.
For me, some coping strategies are things where I can loose myself, as others have mentioned. I recently completed an online water color painting course. I have always wanted to paint and am terrible at drawing. The instructor had us drawing and painting often with our eyes closed. Then I opened my eyes and colored in. My drawings/paintings are like a child's and who cares. I loose myself "in the zone" of creativity for a bit. A welcome break.
I need to laugh more and am going to try and watch a funny movie a week. I started taping re-runs of the Carol Burnett show too. That group can crack me up.
Katherine, I like your idea of watching a funny movie a week. I liked "The Waking of Ned Devine", "Grumpy Old Men" and Jack Nicholson's. "As Good As it Gets". I can order them from the Vancouver Public Library system. I'll try for Carol Burnett's , too. Anyone else have other funny movies or series they can recommend ?
Don't learn to draw. Learn to lose yourself in creation of expression. Forget objectives and let it happen. To be an artist first you do a thousand paintings. Look up Paul Klee, Kandinsky, and Marc Chagall. Try liking colors and playing with red and yellow giving you orange, blue and red giving you purples, and yellow and blue giving you greens. Learning to enjoy doing it is the real reward.
Like movies:
It Happened One Night Philadelphia Story The Goodbye Girl Young Frankenstein Blazing Saddles Animal House Overboard Groundhog Day The Pink Panther (original) The Mating Game (Debbie Reynolds) Some Like It Hot The Odd Couple You've Got Mail Love and Death (Woody Allen)
I almost never watch a movie more than once, but I've found that I can re-watch "The Quiet Man" and also "Moonstruck" once in a while. If you like Star Trek at all, "The Voyage Home" is one of the better Star Trek movies...full of humor, hope, and good feelings.
The other day TCM ran the 'Ma and Pa Kettle' movies. Hb was watching hockey and I was in the bedroom watching. He kept coming in to see what was so funny. Then they ran a series I don't remember ever watching "Five Little Peppers'. They were do cute. The little girl reminded me of Shirley Temple movies.
My Cousin Vinnie is a good one. The two yutes. (the two youths in joisey) I missed Moonstruck. One of my favourite movies. The last section I play over and over. She's kicking the can on the way home with a lovebite on her neck and Johnnie ain't in Sicily no more. Alla familie!
Cat Ballou (Lee Marvin is fabulous) Butch Cassidy and The Sundance Kid (You just keep thinking there Butch. That's what you're good at.) Risky Business (Tom Cruise first movie...the dream is always the same) The Producers The Twelve Chairs Topkapi Travels With My Aunt The Secret Garden South Pacific Ferris Bueller's Day Off (OOOHHHHH YAHHHH bomp bomp) Stripes
Father Goose - someone mentioned this not long ago
Just listened to the "Fight Song," which I had not heard before. Maybe instead of "getting," "seeking," "grabbing," "catching," or "finding" our lives, we should be "taking back" our lives.
Myrtle your right getting, seeking, grabbing etc but I'm not sure that " taking back" can ever happen. Maybe we need to build a new one as the old one is never going to be there for us as it was. It's just memories now, some good and some not so good, but it is gone.
For several days, I've been thinking about the correct word discussion here. "Lifegetter" was the original word and I believe that it came, as Wolf said, from "get a life." No where does it say that that life is the old life, the preAD life. Just get a life because it is out there. It is our choice to grab it or not.
Any of these words work in the context. I just like the idea of someone saying, "Well, get a life, already," and responding to myself, "OK, I WILL get a life!" knowing it will be another very hard job inventing something new but this time with good feedback.
The key here is that we can never go back to what we had or who we were. We have to reframe our lives and ourselves with who we are at this time. No one said it would be easy. But think of how hard it must be learning to walk. Do babies ever decide not to walk because it is too hard to do? Of course not. They want to get into the river of life and run with everyone else. They fall down a lot and sometimes get seriously hurt learning to walk but they never give up. It is true that they don't have the history that we adults do that can mess with our minds and motives, but we do posses the ability to over-ride fears like that.
This sounds like preaching and I don't mean it to be. It has taken me five years to get to this point and understanding. And I know full well that some incident tomorrow may knock me flat. But what I have learned is to keep trying to get up and move forward just like a toddling baby. Because, in the end, what other choice is there?
I agree it's a somewhat different life but I think it's key to understanding more to realize all that is BS.
You could take the total get a life efforts of all the stars here (me too) and you couldn't get enough combined effort to butter a piece of toast.
That sounds like a knock against us and that's the problem right there. All we really know is that if Mr Right suddenly falls off a tree beside you, problem solved. We also know there is a sizable majority that do mention they're doing fine but mostly get on with actually getting a life.
Working your stomach in a knot deciding whether to go to the social stand around for an hour thing is not GET A LIFE kind of effort but I don't (think) we should be looking at any of this like a drill sargent.
Here's a maxim: the better you can treat yourself and the more you can find a little fun here and there, the more likely it is that you will get a life. Not easy. Everybody pretends it is. Here's your first assignment. Learn to love your gut - I mean tummy. Learn that all of this is you and that is a major, major statement. Learn some guy think.
Man walks in a room. His body is twice the size of anybody else's. He holds his stomach laughing "meet my new friend" because the truth is he doesn't slink around thinking he's inadequate even when he's alone. Poor woman beside him is half his size but worries twice as much that she's not svelt enough. That is male dominated world thinking right there. You're not good enough and men decide that. Bullshit slave. Liberate yourself.
That's just one aspect right there. There are dozens of aspects that really do change us and in this case help us.
Here's your first assignment:
First define what is inadequate about you Second go find people walking around more inadequate in that specific way Third judge them and see them only by their inadequacy Fourth realize you're starting to approach how you quietly think about yourself
Women are completely oppressed still in my view and all because you aren't itching to kill and keep proving you are so that men finally take you seriously (what a planet!).
We got a new prime minister. Check him out because he's easy on the eyes for many. He appointed his cabinet and for the first time appointed an equal number of men and women to positions. When asked why he answered because it's 2015. You may be cheered up by that but I am not because it's him that is going to get an education. Men do not want this. Men want virgins. Because virgins don't know how badly they're doing it is the only reason I can think of.
Take your power. Start with your image of yourself. Get a life not be a rug.
I'm not sure where this thread is going. We're trying to figure out strategies for dealing with multiple losses...we all have the main one...the loss of the spouse we used to know. Many of us have had multiple losses, whether it be the loss of more than one family member or the loss of a home, or the financial losses associated with caregiving. Some have lost their own health while caring for another...or at the very least have seen their health deteriorate. Some have lost friends for various reasons...commonly because friends can't always handle the horror of Alzheimers, or sometimes because of the geographical moves that have been made. I imagine that some have had friends die during the long years of Alzheimers caregiving.
There are several posts about "getting a life." Well, yes...we need to do that. But whether you're saying "get, grab, seek, seize" or whatever...how do we do that? When we have been blown into pieces by the Alzheimers caregiving, and then something else comes along like a steamroller and flattens the exploded pieces...and then something else comes along like a backhoe and buries the flattened, exploded pieces under mud and dirt...well, then what?
It looks like we all agree that watching light entertainment and incorporating the "Fight Song" lyrics into our heads can help. These are good, concrete suggestions. I think Wolf is suggesting that we need to enhance our self-image, but I don't understand specifically what he's got in mind. He says we should treat ourselves better and also have a little fun. Other than our movies that we're going to watch (I'm looking for silly, fun holiday movies), what are some ways we can treat ourselves better? Specifically and concretely, I mean.
We are probably all more-or-less anxious. Here is what a poster on a financial/lifestyle blog that I read said about alleviating anxiety: "A really great self-care regimen including exercise, a clean diet, enough sleep, and a contemplative practice like meditation might help a bit."
Someone still actively caregiving at home probably couldn't do this, but if the spouse is in a facility or has passed away, this could be a good basic strategy for moving forward in a healthier direction.
Talking about a "new life" is fun and I guess I got all excited when I heard the "Fight Song." Although it's tempting to think about trading this life in for another one, I have to admit that between taking care of my husband and trying to get everything else done, the last thing I need or want is a new life. I already have a life.
I agree with Elizabeth that this thread got tangled. If you are experiencing multiple tragedies and serious problems, it's probably hard enough just to get out of bed in the morning without having to worry about seeking, getting, or grabbing a new life.
I think we're looking for ways to survive, enhance, enjoy...find some meaning, happiness, fulfillment...a way forward...with the life we already have. I agree with Myrtle that trading in our lives for other lives just sounds exhausting and (to me) kind of weird. What we need are strategies to re-build the lives we have now in an authentic way that is good for us.
That is hard enough for "regular" Alzheimers misery. But when there are compound losses of various sorts, what then? I am kind of rolling thoughts around in my head. First of all, I do agree that the grieving process will take even longer than "usual." (Whatever that is.) Secondly, I think self-care becomes even more vital. We need to think of nutrition, exercise (preferably outside), sleep, and contemplation (also good outside) as crucial to our well-being. I tend to think affirmations are silly (those little pieces of paper you tape to your mirror that say "Think Pink" or whatever)...but we do need something positive and inspirational to help keep us going, so things like "The Fight Song", or those signs you hang up in the kitchen like" Happily Ever After" , etc....can only be to the good. I guess there's even a place for "Think Pink." lol
Our lighthearted movies are a good idea of course, but I think playing music that we enjoy is probably a help, too. I honestly have discovered that sitting for a while just before bed watching Youtube music videos makes me more relaxed and ready to get into bed (where I read, maybe write a little), and it helps me sleep better. I'll wake up in the morning with the last song still kind of in my ear. (I always used to hate it if Larry had some violent cop show on TV just before we went up to bed--it made me kind of edgy...not relaxing at all.)
Anyway, I'm just brainstorming. I think I've said some of this before, but it keeps coming back to me. Pets are probably good, too. I miss not having any animals, but of course I was afraid Larry would trip over them. Now I don't want to get a new pet and then have to drag the poor thing 400 miles out-of-state. I'll wait a while, I think, but it sure would be nice.
In terms of meeting new people...I don't know. I think that in pursuing activities we're genuinely interested in, we're bound to meet other people who are also there because they're genuinely interested. Who knows what the future might hold. For people still actively caregiving, joining activities may not be possible...so again, we need to work hard to nurture ourselves and support ourselves...because there's nobody else around capable of doing it.
I don't think that "grief overload" accurately describes this situation. Some of this stuff (calls from lawyers and social workers about suicide attempts, trying to address a spouse's extreme behavioral problems) doesn't really have to do with grief. It seems more to me like "negativity overload." You just can't get away from the constant barrage of negative stimuli.
A lot of the suggestions -- funny movies, music, etc. -- are good and I also think that giving your creativity a workout (through crafts, music, or art work) helps. I'm posting a description of a practice that has helped me, which I call (in my typical contrarian form) the Anti-Journal.
Maybe I should have titled the thread "Multiple Tragedies, Serious Problems, and Negativity Overload" to factor in both people who have had more than one big loss, but also those who are just crumbling (or trying not to) under a barrage of dire Alzheimer-related disasters.
Sheesh, real life issues will do you in. I'm headed over to the Lodge on the Edge of Forever. The sun is almost over the yardarm, and that means I can spike my eggnog. Wahoo!
The title is fine. (The "Serious Problems" part of it includes the negative stuff). I just wanted to note that grief is not the only problem for someone in this situation. I did not intend to drive you to drink!
I agree with Joan and others that this thread is a good thing to try and do.
I believe that with those facing extraordinary things and those facing just ordinary horrors that everyone else runs screaming from - the main key is that they know they can reach out and we will answer.
It's very hard when the bombs are going off overhead just to survive the moments. What's imperative in my mind is to remind them that we are prepared to help them.
I propose that Joan consider formalizing a rule that while the board is for spouses only when you have another dementia also enter your life, that it is valid that you can post here as a full member. That will take away any of Frank's reluctance because that rule would apply to everyone in such a situation. It's just a suggestion.
We should also encourage those who are quiet but have need. Who suffers the most and who has the most need at any moment isn't soley determined by the events but also by where the person is inside at the time.
During the time we have been dealing with dementia, I lost my mom, my wonderful sister and best friend, three dear cousins I grew up with, and now my husband in a nursing home. I still haven't truly dealt with my sister's passing. I went with her to every doctor's appointment and two difficult operations for her pancreatic cancer. I sometimes holler at her for leaving me when I need her so badly. The upshot is that her sons and I have become especially close and they are involved much more with my family, and I am so grateful for that. I came here to post a lot early on. Now, I read everything but find it hard to post. I don't know why.
I don't know what I would do without my books. I try to lose myself in them, hoping the thoughts about my life with my husband in a nursing home will go away for awhile. I wish I lived in a more rural area so I could more Nature around me. Music soothes me too. I also had to undergo for health purposes some relaxation and breathing techniques and they have helped to calm the voices in my head. I just turn on my iPad and listen to the ocean and the soothing voice that helps visualize sitting on the beach,letting the water cover my feet and the sounds of the ocean fill my head. I didn't think this could help, but it really does.