After reading Myrtle's post where she mentions self pity - I can so relate.... I know I'm feeling sorry for myself too often for my own good. Is anyone else doing this - please tell me I'm not the only one..... I know it's not good, but I'm having such a difficult time not doing it. I just can't seem to stop it. It's hard for me to find positive things. I've just returned from spending 12 days at my son's out of town. I felt very good there - I actually felt happy - being in a different environment really helped. My son noticed I was happy but he also noticed I was negative about many things in my life. I just can't seem to find happiness in the good things in my life. Is anyone else having that problem & what can be done to improve it???? I don't know why I seem to enjoy attending my own "pity party" & I'm the only one attending....
Nicky, when I saw this title my native NewYork sarcastic self said Oh yeah, none of us can relate to this.... duh.
Yeah right. This is my struggle too. I get so angry at the way this disease is not only robbing hb of his mind and soul, but it is stealing me from me. Someone on alzconnected talked about Stage 8 Alz. There are 7 stages. She had a link and I read a description of the stages. I think we are entering stage 7. But they said there are 6 substages each of which can last 1.5 years on average. And the last one where they can no longer sit up and no longer hold their head up on their own can theoretically last indefinitely. OMG.
So after scraping a bunch of poop out of the sink drain, cleaning two bathrooms, cleaning one hb, then I was cleaning the pool - all before having coffee - I flashed back to when my little dog suddenly had a cancerous tumor in her abdomen. The vet said no treatment. She said it would be the very kindest thing to do for Rosie to put her to sleep. If I waited she would suffer greatly and it would not be easy to watch. But for people we have no way to deal.with this. This disease can slowly excruciatingly slowly kill two of us. And all the perky helpful people tell me look for the positive. Don't lose hope. What's the problem it's just like dealing with a toddler's diapers.... and on ad nauseum.
A few days ago I wrote about a different morning where he talked and talked and I had a bit of empathy. Well endless poop, cursing, and threatening destroy empathy. Is there anything going on in his brain?
I try to use Cognitive Behavior Therapy tricks on myself. When I am mired in this self-pity I try to ask myself if this kind of thinking is helpful. Clearly not. What can I think about instead? I don't like what I am doing. I don't like where I am living. I need to see my siblings. I am making to do lists and leaarning how to do all kinds of repairs to get the property ready to either sell or be what I want if I decide to stay. I write down the projects and physically cross them off for a reward. When I find myself in tears after being knee and elbow deep in poop I get hm settled and go for a walk. Yesterday I saw a neighbor we used to see all the time and met his Great Dane. That was fun and put a smile on my face.for a few minutes.
Pity party? never Feel sorry for myself? never Both lies. I hate my situation. I hate my life dependent on him. I do not have the poop or violence to deal with like bhv so I should be thankful. But we all know when you are trapped in this limbo with no end in sight, well for many we find no positive to smile about. I don't even talk with people much anymore cause when I smile it is fake.
I was talking to my friend who lives in Yuma - they were here a couple summers ago is when I got to know her. She had knee replacement a little over 2 years ago. She is highly allergic to nickel and they were suppose to make sure it was nickel free. Within a couple weeks her h** l started. Finally in December the manufacture contacted her doctor to say there is a small stainless steel pin embedded in the kneecap that is used as a reference point. It does contain a small amount of nickel but it is sealed in the kneecap. They replaced the kneecap in December. Finally the rash and open sores went away. Unfortunately she has been on so many different drugs the last 2 years trying stop the rash, open sores and knee swelling that her body is do messed up. He skin is like tissue paper - tears very easily. Her bones are think and brittle from all the steroids she has been on to keep the rash under control. She went in this morning for the doctor to bend her knee - under sedation. She was happy with it but he was not. Doctor on his way to a hip replacement said it went well, the knee bent nicely. When she was getting ready to leave he ran in to her room, told her not to go to PT because they broke her leg when he bent it. That explains her excruciating pain that nothing will touch, unable to even put weight on her leg. She already has been on fentayal patches and hydrocodone for just to keep the pain tolerable. She was so hoping that she could get off the pain meds and be able to drive again. Yesterday she was out planting flowers - today she is confined to a wheelchair in horrible pain. My heart cries for her, she has fought through so much the last two years. She went from 160 pounds to 90 pounds. She had gastric bypass surgery about 10 years ago, so getting nutrition is hard. She has also had surgery twice for bowel blockage due to all the medications. I would have given up and probably OD on the fentayal. She also has the type of marriage where they fight like cats and dogs but seem happy with it.
I have it so easy compared to her, bhv and many others. Do I really have room to be depressed and feel sorry for myself? I have to remind myself that we each handle the same situations differently. There are those here who have handled the poop as just another stage of the disease, just another job to do. I think of divvi - the poop queen.
Charlotte, what a very, very sad situation for your friend. After having read that, I felt so foolish for pitying myself... What an eye opener. And also, I'm no longer in the "trenches" like some of you, so I really should not be feeling sorry for myself - I could have it so much worse & it was worse for me when he was at home. And of course, I've been saying to myself 'I could have it so much better' - I must stop that thought... I have the bad habit of dwelling on how our life should be & comparing our life to others that I know who are enjoying their golden years.
So, I will be working harder at focusing on the positive. I've done it in the past, but it doesn't last very long. So today when I visited him, I reminded myself to focus on still being able to see him, hug him, hold his hand, walk with him & enjoy the fact he still knows me. He told me he loved me, that I was beautiful & was kissing my hand - all positive, although I was crying, I still told myself to enjoy it while I can & I did. Then he noticed I was crying & asked me what was wrong - he was still concerned about me - made me cry even more... I think changing our focus from the negative to the positive is an extremely difficult task - at least for me. I also know being negative is a waste of my energy.
Today's visit was even more difficult, because I've been away for 12 days & I have never left him for so long without seeing him. I could see by the surprise & happiness in his eyes that he was truly happy to see me. He wouldn't let go when I hugged him. I know he has no concept of time, but by his strong reaction I can't help but think he somehow "felt" he hadn't seen me for a while, since I usually visit daily. Just wondering if anyone else thinks they can somehow "feel" or "sense" when it's been a long time between visits?? Or is that just in my mind?
There's something to remember about self pity. If we knew someone we cared about, who was exactly in our situation, we would certainly feel pity. Words don't house meaning. Change pity to empathy or sympathy. We should be feeling some of that for ourselves because we're not human if deep in there we don't feel this.
The son compared Nicky to her normal. That's pretty good when we can still be happy and it's pretty good that the son sees the wear and tear on the sensibilities.
Remember also that many of us have felt that letdown after we have a period of normality we plug into. Part of the reaction is almost surely that return to the 'dungeon'.
There was a night, one particular night and much to the distress of my neighbours, that I opened the window and screamed out into the night that I was sick and tired and wasn't going to take it anymore. I remember waking up the next morning shocked that I did that. I'm sure they heard me blocks away. Never mind.
We all deal with it differently and most of us jump around being bobbed on a string like this but I say do not gently go into that goodnight - howl at the moon, become nothingness, out stoic a statue, weep endlessly, take no prisoners - it all works. Take a good look. I did. There aren't any style points awarded. Never mind.
I started to believe. I lost a whole paragraph, what a pity. i thought some of my best writting, was lost. what a pity. It is too late for one left pointer finger wrighting while lyin on side with with kindle in bed. ,Now thats self pity.
bhv, IMO, empathy is not the goal. The goals are (1) dealing with our spouses more effectively, and (2) making ourselves feel better. When I was in the thick of things, what worked for me was detachment. I would step back psychologically from the situation and tried to think and act as though I were a professional aide or nurse. This enabled me to deal with him more effectively because my negative feelings (anger, grief, frustration, disgust) were not obvious to him.
Detachment also made me feel better because stepping back from my negative feelings allowed me to take vacation from them. (It's impossible to feel better if you're constantly getting angry or frustrated.) It also enabled me to be kinder to him, which was very important to me. I realize that this kind of detachment or compartmentalization would not work for everyone.
I've often wondered why you are doing all that heavy-duty outdoor work. It's hard enough caring for a demented spouse without also having to rebuild physical infrastructure. I made a similar mistake by continuing to do stressful legal work at the same time I was caring for my husband. I did it because I thought I needed the income to support us and because others (thinking I needed something else to focus on) encouraged me to do it. It was only when my husband was near death that I got professional financial advice and realized I could still afford to live in my house without working myself to death. Can you figure out something that will allow you to maintain your property but give your body a break?
The bottom line is that if we don't take control of the situation, the situation will take control of us. That means getting practical help in caring for our spouses and also finding the philosophy or mind-set that works for us. For example, although religious devotion or an optimistic outlook might work for some, neither approach would be consistent with my beliefs or personality.
OTOH, even a pessimist needs to be able to recognize bad advice, like that given by the person on alzconnected who said that the last stage of Alzheimer's was where the person can no longer sit up or hold their head up and that this could theoretically last indefinitely. IMO, that is a crock of poop.
Hi Nicky, I'm glad you were able to feel happy in a different environment. As far as feeling negative about many things in your life, isn't that normal, given your circumstances?
I completely agree with Charlotte about feeling forced into dishonest reactions and fake smiles. It's easy to fall into the "others have it much worse" mentality and discount our true feelings. Like many children who grew up in the years after WWII, I was met with the "think of the staving children in Europe" argument when I refused to eat beets or liver. Well, that was then and this is now. As Wolf says, pity is basically the same thing as empathy or sympathy or compassion. So have some for yourself. I'm so glad you got out of the Alzheimer's environment for while. And it's nice that your husband is happy to see you back. Hang in there.
Hi Rodstar, I never thought of it as a "slow divorce." In fact, I've never viewed loving someone, whether they are well or sick, as connecting with them only through my emotions. I believe that we can love someone through our intelligence as well as through our emotions. When our spouses get Alzheimer's, they start to lose their cognitive intelligence, so our own intelligence is a gift we can offer to them. I'm not just talking about business-type decision-making (whether to hire an aide, where to place them, etc.), but also about what things, including the ways we interact with them, will make them feel loved, secure, and (when possible) happy. No one knows them better than we do and no one knows better what they need emotionally. To love them with our intelligence requires us to sacrifice our own momentary emotional needs and to look at their needs clearly and what some might describe "unemotionally." In other words, to detach ourselves from our own needs, for a moment or a few hours or even longer. You are right in saying this is impersonal -- in fact, it can be kind of phony -- but in another way, it is deeply personal. In most cases, it's more valuable that showering them with emotion.
Hi myrtle. Thank you for your input/insight. I think most of the time I practice detachment mostly to take a.vacation from the negative emotions of being stuck here with a person I do not recognize. I frequently pretend it is my job and sometimes I don't enjoy going to work and I just do the bare minimum.
There are so many lovey dovey types out there that sometimes I feel pressure to try to put myself in his shoes and try to have empathy for how difficult this must be for him, how scary things must be and how I shouldn't be needlessly cruel and I should make it my mission to make sure his remaining days are as enjoyable as possible and, by all means, maintain his sense of dignity at all times. That is a lot of shoulds.
When I get into that loop I pull up one of Lindylou's posts where she describes all the tasks a crew of workers perform before lunch time and I decide which role I choose to play for this hour. And then decide about the next hour as it comes.
I like doing the work outside and figuring out how to repair things. Today I fixed a sink he broke the other day. It was difficult to do, but I smiled when I figured it out. If I decide it is too much I can hire my neighbor's gardener or call a plumber or.whatever. It helped me lose some weight over the summer and build up my strength. Now I have gained the weight back. Oh darn. I got a sensor and put it in the bathroom so if he gets into a mess in there and I am on the hill the receiver will beep and I can go running.
It wasn't a person saying that last substage could last indefinitely, it was a medical study they linked to.
bhv - like you I detached. In fact, I did it early on in the disease. It is when I stop the detachment I find I go into the deep depression. Yes, detachment has it own set of problems but I would rather them than constantly remind myself what he has lost and what I have, how boring mine is with the same old same old every day.
You are probably a lot like me - gardening relaxes me even if I end up sore. Otherwise it is therapeutic. Can't wait until spring comes and I can start to figure out how I want to do my flower pots this year.
I also find gardening relaxing, but in my caregiver days, there was very little time for it. I was still working, so I had to use the hours I gained from daycare for work. (Not to mention that we have a very short growing season.) But it was wonderful when I was able to that.
bhv, It sounds like one of your worst problems is poop management. I know that would have done me in. It's too bad that we don't have an on-site poop specialist here to give you advice. So many people mention divvi as having been an expert in that area. She was before my time here, but it sounds like she really had her stuff together.
I agree that detachment is the answer, but I've hard a really difficult time doing that. When I finally accepted that we have our own separate lives - his in the facility & mine outside of the facility & that he is no longer part of mine, I felt much better. But I still need to work on other areas - just can't seem to stop feeling attached to him.... I feel so connected to him - like Siamese twins.... not a good thing. I'm glad detachment was mentioned - it will make me work harder at achieving that.
i am looking foorward to at least a little different detachment. It will be different, hope we can make it work. Being away from her. when your you are are atached 24/7-365 but your feelings change because your attachee changes you fell different. i would nevver have been attracted to her the way she is now. I woulf have drooped her in a sec. But now i got all these memories,promises,past love experances, all slowly bein crushed. if I did not detach I would go coco. That dtachmant is while next to her. fogive me, but i just have to go gthrou the motions. Others say look at that cute couple. They stey still hold hands. If they only knew. That another form of dtachment.
Detachment something this morning I was wishing I could do better. Yes I now have a life and yes it is going very well but like right now, when we are in crisis mode it just permeates my being. It consumes. I think I mentioned the facility feels they no longer can handle Lisa safely she has to move. The placement coordinator says she cannot place her anywhere else until she is more stable. She now has been referred to tertiary care but that is a whole other process could take weeks. She is not safe where she is so I have to provide 24-7 companion for her to be safe and because if something else happens she could end up in the hospital. Even though I feel I am fine I know that I am not. I know that I don’t have the resilience I once had. The whole situation just eats me up, feeling of helplessness. I have to get over this, but then the big G shows up, guilt. As Charlotte you said reminding myself of what I have and of what her life has become. Feels like a treadmill that never ends you just keep going, I so want it to end for her sake and for mine.
Nicky, When I recommended "detachment" (I'm not even sure if that's the right word), I did not mean creating a long-term emotional distance between ourselves and our spouses. What I was suggesting is a momentary or situational detachment, to allow us to get through a specific task. For example, when our spouse does something awful (spreads poop all over, breaks an expensive machine, makes a scene in public, etc.), instead of getting upset or angry, we might try to assess it as if we were a professional hired to handle the problem. As bhv put it, treat it like a job.
Or just do it without thinking about it. For those who had children think back to how you dealt with dirty diapers, snotty noses or even throwing up. Only way past was try not to think of the smell and just get done what needs to be done.
I like both Myrtle's and Charlotte's thoughts on detachments. I have had to use these methods to survive. You do what you got tto do to get by any bad situation.