Overcoming resentment at the belaboring chore that never ends,,,then comes Guilt at thinking this way as it barrels down the thinking process.....as they become weaker you become more helpless.....tired,this assuming you have a good relationship and there is no baggage....then the big one money....did you think that
incontinence would be easy....cleaning the house...trying to do all the work many times is not wanting strangers around the house .Its not the money to pay them really..............
its just one gets sicker,oldermdoctors appointments,vigilance,cooking,special food as the chewing becomes an issue,pill taking..........its a nightmare depending on the specific case,here there were 2 people one 90 and the other 97 and my brother the all important caretaker companion dies before the 97 yr old....what can i say...the entire process is something that goes in different directions...meaning how everyone will accept their job in the dying process ,best is if the child can cohabitate with the parents provided he is not married or encumbered by having a job etc.
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The disabled person ( for the most part) is particularly vulnerable to feeling like a burden suddenly coming from being the strong one in the family to being sensitive, demanding, overloaded with drugs etc.
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Thanks for the info Cwillie. I suppose I have to be a little more understanding. It must be a terrible thing and it seems it really effects people tremendously, as I see it all the time. I had speculated that it was a result of self indulgence or attention seeking behavior, but I suppose I was wrong. It's a shame that so many people are living with this guilt when it's so misplaced. I guess it's a result of how we are taught growing up.
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You are right Sunny, much of what people call guilt is really disguised anger, resentment or some other emotion. Some of us do feel guilt however, because we are always second guessing our choices and worrying that we are not doing enough. There are also the times when we lose our cool and say or do things, or avoid doing things, that we later regret... also a legitimate cause of guilty feelings.
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Can you share more about feelings of guilt? That part of caregiving always intrigues me. I just don't understand why people who are doing their best in care taking feel guilt. I've read on this board that it's quite common, but I really wish I could find an article about it. I always thought guilt was an emotion you felt when you believed you had done something wrong or were not doing the right thing. If that's not the case, then is it really guilt or is it anger, resentment or something else?
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What about the overwhelming feelings of guilt, helplessness, and glaring reality the disabled feels anger, resentment, caregiver lashing out at the disabled if the disabled shows irritability and blows up. Sudden disability after being totally independent is shocking for everyone and caregivers are not prepared to have a change in roles,
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I have been caregiving my mother for two years with Alzhiemer and other medical issues. My job is not easy "one fall could make her bedridden her bones are brittle severely) severe osteoporosis. She doesn't listen when using her walker and shows off. I just lost my dad in 2013 which I was also caregiving at times. then 6 months later my mom has TIA's and Alzhiemer which I had been noticing for months and had her checked with a Neurologist. I have 4 brothers who are in denial and stay away. I do know of the breathing exercises and the mind get away but it seems harder to when as the stage progresses. Do not have a life. always canceling at the last minute when I make plans. In a small town can't find help. This job is tough and mentally stressful. It is hard to watch the decline.
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Thanks, Ann Marie. I needed to read this. Perfect suggestions.
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Thank you Stafford for replying and I'm sure you are right
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You weren't wishing he would die, but you were looking forward to the freedom that would come to you after he had passed on. You are disappointed that freedom is further away than you thought. This is a thankless job and the sooner it's over the better for me and the better for my 62 year old husband.
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I am a 24/7 care giver for my dad and Just recently for two weeks my 90 yr old dad who has CHF and dementia started sleeping most of the time wasnt eating or drinking hardly anything was showing all the signs of end of life steps so I was preparing myself for the final goodbye, I let family and friends know how/what he was doing. Then all of the sudden he just got up started eating and drinking as normal, going for his walks and I was so upset and felt stupid for telling everybody that it looked like he was preparing to part from this world then didn't... Has anyone else gone through this with their elder? Is it normal to get angry at your elder for not passing?
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I don't know if this is mindful awareness but I recommend taking breaks away from dealing with a difficult person you have to care for, that is, if you don't live with them (whcih I would have no idea how to handle!). Our family members seem to go through cycles of anger/blame etc. so everyone once in a while I consciously "don't visit. don't phone call, no email etc." If other family members contact me I just say thank you for the updates, etc. This tactic works for me -- I just withdraw into "cool down mode" and sit back for a while. Then I just come back into the situation to do what I can do or have time to do, even if everyone else is screaming at me (e.g., Sister yelling: "How could you not visit your mother in the hospital?") or sending me toxic email (Brother sending email: "I'm not contacting you anymore unless it's through Family Court"). This way you won't get worn down, you stay rationale, and don't get drawn in the drama queen scenarios that everyone else is creating. And you will be more helpful to your difficult & manipulating parent.
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Excellent ideas. I'm taking care of my 90 year old husband who has moderate cognitive impairment. I am 73. He has always had a "go with the flow" attitude about life which has been very helpful. I get very overwhelmed with all the daily responsibilities that I can't discuss with him any more. I've always tried to find something positive about nature at the time I am feeling out of sorts and just concentrate on that for a moment or two. There are usually squirrels doing something nutty, cloud formations in the sky, flowers in my garden (another good form of therapy). I'm also learning to take my "breaks" in 5 and 10 minute intervals instead of hours or afternoons on the days he is not in daycare.
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A part of caregiving (that I didn't realize at the start) that makes me feel the way I do, is that I didn't count on all the years of my youth flying past me. This combined with no (sibling) help, has taken a lot of (extra) work to fight off the 'bad/angry' feelings... And, this 'extra' work (on top of caregiving) has just added to the stress, etc. I'm working to address all this... I know being guilty, angry, etc. just works against us... And, I want to be happy again to be able to enjoy the rest of my life.
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When I'm tired and need a rest or break, I ask my husband to come and take a nap with me in the TV room. If he's not sleepy, I ask him to lay back and close his eyes--soon he is asleep. I wake up rejuvenated--he's often sitting and watching me as I wake up, but waits until I'm alert. Another technique on mindfulness/prayer I do each night is to open my hands and let go of stress emotionally and physically using deep breathing and emotionally surrender. For some reason this has given me unusual strength to do my 24/7 caregiving.

My husband and I go to the gym routinely to lift weights and work out aerobically. This helps reduce stress for both of us. He says that lifting weights is about the only thing he knows how to do anymore. The exercise refreshes both of us
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Stafford I am so sorry this discease is horrible when you watch someones mind go like that knowing there is nothing you or the person with the discease can to about it. My dad is at the point where he swears something is a certain way and he fixates about it no matter how many times you tell him what he is thinking happened isnt what happened then he gets angry and starts threatening to kill people or himself and I'm not sure what to do when it gets to that point because a while later he will act like the conversation never happened while Im still upset and freaking out. He insists on going for walks on streets that have a lot of traffic and if you ask him not to he gets mad and says he's 90 yrs old and can do what he wants. We are seriously thinking about putting him in an ALF for his own safety and possibly mine too :-( i know what you mean about the cursing I can't stand listening to the things that come out of my dads mouth. I pray we are both able to find strength in dealing with our situations
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Notsopatient, my husband wasn't nasty, clingy, and unkempt before this disease took over. He was pleasant, strong, athletic and adventurous. Now he's miserable to be around. He goes up & down the steps 100 times a day & has to report it to me each time. He curses about everything & nothing. He is hard to love. It takes everything I have to tolerate him.
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Thank you Stafford I can't imagine what it would be like if I was dealing with a spouse in that condition I pray you are able to get some repreave. My dad just turned 90 and has CHF needless to say when I took on the responsibility of his caregiver 2 yrs ago none of us expected him to still be here. It wouldn't be so bad if he just wouldn't say some of the ugly hateful things he says and I should be use to it because he has always been that way but I didnt have to listen to it because I tried to stay away from him and his negative attitude, it took me a long time to get away from that but now that Im living with him I am going back to being negative myself and I dong like it. Thank you again for letting me ramble and vent it has helped tremendously. I will keep you and your husband in my prayers
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I share a lot of your frustration. In my case it's my 62 yr old husband that has the disease. He is mean & constantly shadows me, I, also have wished I would die. I have no life. Each day is filled w/frustration & anger. However if I died this would be someone else's burden. The only words I can offer are "you're not alone".
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I have so much anger built up that at times I wish I would die. My dad says some really not nice things and it fristrates me when other family members who aren't with him ALL of the time like I am and don't have to listen to him ALL of the time tell me to just ignore him, needless to say that makes me even more angry. I try to tell myself not to let things he says or does bother me and I tell myself someday he will be gone and I will be able to have my life but how long is that going to be? Thank you for letting me ramble it doesn't help that I have a sinus infection and don't feel good.
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I think there many factors as to how much of a burdrn care giving is. But taking time to focus certainly helps lessen the load. Just taking time to breathe.
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Oh... I thought this was not only well-written, but a great reminder for us caregivers to check in with our selves. As this article states, it's not easy but, every little bit helps... a lot!... Thank you!
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I agree that mindfulness in the midst of all this is difficult. At some point you need a long break, a vacation to spend time, energy and thoughts on yourself. I was at the end of my wits, took a month vacation (I was lucky to be able to do so) with Dad in respite (VERY expensive). I was a bit "shell shocked" when I came back to the same situation, but it was easier to get back into doing chores one step at a time, with a time out if I felt overwhelmed/angry (at what? nobody is doing anything negative on purpose).

I watched the curious case of Benjamin Button recently. It is very good and captures the mixed emotions of loving and caring for someone. I also try to go for a 30 walk outside each day when Dad is most settled in.
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Very helpful. I used to enjoy being needed and felt contented most of the time, but lately I am thinking"It's so hard. It's getting harder every day. If only my husband could show me some sympathy or affection. I feel so unloved." All of that is dragging me down.
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I have found no joy or fulfillment in this journey. My husband is mean, unkempt, has to have me in his sight. I am miserable, hate to face each day. Try to find something positive in this experience. The only thing positive I can find is he's lucky to have me. No one else would tolerate him.
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Like many other caregivers, I am tired. My dad is 91 and I dream of life after this phase is over. My whole life is affected and there seem to be few good times. We did have a cup of coffee early the other day and it was like it was 20 years ago...catching up, laughing, etc. Then he started fidgeting with everything and the moment was shot. I am afraid my memory will be of the person my dad has become, and not the man I adored growing up. I am not taking care of myself. I hope I can catch up when he is gone. I end up staying up late just so I can have a quiet time. Music at night is very helpful for him. When he wakes up, it seems to lull him back to sleep. I think we all agree that this is a very tough time in our lives. (Did I mention that my house is a wreck?)
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I started accupuncture about a month ago. The 30 min. session gives me quiet time and relaxation. After ten 1/2 years and counting I'm sorry I just now started to do something fo myself. Being still does reduce the anger. No out bursts from me also cut soda out of my diet. Maybe the surgar and caffeine made me hyper and angry. Good luck to all fellow caregivers the burden is real!
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Well...it's been 6 months...and I still haven't gotten the hang of being "mindfully aware." Don't have time for that - trying to discipline my active beehive mind to slow down. The yoga for neck pain works great but I find myself "rushing" thru the moves because I have no time to sit, breathe, concentrate on your body, etc... Physical help is much more practical - but harder to obtain.
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jeanne... I TOTALLY agree with you! In the last few years I haven't had 5 or 10 minutes to sit and "be aware" of my surroundings! If more relatives would step up and help shoulder the burden of caregiving, then I would be under less stress!
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I think that caregiving feels like a burden because it is a burden. It isn't as if I wouldn't have recognized that the long goodbye was agonizing if the media hadn't told me it was. Non-caregivers don't seem to get it no matter what the media does. Friends and family members don't understand why you may need to cancel out of engagements at the last minute, why you can't help out with other things as much as you used to, why you seem tired all the time.

If becoming mindfully aware can help caregivers cope, great. And I am a believer in the power of words.

What would probably help even more is help -- actual people and supplies and equipment and PEOPLE to shoulder some of the burden. To provide respite. To manage the medications. To clean house. To do laundry. To bring in an occasional meal. Money to hire these people, to pay extra for ready-to-eat meals, to hire transportation. Medical professionals who treated you as a care partner and not an annoyance.

Practicing mindfullness may be great to help reduce stress. Having less to stress about would be even better.

And for heavens sake, let's hope the media doesn't start depicting caregiving as a pleasant way to achieve deeper bonding. There are few enough people who recognize how tough caregiving really is without false messages!

(BTW, I cared for my husband in our home throughout his dementia journey. Knowing what I know now about what a tremendous responsibility and burden this is, I would do it again without hesitation. It is not JUST a burden, and there are definitely rewards. But the burden is real.)
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