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How do I deal with the stress, frustration and anger associated with caregiving?

55 answers | Last updated: Jul 09, 2014
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Caring.com User - Maria Basso Lipani
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Maria Basso Lipani writes a popular website on geriatric care topics, where she puts her expertise as a Licensed Clinical Social Worker to...
83% helpful
answered...

Thank you so much for your honesty. Although it’s not often discussed, so many caregivers are standing with you at the same crossroads. The care they provide feels all-encompassing and See also:
Feeling Anger When Giving Care

See all 304 questions about Difficult Behaviors
they’re lost in it - unable to bear any more and tempted to let the load down.

I wish I had a quick, easy suggestion for you that would release you from the intense feelings you have, but I know of only one way forward and it sounds like you know it too: to make yourself a priority again – someone who believes she deserves rest and will not substitute other peoples’ judgment for her own on that point.

You can take the first step and find a caregiver support group or reach out to a therapist for counseling right now. You may meet resistance as you have in the past, but muster your strength and push past it. You can’t force your father to spend his money to hire help so that he won’t be swallowed by caregiving, but you can set a limit at being swallowed yourself.

 

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Friendma answered...

For ten years, I have been primary caregiver for my husband who has Alzheimer's. At the encourage-ment of our doctor and other family members, I have finally reached the decision to place him in an assisted living facility for ALZ patients, using false pre-tenses to get him there. He'd never go voluntarily! As with a parent traveling with children, you have to put on your own oxygen mask before helping your children. Save yourself or you're no good to anyone else!

 

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Spockula answered...

My situation is different, but, similar. My hubby has schizophrenia, emphysema, ETOH issues, & other health issues. There isn't much support when we're in our 40's, though, if he were in a group home....you know! I also work in a locked crisis mental hl. facility. I see all sides of this stuff. It seems "they" want you either totally on "the system" or "off" if you're in between & asking for a bit of help....forget it! SAD! At least there are sites like this. & yes, my anger got severe! I'm usually very independent, & only ask for help when it's severe! Well, I asked for help & got no-where. I had to have him get his own place. He's still not getting help he should be. It seems I'm the only one he can actually count on! I'm going to move in next door. An "odd-couple" but, seems best answer! This is how folks slip through the cracks. I'm disgusted with the care. These people are alone.

 

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jpirrone answered...

As a caregiver who experiences burnout regularly, I agree with the experts who say you need to put yourself first. You need to operate from a place of inner calm to deal with the stresses of caregiving. When you operate from a place of exhaustion, you can't make good decisions for yourself or others. Find ways of filling yourself with good energy. What makes you happy? Do it.

 

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Deb V answered...

I also care for both my parents, dad with Alzheimer's, mom post-stroke and very possibly early stage Alzheimer's. Mom has always been hyper-critical, self-centered while viewing herself as the ultimate giver, and never at fault for anything. It's so important that you recognize what you're feeling, and acknowledge its validity. Do see a counsellor. I was already doing so when I started caring for them full-time since I have been dealing with chronic depression most of my adult life, and she is at once a ready reality check for my own condition and a source of information for some of what I have to deal with with the folks. My laptop has become a lifeline as well, to both current and old friends, and sites like this one which I've just begun to discover.

Based on their ages, your parents are children of the depression, and may be very fearful of what that time was like if their parents struggled to get through it. My mom cries poor all the time too, and although the recent financial upheavals have hurt their savings, they are comfortably off. Do you or some other member of the family have power of attorney to handle finances? That's really important, so that you don't have to go over all the day to day expenses with them--the less of that you have to deal with, the less stress, for you and for them. My brother handles the finances while I take care of matters "on the ground", shopping, providing them with expense money for hair care and such, taking them out to eat sometimes... Finally, is your caregiving a transition to some other situation--assisted living, a nursing home--or are you there without an end in sight? Your "stress-hardiness" (what my counsellor calls it) will be significantly improved if you know there's a light at the end of the tunnel, even if it's a good way off at the moment. Best of luck--I love the Hebrew word shalom--it's usually translated peace, but the concept also incorporates health, well-being, everything good--and I wish you all that too.

 

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West Sac Gal answered...

Chances are you have issues stemming from your youth. Not having faced these issues before you became the major caregiver can be sooooo stressful. Please get counseling. Dealing with a lifetime of anger at your parents doesn't get fixed over night but putting some of those issues to rest can be life and spirit saving. You have a chance now to be able to at least talk with them about it. Do it before they are gone.

 

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An anonymous caregiver answered...

I have to agree with "falling through the cracks". My husband had his first heart attack 12 years ago and things for him have gone downhill since. He has had 2 more heart attacks, insertiion of bipolar pacemaker, cardiac oblation for sustained atrial fibrillation, ruptured diverticuli with a colostomy, pulmonary hypertension, insulin dependent diabetes, obeseitiy, COPD, and numerous other complications. He has become bedbound in the last year, becoming very forget which makes him more depressed and angry. I have childhood onset seizure disorder which is under control but prevents me from driving. We live in a rural area with no public transportation. Our only child is married and she moved
1 1/2 hour drive from home. My husband is 100% VA disabled however the nearest VA hospital with facilities to care for his multiple problems is 2 hours away. I am an LPN and have fallen twice in the last year fracturing my left and then my right ankle while caring for him. I am 57 years old and because of 2 injuries in one year lost my nursing job after 31 years at the same hospital. There is very little help out there unless I go on MA which no one in my family has done and I am trying not to be first. I try to get to all local and federal community activities where I can voice my issues hoping someone will realize we are part of the population out there who don't want a hand out just information on what is avalable to us so we don't become a burden to our families or the society.

 

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jorcna answered...

I'm not sure if anyone is looking at the 'big picture'. Not asking for help- any/all you can get- seems to be everyone's answer. That is what it is there for!! Get help for your loved ones and for yourself. Ask! Go to local and state agencies. Ask if your church can help. It may be possible for someone to come in and sit with your family member(s) while you take a break. Even if it is just for an hour or two. You'll be surprised how it helps. Take advantage of any/all the help you can possibly get. Don't let yourself burn out. And don't let the anger get the best of you. When your loved one is gone you will regret it. Take the time NOW to talk about what is bothering you. Even if they don't recognize/acknowledge what you are saying it will feel great to just put it out there.

 

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Spockula answered...

We've asked for & rec'd help, though, not enough. I've talked for 10 yrs. He just doesn't get it! Yes, "venting", trying to explain, & lettin' him/others know how I feel, &/or why I'm upset/burnt out.....It doesn't help if things don't change! I, finally, had to take some action to care for myself! System still failing & needs to be looked at. This, probably not happenin' the way it should be. Our living situation has helped me. Hubby okay. We're workin' w/ what we've got! He'll never understand "my side"...but, our relationship is better, & I'm still there for him, as well as caring for myself, too!

 

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jorcna answered...

This answer is for Spockula: Complaining doesn't help. Talking DOES. It seems as if you think things will change just by your compaining about it. Unfortunately, that is not the answer. When you discuss what is wrong/bothering you- try doing it in a way that lets others know you are open to suggestions/help. Make it known that you are ASKING for help and will consider any information you can get.

 

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Spockula answered...

Jorcna, I'm not known for being a complainer! Not sure why you think this?! I'm a problem solver, & take action when necessary. I've been through a lot in life, as we all have. I've talked for 10 yrs.! Believe me! I've explained things in every way possible! Men, especially those with Schizophrenia do not think the same way most women do. I've/we've had all kinds of input from all types of folks! I'm a bit insulted!

 

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An anonymous caregiver answered...

I agree with several answers. Set limits with your parents and say this is what I can and will do. This may push your dad into getting outside care-giving. Sit down with a LCSW or attorney specializing in elder care and don't feel bad about your desire to restrain your parents and their manipulative statements to you. YOU set your limits and INFORM your dad. He takes it from there and they are his choices and your choices are obviously yours. Understand that your dad worked for all that he has and won't let go of it until limited by you. Give a reasonable schedule of help you can offer and take time for YOU! No one else will take care of you except you. We expect you to do that. To do otherwise is just foolish in my opinion and others will think just weakness in setting boundaries and limits. Be happy he can afford his own care.

To everyone here at caring.com I want to urge you all to contact legislators and the NCOA and tell your stories. Options for the elderly need improvement and not anyone here seems to mention the sadness seen in nursing facilities across the nation. As many as three to four elderly people in one room, a bed and a nightstand per client and w/o private bath.

Many elderly are merely handicapped and cannot do daily chores and qualify for skilled nursing facilities and yet, we are not providing private rooms and baths in these homes. I would like to see a massive movement in public funding away from nursing facilities and into private in-home care. Nursing homes as permanent dwellings are not the answer. If we don't do this now we will face the same futures as our parents are facing and our children will as well as caregivers. Contact NCOA immediately and tell your story. I think it is urgent.

I told my mother I would try to change things. I am following through as well as I can.

 

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Spockula answered...

Jorcna. Somehow you seem to think I'm just complaining....I'm NOT! I've gone about this in every way possible for 10 yrs. & I'm also a Mental Health Professional! The system just isn't equipped for dealing w/ Schizophrenia/emphysema, etc. if the person is living in community & has supports! There isn't much support for the family. They want the person either totally on the system, or totally off! It's bad. We've accepted all the help possible. We've finally had to separate, & now rent a duplex. Still, he's not gettin' the needed services. A sad reality. You don't know what you're talkin' about. I've taken every "angle" possible. I have done all the things you've mentioned. I've asked for help, & yes, considered all/any info. I do this for a living for Pete's sake!

 

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An anonymous caregiver answered...

God bless you and I hope you find peace. Look for a support group and counseling. That is what I am looking for. Keep the faith, you are not alone.

 

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A fellow caregiver answered...

I'm 79yrs old, crippled by osteoarthritis & severe heart problems, and I'm not ready yet for my children to have to be caregivers for me.(They live across the country) Own my own home, but it is a pigsty, since the home health aides sent by agencies/MediCare don't seem to have any appropriate skills, and I just can't afford what they cost me in losses (and few seem to have heard of the Germ Theory)This doesn't answer her Question, but just some light on the other side.

 

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Spockula answered...

79 & still independent=GREAT! Yes, sometimes, the cost of help isn't worth it. Folks don't seem to have work ethic these days, & some even criminals! My Grandmother lived to age 94 in home, w/ little support! Also, My sickly Mom is back in school at age 74, & quite active. It all depends on attitude, & how we handle what life throws at us. We all need help, eventually. Just find the type that fits w/ you & your personality. Go w/ "gut" feellings. They're usually right!

 

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shuggi answered...

My mother is 91. She is getting VERY forgetful but not "functionally" forgetful ie remembers the oven, just forgets what you said. She can drive me nuts. It is VERY VERY hard to cope with. She moved to Canada 20 years ago so all our family is in the UK and "I" am an only child - with no children - so there's no support up, down or to the side. In caring for her I've become horribly sensitive to my own "ageing" future! I WISH I HAD AN ANSWER FOR YOU. I do understand the heartache...and even more so if you don't have your own support structure. And that structure is hard to find. Surely there must be somewhere you can download. I know many, many people have a very tough time with anger. It's a scary thing. I guess all I can add is: you're not alone, even if you feel that you are.

 

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Orien2 answered...

I'm 33 taking care of my grandma and hate it I wish she would just die already. I want to live my own life and always have been independent. So that means if I ask for help things are really awful even dangerous. My suggestion is to move as far away from this whole thing as you can . Just get out of there. This will force him to hire an aid with you completely out of the picture he'll realize how much you've been shouldering, counselling helps but screaming obsenities is cheaper stay with your mad and don't let anyone tell you that you do not have a right to feel that way if they do leave them. Suppressing anger is like a soda bottle shake it enough times and if the cap's a bit loose it goes all over the place. One thing that will help is stop expecting decent behavior from them just remember they are crazy and they cannot help it. If they have dementia this is easy enough. Also if you regard it as a list of tasks or like you are taking care of a sick animal and a poorly behaved one that isn't yours so you can't have it put to sleep. Imagine them as two badly behaved dogs you are taking care of that are in considerable pain since animals cannot speak then tell yourself everthing you are hearing is not real. This exercise prevents you from taking any of it personally. Try it that could relieve some of the frustration and what you are doing now is teaching you to manage your anger more effectively. Think of it as anger management and stress management lessons. Drinking beer helps, listening to music helps as well yet watch out for any medications that present the risk of addiction. If you gotta stick with it I recommend cognitive therapy there's a book by David Burns that is really good. Try JD Robb her books are a howl and murder mysteries are best for when you are frustrated and JD Robb's Eve Dallas is hillarious Carl Hiassen is hillarious. Try the gym as well or art or poetry. You don't have to be good at any of it just enjoy whatever you do. In any case you sound worn out and probably conflicted.

 

Dale answered...

I have not been on here for awhile, but after 10 years of caregiving horror. Everybody has some crap to tell you and it never ends. I literally run a mini nursing home out of the house that would cost aleast 10,000.00 a month and people still make comments about what I should do. We had car dealers steal thousands from my parents and much worse and there is nothing that can be done. I don't have the time to tell every sick story from the last 10 years, but I will say this those of us out there need to unite and march or come up with something to get some respect. I'm ready....you find me.

 

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An anonymous caregiver answered...

Keep doing all the kind things you are doing. When they are gone you will have the comfort of knowing that you did your best. Remember, you can not make it all better. You can only slow the getting worse process and add some comfort along the way.

People, and animals, are not really themselves when they are in pain(mental or physical) or scared. It is very hard when an authority figure is mean to you, even though you know they are wrong. I've seen people lash out the worst at the people who are helping them.

Try and get some outside help. You must take care of yourself. This can be physically and mentally very stressful on you. Remember the mean things said are not true and your parents are lashing out out of fear and pain. You are doing a wonderful thing to care for them, just try to strike a balance between what you can do to help and not letting this drag you down.

 

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An anonymous caregiver answered...

Care giving is very tough however God will not put anymore on you than you can bear. Yes we all get frustrated and sometimnes want to say "why me", but the question is why not me!. Just take one day at a time. Ask God as I do on a daily basis to give me wisdom and knowledge as to how to care for my loved one and He does just that.

 

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Bobbi Henderson answered...

Orien2

It appears that you are either trying to shock us all or you have a slight problem yourself. Anyone with your attitude has no business caregiving let alone giving advice to someone else on how to handle anger. How could you wish your grandmother dead or liken sick people to animals...? Shame on you. These people deserve the same respect that we give everyone else. I would imagine if you were to call the authorities and let them know how you feel about your grandmother they would take granny off your hands. But you would probably loose your inheritance though.

There is a place for letting off steam and anger and it is certainly not around the elderly or the sick. I do wish you the best but I am saying my prayers for your grandmother!

 

Orien2 answered...

She lashed out at both me and the aid today I'm sick and tired of this she tried to intimidate me today but I refused to stand down and called my parents to report what was going on so she would not be able to put it on the aid or get the woman into trouble and this has happened before with her. She admitted everything she was trying to do and I knew all along that's why I was angry. Aside from partially losing my temper verbally and issuing some threats. Like threatening to smack her which she replied I could be arrested and I told her be my guest that at least they'd throw me in prison and I would not have to deal with her rotten behavior anymore. I dared her to do her worst and things settled down after that. Since she knew from the look in my eyes that I was serious about it. That I quite frankly just didn't care what happened. That I wasn't going to let myself be bullied or intimidated by either her or my parents anymore or anyone for that matter.

Sometimes with people who thrive when they intimidate people and people let them do it you have to take a stance like that. In a jail if the prison guards aren't at least firm it gets dangerous and people get badly hurt. Also mental health workers have to be firm with violent or angry or crazy patients.

Teachers have to stand their ground and be at least a little bit tough or those people who want to get better who are trying to reform and do it right won't have a chance. Maybe I didn't do it right but no one broke any of their bones, I stood my ground and didn't let her intimidate me mostly I was more angry than scared. That's why I say stay with the mad when you are dealing with a bully or an abuser. Maybe didn't do too smoothly maybe someone else with a little more maturity could have done a better job. Honestly with my temperment it was lucky. You are right I have issues I think we all do or we would not be here. All alittle angry all got stuff to work on. Just wanted to create an honest descussion to get the caring advisers in here as well as be honest about feelings and tell my point of view. Drag it out in the open so it doesn't cloud our judgement anymore than it has to. Repressed anger not dealt with or admitted is corrosive drag it out there and deal with it and it isn't so damaging. Maybe I asked the question in a way some people didn't like but it got people discussing it and admitting it was a problem that we needed to address. Honestly I do not care what anyone thinks as long as the right questions get asked and it did get people talking and comparing notes.

Also I'm hardly an expert and most of us are adults capable of deciding whose counsel they will listen to if they listen to anyone's. Take it or leave it this is my personal opinion and I haven't given any credentials or misrepressented myself as anything other than what I said I was which was a fed up angry caregiver that is tired of this junk. I haven't lied I don't go around lying. Appearantly someone has a problem with what I have to say I think they probably have more issues than I do. Don't honestly care what anyone does with this either. I'm past the point of caring. I have not identified myself as an expert I'm not one. If I had then I'd be subject to scrutany of this nature and it'd be absolutely justified. Since it isn't then I see no reason to listen to anyone who has a problem with my honest opinion. If anyone doesn't like that then too bad.

 

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Spockula answered...

Life can be very tough, & sad. We must savor the happy moments. We can't change people, nor health problems. Just do what ya can. Educate yourself, & take action. Health care is changing, & people are living longer. Many diseases, like cancer, can be beat. Others....some improvement, but, still a long way to go. Supportive people make a huge difference. If ya don't have that....take time for yourself! Small things can make a huge difference for both caregiver, & 'ill' person. Don't forget the Serenity Prayer!

 

Spockula answered...

Sometimes it's just very frustrating, & hard to manage the 'anger',which is really sadness. It's been 1 yr. since I had to ask my hubby to get his own place. We're now living in a duplex...neighbors! It's okay, but, I'm still dealing with watching him slowly go 'down the tubes'. I had a total 'melt-down' last week. won't get into the terrible details....but, it was a very bad, & unhealthy scene. I work on a locked crisis mental health unit, & even I felt this wasn't 'normal'. Quite scary when you're the one 'out of control' w/ rage! I've just had to, yet again, accept the fact that he's given in to his illnesses. I worry, & expect to find him dead, or worse, daily. The stress has pretty much ruined my health, & life. Very sad.

 

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Grandot answered...

There is a book called Elder Rage by Jacqueline Marcell that I found very helpful when I was caring for my late husband. You can read about it at http://www.elderrage.com/. It starts out with her pouring out her rage and I felt like I could have written that book-- it described exactly the feelings I was having. But she began to find some solutions, dealing with one problem at a time. She took a really tough stand with her father and didn't back down. It has so much practical information. It made me realize that I was not the "bad guy" and I wasn't ashamed any more of how resentful I felt. Instead I began to do two things: I did what was right and reasonable and didn't let him bully me. For each difficult situation I looked for a solution, dealing with only one problem at a time. As an example, he would refuse to use his walker or wheelchair and was always falling. One day he fell as we entered a restaurant and I took a firm stand--"From now on I won't go in with you unless you use the wheelchair." I would just sit in the car and tell him I'd go in with him when he gave in, or we'd go back home. It took a couple of times of me not giving in, but from that time on there was no hassle. He even acted much more relaxed and enjoyed getting out more. He expected me to pull him up out of a chair and to actually bathe him in the shower which I didn't have the strength to do. I found a lift cushion at Walgreens that would help raise him to a standing position from a seat anywhere. I took it with me and it helped me get him out of the wheelchair or get up from any seat. I got a shower bench and put in a removable shower head with a flexible hose so he could sit down in the shower and I would take down the flex hose and he could wash himself and rinse off. One day he insisted on eating something too high in phosphorous. I reminded him that it would cause him to itch, but he insisted on eating it anyway so I gave it to him and he got a terrible itch. It was done in a way that he knew he had caused his own problem and he couldn't blame me. That book helped me to accept the fact that some problems can't be fixed but many can either be fixed or alleviated; that I was not responsible for his moods and didn't have to give in to his demands or defend myself against his accusations or outbursts. My children helped me deal emotionally with his outbursts by telling me to pretend I'm a duck and the words were running off me like water off a duck's back; or instead of responding in anger just saying to myself "Bless Dad." I honestly did the very best I could, but did not allow myself to let him pressure me into trying to do the impossible. My situation was different than yours, but I think the general concepts in Elder Rage might help you to draw the line with your parents and to accept the fact that it's OK to set limits as to what you can do or what you are willing to do. God bless you -- and "Bless Dad and Mom too."

 

rellim answered...

Wow, lots of opinions and feelings flying around here! I have been the sole caregiver of my Dad since feb. 2008. It has not been an easy road. I wish there were more opportunities and resources out there for us. But sadly this is not happening. And what makes it sadder is the people who abuse the system. I can already visualize "IF" they come up with help for caregivers all the abuse that would take place, example,,,, caregivers applying for help, then taking the money meant to give them a break instead of hiring someone. Also caregivers or maybe I should say non caregivers asking for help when they really don't need it. I have worked in the care giving system for over 15 years. I have seen the elderly abuse the system as well as the younger generation. people will put all assets in their childrens name, then get all kinds of governement help and the children don't lift a finger except to cash in when the parents die. Some people on the program would drive themselves to town and eat out while the government was paying for someone to come in and clean their houses, fix the meals and go grocery shopping for them. when they could do it all themselves just didn't because the governement would. I am sure I am not the only one who has seen this happen, there are many other examples , but I think you see the picture I am painting. Time to go feed dad, will add more later! I can't even get a project done around here, always something to do right in the middle of it!

 

Xian answered...

To me this is a simple solution, that took me years to accept it. I needed help and I needed it badly. I finally almost broke down and cried. I thought to myself "What am I going to do?" My son told me to search the Internet for help. I said, "Yeah right! Who is going to help me?" He insisted I try it and I put Senior Caregivers in the Google search. I found a website www.callseniorcare.com and my son was totally correct - Now I have help and I can breathe a little easier. I am not going to give my son more allowance over this, but i may have time to go see him play a baseball game.

 

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Bobbi Henderson answered...

Just sharing .....Caregiving is one of the most difficult jobs in the world. It is quite scary knowing that you have taken on the responsibility for the health and well being of another human being and it is for an undetermined period of time. In other words you have no life! While this may sound cold it is really the truth and during this time it is more than likely that when you need the help that has been promised through the various websites... there will be none forth coming...because there are not enough volunteers and workers to go around. You may have to go it alone. As some other posts have stated it is very important to think of ways to enhance the life of the caregiver. The stress involved in caregiving can only be understood by those who have experienced it first hand. People can give all the advice they want but when mother refuses to do something...guess what she usually does not do it and a smart person will be taking her for ice cream, picking flowers or something else to distract her until she forgets no...and perhaps does what you want without even thinking. This is so much easier than trying to force her. The patient is most likely acting out of forgetfulness and fear. Hugs can help overcome this. Think warm and loving thoughts about them and say positive loving things to them ( even if you don't feel it) and even when they are acting up. I have found that the more relaxed we are the greater the possibilities for a more stress free life with your loved one.

The care giver deserves a life too. Personally, my feelings are that caregiving will take its toll on you and you will need to put in place a health and wellness program as well as activities where you can disconnect from the job. The mistake that most of us have made was not to get our parents to create their retirment plan, etc. I never dreamed that I would be a caregiver...but I took my mother in because she was not doing well in the nursing home and there were no other family members able to take care of her...and of course it was a great sacrafice on my part. (I am single) I am not complaining and I am grateful that we had that time together ...about 4 years. I would never have made it if I had not had a background in dealing with people, volunteer work and my life coaching experiences. I only ever felt anger toward my mother a couple of times and I removed myself from her presence for a few minutes, stepped outside, etc. This I am sure was because I knew full well that she could not help it. Even though she was acting normal...she was not...she had alzheimer's and the disease caused her to change. I had to tell myself that many, many times a day. Of course felt sorry for myself sometimes, until I counted my blessings...life, good mind, roof over my head, food to eat, car to drive, etc. I share a little about myself and my experience along with the secrets of my herb garden in My book about my experiences as a caregiver ~ "Backyard Musings of an Organic Dabbler" by Barbara G Henderson can be purchased at www.amazon.com It is a touching story of a caregiver's healing and transformation through a tiny herb garden. A light hearted easy read ..and a perfect gift for those aging parents and all potential caregivers. God Bless!

 

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Spockula answered...

Sometimes, it's just helpful to, actually, be able to put a label on the feelings/reactions! Caregiver Burnout! Wow.....Yes, that's what it is! Now, I can find ways to cope with it. Even simple things like 'venting' on here, or, reading other people's stories, & solutions.

 

Feelingdefeated answered...

I feel your frustration, my mother has Dementia and she is combative. People tell me to take one day at a time and to take breaks. To add to the problem, I have a sibling that is a heroin addict and another sibling that exploited my mother financially and dragged me through the court system. (a $35,000.00 ordeal). Now, my sibling and his girlfriend (the mastermind of the operation of exploitation) take my mother out on outings and I worry because if they are capable of stealing her money and she is worth $200,000.00 dead to them, who knows what will happen to my mother next. To top this off, my mother is vulnerable and upholds them and tells me all the time that I took her money. ( I am the Plaintiff in the court fight - do you really think I took her money) DRAMA DRAMA DRAMA. So, I feel your pain and I am a victim too. My advice: Hold onto the faith and pray. Does it get any better and when does this madness end.

 

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Spockula answered...

Holy Crap, Feelingdefeated! I'm so sorry you have to deal w/ these so-called people. Wow, just when I think I have problems....always could be worse! How can people live w/ themselves, & sleep at night. Why does your Mom think it was you? Get a good lawyer. Oh, this is so sad. I guess one must believe in Karma, at that point. They'll get their's in due time. How dare they? Yes, all one can do is pray, & try to stay away from them, & ALWAYS have someone neutral around as 'witness'.

 

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An anonymous caregiver answered...

Thannks for the support - My mother has paranoid dementia and my sibling (and the g.f) told my mother I took her money. The paper trail suggest otherwise. Yes, they are evil and mean and I do believe God will take care of it. I feel the same - how can some people sleep at night. Hopefully the court system will not let people get away with stealing or exploiting the disabled population. I have done everything to advocate for my mother, what do I need to do - scream from a mountain top?

 

bohemianroxie answered...

Well, there's no use denying that it can be a pretty difficult and thankless job. No use denying the anger that results from exhaustively dealing with unpleasant behavior..as you dress them and toilet them and basically function for them. I'm sure I'm not the only one that deals with 2 modes of behavior from the loved one..that being either demonically hateful or almost childishly and disgustingly pitiful. I say disgustingly because it just drips off the radar in over the top. No matter what you say or do. And you can never do enough. My mother is late moderate in dementia..and also dealing with extreme rheumatoid arthritis and osteoporosis. I thought I was saving her from a nursing home and an early waning away with the dementia. But it's been 6 months of non stop melodrama and no rest for the weary. She's fallen twice..fracturing her hip and having hip replacement..and now she's fallen again and fractured her pelvis. She's made of rice paper. I can't turn my head. If only there had been any special moments to make it seem worthwhile. But she leaves me ragged and weary..and usually angry and disgusted by the sight of her. Now I'm thinking regardless of how I feel ..that I am no match for her. The only way that she may even be able to survive is in an institution where she can be watched and monitored every second. And not much of a life that would be. But I'm not sure what choice I have anyway..and I'm also not sure what my true options are. I think she has just enough to be too much for Medicaid...but likely not quite enough for a decent nursing home to stay at.. I have no idea what I'm going to do. I've been struggling at my job (I'm self employed) as it is. I wish there was someone to go to that could answer all the questions. Professionals in the real world just can't be bothered..or pass the buck.

 

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Spockula answered...

Yes, it's sad, & difficult. But, it sounds unhealthy, & glad you realized it was too much for you. Some of the medicaid nursing homes aren't too bad. They also have some 'in-home' care. Just check them out, & don't leave any valuables around. There are some good folks out there....just hard to find! I feel for you.

 

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CaregiversUSA answered...

Would it help to lean on the help of an adult day care center? At the least, for your dad to give him a day away and also a day where you don't need to care for him. Caregiver burnout and stress is extremely common and sadly often unnoticed. A day or two a week at an adult day care center will give you a much needed break to do some things for yourself while your dad enjoys the company of others, hot home cooked meals and activities with friends. Adult day care facilities offer seniors one-on-one therapy, socializat¬ion, medical care and much more. More helpful informatio¬n about adult day care can be found here: http://www¬.activeday¬.com.

 

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A fellow caregiver answered...

i am with you i am lost too the more i do for my mother in law the more she wants me to do. she is living in my home but makes all my friends n family uncomfortable when they come to visit she has to be right in the midle of things. she refuses to admit she is old will not go to a senior center to engage with people her own age she calls them old folks she is 87 n acts like she is 20 but will not do anything for herself but bath clothe n feed. she walks around barking orders like she is the queen. n she has the money for outside help but will only "make" ME DO FOR HER. HER SON IS OBLIVIOUS TO HER OUTRAGES. he thinks she is 87 let her have her way. she is tearing our marriage apart its all about her we cant go out unless we take her i cant go anywhere without her. i am at a loss where to turn her other son in texas n his wife r glad she will not come stay with them. i just wish it was a half n half i need a break they dont work we do n its hard on us to continually care for her like an invalid when she can do things for herself. any help out there?

 

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Spockula answered...

Time to contact home care providers, or, 'adult day care'. You NEED time to be a couple. It's sad, & a reality...our society expects us to take care of our relatives....but, it can become unhealthy. Look in phone book, or on-line...maybe here. There ARE supports. Just sign her up! She'll enjoy it once she experiences it. Or, if you can pay 'out of pocket' for an adult/respite person to either sit in your home, or, take her out....that's really helpful. Just...check them out. Lots of criminals out there! Hide your valuables!

 

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A fellow caregiver answered...

NOT MUCH CHANCE OF HER JOINING A SENIOR GROUP.. "SHE IS NOT OLD" SHE WILL NOT BE LEFT ALONE SHE HAS TO BE EVERYWHERE WE ARE. I WISH SHE WOULD GET OUT N MAKE SOME FRIENDS I HAVE A NEIGHBOR WHO IS 90 BUT SHE CALLS HER THE OLD WOMAN SHE QUILTS AND SO DOES MY NEIGHBOR BUT SHE WILL NOT EVEN ATTEMPT TO TALK TO HER. ALSO WISH SHE WOULD MOVE AROUND A LITTLE MORE. SHE IS A HEALTHY WOMAN ONLY HAS A MILD CASE OF COPD AND DID HAVE A SPELL WITH HER HEART IT WASN'T CLASSIFIED AS AN ACCTUAL HEART ATTACK. BUT SHE ACTS SO HELPLESS IT DRIVES ME INSANE ANY IDEAS ON HOW TO GET HER MOTIVATED N TO GET A LIFE OF HER OWN? AND ANOTHER PROBLEM SHE TELLS HER SON ALL KINDS OF LIES. IF A MAN CALLS HERE FOR ME SHE DOES NOT SAY ANYTHING TO ME TILL WE ARE AT THE DINNER TABLE N THEN SHE TELLS HIM " A MAN CALLED FOR ------ TODAY". SHE LIKES CAUSING PROBLEMS. IF SHE IS NOT HAPPY WE R NOT HAPPY. ITS HER WAY R NO WAY AND I HATE IT IT IS MY HOME TOO. ANY ADVICE OUT THERE FOR A STRANDED DAUGHTER-IN-LAW?

 

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Spockula answered...

You should just go ahead & 'hire' someone, or have someone just show up, & go out for a night......she can't just be w/ you 24/7! It's going to ruin your life, & marriage! Also, they have 'adult day care' for younger disabled folks, too.

 

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takingcareofmomma answered...

I did not read all of the posts but I too felt like this. Just a constant state of anger. Someone told me that the reason parents react as you describe is because they are afraid. Afraid of losing their primary caretaker, losing their independence, etc. I don't have to go through all the fears that they must be feeling. I found this is very true. They become afraid for whatever reason and they take it out on their caretaker. Very difficult situation. So, I decided, for the last couple of weeks, when my mother gets like that, and I start getting that horrible angry feeling, I step back, take a deep breath, and give her a hug. Sometimes it works and sometimes it does not. The truth is, I just lost my dad, and felt the same rage at him at times and if I could have him back, I would do it all over again.

 

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Spockula answered...

Yes, people need to realize that it must be VERY scary for the 'ill' one. I'm sure they know they're losing control over, not only their body/mind...but, entire life! One must put themselves in their shoes! This could be us someday! Treat others as you would want them to treat you! An old, but, great saying.

 

vj3904 answered...

KJW, I hear you. Check if there are any Powerful Tools for Caregiver classes near you--I found it very helpful to address my frustrations and for additional resources. Try the Department of Aging and its city or county senior citizen services to find one near you. Hope this helps!

 

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sunnysouth answered...

I think it is worse for those who live in rural areas. I just read that the President wants to improve resources in the rural parts of the US and this needs to be done. For instance, where I live, there is no Meals on Wheels. There is a daycare but my mother refuses to go. Everyone needs respite care from time to time to keep their sanity. If your area has a PACE program, check it out. These centers are supposed to have counselors, respite care, etc. and it is based on a sliding scale payment. You really have to try and look after yourself first, otherwise you will get resentful and if you hold the anger in, you will be very depressed. I know because I have dealt with this.

 

HScook answered...

I understand so much of what is being said on this post. I moved down to live with my dad and help with my step-mom who had Alzheimers and was in a nursing home. She died three years ago. I stayed because dad is totally blind, 80% deaf, and diabetic. It tried for four years before I moved to get dad and mom to move up to where I was as it had good medical and public transit. I am legally blind and do not drive either.

So now I live four miles outside the nearest town with no transit. To do anything means first finding a driver and then paying for their time. Dad has developed dementia. At times he gets very negative and "picks" at me. He says this is how he shows he loves me. I told him that doesn't feel like love to me, but he says, "that is how I am so you just have to deal with it." Some times I get so mad I just go to my room or the computer room and stay there until I calm down. Unfortunately I have blown up at dad repeatedly.

My pastor suggested that when dad is being negative to tell him that I need to hear something positive. He also suggested that when dad is being negative about his life. saying things like, "this is a sighted hearing world and I don't want to live in it without either" that I just tell him that he has chosen to feel that way; I choose not to and not to listen or talk with him about it. I just got the advice yesterday so have not had time to try it out as my aunt came for a visit and dad is on good behavior.

One thing that has helped is that I have another aunt whose husband had alzheimers for 14 years. He had a gentle personality, which makes a big difference. But, I can talk with her and know that I am not going crazy. I also contacted a christian counselor who did not have any openings, but gave me the number of another client who was having similar issues. Having someone to talk to who is going through something similar is wonderful. She has made some very good suggestions.

As to the suggestions about support groups and getting people outside to come in and help. Being in a rural area there are no support groups, even if I could drive to them. Being on the computer for too long is exhausting. I use a screen magnifier but my eyes get exhausted and my dad fusses if I use the screen reader. And dad will not have people he doesn't know come into the house because he says they will just steal everything. Since he is totally blind and 80% deaf I can't argue with that.

I am praying for you. Sometimes it helps just to know that you are not alone in the midst of this crazy time of life. It also helps me not to look to far ahead as I get depressed thinking, "this will never end." Hang in there. If you didn't love them you wouldn't be doing this, but remember like they say on the airplanes, "If you are traveling with someone who needs help put your own oxygen mask on first, then help them." You can't give what you don't have. I have trouble with this concept, but I am learning and I believe you can too. Don't feel guilty for taking a little time each week for something that recharges your batteries!

 

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shuggi answered...

I wrote in a while ago, and before 3 months of Mum in hospital and then into a residence. I have to say despite how incredibly lucky she is, and thus myself, the every day visiting sometimes feels like an acid drip. (If no-one remembers, the ONLY family here is my Mum, and I am the only child, and without children, so the buck stops here in every sense.) Sometimes I get so mad, so overall pissed off with the world, I end up taking it out on the poor girl at the cash or anyone who doesn't do precisely what I want/expect. I feel pretty ashamed later when the fit has faded. People say "Oh, you're so wonderful!" And I'm thinking, are they nuts? I'm selfish and vile and at my age I truly truly begrudge taking care of someone else when I've so few years left myself of being physically (mentally?) able. Oh forgot to add that other half is another one I 'care for'. Life can feel like every 4 letter word there is. You cry, you feel like running away, you write long letters to yourself - and despite all the advice to take a little time for yourself...it's real HARD to do that since two people are leaning on you and there is no escape. This past week the sun came out (I mean weather wise), there was no humidity and my time out was putting flowers on the balcony. Now THAT was AMAZING. And always remember to post HERE to download. There are people who read and people who care and people who so so understand.

 

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jatmy answered...

I had posted here about my husband and dealing with his multiple long term illnesses which were getting worse. My post is 7 from the top and I am listed as anonymous-sorry about that, jatmy is my id. Since that post my husband has passedd away. As his health continued to get worse I remained his primary caregiver. As bad as things got and he became even more dependent on me, I did not verbilze to him my frustrations unless they were specific to his medical/mental state and I was afraid he was harming himself. I had to limit his driving and then not allow him to drive. Through the VA I had someone come in once a week for an hour. He did not allow her to do any personel care for him. They sat and talked for an hour until he no longer wanted her to come at all so she stopped visiting. I continued to work full time 10-12 hour shifts and came home any time he called or I called him and realized he needed me.

He was hospitalized several times with worsening complications. I took a leave from work 3 weeks before he passed away. During the last week he had fallen several times at home and I admitted him to the hospital and from there temporarily (I thought) to a partial care facility for physical therapy. This was also a week before his 63rd birthday. I had found out 2 days after admission that our daughter was going to have her first baby! His loved kids and his birthday present was going to be finding out about his grandson. He suddenly became comatose for approx. 48 hours and through testing he had had a massive stroke-his first stroke.

My daughter and her husband never got to tell dad about his grandson. We know though he is with God and is sharing in the joy of her baby who is one year old this week. I do not regret any of the time, outside activities or stress which my caring for him over the last 12 years at home had on me. Yes at the time I would have liked to have been able to do more on my own but church and work gave me the away time I needed. I think each has to deal in their own way on how to care for loved ones and no one should be critical of the choices you make. Be supportive to family and friends as you never know when you will need that support, even after your loved one has passed away.
Sorry about writing a book here and God Bless you all in your times of need. jatmy

 

Spockula answered...

Shuggi,Yes, I totally, understand. No one gets it, unless, they live it. My husband has been a total stressful worry. I'm so angry, & sad. It helps to 'vent' on here. Thanks.

 

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Natasa answered...

Yes, I can totally understand how it feels. Currently I only have my mom who I love dearly and I do not want to lose, she is the kindest, sweetest person I know. At times though I can not help feeling extremely angry and frustrated with her over things that happened in the past and then again I feel guilty because this is a pathetic reaction to life. She is in her eighties now with the usual health problems that age brings. Unfortunately I can not live with her and care for her myself, even though I would like it very much, because I live far away, I have a very demanding career and my life is complicating. I pay though for her carer and all other maintenance and medical expenses she has. Sometimes I feel resentment over this as I had to work very hard to make it where I am now and I still have to work extremely hard to maintain my position. The pressure makes me depressed and then I have negative thoughts; I try not to talk to her when I feel like this because I do not want to hurt her feelings by saying things I do not really mean and I will always regret later. Understandably she thinks that I ignore her and I do not care for her.

Does this cycle of anger, frustration and guilt make me a selfish, horrible person with no empathy for others? how can I change things?

Your comments will be greatly appreciated.

 

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Spockula answered...

Natasa, You are feeling 'normal' reactions to your situation. It's tough. It sounds like you're doing 'the right thing', though. All the feelings come w/ the territory. Try to accept things as they are, & know that you can 'sleep at night' knowing you did all you could. Maybe writing down your feelings? A journal? Or, just remind yourself in whatever way that works. Sounds, to me, like you did what worked for both of you. The most healthy environment. Sounds like you have 'a good head on your shoulders'. It's fine to not talk on phone when feeling you may say something hurtful. Just return the call in a timely manner, when you've had time to 'chill out', & take care of yourself. You are a good daughter.

 

fragilefitness answered...

the first comment I'd make is that I am saddened at some of the condemning comment directed to fellow caregivers who are hurting and living in incredibly difficult situations- don't judge, support. ok that said... our break through came when we realized our job was not to make Mom/Dad HAPPY (that wasn't ever going to happen), but to make them safe and manage their care along with our sanity. Important point: you cannot rationalize with a dementia patient- If they can't make good decisions for themselves, you must make good decisions for them. Orien2 made a very valid point- you can distance yourself by making decisions and manipulating/influencing behavior in the same manner you would if they were a toddler or beloved pet- firmly, fairly and not take it personally. You act like nursing homes are horrible, they don't have to be. it has been our salvation. My mother in law was diagnosed lewybody dementia 9 months ago, her husband left at home to manage with plain old dementia and we were managing twin crises here, actually 4 crises: my parents 2 hours away Mom with alz and dad with bladder cancer. The nursing home my mother in law is in is great! They have the skills to defuse situations & drugs to calm mom down when she gets agitated. She is on medicaid and yes we are in there daily to support the staff and insure she transitions well, but we can hold down a job, and sleep at home. My anger is then I'm last place in my husband's life and I resent that and his parents. I can't seem to pull him away to spend time with me. how I'm coping: my faith, vigorous workouts, people to talk to but hard to keep a balance and a perspective.

 

 
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