What is the one thing that bothers you the most about caregiving?

My mom makes me miserable. She dislikes all her neighbors and calls them screwballs. I got news for her. She is the one whos screwy. Shes nasty to me 90 percent of the time. No matter what i do its not enough
Shes abusive, and doesn't deserve my help. My brother doesnt want anything to do with her. And my sister has some kind of control of her money and thats what shes interested in. I have tryed my best to make my sister understand that there is something seriously wrong with mon but she thinks because she sees her two hours a week (if that) and mom behaves normally when they're together that im wrong. Ok i feel better just letting that out

...being angry about the whole thing: poopy diapers, picky eater, missing my life, not knowing when this torture will end, feeling resentful, ...

The one thing I dread the most after care taking both of my parents is my, and my husband's old age.
As far as funds, no one should count on the government to take care of them in their old age. The only way to go is to get yourself a good financial adviser and put away enough money to prevent the cycle continuing to the next generation.

I am caring for my 93 year old mother, who is a four time cancer survivor, which the latest is ovarian cancer, and has now refused any more therapy of any kind. She still lives in her own home which happens to be across the street from me. Recently, has had falls at night so I am now staying nights with her, although I am married. She is now showing signs of short term memory loss and gets quite angry when I don't agree with her memories or have no comment as to not upset her. I try just listening and to validate what she says but she gets quite argumentative for what seems to be small things. She swore that jewelry or something has been dropped under her bed, only to find nothing there. I have three sisters who live out of town, of only one comes home on occasion for a week, since she still works. I don't mind caring for her, but it's the daily ritual of arguing that is what crushing my spirit. My world is spinning. Thanks for listening.

One way would be to appropriate funds intelligently.

According to mobile.nytimes.com;
"The report said the (Mexico) border wall could cost nearly $70 billion to build and $150 million a year to maintain.
An internal report by the Department of Homeland Security said the wall could cost about $21.6 billion, not including maintenance. Apr 18, 2017."

Too bad this money couldn't be spent on more senior services, such as affordable senior housing, more caregiving options, etc.

Since we baby boomers are growing older and retiring (by the thousands) each day, many will not have the care or services they need. That money sure would come in handy for them.

Just my 2 pesos.

Just a thought. Many of these responses refer to a lack of funds. Shouldn't we be putting pressure on our lawmakers to make funds available instead of spending over 29 million dollard on special counsels and refusing to control immigration?

I feel as if I only exist to serve my father and he's getting to a point where he is jumping too paranoid conclusions about me and I know it's only going to get worse even though 90% of the time he's good and kind. No matter how many things I do, he always has more  and everything has to be right now. I have no life and because of the financial situation, once he's gone I will be homeless possibly once again because I cannot save money in order for us to survive here in Dad's house

Feeling trapped.

No help from my brother, her other child!

When my mother went into assisted living i referred to myself as a geriatric soccer mom. No one lives forever although there are days that has one wondering. I cannot imagine anyone saying they are one hundred percent satisfied with aspects of caregiving. This site constantly teaches me a great deal. However overwhelmed you may feel there is always someone who is enduring much more than you.

Loss of my job and taking early SS because it became too expensive for homecare. She is 97, has dementia and 1 hour is the most I can be gone. I am the only one left in the family and I feel like I too am wasting away.

Lastwoman44, you Must set those boundaries or else everyone will continue to walk all over you. I would send out a well thought out Email, telling them that HOSPICE Caregiving is exhausting work, with the constant coming and going of the Nurses and Health care workers, the constant night and day care of your Mom, the cleaning and cooking of special diets, and making sure that her every need is met.

While you do appreciate that they wish to visit their Mom too, that there are certain things that need to be met, including them doing their part for Mom (and you and your family), such as preparing meals and feeding Mom, entertaining her, and giving you breaks, so that you can rest, and see to the needs of Your family.

That means that you need to schedule their visits as much as possible, so that it works for you and your family. Express that they are welcome to offer up help, in the way of shopping, cleaning, or meal prep, and that bringing snacks, beverages, casseroles and desserts are very much appreciated (feeding vistors is Expensive too!), to relieve you, so that you can concentrate other personnel and important things to do with your family, and that visits must be kept to a reasonable time frame, to allow for all of the care and medical personnel to do their job caring for Mom, and of course so that you can see to other aspects of your life, that still need to be seen to. Ask that they respect your home, your privacy, and that of the other family members who live with You, as doing Hospice care at home is extremely difficult in the best of circumstances, and you need their cooperation, as well as their help, to make this as pleasant a journey for your Mom, as she transitions to the End of her life.

There may come time where Mom is having a difficult time, or is in a rapid decline, where your life becomes seriously frantic caring for your Mom, and that you are going to have lean on people for support, and that you hope you can rely on them, to prop You up, when the going get tough! Don't forget to express your Appreciation, as you get more bee's with honey, but be firm in your requests, but do stand your ground!

Keeping a family chore chart/calender, really helps (I know, your already keeping up a Medical Chart for your Mom's needs), make this chart known and in an accessible place, so that family can see where needs aren't being (or need to be) met, or where they can fill in, so that things aren't being overlooked. 

Put things on the Chore Chart like laundry, clean kitchen and bathrooms,  set out snacks for visitors,  play music for Mom, make her meals and shakes. Offer to go to the grocery store, Tidy the house, Mom's bedroom.  Bring things to entertain Mom and others. Keep kids quiet and respectful,  make sure they are interacting with Grandma too! You need to try to get out for a few hours here and there, so have a sign up sheet, for looking after Mom, it's Important! 

Don't forget to lock up Mom's Medications!  Especially if there are teenagers and small children about! Those meds can be dangerous! Only trusted and qualified adults should have access to them! 

You almost have to make your house run like a business, in order to have order in your home, and so that you aren't being taken advantage of. Your life is important too! Ask for assistance!

My sister took care of my Mom with Cancer and on hospice in her home, and my husband and I did end of life Hospice care at home for my FIL, it's exhausting, so stand your ground, be a little selfish, assign jobs and demand respect! Its your life and your home too, but do show appreciation to those who help, as your going to need all the help you can get. I found that most people do like to help, but often aren't sure what to do, so ask them for specific things you need.

My house wasn't nearly as busy as my sister's was, as my husband was essentially on his own with me and our kids, but my sister's house was a madhouse, with us 6 kids, our spouses and 16 grandchildren all coming and going, plus her caring for her own 3 grandchildren and running their family carpet business, then add in caring for our Mom, Aarg!

Thankfully we are a very close family, and all chipped in, to make it run as smoothly as possible. In the end, we all too turns spending the night with Mom, so that she could get a good night's sleep. Our Mom was on Hospice care for 5 months, while my FIL was on Hospice care for only 9 weeks, although it was still a very trying time, both physically and emotionally.

You can also ask your Hospice Nurse to intervene with family, as I'm sure they've dealt with plenty of family situations, and have lots of idea's too!

I hope your Hospice caring situation is rewarding, and your Mom's journey is as pleasant and peaceful as possible! Take Care!

Dear Dutsi22 & lastwomen44, I hear both of you! Sometimes you have to set boundaries , if not, they walk all over you. Congrats Dusti 22 for seeing the light. I’m proud of you, it’s he health and if he doesn’t do what the doctors say, ok then, do what you want, I’m going a a trip, get your nursing ready. And by by, food is in the refrigerator, pills at your nightstand, I’m going and living, Now lastwomen44 stand your ground, if they use the house as a pit stop, tell them please clean up after yourself, do the laundry or bring your own towels, please scrub the bathroom hears the cleaner. If you have to be abrupt to get the message though to them, so be it. Advise this is tough on me, and I appreciate the company , but instead of coming and making s mess, how about bringing dinner so we can chat? Put the cell phones away let’s talk. Other wise don’t come. Tell them in not so many words, You love them , but right now this is too tough on you. That’s it. It’s called tough love. And if they kick and scream, tell them come on over while I take the day off. Yuki

I never stopped to think about how many visitors I would have in my home, after making the decision to let my mom live with me on hospice. All day long, my home is a revolving door… Hospice care workers, home health aides, family and friends. My home is no longer a refuge for me and my family. My sister comes by with her kids, they stay up to 6 hours on weekend days, lounging, the kids on their cell phones and an Xbox console...none of them making my mom a focus. I feel like I’m a constant host: “why isn’t the Icemaker working? Do you have a Phillips screwdriver?”...etc. Today, my sister said they needed to take baths at my house, because they were dirty and had something after the visit. I do not want my home to be used as a pitstop for family members. It is absolutely exhausting. If I set boundaries, family will say that I’m being too uptight about my house. I should mention that several members of my family have major entitlement issues and generally do not like when people have good boundaries because they don’t like not getting their way. But seriously, does anyone have any advice on how to address this in a friendly, lighthearted manner that is also very clear?

Hi Yuki500.. I agree with the advice that you gave Tryinghard58. As y’all know from my posts to other threads I too have “been there, done that”. My honey was not an alcoholic as we both quit drinking 27 years ago, but we are both smokers (I am trying to quit). My honey has tried every way he could to get me to leave him a cigarette… I refused. He should not be having the cravings he is having so I know it is psychological rather than physical (I have figured out I am the same way).

With my honey’s release from rehab coming up next week we had a very long, frank talk. He does not want to stick to the diet, and does not want anyone “bossing” him around. Nothing I did prior to his entry into the hospital pleased him. I told him I am going to only say this once. 1. You are a 65 year old man, not a 5 year old and therefore since you do not want anyone guiding you (or reminding you what to do) I will no longer take responsibility for your actions once you come home. I love you more than you will ever know, but if you do not want to take care of yourself by following the doctor’s directions …so be it. 2. If you do not take care of yourself and start getting the edema you will go back to the hospital…period. I will call the ambulance to take you. I am not going to kill myself taking care of you as I did before since you don't appear to care about yourself. Again you have to take responsibility for your own actions. 3. I will not tolerate the verbal abuse that you directed toward me due to fear and frustration as I did prior to now…. Period. I am not your whipping post or doormat. If it starts up again you will be finding a new place to liveas I, nor the “pups”, will live in that atmosphere again. 4. If things get heated in discussions we will stop and will each go to our “corner” as we did before last November and then will calmly talk later once things cool down (this is how we have made it 30 years besides love)

My honey did not like any of the above, but I am adamant and he agreed as he knows I will not back down. If he cannot abide by this he will not come back to my home and I will go out and get a job and be just fine. I will not bring it up again unless he goes off the deep end the way he did prior. I figured out, thanks to advice from wonderful people here and a lot of soul searching that you are right no matter how much you love them you have to live your own life. I have to move on with my life, my businesses and have to guard my health and sanity. Though my honey is very important to me, and I love him so much, I have to take precedence for if I don’t I will be no good to anyone. And if I get down, we are on the streets …period and this is not happening. I am thankful for the time that I have left with my honey as I know his heart condition will be eventually terminal, but I have myself and our pups to think of as well. So we shall see what happens when he comes home. I am hoping for the best but am prepared for the worst.

@dearfranca,

" I truly believe that my caring for them extended their lifespan, and gave them a sense of purpose being with their 4 grandchildren."

I'm sure it did. People deny or minimize other's very obvious contributions because
there is something in it for them. Money, credit, ease guilty conscious, power and
control. At the end it doesn't really matter, just know what you did gave your
parents a quality of life they would likely had an impossible time recreating on their
own

I took on the job of caring for my parents. I never ever complained about one thing. The thing that eats me alive is that my two sisters think that my 20 years of being here for "our" parents was not needed and they won't acknowledge that my parents were happy and secure having me at home with them. I truly believe that my caring for them extended their lifespan, and gave them a sense of purpose being with their 4 grandchildren.

Dear Tryinghard58. Been there done that. By all means take care of yourself! I lost myself when taking care of DH. I’m finally getting my grove back. It’s been. 1 1/2 but I’m back. You see DH had 2 back to back THR. Oh what fun. And to top it off he was an alcoholic for 40 years . So those bones are in bad shape. He never told the doctor he’s an alcoholic. Now with withdrawal from drinking, and smoking, and surgery what story’s I have. But I kept up my end of the deal, did my research, and did everything I could to make him comfortable , he refused Re-hab, so it was up to me, to bath him, ice him , med’s, and make him breakfast, lunch dinner, keep house clean, make him get up and walk, and go to work, work 56 hrs a week , and if I have time , cut the grass, trim bushes, all the stuff you can’t let go. He’s been a real bear. And won’t go back to see the surgeon , which he’s supposed too for check up’s .He’s not right in that first hip. I don’t think the bone healed properly. But I get yelled at all the time. So I took the advice from this forum, and just let it be. I can’t fix him , and I’ve stopped. It’s up to him to fix himself. I’ve moved on with my life, and taking care of me now! That’s it, if I want to go to dinner, I go. If I want to get my hair done, I go. No more sitting around the house to see if he’s ok, or wants to do something, I’m done with that. I love him, but i gotta do for me now. If that’s means taking a trip without him, oh well. My advice to you do something for yourself, no one else is going to do for you, go spoil yourself even if it’s going to the movies, or getting a message, go do it for a couple of hrs. You can hire a babysitter! Yuki

No help from family. I have my own health issues. No life of my own. Cant vent to family. They dont care. So lonely. So tired and angry taking care of mom all day. Have lost myself.

www.cnn.com/2007/HEALTH/conditions/08/13/caregiver.syndrome/index.html

I know by now the insults will come from my 82 yr old mother. If I bring her ice cream, it's the wrong kind. If I vacuum, I've missed something. And she gets louder and louder as she delivers her rant. I always keep in mind as a daughter of a narcissistic mother to a)protect myself emotionally in any way I can and b)try to learn to be more compassionate with myself because I know it is not in her, never was. It feels so awkward, maybe for all daughters of narcissists, to even use the word "self." I found as you do it more it becomes a habit. Hope this helps someone else. I had no idea until this site how many (terrific) people are in the same situation. Grateful

It's incredibly difficult. I've dealt with this type of thing as well, sometimes without
any clear motivation at all. And had others encourage my father in his complaints.
Seems to sometimes happen at my very lowest: ie when I'm ill, dog dying, etc. it's uncanny really.

I don't know what else you can do but embrace that tried and true wisdom of loving
yourself and integrating the loving, There For You, parent that you never or no longer
have. Try to think of her as a three year old in a grown up suit. No matter how normal
she seems at times, that little three year old is in there percolating away, ready to come
to life at moments notice.

Change your expectations, take the most excellent care of yourself. Best of luck with
this. It's very very difficult!!

A thanks for helping me goes a long no way. I know sometimes they can’t, but wow does it help.

This past Saturday, after making my parents breakfast and taking care of all their needs, my daughter and I decided to take the dogs for a short walk.
When we returned, I was greeted by personal insults from my mother. She said I was not loving amongst other terrible things.
I had no clue what I had done to upset her so much.
She didn't either at the time but later told me she was upset that we had not asked her to join us. She can barely walk to the bathroom let alone blocks.
Instead of thank you. I get insults towards me and my family who are the only ones around doing all of the work for them.
I realize she is sick but the insults hurt all the same.
How do you stay human and at the same time be immune to the insults?

Scary isn't it? My dad had been slated for pacemaker so they withheld food and water, for 12 hours and then surgeon got overbooked. Dad was just forgotten about. He was in ICU step down after open heart and in very fragile condition. No one bothered to inform new shift and left standing orders for surgery prep--no food or water. Crazy. If it doesn't make sense, you have to be a pest to get answers :( . Nice your mom's crappy
Dr. retired.

I know what you mean, Bettina! You know who had to force the DOCTOR to do additional testing on HIS PATIENT (my mother) when he insisted that 2 abnormal EKGs and heart enzymes in her blood were just "trauma from the fall"? Me. Oh gee - look at that - she has congestive heart failure and a-fib. Oh, and the Stage 4 kidney failure? That must have just come on overnight, right?

I fired her doctor of over 40 years. He retired shortly after that. Not saying I caused *that* result, but I can't say I shed any tears when he retired. Many other people said the same. He was one of the worst doctors in our area.

SusanA . "nurse by osmosis" . oh how I can relate! While most RN's are really on top
of things, sometimes even more so than the doctors, a few times I found some glaring
errors made between shifts. The learning curve is quite steep, and after awhile people
starting asking me for help to figure out medical stuff for their LO's, lol. In reality, I should have been the one asking for help as I was dangerously exhausted.

I hear that, Bettina.

During my time as my mom's caregiver, I had more than one nurse ask if I was also a nurse because of my knowledge of Mom's medical situation, how to perform certain "nurse" duties (checking O2 and knowing what level was acceptable, knowing when she should go to the hospital vs staying home) - I told them no, it was just from having to deal with all the medical stuff for both Mom and Dad - I had to start learning and absorbing all the knowledge. I guess I was a "nurse by osmosis".

It's heartbreaking regardless of wether your parent has dementia, is physically impaired
or has personality disorder. Or all three. It's sobering to realize that the caregivers sometimes do not outlive those they care for because of the stress. https://www.brmmlaw.com/70-of-all-caregivers-over-the-age-of-70-die-first-is-caregiver-syndrome-a-real-medical-diagnosis/

It's interesting how most of us who are caretakers have a similar experience with our person. Their child like self-centered need for all their needs to be met and the caregiver's exhausting and loss of ourselves and sometimes of those closest to us who won't go "down with the ship"
It feels like the people we love who are caught up in this terrible disease are drowning and we who love them are trying hard to pull them up but eventually, we all know we will loose the fight...and we wonder when is the right time to save ourselves while we still can. Heartbreaking.