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

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

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So many things. Mom’s crazy obsessions with her phone and the need to delete everything after a call. Will delete the call, delete the deleted call, delete the contact, and then call someone else and say something is wrong that she cannot call me. The 50 calls a day while I’m at work to tell me she just woke up, she just ate, she just passed gas, she just wanted to know if I called her a few minutes ago, she is going to bed. I’ve had to set a focus on my phone from 8:30-5 for fear of losing my job I’ve been at for 23 years with only 3 years till retirement. But the biggest is the complete reliance she has on me now, the constant phony “love you” at the end of each call, with the full realization that she is only telling me that because I’m all she has now. She was a horrible mother to me growing up, an absent mother who chose her best friends over us kids, and now makes me feel guilty if I’m not there for her 100% now that she has dimentia. There is some manipulation going on in addition to the diagnosis, so hard to determine which is which. But she refuses to acknowledge she has another son who lives 15 minutes from her that can assist but won’t (I live over an hour away and had to move her and sell her home recently, pack the entire, unpack at the new place) and make the commute back and forth multiple times a week to do so. The guilt I feel for feeling this way is so very large. Recently started seeing a therapist and I can feel the help from that already, but some weeks it helps, others not at all.

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Reply to Trich01

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You shouldn't feel guilty. I'm in the process of trying to go through a whole house with 40 years of possessions. The only help is paid help, so I'm trying to get everything setup then use the paid help efficiently. I'm no spring chicken myself, and I'm caregiver for a relative by marriage. It's been challenging to see all of the social graces fade away. Frequently cussed at because they can't understand why they need caregivers, can't drive, etc. And the worse part is their blood relatives do nothing to help, say things to get them upset, and lie to hired caregivers because they can no longer take advantage of (aka steal) their finances. They are now in assisted living so once I get the house sold, I will be less stressed but facilities are no cakewalk either.

Sad to see a loved one decline, but it's even worse to do it and deal with evil family members who only care about how much they might inherit. Just know that there is a light at the end of the tunnel and it's OK for you to make decisions based on what's best for you and your loved one.

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Same!

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Reply to Trich01

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The medical system in the US is horrible to deal with. Medical offices don't answer the phone and don't return calls anymore.

I've been helping out the next door neighbor who is 77 and broke her left shoulder and right hand in March. She got a shoulder replacement in March. A couple of weeks ago she had to get her right hand rebroken as it wasn't not healing correctly. Right hand is now in a hard cast. She goes to PT twice a week for shoulder rehab for the new replacement.

She was home and starting to get severe pain in the shoulder replacement. She knew something was seriously wrong. Her PT guys dismissed her pain and said it was because her right hand was now in a cast. She knew it was more than that.

No one would call back from the shoulder surgeons office. She drove over and went to the desk and told them she needed an immediate xray. They could not do this for two days. Extreme pain for two days.
Finally she got the xray. A piece of bone broke off in the area of her humerus. A bone shard is hitting a nerve.

I'm not sure how this will end up but you have to fight for all care and there is no compassion or humanity in the US medical system.

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Reply to brandee

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Former nurses who believe they know everything and are nasty, rather than understanding, when you, the caregiver are frustrated and vent your frustrations.

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Reply to mommabeans

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mommabeans, I can relate to this. When I was the primary caregiver for my mother, I was overwhelmed, at times, and talked to a retired nurse friend of mine who I thought would be supportive. She was judgmental and invalidating of my feelings. She truly felt that I should be happy to remain in the role of careslave forever. I talk to her less often now, and tend to be more guarded when I do.

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Worst part is that I am now a bitter, resentful, screaming spouse. The difficulty of 13 years of full time caregiving for my husband has changed me. I want to be the nice, friendly person I was. Also ... I am sick of people telling me that I'm doing a good job. That does not cheer me up. I am also jealous of other people's lives. I also hate that my spouse has no idea how difficult this all is.

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Reply to ResentfulWife

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I can relate except it’s my MIL who has destroyed our retirement and peace of mind. I just want to slap people who say we’re so “lucky” his mother is still alive. Easy for them, their parents passed quickly and when they (adult children)were a decade or two younger. MIL has always been a lazy, angry spoiled brat who refuses to make a decision. When her husband passed we realized how much he was covering up for her. I hate being so angry and resentful and, like you said, jealous of others’ lives.

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The medical system— it is exactly that. A adversarial system that you can’t ever take your eye off. Doctors, hospitals, insurance all have agendas and biases. It feels like you have to learn so much just to make the right decisions for your loved one, and it’s life or death consequences.

Society, people at work and others questioning your commitment to the parents you are caring for because in their estimation you should just put them in a facility.

Friends and family who say they will help but then disappear or just appear when they please and expect you have the time and energy to give them a task to do so they can say they helped! It’s even more stressful. I have pleaded so many times that if they want to help they are welcome but to comitt to a regular schedule. Whatever frequency works for them. Once a week or month but the same schedule so I can plan and know on this day I get to have time for me. But no, it doesn’t happen! It’s always when is convenient for them and they expect me to rearrange my already hectic schedule working a full time job remotely while taking care of a parent with dementia and another severely ill. Makes me mad.

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Reply to Dwp2000

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I wish I could name 1 thing, it's more like several, but I'll be brief: having to change plans on a dime, due to my mom's Alzheimer's-induced state of mind, (or lack therof), the fiscal and physical issues: having to work less regarding the former, since Hubby and I were her caregivers, and having to follow her out the door whenever the mood struck her to go for a walk, regarding the latter. (I like walking, but not at the drop of a hat). There was also the stress of not knowing whom I was dealing with, since her lucidity could come and go, I had to remind myself that these were changes in her brain that she couldn't help.

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Reply to rlynn123

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I sometimes blurt out things to my husband that I wish I had never said because of sleep deprivation, and it seems that I can't face a particular issue again.

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Reply to careingforhubby

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I scream things all the time. I hate how the stress has changed me. My husband had a stroke 13 years ago. He has dementia now along with not being able to walk and very limited speech. He doesn't understand the world around him. He drives me crazy most days. Can you tell me your situation?

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loss of my personal freedoms

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Reply to jules925

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I feel this. It is depressing. I have no children of my own. My wife and I are approaching retirement and we want to live abroad, travel, enjoy our own senior years. If we stay for Mom, that is totes unfair to us. If we do leave, my sister will carry the burden alone. How is this fair?
Meanwhile, Mom is in IL and will not participate in any activities. All she wants is for my sister and I to be with her. I have no answers today. But I am sorry for the loss of freedom you are experiencing. The struggle is real.

(6)

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Dealing with this family that I am a part of! I have never felt such EVIL in my life! It drains you! Just want to take Dad and run away!

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Reply to Norm67

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Amen! Evil and judgement just oozes out of everyone.

(0)

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The absolute psycho hose beast I become to my husband when I walk in the door after a long day with two anxiety ridden people who turn everything into a emergency. Can't find her glasses? Call 911, start crying before we even look. Oh look right on the arm of the chair... Bowel obsessions, one hasn't gone/can't go the other can't stop going and neither of them can stop talking about it. Everything is either "terrible" or "horrible", whether it's the pizza he ordered, the roads in town, the weather... Oh let's not even start with the minute by minute weather report. Did I do this, can I do that. Why is the volume on my phone low, how did that happen.

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Reply to casole

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Thanks for the bowel obsessed memories. Stopped taking him to restaurants because he would talk loudly about his bathroom habits. I'd take care of something, and he'd ask "Are you sure? Call again." As if I had nothing better to do. Every piece of junk mail was a crisis to solve. And every single phone call from him started with the line "I've got a problem...."

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Feeling guilty for not wanting to socialize all the time or even be around my LO

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Reply to JustineRM

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I'm with you. I'll add feeling guilty because I now absolutely can't stand to hear the same stories over and over.

(10)

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How one friend (who knows how hard 10 years of caregiving was for me) told me what a ‘lovely caregiver of a daughter’ I was (her expression) for visiting my mother today on Mother’s Day. I explained to her that I am now a former primary caregiver (she didn’t reply). I actually shuddered when I read her text. I truly dislike being pigeon-holed in that way.

It is as though people simply don’t want to understand that the loss of my identity was profound.

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Reply to Danielle123

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I think the worst thing is that people don’t know how awful it can be. They stop by for their “visit” and then get on with their lives. They go on vacations and have fun and you are not. They don’t have to stop by and help so they don’t. They don’t have to live it.

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Reply to Homesick63

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1,000,000%!

(5)

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The stepkids and their kids giving me “looks” or cutting tone of voice when I have taken great care of their parent. I am leaning towards cutting them out if my life (35 years!) when spouse dies from late stage COPD.

But MY parents raised me right so I take a lot of deep breaths, get my sleep and run my couple miles everyday. But very mean of them. Hospital now and home or facility hospice soon.

I am exhausted but I know things could be worse. Thanks for this forum!

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Reply to HappyNana70

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Nana, it's probably about inheritance. If you died first, they expected to get the lot. Perhaps talk to them about it - at least to say that this behavior makes it more likely that you will indeed cut them out of your life!

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That I'm sitting here writing on a forum bc I can't sleep bc all I do is worry about what's going to happen and no matter what you plan for nothing ever seems to work out.

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Reply to casole

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I totally get it casole!!

(5)

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Not being taken seriously by my disabled partner’s medical professionals when I ask for help.

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Reply to KitKatYum

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That family will ignore somebody that obviously needs help especially in a situation taking care of another family member. Situations that can turn dangerous. That I'm not well mentally. I'm actually on disability for mental health reasons. And have not been okay way before I took over taking care of my dad. The family knows. I've been hospitalized a few times for trying to hurt myself and once was an actual suicide attempt. I finally had to call APS for help.

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Reply to Severin

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Wishing you ease, Severin.

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Mine is the feeling of loneliness, cut off from the rest of the world. This is not wed planned for our end of life journey. Friends begin to stop calling, family suddenly don’t want to get involved. I know it’s going to get worse and I can’t stand the thought of it.

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Reply to BarB1936

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Just one thing? I wouldn't know where to start.
1. Lack of personal freedom, for starters. Sometimes I feel as though I were in prison with a life sentence.
2. Lack of support. Family, friends... vanish in the air like those cheap fragrances you can buy in the supermarket.
3. Lack of acknowlegdement. Forget that. Just forget it.
4. Maybe you are a man like me and, lo and behold, you happen to have a girlfriend. Chances are she won't understand you. At all. But you will have pressure. Take my word for it.
Arguments, arguments, arguments... ad infinitum.
5. Loneliness. My mother, whom I live with, was diagnosed with Alzheimer's 13 years ago. You can explain to her your problems, just for the sake of talking to a human being, and she would start to sing. I kid you not.
6. You are invisible for administration.
7. Being a full time caregiver of a loved one with Alzheimer's is so overwhelming I've had to come to this web being a Spaniard living in Spain. At least I can vent, although not in my mother tongue.
Thanks for that possibility.

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Reply to Besiberri

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Besiberri, that is how I used to feel: as though I was in prison with a life sentence.

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That no matter what I do, or how, or when-- my husband will never "get better."

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Reply to TUXcat70

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Exactly

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When there is seemingly no end in sight and no one wants to address the elephant in the room of: 90 yo mom is content to have us do more and more including having someone with her day and night, giving up our lives so she can stay in her own home. How long can me and my sibling keep doing this? She’s certainly okay with it. She is declining but even so the more we’re there the less she will do for herself. I can’t get my brother to address what ARE we going to do in the long term. To be honest I hope she has to go back in the hospital so we can have options and be forced to make some decisions. I hate not having a game plan but no one wants to talk about long term but me. Any thoughts on how others handled something similar?

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Reply to Waghmg

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Waghmg, 94-year old mother used to insist that she would stay in her apartment until she died. It didn’t seem to trouble her that my retirement had essentially gotten derailed, and that I was being held hostage by an aging parent.

I can tell you from experience that nothing will change unless you force the issue. My mother was also declining, and it was becoming clear that she could no longer remain in the apartment. She finally began to realize herself that it was no longer working; however, we had already started the discussion about LTC.

There is nothing wrong with telling her that it is getting to be too much for you, and that you want to restore some balance in your life. You can also tell her that you can’t be there all the time and attend to your own life. It’s the truth. She probably won’t like hearing it because this is working for her: it’s not working for you, though, and it doesn’t have to continue this way.

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My husband was always quite selfish, but now that he has dementia I am just an unappreciated servant. His brothers haven't talked to him in years, our kids are loving but have their own life elsewhere, so it's just us. He has ruined my career by changing jobs and states every time he had a disagreement with a colleague, then left his job at 50 to start a disastrous business in which he squandered his 401K (in addition to playing golf almost daily, and eating out in fancy places with his friends). He stopped contributing to the household because he had to invest in the "business". I have been supporting the family, cooking every night, paying for the kids' tuition, paying off the house, and he accuses me of stealing from him because of course he doesn't remember spending his money. I had to retire to take care of him, and I fear my 401K will all go to his nursing home when I can no longer care for him at home. He is in excellent physical health otherwise, so probably will outlive me, or I will be a burden on my kids. The funny thing, his psychiatrist has reduced his antipsychotic to almost nothing because "larger doses may shorten his life." She doesn't have to deal with him.... Nobody ever asks how I am doing, it's always about him. I am tired! Groan, thanks for letting me vent.

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Reply to AnnaKat

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@AnnaKat

You were able to work, support a family, cook for them every night, and pay all the bills while your husband played golf and squandered money.

Why did you remain married to him for so long? Clearly you didn't need him for anything, so why did you remain in such a miserable situation and more importantly kept your kids in it?

My friend, please see a divorce lawyer. For your sake as well as your kids, don't be a martyr. File for divorce. You won't lose financially. Your 401K will not go towards his nursing home care bill. I don't know if you know this or not, but the rules of Medicaid are very different than the rules of what a nursing home expects. Medicaid is reasonable.

Do not remain married to him though. A divorce lawyer will make a division of marital assets. Then whatever is settled upon is settled. Then your ex-husband gets placed. Then the nursing home gets HIS assets. Not yours.

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I just finished a long trek of primary caregiving with my own Mom. A friend of mine who is dealing with her demanding and selfish 94-year old mother texted me in despair yesterday as her Mom had just fallen—again. My friend is 74, and should be enjoying her retirement in peace. She also is a senior herself, and has her own health-issues. What she dislikes the most is the seeming endlessness of it all: she just wants her own life back again. That is exactly how I felt.

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Reply to Danielle123

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My 96 y/o father with dementia annd colon cancer with no quality of life just survived his second bout of Covid earlier this month. I thought maybe this is going to be the thing that finally takes him. It wasn’t. He just keeps going. I am thankful I can write this here. It helps me get it off my chest. Of course I would never utter this to anyone directly but that is how I feel about his and my situation.

I feel for your friend.

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Being unappreciated, not only by elderly father that I take care of, but also by my siblings that don't help out and just criticize all I do and don't do. I am the one that sold my house, my husband changed jobs just to bring my father back to the family farm. I have managed his care for 12 years, 8 of it in a facility and 4 years on my own. No one understands what we gave up taking care of dad and no one has time to help out. I hire someone to take care of him when I am out of town visiting my adult children. When they do visit, they take things they want, make a list of things he wants them to have, and one sister has convinced him his attorney is a bad attorney and needs to redo his will. I have POA, but it's a constant battle. Sorry, this is so long, it could be longer.

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Reply to Annjak

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It makes you feel even more unappreciated when nobody understands (or wants to understand) what you really gave up to take care of him.

(18)

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My BOTHER ISSUE is I am considerate, caring and my spouse has cancer and emphysema. The emphysema is the life sapper.
Why am I complained, nagged at when I am a good caregiver!
Sub-BOTHER is everyone takes his side and tells me he is bored (he is mobile), Won’t let me do his BP or get on the scale (to monitor fluid retention). Even at MY recent check up (we have same young PCP) he asked me about husband! I may be very healthy for my age and caregiving but I have issues.

I accept this is my doing to myself when I should have followed up on divorce business last year. I did hiss this at him back then too.

He is more frail now. Maybe he is trying to drive me away. I will ask (LOUDLY) next time he acts up.

Thanks for this helpful issue!

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Reply to HappyNana70

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My wife and I have had to completely give up on goals we had and turn our lives upside down to care for my mom, who had her whole working life to prepare for retirement and didn’t. save. a. CENT. We wanted to have kids or adopt, but that’s completely out of the question since we have a 77-year-old 1st grader who is unlearning every day. I’m just trying to work through a lot of resentment.

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Reply to BarelySane

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I can understand your sense of resentment. You have every reason to feel the way that you do.

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Having to do everything yourself without any help because he refuses anyone but me.

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Reply to Sadandtired

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Please start your own question if you would like helpful comments.

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When people who won't lift a finger tell me I need to smile more and be positive and find a joy in the journey that I will miss being screamed at and locked out of the house.oh and it must be soooo nice to not work and do nothing all day I really hate when they act like I do nothing all day

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Reply to justsam252525

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Oh grrl. If people did that to me i would lose my mind and tell them to keep their mouth shut if they know nothing of what hell your life is like. I am kind and considerate and sometimes I let people take advantage of me but no more I have one sister that lives only one hour from where my mother and I live, but do you think she can come over here to give me a break…..no, she’s got this wrong that wrong. Everything else is wrong with her when mom and I have our own problems so yeah I would tell them off in a heartbeat. don’t care who it is, but that’s just me.

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How depleted I feel after 10 years of caregiving for my 94-year old mother. I know that I have my life back now, and need to get on with it, but am struggling to summon the energy to do that. I am taking daily steps to move forward anyway: I owe it to myself after a decade of what was essentially indentured slavery.

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Reply to Danielle123

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I wish you the best

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

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