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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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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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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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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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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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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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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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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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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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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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.

(9)

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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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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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Same!

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Reply to Trich01

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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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My husband’s daughter bought wine to go with our dinner when she visited yesterday. She knows he’s a recovering alcoholic. Has early dementia. Is taking a lot of meds too. Nor can I drink-medications. I was darn polite to her about this and firm with my husband too. She’s 23, this is the fourth time she’s pulled stupid stuff-in less than four years. How I wanted to yell at them-her for bringing the wine, him thinking it was ok. Glad I’ve started seeing a therapist. Thanks for letting me vent a little here!

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Reply to Ariadnee

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It sounds as though his daughter can’t imagine a dinner without a bottle of wine on the table. She may have alcohol issues too, or may think that is the polite way to respond to a dinner invitation. Perhaps you could ask her to decant her share into a soft drink bottle (which you can have handy), and keep it just for her. It should help her to remember next time!

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In my story I was doing something for “the good of the family”…..
I feel abandoned by a mother who has not seen my “grandmother” (her mom) in years and feels that talking on the phone is fine..(she lives in another state)
I feel neglected by my grandmother because she thinks I live for her… bookkeeper, errand runner, house maintenance, and yet work a full time job to maintain my part of the bills..
I am miserable and I want out!!
I dnt like when I speak to the ONE person who needs to step up and at this point take responsibility (sharing is out of the question now) they get emotional on me.. and become Manipulative!!!! as to redirect me from the topic…

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Reply to needmytime203

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It's ok to feel resentment & anger. I believe it is anger that opens our eyes to SEE things a little clearer.

You may not like that your Mother stepping back.

You may not like that others in the wider family stepped back.. or never stepped in.

What if I described it differently?

That those folk CHOSE to avoid stepping into harm's way? Chose to reject taking on others' responsibility. Chose self-care.

Do not wait for others in the family to save you from this situation. That's just pushing Grandma's own responsibility around again.

Push back to Grandma directly. Stand up to her. Say no whenever you need to. Firmly but politely.

One answer can be "No, I cannot help with that. I will be at work"... or I have study/exercise class/plans..

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I am just starting out (10 months) caring for my 92yo mom with dementia in my home. She acts the same way, like I am supposed to do everything for her, and do it according to her expectations. She tells me she’s sad when I am gone and I usually feel guilty. Recently she told me that her daughters SHOULD take care of her and acts like it’s a big deal when one of my brothers calls.
I’m starting to hate it and think that it will cause me to go deeper into depression.

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Reply to Doolittle1

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Doolittle 1, this will only intensify (her entitlement and your depression). If she’s already 92 with dementia, she needs to seriously look at an ALF.

Could you do some research on appropriate facilities in your area? It’s your home. Not hers. If it isn’t working for you and you already hate it, it would be best to tell her that her needs would be better served at an ALF.

It’s really hard to have any kind of private life with her under the same roof. You have every right to go out and attend to your own life. Her attempt to make you feel guilty when you are gone is manipulative and another reason why she needs to move.

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What bothers me the most about my situation as a sole caregiver is that it feels like a nightmare that I can't wake up from. I think that best sums it up! I didn't know life could be this dark until this chapter and this experience. I feel like I've lost nearly 5 years of my life now inside the haze of a bad dream. I have trouble believing that this will ever end and that I will be able to wake up and move on. I worry that this will shorten my own life and that I will become very ill shortly after (or perhaps even before) my elderly father passes away. Too many horrible things to list, and I'm sure that most caregivers on this forum will have experienced them. The little "extra" in my situation is that I'm the caregiver for my abuser. My elderly father (although now weak and frail with congestive heart failure and vascular dementia) was a very abusive person (physically and mentally). If there's anyone else out there in this situation (I'm sure there are lots), please let me know. I don't know anyone personally who has been a caregiver for a formerly abusive parent. It is definitely an extra layer on top of everything else. For me, it truly is a nightmare come true. My father was always the last person on earth I wanted to be near.

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Reply to lesanna

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Lesanna,

Many including myself cared for an abusive parent , it’s not healthy . It is a nightmare . I do believe it has shortened my life . Get out of this if possible.
If possible , your Dad should be placed in memory care using his money . No one should have to take care of their abuser .

If he has a home , sell it to pay for memory care . Or some states Medicaid will pay . If he qualifies for SNF and he has no money or runs out , Medicaid will pay.

Please call your local area Agency of Aging for a needs assessment and help in placing him . Tell them you can no longer care for him .

If he ends up in the hospital for some reason , tell the social worker that there is no one to care for him any longer . Tell them he’s unsafe alone and that you work ( even if you don’t ) . Tell them he is an “ unsafe discharge “ and needs to be placed. Use those words “ unsafe discharge “.

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I was told.. Put up with, Never hit back, Be the more mature one. If you can't say something nice, don't say anything. The message seemed to be: showing anger was 'wrong'.

As I've grown I realised how useful anger can be..

It can lead to saying STOP.
Saying No More.
Having a voice. Using it.

Being assertive is a learned skill.
I am still learning.

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Reply to Beatty

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I like this. Thank you.

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My husband is 11 years younger than me. This year I am 89 years old. The hardest thing for me is that he has no memory of our 51 years together. It hurts when he says: "where did we meet? Where did we get married?" We have traveled a lot but he remembers none of it.

We have caregivers who help with the housework because I am physically unable to do it. I am going to become bedridden soon.. When he says: "Why don't you get off your ass and do something", whatever it may be at the time, that hurts.

I am still mentally alert and take care of a all thee finances, repairs to the car and the house etc. He is physically able to be active but he can not figure out how to do the simplest things. If it is absolutely necessary to do something I give him blow by blow instructions. If I really need help he will help me. He cannot remember two things.

I know he has dementia which is following the path of his mother who lived to be ninety five. So I'm thinking the only way I'm going to have some relief is when I go. I am his POA for everything. We only have each other here, his family are all in Ontario, Canada and my son lives half the way around the country from us. We own our house here and feel safe.

So far I have a memory like an elephant and take joy in all the places I have been and all the things I have experienced but I am getting tired.

Thank you for giving a safe space to say things we can't say anywhere else.

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Reply to HazelM

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Hi Hazel. I feel so bad for your situation. Alzheimers is a soul-sucking disease, both for the person who has it and for the spouse.
Can your husband be placed in memory care? As the disease progresses, his confusion and delirium may make it impossible for you to keep him at home. Have either of you made an alternative plan? Who is alternate POA for hubby upon your death? Who is your POA?
Please have a heart to heart with family on both sides. Get plans in place.

(1)

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Seeing my parent’s cognitive abilities decline. It’s so heartbreaking for me to witness. Also, my mom’s hygiene is horrible, to say the least, and she doesn’t care how bad she looks or smells. There is nothing I can do to get her to be cleaner and I don’t know how my dad can stand sleeping with her! When you try to gently tell her about it, she looks at you as if she’s about to kill you. I wasn’t cut out for this type of life. I have no patience and my anger levels are through the roof. They refuse to live closer to us and refuse to live with us. The selfishness is unbelievable. I’ve had it with it all. Very sad, depressed and sometimes suicidal over it all. 😔

They are experiencing a few more ailments as well and it’s hard to keep up with making and taking them to doctors appointment. I am the only child that will help as my brother passed away and my sister is a jerk in another state, 7 hours away and doesn’t talk to any of us due to her being mad over how I decided to arrange my brothers’ funeral. Life is sickening and I want out of it already. 💔

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Reply to TinaMarie27

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I’m sorry you are going through this. It’s not fair to you. I would only arrange necessary doctor appointments only. Not just every 3 months to check in or whatever. These can be tele appointments too. And, get the doctor on board to help with mom’s hygiene issues. Insist he/she order some help and inform mom, don’t ask. Doctors orders. Most out patient rehab places have showers and bathroom. Mom can think she’s going there to have pt lifting weights and doing exercises. What she’s really there for is OT with instructions on taking a shower and washing hair and brushing teeth. Describe in detail and take photos since you’re stuck taking them. Ask doctor for help with ordering home health aide to get her back on track with hygiene or Occupational Therapy who also assesses activities of daily living and hygiene is one. Look to hire a really experienced caregiver once a week that will get mother in the shower and changed clothes and nails trimmed and hair washed and cut. Hair cut can go to Supercuts or caregiver does. Step back, even if that means just going every other day or skip a day. No big explanation needed. Something came up that you had to take care of. Don’t explain. Just do. Do whatever you want, watch tv all day or drive around or go have a meal out by yourself, or whatever. No explanation needed. You are a separate adult and don’t owe your parents anything. Work towards doing what you want to do for them but know your limits. It’s not selfish. It’s the only healthy way this works.

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For me it’s the anger, resentment and jealousy. It’s ruining my life. I am not suicidal but find no joy in living. So if the end is near for me then all the better. Nothing I do changes my situation. I’ve been to therapists, social workers, doctors, friends, support groups. All the tactics, strategies, and “solutions” are all good temporarily but none have helped permanently. Because sooner or later I am human and I have only so much strength to endure and hold the boundaries or reframe my thoughts or take a little break. Then. Then is when I am reminded that this nightmare will never end until I die or my mom dies. And it doesn’t matter anymore which is first. I am jealous, as others have said, of other peoples lives. I watch as they laugh and plan vacations or decorate for a party. Sometimes they go to classes or enjoy a special event so effortlessly. That is gone for me. And the worst part is I remember when I had that life. I used to be like them. It’s cruel to recall it—my old life. I am just existing now. Existing to provide the next service to a person who doesn’t even care about me.

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Reply to Momsgoto

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Reading your post made me hold back tears. I’m so sorry this is how you are feeling, it’s truly awful and unfair to be where you are. Maybe try to get outside, a bit of sunshine everyday can do wonderse for our body and mind and it’s accessible and free. Or a quick walk around the block, gets those endorphins going. Again, free and accessible. Big hugs to you:))

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My mom developed a fast deteriorating dementia in her last year. Suddenly, I was accused of stealing her money, and then her car. She clearly hated me. It was hard not to take it personally, but I learned to step back, breath and remember that she was the vulnerable one. Even though sometimes I thought she was an old battleaxe! Thoughts like that go with the caregiving territory, and you're not a bad person. Being close to someone who is losing contact with the world is maybe the hardest thing there is. I hope you have friends and family - and this forum - to talk with, share stories - and accept their help. (that's hard sometimes, too).

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Reply to KimberlyKaye

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Thank you. My experience exactly. Mum is 93 and accused me of stealing her car. She refused to make any preparations for old age, so here we are! Through inheritances, fortunately she now has finances which will provide for years of care, but she wants me to do it for free! It's been an eye opener. At 58 I am already making my own preparations! I'm grateful for what this experience has shown me. I shall not be moving in with her, and she will not be moving in with me. 80 hours in her company is my limit.

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Today it's a parent who is a caregiver to my mom who does not appreciate one iota the respite I provide him DAILY for 3 plus hours and also arranged another person (a close friend of mine) to give him an additional 4 to 5 hours a week so he can go to the gym or for a walk, anything to do with his car, any other errands he needs to run. I coordinate and go to all their appointments with them so he doesn't have to strain his back putting her walker in the car etc. I do the laundry while I'm there, I have cleaners come in once every three weeks. I field the repeated questions about his phone and every other little problem that crops up.

Yet he still yelled at me today. He called to apologize and I said "I appreciate that but in the future you are not allowed to speak to me that way". I had been planning to say exactly this tomorrow but he did call.

The thing is my mom is could be a lot worse! She showers, dresses and toilets herself. She doesn't have any cognitive problems. She has anxiety which is much more controlled now but she doesn't like to be left alone . She's on supplemental oxygen as needed and sleeping she can handle that on her own. She uses a rollator walker and gets around the apartment on her own. He cooks. He shops (she doesn't drive) He dispenses meds and formula thru her feeding tube. She can have some food so he cooks soft foods for her.

I get it's frustrating to be the 24 hour person. However he has respite!! Daily! And yet the complaints never end.

If it weren't for my mother I'd stop completely. Anyway no solutions needed it's just my vent. The fury I felt today was wild when I got home after holding myself back to not upset my others was wild....!

So glad for this thread sometimes it pops up at the perfect time.

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Reply to casole

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Casole, chances are that your father doesn’t see this as you providing respite to him. He sees you as sharing the responsibility of caring for your mother.

On the site we often find comments that children don’t have a responsibility for caring for a parent. We don’t often discuss the responsibility for parents to care for each other. It’s more like ‘if s/he can’t do it, a facility is the answer’. Perhaps this could start a discussion with him - or other posters..

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Casole, I read your posts again, with more attention to his “complaints never end”. It seems as though F resents having to provide ANY care. He may think it’s ‘women’s work’ and you should be doing the lot.

It may be time for a real talk about his expectations, your own, and also your mother’s - does she really need constant care and attention? Is there is a better way to handle this time? AL is expensive, and M clearly isn’t at the NH stage. However you can visit them in AL to whatever extent you want yourself. Your ‘life’ is also expensive – slaves cost a fortune!

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Reply to MargaretMcKen

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Casole,
Maybe stop for a while and Dad can find someone else for respite.
Any abuse should not be tolerated by caregivers!

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Reply to Evamar

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The loss of " me time" with friends, hobbies, hiking. Only way to escape to to pay caregiver. That expense adds to stress.

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Reply to Jayne44

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Casole, I read your last post and it does concern me. Your much loved mother is 79, and you say that she “could be a lot worse”. She will indeed be ‘much worse’ if she lives to 90. “She doesn't like to be left alone” so you or F are tied down very tightly. F “has always been difficult - selfish in many respects, very, very, into making sure his needs are met”, and “English is his second language”. When and where he was growing up, chances are that female relations did all the caring, and that is what he will expect as long as each of them lives. It is probably what M expects as well. You too?

You love your mother dearly. You are currently “in a calm period now”, and “hopefully that episode (F yelling) is behind us”. However you say “I will walk if it's not”.

How can you ‘walk’ in this situation? Your future looks grim unless all three of you face your expectations and change them. Think about it now, not just in 5 years’ time. You have my sympathy in a very difficult situation - unfortunately not uncommon!

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Reply to MargaretMcKen

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She will be 81 in August. I know you are well intentioned but trust me I am well aware of the potential future problems and then some and am exploring all my options while things are calm, including a short list of potential facilities etc. This is a thread about for what bothers you most about caregiving and at that moment that's what bothered me most I also said I wasn't looking for solutions.

So again, it's been a bad day all around and yah my mother is working on her anxiety issues and I'm working on ways to introduce more caregivers. What bothers me most about caregiving right now is people giving unsolicited advice and warnings. I read the horror stories on here. I know I can't be a slave. I worry about what the future holds every damn day. I see people on here daily with situations way worse and the advice is "walk" leave your mom or dad sitting in their poop and call APS... So yah telling dad "see you I'm leaving" if he does that again is totally doable. He had started an anti depressant that I think he reacted badly to, his NP took him off it and is trying something different for him.

Anyway again I know your comments are well intentioned and I'm kinda on my last nerve so don't take it personally. My husband gave me "advice" today, my mother in law asked me about who cuts my mother's toenails and does she do crosswords and what does she read it's like everyone please just mind your damn business and if I want advice I'll specifically ask for it. I'm doing my best to extricate myself from this circus and it's not easy to accomplish.

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Casole , So sorry your situation is so stressful. I hope you are able to extricate yourself from your circus.

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Reply to Hothouseflower

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My mom will be 96 in less than a week. Her emotional outbursts are becoming more frequent. I do everything for her that she needs or wants…but when others disappoint her by not visiting, etc…she lashes out at me…it is getting old and I am afraid it is going to start affecting my health. She lives less than 5 minutes from me.

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Reply to Raine58

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Can you help her to 'lash out' at the people who disappoint her? That is a lot more appropriate than for it to be directed at you. It might help a couple of things: first to put on notice the people who are 'failing' and second to the fact that you aren't the one who is 'failing'.

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

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