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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To respond to the issue raised by justoneholly - you are right about the need for more public services and government response! The medical industry, with the assistance of the government (and I'm including Medicare here) has created a monster. It seems everyone can live to be 90 or older now, except that the body stops functioning a decade or more earlier. So care or at least daily help is needed for many who are not actually sick, just unable to manage their lives. The medical industry and the government have taken no responsibility for that consequence, though. Rather, they place more and more pressure on families, especially adult children, under the theory that we have to do it because they are our parents. One way they've rationalized this is to expand the idea of individual responsibility to include responsibility for family members, as backwards as that seems to many of us.

I don't think more help will come any time soon. At least in the US, politics seem to be driving in the opposite direction, towards more "individual" responsibility and less government "interference." Very few people with any real influence will come out and say that this just doesn't work, that it's unsustainable. That "children" in their 60's and 70's can not take care of parents in their 80's and 90's, nor should they be expected to. Because there is no plan B, and no plan to even consider a plan B. Meanwhile our parents just get older and feebler, and our last best years are spent running them around to doctors and taking care of their daily needs. It stinks, but I don't see any change on the horizon.

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Reply to CarlaCB

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"I was "suckered" by a passive-aggressive approach from the persons at the hospital. I've been "shamed" and "threatened" with neglect."

Two of the best things I've learned from this site are:
1. Set boundaries early.
2. Be prepared that the hospital may expect family to take care of the elder upon discharge.

I can see my mother telling the hospital that she would be fine upon discharge. Showtiming exhibitions galore. She would be against a rehab facility (because my father died in one). I'm sure the hospital would just assume that the Daughter Slave (me!) would take my mother home and then she would be my responsibility.

I know to say that I am not able to provide care for her, and that they would be releasing her to an unsafe environment (buzzwords to use). They can try to guilt me all they want, with my mother chiming in. Who knows, maybe she would even pull one of her yelling fits.

And that is when I would just walk away, with perhaps a suggestion that the hospital could call my brothers.

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Reply to CTTN55

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*CTT* My parent fibbed to get discharged. She said she had full-time care at her apartment. They didn't pursue details; they went with her word and she said I was there to take her home. She just wanted to leave because she didn't like being woken up or bothered to do Phys. Therapy, she didn't like the tv channels and didn't like the food. No thought beyond getting what she wanted. Dementia definitely a component of this, but never diagnosed. She does a great "showtimer" show in her occasional visit with PCM just to re-authorize meds. I was assured that home help would be sent, but it was paltry. Just a PT person once a week for a half-hour.

I was "suckered" by a passive-aggressive approach from the persons at the hospital. I've been "shamed" and "threatened" with neglect. That state has elder-responsibility laws.

If the person says they want to go, they are discharged. They have called a cab for her in the past when I couldn't be right there. I don't live in the same town. A few of the falls have been treatable enough, some for UTI or dehydration, but this occurrence I'd cited was a very bad fall. This has been going on for years. That facility had numerous records of her being there for unresolved/ongoing issues that they would not authorize the next better level of care. I mentioned this to the social worker, saying that "you know, she's just going to boomerang back here again soon." Her response, a shrug and "Maybe, maybe not."

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Reply to onlyoneholly

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" legally I do believe, if there is a family member present to discharge the elder to, they use the legal leeway to do it, regardless of what we say our responsibility/capability is. I talked to many persons at a hospital one day, begging them to keep my parent until she could at least get in a sitting position, to be able to get up, to move -- without 2 attendants helping. But, they took the papers to her behind my back and let her sign them to check out -- because I came to the hospital -- to check on progress, not to take her home."

I'm curious about this "legal leeway." If you had simply said at that point that you were not able to provide the necessary care, what would have happened? How could they then legally discharge your mother into your care?

As far as non-helping family members, I'm with you on that. Sometimes I wonder how these "wonderful mothers" that people on this site take care of could have raised siblings who want nothing to do with their mother. One sibling that way? It could happen. But just how wonderful was that mother when all sibs but one want nothing to do with her care?

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Reply to CTTN55

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Blessings to all of you devoted caregivers. Sure do understand. This is an unprecedented time in medical care and human life but it is not always about quality, it's just quantity -- more years, but they are not "healthy" years. Live longer with pain controlled, but frail and not mentally healthy.

Many in the medical field are now way younger than we are and they have not "walked the walk" of aging issues yet. As long as we can drive and be on our feet they think we are capable of doing anything required. Not so! Also, legally I do believe, if there is a family member present to discharge the elder to, they use the legal leeway to do it, regardless of what we say our responsibility/capability is. I talked to many persons at a hospital one day, begging them to keep my parent until she could at least get in a sitting position, to be able to get up, to move -- without 2 attendants helping. But, they took the papers to her behind my back and let her sign them to check out -- because I came to the hospital -- to check on progress, not to take her home. They should've sent her to a rehabilitation facility after her fall -- the physical and mental criteria all fit the blocks to check on their forms (thus getting them off the legal hook), but they didn't. I was physically there and "tag, I'm IT."

I personally think that the nation (per the census?) should provide a skilled care placement for anyone over 90 years old. The legal petitions in court should be to prove to allow the person to get to stay at home, not a battle for getting a skilled NH placement. "Certificates of Need" for nursing home beds is not being fulfilled quickly enough. There should not be a wait or a huge financial barrier to overcome. NO ONE should have to take on 24-hr care for an elder for more than a few months unless they absolutely have the physical/financial ability to do this. A nursing home placement is the humane thing to do and let the family visit and spend quality time instead of being sick and tired themselves.

The funding should be in place for this nationally. Ask your politicians to ask why there are not enough NH beds, why it is so long to get placement, and why do the medical folks get off the hook so fast when there is a family member "available" (are we really available??) to discharge the incapacitated elder to? Also, WHY can Social Services come after us just because we exist? And, for those of you who have family members who do not help, WHY do they get to defer responsibility???

I'm an "only" it's all on me. And, there is no financial reward in this, it's gone. It's a sense of responsibility to try and do the right thing that keeps me in the loop. But, I am a person too -- I have aches and pains, flooded basements, car problems, and much more to deal with. I, along with many of you cannot beg for respite and readily get it. Current laws are not in place for us. This needs to change now!

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Reply to onlyoneholly

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I can't narrow it down to one, so I will name three:
The never ending physical and emotional needs of my 95-year-old mom, seemingly without a break; the exhaustion.

The dysfunctional medical system with its constant roadblocks, mountains of paperwork and follow up phone calls to try to get normal things done.

The relatives who declare their deep love for my mom once a year on a holiday and then refuse to help in any way, or even stay in touch.

And the best thing is ANYONE who cares and acts that way competently. God bless them all.

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Reply to goodenergy

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Fighting for his needs, roadblocks everywhere,people who just don't do their jobs so you have to constantly be on top of everyone,everywhere. I twice had confidential paperwork lost by a doctors office, their answer to me its not malpractice if we found them.Nobody needs this stress on top of care giving,scratching and clawing for things to be corrected just to meet his needs.The frustration is harder than the care giving

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Reply to Tsoto1

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With all the responses that you are getting, I doubt you will read mine....but this is what this forum is for...venting and helping. I agree that the thing that bothers me the most is the ball and chain that I feel. That and dealing with the repetitiousness that I have to go through. And then, there's the narcissism and the "I" complex. You know....it's all about me! However, now that Mom is in the middle stages of her dementia, somehow or another, I seem to be able to cope with her better. She is in an assisted living facility and that is a GREAT help. But, since I am the only child living near her, I am her chief caregiver. There is NO relief. So...we surge forward doing what we do, right? In the long run, I don't think that we will regret it one bit.

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Reply to nebbish1964

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meridianav, I just experienced the same thing today! I call and tell the daughter of the person I care for my concerns, next thing I know, I'm in an intervention with her brother and wife getting told off for calling her. Caring for someone 24 hr around the clock is exhausting mentally. but when the person I care for doesn't want the RN, OT, PT, family, etc to know how badly they ARE doing, I feel cornered. anyone in their dysfunctional family I have requested very small things needed in the shower, alarms, etc... they never deliver. NO help from the family. I wish I could just leave and take care of my OWN family members. But I really like the person I'm caring for now.

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Reply to HarryH

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i am kind of mad !! my sister told me not to call my aunt when i have trouble with my mom she didnt like me calling her i needed help my mom was panicked about the rain we was getting & i tried her but her phone was off

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Reply to meridianav

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I totally relate to the issue of being treated like you're not important, that your only focus is/should be the care that is needed by the parent. I think, though, that in a lot of cases, health care personnel just have an overly idealized view of us. I think they believe that we are all motivated by dedication and devotion and that, therefore, we would be happy to do anything in our human power to potentially improve our family member's wellbeing. I think doctors and nurses would be shocked to learn that many of us are there because there are no other resources available, because your parent can't manage by themselves and there's nobody else to do it, and we have lives of our own and are dying to get back to them at the very first opportunity. That's why we're told our parent is lucky to have us - because we're so selfless, so devoted, so loving. Otherwise, why would we be there? The lack of alternatives when an elderly parent needs help is something that nobody really understands until it's right on top of them.

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Reply to CarlaCB

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"Getting treated like I am not important". struck a nerve with me too.
You get instructions about caring for your parent with no regard to your capabilities or limitations. I am a distance caregiver in my 70s, but it still applies. I am expected to drive 5 hours there, stay in a hotel and drive 5 hours back to take clothing to the cleaners. Not the issue many of you have but I found that being at a distance and at my age was not taken into account. "See if you can get your mother to take her pills." Another 5 hour drive etc for a failed mission. It was around that time that mother was well into vascular dementia along with her Borderline Personality Disorder and making many, many crazy phone calls, demands and accusations which triggered my family caused PTSD and caused problems for the staff at her ALF. Finally I called her case worker and said that whatever I tried was not working and she was causing much stress to those who dealt with her. Finally the case worker said that caregiver stress was considered a factor and she would talk to her team. The outcome was that mother was, as she should have been earlier than this, admitted to a geriatric psychiatric hospital for evaluation and treatment. After she had been there a few months they told me she was very lucky to have me. I hate that statement - again it focuses one way only.

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Reply to golden23

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johnk6749 - "Getting treated like I am not important. Doctors and nurses only consider my utility value in serving my mother.

I think their Hippocratic Oath only extends as far as "do no harm" to their patient and doesn't include the caregiver. Because surely the doctors must know what many caregivers have to put up with.

When my mother's doctor told me that my mother needs "social support," I just looked at her. She said my mother needs "someone to check in with her daily to see what she needs." I said nothing. I will not contact my mother daily to see what list of slave demands she can come up with each day. My mother thinks all of her "wants" are "needs."

When I took my mother to the ER last spring, it was crowded. The staff told me to get a urine sample from my mother. The waiting room bathroom had flooded sewage in it. When I complained, I was told to take my mother to the the treatment room area.

What would have happened if I wasn't there?

We waited and waited to be seen in that ER. Of course my mother had to go the bathroom several more times. The waiting room bathroom still wasn't cleaned. ("Oh, it hasn't been cleaned?" the ER reception desk attendant said? As if she didn't believe me?)

When my mother was finally brought to a treatment room, she had to go to the bathroom again. Since by that time it was after midnight, I put my swollen foot (broken toe) up on a chair and told my mother that no, I wasn't going to go to the bathroom with her. I'm sure the staff wanted to me to take care of all that for them. I didn't. It was up to them.

I remember a man on this forum writing how he felt uncomfortable always having to help his mother undress in the waiting room of doctor's offices. It was assumed that he would do it.

So yes, the medical professionals often only look at us as servants to our parents.

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Reply to CTTN55

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I answered this a while back. But sometimes "one thing" is more than one thing(!), so here goes:

My day job (my paid career) is a fast-paced client-service role. Always "on." Always thinking 3 steps ahead. Always making things happen for other people.

Before caregiving, my free time was the opposite of that. (I made sure of it!). During caregiving, there were no days off from being the do-er, the fall guy and the rainmaker. And a crappy commute, whether I was working for "the man" or tending to mom.

Even when I wasn't physically with mom, my mind was on the job. Constant research. Working up solutions (and scripts) for the next bomb. And repeatedly explaining to the well-meaning(?) askers why I could only do so much for someone who refused to make me her FPOA and HCPOA.....yet only "trusted" me.

And looking like a turd because I didn't know what was physically wrong with mom and I couldn't define mom's cognitive defects. Because mom refused to see a doctor.

Most of the "Greek chorus" threw this back on me. As mom's only child, I heard endless iterations of "you just need to find the right words" or "you need to appeal to her sense of XXXXX" or "you need to force her."

Sigh. If they only knew. It wasn't worth trying to explain.

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Reply to BlackHole

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The feeling that I will never live a normal life again. My life ended 20 years ago. Getting treated like I am not important. Doctors and nurses only consider my utility value in serving my mother.

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Reply to johnk6749

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igozoom i think we should ask them to pay us to watch them your family members ..i get hardly no help my mom has dementia & 81 .she is pretty hard to deal with !!!!!!!! i wish i can just walk away & pack up & move & let someone else take over !!!!! i got to wait on my mom hand & foot too when she can so stuff ..i hate it but it kinda stop she would complain that i was gone to long ,h*ll 1 time she threaten to throw me out of the house !!!!!! if i did she would not have anyone to help her !!!

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Reply to meridianav

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There is nothing easy about any of this. I don't know what's the worst part, to see mom suffering and in pain (the office manager cut back her pain medication; apparently someone who knows as much about medicine as the cable guy makes these decisions) and her depression, the constant exhaustion and frustration, my guilt over feeling resentful, helping her go potty, getting woken up when I'm finally asleep, the endless chores and never a day off.

I really think that only other caregivers understand what we go through.
So grateful to all of you for being here.

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Reply to Dana235

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Thank you for your reply. ,it just kills me to see mom like this ..everyday my pain for her goes deeper ,,,I see her lose weight , and decline oh I miss my mom she was so wonderful..you think I was a teenager but I'm a 55 year old bawling baby ..I needed your kind words thank you

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Reply to ohmeowzer

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Dear ohmewozer,

I'm so sorry. I know its very painful to see our parents as a shadow of their former selves. After my dad's stroke, I really struggled with his daily care but I thought I was doing right by him. But since his passing I see how unhappy he was. There was no more joy and it was so hard to accept this. Thinking of you. Sending you love and hugs.

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Reply to cdnreader

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Seeing the steady decline of my mother and she not even remembering the lady she use to be ...the strong woman who,was a director of nursing the lady who,never swore .....the lady I,thought would never turn out to have dementia and not even know what comes out of her mouth ,,,the mom I worry about all the time ,,the mom I handle alone , work full time as a nurse and the only child that sees her , my sister died almost 4 years ago suddenly and my brother lives in another state so it's all me ....I misss my mom , my good wonderful mom who always put us first ..I hate to see her suffer and decline ,,it killls me ,,,,where is the merciful God ?

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Reply to ohmeowzer

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Roger, you are exactly right. Which is why this forum can help as a kind of support system. In NYC there is something called CaringKind to help people with dementia and their caregivers. I found great empathy there while caring for my sister, even though everyone around me thought I was exaggerating the situation.

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Reply to Peace516

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For me, im sick of people who compare their problems as being worse, compared to being a caregiver. I'm not trying to undermine their problems but in my opinion, there is now way of anyone understanding what it's like to be a caregiver unless you are one and for someone to ignore the stress a caregiver is under while trying to say there stress is worse really gets me.

I figure everybody has problems but nobody's problem is less important and I'm really getting sick and tired if people who think otherwise. I don't understand why people have practically have to have a debate on why their stress or problems are more important than someone else's.

In my opinion, it's a lack of empathy for each other.

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Reply to SingleOkie

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my mom has dementia!!!!1 seems like there really is no help for me but her psychiatrist kinda sometime i wish i could put her in a prison cell when i tell her to stop drinking Dr.pepper she will drink it all day if she does she goes crazy .so today i bring a 1/2 cup of water & tell her to drink it she does she tells me i want to go home & she sometimes tell me i want to go get out .so just this week she did so i took a long walk ,then she cooled down & went to bed before i came home i stayed out in the car for a hour .if i got paid everytime she wants to throw me out id be pretty rich .

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Reply to meridianav

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It's difficult for me that I am one of six kids yet I am the only one caring for my mom and making sure that she has care each and every day and night. I am the only girl but I have five brothers one who is deceased yet the other four do nothing to assist. They would rather see my mother in a nursing home or Assisted Living then at her own home or she prefers to be. I have helped financially physically and mentally for almost 6 years now since her stroke. It's been at the cost of my own marriage comma although my husband agreed to assist my mother until she passed and she's been a widow for over 30 years yet decided that he didn't want to do it after all. So here I am helping a sibling who is mentally disabled my mother who is 83 and a half and requires 24 hour care with twin 10 year old girls. I love my mother deeply she has always been my best friend and I would never leave this job to anyone else but myself because I care about her more than anyone could ever but once in awhile I feel like I deserve a break or at least a some recognition for the sacrifices I make every day for everyone else. I have never been a selfish person but now that I am older and see how selfish my brother it's really are that really does hurt it's painful. Anyone else in the same situation?

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Reply to ccsupermom

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I have a long list, but I think what bothers me the most is that my life has been hijacked. I have kids at home, the youngest is two. Because my mother can't be left alone we either do nothing as a family, have to scramble to find respite care (when we can afford it), or take her with us. When we take her she makes herself and us miserable. For example, we took her to an Easter egg hunt, our son's first. She fretted about all the children getting too cold, getting sick from being outside and "underdressed" (EVERYBODY'S kids...ALL the kids), choking, and falling in holes. When we were all talking and laughing, she jumped off and took off. That put an end to the "togetherness" as one adult was wrangling her, and one was wrangling kids. This was after I had been assured that one sibling could watch her at our house, then couldn't, and another sibling said he had a cold and couldn't help. My mother VERY often thinks my son is hers. She thinks he is my brother, who was sickly as a child, so when we bathe him she's rattling the door handle and yelling or even hitting it with her shoulder. When we take him outside, she becomes agitated and angry. When we tell him "no" and he cries she starts yelling, trying to take him away from us, accusing us of beating him. We are behind in taking his pacifier away and moving him to his own bedroom because she becomes so agitated at his smallest peep-even if he's "having too much fun," as well as because I'd be worried to death wondering what she might do at night with him in his own room. These are normal child-rearing activities that we are having a hard time doing. I know she can't help it, but it is difficult to deal with.

I am the youngest of five siblings. The sibling closest to me in age is 17 years older...they've all raised their children, and my kids' childhoods have been taken over by their ill grandmother.

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Reply to Joy135

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Vwagain, my situation is so similar except I moved home 7 months ago to help my dad. My mom has frontal lobe dementia. He jumps and is at her beck and call. He has created a monster. She has no rules or boundaries and because she knows my dad would never tell her no she is completely out of control. So, I had to become the bad guy, took the car away, made the home dementia proof and made her to go to the doctor and after many lost battles finally get her to shower. Our relationship was always stressed but even more so now. My dad still worships the ground she walks on as he is killing himself to care for her. It breaks my heart everyday and there is nothing I can do to fix it.

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Reply to Elizabeth48

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I have been taking care of my husband for 10 years. He have 4 grown children from a previous marriage, we have 1. They have never bothered to take him for, not even a few hours at a time to give me a break. If they wanted to help they should not have to be asked. I have not had a break since I stopped working 2 years ago. He also have siblings, they don't help either. But always want us to come to their house for different functions. The two daughters were trying to tell me what to do. After they realized they could not dictate to me they no longer call or even come by any more, Glad about that.

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Reply to drspock74

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What bothers me mabe not THE worst but it's up there is tht my mil thinks I'm going to take care of her when she's old(I take care of HER mother and she doesn't help AT ALL!!! her poor mom isn't even allowed to take her beloved doggies to her house so she won't go) I am starting to think I have a stamp on my forhead that says dummy tht only selfish a**holes can see. Smh

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Reply to INEEDALIFE80

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This question (and the responses) is making my head explode.
Thinking on it makes my heart hurt as well.
I will have to return later.
But I thank you for asking it.

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Reply to Mojorox

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Thanks for the reply CarlaCB, I spoke to the occupational health nurse today and she is coming round to do another assessment which will be followed up with an appointment with the geriatric consultant, so hopefully they can assess any deterioration since her last appointment six months ago.
She is living independently. At the moment the auditory problems are mainly repetitive music but also some words and phrases being repeated, like her house number - thankfully nothing sinister.

CTTN55 - she can afford to pay for help if she needs it and that's something I'll need to look into. Her bathroom is right next to the front door so I admit I clean because I'm embarrassed if anyone comes to the door and also I need to clean it if I have to use it - although I avoid that as much as possible.

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Reply to AngelaBr

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

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