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 guess some things never change. 2014 an here we are with the same problems. There is no one thing. As one lady put it, it's like living in the twilight zone! So many things to deal with today, an tomorrow you might not even recognize that same persons behavior! So keep a positive attitude, an know you have done the best you can for the day, an pray, that in the future we are recognized an paid as they would pay for running a nursing home. In turn we would be able to hire some of the work done, an less stressed, an likely to survive as a caregiver without serious health issues.💝 Love to all the caregiver warriors💝

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Reply to Hope72

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The front row seat to an awful disease and the fear of living it myself after watching it - the terror my mom experiences at times is relentless and exhausting and I cannot fix it

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Reply to Scaredtaker

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I know what you mean, totally. It's hard when you can't fix it, and when even the meds aren't helping.

(2)

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What bothers me most is that I know I could do so much more if they would just let me. I have the opposite problem that many have - while some experience burnout because they don't have enough hours in the day to do what their parents want, my parents just want me to leave them alone (while they live in filth, hoarding, and with out-of-control, huge dogs that are not housebroken. The house is like a giant potpourri of trash, dog waste, and ammonia! Repeated hospital stays for falls, infections, injuries.) They know their 'legal rights' and thwart my efforts to get help at every turn.
I feel so envious of those that have a parent that actually WANTS help! (but yes of COURSE I know that's impossible too and I should be careful what I wish for!!)

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Reply to KCspoon

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Could you start with calling animal services. It sounds as though those dogs are badly neglected. How is the outside of their house? Then can you call one of those agencies that are frequently mentioned on this site regarding their unsanitary living conditions. How do they get home from hospital stays? That may be another area to seek professional help. Of course none of this will please them but they are beyond any rational thinking. Many who are burdened on this site with caregiving also have to deal with bad hygiene situations as well as demanding parents. Are there funds for them to be placed somewhere? If you have no answers for any of these questions then I think you have to give up and emancipate yourself emotionally. I realize you are an adult so that is a figure of speech. I basically had to tell my mother 6 years ago that she was a hazard to herself by continuing to live alone and if she didn't follow guidelines recommended I was walking away. I tried to make the process as fair as possible to her and was attentive to her needs. I still have to tell her I can never give her a blank check as that could easily wipe out her account. She was making all sorts of errors financially. I hope you find a solution of some sort soon difficult as it will be.

(4)

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My mother is the person I care for. She, too, had become egocentric. I find it difficult to deal with as i am the only person who cares for her and she can be SO abusive. She is 84 with dementia. I am almost ready to get her into a facility. Very challenging.

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Reply to Dexieboy

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I regularly see this Question and I would say I missed my Freedom most of all, to be able to decide what I wanted to do at any given time. Oh but to sleep deeply for ten divine hours, undisturbed. Family Members standing back while never offering to give me two or three days time out, yet pretending to be so concerned by it all as they play with their
new up to date I- phones as they drink coffee. So called Friends calling to visit in a stiff Corpsed pose while aware that Mother had alzheimers yet they imagine it to be leprocy and their first Question is WELL HOW ARE YOU KATIE ? Ah sher I am as good as I'll be now at 87 years Mom replied. Next WELL YOU ARE LOOKING ABSOLUTELY MARVELLOUS...........and more which honestly I found it to be
testing, and Mother used to feel exhausted hence I would very politely asked them to leave as Mom needed to go to bed and I would assist Mother to undress just shoes and socks and the tracksuit pants as Mom did the rest and I would have tucked my Darling Mother in and kiss Her goodnight. Then We would have recited the Holy Rosary together like We always did and more Prayers hence It was no surprise to me to find when God called Mother Home to Heaven She died with a most beautiful smile on Her face and I knew Mom died happy, pain free and peacefully. Rest in Peace dearest Friend.

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Reply to anonymous275053

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You hit on the nail... Both of my parents have passed away. Dad - just last year. And I'm still trying to get that 8 hours sleep. Unfortunately, if you've been doing caregiving hours (light sleep so that you can jump off the bed to suction mom's throat, etc...) for over 15 years .. It's so very difficult to retrain the body to sleep "normally and deeply".

(1)

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This site is a life saver - and some of the responses here have made me laugh out loud! All of this insanity we have to endure!!! I can so relate. It's amazing that the caregiver duties usually fall to just one person - even if there are numerous siblings.

I guess the one thing I miss is my FREEDOM! I want to be able to go out into the world, explore, meet interesting people, see amazing sites. Instead I work - go home - do chores - work - go home - do chores...you get the picture. I'm also terrified as to what is to come. I'm single and refuse to give up my job/home in order to take care of her. Actually she's living with me but at 92 how much longer can she stay by herself all day? I resent the fact that she leans on me so freaking much - and has all her life. Yes she is the epitome of the "Narcissistic mother".

Case in point - I wanted to retire to my room and lie down for awhile. My back was aching from all the chores I'd done that day. Wash car, scrub bathrooms, rake the yard, etc. She actually acted mad - I felt so much anger after that. And it's effecting my health. My heart rate goes up and I know it's not good for me. I try and stay patient but MY life is passing ME by. I sometimes feel by the time she passes I'll be too old and broke down to do the things I want to do...hike a mountain, go river rafting, fly to Europe, etc.

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Reply to Texasgal

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If you have the desire to do those things that is impressive. Often I find I have little desire for much. Not the best time as life here shut down due to the hurricane and I am lethargic. Am very fortunate though not to have had any weather issues and my mother surprisingly endured her evacuation with AL with grace. And I know I am in a much better place because she is in AL but I always wonder about going away partly because we have grandchildren in different states. But I understand your feelings and concerns. I am an only child and didn't have a rewarding childhood however my mother is not abusive but she has been challenging at times.

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(5)

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Narcissism must be a close cousin to dementia!

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Reply to OScarlett

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My mother has become extremely selfish and narcissistic, too. She has had a predisposition for it even when i was a child, but now with the dementia, it has gotten more pronounced in her dementia repetoire. Sigh.
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(1)

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I'm very sorry to hear that. One because it seems you may not understand she is incapable of that kind of feeling with her condition. At least not anymore. It would be good for you to find a person to person friend to talk too. I've heard of support groups. That may also be of help to you. I wish you all the best.

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Reply to DarleneLeslie

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Husband has PD with moderate dementia. It feels like the walls are closing in on me, inch by inch. Whenever I adapt to changing circumstances and accommodate to our lives together, my husband's continued decline challenges me to adapt anew. I also feel guilty that I no longer love the person he is today, whereas he was the love of my life for years. I am lonely. This all reads like several responses, but to me it feels like a description of a singular, continuous experience.

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Reply to ArtLover

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Bless your heart! You could totally be describing my life for the past 10+ years. The total, soul draining loneliness cannot be understood by anyone not living through it! The guilt for wanting to have a full, fun, active life that does not consist of constant medical appts. So tired of those who look in from the outside & tell you how lucky your loved one is to have you take care of them, while you just want to sleep, eat, read, bathe, just be able to breath-for crying out loud- uninterrupted & on your own schedule!!!
I am not ungrateful for the thousands of blessings in my life. Sometimes they are just so hard to remember among all the dreck.
God bless you! You are not alone! Reach out anytime!!! Someone on this site is always there with a hug, prayer or listening ear!!!

(7)

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angela, why are you doing the caregiving? Do you know it will get worse (unbelievable, but it will)? Is there any reason why you can't get her somewhere nice besides with you?

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Reply to mally1

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The family. Especially the husband. He continues to cry about how much he's lost. Lost what? He can still drive. She can't. He still work's, collects a paycheck. She can't work. She no longer has the day to day conversations of coworkers. No one comes to see her. The "feeling sorry for myself" family.

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Reply to DarleneLeslie

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I find it really difficult how unpredictable this disease can make them.at times she is calm andlikes her music and lets me care for her.In a split second she is ripping off her diaper and screaming maniaclly while smearing the contents all over her bed and hitting me and trying to scratch and bite when I try to clean her up. I cant predict how she will be if there are a lot of people in the mix.I just try to keep her to a strict routine and hope for good days.

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Reply to angelaK

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Angela,
Speak with her doctor or neurologist about her aggressive behavior bouts. There are medications that can help "even out" her irratic behavior.

This is also detrimental for you when she is in a fighting mood. You can be seriously injured by an out of control dementia victim. So can she while she's in fighting mode.

Please talk with her MD to see what can be done. The more stable she is, the less "burnout" you'll have. Consider this as taking care of yourself.

(6)

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The worst for me....not knowing when it will end and then knowing I will have to deal with harsh siblings when it finally does.

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Reply to Rose118

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No one LISTEN$!

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Reply to Lostinthemix

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having a fantasy of just walking out the door , no plan, no suitcase, no cell phone......my husband is 91, we have been doing this since 2005. Most of the time I feel anger or guilt. I have developed a tremor that is stress related. Time to make a gratitude list .

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Reply to Sunflower17

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Its 4am. Thank God for this site. This job never ends. No help, only advise. I want my life back. I feel like the witch on the Oz. Always unhappy. Never smile. Always tired. Just getting meaner and fatter day by day. Wheres my brother. Hes her favorite. He can have her. 2019 is my year. Me, me, me.

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Reply to tryinghard58

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I love your post. I'd like to drop my dad off at his favorite's too, they havent spoken to him in four years, have five loud chihuahuas and chain smoke lol.

(5)

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Dealing with my siblings. Their lack of understanding of how draining and frustrating it can be on me. I live with mom 87 and dad 85 who has Parkinson's. And of course when they rarely visit the parents are so sweet and nice!

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Reply to mlcjohnson

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Hi everyone. A few months back I joined this forum because I had just retired and had to look after my mom. It was very difficult because she had just started suffering from dementia. Very stressful for me. I lost weight, my hair fell off. She went to live with my sister overseas. It has gotten worse. My sister is now looking for a nursing home for her because my sister is getting sick due to the stress. Numerous incidents where the police got involved to help my sister to control her. As much as it breaks my heart not to keep her with me, we have no choice. We do not want to end up getting sick as a result of taking care of her. I appreciate all the ideas and suggestions I was able to get on this site. I will be unsubscribing from this site and thank you all for allowing me to be part of this helpful forum. And good luck to you each whatever decision you make in the future to resolve your situation. Thanks again.

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Reply to Celmira9

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The hardest thing for me, today, is the fact that my mother has always been a Princess, and now I must be the slave to the Princess with dementia. While changing her diarrhea diapers, I hear her berating my dad or me, "I won't wipe your butt".. When she yells for attention, i hear demands. She has never treated me with respect. I've always been ordered around. "Turn off that mess. Come here! Turn off that light!" Never a request. Never a "please". My dad enabled her, which was his and her bargain, but I suffer the consequences.

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Reply to anonymous247183

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I am struggling today with a migraine that won't quit after 3 days and I had my gallbladder removed exactly a month ago. I say this because on the days when I am not feeling well it is harder to cope as a caregiver. I moved my parents into my house 4 years ago. My father died this past May. I thought that it would be easier with just one parent to care for but I am finding it harder. My dad had vascular dementia but was able to care for himself with a lot of direction and supervision. My mom is going down the same path as my dad but she is more limited physically and not very mobile. At least when they were both here they could look out for each other within reason. I feel more confined with having just my mom now.

As an only child I am pretty much the sole caregiver with limited outside help. I feel pretty alone with the magnitude of the responsibility. My husband recently retired and is unhappy with our situation. We are not free to go out or away as we had hoped. I was teaching at a local university as an adjunct professor which offered me some sanity but I was not rehired this semester due to their hiring of additional full time faculty. I miss the structured time away from the house.

The thing that I struggle with the most is that my parents were good people and good parents. I feel as though I should want to take care of them but I don't. Everyone loved my parents and my friends and extended family keep telling what a good job I am doing. That adds to the pressure of me being the ever present and constant caregiver.

I don't see an end in sight. I feel guilty when I imagine how it will end because it will mean the death of my surviving parent. I find that there is often no place to be ok with my feelings.

Thanks for letting me vent. I hope others here understand.

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Reply to Rosiesmom

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Rosiesmom - I totally relate. It's a lot to take on, care for two parents (or even one) in your home. It leaves you no time to get away, no way to have a bad day. It's worse when you don't feel well yourself and you don't feel up to doing it. It makes you realize how stuck you are, and that there's nobody to fill in for you if you just can't do it.

For me there was a distinction. I wanted to take care of my mother, but I didn't want to HAVE TO take care of my mother. I wanted to do it within my own limitations and to the extent that felt right and comfortable to me. Unfortunately, most of us don't have the luxury of caregiving the way we'd like to. We do it the way we have to, based on what our parents need, not what we need. I can't imagine really wanting to do that, unless your goal is total self-sacrifice.

I hope you can feel okay expressing your feelings here.

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betinna, you put up with this behavior why? If her were my dad, he'd be somewhere else.... How do you know you'll even outlive him?

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Reply to mally1

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Excellent question, Mally. I asked myself the same thing recently and
had put some ironclad boundaries in place regarding expenses and what
I was willing to tolerate. The upshot was my hitting the brick wall of
the reality of my father's entanglement of his enablers and the degree to which they were colluding in draining me dry. Now I am dealing with their anger and him playing victim. Done at a time I was in a health crisis. I have had to make plans to pass on my duties to another and I am preparing now to implement this plan.

I was venting how clear it became that my well being was meaningless to my father. In fact, it really seems as if he has been jealous of my relative youth and health and deliberately created as much stress as possible to hobble me and force me to come live by his side. Perhaps
I'm wrong, but looking into his angry rage filled eyes when confronted with the idea of reimbursing me for my expenses incurred during his caregiving , I'm afraid it's hard to draw another conclusion. He is not short of his own funds and does not need mine.

I put up with all of his demands because he's my father despite of what happened in past, but also because of this idea that our elders deserve
respect and that we have to be careful to treat them as well as possible.
I didn't think it was possible for a feeble old man to cause me so much
heartache and harm. Narcissists are extraordinary in their capacity to cause harm, old age or not.

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At least I met many new friends on many occasions and stopped counting 10 fingers on both hands on multiple occasions and not far from my house when I call 911, neighbors. My new friends 🚔 👮 didn’t come for me; however, they realize the position I’m in. After talking to my dad they dump the hot potato 🥔 back in my hands. They say take care of your dad. Then cop says to me, I hope I don’t get call emergency 🚨 from you, him, or neighbors. Then said my dadnbelongs in nursing home or assisted living and you may try to get back to pursuing getting back to feeling normal.

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Reply to anonymous829448

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The extreme selfishness of some seniors. My dad wants to enjoy a second
childhood at my expense. He loves being cared for like a baby, and he's furious
with me that I want to preserve some of my retirement funds for my own care
I honestly think he'd like it if I died with him. The more I care for him, the more
demanding he gets. When I put some basic boundaries in place, he pouts, sulks and plays victim to all who will listen. Argggh.

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Reply to bettina

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M has dementia and has had several strokes. She is total care, which I can handle. The thing that bothers me most is she smear stool all over her bedding and side rails. Sometimes she puts her dirty hands on her face and gets it there. I don’t mind cleaning her up but it would be so much easier if we could just keep it in her diaper. Coming down first thing in morning and seeing this just sucks the life out of me. I just have a hard time dealing with this aspect of her care.

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Reply to Janeofalltrades

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God bless you Jane. Not everyone could do that. You'll get your wings in Heaven.

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Hi Sue - life must go on. I am with your husband You could be waiting years and years. I don't think it right for healthy people to be putting their lives completely on hold waiting for a senior in an NH to die. I would not want my kids to do that for me. There has to be a middle road - a compromise. Mother still recognizes us. She can't say much. Not sure she gets much out of the programs on the TV that she sits in front of. I don't see her that often as I live so far away. If your mum comes with you, you can visit as often as you do now. That makes sense to me. I have no idea about plane flights. Check with the airlines and her doctor.

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Reply to golden23

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Makes sense to me, too, Sue.... It's time for you and your hubby to have a life, I hope? This post goes after golden's... I give up; can't get the hang of this new site....

(5)

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The hardest thing for me is the expectation that's put on me as an only child to solve all of my mother's problems. She's told me I'm "all she has left" and now everyone thinks it's my responsibility to take care of her. She is narcissistic, has dementia, and she's treated me horribly my whole life. Her "friends" call and text me about her all the time and they too expect me to do something with her. I've tried. Everything I do she circumvents, sabotages, or just plain refuses. It's constant drama. :(

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Reply to NeverGoodEnuff

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That it never ends .My mother is 106 and I am 81. She was ready some time ago and so was I, but it isn't happening...

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Reply to golden23

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Hey Golden,
I'm right with you. My Mom has NO quality of life, can't remember squat and says she has a headache daily. (It's been checked out multiple times with no cause).

I'm working out the details to retire in January. Hubs and I plan on moving back to Puerto Vallarta.
I told hubs we'd need to wait until Mother "meets God" to move.
He said, " Are you kidding? She's just about 96 and still going strong. It wouldn't surprise me if she made it over 100! I'm not waiting that long. We'll just take her with us and have her live in a memory care there."

I really wanted to hear that! (Not!) 🙉

Yes, she's one tough cookie and we probably will have to bring her with us, since neither of us want to wait many years more to move.

Do you know if they allow really old people fly?(providing MD agrees)
It's a 3 hour trip.

I'm not wishing her dead but, if the Good Lord said it's her time, I couldn't complain with His timing. 😐

(16)

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@FrazzledMama "There is no such thing as "talking things out" with highly toxic and manipulative people. "

Very true! "Talking things out", is really just a sick kind of drama feed for
these types. After all, there wouldn't be anything to talk about if they
hadn't started all the unnecessary toxic drama to begin with!

Hang in there! Grey Rock method is the only way. I still fall for their hooks
though and get upset. Of course, I just end up right where they want me
:( :( .

If all these toxic drama types could just volunteer for the Mars mission.....

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Reply to bettina

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Hardest thing for me is dealing with outsiders who criticize and cause endless drama. My father is well cared for and I visit as frequently as my time/budget allows and call him daily to listen patiently about what he's eaten, his mostly petty complaints and to field his many requests.

He is narcissistic in the extreme and treats me like an unpaid caregiver. He
is the ultimate nice guy/martyr type, so when the negative gossip hits the
community, I am routinely chided and treated with cold shoulder. Essentially,
he has been seemingly interviewing for my replacement, and many are eager
to "apply" and lavish him with abundant praise, attention, and engage in
negative gossip with him. He has deliberately given everyone the impression
that he is a millionaire being taken advantage of by his greedy selfish daughter
when in reality he has attempted to have me help cover his expenses.

It's amazing how common this narcissistic parent vs caregiving adult child
plays out in similar ways. : ( . But without people piling on and giving them
ammo, it wouldn't be so painful or persistent.

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Reply to bettina

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Bettina, I completely empathize with your situation, and sorry you are dealing with all of this. I am going through the exact same thing with my mom right now. She too is in a good facility and receives good care, not to mention I have been up there 3 times this week taking her to doctors appts and bringing them her prescriptions.

She got angry a couple of days ago because I said I would be back Tuesday for her next appt. She would have me up there every day if she could. So she called my abusive sister (whom she has consistently said she is afraid of, for good reason, as my sister has been physically abusive and stolen from her in the past) and told my sister to come get her, that I never call or visit her.

Of course the facility did not allow that, but still, I am fed up with bending over backwards to help my mom only so she can call family members who are already using the court system to create drama for both me and mom, and causing more drama by telling them things that are untrue. So then of course, my sister rushed to tell her attorney, and now mom's attorney is contacting me wanting me to arrange a visit with mom and me to "talk things out" with my sister. There is no such thing as "talking things out" with highly toxic and manipulative people.

I agree, it would be a lot better for everyone without other narcissistic family members piling things on and making it about their self-interest rather than the care of the parent, especially when the parent themselves is narcissistic.

(8)

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I agree with bookluvr on PTSD. I am constantly on edge, monitoring my mom's symptoms, watching to see if she's still breathing every morning (she's 89 and has Parkinson's). I never truly relax, even when I have a half day to myself by hiring a nurse.

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Reply to kbuser

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After my mother passed my father started in almost immediately. He's about a 1,000 times more needy than my mother was. I eventually wound up in a doctor's office because I couldn't breath when I was trying to sleep. The first doctor tagged my BP at 190/100. The heart doctor ran a bunch of tests, said I was fine, well as fine as I could be under stress, and sent me on my way.

I also got lucky because I had some work changes about then, made some other changes like working out, etc. Last night I had my first hit in a year of not being able to sleep. It was exactly the same experience, anxiety, as before. I kind of know how to deal with it now but I was certain, hopeful, that I was free of it.

I never imagined I get PTSD laying in bed but I do.

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

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