Feeling guilty of sometimes being a perfectionist caregiver. Is this common?

I'm not sure you're being a "perfectionist" but just a son(I'm only assuming son, by your username Tony. Sorry if I'm wrong) who wants what's best for his parents. There is nothing wrong with that, and certainly nothing to feel guilty about. Guilt, like is often said on here, is for those who have done something wrong. Being firm, or even raising your voice isn't doing anything wrong. Sometimes folks with dementia require firm instructions or directions. You have to remember that you are doing the very best you can. And that's all any of us can do. So don't beat yourself up over this. Just keep doing your best. God bless you.

You have nothing to feel guilty about. You are concerned about your mom and want to give her the best of care. I am picky about my mom. too I know I do the very best for her and I feel good about that. Don't second guess yourself, I would be concerned more if she was not cleaned and sitting in wet pants all day. Good job. Your mom is fortunate.

I don't think it's perfectionistic, but I think you will have struggles with loss of control as your mom loses more and more ability to respond to your requests. I've had to start to come to grips with this myself, as I help my 91-yr old mom living next door to me. She's still in very good condition mentally and physically but she makes far more "mistakes" while helping me and I just am learning to be choosier about what tasks I have her do and have a plan if things don't go according to expectations. I have run a business with my husband for almost 40 years so I have a high need for accuracy and consistency. I'm so sorry your mom has decline so early in life...74 is pretty young for dementia...do you mean ALZ? I wish you all the best and peace in your heart when things are messy.

My mother didn't go diapers become of complete incontinency, but she went into diapers out of necessity. She's in a memory care facility, but there's no way they can pick up on signals that she may need to go to the bathroom, so they take her every two hours, have her sit on the toilet, and change the diaper whether it's needed or not. That keeps her from getting messed up, and it also kept her on a schedule to continue having some control of her bladder and bowels. You may have to resort to this, too.

What happens to her on the days you aren't there?

So it sounds like you are there kind of half the week?

How is Dad coping the rest of the time? Are there other caregivers involved? Siblings? Paid Aides?

As a self-proclaimed perfectionist the red flags for me are that you will try to be The Lone Caregiver.

I wouldn't be concerned about a slightly raised voice once or a non-complient elder. You are providing hands-on care, some folks do, some folks don't. No judgement. No guilt.

But if you have not got to the care resistant stage, well hold on to your hat... there's a wild ride ahead cowboy!

However you characterize “pretty advanced dementia”, you’re talking about an inevitable loss of ability to comprehend, use, and integrate language cues.

In your description of dealing with your mom and her issues, it sounds as though you may be trying to use a skill she no longer has, and as a perfectionist, that can wind up being more frustrating for you, and useless for her.

In the situation with the slippers, you might find it easier on you both by performing the action sooner and more often, and not get overly involved with talking about it at all. You DO notice from what you’ve posted, that her communication is becoming less and less usable in managing her care.

Are you and your father able to consider and discuss what you foresee as her future? I think your attempts to engage him in her care are poignant for you both, but I’m not sure they’re fair to either of you. Sometimes denial can be temporarily affirming, but becoming too entrenched in denial can also delay needed intervention.

Finally, guilt. REALLY? In all of the complicated depressing, unpleasant, emotionally charged reactions to unexpectedly difficult life circumstances, the LEAST PRODUCTIVE of all of them is GUILT. You are acting in the most loving and compassionate way you’ve been able to come up with.

Be open to alternative solutions as her condition progresses, implement and be flexible to multiple ideas, and most important FORGET GUILT.

Tony11, I'm hoping you can answer the question of whether your mom has an actual medical diagnosis of dementia, ALZ or short-term memory loss by a doctor? The reason I'm asking is that there are non-neurological illnesses that can mimic cognitive problems, like an untreated UTI, thyoid issues or overmedication (and those are all treatable). Just would be helpful to know if these have all been discounted as causes for your mom's decline, being that she is only 74... thx

After reading your response to MJ1929, where you said that if you're not there, your mom doesn't get cleaned up because she won't let her husband(your dad) do it, is concerning to me, as anyone sitting in pee or poop filled diapers or underwear is so susceptible to their skin breaking down and sores developing, that can be very hard to treat. Since you are not there 7 days a week, perhaps it's time to be looking for the appropriate facility for mom to be placed in, where she will receive 24/7 care and where she will get changed and cleaned up every 2 hours or so. At this point you must do what is best for your mom, and as hard as it might be to hear, placing her in a facility sounds like it's probably best for all involved. Wishing you the best.

Hi Tony,
You're taking care of your mom as best you can. Times have changed from when it was more common for aged parents to be cared for in-house by their grown children, and it leads to some complex schedule juggling. I understand your frustration with the repetitive behaviors of your mom. Sounds like no harm done other than you didn't meet your own high expectations for yourself. Clearly you understand that her behaviors are not her fault.
Can your family get together and discuss what's the best way for your mother to be kept clean every day? Her needs have increased and the current model leaves gaps. (Perhaps also talk with an eldercare attorney, or at least line up POA and a living will/advanced directives for both parents. ) If that means a caregiver is brought in once or twice daily to ensure that mom and house are clean, and keep her skin intact (assuming you or family can do a once a week showers) then so be it. Your brother's are letting their wives do the caregiving, and they are drawing the line. I don't blame them. Your dad is probably carrying a significant work load. If your dad is resistant to a caregiver visiting then an alternative is moving one or both of them to a nearby facility where your mom's needs can be met. Does he honestly think that if his wife was unaffected she would be ok sitting around in her own feces/urine daily? Mom should also be checked for a UTI as she may be susceptible, given the hygiene, and her PCP should be made aware of the current situation and give her a referral for further assessment by a specialist, either Neurology or Geripsych to get a firm diagnosis on record and help guide her care. If the current PCP is unwilling to do so then change PCP's.

You were giving directions in a manner that she would follow. That doesn't seem like a perfectionist. Do not feel guilty.

I am concerned that your mother is incontinent and probably needs more help with toileting. Are other people coming into their home to help on your "days off"? If not, it seems time to get help - at least while they are awake. Consider asking family, female friends, female members of their local church, and/or home health aides to fill in on the days you are not there. Otherwise, it might be time to consider a memory care unit placement.

i do the same thing. I loose my patience and than I feel guilty. Now I am starting to tell myself they won’t remember. Still not a reason to loose my patience. Are you the only one that takes care of your parents?

I felt anxious just hearing your story. It sounds so stressful. Sounds like they need in-home caregivers. If they have no money to pay for it, talk to an elder lawyer and see if they qualify for Medicaid to pay for in/home care. Money can be put into a trust to protect it... you need an elder lawyer.

We are who we are. I suffer a bit with "perfectionism" and I call it being a "control freak". A bit OCDC. The kind who will sit and see a crooked picture and have it be a bother to my mind. So I sympathize. You recognize where your mind is. We can all continue to work on this sort of thing, and we have the ability to apologize. We can say "Sorry I came across as a drill Sargent; I will try to be better". You are now requiring YOURSELF to be perfect; knowing that is the secret to being a bit forgiving of where anxiety and lack of control takes us. I am wishing you good luck. There is an ad out there about adopting and fostering that always tells you that you don't have to be perfect. You just have to be loving. You have already written us about what bothers you are your own shortcomings; I think no one can accuse you of not being loving. That is what is most important.
Do also pay attention to signals that tell you "I may not be able to do all of this forever".

Greetings Tony11, I too am a caregiver for my parent. When I came across your post, I could surely relate to the perfection part. You are so wonderful for caring for your parents in such good manner. I strive for perfection in my everyday life and sometimes you're right, it cannot always be a good thing. I offer you however to think in terms of "Simply staying ahead of your task!" I'm sure your parents appreciate you so much! Have a good one...

I think you need daily help for the toileting issues.

If I were 'told' or even 'nicely asked' to wipe my MIL's bottom after changing her diapers, that would be a hard 'no'. Like, not even negotiable.

You're doing a good job and talking firmly to mom is OK. Sometimes it takes that to get through to what you need to say.

BUT--you can't expect anyone else to have your same standards as per mom's care. Unless you've hired them and that is in the 'rules' as it were.

Feces on the skin for even an hour can cause serious skin breakdown. I have a lot of grandkids and I know that you have to get a messy diaper off them pretty fast. 'Diaper rash' in the elderly is miserable and can cause a lot of long term problems.

You could certainly have a family meeting about how to best care for mom, going forward, but do not put on the sis-in-laws any expectations. This is NOT their mother. Some may feel fine jumping in and helping. Some may simply say 'no'. My DH has opted out of any care for my mother, he hasn't even SEEN her in over a year, and I doubt he'll see her before she dies. I do not do a single thing for my MIL--we clash personality wise and she doesn't want me near her.

I worked elder care and had NO PROBLEMS cleaning up my CLIENTS, but something about it being family--instead of easier, it was harder.

It's pretty much a given (I think) that 'perfectionism' is not a positive trait, and usually harmful. 'Perfect' is subjective. 'Perfect' only has objective meaning perhaps in some sports where an activity can be measured ('a perfect 10', etc.)--which even in that example, is subject to each judge's own perception! There is no 'perfect' behavior, 'perfect' emotions, 'perfect' attitude. For me, I learned that what killed my spirit from an early age (I'm 66 now), was my parents' own, misunderstood, subjective idea of what their own idea of 'perfect' was--which, in turn, they learned from their parents, going back infinitum. When my mom was being raised, 'perfect' was the belief that children should be seen (perfectly and absurdly dressed) and not heard. Also, 'perfect' was basically being a divine spirit--no 'bad' thoughts, feelings, words, behaviors, being 100% clean and tidy, 24 hours a day, every day, etc., etc. Mainly, 'perfect' was never, EVER 'cause' either parent any remote sense of discomfort, discontent, frustration, so on.

And, finally, as I learned and believe 100%: guilt is a useless emotion. More productive, for me, is my own internal sense of discomfort or regret following some words or behaviors I've uttered or engaged in. 'Regret' is a good thing for me, as it allows me to be aware of when I've strayed from my basic personal 'north star', and lets me try to 'set things right' as soon as possible, to 'make amends' --either in words &/or actions.

With my mom, I can't even remember the hundred times or more I expressed frustration, directly or indirectly. Now I try to think of her as if she were my own 3-year old--and there's not a parent 'out there' that hasn't experienced frustration. Please, stop beating yourself up!!!!!!!!!

Tony, you are amazing and a wonderful son. I am sorry for the rapid decline of your Mom. It is easy for others to tell you not to feel guilty, it is very normal to feel caregivers guilt. I had it immediately and it will burn you out. I spoke to many professionals, it helped. It is normal to get impatient too, even angry inside. I would just go in another room for a few minutes where I could still see her, as she was a fall risk. When I came back it was like it never happened. You are really taking care of two people, so it is double guilt for you. It must be exhausting for you to go there so often, I know it was for me. I pray that you get some help to care for them. Some have given excellent advice here, I wish I had found this forum while I was a caretaker.

In a word, NO. But take it from someone who has learned the hard way. STOP. IT will kill us! It nearly did me. I am learning now, the hard way and quickly. Simple meals are adequate. One side dish is enough if any. ANd yes, potato chips are a side!
The mess in the bathroom would have still been there if you did it later.
Your mother's urine soaked slippers would have tracked the stench through the house leaving a dirty path for you to tend to later. One time my mother had a rare accident with poop and was totally uncooperative not only with me (to be expected) but also refused to take directions from her beloved hubby. I was at a loss and contemplating 911 as I didn't know what else I could do. In the end I literally cut her nightgown off of her to get rid of the stench. High blood pressure is truly a silent killer which no doubt contributed to my dissected aorta. PLEASE don't let this happen to you. NO GUILT. Just do what you can. ANd if you/they can afford it, hire a cleaning person or company to come in sporadically. Take good care of YOU.

I had a perfectionistic mother growing up.

Perfectionists generally make themselves and those around them miserable.

I take after my dad. My dad had a very strong work ethic but he knew that he and others had limitations. No one is perfect!

I respect people who know their limitations and accept help when needed.

This attitude is smart! It isn’t lazy or weak. Growth is achieved in a healthier way.

Reading your posting though, doesn’t seem to be about perfectionists.

I read your posting as being more about frustration. Frustration is completely normal!

Caregiving is tough!

We are all caregivers or former caregivers here.

Some hands on, some monitoring from afar.

No matter what the situation is, it all presents a challenge for the caregiver.

I urge you to reach out for help. There is no shame in asking for help.

We want to feel like we have everything in control but the fact of the matter is that we all need each other.

Best wishes to you and your family.

My father was one of the smartest men I have ever known and was an A student throughout his school years. He was a WW2 veteran and did his job with honor. He had a saying that stuck with me all my adult life. He said there is always someone smarter and one should learn from them. My mother and father had a very strong work ethic and they passed that on to their children. They both were very hard workers. My dad did everything with ease and did it well, was was a humble man, and I respected him highly. I am like my dad in lots of ways, strong work ethic, opinionated, impatient at times with others, and level headed. Like my dad I am somewhat of a meticulous type of person when it comes to doing things, but I have lightened up a lot these last few years. My dads anniversary of his death is coming up soon and I am proud to be called his daughter. He made a difference, was respected by many, and had a heart of gold. RIP, dad. Hugs.

Dear Tony11
Being a caregiver, especially to a parent, is the most difficult job. As you know, it tugs at your heart, overwhelms your mind, and fully drains your body. I took care of my father for 5 years in my home, by myself. I loved him with all my heart and tried to be patient and have compassion. I prayed for that daily. He was 89 and I 67. I wanted the best for him but I felt I wasn't doing my best...I'm a perfectionist also. I wanted, and needed, to be a daughter also and show him kindness and to overlook so much without saying anything. After he passed almost a year ago now, I struggled with guilt. I wanted to be a perfect caregiver, but I let things get to me. It was so hard. BUT, I've come to realize that I did my best....I tried. And I told him that I loved him even though he would yell and call me names and sometimes I got scared. I feel very blessed to have been able to do what I did for my dad. It wasn't perfect, but it was my best and I did it out of love. That, will always comfort me. I feel very honored to have given my time and love to take care of him. He was a great father and loving man. I'm so thankful I didn't put him in a facility. I gave him a nice home until the end. I hope this helps you to feel better about what you're going through. It's okay to feel less than perfect...just be proud of yourself for doing your best.

Tony11: Imho, you should not hold onto any guilt. You are a stellar caregiver to your dear mother. However, you may require assistance with the toileting issues. Prayers sent.

You are a Blessing to her and your family. Remind yourself of that. When I am beyond exhausted is when i try to remind myself “someone else has it harder” or that “I am Not alone in my feelings - anger or joy”. I pause and remind myself of the 40/60 million of us out there just doing our best. We will have moments that nothing about the whole day was perfect :). I say this after a long and challenging day - and I try to find a giggle in the moment of how insane this sometimes seems - even if I have to dig really deep for that laughter.
Again - she is blessed to have you :)

No, you shouldn't feel guilty; but we all feel/felt this way during this journey.Sometimes it's helpful and keeps us on the right track; and other times it's the most frustrating feeling. It's all part of this roller coaster we're on. Just try and roll with it and don't punish yourself. I've done that to myself for far too long and; with the help of my Psych; I've been able to ease up on myself. We're not perfect as I'm finding out about myself.

You are not being a perfectionist - you are trying to do the right thing for her. It is disgusting that she does what she does due to dementia. This woman should NOT be living with others. She belongs in a facility. Don't put up with this.

I don't really understand this question. How is cleaning up after your parents being a perfectionist? If they make a mess, the mess needs to be cleaned. If your mom peed on herself, then of course, she would need to be changed.

I'm sure that all of us in this group have had our loved ones be resistant to being cleaned and changed, and we've had to raise our voice to get them to cooperate.

I just don't understand what that has to do with being a perfectionist.

what does she do when you are NOT there for the other days when she can't make it to the bathroom? do you have other caregivers come in or what? sounds like maybe she needs to have 24/7 care for her (if your dad is doing okay). Maybe be placed in an AL or MC facility where someone can check on her every day. It is tough, but if no one is there the days you are not, is she in wet or soiled clothes for a couple days? sorry but I don't go into check the person posting to see what all their background is, but it sounds like if you are only there 1 or 2 days out of 7, what happens the other 5? wishing you luck.