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

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.

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.

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".

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.

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.

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.

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.

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!

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 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.