Hi, my mother (74) has pretty advanced dementia. She lives with dad (77). I visit them every 4-5 days, and stay 1to 2 days with them doing all the chores. My mother can still eat/ hold the spoon herself, but needs help in the bathroom. Whenever I am there, I clean her, but she can’t signal us for her going to the bathroom, which she does really late. From time to time l ask her if she needs to urinate and take her to the bathroom to urinate/defecate but often to no avail.
Tonight, my father had a shower, and no sooner had he walked out, when I started to clean and dry the area. My mother squatted immediately behind my back, in order to pee on the floor. Apparently she couldn’t hold it anymore. She hadn’t gotten up completely when I asked her firmly but not in a loud voice to get down a bit for me to clean her. She resisted a little but not much. Then at the doorstep I started to remove the soiled slippers and have her put on others. I did this firmly, too, without me really raising the voice. Mother was similarly (un)cooperative. Even though there was no real hurt involved, I felt guilty afterward for being a perfectionist, and somewhat unrealistic. Should I feel guilty? Thanks.
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.
Do also pay attention to signals that tell you "I may not be able to do all of this forever".
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.
Overall, mom is cooperative, and doesn’t give me really hard time with anything because she enjoys my presence and trusts me. On the other, l should make sure that she feels safe and won’t fall when I am doing something for her. With changing the slippers at the doorstep l didn’t have real difficulty, but in hindsight, l admit to having done the wrong thing in not having mom sit on the couch first, then change them.
Well, my two older married brothers live in the same building - separate floors right above my parents’. The sisters-in-law shower mom every 6 days or so, but don’t like to cover other aspects of cleanliness.
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.
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.
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!
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.
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.
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