Caregiver who is a nurse

debscohenrn

Hi,

This is my first post. My mom has dementia that has progressed to moderate. She is very stubborn and becomes belligerent if she does not get her way. She does not realize that she has memory issues and doesn’t understand why we are not allowing her to be alone. She is refusing to shower because she thinks she showers every day when in fact it has been a month. The hard part for me is I am a Complex care Nurse care manger, I work with adult children of parents with dementia every day. None of the strategies I teach work with my mom. Are there any other nurses here that feel like complete failures because they can't handle their own family member?

Thanks for listening

Deb

ronda b

I've taken care of my mom and dad, not with alz with other terminal disease. They were the hardest pt. I have ever taken care of. I was a nurse 30 years. Non of the tricks of the trade worked on them.

cdgbdr

I'm a master's prepared RN with an administrative specialty. It has helped but I don't have very high expectations after dealing with two parents and other family members with dementia. You do the best you can and don't beat yourself up over lack of perfection. This is hard.

SDianeL

welcome. I’m not a nurse but I learned so much from this online community. The best advice I got here was “you can’t reason with someone whose reasoner is broken” and I repeated that daily many times. She’s not being stubborn, it’s the disease. If you haven’t done so, read the book “The 36 Hour Day” which was recommended to me by a nurse. It explains why they don’t shower. Armed with that info I got my DH to shower twice a week by telling him it was our shower day annd getting his shower ready. Put a seat in the shower annd an hand held shower wand. Turn on the water. Get everything ready. Also look online for caregiving videos for dementia. Tam Cummings has some excellent ones and practical tips. People with dementia tend to take out their agitation on their primary caregivers. It’s harder when it’s your loved one. Come here often for support or to vent.

JulietteBee

@debscohenrn

I am an R.N. I have been since the 80s. My DM with supposed "MILD" cognitive impairment is my hardest, and worse, patient yet. Nothing I have been taught, or used, works with her. In our case, I think this saying is most accurate. "Familiarity breeds contempt." I firmly believe that she still remembers she is the mother and I am the "child." As such, she argues with, and pushes back against, anything I suggest. Hugs!🫂

SusanB-dil

Hi debscohenrn - welcome to 'here', but sorry for the reason. I am not a nurse, but mom was. We think this may have made her more aware of what was happening than most.

Each of our LO's is very different. What may 'work' for one, may be totally off-base for someone else. Your mom has anosognosia. This is not denial, but rather, the perception that everything is fine in their world, and everybody else is just there to aggravate them.

SDianeL is correct - read up on the shower issue. We have quite the issue with MIL.

You are NOT a 'failure'. Just find the method that works best for your mom.

Rule #1: Do not argue with a PWD. Rule #1: Must take care of yourself. Rule #2: See rule #1, both of them!

debscohenrn

https://alzconnected.org/discussion/comment/248129#Comment_248129

@JulietteBee That is so true, she reminds me all the time that I am the daughter, and she is the mother. She has always been a difficult person and is resistant to any caregiver. My father knows he needs help care for her but is resistant to giving up even the most menial tasks. This means they hire someone, the person has nothing to do, my mom feels like they are staring at her which means she sits there brooding, while my dad complains that he is paying for someone to just sit around.

debscohenrn

@SusanB-dil wow , I knew the concept of anosognosia, but had no idea it actualy had a name. thanks so much. I found an article and sent it to my dad and brother.

harshedbuzz

@debscohenrn

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

I think the reality of your predicament is that, in this context, you are not the highly trained and experienced professional you are elsewhere, you are a mere daughter. Same as the rest of us. It could also be that many of the strategies you're offering client families are as successful for them as you are now finding they are for you. Many is the instance I rolled my eyes at the advice of well-meaning experts— dad was extra.

Your mom seems very like my dad. He had a difficult personality prior to dementia which just seemed to enhance those challenging traits. Pre-dementia, dad had been meticulous in his grooming— he showered and changed clothes before work, after his near daily round of golf and then before bed. When the middle stages of dementia hit, he believed he, too, was showering as was his custom. I recall visiting on New Years Day to find him wearing the remnants of Christmas brunch in his beard and on his tee. My mom was beyond upset about this. When I pointed out he was wearing the same shirt he looked at me and said "I've laundered it". This from a man who I had never seen do any household task like cleaning or cooking in the 60 years I knew him.

Mom really struggled with this. He would usually take a shower ahead of a doctor's appointment, so that sometimes would work. She even spilled things on him to force a change of clothing at times which is not a great plan but she was desperate.

This is a great video. I didn't find it until after he had passed. That's Teepa Snow— she's as close as there is to a Dementia Whisperer.

https://www.youtube.com/watch?v=Jk-sPq0-sQ4

HB

debscohenrn

https://alzconnected.org/discussion/comment/248144#Comment_248144

Thanks, you are 100% correct. I expect myself to be the "expert" when I am only the daughter. I realized recently after the death of a dear friend that I go into deep denial when it is a loved one. I am the nurse I will know the signs and know how to fix them. My husband kept saying he looks terrible, it won’t be long. I was shocked when he entered hospice. I need to recognize these defense mechanisms and remember I am only human, the baby of the family and the daughter who moved away to separate herself from the chaos of my family.

psg712

Oncology nurse for 30+ years here. Nursing experience is helpful when navigating the healthcare system, understanding the terminology, tracking effects of medications and so on. On the other hand, it is sometimes ineffective or even a liability when the patient is our parent.

When I faced the reality that my mom had more than just age-related cognitive changes, I too felt like a failure. How could I have missed it? I'm a nurse! Thinking back over the years prior to her diagnosis, there were many signs ... but there was always some "reasonable" other explanation for them, and I lived too far away to witness the daily pattern of behavior that might have tipped me off.

Then I dealt with the struggle to help other family members understand the need to get her into a safer living situation. I found that being a nurse did nothing to enhance my credibility with siblings and uncles. I was just the controlling daughter who planned to uproot mom from her familiar world (where she was flooding the basement, starting grease fires, mismanaging her meds, and falling prey to financial scams). And she started a program of calling old friends and telling them that she was being forced to move against her will. None could believe that she was truly impaired. I just had to do what needed to be done without a lot of buy-in from others who love her. Thankfully she had a solid DPOA giving me that authority. And with progression of her disease, most of the others now see what they couldn't before.

Don't spend time and energy beating yourself up over things that aren't working for you and your mom. With our patients, we can maintain some level of objectivity that allows us to function in a professional helping role. With our parents, there is personal history and emotion and the complexity of the larger family to contend with. We do the best we can. One day at a time!

New day every day

Wow same her, ditto. I too work in the medical field with patients with dementia and their families every day and then came home to care for my mother with progressing dementia. And yeah I have great interactions with my patients and their families and then would go home and feel like I was failing not able to give my mother what I gave my patients. The feelings are real! All the tips and education people share are great but none of us are perfect all the time. Trial and error - learn and repeat. And I also realized it’s easier with my patients because I don’t have expectations of them like I do for my mom. I take them where they are and I work daily to do the same for her. Sometimes I succeed sometimes I fall on my face did I say trial- error- learn - repeat. Just ramblings of a daughter struggling daily. Hoping to share grace along the way.

SwanMoon

Thank you for posting this. On 9/4/24 i went to hospital to one reason and found out a lot more. Found out i had dementia, mild cognitive. Also am APOE04,3/4 with PET Scan showing lewy body dementia and alzheimer’s. i appreciate your letter as it allows me to provide my caregivers with patterning skills now. How does your family member respond to religious singing, movies, educational pieces? For me, we have to mark the calendar every other day for a shower. Once the shower is completed and my day is done i get to X out that shower segment of the day. There are so many excellent choices here, please have a wooosah moment for yourself and absorb the love and knowledge poured out to you. Thank you again for this forum.

Betsy Thomas

Hi, my 101 yr old mother lives with me. The past week she has been unable to sleep, walking for 22 hrs. straight. She and I didn't sleep for 4 days and finally was able to get Home Instead to send someone to be with her at night so I could sleep. I am desperate. The hospice nurse and her primary are baffled, trying different medications and nothing. Haldol, Lorazepam, Seroquel didn't touch her but make her more of a fall risk. Has anyone experienced this. Thank you.