Dignity
I'm not sure exactly how to ask this, but my MIL with Alz is taken to church every week. Her children feel she wants to continue this (although she doesn't remember if she went to church or not). My issue is that dementia was my MIL biggest fear 15-20 years ago - if someone she knew started showing signs, she'd talk about it being the worst thing that could happen to her (ironic huh?) and especially would comment if someone didn't look as 'put together' as they had in the past. Most days she doesn't remember to shower or comb her hair or even change her clothes unless told. Yesterday my husband took her to church as she was when he arrived to pick her up - same clothes she had worn all day, uncombed hair, etc. I reminded him of her worry about being seen like this and his comment was basically that she doesn't realize she's not as dressed up as she used to be and it's not a big deal. I feel it is directly against what she'd want and it's disrespectful. Am I not looking at this correctly?
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I think it's just a shift in caregiver perspective that happens as the person loses touch with their memories.
Whatever your MIL worried about in the past is HER past, and she doesn't recall it. She's no longer tethered to those concerns, and you don't have to be either.
As the disease progresses and the person loses more agency, it becomes practical to keep your eyes on the prize ( like getting to church on time). As long as she looked presentable it's fine. Certainly the other congregants know something is going on and won't judge.
It's lovely that your family is taking her to church. People with dementia can hang on to their religion a long time, and even though she may not recall the service, she may enjoy it in the moment. At some point she'll become hesitant to leave wherever her home base is, and she won't want to go to church (or out) anymore.
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I totally understand your concern. I sort of dealt with the same type of attitude with my husband and BIL who lived with MIL. I quickly realized if I was the only person bothered by the situation I was the person who needed to take care of it. We started arriving earlier to pick her up and I would shower her, fix her hair and get her matching clothes for the outing. I agree later that day she didn’t remember but while at church she would lite up.
Now years later we mainly only go to the doctors but I still make sure she is showered and dressed decently.
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Emily, thank you for this perspective. I agree but couldn't have said it so well. I still take my mom to church and have struggled with similar issues as MarLee has with her MIL. There are times I have made her change a blouse that is stained, and every week I try to get to her facility early enough to make sure her teeth are brushed and hair combed before we head to church, but that is about the extent of it.
She doesn't know it is Sunday until I show up and ask if she wants to go to church. She always says yes, but by evening if my sister calls and asks if she went, she cannot remember going. It's really tempting sometimes not to pick her up, but as you said, it is meaningful to her in the moment. I will not compel her to go if she one day declines the offer. Until then, with God's strength, we will keep the faith together ❤️.
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I can appreciate your impulse to want to protect your MIL's reputation and legacy as the well-groomed lady she once was, I have to side with the others so long as she isn't a distraction to others in their worship. Perhaps the answer is to go with your DH ahead of time and help her tidy up a bit. My dad became hygiene adverse but would submit to shower and nice clothes well into if we told him he had a doctor's appointment.
The woman who would have been appalled by uncombed hair no longer exists. If she is finding comfort in the familiar music and service in the moment, I would encourage family to continue so long as it works for them. It doesn't matter that she doesn't recall the outing hours later. Many families find liturgical music to be one of the last pleasures to fade in their PWD.
My bestie's much older brother had a massive stroke and ended up in a SNF with nothing in the way of short-term memory. She'd visit him every couple of weeks with a tin of his favorite cookies made from their mom's recipe which he would gobble up. By dinner when his wife came to see him, he'd completely forgotten she'd been there. If his wife showed him the tin, he'd say his mom had brought them. But it didn't matter, in the moment he savored the cookies and the time with his kid sister and that was enough.
HB
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Thank you all for your comments. It has definitely made me look at the situation differently. My MIL is very happy when she is there and loves to talk after church (that is the one part my DH has to show alot of patience with). People do seem to understand. I think what I realized too, is that this may be for my DH a way to retain some sense of 'normal' in the middle of all this. He has always taken her to church when he's gone. My MIL was officially diagnosed 2+ years ago, showing signs at least 4 years before that. My DH doesn't refer to his mom as having Alz. He says she has memory issues. He has never once said Alzheimer's out loud. It's so hard to know how to help.
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Yes she is still living alone. Her children have stepped up and have taken over finances, her meals and household things. As I said in my earlier post, they all seemed to be in denial when she was first diagnosed, and although they have become more involved with her care, they still don't seem to grasp the seriousness of it all (they still try to reason with her, correct when she forgets something and become frustrated that she can't do certain things). My own sons (and their wives) have told their dad that she shouldn't be alone anymore, and he says he can't override his 3 siblings. I feel like that is such crap. Department of Aging came over to see about getting her a homecare helper and I was surprised she didn't make more recommendations. They are waiting on paperwork to have someone come in 4 hours a week to visit with MIL. My DH keeps saying that my MIL always hated strangers in her house. I find it ironic, that what I said about her going to church as she is, and would be against what she would have wanted before dementia. And my husband disagreed. But where I see MIL seems much more comfortable with people in her home, DH brings up how she never liked it. Can't win. And yes, I actually just warned my husband that any one of my MIL neighbors could report them for elder abuse and that did seem to have some effect on him.
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@Victoria2020 has a valid point. I went to a patient home to video evidence of the need for placement in order to convince her physician that was truly needed AND that I was mandated to report if she was not placed. She got placed in care.
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Caregiving by committee never seems to be ...optimal. It must be frustrating to watch.
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I think listening to my in-laws discuss their plans (or lack of them) causes me so much more anxiety that I even realize. Not too long ago they met at my house to make some "decisions". Siblings only. I was in my den when I heard them talking about rearranging my MIL living room furniture, for no particular reason. I actually put my head down on my computer and thought 'yes, let's rearrange her furniture so that when she comes out of her bedroom, she's fumbling for lamp switches and TV remotes that are somewhere else'. They were supposed to be talking about getting someone into the home to help out. Nothing was decided that day, not even if they were going to rearrange her furniture!
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Inheritance is not an issue, as MIL has only her house and a small savings. My husband and his brother (who own a business together) have actually set aside money for their mom in an account for when she's goes into MC. MIL called 911 just last week - she thought someone was breaking in. The police came and checked everything out, but obviously could tell MIL was disoriented. She kept telling them to call my DH, but all she would say is his first name and 'he took care of her'. She didn't say he was her son. They found his number by going through her cell phone. We live in a small town and I followed up with the chief the next day because 911 is supposed to have ICE information on hand for my MIL. She actually told me that there our a few citizens like my MIL who they keep track of because they know they have some type of cognitive decline. I told my husband this and repeated to him, for probably the 100th time, that his mom was going to get reported to APS. It's maddening.
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This must be like watching a slow-motion train wreck you have no chance of stopping. I went through a phase where I was deferring to mom around decision making on behalf of dad-- it was so hard. She was too close to see the complete picture.
I worry about the risks and not just to APS involvement and the potential for losing a say in her care if found negligent. I worry, too, about regret should something happen to her because she is clearly unsafe living alone. This is one of those situations, like a fire or scammer, where a PWD is OK until they aren't. You might not get a warning.
There were a pair of sisters caring for their mom with dementia in a bid to keep her in her own home. They were a well oiled team working to honor mom's wish to remain in her home as long as possible. Mom was said to be in "mild" dementia in the opinion of DDs and the doctor. DD1 was an 11-7 RN who would come to the house in the morning to make sure mom had her breakfast and medications. She helped mom get dressed for the day and left her a plated lunch for later before leaving at 10:30. DD2 was a teacher who picked mom up a little after 3; they ran errands, fixed dinner and watched a little TV before DD took mom home and got her ready for bed and gave the nighttime medications around 9pm. They split weekends. An early morning dog walker found mom's nude body dusted with snow. She had started a shower and then went outside for some reason and likely died of hypothermia. The DDs weren't charged, but they have to live with how their choices weren't safe given the situation.
HB
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MarLee--any hope of bringing hubby/family onto the forum to look around at threads? I'm putting some favorite links below, if you want to share with any of the family. I feel sorry for your poor MIL with them moving her furniture around. It's hard at first to grasp how difficult something like that will make it for a person who can't form new memories.
'Understanding the Dementia experience' should be required reading, the Tam Cummings checklist is very helpful, and I think all the videos are good. The 'Moderate Dementia' video is excellent at laying out the changes.
It is very hard to flip the parent/child dynamic, and the path of least resistance is easier, but at some point the safety decisions should be built around the PWD's worst days, because the occasional 'worst' days eventually become the regular days.
A mindset of trying to preserve the status quo should change over time as the disease progresses. A common error is equating the person 's ability to hold a coherent (but repetitive) conversation with their competency. When I was first adjusting my thinking of how I interacted with my mom and assessing her safety I had to envision it as if she had sustained a traumatic brain injury. Otherwise my temptation was to interact with this physically fit person as if she could intake and process information normally, and it just wasn't so. Underneath that exterior was a person who was taking her daily multivitamin and thinking it was her levothyroxine. And she has no thyroid. Indignantly: "Of course I took it...I take it every morning''.
Understanding the Dementia Experience:
https://www.smashwords.com/books/view/210580
Tam Cummings assessment tools/AD checklist
https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf
Tam Cummings-Stages: https://www.youtube.com/watch?v=tansVVDM0fE
Teepa-10 early: https://www.youtube.com/watch?v=pqmqC-702Yg
Teepa-multiple videos: https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX
5 losses: https://www.youtube.com/watch?v=awBm4S9NwJ0
Anosognosia https://www.youtube.com/watch?v=5nw3YUDQJuY
Moderate stage: https://www.youtube.com/watch?v=6cZTgG6kDjs
Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg
Careblazers-How To Convince Someone With Dementia They Need Help: https://www.youtube.com/watch?v=ncKhXQtnyfI
Careblazers-5 mistakes to avoid: https://www.youtube.com/watch?v=rO50pVUOlbE
Dementia/Driving: https://www.youtube.com/watch?v=B3x5nQ7oB98
Talking to a person w/ dementia. https://www.youtube.com/watch?v=ilickabmjww
Talking to a parent: https://www.youtube.com/watch?v=oiUpztj2DkQ
Stepping Into Dementia’s Reality: Advice From Teepa Snow | Brain Talks | Being Patient: https://www.youtube.com/watch?v=EOCZInnLQd0
Teepa Bathing tips: https://www.youtube.com/watch?v=iKT9YIVPREE
Vicky Bathing Tips: https://www.youtube.com/watch?v=iu-O2KtgMWY
OT discusses changes: https://www.youtube.com/watch?v=zkKi9_-tYbQ
MC or Nsg home: https://www.youtube.com/watch?v=Cetf0Q566Hc
Adv dir. https://www.youtube.com/watch?v=ii73c8k63Ag
https://alzconnected.org/discussion/65171/books-about-alzheimers-disease#latest
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I so appreciate your comment. I actually read it to my DH. I said, I don't want you to say anything, I just want you to listen and put in in your brain somewhere. He listened and then got up and left the room. I feel it impacted him, but he won't acknowledge that. But I feel better putting those sisters' stories right in front of him.
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Thank you for all these links. I love Teepa and have watched many of her videos. Sometimes DH will watch, mostly not. But I am going to go through this list you provided, I really need to find something that addresses middle stage (but towards the end of mid stage). Last night, DH called MIL and she told him there were people in her house. He asked if he could talk to one of them and she said she was sitting in the dark so they didn't know she was there. He told her to turn on the light so she could see how many and after she did, all the 'people' were gone. Her voice on the phone (she was on my DH speakerphone) was nothing I had heard her sound like before. DH went down and spent some time with her (installed a light she hopefully can't shut off) but came home and left her alone. He reported it all to his siblings, but today, no changes.
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I think you have a good grasp of how she's being affected. It's a shame the 'deciders' don't. It must be very hard to watch them bury their heads in the sand.
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It is. And I'm finding some resentment with my DH because I can talk on the phone for 1/2 with my MIL and we laugh alot. I feel humor helps with everything. I use the same idea with my mom who has aphasia and some memory issues due to a stroke. I write down everyday 'mood over memory' and it's what I try to concentrate on.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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