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Mom says she doesn't need help
DSG19
Posted: Tuesday, May 14, 2019 2:36 PM
Joined: 5/14/2019
Posts: 2


Mom was diagnosed in Sept. 2018 with Alzheimer's.  She's 88 and still lives alone, and needs part-time help.  We found a wonderful caregiver who mom liked and vice versa, but mom fought us on having her on a regular basis, to the point that mom wouldn't let her in the house.  We've taken a break and want to re-introduce her on a more limited basis, with a "therapeutic lie" -- that the caregiver misses mom and wants to cook her a meal., etc.

We've tried reasoning with mom regarding help, but mom absolutely insists she doesn't need help and is very stubborn about it and were not sure our plan will even work.

Without telling mom "you absolutely need help" and pointing out all the reasons why, we are at a loss as to how to get the caregiver back to mom's.

This is my first post so excuse me if it's not exactly "correct."  Many thanks in advance.

DSG19


pidgeon92
Posted: Tuesday, May 14, 2019 7:27 PM
Joined: 10/25/2018
Posts: 238


Your post is fine.

Nobody with dementia needs help. Just ask any of them, they're all fine. They can all do for themselves. I really believe that in their own mind, they absolutely believe that. If you'd have asked my dad who did all of the work in the house, he'd have told you it was him. The cooking, the cleaning, the gardening. Except he had barely moved from the couch during the rare hours that he was awake for those last few years.

You cannot reason with a person with dementia. You cannot even show them that their hair is matted because they haven't showered in a month, they simply do not see it.

The only path for me, with my dad, was to move him to memory care. Sooner than later your mom will need 24/7 care. You need to decide if someone will move in with her, if you can afford 24/7 caregivers, or if she will be moved to memory care. Please don't wait until there is a crisis, like I did.

 


hkuchera
Posted: Tuesday, May 14, 2019 7:31 PM
Joined: 9/18/2018
Posts: 41


 If I've learned anything in the 3 months I've been living with my mom, it's that there's no reasoning with someone with alz/dementia. My recommendation, for whst its worth is to do exactly what you considered. The caretaker misses her and wants to visit, make her lunch, what have you. Slowly increase "visits" and hopefully your mom will come to accept her.

Mom fought my sister and I when we first arrived - she did NOT need help with cooking or cleaning or caring for things. When we started phrasing the help as "I'd love to do this for you!", she started to accept the help. Now, if I let her do some little task like setting the table or drying dishes afterward, she's pretty content.

- Holly


jfkoc
Posted: Tuesday, May 14, 2019 7:38 PM
Joined: 12/4/2011
Posts: 17069


You might also try "Mom, she needs the work. Can't we help her out a few hours a week?"
caregiving daughter
Posted: Wednesday, May 15, 2019 7:25 AM
Joined: 11/27/2012
Posts: 2057


You could try caregiver is really a housekeeper. You are giving mom "housekeeping services" for mom's day, her birthday, her anniversary, etc. Another idea is doctor is requiring vitals be taken several times a week so this person will do blood pressure and then the person will stay for a bit.
JAFdaughter
Posted: Wednesday, May 15, 2019 8:48 AM
Joined: 4/16/2019
Posts: 13


This is the story of my life right now! I feel the exact same way. Mom is living on her own and insists that she doesn't need help and can do everything herself. We have hired her neighbour who is also a good friend that cleans houses to help her once per week. Mom thinks she is cleaning and doing laundry like she has for the past 80 years but in reality she's not. And she tells everyone that she still makes her own meals which again, she was very good at doing up to the last 18 months. We've convinced her to take Meals on Wheels 3 days a week so this is week 1 and she is already saying that she doesn't need them. In reality she's eating cereal for supper most nights mostly because I think it just takes too much mental energy to think about what to cook. When I tell her that cereal is not something she should be eating for supper every night she makes it seem like it only happens once in a while but we monitor her fridge and freezer and we know she's not eating much else.

The only thing that works is that if we tell her that for her to be able to stay in her home she needs a bit of help. But she'll agree to something and then forget that she agreed. Thankfully she's not very combative but it's so frustrating to try to help someone and they sabotage it constantly! I know you're not supposed to convince or argue but it sure makes it tough!

So I don't have answers but I have a lot of empathy for you!!

 


vanessabond
Posted: Wednesday, May 15, 2019 11:11 PM
Joined: 5/15/2019
Posts: 1


Hi there,

I'm new to this forum but I really relate to your post. I'm 34, an only child, taking care of my 74 year old mom, on my own, who has been very independent her whole life. She was officially diagnosed in August of 18 but now that I know the stages of ALZ, I think she's had it a lot longer than anyone thought. 

My mom is absolutely convinced she doesn't need any help... yet I have stopped working since the first of the year to help her take care of her. I pay all her bills, take her to all her doctors appointments (she lost her license), buy her groceries/bring her dinner, manage the apartment building she owns and handle everything in between. 

When we go to see her neurologist, she says, 'she's FINE and is 100% independent.' It's so hurtful since I've put my life on hold to help her. And I'm very grateful that I am able to help her, but it's very hard to hear someone who relies on you for everything tell a doctor that they don't need you, when she calls me 30-40 times a day. Clearly the doctors see through this, but it still breaks my heart. 

I'm in the same boat as you, so I don't really have anything to add except support. I'm sorry you are having a hard time too. 

 I'm really new to this and since most of my friend's parents are much younger than my mom, I'm trying to find a support network to make this difficult time not feel so lonely. 

xoxo


MimiMinder
Posted: Thursday, May 16, 2019 6:41 AM
Joined: 4/23/2018
Posts: 108


Welcome to the group! So glad you joined us! (Also @vanessabond, if you are reading this reply, you might want to repost your reply as its own topic)

I don't think any of our LOs acknowledge that they need help, so we have to see what is the best situation for them and how can we keep them safe. A few years back, my mom wanted me to see the nice, clean spot in front of her recliner. When I asked how she did that, she said the nice men who came to the door offered to clean anything in the house for her! She saw absolutely nothing wrong with letting two unknown men into her house. Luckily there was not a tragic outcome, but my mind raced to horrible places. And I am glad I walked in the time she was starting to give out her credit card number to the person on the phone who indicated her bill hadn't been paid. 

The only way we were able to get my mother to move into AL was because it was her idea (not that she remembered it). She kept saying "I have too much to manage" and while she could not articulate what was too much, she did not want help in place with any of the cooking or cleaning. We toured various AL facilities and an opening came up quicker than expected at the top choice. After we got her moved in, it was evident how exhausted she was from trying to keep it together at her old place. 

My top priority is keeping her safe, followed closely by honoring her and respecting her dignity. She has a few dollars in her wallet, but no credit cards, so there is no way she can get swindled by a phone solicitor. I manage the meds, schedule the appointments, monitor her email, and provide her with outings as often as possible. I thought I would be serving as 'social secretary' and managing her calendar, but her former friends seem to have forgotten about her or maybe they just are not comfortable being around someone who repeats herself, loses her train of thought, and has no verbal filter. 

Sorry for the tangent, but to your issue --Yes, your mother needs help and there is no way she is going to acknowledge that. If you can figure out what works for your mom, that might gain her cooperation. For me, if my mother thinks she is helping me out (keeping me company on errands when my actual goal is to get her up and moving and out of her apartment), she is all in. I tell her what she needs to hear - not necessarily what is the truth in a non dementia world.

Good luck and keep coming back! 


windyshores
Posted: Thursday, May 16, 2019 7:34 AM
Joined: 2/16/2019
Posts: 66


It's very common for people with dementia to value independence above all else, and refuse help. My mother is refusing help even with a broken pelvis! 

One thing that helps is to not ASK if she wants help but just go ahead and do it. Granted not all tolerate that either, but asking brings the opportunity to say no

We have not found this refusal habit to be any better in assisted living. I just want to make sure folks understand that at assisted living, the residents are tenants, not patients, and if they say no, the staff have to go along with it. My mother has been in AL for 4 years and until her recent colostomy, we were paying big bucks for her bed to be made!!! That's all she would allow. (Embarrassingly she calls the trained aides, "maids.")

As for what they tell doctors, well, according to my mother, she is still playing golf and tennis   I write a note to the doctor, any doctor, before an appointment and have the medical office person give it to the doctor to read before they come into the room. I tell the doc that my mother has dementia but likes to have control in the appointment. That her info is not reliable. And I describe what the actual problem that brought us there, is, since she won't remember. That way I avoid the times when I have to talk in the appointment, which makes her mad. When I do ask a question, I ask her permission!

We cannot be hurt by what they say, hard as it is not to be. My mother cries and asks me not to leave, but guess what she tells her friends at the table? That she wishes I would stop coming so often and leave her alone!!!!! Her pride is wounded by my presence in front of others. (Though her friends have asked if I would be their daughter, kind of sad.)

 


JAFdaughter
Posted: Thursday, May 16, 2019 10:06 AM
Joined: 4/16/2019
Posts: 13


Thank you Windyshores for your insight. That's a good point regarding AL that they won't force help on your LO. I assume that it's that way until they get to MC. Sounds like you could have the same frustration even if they are not longer in their own home.

 I like the idea of writing a note to the different service providers. What I've realized is that even though the doctors office referred my mom to have different people come over and assess her, they don't really have all the right information so my mom tells them that she can still driver herself where she needs to go and she makes her own meals, showers every second day etc. I'd rather not constantly be contradicting her in front of people.


DSG19
Posted: Thursday, May 16, 2019 10:59 AM
Joined: 5/14/2019
Posts: 2


Thank you to everyone for your replies.  We're learning, learning, learning, and hearing what we're going through is very common with you all is helpful.  It also helps to validate some of our actions, thoughts and plans with Mom, which helps make us feel that we're on the right track.  I also picked up a few new ideas. 

Thanks again to all. 

Dee


SunnyBeBe
Posted: Thursday, May 16, 2019 12:52 PM
Joined: 10/9/2014
Posts: 641


There are great suggestions on this thread about how some have gotten their LO help, protection, etc.  I say that whatever works is great, though, sometimes, the LO is very resistant and refuses any help.  And, when that happens, someone in the family, hopefully, someone who has Durable POA an Healthcare POA, can make some tough decisions, because, if she's not competent and living in a dangerous situation, she can't continue to be in charge.  So, regardless of her decision, a better and safer plan may have to be implemented. 

I'd also keep in mind that sooner, more so than later, just a part time person may not be sufficient.  Leaving a person who has dementia alone, for even a few hours, is generally not advisable.  There is no way to ensure that they won't forget to turn off toaster, put improper items in microwave, eat nonfood items, mistake medication, wander from the home, allow stranger into the home, etc. 


 
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