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How do you protect someone who just does not understand
Posted: Wednesday, September 11, 2019 2:56 PM
Joined: 9/5/2019
Posts: 42

Some quick background...

I am the only child if a single/divorced mother

She has always been independent, belligerent, "my way" attitude, did not take advice well or listen to others. It was always about HER....

She is now 89 and in the grip of dementia/alzheimers. And her dementia/alz has only magnified these personality traits. She is very hard to deal with, and she currently lives at home with my husband and myself. 

She has fallen and broken her hip (2 weeks ago) and needless to say the surgery only made things worse with her behavior. And of course, this translates to "I don't need to use the walker" .... 

So, how do you protect someone who has no concept on how to keep themselves safe? Walking without the walker, and when I point out she needs to use it, she gets angry with me. Now she is trying to leave and "go home" when we have lived here for 4 years. And of course, when I tell her that she gets angry .... and I mean really angry....

She is getting up in the middle of the night and wanting to "go home"... The more I try to calm her down, the angrier she gets with me and she just gets combative. My Husband says I need to walk away from her at that point, but then I am afraid she will fall. His take is, if she falls, she falls, there is nothing we can do about it. 

How do you protect someone like this..

I have her on the waiting list for MC... but it may be a couple of months before a bed is available (the place I chose is very popular)

<sigh> Sometimes I wish she would just go to sleep and not wake up.....



Posted: Wednesday, September 11, 2019 3:07 PM
Joined: 12/15/2011
Posts: 3971

With a broken hip, the hospital social worker should have recommended she go to respite care for about 6 weeks to get physical therapy - that is crucial after a broken hip, then the respite social worker should have recommended that she go into MC.  Can you get with the hospital social worker about this?
Posted: Wednesday, September 11, 2019 3:18 PM
Joined: 9/5/2019
Posts: 42

HI MacyRose...
She did go to REhab, and the Rehab had a MC unit in house as well. But that was a complete and total nightmare. They did not know how to handle her. She fought, screamed, threw things, refused meds, refused PT, and was aggresive and combative. 

They tried meds, and that only seemed to make things worse.... 

I think it was a combination of over-stimulation (alot of people around her trying to tell her what to do), pain, confusion, fear, frustration. She does NOT do well when people try and tell her what to do, even me. And she does NOT process fear or frustration well. 

So Rehab pretty much kicked her out and I took her home. Even the MC unit at the Rehab place seemed too loud and bright to me, a large room, lots of people in the room, cartoons playing, music playing, people talking and making noise, so I don't think it would have been a good fit for her. 

I feel like no one wants to help. And the one MC place that I think would be the best fit for her is currently full... of course.... 

Posted: Wednesday, September 11, 2019 3:20 PM
Joined: 9/5/2019
Posts: 42

Oh and she is getting PT and Nursing at home right now. And I do have a Caregiver that comes when I am at work. But all the responsibility for her falls on me... and I am beginning to crack under the pressure...
Rescue mom
Posted: Wednesday, September 11, 2019 3:23 PM
Joined: 10/12/2018
Posts: 1475

So soon after a broken hip, seems like she should be in some kind of medical or rehab facility. Maybe her doctor(s) will help get her in one? What did they tell you after her surgery for the hip? Would they not help you get her into better care? Or, as said, the hospitals social worker?

Meanwhile, don’t argue with her that she IS home. She cannot grasp that. There’s no point  in arguing. Just agree, and say you’ll  go “soon,” or  when the weather clears, or when the car get fixed, or when it’s light outside. Whatever. Then distract her with a treat or some activity or conversation/question  about some topic she likes.

A simplified version: “OK we’ll go let’s have some ice cream.” Or, “ok, we’ll go when the rain stops. But right now, let’s watch this TV show you like.” Chances are she will quickly get distracted and forget and settle down.

Posted: Wednesday, September 11, 2019 3:28 PM
Joined: 12/15/2011
Posts: 3971

Yes, I meant rehab - thank you - I'm a little sleepy and couldn't think of the right word.  Did the rehab kick her out or did you just take her out?
Rescue mom
Posted: Wednesday, September 11, 2019 3:29 PM
Joined: 10/12/2018
Posts: 1475

I see you say rehab “pretty much” kicked her out, and it seemed to you like “not a good fit.” 

It might not have been perfect, or great, but seems like it would be better for her —and you—in the long run. Now you have her at home, and that sounds really tough. But it’s great you have people coming in to help. That’s huge.

Maybe a different rehab would take her? She might adjust better with more time and positive reinforcement. And you have MC lined up, right? So try to keep thinking there’s an end in sight, coming soon. Meanwhile, you are stronger than you think. It’s hard, but we do what we Have to.

Posted: Wednesday, September 11, 2019 4:54 PM
Joined: 3/8/2018
Posts: 808

Hello, welcome, glad you joined us

Oh, boy: its sounds like we have Mom Twins: fiercely independent and not going out without a fight. (And I’m an only, too)

It sounds like the hip surgery + hospitalization + rehab have brought on delirium, which can take a long time to go back to baseline.

I think since this is still recent, you have a window of opportunity to get her back into rehab...I’d recommend looking at a nursing home that has a memory care unit, and a geriatric psychiatrist on staff. Blame the move on her doctor, “to get her stronger, without the walker”. And if you are considering placement, it’s a good way to slide into it after rehab (that’s how I did it with my mom). She wasn’t happy for weeks, but eventually adjusted (meds helped, too). Keep in mind, the best place for your mom may not be the closest one to you/your family, mom is 45 mins away because I didn’t like any of the local places.

Posted: Wednesday, September 11, 2019 7:01 PM
Joined: 12/4/2011
Posts: 18335

How do I? What do I do? 

You can not fix this. Your husband has a point but that is not going to keep you from being distressed.

Some of what you post is very common behavior. You are going to have a struggle if you try to reason with your mother. I suggest, instead that you pour yourself into dementia 101. that means that you learn how to help your mother....a way that works for her.

There is a lots to learn and the people here know the ropes so read all the posts you can. Also read the site. It is listed right next to the sign in at the top of the page.

Then google Teepa Snow going home. It will begin to teach you about validation and diversion...the best tools you will have..

Then go to your library and check out any book by Naomi Feil. 

There is a lot to learn but every bit will be worthwhile.

Before I forget, let me remind you that any hospital/rehab/etc takes a huge toll on our loved ones. Those places are not trained to care for anyone with dementia. 

Do start your search for a MC. Most important is the training staff has. If they can not tell you what training program they use and just tell you they have a lot of experience  go to the next one. Training is far more important than looks or food!

You are going to be OK. 

Posted: Wednesday, September 11, 2019 7:37 PM
Joined: 10/24/2018
Posts: 972

Tamy, while I'm not an only, and my mom (almost 92, in MC, late stages) had a hip total fracture that sent her to the floor on July 31. She was (and is again) on hospice, and the least bad option which would give her a chance of continuing to walk was... partial replacement. In a hospital. Hospitals+Mom+family=disaster. It nearly killed my brother and me two years ago, and was not much better this time except when I got to sleep it was in my own bed. We hired 24/7 carers for her first two weeks back at her MC, who were fine with taking her back as she didn't need skilled nursing. Rehabs, any of them around here, are way too physically aggressive for a person of Mom's frailty, not to mention the dementia! Hospice came right back on the minute she got home, our RN visited three times a week for a couple of weeks, and all went.... as well as could be expected. She has of course declined significantly as a result of the whole experience, but She Can Walk! With standby assistance, sure,  but physically she is mobile again. 

One thing that helped her tremendously is that she has had astoundingly little pain. I've had two total hip replacements, and I was really really nervous about her first few weeks of recovery. God was with her, and now, nearly 6 weeks post-op, she's just on tylenol and not complaining of any pain to our brilliant "mobile cash-only" PT, who we engaged privately so as not to get her kicked out of hospice. We have decided that if the other hip goes, it's comfort care only. The end result would be the same anyway. 

The issue that caused her the most distress, and you've probably already found out about this, was and maybe still is the constipation. Two BM's in two weeks. Poor thing. Everything improved after each kne. A good dump just makes life so much easier, right?

Jo C.
Posted: Thursday, September 12, 2019 7:37 AM
Joined: 12/9/2011
Posts: 10745

Hello Tami and a very warm welcome to you.  This is certainly a complex set of challenges and I can well imagine how exhausted you are.

There are a few things that come to mind after reading your Post:

1.  First; when a Loved One (LO) with dementia is admitted to a hospital, especially if there has been a surgery; sometimes our LO develops hospital induced delirium that can last for quite some time and ramp up negative behaviors quite significantly.  This can last after discharge; sometimes for weeks, sometimes for months.  The following link has good information and while it addresses the issue while being in the hospital, some invervention ideas are also able to be used at home:

2,  The next thing I strongly recommend doing, is having your mother checked for a "silent" urinary tract infection.  These UTIs are called, "silent," because there may be no complaint of, or even no feeling of pain or burning, but most often there will be a significant change in behaviors to the negative side of the ledger until the UTI is treated.   When a patient has a hip surgery, a urinary catheter is often used during and even after surgery which can increase the risk of a UTI.  This is well worth checking.

3.  If there is unresolved pain or other disturbing feelings for your mother, she may not be able to process to recognize that so cannot communicate it and this often causes acting out.

4.  Medications, including pain meds can also contribute to accelerating negative behaviors.

5.  Best not to argue with her, try to point things out to her, or correct her.  The fact is, her reality is as real to her as the chair you are sitting on; to differ or argue with her will only cause heightening of the negative behaviors and even induce distrust in the caregiver.

6.  Wanting to, "go home," that is a common dynamic in many of our LOs.  In dementia, some or all of the most recent memories begin to fade and be lost, but long ago memories will remain.   So; when she wants to go home, she will be talking of an earlier time in her life; whether this was her home during her marriage and raising of family, or even her home when she was a young girl or child. Having delirium can increase this.   Simply use a therapeutic fib; "We will go tomorrow when our car is fixed and ready;, or . . . the house is having some painting (or repairs) done, when that is finished in a few days we will go home."  Then refocus her.

7. Try to listen to what she says and validate the FEELINGS behind the words and not the words themselve.   "I am so sorry I made you angry; (or you feel upset)"; whatever she is demonstrating:  I will do better, (or whatever); and then refocus her onto something else whether another topic, or doing a small chore, or getting some coffee and a sweet in the kitchen, etc.

8.  Here is an excellent detailed writing by a dementia expert, Jennifer Ghent-Fuller.  "Understanding the Dementia Experience," it is 30 plus or so pages long and is filled with good information.  The author has provided this free of charge and one can download and print it off to give to family to read for their understanding too:

9.  If your mother begins to be more amenable, it is good information to know that if she had three 24 hour days as an inpatient in the acute hospital, (outpatient days do not count), then she qualifies for Skilled Care Rehab.  NOTE:  A patient who has fulfilled those three inpatient qualifying days has up to 30 days after acute hospital discharge to be accepted by Medicare in Skilled Care Rehab ordered by her doctor and the patient fulfills criteria for rehab which your mother in all probability would.   Just a  bit of info should things change.

10.  Structure and routine in the home are necessary to get best results for our LOs with dementia.  Little upheaval, no loud noise including negative TV programs, no crowds of visitors, no ongoing changes in routine, a neat environment, meals and snacks on time, lighting sufficient, etc.

Some of this may be helpful while you are waiting for placment to open.  Getting her to use the walker is a difficult thing.  If she is just rebelling against you, will she do better with your husband or care aide providing the walker?  Not insisting; offering, "This will help you with the pain when you walk until you are better," sort of thing.  Still . . .  if she rebels and refuses, there is not much you can do.  Would she be more comfortable in a wheelchair if she has to walk any distance across the house if her pain is severe?  Yes; she should walk, but it may take some time as she is so close to post-op and we do not know how her pain level is.  Also, check to ensure she is not constipated; that too is often a point for agitation. And of course, have her checked for a UTI.

Best wishes are being sent your way; do let us know how you are and how things are going, we will be thinking of you.


Posted: Thursday, September 12, 2019 9:15 AM
Joined: 9/5/2019
Posts: 42

This is all great information and I am going to reread everyone's posts again....

I am just so overwhelmed with all this. I have been taking care of her for 10+ years. It is tiring, so very tiring. I just want it to be over. I pray she goes to sleep and does not wake up, and of course then I feel guilty about thinking that or praying for that. 

I so envy the people with cooperating parents with dementia/alz ... or with parents with no cognitive issues at all. 

As for the Rehab place she was at, that place did have a MC unit as well. But it was still loud and bright and busy and just over-stimulating just like the Rehab Unit. So I don't think she would have done well there either. Rehab pretty much did kick her out as being uncooperative and needing Geri-Psych... they had a Geri-Psych on call and he did see her, but that was it. It was a nightmare... I don't think she would do well in a Geri-Psych ward either...

The MC facility I selected (she is on the waiting list) I think will be a great fit for her. They have Geri-Psych on staff there, only for there. And the unit was set up differently and just seemed better managed, organized, everything. But of course I have to wait til there is a bed available. 

Meanwhile, I dread the nights, and her keeping me and my Husband awake. Last night was not as bad, but I was still up late and did not get the best sleep.

I know constipation may be playing a part here as she is complaining about her stomach hurting and she looks pretty bloated to me. I am going to mention it to the visiting nurse. Waiting to hear back from them now...