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mamaperiod Asked April 2016

Now what, mom has been diagnosed with full blown dementia, what can be expected going forward?

She has to be restrained at night, she is constantly talking.

JohnnyJ Apr 2016
When my friend became un-cooperative in her memory care apartment and she wouldn't let them clean her up when she soiled herself, I took her to a geriatric ward in a hospital so they could find a drug or drug combination that would calm her down but not dope her up. They were able to find a good combination, but it took 3 1/2 weeks. Insurance covered the full cost of that. After that, the AL facility had no further problems seeing to her care. It was the skilled geriatric care that provided the answers, but she was declining fast and when her brain would no longer allow her to swallow food, she died soon after. She was in the final stages of fronto-temporal dementia and there was no stopping or delaying the inevitable.

goodsign Apr 2016
I beleive a patient must be cooperative and progressing to receive therapy.

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BarbBrooklyn Apr 2016
Are there geriatric psychiatrists in your location? Or doctors who understand that there are meds that can help dementia patients be less agitated?

Any doctor who recommended physical restraints is probably not well trained enough to be giving you reliable advice about your mom.

mlface Apr 2016
You must enter into your mom's world. She is in a crowd, knows no one know she should be going some place but doesn't know how to ask or talk & surroundings she doesn't know. It's like panic but restrained on top of it all. Security is needed at all times. They need to feel someone is with them to be their rescue. Keep this in your mind. They will never enter our world & can't but we must do our best to know their world so read, read & read. Go to support groups where they have been where you are. Try diff grps. Read Understanding the Dementia Experience. Online. Bk 36 hr Day. Call Alz Assoc for support grps & what Alz has to offer in ways to help you. God bless you.

mamaperiod Apr 2016
The way she is restrained is for her best benefit. You personally may not agree with restrains, I respect your opinion and your concern. Though out paths are similar, they are not the same. Mutual respect, please. She is carried for greatly, gently and kindly. Restrains are only administered at night, under supervision of her caring doctor. Not, abusive or harmful. It is the families utmost concern to care for this precious woman. Please, don't judge us to harshly.

sherry1anne Apr 2016
Have her checked for a Urinary Tract infection. This is the most likely reason for this behavior. My mother would go out of her mind when she would have a urinary tract infection. Also, if she retained too much fluid (with afib) whe would go nuts as well. They had to restrain her and put her on Adivan until the infection got under control. It may seem overly simple, but Mother was sane, even though she had lost some of her brain power due to stroke. She did not become violent unless she had a UTI. Please don't ignore this.

sherry1anne Apr 2016
Oh, and BTW even the neurologist missed that the UTI was the cause and diagnosed her with Alzheimers, although she was 103 and did not have a history of Alzheimers. He did not test for anything. Her cardiologist said she had dementia. Her PCP said the same. She was tested when I took her to the hospital and they found it. I got her in with a good urologist and she treated her with antibiotic bladder wash for the final year of her life.

EllerySir Apr 2016
Christy isn't my mom. She is my wife of 45 years. My best buddy. We were the couple everyone wanted to be. She has been in late stage FTD since 2011. We are blessed that she is physically healthy and very strong. But she is resistive and combative to every assistance. Toileting requires 2 of us. Cleaning her is like wresting with a wildcat. We have the procedure down to a science.
What mlface said, describes Christy.

"She is in a crowd, knows no one know she should be going some place but doesn't know how to ask or talk & surroundings she doesn't know. It's like panic but restrained on top of it all. Security is needed at all times. They need to feel someone is with them to be their rescue. Keep this in your mind. They will never enter our world & can't but we must do our best to know their world"

It has taken us 5 years to fully realize that Christy can't learn, but we can.
We do not even restrain her as we assist her in sitting, standing, bathing, and directing away from dangers. She doesn't know me and I have to avoid any touch when sleeping. Flailing arms in a restless night would cause either one of us to invade the other's space. Christy has little cognition, but suddenly started sleeping in the opposite direction from me. As we have to set her in bed, she would force us to direct her the other way. All those years of sleeping together, I wonder why I never thought of that. It allows for a comfortable cuddle. In her sleep, she will often lay her head on my thigh and I treasure those moments.
When she is awake, I do not dare touch her, but when I happen to get out of bed before she does, I check on her and often find her patting my side of the bed, looking for me. I immediately let her know that I am at least in the room and she is satisfied, but she still doesn't like me.
No restraints. They tried to admit her to a top geriatric/psyche unit for a 14 day eval in 2014. She would not let them get her vitals, upset the crash cart and went after the staff. She is not a maniac, wildly out of control. She is deliberate in her moves. They could not admit her without both chemical and physical restraints which are against the law unless only applied for her safety, not their convenience.
She will get up and wander in the night, but the house is arranged for her safety.
As yet, her movement wakes me. I am also on guard as she stops breathing often and I have to jostle or re-position her. Our Cpaps burned in a house fire 6 months ago and it is difficult to get a replacement as she can not do a sleep study.
She doesn't know us and we don't know her, but we still laugh often. Her actions don't make sense, but we just call her a 'scamp' and laugh with her.
On her alert days, we watch scanning the room for something to get into, but her brain doesn't recognize anything. We delight when we see her gaze fix on an object and reach out to it. We are ecstatic when she will pick the object up. But it always just 5 seconds and she will drop it.

Rosebush Apr 2016
I just wanted to say thst a caregiver is a caregiver, regardless of the situation, caring for some from a distance, in a facility, at home, your home or another family members home. It doesn't matter, they are all different but basically the same. Some people were born caregivers, others are not. Some people have more responsibilities other then the patient and some of not. Some people have tried to keep their loved ones home until they were no longer able to do so. Whether physically or mentally they had to make a very heart wrenching decision to place their loved ones. I think we can have discussions without downing others for the decisions they made. We don't know the circumstances and it is not our place to judge. (I know I have been guilty of that) We are all here seeking help and suggestions or sharing our experiences. This is a great forum and I want to thank everyone for trying to help others with suggestions and ideas. This makes it easier for the next person going through their journey with their ekderly loved ones.

Caregiverhelp11 Apr 2016
Hi there

My mom is in a nursing home, has dementia, and can no longer walk. Since
we moved her to a nursing home she has tried getting out of bed several times
and ended up on the floor. Luckily she did not hurt herself. They have since
put an alarm on the bed to detect movement.

I would never want my mother to be restained! You can put pads on the floor
on each side of the bed, you can lower the bed as low to the floor as possible
to prevent injury when sliding out of bed.

I would suggest talking to another physician or other health professionals for
a better solution. Good luck.

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