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We recently added an additional caregiver to mother's care team. Initially things were going beautifully and appeared the relationship was a good fit. But after a recent hospital admission that came about because mom accidentally triggered her medic alert button during the night and was unable to effectively communicate to the EMT that her speech was a result of the dementia rather than a stroke. EMTs aired on side of caution and transported her to hospital against her consent. Since that incident I have noticed a significant decline. She has become even more fixated on her fear of dieing than before. Round the clock care has become necessary (understandably) and with that has presented some behaviors that have led me here. On a daily basis she spends the majority of her day talking about dying. On one hand she is petrified of being left alone for fear she will die alone. And then always follows that up with threats of killing herself. Which then usually progress into a prayer to god to help her. And now she has decided that 1 of her caregivers is trying to murder her. She will not really eat for her. She won’t take her meds for her. She won’t stay inside the house with the other caregiver and came up with a bruise on her arm that she said the caregiver caused. When I questioned her about it she said that bruise was already there (which it absolutely was not) when I questioned further she agreed that she had grabbed moms arm to prevent her from running out the door. Mom's always been a bit dramatic but she is not a liar. So I believe that mom truly believes what she believes. I am afraid we are at a point where while financially it would be the better option to admit her into memory care, with moms anxiety and age (97) she would not last more than a couple of months. She would literally feel so betrayed she would give up.


I know there is an answer to this dilemma I just don’t know what it is. I’m hoping some fresh eyes can bring to light some alternatives.

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Update: I’ll try to answer as many questions as I can.
- Mother has so much anxiety when it comes to dr and hospitals. This is why I feel the hospital trip was so traumatic that it forced the decline. They did X-rays, eegs, echo cardio looking for blockages, mri on brain, blood work ups, they brought in speech therapist who watched her eat and swallow, physical therapy to watch her balance and for nearly 3 days she endured this despite NO negative findings, All this was done under sedation because of the extent of the agitation it has caused. We were eventually able to go over the admitting dr head and have her discharged. Up until that point she had done very well living alone. No memory impairment, no wandering, She has had help during her waking hours but we saw no need for someone while she slept. Before discharge speech therapist recommended a card she should carry in her pocket and possibly a note in a well visible place explaining that she has aphasia. She said this would eliminate this from happening in the future,
The reason we don’t feel a nursing home is the best fir for her is mainly because of her reaction when ever we try to pursuade her to simply consider that she may be happier. I think she associates that with going someplace to die. She still enjoys her outside activities like riding her bike and walk around the block and she would have to give that up.
Her caregiver helps her do the things she has always loved to do, Go to church and social get together with friends she would no longer see if she were in a NH. They do lots of exercises that promote better communication, organization and anything else that she may not be able to do in a place notorious for understaffing.
However we have already paid a deposit down to ensure if/when the time comes that she is no longer able to be safe in her home, everything is ready for her to be moved.
When they sent her home from the hospital they put her on 2 drugs to treat Alzheimer’s. After a week it became clear that the medicine was most likely the cause of most of the behavior issues. They caused extreme paranoia, and confusion like I’ve never seen her go through. Her “real” doctor said take her off of all of it. She has never like medicines. Now a little over a week later she has almost returned to her preadmision state.
Believe me she is not in a bubble. She is never by herself except for when she sleeps.
i am looking at quality over quantity. Because Moms quality of life is in her home where her husband and best friend died.
She is in a 55+ community. But to Justjeana and all the others who suggested it I think she would benefit from a geriatric psych dr.
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MissingCally Aug 2018
If you move her to assistant living she won't have to give up all her activities. She maynot be able to go biking by herself, but you can find a facility that offers these types of activities. My mother is in an Assistant living facility and she goes to exercise 2 to 3 times a week. One of the attendants walks her to the facility. She gets herself up on Sunday and goes to church wearing her heals, suits and hats. We have scheduled for the shuttle to pick her up every Sunday for church and it picks her up after church and brings her back. On occasion someone at church will take her to dinner or I will call and cancel the afternoon shuttle and pick her up from church to go out to dinner. She also takes the shuttle to get her nails and hair done. I schedule the shuttle and they pick her up and bring her back. In certain facilities they offer so many activities your loved one can pick and choice, the most important thing is there is someone around at all times to watch after them and administer their medication and fix their meals. We also make sure my mom has fruit for snacks in her room. In addition, she may not like the idea, but you will have to do what is best for her. Living alone may not be the best.
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Hi, if you want your mom to focus on living instead of dying, give her a life. She's in prison now. How can she focus on anything besides herself when she's always by herself?

Have you visited a Memory care facility, or is this " contempt prior to investigation"?

Mom has near 💯 years of life under her belt, now she's alone in a bubble. Humans weren't designed to be alone. Dont kid yourself, a caregiver is not a social life.
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LeeMac Aug 2018
I am a care giver and I agree. There is only so much a care giver can do to ensure plenty of activity. Lots of times a person staying in there own home with care giver(s), refuse to partake in activities. Although for the most part I view adult family homes and assisted living facilities as the last option because most just do not care enough to really take care of someone with compassion and critical eye to the needs of each person in their facility, however, I have found one adult family home(s) that is stellar! I wish more were like this. Instead of describing it here, here is the web address, it is located in Washington state which probably isn't where you are. blueberryseniorcare.com. Or search for Blueberry Gardens in Bothell, WA.
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My mother went through a period of time where she was extremely fearful that she was dying asap, she was having heart attacks, she couldn't be alone at all; all these things were
not my mother". Come to find out with the help of a Geri-Psych that she had such high anxiety all she needed were some MILD meds, in her case, Ativan, and it turned her around in a short amount of time. It's ever-changing, ups and downs, good days and bad days. My family and I and her aide record everything from her daily mood to what she ate to sleep patterns. She is so much happier and a lot lees stressed. Definitely talk to a Geriatric Psychiatrist, IMO.
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You need to put her somewhere she is safe at all times. It really maybe be time for an Assistant Living facility that has 24 hour attendants, and it still allows her some autonomy. She can be with others her age where she can socialize and get the thought of death out of her head. The reality is we all are going to die, but it doesn't have to be a constant conversation. If she is fairly good health for her age give her a reason for living. Would you like to be surrounded with people younger than yourself and no one to relate too? She may be upset at first for moving her, what you are doing is putting her in a place where she can live a little longer and you can have a peace of mind knowing that she is receiving the care she needs 24/7.
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I agree with those who advise installing a hidden camera.

It is the only way to find out the truth.

It is legal to videotape, in your home, if there is no audio.
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I would replace that particular caregiver. Why did she lie initially when questioned about the bruise? If that's all it was, she should have said that first instead of saying the bruise was there all the time. If she lies once, she'll lie again. I would release her and get someone else.
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Perhaps you can get a nanny cam or 2 to keep an eye on things. I'd tell the caretakers.
I think your mom was stopped from doing what she wanted to do and resented it, or felt fearful that she is no longer allowed to control her actions, and environment in her own home. That is a realization that doesn't sit well with a lot of people who were fiercely independent before. It is scary!
The caretakers went from friendly, to telling her what to do/not do. And it was going to happen. She is powerless to stop it.

That can change the elderly person's demeaner. They were able to control what they wanted to do, but now can't. She could have been stopped for safety reasons, or for transition reasons i.e. Turn off tv, it's time for bed. It's 1030 at night. Or you need a shower/change of clothes now. For fiercely independents that's an affront. Altho they might not see they haven't had a shower or change of clothes in many days. They dont see it that way.

The elderly person resents not being able to control their bodies, or environment, and autonomy and they know it. They resent it, but also know on another scary level they need more help, and are not in control of remembering things, confused easily, and things being done to them. They now feel like children and they are upset, mad, and feel very defeated. They dont know how to verbalize it, so it comes out as I'll kill myself, life itsnt worth living, I'm giving up. I'm now scared of the once friendly caretaker who is now mean, bc she stopped me from trying to get out of bed, telling me I will take a shower/change clothes and it is going to happen! Now there is lots of anger and defiance. That will lead to more arguments. The person feels defeated when they know they cant win, and the next activity will take place. Or going to ER when they don't want to. Powerless to get their point across, verbalize properly, or stop what is happening.

It is time to talk to doc about anxiety and depression medicines. These will help her thru the rough patch. Some people need help with these transitions, new activities, and the resentment, anger, depression.

Imagine if you were in their place. Living alone doing what you wanted to do, when you wanted. Doing it for decades. Didn't feel like changing your clothes for days, or taking a shower; no one to tell you to do it. Now you have some person/caregiver telling you you can't leave the house, have to take a shower and change your clothes, NOW. If you dont they will remove your clothes. You will go to bed and turn tv off. You would be combative, angry, resentful, scared because the other person is like a warden now. It is a scary realization! Some transition well and feel loved and cared for. Fiercely independents resent they lost their independence. They feel the need to fight.

My dad didn't like 1 caregiver in nursing home. He never complained b4. At first I thought it was just talk, or caregiver made him do something he didn't want to do.
One day she walked in and picked up his hamburger and shoved it right next to his mouth and said you must eat. I was shocked. She was very young and I don't think she understood you don't shove food at people's faces like that. You coax them. She wasnt doing it to be mean. I think she was very young and clueless. I understood why dad didn't like her. He never had a reaction like that to anyone else. So there was something to it. She was let go from facility. A camera will let you monitor what's going on.

Good luck to you. If she can stay in her home that would be better. But sometimes there is a point where that has to change bc of level of care. Some who are independent have a harder time transitioning to a nursing home where things are so different. The meds will definatly help the transitions become easier with less anxiety. Nothing wrong with needing help.
Just remember you are helping bc you love her. There will be bumps in the road, and changes no matter what.
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You have to think about what is best for you as well as your mom and your mental health. Having managed a staff of 12 caregivers while my parents lived at home vs. now having them at memory care has taken such a burden off of me and I can spend more time visiting and enjoying my parents and being their as their daughter. Do your research on the memory care facilities in your area and spend some time visiting there without your mom and observe the staff and residents. I find where my parents are at the staff are so loving and patient with the residents.
Ys it was a big adjustment getting used to seeing them in memory care. My parents participate in the many daily activities they have. Prior to the dementia and Parkinsons setting in my mom always told us kids she never wanted to move out of their house. Well things change and we needed to have my parents be where they were safe and well cared for. I have not regretted one bit this move. I don't think there are any seniors out there that say they want to go live at a nursing home or memory care. I feel us as the grown children need to make these decisions for our loved ones to keep them safe and for us to keep our sanity. Visit your loved one in the facility where they are at and see all the love there is and it might just change people's mind about these places. There are great memory care facilities out there.
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I’ve seen this with my own mother and my MIL, and dementia comes in many varieties. Both needed anti anxiety medication. My sweet MIL thought the man upstairs, in her retirement home, wanted to kill her. No one lived upstairs though! She thought things were being stolen, but then we’d find them in unusual places. She’d unplug all the lights and appliances, because “Someone told her to”!
Hospice came to help my mom. They are saints! They also understand the signs of dying. The confusion, agitation/restlessness, both physical and mental. The lack of appetite because of lack of activity. Food doesn’t taste good and their body is having more trouble even processing it which can cause discomfort.
Please understand your mother needs much more to help as she begins the dying process peacefully, relaxed and comfortable.
Explain all that she is doing and saying to her Dr. He or she can get a better understanding of what she needs.
When we try to convince them to eat, exercise, be more active, we can be contributing to their discomfort by prolonging their death because it makes US feel better. But in fact, we are not allowing them to die peacefully and with dignity.
God bless you and give you the guidance and comfort you need.
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Let's just go back a bit, if we may?

Your mother accidentally pressed her MedicAlert button. This summoned an ambulance. Your mother's speech being impaired because of her dementia, the EMT's mistook the symptom for signs of a stroke and took her to hospital.

But who was with your mother when this happened? Whose account of events are you relying on?

Since then, you have noticed a marked deterioration in your mother's condition. But it seems, if I understand you, that you are attributing the deterioration at least in part to the needless upset of the hospital admission. I'm not sure that's right. It is quite possible that what your mother now remembers as having been an accidental call was at the time not accidental but perfectly justified, and she was indeed having some kind of brain event. This would fit with dementia patterns and would explain the deterioration better. Remember that the kind of continual attacks on the brain involved in vascular dementia, especially, are not easy to trace after the event.

A loss of mental function and her emotional upset would also explain her reactions to this one individual. It certainly does sound as if better training in managing agitated dementia patients is required, because grabbing elderly people in general, and frightened demented elderly people in particular, is just not how it's done, not even to prevent them leaving the house - it sounds like a lack of relevant experience and expertise. But quite honestly, having made the point to the caregiver, you've got more important things to be worrying about.

I don't know quite how to put this kindly...

Your mother is 97, and in spite of very substantial caregiving support she is now agitated and frightened and showing signs of getting worse. You are afraid to move her to a more secure setting in case it robs her of hope and leads to her giving up, if I can put it like that.

But realistically, how long do you expect her to live if she continues as she is?

If I were you, I think I would ask for an up to date evaluation from a geriatrician or geriatric psychiatrist, preferably one who knows her well. You are looking for an explanation of the changes you've noticed recently, a revised prognosis, and guidance as to the best care options from here.
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lucyinthesky Aug 2018
As tough as it all is....there comes a point when there are no real solutions to most of the daily issues our LO face....the questions for me looms...is this now quantity over quality?

Well said CM....
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My MIL blossomed in the NH and would probably do well in Assisted Living or Memory Care where she is on a good schedule and she needs to exercise instead of sitting in her chair and not doing anything all day.

I guess your mom could be evaluated for depression and dementia?
I would also think about finding another caregiver for her like others said. It probably isn't that easy, but it is a choice?
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I don't understand why you wouldn't just replace that caregiver.
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How about placing a camcorder in her room?
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We “gave” my mom 6 months when she entered the very good NH 5 minutes away from me.
She lived there almost 5 1/2 of the best years she’d had in two decades.
Now, dealing with similar issues with her youngest sibling, we have learned the value of an evaluation by a sympathetic geriatric psychiatrist.
Sibling is in the new assisted living unit associated with the NH Mom was in, has appropriate medication and is comfortable, safe and relatively peaceful.
Reporting of incidents ther, and there have been a couple, is immediate, detailed, and transparent, and Sibling has always concurred to the best of her ability with what’s been reported.
Life as a caregiver is always making the best choice from a number of less than perfect choices. Be sure to include your own level of comfort in whatever you decide.
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Founded or not if your Mom will not eat for this person, will not stay in the house when she is there, will not take medications for this caregiver...what good is the caregiver?
Obviously there is a problem. It might be a personality conflict. It might be that this person reminds your Mom of someone she does not like. It could be that your Mom does not like the perfume she wears. Whatever it is your Mom is uncomfortable with this person. If you get your caregivers through an agency ask for a replacement. You could just say that your Mom is not cooperating with this person and to make sure she is eating and taking her medications you need to have someone else. This is not an unreasonable request and anyone working with Dementia patients/clients will not take this personally.
As far as bruises...as a person ages the skin becomes very thin and bruising can happen without even realizing what happened. My Husband would get bruises and for the life of me I could not figure out where they came from. It could have been a bump on the way into the bathroom, putting him at the table I would often bump his leg on the edge of the table, I swear the hard water in the shower sometimes gave him a bruise. (kidding on that one). This is not to say that you should ignore bruises or other signs of possible abuse. I am saying that use caution and keep an eye open for other indications. There are other ways to prevent a person from running (how fast can a 90+ run anyway?) out a door so grabbing is out of line.
To prevent Mom from "running" out the door can the doors be locked? A thumb lock on a deadbolt is safe inside and it would not be easy for your Mom to turn and open, at least it would slow her down (that speedster) so someone could get to the door to redirect her or to walk out with her safely.
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Barb’s right. Decades ago, people believed you went to the hospital to die. Probably because by the time they actually did go to the hospital, they were so sick they did die, no fault of the care at the hospital.

My mom was in Memory Care for about a year. She was 95 when she passed and more than ready to be in the Memory Care section of her NH. It’s a smaller unit. Mom had 2 aides. There was an RN and an LPN on duty at all times. It was the best decision I ever made after deciding to place her.

As for the caregiver, did she mention the bruise before you noticed it or did she only admit to it when you saw it? I’d be vigilant but I wouldn’t call APS yet.
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I'm not sure why you think that mom wouldn't "last" in memory care. It's usually an unfounded assumption.

I found my mother's anxiety and agitation to be well controlled with meds presbibed by a geriatric psychiatrist. No matter where you end up housing your mother, a geri psych would be a good addition to her care team.
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