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Crit1221 Asked October 2020

How do I handle the challenge of my grandmother not transitioning to assisted living well?

My sister and I made the hard decision to move our 92 year old grandmother with dementia into assisted living at the end of August (My sister and I are her only living relatives).


It has only been 2 months and I know adjusting and transitioning can take up to a year, if she ever does. Since she has been there, she has had maybe two really good weeks, meaning when she called us the conversations were upbeat and positive. She is participating in activities and socializing.


Of course, she does not remember any of this, we hear about it from the staff and photos that are posted on their social media pages.


For the past few weeks, beginning at 3:30pm - 7:00pm, every night, she calls me and my sister, crying and extremely upset. She wants to know what is going on, she doesn't know where she is, this is the first time she learned about being there, why is she there, etc. Each time we speak with her; we say we understand it's scary and confusing, but they keep you safe. We tell her that she lives there, and that they make sure she has everything she needs. She doesn't need to worry about anything. We take care of it all for her. Of course, because of the dementia, she doesn't remember any of these conversations. She calls back within a few minutes with the same questions. I've tracked it to be the same time, and when she is alone in her apartment.


At first we picked up what calls we could, but we both work full time. After a few weeks of this daily routine, I find myself loosing my patience, saying things that I know I shouldn't, like "We have had this conversation no less than 10 times today, you do not have to worry about anything. You live in your apartment and you are safe." I know she doesn't know she's calling that many times. She doesn't remember speaking with me. And immediately after I say it, I feel bad, and then she feels bad. I am now at the point I pick up 2-3 of the calls and talk to her and that is it, the rest go to voicemail (which she fill up my voicemail box every night).


She has a doctors appointment coming up that I'm hope they can provide some relief for her, because I hate the thought of her spending all those hours every night, crying and shaking and so upset.


I realize that there may be nothing that can help her, so I need to know what I can do to change how I react to these calls or handle the calls? Each call is so exhaustive and draining, any guidance or suggestions would be so appreciated.


Thank you in advance.

Crit1221 Oct 2020
A brief update.....my grandmother's doctor put her on a low dose anti-anxiety medication. I also requested the AL staff update the white board we put in her apartment by her phone. In addition to our phone numbers, the white board has answers to the questions that she asks when she is upset. "This is your apartment, you live here, someone will be here to see you soon, if you do not feel well, push the black button on your pendant." It's only been a week and it has made a world of difference. When she calls, she is calm, of course she is still confused and has a few questions, which will always be the case. But she isn't crying and upset when she calls. The calls have significantly dropped - from 10-12 every day down to 3 or 4. I'm sure there will be bad days, but this is a drastic improvement over what the past few months have been like.

Thank you everyone for your insight and guidance. It has been greatly appreciated. :-)

Countrymouse Oct 2020
Well, the facility sounds absolutely first rate. I'm not sure memory care could do much for her that isn't already being done.

Just thinking it through from her viewpoint: she comes back to her apartment with a member of staff, but once alone in her own space she doesn't recognise it and so she begins to feel lost and anxious (and perhaps ill with it).

Can anything be done to make her living space more recognisable to her? Does she have familiar objects and furnishings around her?

By the way - it will feel (slightly!) less exasperating if you fix it in your mind that she *can't* use her pendant, as opposed to won't use it. It is simply because, in the moment, the thought of using that pendant will never enter her head.

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mally1 Oct 2020
Since you weren't her actual caregivers, you had no way of knowing she is probably past AL and should have been placed in MC instead. Tell this to your sisiter; it was no ones fault, just happened.

Crit1221 Oct 2020
Thank you for the responses and input. She is on Olanzapine for the sundowning. She is with staff most of the day. I'm noticing the calls are around the time they bring her back to her apartment before dinner and before her evening medication. The aides take her for all the activities and to all her meals. They also sit with her in the common areas or she sits with other residents.

She is a strong willed German and does not show when she is upset. My sister and I are the only ones that she allows to see/hear it. One evening a PT came in for her session while she was on the phone with me. I spoke with the PT and she said she has never heard or seen her so upset....and she was visiting her frequently. So she can keep it together...not sure if that is a good thing or a bad thing.

She will not use the pendant to call when she is dizzy or has a headache. She calls my sister or I. We call the home and they go up with her and check on her and call us back with a report.

I am in frequent contact with the wellness director/head nurse. She provides me updates and is very forthcoming with feedback and experiences and with what we can do to help.

How do we know if she needs full time memory care...and what is the process? My sister will need convincing....it took a lot of convincing to have her agree to move her to a facility. In her defense, our mother (who was our grandmothers caregiver) passed away very unexpectedly and our grandmother is all we have left. Again I appreciate any input/feedback/guidance....thank you!

MJ1929 Oct 2020
She doesn't belong in AL, so no wonder she's scared.

Move her to a memory care facility ASAP. They know how to handle this type of behavior.

JoAnn29 Oct 2020
Yes, you have to make the Head nurse aware of this. It is sundowning as said. Actually, I would think they see the difference in her because its also dinner time. She is paying big bucks to live there. An aide should be helping her by reassuring her. Not staying with her but maybe taking her out to the common area. Call the facility when this happens. And yes, tell her doctor, there are meds.

BarbBrooklyn Oct 2020
This is called "sundowning" and there are neds that can help. Is the facility aware? They may have suggestions as well. It is extremely common.

If her doctor says "no meds, they will increase her fall risk", find a geriatric psychiatrist who will prescribe.

cwillie Oct 2020
This is an AL and not memory care? This sure sounds like sundowning to me, and unless this facility has given you assurances they can handle advancing dementia I question whether it is staffed sufficiently to handle this.

Countrymouse Oct 2020
What the heck are the staff doing while their resident is alone in her room feeling lost and afraid and calling for help???

Have you talked to them? What's the facility's daily schedule, and how often are they checking up on people?

You're doing the right thing by limiting how many times you pick up. You could go a step further and record an outgoing message specifically for her, such as "hi Grandma, this is Crit leaving a special message to help you remember. I call you every day at 7 pm, so I'll be speaking to you very soon. Love you lots, xxx"

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