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My sweet mother is living in an assisted living community/facility in CA. Prior to COVID, she lived in her own apt with minimal assistance. Her short-term recall was failing and she had mild dementia, but with a daily 1-2 hour visit from me or my sister, she was calm and happy, a sweetheart to all. Then March 14th, Mom’s AL facility closed off to only “essential workers”. My sis and I were limited to contact via phone only. And within days, Mom sunk down into the pit of dementia, completely unable to comprehend what was happening and why. Why am I in this “hotel”? When are you coming to take me “home”? Where are you? Why aren’t you coming to see me? Her calm demeanor is now replaced with anxiety and fear.
We have worked with her doctor and added an anti-depression med which also helps with insomnia. At the request of the facility, we have hired a personal care companion 6 hours a day, on top of the 24/7 support of care givers at the facility. We call 4 times a day when her care companion is not there. We FaceTime with the help of the care givers. We sing, read devotions, the Bible, and stories. We answer her questions several times each phone call. None of this has given her any understanding or lasting comfort.
Is anyone else experiencing this with their parent? Any suggestions on how to help from afar?

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I know what you are going thru and can sympathize. My mom , age 93, was in AL and just coping with multiple calls daily when she got pneumonia and was hospitalized for a week. Then she was moved to rehab where she has been for 3 weeks. It was a traumatizing experience for her with no family contact and really increased her dementia.

Her rehab is one story so I have been going over most days, weather permitting, to sit outside her window and chat on the phone. She brightens up and seems to be improving. We are hoping to get her back to her AL where she will be among familiar faces and her own things.

Mom has had a few panic episodes so the nurses call me and I can talk and reassure her. One said she went from a 10 to a 2 on the panic scale when she heard my voice. Her Dr ordered a light sedative when needed.

I also noted that each of the night time calls happened soon after I left her a small candy treat. Wonder if the sugar or chocolate was a trigger?

Hang in there, the quarantine orders are for the good of the larger community. So far no one are the AL or SNF has fallen ill so it seems to be working.
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Imho, you're doing a great job thus far! Sure the elder is definitely more inclined to panic when things changed - like during this time. Praying for you. :)
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I like the Answer of DeniMom
The only thing I thought about is there any old movies of family or maybe a nice picture or two from past that may help her. Dementia I know may not pay attention to having a pic....but maybe information with the picture can be read to her.
I do feel for your mother and pray for comfort. You are a wonderful family to do all the things you can do. It is because we all have to be apart that makes it hard.
I pray comfort will come to her....It will or won't....You just know that you are doing everything you can. I am sorry for this situation. Bless you for all you do for your mom.
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We did the facetime as well with mom. Facetime is new for me - but my brother convinced me in getting an Alexa device in her room (providing the facility has wifi). You can test it at home and make sure it works with your ipad or iphone. My mom gets confused with new technology (and also has dementia) - but with the Alexa - you would just drop in anytime via Facetime/Alexa and your mom would just have to talk - your mom does not need to push any buttons to answer or to disconnect. And you won't need the aid to help you out. I also have a camera in mom's room (Arlo) - this is a great piece of mind in checking to see if mom is doing ok and to make sure the aid/facility is doing their job. The Arlo camera also has a microphone on it and you can speak to her that way as well. Good luck.
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earlybird Apr 2020
DeniMom. Wow!! Great solution.
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My mother lives in a Memory Care ALF and having difficulties processing everything that's going on right now. She has good days, bad days, and terrible days, truthfully. Let the staff at her ALF know that she's struggling, and see what they can do to help her with activities, coping strategies, and see if they can set up a video call for you and she to interact. That's what we're doing with my mother today (DH & I) and I'm hopeful that it will make her feel better. We are reminding her daily that we'll be there just as SOON as the order is lifted, and that we love her and miss her. Fortunately, she has 22 other residents to mingle with and a lovely garden to sit out in (at the ALF), so in reality, nothing much has changed for her. They still get to do activities and eat (in 2 separate groups now), it's just wearing a mask that bothers her a lot. They've just instituted that policy which I think is ridiculous, personally. These elders with dementia don't get it..........and a mask causes more fear and anxiety than anything it may do to 'help', in my opinion. I'm hoping they ditch that idea SOON.

Anyway, just do what you're doing and remember that a bad day doesn't mean a bad life. While today may be horrendous, tomorrow may be perfectly fine. One day at a time, right? The added meds are a great idea; whatever works is what's required right now. Don't second guess it, and don't listen to naysayers, either.

Wishing you the best of luck and peace moving forward.
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An senior social worker helps to cope with this unprecedented, difficult COVID-19 situation. What is your mom's telephone service? There are services that use a zoom-like video to stay personally connected, very similar to actual physical presence. I had mentioned in previous messages that Consumer Cellular has the Grandpad device that is very easy to use.
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I can SO identify with you your post... My mom also has Alzheimer's and vascular dementia and has lived in a wonderful Assisted Living since I took her kicking and screaming last April. It has taken MONTHS for her to adapt. I was there so often and actually led a ladies Bible study there so my mother was used to me be around. She was so settled and had adjusted and FINALLY content. The first of March, she had a TIA and the next week a small stroke that affected her entire left side. She went from practically running down the halls to assistance in getting out of bed. Through therapy, she has now progressed from wheel chair to walker, but is still needing some assistance. Her speech has improved, but mentally, she has crashed! The stroke issue happened about the same time as the quarantine. They allowed me to slip and stay with her at the beginning of the morning of the 2nd stroke until the doctor got there because she was so scared and my presence gave her comfort.But after that... the best I can do is go out in the yard and thankfully, she has a balcony she can be taken to and I can see her but she cannot understand why I don't get to come in. Heart breaking!
Since she doesn't have a cell phone, I purchased a Facebook Portal that often she needs assistance with but it has been such a blessing that she can see us. We did the music, Bible study, prayers, etc and she told me yesterday that it was the best day... 20 min later she is calling me crying wanting to come home! It is SUCH an emotional battle for all of us.. I think the opportunity for them to actually see us is such a major plus.. Thankfully, the staff, nurses, and team where she is are some of the most wonderful people that have such a heart for their residents.. and they are constantly sending me pictures and encouragement of any "hall" activity they have and she participates in. I honestly think this has been one of the hardest situations I have been in so far with her to see her actually cry and beg me.. It tears my heart out. I am going to go back and watch more Teepa Snow videos but I think our PRAYERS are our biggest weapon against the isolation they feel..because God loves our parents more than we do and He can comfort them like no one else.
Let's all hang in there and realize ( trying to tell myself this) that my mother's misery is temporary and her happiness is temporary.. it is minute by minute and we can only do so much. Thanks for sharing... It somehow makes me feel not as alone.
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I have found that the videos by Teepa Snow are enormously helpful around how to talk to and react to my mom. She had a video on her website recently on exactly this subject. It might be here: https://teepasnow.com/services/online-learning/online-dementia-journal/march-2020/ .
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I am wondering why it is any safer for a Personal Care Companion
to visit your Mother than for you to visit? If she has not been tested
and is not a nurse then I would suggest you make yourself her
Personal Care Attendant. Good luck, I can only imagine the stress
and heartache all of you are going through at this time.
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EXHAUSTED13 Apr 2020
Hope you can see my post . As the shingles took a toll on my mom . I can’t get in to see her ! They won’t allow an outside agency to give her extra companionship . No one but employees are allowed in . If they could test family to go in this would be the best option . The elder are giving up when they were just so active a few weeks ago .
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have her live with you
the more you rely on psychotropics or narcotics, the greater the risk for falls. They already have balance issues without drugs.
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lealonnie1 Apr 2020
That is not the pat answer for everyone, as you well know! Not everyone is qualified or capable of taking an elder into their home & to provide 24/7 care for them. Just b/c you did it does not make it a doable thing for people who have been in ALFs or SNFs for years and have a multitude of issues going on. And there is NOTHING WRONG with giving an elder anti-depressants or medications to HELP them get through DIFFICULTIES they are experiencing right now.

To the OP, don't feel ONE iota of guilt over posts like this, okay? You're obviously doing your best for your mother and that's what counts.
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I feel your pain! I work in activities in an assisted facility. We are trying to help our residents cope with separation from family and a complete change from their routine. The dining room is closed, and the residents eat in their apartments. No guests, and the residents favorite place to congregate is closed. The residents who have dementia are the hardest hit. Change is very difficult, as you know.
We are making “Angel visits” constantly to help those who need help. I have been busy with FaceTime or ZOOM visits with family members. Once the family sees their loved ones they immediately light up and smile. This has been the best medicine, and I encourage your facility to arrange this with you and your family. We have dedicated a special number for the family members to contact us directly for these such requests.
UTI’s are also a problem with older persons with dementia. I am glad you are looking into this. As other comments have stated, this infection can create much confusion and make dementia worse.
I feel for all residents of nursing home/assisted living facilities. I hope visitors can come in soon!
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Respect2honor Apr 2020
What a wonderful and hopeful post. I am grateful for you and others, who care for those who cannot care for themselves. Kudos to you.

My mom is in a memory care facility and, as with patrish1pacbell's mother, my mother is (actually, she has been for months) experiencing depression; seems worse of late. It is certainly being addressed and I am regularly in contact with the staff and with my mom (via telephone calls).

Otherwise -- one thing for sure -- weather permitting, my mom and other residents are able to walk on the facility property where she lives; she also sits at the gazebo she loves. I know this definitely boosts her spirits. She looks forward to the opportunity to get outside.
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Another example where the cure is worse than the disease. I would make you or your sister the hired personal care companion the facility allows.
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EXHAUSTED13 Apr 2020
That is a wonderful idea . How can you do that if the community won’t let anyone but their in
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You are doing great! I live close enough that I can do window visits as my Mom is on a “reachable” floor with a step ladder. She loves my visits. FaceTiming with her just wasn’t working well as she needed the personal connection. God bless!
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I had a thought and don't know if it would be allowed or would work - would giving her a very special big stuffed animal help? I have known situations where that helped make wonders for the patient. Just a thought. And, check out any medical possibilities as well.
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This is a heartbreaking situation that is being played out over and over again. If she has dementia, nothing is going to make her understand. Keep calling and doing what you are doing - at least that should bring you some peace. There really is nothing on this earth that anyone can do - except God - and so far he has not chosen to stop this horror.
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Have they tested your mom for a UTI, that would be my first concern. Is the facility clear from covid, could you bring mom home? I feel for you, I wish I had an answer. My mom developed dementia while in a rehab facility for a broken femur 5 years ago. I contribute her decline to some of the medicines they gave her.

My dad and I were talking about this tonight. “Dad please be careful and don’t fall.” If you have to go to the hospital they won’t let me go with you. I have been fortunate that my dad 96 is of sound mind and in good health except for his knees. Because of this mom was able to stay in their home. If course it helps with me living across the street.
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patrish1pacbell Apr 2020
Thanks for your reply, Kaley. I’m so glad you’ve had these wonderful 95 years with your dad. You’re right about the UTI...it can contribute to confusion and testing is a good idea. Mom had a good day today...her care companion has a very gentle and calming affect. My call w Mom this evening was the comforting for both of us, best in over a month. Shud confusion increase again, we’ll get that UTI test. Thanks again for your suggestion. Be safe.
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Please check her for uti. I had the same problem with my father. Which is 95 and has dementia .
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patrish1pacbell Apr 2020
Good suggestion, thanks.
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You might also have them check that she doesn't also have a UTI. That behavior exactly mimics my mother's when she has one.
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patrish1pacbell Apr 2020
Good suggestion...great reminder
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If you mother is still a reader, I suggest writing a letter that answers her most often asked questions: where she is, why she's there, why you cannot physically visit right now, when you will call her next, who's that aid staying with her 6 hours a day, etc.

When my mother stayed with her sister while I traveled, I left such a letter with her. My aunt told me Mom would take the letter out several times a day and read it through and seemed comforted by it. Memory problems impede a senior's ability to adjust to new to them environments and increase disorientation. Imagine yourself waking up to in a room you do not recognize with strangers coming and going and unsure how to make contact with anyone you know and love. The letter is a memory "bridge" providing the information your mother needs to re-orient herself to her current environment and comfort her that you will be calling and checking on her sometime soon.
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KaleyBug Apr 2020
I love this idea, my mom can still read and comprehend, but has a hard time communicating. I may write her a letter I can show her daily. Saying my dad is there, just at his desk, why I come over, how much we love her etc. thank you for this idea
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Is there room for a camp bed in her apartment? The only thing I can suggest in addition to the tremendous effort you're already putting in is for a volunteer to move in and self-isolate with her for "the duration," as they used to put it in WW2.

You'd have to do some fast talking to negotiate it with the facility, mind. After all, what if everybody had the same idea?

There is also one thing to hold on to meanwhile. As long as she remains distressed by your absence, harrowing though it is to witness or think about, it must mean that she has not lost that connection. God willing you will be able to repair it.
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patrish1pacbell Apr 2020
thanks for your suggestion...interesting thot and I’ll keep it in mind. Mom is having a better week, it seems the kind attention of her care companion is significantly reducing her anxiety.
I really appreciate your comment that her missing me, although distressing, does mean she still has a connection. Thank you for that insight.
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Hi there and welcome to the forum.
I’m not sure I can add anything to what you are doing which is significant!
I do wonder why a family member couldn’t be considered a personal care companion as hard as that might be.
My husband and I have moved in with his aunt, 93 and with dementia, in order to allow her aide to stay home. So it’s not a fair comparison to your mom’s situation. She is normally home bound so her life really hasn’t changed that much.
My heart goes out to the occupants of these facilities and to the trauma they and their families are experiencing as a result of this virus. We know that most any change can progress dementia so I’m not surprised your mom has had some decline.
I’m worried my aunt will have a hard time adjusting when we go back home. Hopefully we will all get through this period together and these facilities will be offered safe practices and equipment that will allow well family members access soon. Tell the personal companion to send you some photos of mom wearing a smile or watching tv so you can see she’s ok most of the day. Take good care of yourself and stay in touch. Hugs to you and mom
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patrish1pacbell Apr 2020
Thank you for your kind comments. Your aunt is fortunate to have such a caring niece that you and your husband would move in during this time. You are right about the photos..,Mom’s care companion sent a few beautiful photos of mom when they walked through the garden. As of today, the companion is helping tremendously to ease mom’s anxiety. Today I still got the same questions but mom better accepted my answers.
I pray health for you and your aunt.
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