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Dear Caregiver Forum friends,


I’ve been benefiting immensely from the advice and suggestions from this group since moving my mom closer to me, just over 5 years ago. She went from living in my home (with my husband and I) for a couple of months, to us buying a house 3 doors down so she could be more independent yet close-by so that I could care for her. A year and a half ago she had 2 falls (she bounced well so no broken bones!) and this led to us getting more help from a Homecare group. Then we moved her, unwillingly at first then resigned and cooperative, to an assisted living (AL) apartment just down the road. That was 10 months ago. With the Covid-19 restrictions imposed on her place over the last 8-9 weeks my worst fears came true and this accelerated her cognitive decline. A lot. She had a fall last week and within 3-4 days her mobility worsened, she was hallucinating and quite delirious. Between the nurses on staff and myself, we decided she needed to get to hospital for an assessment. For the first time in her life, she was argumentative and combative and paranoid, saying terrible things to me over the phone: ‘Don’t ever call me again’ and such things. I wasn’t too emotionally scarred because, from the excellent reading I’ve done about elderly behavior, I knew it wasn’t really her.


Her condition in the hospital was terrible for the first few days (this is what I know from nurses and doctors since Covid-19 prevents visitations unless there are dire circumstances): delirious, hallucinating, coma-like (unable to wake up when prodded), mumbling her conversation and difficult to understand, unable to walk or move extremities … etc etc. On her 4th day there, I was allowed to visit and saw all this for myself. One of the internal medical doctors told me that when she was admitted she was on 2 meds (don’t know name) that, she felt, made her delirium worse. These were given to her to calm her as she was so agitated and paranoid. She was off them by the time I saw her. My visit that day was surprisingly positive – she eventually woke up, recognized me, joked around with me, let me give her water and feed her a little dinner. She was still feeling the effects of the drugs though, I think, because by the time I left she was seeing things in the room that were not there. The next day I was also able to visit, a much less positive experience. She was much more aware and alert, and with this consciousness came the full force, I think, of where she was and how much pain she was in. She ate some dinner, no joking this time, lots of crying ‘I want to go home’ and ‘this isn’t fair’. She was very upset when relaying how they inserted a catheter. When I left they were giving her a mild dose of morphine to help with pain.


The last 2 days I haven’t been able to visit, and she hasn’t asked about me or for me. The nurses tell me she is more alert, a little confused still (but knows the year and where she is), they sat her in her chair in room, took her off her IV as she’s drinking and eating (not on her own though, still cannot feed herself well). The doctor in charge of mom is deciding on Thursday (one week after taking over her case) the next steps so I’m waiting for that conversation tomorrow. There will be some care decisions to make. I will, of course, try to see her again today as I do every day since her admittance to hospital.


I guess I don’t know what I am asking for in this long-winded story. I’m so used to taking care of my mom, being her go-to for just about everything. I’ve done this for so many years now and I’m used to our rhythm. I do it because I want to and because I love her. We have been buddies for a long time. Since her visitation restrictions at her AL home I’ve had to leave 100% of her care to other people and well, as you may guess, it hasn’t been easy. But this is much harder.


I don’t know what the next few days will bring but I’m reaching out to my wonderful community in this forum for comfort and strength. Thanks

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Hi Zuzu, I'm so glad this forum has helped you! I wish I had found it when we were stamping out the daily fires several years ago when we discovered both my in-laws were in rapid decline. I learned most things the hard way so I lurk on this forum so that others don't have to go through what I did (and still am).

I live in MN. My MIL is is LTC because of bad short-term memory loss and absolute refusal to get out bed. Over 80% of covid deaths in my state have been in nursing homes. She got the virus 20 days ago and she just qualified for hospice. Her NH has been doing as good a job as possible, given the severe staffing shortage due to their own covid sickness and mandatory 2-week quarantining. We have not touched my MIL in person since the middle of March. If she passes, we still cannot be with her. I'm struggling to wrap my mind around her possibly passing without us next to her, holding her hand, talking/singing to her... We attempted window visits but she's in a shared room and not by the window. Also they are venting the air out of her room so if we stand close enough to her window for her to see us (and amongst the bushes!) we stand directly in the vented covid air. My MIL is on oxygen, very weak, has bloody urine (she pulled out her cath that was there to check for a UTI), and her cognition is now terrible. Phone calls are difficult since the nurse must hold the phone to her ear and then we only get a 3-word conversation until she looses concentration pushes the phone away. The nurse has to then change her PPE any time we ask her to go in there. We are heartbroken and helpless. I'm truly happy that you can still be physically with your mom, even though it is fraught with her cognitive issues. My recommendation is that you visit her in person as much as possible since things can go south very quickly. If she gets the virus, you won't be allowed near her, no exceptions. I wish you peace in both of your hearts as you bring comfort to each other. (((hug)))
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Zdarov Jun 2020
geaton, this is so sad, I’m heartbroken for you. My mom had been out of reach at her MC, now in the hospital, where I can go but she’s always zonked out. But you’re right, I should go anyway.
I’m so sorry that cards have stacked against you like this. You have done so much for so long and this is so unfair. I do a lot of talking to Mom in my mind, and think and hope she’ll know. I was sending greeting cards a couple times a week and hoped the staff reads them to her.
Prayers for you and your family, and for her. 💐
(I always look at these responses oldest first, so I saw this. I think so many people use newest first.)
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In same boat as you. Had to place my dad in NH last night an hour away from us since no one closer is excepting new residents even though there are open beds. I am in Illinois, and the Covid is thick in our small town. It’s been downright torture on my dad who was in AL, he fell multiple times and each time he went to ER of course he came back to isolation, now at the NH, this will be his third isolation. I don’t know how much more our elderly can take of this. Placing him in NH is what he needed since assisted-living was no longer enough care but it’s still so hard especially when you can’t see them, it’s so heartbreaking and unfair.

And why won’t they test him for Covid after being in the hospital where there has been cases?? is it the norm they just stick them in isolation and assume they have it ??
My mom is going on her third isolation also after being in ER, and now returning from a behavioral unit back to nursing home, which will be her third isolation! This is what started the whole flip of downward spiral for her. She’s now on a cocktail of meds...

So yeah both of my parents, who are divorced, different facilities now, have definitely been affected mentally, it’s so sad. And not being able to comfort them physically in person is pure torture !!!
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Zuzu114 Jun 2020
Bella7, you are suffering a double-whammy! I'm am so sorry to hear of your struggles. Hugs to you my friend.
To comment on your question about testing ... I am a scientist working on various projects and I can assure you this: testing is only done if the person is exhibiting symptoms (and there are many as you know). If, after 14 days of isolation, the person has had no symptoms it is assumed they are Covid free. As thorough as the testing seems to be, it is not and usually gives false-negatives. Some tests only show positive if the person has had the virus "full blown" for a couple of days (and is quite sick from symptoms).
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Are you asking "will she be ok?" I don't know. But (((hugs))) to you Zuzu. For Bella & Geaton too. May we all support each other.

My Mum's just landed in hospital too. I can visit but after you make it past the renovations, the masked staff, screening desk, temp check & security. I feel like she's been hidden inside a labyrinth. But she's where she needs to be right now.
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Zuzu114 Jun 2020
Thanks Beatty! Labyrinth is right ... if only it were a protective cocoon where they came out the same way they were before Covid. It seems like the world is cleansing itself of minorities.
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So sorry..I have a very similar story...mom got badly confused at her retirement apartment when they all went into isolation...we sent her to hospital..4 days of spitting, yelling , paranoia and complete severe confusion. Stopped walking. They advised a transfer to a memory care assisted living unit. she had been having other mild mental changes before covid lockdown..Her MD had thought it was Lewy Body. She went into memory care..in a wheelchair..mad at me..8 weeks later she is walking alone again, regained Most of her lost weight but remains in Lewy Body dementia hallucinations..but she is well cared for, safe and relaxed. It really has turned out for the best...there was no way I could handle her alone. She packs up her studio apartment weekly. Needs 24/7 attention. I do blame Covid for pushing her disease to progress so quickly..but when we look back...the signs were already there..I might add I am getting counseling to help me handle this transition. It is so difficult..Mom is 86.
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Zuzu114 Jun 2020
My mom is 86 too. I looked up Lewy Body and the symptoms sound very similar to my mom's, less the shaking. Doctors did ask me if she'd been diagnosed with dementia (no) or Parkinsons (no) but, of course, she's had symptoms of cognitive decline for years.
The whole Covid lockdown with elderly care homes made sense at first, we all had to cooperate and isolate and we did. But ... to make our elderly parents understand this was and is impossible.
I wish you all the best in your recovery Sadinroanokeva, getting counselling will help. This forum helps too. Hugs to you.
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After 10 years of 24/7 care of my very difficult mother, she was placed in AL. (my husband and I were completely burned out, and her lashing out at us to the point that something HAD to be done). That was about 2 weeks before the covid 19 lock down of care facilities. Mom is profoundly deaf, and 98 yrs old. I think she would have adjusted pretty well by now if the covid had not hit. But with us not being able to visit, and her hearing problems, she has just put herself into more seclusion. She stays in her room, by herself, does not go to the dining room, and doesn't mix with the other residents----she says, because she can't talk to them. She was admitted to hospital three days ago, because of fluid retention, dehydration, and being physically weak because of not eating, drinking, or getting exercise. Now they are sending her to short term rehab. Then she is to be released back to the AL. Bringing her back to my house is not an option as my husband is 79 yrs old, I am 70, and we can't mentally or physically deal with her outburst. (that is not anything new, it's her narcissism.) But given all that, I feel so guilty, because I feel that I should be able to do SOMETHING to make things better for her. I mentioned bringing her back home, but my husband and children are against it------which I totally understand, considering how things were before she was admitted to AL. For a person her age Mom was in very good physical condition before going to AL. I have not been allowed to visit her in AL, or hospital. She feels like we have just dumped her. We have been going to her window at AL., and writing her notes and holding them up to window, but that hasn't helped much, if at all. It's so sad to hear about how these elderly are hurting in all this isolation from the pandemic. And even though life with my mother has never been easy------I love her, and it hurts so bad that she is having to endure this, especially, at the age she is. I know this is not an answer to your problem------but just know that you are not alone in your frustrations----we are a group of hurting people, who get support from knowing that we are not alone in our frustrations.
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Zuzu114 Jun 2020
My mother is exactly the same ... she was always a hermit. My father was the social butterfly so when he died, she just never cared to connect with any other people - just her own family. Stayed in her AL room, paid extra to have her 1 meal per day brought to her. And such nice people all around her!
I knew, on my last visit, that things would only worsen for her when her AL lockdown started. I knew she would decline mentally and physically she was already barely able to walk. I cried in her company that day, she looked at me like I'd lost my mind.
Thank you so much for your kindness and sending you all my best.
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My MIL was hospitalized with hip injury (needed surgery). She was 100. My husband was not allowed to visit. With her dementia, she became combative and did not understand what was going on, Took her IV's out and would not eat or take her meds. She was so confused, did not understand why she was there. My husband spoke on the phone but there was no reasoning with her. She died a couple days later in Hospice Care. We believe she died indirectly because of the Covid-19. My husband believes, had he been allowed to be with her and help her through the whole situation, she would be alive now. He will never know. She was transferred to Hospice and he was allowed spent 5 hours with her. Spoke to her, told her he loved her (she answered back, I love you too), was able to give water on a sponge stick. She did have the hip surgery while in the hospital, so she was in a lot of pain and was retaining water. Morfine was given and she was out of it. The next day she died, heart rate went down and she was gone. I believe that it was God who took her, she was suffering and confused.
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Beatty Jun 2020
Fractured hip for the 'super' aged (95+) is a death sentence. Some have surgery, some direct to hospice care instead. After surgery, with the best medical care, many survive only days, weeks, or months. There are exceptions of course. But the fracture, surgery, being in hospital, medications are just little facts at the end. It was her time to go. May you both find peace with that.
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I haven't seen my mom since the end of February. As luck would have it, I myself had the flu and didn't dare go near my mother while I was sick. Just as I got better, the quarantines happened. I'm in Maryland, and I will be lucky to see her before August. She's also dying. Hospice told me two months ago she only had a few months. I have no words of wisdom but to say there are many, many of us in your situation and you are not alone. We can only do what is possible to do and forgive ourselves for the rest.
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Zuzu114 Jun 2020
Thanks for being with me, it's comforting to know I'm not alone. I pray for your mom and for you as well.
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I am in a very similar situation with my 86 year old mother. She fell and broke her arm and was in the hospital for a week. Was brought home to her AL apartment (the week before covid restrictions hit) and has been in a hospital bed, designated hospice ever since. AL just started letting me see her and her mental decline has been rapid and severe. It is heartbreaking. I pray she is being taken care of, she can no longer feed herself, walk, nothing. She just lies in her bed and stares at the ceiling. She is totally dependent on the hospice aides and AL nurses. I am so thankful for their efforts, but feelings of futility are getting me down. It is a sad way to end her pretty wonderful life. I wish, as her daughter I could do more. So I bring ice cream and feed her and pray she just doesn't realize the sadness of the situation. I wish you peace. So many of us are right here, with you and your Mom.
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Zuzu114 Jun 2020
I wish you peace as well Swc610. Thanks for being with me on this journey. Your kind words are comforting.
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Zuzu, there came a time with my mom where it was obvious that trips to the hospital were doing more harm than good. When that time happens, you need to bring up the idea of hospice or palliative care.

Being in a hospital is a disorienting experience for everybody, but to a frail elder with dementia, it seems to lead to a serious and rapid decline.

My thought are with you.
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Zuzu114 Jun 2020
Thank you BarbBrooklyn, I know your name well here on this forum and ... I appreciate you writing to me!
Yes, doctor and I discussed my visits just this morning. We both agree that mom takes a couple of steps back after my visits, so now I'm waiting to be called for if needed.
Mom is now on a mild anti-psychotic med to keep her moods level and calm and help lessen her agitation. I am fine with that ... anything to keep her comfortable and calm. Her family doctor is now on hospital rounds so mom is more honest with her about her pain levels and her feelings.
I am more depressed and feel like I'm in mourning ... I find it so difficult to not see her and comfort her. After all these years doing everything for her ... hard to walk away. Keeping things in perspective is hard, probably the most challenging thing I've ever done. I wasn't able to have children of my own so I suppose my mama became my baby.
Thanks again for your kind words.
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Our stories share so many parallels!! My mom had a stroke 3 years ago. I put her in assisted living complex which she really enjoyed. She fell 2x last fall & had multiple surgeries on her hip. So I moved her to a nursing home with more care. In March I was notified They closed facility to any visitors due to COVID. In late April she was diagnosed with the virus. She was in quarantine for 6 weeks, and during that time I only spoke to her 2-3 x a week. IF she felt like talking. Since she has been moved back to her room, and is better. My point I guess is that during all of this I am the ONLY sibling to even care about her and am her POA to make medical decisions for her. She’s been mean, rude, says terrible things in front of nurses and during all of this I’m hurt and going thru my own depression. It’s not an easy balancing act. If you have God in your life, pray... talk to Him, ask for strength and guidance on how to cope. You’re not alone even tho it feels like it.
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Zuzu114 Jun 2020
Thank you tinalc, yes I pray every night (always have). I very much appreciate your support and this forum has been a huge comfort to me. We all do need to stick together and help each other through the darkness.
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I’m in a similar situation. I’m an only child and my 97-yr-old mother was living comfortably in a small AL home near me. She was thriving until she had a low-grade fever and her MD insisted that she go to the hospital for COVID testing (which was negative, BTW). In the last 4 weeks, she’s been in and out of the hospital and rehab twice. She’s now back in rehab for 6-8 weeks while her broken elbow heals (yes...it happened in rehab). I feel like the wheels are coming off the wagon. Previously, I was dealing with one facility and a phenomenal staff. Now, I’m dealing with 3 facilities and endless staff members who barely give me the time of day. Each time she is moved, (even sometimes without my knowledge) I have to track down her belongings to make sure they stayed with her. It’s driving me nuts to not be able to get inside these facilities to check things out. You are definitely not alone. Wishing peace and comfort to all.
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Zuzu114 Jun 2020
"Wheels coming off the wagon" is a great analogy. After taking care of mom for over 5 years it's so difficult to give control to strangers.
Many thanks to you for your comments.
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Zuzu114: Prayer sent to you, dear lady.
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Zuzu114 Jun 2020
Thank you, many hugs to you.
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Mom’s MC went on lockdown 3/17, and talking to her on the phone or other modes has been challenging for sure. She fractured her hip the other day, when I go to the hospital she’s always passed out. They’re getting her out of there as soon as they can, I fought for her to stay a couple days past the required 3. It is a terrible sense of lack of control. I feel so much for you, and for everyone who’s replied, bless our elders. Hopefully their lack of awareness is a help at this point. Hugs to you all.
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Zuzu114 Jun 2020
Thank you for your kind words Zdarov! There are good sad days and terrible sad days, nothing in between. It's so comforting to hear from my sisters here on this forum.
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