Anyone else feel obsessed with knowing how much time their loved one has left?

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Anyone else feel obsessed with knowing how much time their loved one has left?

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During Covid 19 I don’t get to see my mother much. She has been in lockdown since March. We have just started outdoor visits this last month. When I don’t see mom my mind always goes to the worst and I feel obsessed with knowing how much time she has left. When I get to see her my anxiety will will subside for a couple of days and then I get a call from assisted living that she has had another fall and it starts all over. My mom has late stage dementia, is very frail, practically bed bound, sleeps all day and is now having hallucinations. Sometimes I think dying is the only way for her to have peace. I feel like I am in a constant state of grief. Any input would be helpful.

Anxiety Coronavirus End of Life Grief

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((((((((hugs)))))))))). This is such an incredibly painful part of our parents' journey.

Does your mom have an advanced directive? Is she on hospice?

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It became clear with my dad that he would only be at peace by dying. Yet I knew I’d never reach a place of feeling ready for him to go, I’d already been through losing my mom and knew though it was for the best with her also, I didn’t feel ready to not have her here any longer. It’s an odd place to be, knowing your parent is miserable and not wanting that life for them, yet not feeling ready to say goodbye. A friend told me that we don’t grieve for the person we lose, we only grieve for ourselves, for what we’ve lost. That’s proven very true. I wish both you and your mother peace

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Dear "Scorris,"

With COVID to deal with and not getting to see your mother much since the lockdown in March, it would be easy to become obsessed with wondering how much time your mother has left - it's a fear of the unknown along with the uncertainty of this new virus and the course it will continue to take. Just like your mom, my mom who is 95 and is in the moderate - advanced stage of Alzheimer's related dementia, she too is frail and mostly bed bound but, that's because in April she nearly died of severe dehydration and COVID. She was completely mobile (I did get her a walker after Thanksgiving just to get her used to using one) and able to dress herself. Not anymore. We moved her to a new facility and into their memory care wing along with hospice being involved. My mom has been falling more than ever and actually yesterday, was the first time I witnessed her fall while I was outside her window. She decided she wasn't going to wait for the caregiver to come in and open the blind, she did it herself even though I was telling her through the window not to. Sure enough after she let go of the cord, she lost her balance and fell backwards on the floor. I automatically let out a scream and felt helpless not being able to get inside to help her. So I know how you feel when it comes to anxiety every time your mom's facility calls to tell you she fell again. My mom has had many more falls since being in her new condition which really isn't getting much better. There have been several times, even going back to Mother's Day when I thought "this is the end." I even had called the mortuary and they sent me the paperwork to fill out and I also called the cemetery where she already has a plot where my dad was buried in 2004. You are most likely experiencing what they call "anticipatory grief" - I know I have, which is accompanied by crying and despair. My mom used to sleep most of the day at her previous facility. Now, with hospice involved they took her off all medications except a high dose of Tylenol because she has pain from arthritis and they aren't always able to verbalize how much pain they may be in. However, the hospice doctor recommended a very low dose of something that is used for people with depression/anxiety/poor sleep. She is doing much better now that she can sleep all the way through the night and I think there has only been one time when I went to visit her in the late afternoon, that the caregiver had to wake her up but, she became alert pretty quickly.

I'm not sure what type of dementia your mom has in regards to her now having hallucinations. I have not seen my mom deal with that issue.

I think when we can come to terms that there is no way we can control or foresee when "that moment" will come, then and only then will we be able to experience some peace of our own. I wish you and your mother well!

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I can relate so much to your post. I can’t imagine watching your mom fall from the other side of the window. That’s just the point I feel like I have lost any control over helping my mom. She had another fall last night. That makes 25. I wish you all the best during this difficult time. Hugs to you

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Scorris, falling in line right behind you! Honestly, I have had these exact thoughts myself so many times and it's a comfort to know someone else does too. I often wonder how much time my grandmother has left, which is why every night at bedtime I tell her how much I love her and how wonderful she has been to me, how grateful I am for her, etc. I has been painful for me emotionally to watch my grandparents decline like this. Sometimes I too think that dying would be better than suffering like this.

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Thank you to everyone for your answers. My mom has vascular dementia and I too am not ready for her to go. She has fallen 24 times in assisted living and I have been thinking about hospice. My mom is my best friend and not being able to see her every day just kills me. The thought of her leaving me scares me. I’m not sure if I’m strong enough. Maybe all the grieving I am doing now will ease things. She is such a strong woman. If I can be half as strong I’m sure I’ll be fine. My moms 84 birthday is coming in a week and we are only allowed 2 visitors for 45 minutes. My heart goes out to everyone on this site.

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Oh sweetheart I do understand you, so much.
I do feel in a very similar way. It's so difficult to even wrap my mind around the idea one day my mom won't be here. The only thing that makes me feel better is to know that I've done my very best for her, every day.
I don't know how, but find a way to be with her as much as you can. If this makes you feel better, do it, even if it means changing her place. With lots of empathy, you are not alone in this.

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I think that maybe you're more ready for your mom to pass then you think you are.

Have you thought about getting some therapy since you're feeling this so strongly?

This COVID situation is beyond your control so try your best to accept it and don't be too hard on yourself.

Grieving as your mom is in late stage dementia is perfectly normal. You're losing her bit by bit and it's a loss at all the stages.

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Before the plague hit, I worked as a receptionist in a Memory Care home. One Sunday, the Catholic Deacon came in to hand out communion to those residents who wanted it, and he & I got to talking. Both of our mothers reside in Memory Care, both with dementia, and both in their 90s. The Deacon told me something profound: he said he prays every single day for his mother to die. Because then, she will be with God and OUT of the constant misery she's in, suffering with falls, dementia, incontinence, and a wide variety of other uncomfortable ailments. When she does pass, he is planning to rejoice and have a celebration because her suffering will be over with.

It is WE who go to all lengths to keep our loved ones alive, even after they're suffering reaches unbearable levels. It is WE who grieve the thought of them leaving us and forget the truth that their lives afterward will be far better than they are now. If you are a believer in God, then take solace in the fact that your mother will stop suffering once she does transition, and that she will be whole once again. Of course, your grief will be justified as nobody wants to say goodbye to a loved one.

I do believe you ARE grieving now for the mother you've already lost to the ravages of late stage dementia, which is a horrible affliction to witness and to suffer from. I recommend you read any of the wonderful books by Elisabeth Kubler-Ross you can find here:

https://www.google.com/search?rlz=1C1CHBD_enUS896US896&sxsrf=ALeKk00Bq9DHsyydw_98K2BGYiuFX5YTFQ%3A1596400632537&ei=-CMnX66qIInPtQbwu7TAAw&q=kubler+ross+books&oq=kubler+ross+&gs_lcp=CgZwc3ktYWIQARgEMgcIABCxAxBDMgIIADICCAAyAggAMgIIADICCAAyAggAMgIIADICCAAyAggAOgQIIxAnOgUIABCxAzoICAAQsQMQgwE6BAgAEAo6CwguEMcBEKMCEJECOgoIABCxAxAKEJECOgsILhCxAxDHARCjAjoICC4QsQMQgwE6BQguELEDOgcILhBDEJMCOgcILhCxAxBDOgQILhBDOggILhDHARCvAToECAAQQzoCCC46CgguELEDEEMQkwJQqA1YuCpgwDxoAHAAeACAAdoBiAGIDpIBBjAuMTIuMZgBAKABAaoBB2d3cy13aXrAAQE&sclient=psy-ab

Pick one that interests you, as they're all good, informative and comforting.

Sending you a big hug & prayer for peace as you face this difficult phase in the journey of life.

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Oh, I did. And had so many fears around it. 2 years ago I had not seen my bro for about 3 years. He was living in the middle of the desert sans airplanes. Moved back to civilization and I went to visit, we was then about 81, and I was shocked. He was so fragile and had lost weight, was so bad on his feet. When I came home I told my partner "I have spent years afraid my bro would die; now I am almost afraid he will NOT". Only about 3 months later he had a bad car accident and was diagnosed with a probable early Lewy's Dementia and a brain tumor on the medulla, either of which or both destroying his balance. So methodical and organized and independent was he that I dreaded everything to come. He put me in charge as POA and of his Trust. Moved to AL. And we visited about it all, about his diagnosis, the future, and etc. We were both worried he would have to go into that "good night" longer than he wanted. I was very afraid for him. He was afraid for himself; for what would happen if I died and he was alone--who would handle things. We had been Hansel and Greta through the forests of our lives ALL of our lives. When he died this last May of something unrelated my best friend was taken from me; one I had had since birth. But I will tell you the honest truth: Much as I miss him every day I am no longer afraid for him. And he no longer has to suffer or be afraid. I carry him with me, I write him in a journal and decorate it, I long to share all we shared. But I am no longer afraid for him. That, quite honestly, means the world to me. I am so sorry for the uncertainty and fear for you, and I know how that feels.

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Thank you for your post and I’m so sorry for your loss. I too have a journal. I write down everything that goes on with Mom everyday as I can’t be there with her. I write about the things that go on in her new world. It seems to help me with the sadness. I also have another journal which I write all the memories we shared in the past when we did everything together. I miss my best friend too. Hugs to you xox

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Scorris, I’m sorry for your situation and how you feel. However, please try to avoid making it worse for yourself. “Not being able to see her every day just kills me. The thought of her leaving me scares me. I’m not sure if I’m strong enough.” This is a long way over the top for something you cannot control and have to survive, and repeating it to yourself is not in anyone’s interests. Whether or not you are “ready for her to go” makes no difference at all.

Knowing that death is coming, but not knowing when, often turns life on its head. Taking time from work, leaving family behind somewhere else, and many other practical issues, are all very hard to handle, and the grief that goes along with it makes everything worse. Doing it well takes a lot of self control.

Please care for and about both your mother, yourself and others who depend on you. Lots of love in a difficult time, Margaret

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Thank you Margaret. I hear what you are saying and you are absolutely right. I am strong enough for this and I will make Mom proud.

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Scorris, I think your anxiety about your mother has been made much worse by the COVID 19 crisis. We have all been thrust into an unprecedented situation. Even those with no such worries about elderly parents are finding themselves uncertain and anxious about what the future holds. As others have said, you are probably also feeling anticipatory grief, which can be a normal but upsetting response to seeing your mother at this stage in her life. Try to accept how you feel for now - it’s good that you’ve recognised this anxiety and have spoken out about it. When the anxiety kicks in, it can be useful to take yourself to a quite place in your home and do some mindfulness and breathing exercises, which you should be able to find online. I found these useful for the acute anxiety I felt when my father was dying, and again at the start of COVID 19 lockdown when I felt we were in a living nightmare. It helped me find some peace at some point each day, which is what you need right now in order to look after your own health.

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Thank you Chriscat83 for your response. I have been reading on this site for a while now. I wait for my husband to go to bed and then really feel my emotions. I just started posting. I am a rookie to this stuff but I find it very helpful and informative. Sometimes I will sit on my balcony for a bit and then finally I will fall asleep on the couch to meditation. Which you are right is very helpful.

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I’m glad you’re finding this site helpful and supportive. It’s always better for you to realise you’re not alone in what you’re feeling and experiencing. A year ago I started getting help for the acute anxiety I felt, along with other issues after my father died, and then I found this site. Without acknowledging and understanding the feelings I had, I wouldn’t have been able to learn how to cope with them. Since earlier this year when I started to post on this site, I’ve realised how much I’ve already learned and can hopefully share with others to help them going through similar problems and crises. I never really thought of myself as a compassionate person before, but have been surprised at what I now know and how I’ve used it to help others - and that has also been a form of therapy for me. There are many people like me on this forum - with various histories but with a common desire to help others. Do stay with us, and you will find that the support is always there.

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I too am new to this site and have learned so much. It is a comfort to me knowing others are going through the same situations. I am thankful.

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Yes - I do as well. For so many reasons I just want my mother to have a peaceful passing. She has no quality of life, she’s in physical pain all the time, she has dementia that is worsening, she’s has hallucinations that scare her, she has lost the ability to do anything she loves or even get herself to the bathroom. She lives in an ALF and visitors are not allowed. I recently put her on hospice due to major decline. When they call and say “no change” I feel disappointed. And one of my biggest fears is that she will run out of money and need to be placed in a Medicaid facility - beds are few and far between. My therapist keeps telling me that my thoughts of wanting this to end soon are normal. My anxiety is going through the roof! Just know you are not alone in feeling this way.

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Oh my, I could have written this post! Mom has been quickly deteriorating since the lockdown. At first we had window visits and talked on the phone. Now she sleeps most of the day and only wakes up briefly to smile and wave. I don’t think she recognized pa any of us anymore.

Her NH has been COVID free until last week when residents and staff started testing positive. So now every time I get a call from the NH I expect to be told she has the virus.

I have been halfway hoping she does get sick so, it can all be over with! Such a terrible way to live, her elder sister did the same thing, years of just existing without a life. I feel so guilty about these thoughts but I know Mom didn’t/wouldn’t want to live like this. I know I don’t.

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We know that aging ends in death. However, our seniors are very much alive. Focus on "life" and how to maintain a good quality of life for yourself and your loved one. COVID makes it hard to visit in person, so we have to be a lot more creative in creating connection. I like the idea of "window visits' which are really low tech. My hubby likes the idea of virtual visits and phone calls. We have to do the latter with his mom who lives in Hawaii while we live on the mainland. I try to send my MIL long letters, photos with captions, occasional treats. I prod my hubby to call his mom, preferably weekly. Though she never writes back and her phone conversations are always the same, her caregivers say she appreciates the efforts.

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Only God knows when anyone's last day is going to be. My father just passed in June. We were told he may have had months and in less than a week he was gone. Pray for your mom to have peace and an end to her suffering. Can hospice attend to her while she is in NH? Try to focus on the present and one day at a time. That is all we have. I am self isolating due to being a caregiver for my elderly mom and aunt. Some of my children went on a vacation so now I am forced to quarantine from them for fear of passing something to the old ones. It is a very difficult time for all of us.

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Scorris: I see that the journaling has helped you and suggest that you continue with it, God bless you. Prayers and virtual hugs.

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I obsessed over every last moment. And now they have died, both within a short time, I would do anything for one more second. I now know how long forever is. I can only suggest you be in that moment. X

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Anyone else feel obsessed with knowing how much time their loved one has left?

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