Everyone’s situation is different, and the choice you make could turn out to be great or it could be a disaster. I stayed in my mother’s home full time the week before she died of cancer. Morphine did not constipate her, her bowels moved about every four hours (complete with lumps of metastasis), and she needed to be cleaned up immediately, often the bed being remade (she was bed bound). I slept whenever she did, less than two hours, around the clock. Medicos called but didn’t provide care. About 24 hours before she died, a locum GP gave her enough morphine to stop the pain, but she also lost most consciousness. She died in the night during the short time when we were both asleep.
I was glad and proud of both her and myself in coping the way we did, and it was what she wanted. However I was totally exhausted, and I couldn’t have done it much longer, physically or even financially (I was self-employed). It certainly couldn’t have lasted for a month, let alone 6 months.
So what does that means for you? How long will this last? What help will you have? How strong are you, physically emotionally and financially? How much does it matter to you and to her?
Please ignore the ‘treasure every moment’ comments. I’m sure that people who feel that way had a very different experience, or no experience at all. Just do your best, based on how things are going.
It's hard to answer this, but I'll tell you my experience. After my mom's second hemorrhagic stroke she lost her ability to process what her eyes were seeing. It caused a great deal of confusion and anxiety. She was seeing things, but the part of her brain that processed visual images was damaged. Her stroked happened in May of 2019 and she was in a very decent care facility in Santa Monica. We thought it would be best for her to stay there to be surrounded by 24 hour care, consistent meals, other people her age (90), and activities. But by early Fall it was clear it was causing her more distress. I would visit her every morning and evening to feed her meals. She was in bed most of the time. The part that I found most difficult was that each staff person treated her differently and had a different process or way of explaining to use the restroom or shower time (which she didn't like). Plus each caretaker/nurse had several patients to tend to, I think 6 maybe?
Many times in the morning, after breakfast she would need to use the restroom and most often the nurse was with someone else doing all the necessary state requirements of feeding, changing bed, etc. So she would have to wait and would often end up having to use the toilet in her diaper which caused her distress. After several times of this, I would just get her out of bed myself and to the restroom. I watched what they did. I was fortunate in that I am a little younger at 51 which made the physical part easier.
By early Autumn, after several times of her telling me she was afraid to be alone there I started asking questions. One morning, one of the day nurses said I should listen to her, because it wasn't just her dementia talking and that she was more "with it" than people would give her credit. My mom complained that some staff were mean to her. After some thought, I just decided that her being there wasn't worth it. I brought her home and yes it was challenging, yes it was difficult, yes there were sleepless nights for me. But, it was also peace of mind that I knew exactly the level of care she was receiving, I knew when she was fearful or upset or happy. For 2 months she would wake at night and yell out. She was confused, especially at night, and didn't know where she was or how she got there. She would try to get out of bed, she would call out several times a night and I would go in to soothe her and tell her she was safe and she was in her own bed and her bedroom. Slowly she found peace and the nightly call out diminished to maybe one a week. It made me sad to think about the times at the care facility when I realized that staff would tell her to be quiet or worse "shut up" and to go back to sleep. They would stuff pillows on her sides so she couldn't turn or try to get out of bed. I'm glad I got her out of there.
I know my situation isn't for everyone, but after 6 months of caring for her she passed gently and softly one afternoon. She wasn't in distress and fortunately didn't need any pain medications. Having been with her intensely for months I knew her pace and her rhythm. I knew when she was comfortable, and when she was anxious. I knew the day she stopped eating, and then stopped drinking. I could tell she was getting closer to her next journey. I spent the last 3 days with her nearly non-stop, showered her, changed her, and held her hand. Told her constantly she was loved, brushed her hair. I was alone with her, holding her hand when she took her last breath. I like to think she chose me to be with her for her last few months. My other siblings were busy with their family and kids. But I knew I would only have this one opportunity to be there for her in this way. I'm glad I made the decision I did and I know that it isn't for everyone. But if you do have the choice, I say bring her home. I don't regret making that decision for one moment.
I was so happy to read that you brought her home and shared time and special moments with her before she passed. So far these last 2 days have been amazing with my mom. It has been difficult but we don’t regret the decision to bring her home. She has been responding a little and I think she feels our presence. I am so grateful for this time.
If she is officially been determined to be on her way out, would the facility not let you visit with her?
My understanding was that exceptions for visits were made for those actively dying/on hospice. If she is truly dying, they should allow you, with restrictions, to visit.
If she is not on death's door OR they won't allow visits, bringing her home is something you will have to decide for yourself. Talking to those who provide her care would be a place to start. In order to decide whether you can provide the care she currently gets, you need to know what that entails. If she needs specialized nursing care and you don't have the skills/expertise, then unless you can hire a nurse (NOT a CNA), bringing her home might be off the table.
Yes, the facility would let us see her only if hospice said she imminent. I just couldn’t wait, they said she had refused to get out of bed and wasn’t eating. It bothered me so much that I couldn’t see or be with her. I picked her up the next day. The plan has been to try to bring her home (5 hr drive to home) before she passed so she could pass at home with family then be laid to rest with my dad. With Covid I was worried about transferring her to her hometown after she passed.
I’m in a similar situation - my 85 year old mother is in a nursing home, has dementia, had trouble swallowing then developed aspiration pneumonia. She is not likely to survive this. I’ve spoken with the staff about what specifically their end of life care is. I would love to bring her home but this would be physically, mentally and emotionally exhausting and not something I could do. In my opinion, you’ve arranged the best care possible for your Mom, you’ve done your absolute best.
Have you asked the home to enact hospice services? They can provide additional care for your mom and the services are often covered under her MediCARE benefits. My deepest sympathy goes to you and your family. It's an especially heartbreaking time to lose someone in a care facility.
Shimcw, I do feel for you. I'm in a similar situation.Even though, I can be in the home to care for her 24/7, how long would it last? That's the issue. I couldn't go long periods without sleep, as I think I'd need to be up watching her throughout the night, in case she needed something.
Do you have anyone to help you with her care around the clock? I know how you feel about wanting to bring her home. I think my LO would be able to sense it, though, I may be imagining that. I wonder if she's waiting to get home, before she lets go. I know this must be so difficult. Please post with updates, if you can.
First, if your mother is in MC, is she still cognizant enough to appreciate being "home" with you instead of in the MC? If her mental status is such she cannot appreciate being home then I would probably leave her in MC.
Second, is she getting the end of life care she needs in the MC? If you know you can offer a better standard of care at home, then I would definitely consider bringing her home.
Third, providing her care will include both good and bad moments. Will you feel better after her death for having been with her during this time? Even considering the stress of providing care? I have found the emotional impact of my parent yelling at me with some form of disapproval or begging me to help them call/visit a dead relative much more difficult than any physical care. It's not easy to see a parent in pain or unable to eat or drink either. Be honest with yourself about your ability to handle these things 24/7.
If your mother can appreciate being home and you can handle her care at home even with social distancing considerations, then I would probably bring her home so I spend those final days and hours with her.
Take take her home be with her spend every moment with her that you can my mom passed last Sunday she was in a nursing home I couldn't see her they were on lockdown I can be with her but you could spending time you can with her let her know that you're with her and that she's not going to be alone
Oh, I am so sorry. This pandemic has been horrible on our loved ones in nursing homes. I was so afraid of this. We brought her home. It hasn’t been easy but we are glad we did.
You should discuss this with Hospice. IF this is possible you can ask Hospice to arrange the transfer to your home. BUT only if she tests negative for COVID19. Another option would be to have her transferred to the Hospice In Patient Unit again only if she tests negative for COVID19. You do not want to put yourself, the rest of the family or any of the Hospice staff at risk if she tests positive.
Ceecee65 is absolutely correct. We all want to be with our dying loved ones but unless you can provide the care needed in between - it won’t do you any good and your mum might not get help, pain relief treatment as promptly, unless IV dosage.
If you can be available night and day for her and want to, then by all means try; I do not know what rules may apply to removing a person from hospice during lockdown or even if they allow it.
So sorry you are dealing with this during this pandemic. We lost my partners dad in February, got told he had aggressive leukaemia the eve before we moved. Literally threw boxes in new place and went to see him. He lasted just 20 days and of course very few could attend the funeral.
Whatever you decide, be kind to yourself during this rough time. Regards,
This is very individual for each person. There are many factors to consider. I’ll relate that with my mother we knew for about three weeks that she was dying. She was in nursing home care and the signs were that she stopped being able to accept food, stopped communicating with us, and spent her time sleeping, a deeper sleep than usual. It was clear that predicting when she’d actually pass away was impossible. Though we tried to be there a lot, in the end she was alone. As sad as that sounds, I’m at peace with it as she was already sleeping and she only drifted away to the end. There isn’t always a time for a interactive goodbye. We each knew how we felt and the love we shared. Her death was far more peaceful for her than the life she’d been living in a body that was so broken. I’m truly sorry you’re going through this. You have to decide what will be most peaceful, both for you and for your mom, considering the comfort of the familiar and the possible upset of moving. Only you know the complexities of where you are. I wish you peace and comfort through it all
I'm sorry for your loss. If it is any comfort, our family was able to sit vigil with our Dad and yet he passed away during a very brief period when he had been left alone. (less than a half hour!) So, in the end, he was alone when he passed away.
We were told it was very common for people to "leave" when their loved ones were not there. The nurse said they suspect it might be easier for them to let go when you aren't in the room.
Hi, I am here with my sister at her home taking care of her. It looked like she would pass soon. Hospice is now involved which has been amazing. I feel we made the best decision to bring her home. We have had quality time with her. We didn’t want her to pass in MC or a hospital. Bringing her to my sister’s was a difficult but good decision. My only dilemma now is that I need to return to work next week and I have no idea when she will pass. It isn’t so difficult with my sister and I caring for her but I worry about my sister once I need to leave. But neither of us can imagine taking her back to MC or anywhere else.
I was glad and proud of both her and myself in coping the way we did, and it was what she wanted. However I was totally exhausted, and I couldn’t have done it much longer, physically or even financially (I was self-employed). It certainly couldn’t have lasted for a month, let alone 6 months.
So what does that means for you? How long will this last? What help will you have? How strong are you, physically emotionally and financially? How much does it matter to you and to her?
Please ignore the ‘treasure every moment’ comments. I’m sure that people who feel that way had a very different experience, or no experience at all. Just do your best, based on how things are going.
Today if possible.
Hospital can line up Hospice Care at home
People want to die at home,m with their loved ones and familure surroundings, not on a Hospital alone.
Many times in the morning, after breakfast she would need to use the restroom and most often the nurse was with someone else doing all the necessary state requirements of feeding, changing bed, etc. So she would have to wait and would often end up having to use the toilet in her diaper which caused her distress. After several times of this, I would just get her out of bed myself and to the restroom. I watched what they did. I was fortunate in that I am a little younger at 51 which made the physical part easier.
By early Autumn, after several times of her telling me she was afraid to be alone there I started asking questions. One morning, one of the day nurses said I should listen to her, because it wasn't just her dementia talking and that she was more "with it" than people would give her credit. My mom complained that some staff were mean to her. After some thought, I just decided that her being there wasn't worth it. I brought her home and yes it was challenging, yes it was difficult, yes there were sleepless nights for me. But, it was also peace of mind that I knew exactly the level of care she was receiving, I knew when she was fearful or upset or happy. For 2 months she would wake at night and yell out. She was confused, especially at night, and didn't know where she was or how she got there. She would try to get out of bed, she would call out several times a night and I would go in to soothe her and tell her she was safe and she was in her own bed and her bedroom. Slowly she found peace and the nightly call out diminished to maybe one a week. It made me sad to think about the times at the care facility when I realized that staff would tell her to be quiet or worse "shut up" and to go back to sleep. They would stuff pillows on her sides so she couldn't turn or try to get out of bed. I'm glad I got her out of there.
I know my situation isn't for everyone, but after 6 months of caring for her she passed gently and softly one afternoon. She wasn't in distress and fortunately didn't need any pain medications. Having been with her intensely for months I knew her pace and her rhythm. I knew when she was comfortable, and when she was anxious. I knew the day she stopped eating, and then stopped drinking. I could tell she was getting closer to her next journey. I spent the last 3 days with her nearly non-stop, showered her, changed her, and held her hand. Told her constantly she was loved, brushed her hair. I was alone with her, holding her hand when she took her last breath. I like to think she chose me to be with her for her last few months. My other siblings were busy with their family and kids. But I knew I would only have this one opportunity to be there for her in this way. I'm glad I made the decision I did and I know that it isn't for everyone. But if you do have the choice, I say bring her home. I don't regret making that decision for one moment.
All the best to you in this difficult time.
My understanding was that exceptions for visits were made for those actively dying/on hospice. If she is truly dying, they should allow you, with restrictions, to visit.
If she is not on death's door OR they won't allow visits, bringing her home is something you will have to decide for yourself. Talking to those who provide her care would be a place to start. In order to decide whether you can provide the care she currently gets, you need to know what that entails. If she needs specialized nursing care and you don't have the skills/expertise, then unless you can hire a nurse (NOT a CNA), bringing her home might be off the table.
I’ve spoken with the staff about what specifically their end of life care is. I would love to bring her home but this would be physically, mentally and emotionally exhausting and not something I could do.
In my opinion, you’ve arranged the best care possible for your Mom, you’ve done your absolute best.
My deepest sympathy goes to you and your family. It's an especially heartbreaking time to lose someone in a care facility.
Do you have anyone to help you with her care around the clock? I know how you feel about wanting to bring her home. I think my LO would be able to sense it, though, I may be imagining that. I wonder if she's waiting to get home, before she lets go. I know this must be so difficult. Please post with updates, if you can.
Second, is she getting the end of life care she needs in the MC? If you know you can offer a better standard of care at home, then I would definitely consider bringing her home.
Third, providing her care will include both good and bad moments. Will you feel better after her death for having been with her during this time? Even considering the stress of providing care? I have found the emotional impact of my parent yelling at me with some form of disapproval or begging me to help them call/visit a dead relative much more difficult than any physical care. It's not easy to see a parent in pain or unable to eat or drink either. Be honest with yourself about your ability to handle these things 24/7.
If your mother can appreciate being home and you can handle her care at home even with social distancing considerations, then I would probably bring her home so I spend those final days and hours with her.
BUT only if she tests negative for COVID19.
Another option would be to have her transferred to the Hospice In Patient Unit again only if she tests negative for COVID19.
You do not want to put yourself, the rest of the family or any of the Hospice staff at risk if she tests positive.
If you can be available night and day for her and want to, then by all means try; I do not know what rules may apply to removing a person from hospice during lockdown or even if they allow it.
So sorry you are dealing with this during this pandemic. We lost my partners dad in February, got told he had aggressive leukaemia the eve before we moved. Literally threw boxes in new place and went to see him. He lasted just 20 days and of course very few could attend the funeral.
Whatever you decide, be kind to yourself during this rough time.
Regards,
We were told it was very common for people to "leave" when their loved ones were not there. The nurse said they suspect it might be easier for them to let go when you aren't in the room.