My Mom [98] is also on Hospice and the Hospice group gave me a 3-ring binder with all kinds of information and a list of what to watch for when the time is near.
At first I thought Mom was going to transition soon because she had stopped eating for a month, down to skin and bones... as of recently she is feeding herself which had surprised everyone. I don't know if this is temporary or not. Her brain is damaged and this isn't any type of quality of life not understanding her surroundings. I feel so sad for my Dad who visits her at long-term-care every day thinking she will be walking out the front door and back to her home.
My mom is on hospice too, but the end is not near.
Educate yourself on what you are going to see and hear as things progress. Knowing what you are seeing might help reduce the surprise of it and the dismay you might feel otherwise. Some of the responses are counter-intuitive.
There will come a time when you should not give water or food. This is not cruel. This is simply how it works. Passing may be harder for her and more traumatic for you by doing so.
A hospice nurse told me that sometimes people will practice dying. It will look like they are on the verge, but they then pull back and don't die. Their vitals get a little better and they are a little more coherent. This can go on for a while.
You may hear her gurgling. This is normal and is just air passing through phlegm in her throat.
Sing her songs that make her happy, say prayers with her if she likes that. Hold her hand, and remain calm and reassuring.
You might even give her permission to go if she's ready. Let her know you will all be fine and will know she loves you. "Mama I know you're tired. It's OK if you are ready."
Be prepared for it to happen when you turn your back for a minute. My hospice social worker told me that is how it almost always happens. They go when they feel like nobody is watching. We don't know why.
dreagarcia, I was in a similar situation with my mom-- she was in hospice at my home for the 3 weeks before she died of cancer. It was, as some have said, in many ways the most difficult time of my life. There is no preparation for this, and in my case at least, almost no support. It feels overwhelming. You may have to do things that you cannot imagine in order to make her comfortable. You may not think you are capable or strong enough, but trust me, you are! As you do, remember this: THIS IS THE BEST PART. The VERY best! Try to remember that, savor every little bit that you can. As hard as it is, in this difficulty, there are shining moments that will live on in your memory and you will know, in your heart, that you did your very best for her at the time she needs you the most.
I have precious memories from caring for my mom that no one else has. Quiet moments when we talked about what "it" will be like for her, times when she had her heart wide open for me--telling me how much she has loved me, how proud she was of me, how much my caring for her and my dad (who was also stage 4 cancer at the time) has meant to them both. These are some of the rewards I had while having to do the work of helping her die. Knowing that you are there and are providing her with care, dignity, respect and comfort is such a valuable gift to you. Yes, it will be unimaginably hard, but over time, the pain will lessen and the sweet memory and satisfaction of knowing you were there for her will sustain you onwards.
In a practical sense, these are some things that, looking back over my mom and my dad's final days, were the most helpful: 1) Set up and use a CaringBridge account to keep everyone informed as to how she is doing, what you need, reflections, condolences etc. Sometimes people in her life want and need to know, but you don't want to have a million phone calls and emails. It surprises me even today, how some people feel personally insulted if they are not called and kept up to date! ;-) 2) I set up audio monitors (from the baby department)--baby monitors by the bedside and throughout the house. This allowed me to leave her side, but still hear if she needed help or medication. During the night, I could also hear and be there quickly when needed. This was a Godsend! I used them with my dad, too, when his time came. 3) Let her lead--if she wants to talk, talk. My mom had periods of time when she seemed to be having conversations with people who were not there, or times when she was very talkative, but I couldn't understand a word! It was all very real to her, I am sure! If she wants to eat, help her, but do not force it. Near the end, she may not need food as the body has a way of shutting down that department. It's OK.
It is really a unique time, a special time, and a beautiful time in a strange sort of way. You are very lucky to be there as odd as it seems. Do your best and you will be fine in the end. Prayers for strength for you during this time!
As difficult as this is you are lucky to have her at home and under hospice care. This is as good as it gets for folks in the final stage of life. She has you and good care. So many people have no one at the end. If you haven't done so, arrange some respite care using a hospice volunteer so you can get out, run some errands and just get a breath. All the best to you......
Maggie answer you very poetically and with much sensitivity. These days to come may be the ones in which you provide her with more love and care than you have in your life, at a time when she needs it the most. If you can think of this journey as the one on which you may be able to provide her with the support she needs now more than ever, it may help to balance the grief that you feel.
I am so sorry for the situation, for you and your mom, but hope that you can find a path as Maggie wrote to help your mother on her last journey when you both may need each other than you have at any other time in your life....she to have your support, and you to be able to make her last days more comfortable and loving.
You thank your lucky little stars that you are in a position to help her on her final journey. You make sure you tuck her in every night and tell her you love her. You take your lead from your dear mom...talk about it? Maybe. Maybe not.
You keep her warm and clean and safe. You turn her pillow over every so often so she has a cool place for her head. If she's hungry, you give her whatever sounds good. If she's not, you let it go. Above all else, you keep her pain free, even if it means you dont quite get to say a final good bye.
I am sorry for your loss. The sun probably won't shine quite as brightly ever again...
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At first I thought Mom was going to transition soon because she had stopped eating for a month, down to skin and bones... as of recently she is feeding herself which had surprised everyone. I don't know if this is temporary or not. Her brain is damaged and this isn't any type of quality of life not understanding her surroundings. I feel so sad for my Dad who visits her at long-term-care every day thinking she will be walking out the front door and back to her home.
Educate yourself on what you are going to see and hear as things progress. Knowing what you are seeing might help reduce the surprise of it and the dismay you might feel otherwise. Some of the responses are counter-intuitive.
There will come a time when you should not give water or food. This is not cruel. This is simply how it works. Passing may be harder for her and more traumatic for you by doing so.
A hospice nurse told me that sometimes people will practice dying. It will look like they are on the verge, but they then pull back and don't die. Their vitals get a little better and they are a little more coherent. This can go on for a while.
You may hear her gurgling. This is normal and is just air passing through phlegm in her throat.
Sing her songs that make her happy, say prayers with her if she likes that. Hold her hand, and remain calm and reassuring.
You might even give her permission to go if she's ready. Let her know you will all be fine and will know she loves you. "Mama I know you're tired. It's OK if you are ready."
Be prepared for it to happen when you turn your back for a minute. My hospice social worker told me that is how it almost always happens. They go when they feel like nobody is watching. We don't know why.
::hugs::
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I have precious memories from caring for my mom that no one else has. Quiet moments when we talked about what "it" will be like for her, times when she had her heart wide open for me--telling me how much she has loved me, how proud she was of me, how much my caring for her and my dad (who was also stage 4 cancer at the time) has meant to them both. These are some of the rewards I had while having to do the work of helping her die. Knowing that you are there and are providing her with care, dignity, respect and comfort is such a valuable gift to you. Yes, it will be unimaginably hard, but over time, the pain will lessen and the sweet memory and satisfaction of knowing you were there for her will sustain you onwards.
In a practical sense, these are some things that, looking back over my mom and my dad's final days, were the most helpful:
1) Set up and use a CaringBridge account to keep everyone informed as to how she is doing, what you need, reflections, condolences etc. Sometimes people in her life want and need to know, but you don't want to have a million phone calls and emails. It surprises me even today, how some people feel personally insulted if they are not called and kept up to date! ;-)
2) I set up audio monitors (from the baby department)--baby monitors by the bedside and throughout the house. This allowed me to leave her side, but still hear if she needed help or medication. During the night, I could also hear and be there quickly when needed. This was a Godsend! I used them with my dad, too, when his time came.
3) Let her lead--if she wants to talk, talk. My mom had periods of time when she seemed to be having conversations with people who were not there, or times when she was very talkative, but I couldn't understand a word! It was all very real to her, I am sure! If she wants to eat, help her, but do not force it. Near the end, she may not need food as the body has a way of shutting down that department. It's OK.
It is really a unique time, a special time, and a beautiful time in a strange sort of way. You are very lucky to be there as odd as it seems. Do your best and you will be fine in the end.
Prayers for strength for you during this time!
I am so sorry for the situation, for you and your mom, but hope that you can find a path as Maggie wrote to help your mother on her last journey when you both may need each other than you have at any other time in your life....she to have your support, and you to be able to make her last days more comfortable and loving.
You keep her warm and clean and safe. You turn her pillow over every so often so she has a cool place for her head. If she's hungry, you give her whatever sounds good. If she's not, you let it go. Above all else, you keep her pain free, even if it means you dont quite get to say a final good bye.
I am sorry for your loss. The sun probably won't shine quite as brightly ever again...